tag:blogger.com,1999:blog-62318076899944915952024-03-13T00:45:59.004-04:00The PHight or Flight ProjectAnonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.comBlogger126125tag:blogger.com,1999:blog-6231807689994491595.post-56444883241249062892016-12-30T10:47:00.001-05:002016-12-30T10:48:16.871-05:00New Year, New BlogI've decided to start a new <a href="http://www.worship-and-tribute.com/" target="_blank">website</a> and blog. I felt like I needed a fresh start, and wanted a space that could be more personal for me. I still plan to write about my life. Living with pulmonary hypertension will still be a big theme for me, but I'd like to be able to write about whatever interests me as well. <b><br /></b><br />
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<b>If you're interested in following me in my next blogging journey, please update your book marks to: <a href="http://www.worship-and-tribute.com/blog">http://www.worship-and-tribute.com/blog</a></b></h2>
Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com6tag:blogger.com,1999:blog-6231807689994491595.post-11507170625819867392016-09-16T09:50:00.002-04:002016-09-16T09:50:34.872-04:00Give Canadian Pulmonary Hypertension Patients Access to Life-Prolonging TreatmentsI started a petition about a week to help Canadian pulmonary hypertension patients gain access to more available treatment options. <br /><br />Unfortunately, many Canadians with pulmonary hypertension are denied
treatment options and access to newly FDA approved medications that are available in the US simply
because of cost. With a disease as serious as pulmonary hypertension,
patients cannot afford to wait for better treatment options to become
available and accessible to everyone.<br /><br />To learn more, and to sign petition, please click <a href="https://www.change.org/p/justin-trudeau-give-canadian-pulmonary-hypertension-patients-access-to-life-prolonging-treatment?recruiter=83936736&utm_source=share_petition&utm_medium=copylink" target="_blank">here.</a> <br /><br />Pulmonary Hypertension News also wrote about why Canadians have access to less treatment options, my petition, and a bit about me. That article can be found<a href="http://pulmonaryhypertensionnews.com/2016/09/13/canadian-pulmonary-hypertension-patients-petition-for-public-funding-to-new-treatments" target="_blank"> here.</a><br /><br />Thank you for everyone who has taken the time to learn more about my petition, sign and share it.Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com7tag:blogger.com,1999:blog-6231807689994491595.post-34956435033332939772016-08-31T10:20:00.003-04:002016-08-31T10:20:41.152-04:00"There Was Little Support For People With The Same Rare Disease So She Stepped Up"<blockquote class="instagram-media" data-instgrm-version="7" style="background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 658px; padding: 0; width: 99.375%;">
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<a href="https://www.instagram.com/p/1x2rLBJme7/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none;" target="_blank">A photo posted by serena (@worshipandtribute)</a> on <time datetime="2015-04-22T13:31:27+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Apr 22, 2015 at 6:31am PDT</time></div>
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<br />"Life can change in an instant. One day you feel great, your health is
good, you are on your way to living the life you've always dreamed of.
The next, you start feeling less than great. And then even worse and
eventually you're being told you're sick, more than just a pesky cold
that won't go away. Suddenly you have to start incorporating regular
doctor's visits and time for treatment into your schedule. This isn't
what you were prepared for and you never got a warning this would happen
to you. Life has taken a complete 180 without your consent."<br /><br />I was recently featured on <a href="http://diply.com/different-solutions/article/woman-riases-pulmonary-hypertension-awareness-rare-disease" target="_blank">Diply</a>! Please visit the <a href="http://diply.com/different-solutions/article/woman-riases-pulmonary-hypertension-awareness-rare-disease" target="_blank">source</a> to read more about my efforts to raise awareness for pulmonary hypertension.<br /><a href="http://diply.com/different-solutions/article/woman-riases-pulmonary-hypertension-awareness-rare-disease" target="_blank">http://diply.com/different-solutions/article/woman-riases-pulmonary-hypertension-awareness-rare-disease</a>Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com3tag:blogger.com,1999:blog-6231807689994491595.post-69552659097872583012016-08-30T16:58:00.002-04:002016-08-31T08:53:53.502-04:00Subscription Box Review: calmbox Review<a href="http://2.bp.blogspot.com/-O4QVzb12hpM/V8Xno4FzaaI/AAAAAAAABUo/ITOBNKZhKMc-NPkrUCmMMIUa7HFZVYMwwCK4B/s1600/IMG_7133.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-O4QVzb12hpM/V8Xno4FzaaI/AAAAAAAABUo/ITOBNKZhKMc-NPkrUCmMMIUa7HFZVYMwwCK4B/s320/IMG_7133.jpg" width="240" /></a><u><b>What is calmbox?</b></u><br />
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<a href="https://thecalmbox.com/" target="_blank">calmbox</a> is a monthly subscription box including several different items to help promote mindfulness, unwinding and finding the calm within everyday life. Items range from music, tea, candles, natural products, motivational items and and inspiring books. The theme for August's calmbox is "calm summer evenings." A portion of proceeds from every box is donated to charity. This month a portion was donated to <a href="https://donate.charitywater.org/donate/home?utm_medium=ppc&utm_source=adwords&utm_campaign=brand&utm_content=brandcw5&gclid=Cj0KEQjw3ZS-BRD1xu3qw8uS2s4BEiQA2bcfM1wxViE1rbRZf1IK4sD2ZHTaAPiAzItEx6inYXlJeQEaAjDH8P8HAQ" target="_blank">charity: water</a>. <br />
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<u><b>How Much Does it Cost?</b></u><br />
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calmbox costs $35 USD, plus free shipping for one month's subscription. However, first timers to calmbox can enter the code "CALM" during their checkout to receive $5 dollars off their first purchase. <br />
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<u><b>calmbox August 2016 Review</b></u><br />
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The calmbox arrived quickly, and all items were received in perfect condition. The shipping box is quite lovely, and has lots of little details. The inside of the lip of the box says "breathe" with a heart, which I found very fitting for someone with pulmonary hypertension. The other outside edges of the box contain calmbox's social media platforms, along with a quote by Buddhist monk Thich Nhat Hanh about drinking tea in a mindful way. It was at this moment I knew that calmbox would be my favorite subscription box that I have reviewed.<br />
<a href="http://1.bp.blogspot.com/-wt_FZY2tA80/V8Xp_D7xWGI/AAAAAAAABUw/qcHME__e0oog7rHIqx5CGMMgbuMsQ9UYACK4B/s1600/IMG_7134.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-wt_FZY2tA80/V8Xp_D7xWGI/AAAAAAAABUw/qcHME__e0oog7rHIqx5CGMMgbuMsQ9UYACK4B/s320/IMG_7134.jpg" width="240" /></a><br />I like that calmbox helps promote inner peacefulness, but is also conscious on a more global level. Knowing that part of their proceeds goes back to a charity is a really nice idea (its like two gifts in one!) Their boxes are also packed using eco-friendly materials.<br />
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The calmbox included an array of goodies to help one achieve calmness. It also came with a write up about each item, the charity that a portion of the proceeds were sent to, and the months theme.<br />
<a href="https://2.bp.blogspot.com/-HBMBTHSWpNo/V8XvvG-4bhI/AAAAAAAABVM/mt1Sj-xMLsI5IMBOTG_IfpZFVdY3SIxEwCEw/s1600/IMG_7135.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-HBMBTHSWpNo/V8XvvG-4bhI/AAAAAAAABVM/mt1Sj-xMLsI5IMBOTG_IfpZFVdY3SIxEwCEw/s320/IMG_7135.jpg" width="240" /></a><br />
One of the first items I noticed was "<a href="http://www.goodreads.com/book/show/524750.Everyday_Positive_Thinking" target="_blank">Everyday Positive Thinking</a>" by Louise Hay and friends. I actually purchased this little book a couple of months and read a motivational quote each morning to try and start my day on a positive note! This book is definitely a good choice for the calmbox. I think reading a quote while enjoying a some of the <a href="https://www.yogiproducts.com/teas/sweet-tangerine-positive-energy/" target="_blank">Sweet Tangerine Positive Energy tea by Yogi</a> included in the box would make for a really nice way to start the day! <br />
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I also noticed a tin of <a href="https://www.senchanaturals.com/collections/green-tea-mints/products/cherry-blossom-green-tea-mints-single-canister" target="_blank">Sencha Green Tea Mints in Cherry Blossom Flavor</a>. I used to work at a Canadian Tea store that sold these mints and they are seriously delicious. I thought they were no longer available, so I was very pleased to receive a tin my favorite flavor! The mints are gluten-free, vegan, and non-gmo. They are also sweetened with stevia instead of sugar, making it a mint that could be enjoyable for many people with diet restrictions, such as myself. <br />
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<a href="https://3.bp.blogspot.com/-3YOAY9cYqAE/V8XvzSE3PfI/AAAAAAAABVU/rbUDDnhiUh8q6B5iRi8raCXKKGMc-mgsgCEw/s1600/IMG_7137.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://3.bp.blogspot.com/-3YOAY9cYqAE/V8XvzSE3PfI/AAAAAAAABVU/rbUDDnhiUh8q6B5iRi8raCXKKGMc-mgsgCEw/s320/IMG_7137.jpg" width="240" /></a></div>
<a href="https://4.bp.blogspot.com/-XAOl1rtKNSE/V8XvyRyhCVI/AAAAAAAABVQ/E-HMhgSSEi4foPXWeNatnMVH8MqiATZHwCEw/s1600/IMG_7136.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://4.bp.blogspot.com/-XAOl1rtKNSE/V8XvyRyhCVI/AAAAAAAABVQ/E-HMhgSSEi4foPXWeNatnMVH8MqiATZHwCEw/s320/IMG_7136.jpg" width="240" /></a><br />
The box also contained the perfect items to meditate and calm your mind with. The calmbox included a box of <a href="http://www.incensewarehouse.com/Triloka-Chakra-Incense--Heart-Chakra-Incense_p_739.html" target="_blank">Triloka Heart Chakra Incense Cones</a>. (The heart chakra is located in the centre of the chest, and deals with the circulatory system, heart, lungs and chest area. Again, very fitting for someone with pulmonary hypertension!) The calmbox also included a small amethyst stone, with a little fact sheet about the beliefs and uses of the stone. <br />
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Another great item that was included in the August calmbox is 10 ml of CHILL essential oil blend by<a href="http://friskyfish.myshopify.com/products/chill" target="_blank"> Frisky Fish. </a>The small roll on is a mixture of lavender and peppermint- the perfect blend to help soothe you down. I usually roll my eyes when people talk about how great how essential oils, but I now see the light. I used the CHILL roll on when I had a terrible head cold and it helped clear out my sinuses! I am also wearing a little on my temples right now to help me relax.<br />
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Last but not least the box contained a bar of <a href="http://www.tomsofmaine.com/product-details/natural-beauty-bar-relaxing" target="_blank">Tom's of Maine Relaxing Beauty Bar</a>, which I am looking forward to trying because it smells amazing. (I love the smell of lavender, it is so calming and it reminds me of my grandmother who I miss.) The bar is made with calming lavender and botanical oils, vitamin E and olive oil to help relax you while keeping your skin moisturized. <br />
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<u><b>Overall Thoughts</b></u><br />
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I would strongly recommend <a href="https://thecalmbox.com/" target="_blank">calmbox</a> to anyone who likes to meditate, or is hoping to become more mindful and would like to promote calmness within their life. The box seems like good value for what you receive, and knowing that part of your purchase goes to a charity certainly helps you feel like you are also giving back to someone else. All the items are carefully picked. calmbox did a great job thinking about items that would be pretty user friendly to people with diet restrictions, along with picking items that made out of organic ingredients. I have reviewed several subscription boxes now, and based on my interests and lifestyle, calmbox contained the most items that I would actually use, and would be excited about using. Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com1tag:blogger.com,1999:blog-6231807689994491595.post-58488221831252117722016-08-21T11:17:00.001-04:002016-08-21T18:44:06.940-04:00Subscription Box Review: T-Surprise<u><b>What is T-Surprise?</b></u><br />
<a href="https://tsurprise.com/" target="_blank"> T- Surprise</a> is a monthly subscription box that promises to help you discover 4-5 different varieties of teas from around the world. The box also includes snacks and tea accessories. <br />
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<u><b>How Much is T-Surprise?</b></u><br />
It costs $25 (CDN) a month for subscription month. <br />
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<u><b>T-Surprise August 2016 Review</b></u><br />
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<a href="https://1.bp.blogspot.com/-5DcTopLK3H4/V7m9U_-rDuI/AAAAAAAABT0/wcWUzsWafDcTDCYePdA4IEgHFHdL3HoRACLcB/s1600/IMG_6922.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-5DcTopLK3H4/V7m9U_-rDuI/AAAAAAAABT0/wcWUzsWafDcTDCYePdA4IEgHFHdL3HoRACLcB/s320/IMG_6922.jpg" width="240" /></a></div>
The box was delivered within another box, so everything was shipped in
perfection condition. The box is more petite than most subscription
boxes that I had received, which is great if you are short on space.<br />
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<a href="https://2.bp.blogspot.com/-kCGHNNjoqHc/V7m9VLGsQiI/AAAAAAAABT4/UWnSc5kHdhci2cgxoqi4o3GEuPM38g2ngCLcB/s1600/IMG_6926.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-kCGHNNjoqHc/V7m9VLGsQiI/AAAAAAAABT4/UWnSc5kHdhci2cgxoqi4o3GEuPM38g2ngCLcB/s320/IMG_6926.jpg" width="240" /></a></div>
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The box included two lemon ginger energy bites. They are gluten-free, vegan and paleo- which is another score for me since I usually can't eat the delicious snacks included in subscription boxes. It can be difficult finding snacks that I can take with me on the go, so I am glad T-Surprised introduced me to a Canadian company that makes cleaner snacks!<br />
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A small sample of sea-buckhorn tea. The bag doesn't include information about the tea, but a list of information was included within the box. The write about this tea includes both its health benefits and history. After reading the health benefits of sea buckthorn, I am very interested to try it and see if i can benefit from its cardiovascular and anti-inflammatory benefits. <br />
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A sample of matcha. Again, the bag doesn't include much information but the piece of paper included in the box does give you a recipe to make a match frosted cocktail (and yes, it sounds delicious.)<br />
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There isn't much information available on this bag of tea, and because T-Suprise appears to be a Quebec based company, a lot of what is available is in French. This tea does not appear to be in the list that came in the box. There is another tea on the list that appears to be missing in the box. Perhaps I got the wrong sample of tea?<br />
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<i><b>Edit:</b></i> upon further investigation it appears that branding for the tea in question does not match the one on the list, but the description of it is correct.<br />
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Here is a picture of the list that included more information about the tea, along with two ready to steep bags of tea. <br />
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The bags of the tea on the list do not match how the two pictured look. I could tell them apart because I worked at a few tea stores throughout university, but I wonder if this would be harder for someone who is newer to drinking loose leaf tea?<br />
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The list includes information on how to steep the two bags of tea, both of which are to be made iced. Having the tea pre-measured and in a bag ready to steep makes it easier to make the perfect picture of iced tea.<br />
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This month's T-Surprise box also included a mini matcha whisk, a coupon for Cook It (that is entirely in French,) and a little card to help you guide on how to brew various kinds of tea. <br />
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<u><b>Over All Thoughts</b></u><br />
T-Surprise is a good value for all the little goodies that your receive. Some of the samples of tea were quite generous as well. There was also a different variety of tea within the box, which makes it appealing to anyone who is looking to try anything new, or is new to loose leaf tea. The iced teas smell delicious, and I was happily surprised to have received a snack (that is made in Canada!) that I could actually eat. <br />
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It should be noted that you would need something to steep loose leaf tea in to enjoy most of the teas in this box. Loose leaf tea is higher quality than bag tea, so this a worthwhile investment anyways! (Once you try loose leaf you can't go back to bagged tea, trust me.)<br />
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It would be nice to have more information directly available on the packages of tea. Having the ingredients listed right on the bag could also help anyone with allergies, or restrictions due to medications feel safer while enjoying their tea. It may also be a good idea to include the website to the tea company right on the bag in case anyone enjoys it so much that they would like to purchase more.Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com1tag:blogger.com,1999:blog-6231807689994491595.post-89085378225405116472016-08-18T14:33:00.001-04:002016-08-18T14:44:07.037-04:00PHighter Friday: Starése<a href="https://2.bp.blogspot.com/-2vhN1nS5uVo/V7YBZY4WZlI/AAAAAAAABTE/WokpdGHgjJADLOUapzHwCcKjkCYGDM22ACLcB/s1600/1unnamed.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="https://2.bp.blogspot.com/-8rZXsfmz4zU/V7YBOkyQhXI/AAAAAAAABTA/9FmmZh_TptwrulJnAnn-Koe5ITTFJaVSgCLcB/s1600/unnamed.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-8rZXsfmz4zU/V7YBOkyQhXI/AAAAAAAABTA/9FmmZh_TptwrulJnAnn-Koe5ITTFJaVSgCLcB/s320/unnamed.jpg" width="320" /></a><b>#MiraclesHappen</b><br /><br />Hello fellow PHighters! What an amazing privilege to share my story with you all today.<br />My name is Starése Coote and I am a 30 year old wife and mother, living in Somerset West, South Africa.<br /><br />When I was diagnosed at the age of 27, my husband and I had only been married a year and were planning our futures without a care in the world. As you can well imagine, our rose-tinted honeymoon phase came to an abrupt halt with my diagnosis, but even though the last three years have brought many unforeseen challenges, it has definitely created an even stronger bond between us. I am so grateful for his unwavering love, support, sacrifice and strength. <br /><br /> My PH journey began like many others' with breathlessness that slowly increased over time and strange bouts of gasping for air even when doing mundane things like making the bed - clearly not normal, but when you consider yourself to be a healthy young adult with your whole life ahead of you, you don't pay too much attention to the initial symptoms.<br /><br /> At first I was misdiagnosed with exercise-induced asthma, but before I could even start the inhalers, my grandparents-in-law made an appointment with a Pulmonologist to get a second opinion. I am so grateful that they convinced me to go see a specialist because I was quite happy to just accept the asthma diagnosis and carry on. But thanks to their generous offer to pay for the appointment, I went and received a very different diagnos is: Primary Pulmonary Arterial Hypertension. As I am writing this I can still vividly remember how I felt when the doctor explained what that meant, leaving me in a pool of tears with a very devastating prognosis. Most of you reading this will know what it is like to be told you have a very short life expectancy and won't be able to have children etc etc, but I look back at the way I received my diagnosis and realize that the hopeless picture that was painted was not true at all! Three years on and I am living my life filled with abundant blessings - not least of which is my precious baby girl that I gave birth to a year ago! That's right - PH couldn't stop me from fulfilling my dream to have a baby!<br /><br /> At the time of my diagnosis my PH was very advanced and I had reached the dreaded syncope stage. I even lost consciousness once while lying in bed fluffing my pillow! That mini sit-up proved to be a bit too much for my struggling heart, so needless to say I was not in a good place.<br /><br />We had to leave our hometown in Johannesburg because of the high altitude (Johannesburg is 1700m above sea level) and after a brief stint in the UK, we moved back to South Africa to our current home in Somerset West which is a beautiful coastal town in the Western Cape province.<br /><br />While in the UK I started taking a very high dose of calcium channel blockers which proved to be just what my narrowing pulmonary arteries needed. My mean pulmonary pressures went from 62 to 27 in a matter of weeks - praise God! And just a quick note on the topic of faith - I seriously cannot imagine being on this journey without my belief in an Almighty God carrying me through the rocky terrain of this mysterious condition.<br /><br />God has been so faithful along the way.<br /><br /> But let me get back to having a baby after being diagnosed with PH. I just want to say that I in no way advocate going against doctors' orders when dealing with an unpredictable disease and a decision of this magnitude, but this is my story of doing just that.<br /><br /> After my diagnosis, my desire to be a mom was crippling. I found myself deeply depressed and I hate to say this but I even felt a bit of resentment towards those around me having babies. It was a very dark time emotionally even though my body had physically made a remarkable recovery. I felt normal again and had no obvious trace of this disease ruling my life except for the medication I took each night. In a way it was harder to accept that I wasn't 'allowed' to have a baby because my body felt strong again. I honestly felt deep down that I can do this! <br /><br />Initially my husband was not on board with the idea which is totally understandable - he had nearly lost me once and was not about to take any chances. If I'm honest, his resistance to the idea and my overwhelming belief that I would be fine put a lot of strain on our marriage, but after about 10 months of visits to my cardiologist that showed that my PH was stable and my heart back to normal, we finally and very prayerfully decided to fall pregnant.<br /><br /> Besides the usual pregnancy discomforts and 17 weeks of terrible morning (afternoon and evening) sickness, I had a very normal pregnancy. I was monitored very closely of course, but all the doctors were amazed how well my body coped!<a href="https://2.bp.blogspot.com/-2vhN1nS5uVo/V7YBZY4WZlI/AAAAAAAABTE/WokpdGHgjJADLOUapzHwCcKjkCYGDM22ACLcB/s1600/1unnamed.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-2vhN1nS5uVo/V7YBZY4WZlI/AAAAAAAABTE/WokpdGHgjJADLOUapzHwCcKjkCYGDM22ACLcB/s320/1unnamed.jpg" width="180" /></a><br /><br />I was admitted to hospital early because it was suspected that I might have developed a blood clot, but my time in hospital ended up being a really chilled experience of just relaxing before the birth. <br />It was decided that I would deliver at 37 weeks via c-section which was scheduled for the 12th of August 2015. All I can say is that seeing our baby girl for the first time was one of the most exhilarating moments of our lives!<br /><br />I went straight into ICU for 24 which was just a precaution in case my heart struggled to get rid of excess fluid post delivery. Thankfully I cruised through ICU without any issues and was reunited with our perfect princess, Micaela Grace, the very next day. <br /><br />Micaela has just celebrated her first birthday and she is absolutely perfect! We are eternally grateful for the privilege of being her parents and for the miracle her life represents.<br /><br />Over the past year my pressures have slowly increased again, so I will be going on new medication soon to bring it back down again, but I am trying not to fixate on the numbers. I have learned that the human body has an amazing ability to fight, adapt and recover. Don't lose hope even if you are physically in a bad place right now because things can turn around very quickly!<br /><br />I love making connections, so don't hesitate to add me on <a href="https://www.facebook.com/profile.php?id=100012295099551" target="_blank">Facebook</a> or connect with me on my blog <a href="http://www.goingwithgrace.co.za/">www.goingwithgrace.co.za</a><br />
<a href="https://1.bp.blogspot.com/-eGh5VytT0L8/V7YB01oFIKI/AAAAAAAABTI/ILF76IjX554Wj5FYJOkv9Ak9YTkpx692ACLcB/s1600/2unnamed.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-eGh5VytT0L8/V7YB01oFIKI/AAAAAAAABTI/ILF76IjX554Wj5FYJOkv9Ak9YTkpx692ACLcB/s320/2unnamed.jpg" width="180" /></a><br />I have loved sharing my story and if you have taken the time to read through it then I am truly humbled. Thank you! <br /><br />Keep on PHighting brave ones!<br /><br />A little bit of faith and hope can go a long way.<br /><br />Love,<br /><br />Starése <br />Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com6tag:blogger.com,1999:blog-6231807689994491595.post-25066640958498011542016-08-10T09:42:00.003-04:002016-08-10T09:42:51.601-04:00Life With PH: Saying No, for Now, to Being a Parent with PH<span></span><br />
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<a href="http://pulmonaryhypertensionnews.com/blog/2016/08/09/why-pulmonary-hypertension-might-prevent-me-from-being-a-parent/"><img alt="http://pulmonaryhypertensionnews.com/blog/2016/08/09/why-pulmonary-hypertension-might-prevent-me-from-being-a-parent/" border="0" height="188" src="https://3.bp.blogspot.com/-fTTEh41hz8U/V6eq_AC6IbI/AAAAAAAABSw/IuKgNZCOJeUwwAZqeqfd13xF6gRkIYYDQCPcB/s320/Life_with_PH.jpg" width="320" /></a></div>
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<span data-offset-key="e2bhk-0-0"><span data-text="true"><br />"I went to a doctor’s appointment in March to see a rheumatologist, who placed me on another medication that causes birth defects. Again, I was warned not to get pregnant. I did something I try not to do at doctor appointments. I began to tear up, and I told her that I wasn’t supposed to have children anyway and I am too scared to adopt because of my dreaded life expectancy. At that moment, she began to talk to me a way none of my other specialists have..."</span></span></div>
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<span data-offset-key="7rqca-0-0"><span data-text="true">Please visit <a href="http://pulmonaryhypertensionnews.com/blog/2016/08/09/why-pulmonary-hypertension-might-prevent-me-from-being-a-parent/">Pulmonary Hypertension News</a> to read more.</span></span></div>
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Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com1tag:blogger.com,1999:blog-6231807689994491595.post-87278159216110002352016-08-05T09:00:00.000-04:002016-08-05T09:39:14.675-04:00PHighter Friday: Elsa<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-YCNzYbHse9U/V6PIOyZHVfI/AAAAAAAABR8/WtJ9kNVe2NUfdnmbrGr8T2YfcPn3wojpwCLcB/s1600/13956794_1310760945604113_654390452_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="319" src="https://3.bp.blogspot.com/-YCNzYbHse9U/V6PIOyZHVfI/AAAAAAAABR8/WtJ9kNVe2NUfdnmbrGr8T2YfcPn3wojpwCLcB/s320/13956794_1310760945604113_654390452_n.jpg" width="320" /></a></div>
<span class="null">My name is Elsa. I am a South African
citizen, currently residing in Australia. I was born with congenital
heart disease and a VSD was closed at age 10. During the procedure it
was discovered that I had PH and I was left with a ASD that could not
be closed due to the pulmonary pressures. I was not put on any
medication at the time and was just sent home.
<br />
I suffered from frequent chest infections and
in 1986 I ended up in hospital for 6 weeks with pneumonia and water in
my heart sack. I nearly died but with the grace of God and my mother's
persistence to insist a different antibiotic I pulled through. I
started drinking Garlic and Parsley, and cod liver tables every day and
until today I never had a chest infection again. <b><i> Please note that this
is my personal experience and in no ways intended as a medical opinion.*</i></b>
<br />
I met my husband and got married in 1993. We were
married for 5 years before we decided to start a family, but knowing the
risks we consulted a intern specialist before and we were advised not
to have a baby and rather seek alternative options. My husband's sister
offered to be a surrogate mother and our baby boy was born healthy and
strong without any health issues.</span><br />
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<a href="https://1.bp.blogspot.com/-ayF7-OCdpW8/V6PISDDwU6I/AAAAAAAABSA/V4gWMbvu3KIIz0tN3WBMPDVTbKkN-ElAQCLcB/s1600/13933381_1310766802270194_547253958_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-ayF7-OCdpW8/V6PISDDwU6I/AAAAAAAABSA/V4gWMbvu3KIIz0tN3WBMPDVTbKkN-ElAQCLcB/s320/13933381_1310766802270194_547253958_n.jpg" width="207" /></a></div>
<br />
<span class="null">In about 2004 I was getting out of breath more easily
and was sent to the city to see a specialist. He was brilliant and
started me on Adalat, Spiractin and Aspirin. I was advised to start
using nocturnal Oxygen too. This was the first treatment I got since
1983 when PH was diagnosed. It made a huge difference in how I felt and
the oxygen at night would charge my batteries for the next day. I have
always known my limits and would live accordingly but the new
medication and oxygen just made my life easier</span>.<br />
<br />
<span class="null">I believe in living life as normal as possible and I
have been working as a qualified hairdresser. When we moved to a rural
location I opened my own hair salon from home, and worked full-time from
9-5 as a stylist. I had a full time maid that would help with chores in
the house. This way I was free to work in my salon. <br /><br />In 2011 PH south Africa
was established and I was asked to be on the committee to raise
awareness. We had a very active group, but in 2013 my husband was
offered a position in Saudi Arabia and we moved to Jeddah. At first I
thought the heat would affect me, but it did not, and living at sea level
made a huge difference in how I felt. I had more energy. <br /><br />I have
joined the Saudi Association for Pulmonary hypertension as a honorary
member assigned to Patient support. As a foreigner to a closed Muslim
community that was a very big honour. I have learned a lot about the
disease when I was invited to the International seminars we had in Oman,
Abu Dhabi and Jordan.</span><br />
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<span class="null"><a href="https://1.bp.blogspot.com/-CQyEBcJPWZA/V6PKxJsS2CI/AAAAAAAABSM/Q870BH38aYwegrq32urKA-b-IzRKXSg4gCLcB/s1600/13950791_1310780602268814_1578526237_o.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-CQyEBcJPWZA/V6PKxJsS2CI/AAAAAAAABSM/Q870BH38aYwegrq32urKA-b-IzRKXSg4gCLcB/s320/13950791_1310780602268814_1578526237_o.png" width="200" /></a></span></div>
<span class="null">
In 2015 my pressures went up to 120 and I was put on Sildenafil as a treatment. I am using 75 mg of Viagra, and my pressures have since dropped to a stable 75. <br /><br />Earlier this year we moved to Australia and I decided to have a career change. I have taken up a course in Pastoral Care and Dementia, and I am volunteering at the local nursing home 3 times a week. <br /><br />I have always been a positive person, and I would not let my condition define me. I live life to the fullest, and believe that a positive attitude to live is beating the disease with at least 50%. If you look around you will see people that is worse off than yourself, and that keeps me going and motivates me. I live in a 3 level house and the stairs is a challenge, but I do one level at a time. I go for lengthy walks on a level surface and that is the best exercise for me. It is important to listen to your body and rest when you need it.<br /><br /><span class="null"> I am 43 years old now, and I am still going strong. Don't give up hope! <br /><br />A doctor once told my mother I would not live to
the age of 10....and gosh did I outlive that prediction. Live life to
the fullest of your ability, and stay positive and strong. Thank God for
every </span><br />
</span><br />
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<span class="null"><a href="https://3.bp.blogspot.com/-9AAAX8ooA7Y/V6PLdUD7cBI/AAAAAAAABSQ/L1eXu_s19p46d0_BDFrmij0d3_vDSq8VQCLcB/s1600/13933211_1310787052268169_1898050357_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://3.bp.blogspot.com/-9AAAX8ooA7Y/V6PLdUD7cBI/AAAAAAAABSQ/L1eXu_s19p46d0_BDFrmij0d3_vDSq8VQCLcB/s320/13933211_1310787052268169_1898050357_n.jpg" width="320" /></a></span></div>
<span class="null">
day as it is a precious gift. <br /><br />Take care and feel free to join my Facebook page <a href="https://www.facebook.com/Saudi-Association-for-Pulmonary-Hypertension-SAPH-1470200416552978/?fref=ts" target="_blank">SAUDI ASSOCIATION FOR PULMONARY HYPERTENSION - SAPH</a>.</span></div>
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<b>*The PHight or Flight Project does not endorse or recommend taking any medications, including natural supplements without discussing them with a medical professional. Please be sure to discuss your treatment options with a professional, such as a specialist. The PHight or Flight Project does not offer medical advice, and the opinions are based solely upon the writer. </b>Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com3tag:blogger.com,1999:blog-6231807689994491595.post-17256004346026033312016-08-03T09:18:00.002-04:002016-08-03T09:18:32.320-04:00Tips for Keeping a Pulmonary Hypertension-Friendly, Low-Sodium Diet<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-RMJ6fGuPPr4/V6HvGm2i12I/AAAAAAAABRs/TMUPWPvss3YkpLf2uZgm6-0lSctUxqiUgCLcB/s1600/low-salt.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="212" src="https://4.bp.blogspot.com/-RMJ6fGuPPr4/V6HvGm2i12I/AAAAAAAABRs/TMUPWPvss3YkpLf2uZgm6-0lSctUxqiUgCLcB/s320/low-salt.jpg" width="320" /></a></div>
Many people living with Pulmonary Hypertension are on a no- to low-sodium <a href="http://pulmonaryhypertensionnews.com/pulmonary-hypertension-diet/">diet</a>.
But trying to keep to such a diet can be very challenging, and create
obstacles for dining with friends, even for preparing your own meals.<br />
People
with PH are advised to maintain a low-sodium diet because salt can
cause water retention. The volume of blood that your heart has to pump
increases when too much water is stored in your tissues, making a diet
high in sodium dangerous for people with PH. Hearts with PH are
generally working overtime, which is why a low-sodium diet is so
important.<br />
You should always talk to your healthcare provider and
PH specialist about your diet. Your doctor will be able to advise how
many mg of sodium you can consume per meal/per day, which will differ
from person to person.<br />
Below are some general tips I have learned for navigating on a low-sodium diet.<br />
<h3>
1. Tips for Eating at a Friend’s House</h3>
If
you are invited over for a meal at a friend’s or family member’s house,
be sure to discuss your dietary needs with them ahead of time. At first
I found this difficult, and felt like a major pain. But I quickly
realized that although PH is unique, having dietary restrictions are
not.<br />
<ul>
<li>If you are going over for a meal at another person’s
house, you can always offer to bring a meal for yourself. That way,
hosts aren’t obligated to create something special for you, and neither
one of you will miss out on the bonding that happens over a nice meal.</li>
<li>Eat
a snack or meal before heading out for dinner. If friends are serving
salad before dinner, you can always snack on that and bring or make your
own dressing if they do not have a low-sodium salad dressing available.</li>
<li>You can offer to come over after dinner for tea and dessert if it will be a longer dinner party.</li>
<li>Don’t be afraid to bring your own condiments or whatever you need to ensure you have a meal that is safe for you.</li>
</ul>
<h3>
2. Tips for Dining at a Restaurant</h3>
When
dining at a restaurant, be sure to let your server know that you cannot
have salt in your meal. It is always easier to add a pinch of salt for
flavoring, than to try and take salt out of an already prepared dinner. I
find that many places also over-salt food, making it risky to eat
prepared meals regularly.<br />
When I go out to eat, I explain that I
cannot have salt due to a very serious heart issue. I say this because I
look healthy and, because of this, servers and chefs do not always take
my request seriously. Again, it can feel a little strange explaining
this, but I have gone out with friends who have celiac disease or are
vegan, and they also have to make special requests. Failure to make a
request understood has resulted in a few episodes where my heart felt
like it was trying to self-destruct. Not fun.<br />
<ul>
<li>Be sure to ask what the chef would recommend for your request.</li>
<li>Fine
dining restaurants and cafés that serve food made from fresh produce
will be able to better accommodate your needs than a fast-food chain.</li>
<li>Some
places will be happy to make something off-menu for you. Your best bet
is to get a protein that isn’t seasoned ahead of time, along with some
veggies.</li>
<li>Ask for pre-made sauces with salt to be served on the
side. (This way, you have better portion control of how much salt you
consume.)</li>
</ul>
<h3>
3. Tips for Preparing your Own Meals</h3>
Salt
is hidden in everything, from butter to broth. Below are some tips for
creating meals that will fit your sodium-restricted diet. Preparing food
can be tiring and taxing, especially for those of us living with a
chronic illness. Don’t be afraid to ask for help if needed. Take
advantage of those days you feel well enough to cook, and freeze
leftovers that can be heated up for a day where you don’t have as much
energy.<br />
<ul>
<li>If you are making your own meal, be sure to stay
clear of recipes that require a lot prepackaged items. An example would
be a curry recipe that calls for a pre-made jar of curry sauce for
butter chicken.</li>
<li>Look for a recipe that will actually instruct you on how to make the curry sauce. <strong>You
can alter any recipe as needed. Omit the salt completely, and
substitute low- to no-sodium products for products the recipe calls for.
</strong></li>
<li>Avoid prepackaged foods and meals as much as possible, as they will contain more sodium.</li>
<li>Always try to use products that contain either no or low sodium, such as no-sodium broth and butter.</li>
</ul>
If
you find that your meal is a little bland, there are several companies
that make low- to no-sodium seasonings and sauces. One company you will
be able to find anywhere is <a href="http://www.mrsdash.com/" rel="nofollow" target="_blank">Mrs. Dash </a>, which offers salt-free seasonings and marinades. Another, called <a href="http://www.mrspice.com/" rel="nofollow" target="_blank">Mr. Spice</a>,
creates organic, no-sodium marinades and sauces. Some super markets
also offer their own brands of low- or no-sodium cooking products, such
as broth.<br /><br /><b><i>*This post was originally featured on <a href="http://pulmonaryhypertensionnews.com/2016/07/21/blog/pulmonary-hypertension-and-tips-for-keeping-a-low-sodium-diet/" target="_blank">Pulmonary Hypertension News</a>.</i></b>Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com0tag:blogger.com,1999:blog-6231807689994491595.post-64935779111285176702016-08-02T16:18:00.002-04:002016-08-02T16:18:59.178-04:004 Things Not to Say to Someone with Pulmonary Hypertension<div class="separator" style="clear: both; text-align: center;">
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<a href="http://pulmonaryhypertensionnews.com/blog/2016/08/01/4-things-not-to-say-to-someone-with-pulmonary-hypertension/" target="_blank"><img alt="http://pulmonaryhypertensionnews.com/blog/2016/08/01/4-things-not-to-say-to-someone-with-pulmonary-hypertension/" border="0" height="188" src="https://4.bp.blogspot.com/-KwhpGv4QnLU/V6D_yFtK2SI/AAAAAAAABRc/Q5a4OcLFZbc0mV1Ytn4T_fLQ6UqJnOrxwCEw/s320/Life_with_PH.jpg" width="320" /></a></div>
<br />"I found that after I was diagnosed with pulmonary hypertension, I
received a bunch of off-brand advice. I realize the majority of what I
heard from others was an attempt to make the situation better. <span style="line-height: 1.5;">Unfortunately,
some of the words I received at times have been hurtful despite the
well intentions behind them. I began to find it quite difficult to feel
like I was biting my tongue in an attempt not to hurt other people’s
feelings, even though their advice felt like it was minimizing what I
was going through. </span><span style="line-height: 1.5;">As a blogger, I
also became scrutinized online by strangers who tried to give me
unsolicited advice and “words of wisdom” that simply do not apply to my
situation."<br /></span><br />
<em><strong>Please visit my blog Life With PH over at <a href="https://www.blogger.com/goog_99805089" target="_blank">Pulmonary Hypertension News</a> to read "<a href="http://pulmonaryhypertensionnews.com/blog/2016/08/01/4-things-not-to-say-to-someone-with-pulmonary-hypertension/" target="_blank">4 Things Not to Say to Someone with Pulmonary Hypertension.</a>"</strong></em>Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com0tag:blogger.com,1999:blog-6231807689994491595.post-3309193957184925942016-07-19T09:11:00.003-04:002016-07-19T16:12:37.362-04:00The Worst Advice You Can Give to a Pulmonary Hypertension Patient<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-FROyVgE2DUc/V44m9mXJxKI/AAAAAAAABRE/xckW9-BBdcwYke_B0jju1VX3ok6_ZF0EwCLcB/s1600/IMG_6099.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-FROyVgE2DUc/V44m9mXJxKI/AAAAAAAABRE/xckW9-BBdcwYke_B0jju1VX3ok6_ZF0EwCLcB/s320/IMG_6099.jpg" width="240" /></a></div>
I’ve spoken previously about the day that I was diagnosed with
pulmonary hypertension. There are a few moments that stick out from that
day that will probably stay engraved in my mind for eternity. When I
was first diagnosed, the doctor promptly gave me a <a href="http://pulmonaryhypertensionnews.com/pulmonary-hypertension-life-expectancy-2/">life expectancy</a>.
It couldn’t have come at a worse time. I was 25 and just starting my
career after working less than ideal jobs since the age of 15. I was
obviously devastated to hear that my life was ending during a time it
felt like it was just beginning. It felt like someone crumpled up
everything I worked so hard for and threw it in the trash. As I started
to cry my doctor said, “Any one of us could die at any time. I could die
in a car accident.” This was the first time I heard this expression,
but sadly, it wasn’t the last time.<br />
<br />
As the days, weeks, months,
and even two years have dragged on, numerous people have told me that
anyone could die at any point, that the future is promised to no one.
While I am aware of everyone’s mortality, living with a fatal illness is
a very different experience than the advice I have been given. I know
that the people who have said that “anyone could die at any moment” and
“the future is promised to no one” are attempting to comfort me.
However, these pieces of advice are often coming from a very privileged
source. The doctors who have told me this are able to work full days and
have a family. The people my age who have told me this are purchasing
their first homes and traveling.<br /><br />
The advice that “the future is
promised to no one” is often said in an attempt to equalize my situation
with the rest of the population. Unfortunately, I am not like the
majority of the population. I had about a one in a million chance of
developing idiopathic pulmonary hypertension. Because the disease is
considered rare, <a href="http://phightorflight.blogspot.ca/2016/02/accessibility-of-pah-therapies-in.html" rel="nofollow" target="_blank">Canada does not have access to less invasive medications that have been available on the market for nearly a decade</a>. Because PH is so rare, medications are very expensive, meaning that new medications are not always introduced in Canada, or <a href="http://phightorflight.blogspot.ca/2016/01/accessibility-of-pah-therapies-in.html" rel="nofollow" target="_blank">are not approved for funding.</a><br />
Pulmonary
hypertension causes damage to the heart and lungs, eventually leading
to organ failure and death. It is a progressive disease that leaves many
people breathless and disabled. I myself am disabled because of
pulmonary hypertension, and am oxygen-dependent for certain activities. I
was on oxygen 24/7 for over a year after diagnosis. Knowing that PH is
progressive, and that I might be that sick again, is very frightening.<br />
<br />
While
death is promised to us all, there is a difference between living with a
fatal illness and living without one. Although I try my best to live in
the moment, there is often a dark cloud hanging over me. I worry about
what will happen to me. I worry about the slow progression of the
disease leading to further disability and death. Life is filled with
difficulties and tragedies. However, not everyone will understand the
feeling of the dark cloud that living with pulmonary hypertension can
put over your life. Able-bodied people who say that “everybody dies” in
an attempt to over-comfort are forgetting one of the scariest things of
living with a fatal disease: the progression.<br />
<br />
In some ways, fatal
illnesses are almost romanticized by popular culture. There are so many
movies who have used this plot to write a love story. While I am very
lucky to have someone who has stood by me through all of this, I know
that having a fatal illness is not a selling point. It can create a lot
of chaos and <a href="http://pulmonaryhypertensionnews.com/pulmonary-hypertension-complications/">complications</a>.
My life revolves around medication, doctors’ appointments, tests,
restrictions, limitations, disability, and oxygen. I know that not
everyone is as lucky to have the kind of love I have in my life.
Life-threatening diseases are scary, and sometimes they chase people out
of our lives.<br />
<br />
I often feel like I am living a fine line between
quality and quantity in my life because I choose to do what I can while I
can still do it. While all of us will someday die, not all of us will
have to live with the burden of having a fatal illness, especially as a
young adult.<br />
<br />
What’s the worst piece of advice someone has given you about living with pulmonary hypertension?<br />
<br />
<i>*This article was originally posted to <a href="http://pulmonaryhypertensionnews.com/blog/2016/07/12/the-worst-advice-you-can-give-to-a-pulmonary-hypertension-patient/" target="_blank">Pulmonary Hypertension News</a></i> Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com0tag:blogger.com,1999:blog-6231807689994491595.post-48886666536729929902016-07-12T09:27:00.002-04:002016-07-12T09:27:51.576-04:00Pulmonary Hypertension and "The Spoon Theory"<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-MCFcYKcxe5E/V4TwOu-Bl6I/AAAAAAAABQw/Z4H3l_jPj7Aj8QLBT7JMzbyGfWnsuS6JACLcB/s1600/IMG_6670-300x300.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://1.bp.blogspot.com/-MCFcYKcxe5E/V4TwOu-Bl6I/AAAAAAAABQw/Z4H3l_jPj7Aj8QLBT7JMzbyGfWnsuS6JACLcB/s1600/IMG_6670-300x300.jpg" /></a></div>
Do you know what the Spoon Theory is? Have any of your friends called themselves a Spoonie?<br />
I
didn’t know what the Spoon Theory was until a few months after I was
diagnosed with pulmonary hypertension. I found out that I was Spoonie
after reading more about the theory. If you have a chronic illness, like
pulmonary hypertension, you might relate to the Spoon Theory as well. <br /><br />Read more about <a href="http://pulmonaryhypertensionnews.com/blog/2016/07/08/pulmonary-hypertension-and-the-spoon-theory-explained" target="_blank">Pulmonary Hypertension and "The Spoon Theory" over at Life with PH</a><br />
<br /><iframe allowtransparency="true" frameborder="0" height="535" scrolling="no" src="https://www.facebook.com/plugins/post.php?href=https%3A%2F%2Fwww.facebook.com%2Fpulmonaryhypertensionnews%2Fposts%2F638511902970726&width=500" style="border: none; overflow: hidden;" width="500"></iframe>Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com1tag:blogger.com,1999:blog-6231807689994491595.post-51682016864515250902016-07-08T10:06:00.000-04:002016-07-08T10:50:37.459-04:00Who Should Raise Awareness for Pulmonary Hypertension?I am excited to announce that I have a weekly column called "Life with PH" over at <a href="http://pulmonaryhypertensionnews.com/">Pulmonary Hypertension News.</a> Please be sure to visit the source below to read my first entry about my experience wearing oxygen in public, and whether it helped raise awareness for PH. <br /><br />Who do you think should be responsible for raising awareness for PH?<br />
<br />
<iframe allowtransparency="true" frameborder="0" height="540" scrolling="no" src="https://www.facebook.com/plugins/post.php?href=https%3A%2F%2Fwww.facebook.com%2Fpulmonaryhypertensionnews%2Fposts%2F636556833166233&width=500" style="border: none; overflow: hidden;" width="500"></iframe>Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com0tag:blogger.com,1999:blog-6231807689994491595.post-30301283991594494072016-06-30T08:24:00.002-04:002016-06-30T12:00:55.333-04:00PHighter Friday: Tina P.<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-csjc7Of3P4I/V3UNqi_0Y1I/AAAAAAAABPQ/cW8iAtFzYEYVnoTkE8hbJMwvpqrTa4dIgCLcB/s1600/Tina%2Band%2BJoel%2Btree.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://3.bp.blogspot.com/-csjc7Of3P4I/V3UNqi_0Y1I/AAAAAAAABPQ/cW8iAtFzYEYVnoTkE8hbJMwvpqrTa4dIgCLcB/s320/Tina%2Band%2BJoel%2Btree.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"> Pre-Transplant, <br />
during my stable years. </td></tr>
</tbody></table>
I met Joel in high school when I was 16 years old. We were young, selfish, foolish, naïve and completely unaware of what life had in store for us. I tell you this as he is an important piece of the puzzle that is my life. He is the most important piece. Back then, things were great! I was actively playing sports, attending school dances, was greatly involved in school committees, managed a part-time job and all while still living that crazy free-spirited teenager lifestyle. My only complaint health wise was that my left knee and surrounding area was always hurting. But, after a visit with a doctor it was confirmed that it was nothing more than a common sports injury called Patella Femoral Syndrome that would eventually go away. Or so we thought… <br />
<br />
After high school, Joel and I left our hometown in Sudbury for the big bright lights of Toronto where we were to further our studies in College. As starving students, walking was our ultimate mode of transportation. But when my walk to school and back started to get more difficult, I started to question whether there was something wrong with me. Joel, however, thought that I might just be out of shape and suggested that I go for a jog with him. And so I tried, and failed royally. It was then that I knew I had to see a doctor. Shortly after, I was diagnosed with a mild case of asthma and was sent on my way with puffers and such to treat it. Me not being a doctor, did not think anything of it. Many weeks had gone by and I still had yet to see any improvement in my breathing, even while on medication. One hot summer day, I had what I thought was an asthma attack while working outside at work. I immediately rushed over to my bag where my Ventolin had been hiding and sucked in a few puffs. But it was not giving me the relief that this medicine was designed to do. In fact, it was making my breathing worse! It was then that I knew there had to be more to this. So I phoned up my family physician and explained how the medicine was not helping any of my symptoms and he suggested I stop taking them. Unfortunately, he never pursued or investigated any further. This seemed odd to me and was quite frustrating, but as a young adult still finding her way into the world, I didn’t want to question my physician. After all, he went to medical school, not me. <br />
<br />
Not too long after being removed from the meds, I woke up one night with excruciating sharp pains in the chest which only got worse anytime I tried to lie down. At this point, Joel was getting very concerned and took me to emergency. After several tests were done, the doctors at the hospital discovered that I had what they called an over-inflated lung. Basically, my lungs were being aggravated by something, but they just could not tell what. And so they decided to refer me to a respirologist. <br />
<br />
I saw Dr. Born for the very first time in September of 2003, exactly one year after I started experiencing symptoms. He immediately sent me for a few tests including a heart echo, where they finally discovered that I had Pulmonary Hypertension. But Dr. Born was not convinced that this was my final diagnosis. He truly believed that my PH was secondary to something else, and did further investigations. His suspicions were leaning towards me possibly having a cancer called Mesothelioma or what most people know it as “the asbestos cancer." Now this truly did not make any sense to me as I had never in my life been exposed to asbestos, but weirder things have happened. <br />
<br />
I was referred to Dr. Hutcheon, a surgeon who would perform a biopsy on me to either prove or disprove this theory. Dr. Hutcheon however, had some reservations about this possible diagnosis and wanted to explore a notion of his own. What if all this was due to blood clots in the lungs? So before putting me through an invasive surgery, he opted to look into his idea first by sending me for a chest CT scan with dye. Low and behold, he was right! The test showed multiple micro blood clots just chillaxing in my lungs having a merry old day. Thus, I got a final diagnosis of Chronic Thromboembolic Pulmonary Hypertension or CTEPH. <br />
<br />
I was immediately sent to the Toronto General Hospital Thrombosis Unit, where they had already begun the steps necessary to start me on a much needed blood thinner treatment. But one mystery still remained…where were these clots coming from? Many tests and examinations following that proved to have no impact at all on unlocking this mystery. I had no family history of clotting, no weird abnormal gene in my blood and my recent activities showed it to be impossible for it to be a lifestyle thing. We were all clueless. Meanwhile, as the focus was primarily on the source of my blood clots, my PH was being completely put on the back burner and was not being treated. After hounding my doctors on that very fact, they finally referred me to a respirologist named Dr. Granton who they had mentioned to me was, and I quote “a doctor that had an interest in PH."<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-7pCQuLgUt7Q/V3UNxQ28zGI/AAAAAAAABPY/mmtIsosSoCsD3V5uo7J5W4eWNt8wGtnDACLcB/s1600/IMG_0249.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://4.bp.blogspot.com/-7pCQuLgUt7Q/V3UNxQ28zGI/AAAAAAAABPY/mmtIsosSoCsD3V5uo7J5W4eWNt8wGtnDACLcB/s320/IMG_0249.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">6 months post transplant:Went up and down <br />
what felt like a million stairs at this arena. <br />
Did it without feeling short of breath at all</td></tr>
</tbody></table>
To be honest with you, before I met Dr. Granton, my knowledge on the severity of PH was pretty slim. I didn’t even know what PH was until I was diagnosed! It never occurred to me once that this was the very thing that would one day drive my life towards the path of a double-lung transplant. I mean truly everyone was so focused on the blood clots and their creator that I guess in some ways it told me that PH was nothing to be concerned about. Boy was that an understatement on my part!<br />
In the midst of this mess, Joel and I decided to move back home to Sudbury to be closer to family. We were young, afraid and unsure of what to do next. <br />
<br />
The years following were a non-stop roller coaster ride of ups and downs. I had a wacky amount of tests done, saw more than my share of doctors and had way too many hospital stays. And still, no explanation was found on how I got those blood clots in the first place. Many different treatments were tried and played around with to treat both my CTEPH and my embolisms. Dr. Granton even tried his luck on giving me Viagra, but it actually unfortunately made me feel worse and so the medicine was stopped. Throughout those fun filled years, we also discovered yet another mystery; there were random holes slowly forming in my lungs and not one doctor had a clue what was causing it. After several tests were done, one open-lung biopsy, one needle biopsy and what felt like a million sputum samples, they discovered that it was a strange bug that was causing mayhem in my lungs and was the source of all these holes. It is called Mycobacterium Xenopi and it was making itself way too comfortable for my liking. Apparently lung tissue was its food of choice. A hard core antibiotic treatment was in order and it took a whole two years to finally kiss it goodbye! To this day, the doctors still have no idea where I picked up that sucker. <br />
<br />
On top of all that, my knee problems had re-emerged with a killing and it was not letting up. In fact, the pain was starting to spread to my calf, my thigh and basically my entire left leg. This problem was supposed to dissipate in my twenties, but it was only getting more aggressive. This was seriously starting to concern me and so after a visit to my family physician, he decided to send me to physiotherapy in hopes that it would help. It was there that I learned that my knee pain/swelling was not acting at all like one affected by Patella Femoral Syndrome and that none of the physio therapist had ever seen the likes of it. Meaning, they had no idea what I had, but they were certain it was not Patella Femoral Syndrome. What was I supposed to do with this information? <br />
<br />
By November of 2006, Joel and I had had enough with our lives completely evolving around my <br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-oRgES9WTYh0/V3UN8-aSyKI/AAAAAAAABPg/npZGBICp2ggapm7OMsXWE8DR4B6DXBE8wCLcB/s1600/Enjoy%2Blife%2Bto%2Bthe%2Bfullest.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://2.bp.blogspot.com/-oRgES9WTYh0/V3UN8-aSyKI/AAAAAAAABPg/npZGBICp2ggapm7OMsXWE8DR4B6DXBE8wCLcB/s320/Enjoy%2Blife%2Bto%2Bthe%2Bfullest.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">4 1/2 months Post-Transplant, bought this cup <br />
specifically because of the saying. So appropriate.</td></tr>
</tbody></table>
health. We desperately needed a change and we wanted to finally start living! So we picked up our bags and made the grand move to Ottawa. Why Ottawa you ask? The better question is “Why not?”. <br />
After finally getting settled in our new home, my thoughts started to drift towards what the physio therapists had said about my knee not being my original diagnosis and so I decided to finally get a second opinion from another orthopedic surgeon, Dr. Habib. Upon meeting me, he immediately decided to send me for the one test that I had yet to go for, an MRI of the legs. I was truly relying on this test to give us some kind of answers as I was frankly getting tired of my body producing so many unsolved mysteries. My body unfortunately did not want to wait the few weeks till my appointment as the pain was progressively getting worse and was actually starting to affect my ability to walk. <br />
<br />
Joel acted out of concern once again, and took me to emergency. Over the years, I have dealt with many difficult situations involving doctors who are unaware on how to approach my rare diseases and this emergency visit was no different. After explaining to the doctors not only the pain I was feeling in my left leg, but my entire health situation, they unbeknownst to me, sent me for what is called a D-Dimer blood test. Without giving me any explanation at all, in a very panicked manner, they arranged for me to see the Ottawa Thrombosis Clinic the next day. In fact, they said if I didn’t go first thing in the morning, they would admit me to hospital. Like many, I am not a very big fan of the accommodations a hospital can offer and so I gave them my word and went on my merry way. The problem was that the much anticipated MRI was scheduled for that very morning! So I decided to go to the MRI first. Now this is probably not one of my proudest moments, but in all honesty I truly believed at the time that the ER doctors were overreacting slightly. I mean, it would not have been the first time and in my defense, they really didn’t explain to me why they needed me to go and what the test results showed. So going by that, I really felt that the MRI was more important. Of course when I didn’t show up at the thrombosis clinic first thing in the morning, they immediately called me to express how important it was that they see me. And so Joel and I made our way there. <br />
<br />
Once we arrived, it was clear to me that the ER doctors failed to mention some important information to me as I was instantly lectured by both the admin staff and the doctor on how irresponsible it was to disobey the doctor’s orders. Apparently, my D-Dimer test results were astronomically high which indicated that I was perhaps clotting. And after a leg doppler was performed, it was indeed confirmed that I had a DVT in my left leg, which would absolutely explain the unbearable pain. But I was on a fairly high dose of blood thinners, so how was this possible? Well apparently that dose was just not high enough. From that moment on, Dr. Forgie became my regular hematologist and would for years to come be involved in my care. After a few adjustments to my meds, Joel and I were finally sent home. <br />
<br />
In early February of 2007, not even a month after my first encounter with Dr. Forgie, I landed yet again in emergency with severe chest pains and a serious lack of oxygen. After a chest CT with dye was done, the doctors were able to indisputably tell me that I had new blood clots to the lungs. So even with the new dose of blood thinners, I was still clotting. At this point, Dr. Forgie was extremely concerned and was determined to find the source of the clots as she felt it was the only way to solve this matter. By this time, the results to that very important MRI I had gone for was finally in and it just so happens that Dr. Forgie had access to it because it was done at the hospital. A lucky find indeed, as it showed that I had a very large Arterial Venous Malformation(AVM) in my entire left leg. What is this, you ask? It’s a knotted mess of extra veins and arteries all balled up together. It’s very rare and is mostly found in the brain, and so to find one in my entire left leg was definitely an interesting find. Apparently, I was born with this lovely thing and it has been shooting baby micro clots up to my lungs since birth. But as the clots were very tiny, it took a whole 19 years before my body seriously started reacting to it. The only true indication that I had, but would have never known was the pain I felt in my leg back in high school. Who would have thought? So, an IVC filter was inserted to protect my lungs from any new clots and another adjustment was made to my blood thinners. <br />
<br />
The months following felt like a constant vicious battle of me vs. the blood clots. New clots were still forming and so my medicine required even more changes. My IVC filter had magically shifted which meant that it needed replacing and because of the extremely high dose of blood thinners I was on, bleeding was starting to become a serious problem. Life was definitely challenging us in ways we had not even imagined.<br />
<br />
In the midst of all that drama, my PH care was transferred over to the clinic in Ottawa where I met Dr. Mielniczuk and Dr. Chandy for the very first time. There, they decided to try treating my PH with Bosantan or Tracleer. Unfortunately, after only being on this medicine for a few months the doctors decided to stop it as it was not producing the results we expected and was actually causing severe headaches. So once again, my PH was being untreated, but it was manageable.<br />
<br />
From 2008 on, years would pass with my health being pretty stable. I did incredible things and am so grateful for those years! I worked a full time job, traveled to some amazing places, experienced exciting new things like skiing, and did my best to try everything and anything at least once. I enjoyed and cherished every waking moment with friends and family, and had quite a few good laughs as well as some meaningful conversations. I watched as my wacky childhood friends grew up, got married and became extraordinary mothers. My baby brother also made me an aunt of three and I am still very impatiently waiting for more nieces and nephews that I can spoil. But probably the most important celebration that occurred in those years would have to be when I finally got married to the man of my dreams, my high school sweetheart; Joel. We also bought our first home, which was oddly enough down the street from my brother. Life was good and we were so proud of ourselves for learning the tricks of living with CTEPH. In fact, we thought we were pros at it! We had it completely under control. But how can you possibly control something like that?<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-zjI62guW8Rk/V3UOPt8VrpI/AAAAAAAABPw/gCJN1xtHb2AiRWoo2q4UJrcG2uRwM4IdQCLcB/s1600/mask.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://4.bp.blogspot.com/-zjI62guW8Rk/V3UOPt8VrpI/AAAAAAAABPw/gCJN1xtHb2AiRWoo2q4UJrcG2uRwM4IdQCLcB/s320/mask.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">3 months Post-Transplant, Bought myself a fancy mask to help <br />
with
germ preventions. As my immune system is suppressed <br />
now, this is an
unfortunate reality of being post-transplant.</td></tr>
</tbody></table>
By the end of June of 2014, I was finally taking a well needed vacation from work. Joel and I had no special plans, but to relax and enjoy the beautiful June weather here in Ottawa. In essence, we were doing a stay-cation. It was something I was so looking forward to as the past few months had been extremely busy in both life and work, and I was getting tired. My breathing even seemed to be slightly affected, but I pond it off as me needing this wonderful time of doing absolutely nothing. Unfortunately, by the end of that week I didn’t feel any better. In fact, I felt way worse! In the past, it had always been my clotting issues that had given me a run for my money and so I assumed that whatever was making me feel this terrible must have something to do with that. So I phoned up Dr. Forgie and was seen that day. As per usual, she sent me for a chest CT scan with dye to see if any new clots had emerged, however, the results showed something entirely different. My heart seemed larger and was showing signs of my PH having worsened. My PH doc Dr. Chandy was immediately notified and an appointment to see him along with a few other tests were scheduled. He also had mentioned starting me on this new drug that was specifically catered to CTEPH patients and was supposed to make me feel fantastic. It was called Adempas. Sadly, I never made it to those appointments as after another visit to the emergency department I was admitted to hospital. I spent several weeks in and out of hospital that summer. I was however still put on the Adempas treatment, but after a few months of it and the results not being as expected, Dr. Chandy decided it was time to look into other avenues.<br />
<br />
So an appointment was scheduled to see Dr. Rubens so that I may be evaluated for the infamous Pulmonary Thromboendarterectomy (PTE) surgery, where they would remove those nasty clots permanently. I had been evaluated for this before but was told that my blood clots were too small and too far to reach and so I did not qualify. At this point, there was no harm in trying again, but regrettably the results were the same. This is finally where the subject of a double-lung transplant came into the picture. By this time I was 31 years old.<br />
<br />
Being told that I needed a double-lung transplant in order to continue living was unlike anything I have ever experienced before. <br />
<br />
I felt helpless, scared and yet totally ready for a fight. After all, I had been fighting this battle for a very long time and I was not about to give up now. So in April of 2015, Joel and I picked up our bags once again and made the grand move back to where it all began, Toronto. Here, I would be put on the transplant list and would wait for that amazing life-saving gift. Why was the move necessary you ask? Well, there are only 6 hospitals in Canada that perform this miraculous surgery and Toronto General Hospital, being the closest one to me, requires all patients to live within a 2 hour proximity to them. Finally, after a few complications and bumps in the road, I was officially listed on June 22 2015. <br />
<br />
Although I expected the wait to be long and agonizing, it surprisingly went by pretty fast. The hospital actually keeps you quite busy with appointments and physio that it truly helps fill up those days for you and keeps your mind at ease. After a few months of being listed, my health had deteriorated even further and I was admitted to hospital. At this point, the doctors decided that my heart was under way too much stress and needed a little help until a matching set of lungs came in for me. They decided to put me on ECMO, a device used to help deliver oxygen to the body. This would give my heart the much needed break it was longing for. Dr. Granton was back into the picture now and was the lucky one to shockingly tell us that the machine would be hooked up directly to my heart and not through the neck or groin as Joel and I had researched. This meant open heart surgery. But at this point, what did I have to lose? So I put my big girl panties on and was rolled into to surgery. I was on this machine for 6 days, when the doctors came into my hospital room with best news in the world; they had finally found a set of lungs for me. <br />
<br />
I am now 6 ½ months post-transplant and I feel amazing! Words cannot express enough how grateful I am to my donor and their family for this selfless gift they have given me. They have given me time to share more incredible adventures with my family and friends, especially my truly outstanding husband Joel. Remember when I told you that he was the most important piece of this puzzle? It’s because without him I would not have survived this so effortlessly. Without his words of encouragement, his love, patience and understanding, this journey would have been a lot more difficult. I say this because so many people focus on the patient; on their strength and their will and their ability to get through any difficult matter. Yet a lot of these people would not get through these ugly times without the love and support of another. I was lucky enough to have more than one person by my side, including my super amazing parents who sacrificed so much and went above and beyond just to be there for me. But as my husband, Joel was at the center of it all. He was there for me when I could not walk anymore and needed to be pushed in a wheelchair. He was there for me when bending down was virtually impossible without passing out and I needed someone to tie my shoes for me. And he was there for me when life took a sudden turn and we needed to put everything on pause and head to Toronto for transplant. And so this is my homage to all support people out there, THANK YOU FOR EVERYTHING YOU DO! <br />
<br />
Joel and I are now back in Ottawa and I feel like I can achieve anything. I no longer fear stairs, or hills or parking lots or walking in general. I get excited over things like cleaning the house or being able to NOT park in handicap parking for once. I can play with my nieces and nephews without running out of breath and I can sing and dance again! <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-ndk7dabVFhU/V3UOB4SvS6I/AAAAAAAABPo/XZuKsOC-NBEcrCz4Mz4uxrNSahQSctxmgCLcB/s1600/be%2Ba%2Bdonor%2Bgala.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://4.bp.blogspot.com/-ndk7dabVFhU/V3UOB4SvS6I/AAAAAAAABPo/XZuKsOC-NBEcrCz4Mz4uxrNSahQSctxmgCLcB/s320/be%2Ba%2Bdonor%2Bgala.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">4 months Post-Transplant, <br />
Went to gala for organ donation awareness. <br />
Danced the night away here!</td></tr>
</tbody></table>
If I could give anyone who is currently going through the transplant process right now any words of wisdom it would be this… I know it’s scary and you may feel at times like you can’t do it, but the truth is YOU CAN! Trust me when I say this, it is totally worth it! Just stay positive and remember what’s waiting for you on the other side, being able to breathe again, being able to live again! You are strong enough and you are worthy. <br />
<br />
Although my journey may seem like a long list of unfortunate events I can honestly say that I am in a way grateful for them. I am proud of my story and how it has shaped me as a person. I would not be who I am today without it and am so happy with the “me” that I have become. Every scar on my body has a tale to tell and will forever be a reminder to me on how precious life really is, and how courageous and strong I can truly be even the worst of times. <br />
<br />
*<i>Editor's note: Did you know it only takes 2 minutes to register to become an organ donor in Ontario? Check your status or sign up here <a href="http://beadonor.ca/">http://beadonor.ca/</a></i>Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com0tag:blogger.com,1999:blog-6231807689994491595.post-84951958319946736552016-06-23T18:47:00.001-04:002016-06-30T11:51:37.477-04:00How My Diagnosis is Hurting Me <div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-wqOaK5-5AOk/V2xWTN2EALI/AAAAAAAABO4/B9TdbGbgb0Eldd9RHDn6v8j1H-_3zvrdgCLcB/s1600/Image.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://4.bp.blogspot.com/-wqOaK5-5AOk/V2xWTN2EALI/AAAAAAAABO4/B9TdbGbgb0Eldd9RHDn6v8j1H-_3zvrdgCLcB/s320/Image.jpg" width="240" /></a></div>
"What's wrong with me?"<br />
<br />
This was a question I found myself asking only a couple of months before being diagnosed with Pulmonary Hypertension. Upon diagnosis an expiration date was stamped on my back like a carton of milk. I was officially diagnosed with Stage 3-4 'Idiopathic Pulmonary Arterial Hypertension.' The word idiopathic is a fancy word meaning that the doctors have no idea why I developed this disease. There was no rhyme or reason.<br />
<br />
The word 'idiopathic' attached to my medical files has almost felt like a curse. <br />
<br />
Upon diagnosis, blood work was drawn to see if the PH was caused by a secondary condition. But this only weeds out diseases that are detectable through routine blood work. Often times, PH is caused by a secondary disease. If the secondary disease is managed, it can potentially help stabilize the condition of the PH. <br />
<br />
I have tried very hard for over two years now to seek the help of specialists outside of the PH scope. I have all these loose ends and puzzle pieces of different symptoms and clues. They all seem to overlap into a grey area, none of which really fit into the diagnosis of PH. <br />
<br />
Unfortunately, as soon as another specialist reads the words 'idiopathic' and 'fatal' on my medical chart, the appointment ends. I saw an endocrinologist a few months after diagnosis. She told me that I had probably about 5 years to live, and that there was nothing she could do for me. That was the end of the appointment, without even asking about my symptoms or looking through my files. Since then I have had many failed attempts with other specialists, but I continue to keep trying to find answers.<br />
<br />
All my medical files from the first year of my diagnosis start with the same line. "Serena refuses to take her one medication as she believes it makes her worse. <i>Serena has improved since her last visit.</i>" I look back at the months leading up to diagnosis and I started taking a medication that can interfere with the autonomic/sympathetic nervous system- although this is extremely rare. (PH- by the way, is also extremely rare.) The autonomic nervous system controls certain functions such breathing and your heart rate. <br />
<br />
I explained to every doctor that this medication made me ill. It would make me bedridden within a matter of days after taking it, even after I started making progress. Each doctor told me to continue taking it, but I could feel it killing me. I was prescribed nearly 12 different variations of this medication until I had enough. <br />
<br />
I stopped taking it. I switched medical teams. My 6 minute test improved by 100 meters. (This typically only happens in PH 3 months after starting a new medication.) The last time I had started a new medication at this point was a well over a year ago.<br />
<br />
There are handfuls of puzzle pieces to my diagnosis that don't add up. <br />
<br />
The PH progressed at an alarming rate, which isn't impossible, but very unusual for PH. It takes about 2-3 years for most patients to receive a diagnosis of PH, which unfortunately, allows the disease progress to a later stage. (Sometimes the progression of the disease can be escalated by something like pregnancy.) For me, I developed symptoms in a matter of months after starting this medication and a plane ride. Specialists tried to convince me that I have had it for years, but before June of 2013 I was working at the busiest bakery in town lifting heavy boxes up a rather large stair case- something that would be very difficult for someone to do with PH. At one point in my life I was carrying drum kits and guitars, and loading them into a van. I worked out regularly with no symptoms up until October 2013. <br />
<br />
A PH specialist that I was seeing said that I may have POTs because of a few symptoms I show. My regular bloods pressure is 80/50 which is abnormally low. (My blood pressure was this low before starting PH meds, which can lower your blood pressure.) My blood pressure also drops when I stand. My heart rate increases by over 30 beats, and my o2 levels drop. So many of my symptoms overlap with other invisible diseases, making them harder to diagnosis. POTs can also be caused by a nervous system dysfunction. <br />
<br />
One of the main causes for PH is a congenital heart defect. Upon diagnosis I learned I had a valve open in the chamber of my heart, and that the hole was rather large. I've heard conflicting opinions over and over again about this hole. It has been so confusing to hear one specialist say I will die quicker without oxygen use, while another one said I am fine because of that hole. A cardiologist said that if I got the hole repaired there is a chance I could be in better shape. I was never given a cardiologist after my diagnosis despite the abnormalities that appeared in various tests. Despite the hole in my heart, I was still given the diagnosis of having an 'idiopathic' disease.<br />
<br />
I also had a fistful of other unexplained symptoms that are typically tied to sympathetic nervous system. I remember laying in the hospital bed after my right heart cath telling the doctors that my feet and arms were tingling. They told me that it had nothing to do with PH and that it was fine. <br />
<br />
I've had night sweats, muscle weakness, the inability to regulate my temperature, intolerance to the heat and cold, nerve pain in my thighs and head, along with having my blood pressure drop upon standing. My blood work has also came back irregular for markers for various things, but again, the word 'idiopathic' stops any specialists from trying to put together these puzzle pieces. I sometimes feel like they see me like a lost cause. <br />
<br />
In March of this year I finally saw an rheumatologist. She took a look at the blood work done from the very day I was hospitalized and diagnosed, nearly two and half years ago. She laughed a little and pointed something out to the student doctor. She then told me that I wasn't crazy, that something was definitely abnormal. I had a high amount of white blood cells. She told me that she had a gut feeling that I had Lupus, and I was immediately put on some heavy duty imunno-suppressants. I received a phone call three weeks later informing me that I didn't have Lupus, or any other rheumatoid diseases. I am still on the Lupus medication, just to see what happens. <br />
<br />
I have come into my appointments with research papers, along with written timelines and events leading up to my diagnosis. I bring up my strange reaction to do different medications. They are a little bread crumbs leading me to somewhere. Unfortunately, my desire to be proactive in my treatment has not been with an open mind from the specialists I have seen. Several times I have heard "you have idiopathic PH, sweetheart" as if that is a concrete diagnosis. <br />
<br />
The word idiopathic relates to any disease that arises spontaneously with an unknown cause. To have it treated as if it a concrete diagnosis that answers to all of my symptoms, and has been diagnosed through blood work, is beyond frustrating. <br />
<br />
Thankfully, my family doctor is a wonderful and patient man. From the very start of my diagnosis he has said that he would do whatever he could to help me. I recently went to him with my concerns, and he is happily referring me to several different specialists. He even suggested that I research different specialists to see what one would have the most interest in my case. I have been referred to other specialists before, I think they feel scared to over step over any other specialist's work and diagnosis. <br />
<br />
It is discouraging, but I will keep trying until...<br />
<br />
Truthfully, a large part of me is frightened that my PH will not be managed in an optimum way if my other issues are not addressed. It is clear to me that they over lap, and it is terrifying to think I could get sicker because of this. I hate thinking that I might get sicker, or even worse, all because no one will listen to me. All because they see the word 'idiopathic.' That giant question mark has made it impossible to get a real second opinion, or another diagnosis from another specialist.<br />
<br />
I have already had one specialist tell me that I am "not crazy." I try to stay hopeful that someday my puzzle pieces will make sense to a specialist, and that I can get better treatment to help me stay here and healthy for as long as possible. Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com6tag:blogger.com,1999:blog-6231807689994491595.post-72856047546886602042016-06-22T10:18:00.000-04:002016-06-30T11:52:04.886-04:00Kawaii Box Review and Giveaway<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-OeHUbEN8z6E/V2qZfSiknrI/AAAAAAAABNA/eteVy0gLHwUgOGlGH6-DK-EQSl_4vsDegCK4B/s1600/IMG_6473.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-OeHUbEN8z6E/V2qZfSiknrI/AAAAAAAABNA/eteVy0gLHwUgOGlGH6-DK-EQSl_4vsDegCK4B/s320/IMG_6473.jpg" width="240" /></a></div>
My best friend Melissa got me a 3 month subscription to <a href="http://www.kawaiibox.com/" target="_blank">Kawaii Box</a> back in February. It was such a great gift idea because I kept getting presents well after my birthday passed. (Who wouldn't love that?) As someone living with Pulmonary Hypertension some days, weeks and months are more challenging than others. Having a little present arrive at random has certainly helped brighten some of my more challenging days. <br />
<br />
In an <a href="http://phightorflight.blogspot.ca/2016/04/subscription-box-review-be-brave-box.html" target="_blank">earlier post</a> I wrote about how subscription boxes are a great gift
for someone living with a chronic illness. It also makes a great gift
to give yourself. Now you have the chance to get your very own Kawaii Box!<br />
<br />
Kawaii Box was kind enough to send me their May 2016 box to review<b>. <i>Kawaii Box also wants to send one of their boxes to one my readers, so please be sure to check the bottom of the post for giveaway details!</i></b><br />
<u><b></b></u>
<u><b><br />What is Kawaii Box?</b></u><br />
Kawaii Box is a monthly subscription box. Each box contains about 10-12 handpicked kawaii items from Japan and Korea. Kawaii Box often includes a mix of Japanese candy, accessories and stationary. <br />
<br />
<u><b>How Much Is Kawaii Box?</b></u><br />
<a href="http://2.bp.blogspot.com/-pPRuleEtQs4/V2qV7k5_kuI/AAAAAAAABL0/ZXPMuTkkV3wFMtu2blE3KzX4Y2-mTGoYgCK4B/s1600/IMG_6474.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a>Kawaii Box is $19.80 USD a one month subscription. It also includes free shipping world wide!<br />
<br />
<u><b>Kawaii Box May 2016 Review</b></u><br />
<a href="http://3.bp.blogspot.com/-FWNtZpLboyc/V2qWK9vLabI/AAAAAAAABL8/D6vxXMagx5I8JvK2EqA4KhWl0qxPuxrqQCK4B/s1600/IMG_6478.jpg" imageanchor="1"><img border="0" height="320" src="https://3.bp.blogspot.com/-FWNtZpLboyc/V2qWK9vLabI/AAAAAAAABL8/D6vxXMagx5I8JvK2EqA4KhWl0qxPuxrqQCK4B/s320/IMG_6478.jpg" width="240" /></a><br />
Above is a picture of the outside of the Kawaii Box. Even the shipping box is very 'kawaii' (a Japanese word for cute.)<br />
<br />
<a href="http://2.bp.blogspot.com/-ByHyvNbEE5E/V2rKDp0LDiI/AAAAAAAABNU/CiuWMwqoSKQG3Uhe7VsH5WpNkTThgss3QCK4B/s1600/IMG_6474.jpg" imageanchor="1"><img border="0" height="320" src="https://2.bp.blogspot.com/-ByHyvNbEE5E/V2rKDp0LDiI/AAAAAAAABNU/CiuWMwqoSKQG3Uhe7VsH5WpNkTThgss3QCK4B/s320/IMG_6474.jpg" width="240" /></a><br />
Here is glimpse of what is inside the May 2016 Kawaii Box. Everything arrived in perfect condition, and each box comes with a 'thank you' card that describes each item in the box. Items are wrapped in tissue paper covered in hearts. The box also includes details about how you can take a picture of your box for the chance to win another Kawaii Box! <br />
<br />
<a href="http://1.bp.blogspot.com/-nuk0q_mzvQg/V2rKZEVYmCI/AAAAAAAABN8/eRBSP4dFDXkDbYKIlZ_ZBl2EaQnfcJoJwCK4B/s1600/IMG_6475.jpg" imageanchor="1"><img border="0" height="320" src="https://1.bp.blogspot.com/-nuk0q_mzvQg/V2rKZEVYmCI/AAAAAAAABN8/eRBSP4dFDXkDbYKIlZ_ZBl2EaQnfcJoJwCK4B/s320/IMG_6475.jpg" width="240" /></a><br />
The May box included the following stationary items:<br />
- Lucky Star Origami Papers: the back includes small pictures how to create star shaped origami with the papers.<br />
- Puffy Dessert Stickers<br />
- Hello Kitty Pencil Sharpener <br />
- Animal Icon Stamp Set<br />
- Pastel Bear Pen: after having received several Kawaii Boxes, I can attest to how much I love the pens they include in their boxes. They are perfect for writing letters and doodling. (The ink comes out very smooth!)<br />
<br />
I have several pen pals and the stationary items in the Kawaii Box are always great for creating personalized letters and mail. <br />
<a href="http://1.bp.blogspot.com/-iyZFxbRljJw/V2rKWdAPkhI/AAAAAAAABN0/mBC1sZQDIuU5lMsGG8qsPKhUq6e-v6f6QCK4B/s1600/IMG_6476.jpg" imageanchor="1"><img border="0" height="320" src="https://1.bp.blogspot.com/-iyZFxbRljJw/V2rKWdAPkhI/AAAAAAAABN0/mBC1sZQDIuU5lMsGG8qsPKhUq6e-v6f6QCK4B/s320/IMG_6476.jpg" width="240" /></a><br />
For snacks, the box included:<br />
- Anapanman Corn Rings<br />
- Kasaugai Chibi Vege Remune Candy<br />
The above picture also includes heart shaped silicon bracelets that were also featured in the May box.<br />
<br />
<a href="http://4.bp.blogspot.com/-1jMUoA9-BB4/V2rKbxXE-9I/AAAAAAAABOE/hN9OHqOA_HQKEx2Ulp78_teElNwItTi8wCK4B/s1600/IMG_6477.jpg" imageanchor="1"><img border="0" height="320" src="https://4.bp.blogspot.com/-1jMUoA9-BB4/V2rKbxXE-9I/AAAAAAAABOE/hN9OHqOA_HQKEx2Ulp78_teElNwItTi8wCK4B/s320/IMG_6477.jpg" width="240" /></a><br />
The fun accessories included in the Kawaii Box for May 2016 are:<br />
- Cute Animal Socks<br />
- Kawaii Girl Coin Purse<br />
- Kitty Doughnut Squishy: My favorite item! It resembles Hello Kitty and is perfect to squish if you feeling nervous or anxious....or you can squish it just for fun too!<br />
<br />
<a href="http://3.bp.blogspot.com/-3TUye5H_5O0/V2rKetDISpI/AAAAAAAABOM/MDlmJqydu5Yj5Fr9lrtvMMwePn6bg_QvwCK4B/s1600/IMG_6449.jpg" imageanchor="1"><img border="0" height="320" src="https://3.bp.blogspot.com/-3TUye5H_5O0/V2rKetDISpI/AAAAAAAABOM/MDlmJqydu5Yj5Fr9lrtvMMwePn6bg_QvwCK4B/s320/IMG_6449.jpg" width="240" /></a><br />
The last item included in the box is this Fluffy Pom Pom Key-chain. I tried to take a picture that would should off the shape and puffiness of the pom pom.<br />
<br />
Kawaii Box has been one of my favorite subscription boxes. The stationary items are perfect for anyone who has pen pals, or likes enjoys being creative. The snacks are always very fun as well. Some of the previous Kawaii Boxes I received included interactive snacks that you make, which is really cool. It makes for a fun activity with a friend or by yourself. <br />
<br />
As mentioned before, the Kawaii Box ships for free anywhere in the world which is a really good deal for a subscription box. It can take several weeks to receive an item because the box ships directly from Singapore. I have contacted their customer care about some of my boxes because some took longer than receive than others, and their staff are very helpful and friendly. <br />
<h2>
<u><b>Kawaii Box Giveaway</b></u></h2>
<b>There will be a <a href="http://www.kawaiibox.com/" target="_blank">Kawaii Box</a> give away on my <a href="https://www.facebook.com/PHightorFlight" target="_blank">Facebook Page</a>, but you may also enter <a href="https://www.rafflecopter.com/rafl/display/1363d2e42660/">here</a>. To win a Kawaii Box of your own please enter the contest here: </b><a class="rcptr" data-raflid="1363d2e42660" data-template="5505a1afbbd760130b3865f0" data-theme="classic" href="http://www.rafflecopter.com/rafl/display/1363d2e42660/" id="rcwidget_wqruvndu" rel="nofollow">Kawaii Box Giveaway</a>
<script src="https://widget-prime.rafflecopter.com/launch.js"></script>
<br />
<br />
<h3>
<i><span style="color: #6aa84f;">Good luck!</span></i><script src="https://widget-prime.rafflecopter.com/launch.js"></script></h3>
Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com0tag:blogger.com,1999:blog-6231807689994491595.post-3556505887348508772016-06-03T12:35:00.002-04:002016-06-30T11:51:13.733-04:00Are We Missing the Point? How Gord Downie Helped Change the Way I Face My Illness<div class="MsoNormal">
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-</style>On May 24<sup>th</sup> Gord Downie and his doctor from <a href="http://sunnybrook.ca/foundation/content/?page=areasofneed-home&gclid=Cj0KEQjw1cS6BRDvhtKL89em1oIBEiQAtZO5x7EQ6fprW0RSonN24EGe5jRsOr8AHxJ3FRU2qLklm14aAl-t8P8HAQ" target="_blank">Sunnybrook</a> Hospital in
Toronto confirmed that he was diagnosed with terminal brain cancer. Their
report stated that Downie had been dealing with the very serious disease
privately since December 2015. Later that week, the Tragically Hip, a band that
Downie has been performing with for over 20 years, announced that they plan to
have a tour this summer.<br />
<br />
Long-time fans were obviously heart-broken to hear about Downie’s diagnosis,
making purchasing tickets for their summer tour a more difficult endeavor.
Presale tickets have sold out in less than two minutes. In fact, presale had
sold so quickly that The Tragically Hip added four more tour dates to
accommodate to the predicted madness that will happen as I write this article-
the public sale of their tickets.<br />
<br />
Fans are obviously upset over what has happened over the sale of The Tragically
Hip’s 2016 summer tour. Other ticket outlets have been purchasing large
quantities of the tickets available during the presale, only to resell the
tickets at more than 5 times the cost of the original price of tickets. Ticket
scalpers are obviously taking gross advance of a sensitive situation that
should be treated with the utmost respect. To make matters worse, a portion of
the original ticket sales is being donated to Sunnybrook Hospital. <i><b>Who is
profiting from the resell of tickets at nearly 5 times more their original
value? </b></i><br />
<br />
There have been on going news stories regarding the foul play made by the
ticket scalpers. Fans have flooded social media to express their anger at
ticket scalpers. Some have gone so far to make online petitions to protest the
resale of tickets at such a high price. Tickets are going for over $8,000 USD-
making purchasing a ticket from a scalper nearly impossible for the average
Canadian. Scalpers are trying to profit off of someone’s illness, and are using
bots to take away tickets from the average hard working fan. It is wrong- so outrageously
wrong. <br />
<br />
<i><b>But are we missing the point?</b><span style="mso-spacerun: yes;"><b> </b> </span></i><br />
<br />
Reports on the resell of tickets by scalpers flooded social media and news
outlets almost immediately after Downie shared his diagnosis. While it is iniquitous
that ticket scalpers are profiting more than the band, and the hospital they
were donating money to, this fiasco has overshadowed everything else. <br />
<br />
For anyone who is familiar with my blog, I was given about 5 to 10 years to
live about two and half years ago, after being diagnosed with Pulmonary
Hypertension. I think that Downie’s diagnosis might have struck a different
chord with me, and perhaps other people in my situation.<br />
<br />
Two years ago I was given a life expectancy, and was severely disabled requiring supplementary oxygen 24 hours a day at the age of 25.
Although I am still living with a very serious life-threatening illness, I am
doing better than I was two years ago. However, I found that I became afraid of
living for fear of making my condition worse. Going to concerts and shows was
one of my most cherished past times in life, but I stopped going to them after my diagnosis
out of fear.<br />
<br />
I worry how the bass will affect my heart (something I have always had an issue
with.)<br />
I worry that I will need to wear my oxygen as the night goes on and I get
tired. <br />
I worry that I might have to wear a medical mask to protect me from germs.<br />
I worry that people will stare at me because of my medical equipment. <br />
<i>I worry that strangers will ask, “what is wrong with me?” Which is always funny
to answer, because <b>I don’t feel like anything is “wrong” with me. I just happen
to be sick.</b></i><br />
<br />
Living with a terminal or life-threatening illness has sometimes made me feel
like I am staring down a barrel of a gun. When I heard about Downie’s
diagnosis, and how he planned to go on one of his best tours yet, it really encouraged
me. Hearing the way he faced his diagnosis made me want to change the way I was facing mine. This man was also staring down a barrel of a "diagnosis gun" and he’s going
to do what he loves to do anyways. Why wasn’t I doing the same? I realized I
couldn’t keep letting life pass me by out of fear. Maybe it is time to test the
waters a bit. Maybe I cant’t know what I can or can’t do without trying. I was
lucky enough to score presale Hip tickets (please don’t hate me!) I also plan
to go to a smaller local show next week just to test out the waters. The idea
of going to a venue that houses nearly 20,000 with lots of stairs really freaks
the heck of me, but I am hoping I will have a great time with no ill
consequences to my health. <br />
<b><br />
If only for a moment, can we shift our focus from how what the ticket scalpers
are doing should be illegal, to how great The Tragically Hip and Gord Downie
are? </b><br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-x4zx-xnBc3Y/V1HO9bzp_oI/AAAAAAAABLg/spYk02Loj18j4HM-rcp194eu8HOLAzSLgCLcB/s1600/jack-chambers_401-towards-london.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="241" src="https://1.bp.blogspot.com/-x4zx-xnBc3Y/V1HO9bzp_oI/AAAAAAAABLg/spYk02Loj18j4HM-rcp194eu8HOLAzSLgCLcB/s320/jack-chambers_401-towards-london.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jack Chamber’s painting <i>401
Towards London No. 1</i></td></tr>
</tbody></table>
The Hip to me, are classic Canadiana, comparable to Jack Chamber’s painting <i>401
Towards London No. 1</i>. When I listen to their music I can picture the Canadian
landscape that surrounds me. This is mostly because of their phenomenal story
telling. Some of The Hips most loved songs tell the stories of news events that
took place in Canadian towns. <i>Fifty Mission Cap</i> tributes former Toronto Maple
Leafs player Bill Barilko, and his mysterious disappearance due to a plane
crash, and the eeriness surrounding the retrieval of his crashed plane. <i>38
Years Old</i> recounts the fictional account of some 14 inmates that escaped from a
prison in The Hip’s hometown of Kingston. Their lyrics and songs remain a vivid
backdrop for Canada and its stories, both big and small. Real and fictional.<br />
<br />
I want to thank The Tragically Hip and Gord Downie for lending their music to
become apart of the soundtrack to so many people’s lives. I remember how
excited a bar full of college students got when someone sang <i>New Orleans Is
Sinking</i> at a Karaoke bar, in Waterloo, Ontario, just a few years before my
diagnosis. I remember watching the music videos for <i>Bobcaygeon</i> and <i>Ahead by a Century</i> back when Much
Music still played music videos, on early Saturday mornings before my parents
were awake. Whenever <i>Fireworks</i> comes on the car radio my boyfriend, Spencer,
sings along and squeezes my leg extra hard at “you said you didn’t give a
fuck about hockey…” This will always be one of my favorite memories.<br />
<br />
While I think that we can all agree that what has happened with the ticket
scalpers in this situation is very disappointing and in bad taste, please don’t
let it outshine what is really important. Gord Downie shared a very personal
diagnosis with the public, something that I know is very difficult to do. I am
sure that he and his family are facing something that is very hard to imagine
unless you have experienced it. <i>By letting the ticket scalpers cause so much
anger, we are letting them place value on the wrong things.</i> There is so much
media attention surrounding this. Wouldn’t it be more beneficial to raise funds
and awareness for brain tumors? Or discuss about the accessibility of drugs and
treatment of diseases in Canada? <br />
<br />
The way Gord Downie is facing his diagnosis has shown me how I want to face
mine. It is also a good reminder for what is truly important in life, because I
know that sometimes we all forget. <b><i>Instead of focusing all of our attention on the
negative, lets celebrate what was, what is and what will be. <br /><br />
</i></b><br />
Thank you so much, and I look forward to seeing you in August.</div>
Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com1tag:blogger.com,1999:blog-6231807689994491595.post-88413164069637918832016-05-29T16:30:00.000-04:002016-05-30T10:06:13.823-04:006 Tips for Facing Retirement as a Young Adult In December of 2013 I was diagnosed with Idiopathic Pulmonary
Hypertension. Although my symptoms came on quite quickly, I was only
diagnosed once I was in severe right-sided heart failure and required
supplementary oxygen 24/7 a day. Months prior to my diagnosis I had
finally started my first adult job after years of pushing tea and
cupcakes. This was not as fun as it sounds, and finding a job with a Fine
Arts degree in a tech city is no easy feat. <br />
<br />
I went back to work about 6 months after my diagnosis, which in hindsight, was way too soon to return to work. I was eager to return back to the job I loved, interact with people, and feeling like I was contributing to society again. More than that, I wanted a distraction from what was going on in my life. I managed to work part-time a few months short of a year, but realized I was in no condition to work. Unfortunately, it became clear that the stress and physical demands of working was too much for me and I had to give up my newly found career. <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-2XhfvaN1EWI/V0tRx90cwqI/AAAAAAAABK8/K2iqLoa0Ed4BxhXm885BjG-7BU5uR7aLACLcB/s1600/286534_3681341125964_202210056_o.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://4.bp.blogspot.com/-2XhfvaN1EWI/V0tRx90cwqI/AAAAAAAABK8/K2iqLoa0Ed4BxhXm885BjG-7BU5uR7aLACLcB/s320/286534_3681341125964_202210056_o.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I really do have a bunch of 'island time' themed <br />
outfits.</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
As such, at the age of 27 I had to retire, and I have been retired now for nearly a year. I wanted to share what I have learned in the past year about being retired in my 20’s. Retiring as an early adult is uncommon. Therefore, very little support and information is available for this kind of transition. <br />
<br />
So aloha- <i>welcome to the island</i>. Grab your beverage of choice and your favourite Hawaiian print shirt. (If you don't have one yet, now is the time to invest in one!)<br />
<br />
<b> 1) Netflix and Nap </b><br />
<br />
Chances are if you have a chronic illness or a condition that is preventing you from working, you will need some down days. Don’t feel guilty for needing some time to take it easy on your body; this is part of the reason why you are no longer working. If your body is telling you that you need a down day, reach out and take it. Take naps as needed. I know my body needs extra TLC compared to most people my age because it works so much harder just to do simple tasks (like breathe.) It is okay to find a good show on Netflix and slowly marathon your way through. Just be sure that watching iZOMBiE isn’t the only thing you do for a month straight. Although majority of your family and friends will be at work or at school during the day, it is still important to use and limit your TV time wisely. <br />
<br />
<b> 2) Stay Sharp </b><br />
<br />
According to a study found <a href="http://mentalfloss.com/article/27590/who-reads-books" target="_blank">here</a> 42% of college graduates never read another book after university. After I stopped working for a bit I noticed that I no longer felt as mentally 'sharp.' In order to try and maintain my brain I read several books a month and write.<br />
<br />
Books have been a great source of entertainment for me. Fictional books can allow you escape reality (if only for a moment.) Inspiring and self-help books can help you cope, and find hope. Trashy memoirs are usually an easy read and thoroughly enjoyable. <br />
<br />
If you want to continue to learn on an educational level, you can always find books in your area of interest. <a href="http://www.open.edu/itunes/" target="_blank">iTunes also offers “The Open University”</a> which has free lectures and content on various subjects. If you are really ambitious in continuing learning, you can try and create your own lesson plans which is a great way to still set goals and deadlines for yourself. (Some of us A type personalities really miss having that kind of structure.)<br />
<br />
Books and lectures aren't the only way to stay sharp. You always find activities that incorporate working out that brain muscle in a way that feels more like play. Puzzles, word searches and logical/spacial thinking work books are all a great way to keep that hamster in your brain on the wheel.<br />
<br />
Documentaries also available on Netflix and YouTube for those days where you want to learn from the comfort of your couch and sweat pants.<br />
<b><br /> 3) Creative Outlet</b><br />
<br />
Creative outlets are important to both develop and hold onto during your transition to retirement. Hobbies and interests are often things that we naturally enjoy doing. Sometimes our illnesses might take away our ability to do certain activities that you previously enjoyed doing. As such, you may find yourself on the hunt for new interests and hobbies. <br />
<br />
It is really important to maintain a creative outlet. Being creative and having hobbies will still provide you with a sense of being able to accomplish a goal. I know that when I stopped working I felt a sense of loss. How could I accomplish anything if I didn't have deadlines and the demands of an office to meet? I learned to set my own goals, and to create my own accomplishments. Sometimes my goal might be to do one small drawing in a day, or to work on writing an article.<br />
<br />
Having a creative outlet can also have many <a href="http://www.huffingtonpost.com/james-clear/make-more-art-the-health-benefits-of-creativity_b_8868802.html" target="_blank">beneficial side effects</a>. It may help reduce stress and anxiety. <br />
<br />
Drawing and writing aren't the only ways to have a creative outlet or hobby. Hobbies can range from crafts, scrap booking, sewing and playing music to volunteering, playing cards and cooking!<br />
<br />
<b> 4) Keep Moving</b><br />
<br />
It is very important to keep as active as possible. Unfortunately, some chronic illnesses can make it difficult to stay active. Pulmonary Hypertension, for example can cause disability as it leaves people breathless. It also has the potential to cause dangerously low oxygen saturations. As such, it is recommended that you speak to your doctor to discuss the best way for you to stay active.<br />
<br />
I am disabled due to having Pulmonary Hypertension, but try to stay as active as possible. I will try to walk at least a mile each day. Walking on flat land is easier for me, so if the weather sucks or I am having a bad symptom day, I will walk around the house until I reach the mile mark. I also try to get up to walk for 5 or 10 minutes if I have been sitting for an hour. <br />
<br />
If walking without a destination sounds boring to you, you can always go to the mall or to a museum. Both provide climate controlled environments with flat land (and elevators if you are unable to do stairs.) <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-Jfeq8mpSyOw/V0tEVD_c_KI/AAAAAAAABKs/8WMVz73d3A88SB82P-rHfC3j3Lzk0WUogCLcB/s1600/IMG_6041.jpg" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://3.bp.blogspot.com/-Jfeq8mpSyOw/V0tEVD_c_KI/AAAAAAAABKs/8WMVz73d3A88SB82P-rHfC3j3Lzk0WUogCLcB/s320/IMG_6041.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At the world's worst wax museum.</td><td class="tr-caption" style="text-align: center;"></td></tr>
</tbody></table>
In addition to walking, I try to stay active by doing a 20 minute session of yoga or Pilates from the comfort of my own home. There are great and affordable apps for yoga and Pilates, and there are also free videos on YouTube as well. Depending on your abilities, you may be able to adapt these works out by doing chair yoga.<br />
<br />
<b> 5) Treat Yo Self</b><br />
<br />
Ah, the catch phrase that might ruin this generation (and my bank account.) It is very important to take care of yourself. Try to get enough sleep. Eat as healthy as possible, but also know when it is okay to cheat. Bottom line, you should be able to feel like you can enjoy your retirement. We shouldn't be punished for not being physically capable of working.<br />
<br />
Make plans for whatever adventures you are able to do. This can range from trying a new cafe, going to a new museum or trying a weekend get away. Find ways to make yourself smile. It can be as simple as putting a bird feeder outside of a window.<br />
<b><br />6) Find Yourself</b><br />
<br />
It can be very difficult to retire during what should be the prime of someone’s life. Even older people have a difficult time adapting to the transition of retirement because of how heavily careers and professions are weighed in with our perception of ourselves. In order to get to know someone, we often ask “what do you do?” <br />
<br />
While many of us are or were very passionate about our careers, I have learned that jobs are usually on the more superficial layer in terms of defining someone. For example, if someone heard what my former title was, they might assume that I studied business. I never took a business course in my life. (It was all learned through pushing cupcakes, baby!) My real passion has always been being creative. I went to university for fine art (drawing, painting and sculpture) but now I use freelance writing as a form of being creative. So my former career did not really define me, and my current retired status doesn’t really define me either. I have always been a very hard worker, and very career driven (hence why I started a blog a few months after facing a heavy diagnosis.) <br />
<br />
Facing retirement so young can certainly be challenging. I still have my days where I question my self worth because I can no longer contribute in the ways I used to, or desire. However, I am proud of myself for having such a big obstacle and still accomplishing everything that I have through freelance writing. My diagnosis, as cheesy as it sounds, has taught me a lot about myself, and even other people in my life. It has also pushed me to continue to try and find myself and be the person I want to be despite everything.Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com1tag:blogger.com,1999:blog-6231807689994491595.post-27614960316923512282016-05-20T09:00:00.000-04:002016-05-20T09:38:16.441-04:00PHighter Friday: Kathleen<a href="https://4.bp.blogspot.com/-UFbov9mpwVk/VzyyLHA2wYI/AAAAAAAABKI/Gve2hTkXSOwJW7l2Ye0p9P4LrlbQyK8lgCLcB/s1600/FullSizeRender.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://4.bp.blogspot.com/-UFbov9mpwVk/VzyyLHA2wYI/AAAAAAAABKI/Gve2hTkXSOwJW7l2Ye0p9P4LrlbQyK8lgCLcB/s320/FullSizeRender.jpg" width="172" /></a>I got diagnosed In July of 2009;<i> by accident</i>. I was under a lot of
stress at my job and had developed ulcers. I went in to be scoped at the
hospital and the anesthesiologist just happened to be a doctor.<br /><br />
During the procedure my oxygen dropped significantly. The
doctor came to the recovery room and expressed his concern about my
oxygen saturation. He recommended going to see my PCP right set. This set off a
chain of doctors etc.. I was being treated with Adcirca and Tracleer. For the next year that is all I was on and I was not getting any better.<br />
<br />
I did some research on PH doctors and found the Cleveland clinic,
where I am from. It is noticed as being one of the best PH clinics in the country. I decided to move
back to Cleveland and seek treatment there. All of my family were there
too, so they could help me out as well.<br />
<br />
I saw a specialist there and he wanted to do another ultrasound and right heart cath. I went in on a <span class="aBn" data-term="goog_1020855634" tabindex="0"><span class="aQJ">Thursday</span></span>
in July for my heart cath. During the procedure the doctor called my PH doctor
to tell him my pressures. My PH doctor told them to immediately
admit me. I was a little nervous at this, but figured they were just
going to do some additional testing. As they were wheeling me to my room
I looked up. The floor I was being admitted too was heart failure ICU.
It was at that moment I knew this was serious and my life was about to
change.<br />
<br />
I ended up getting a Hickman line and Remodulin pump. I was in ICU for a week titrating up. A nurse from the drug company came to the hospital to teach me how to
use my pump. Unfortunately, I was too sick from the side effects to even
comprehend a little of what she was saying. I was absolutely devastated that I was going to be hooked up to a pump
for the rest of my life. All I could ever think about was all the things
I could never do again.<br />
<br />
For the next six months I was miserable. The pain from the Remodulin was
intense, and no pain killer that was prescribed helped. I was terrified
to drive places in case I was in an accident. It took me forever to
change my bandage and mix my Remodulin. I figured I would be confined to
my house forever.<br />
<br />
After many tries of pain killers I was prescribed Tramadol and that took
the pain away. This was the first sign of hope that my life was not
over. After feeling sorry for myself for a few months I decided that I was
not going to give up and that I needed to get my act in gear and stop
acting like a victim. It was hard at first, but everyday I pushed myself to increase my activity level and get out and spend time with other people.<br />
<br />
I decided that I was going to enjoy every moment of my life and not look at life as what things I cannot do, but what I can do. I did not want people to look at me and see a sick person, but someone
who is a vibrant person. I used the motto " fake it, 'till you make it".<br />
<br />
Today I know I am a miracle. When I was in ICU my PH doctor told me without
the pump I would probably not live more than a few weeks. It has been
almost six years now.When I see him he is continually amazed at how well I am doing. I know I have gotten better because of my attitude. I see the glass as full.<br />
<br />
I am unable to work full time, but I went out and got a part time job. It gives me purpose and also gets me out of the house. I will never be able to run, but I can walk, so that's what I do everyday.<br />
<br />The side effects are still there, but they are not as bad as they used to be, so I am grateful. They are manageable.<br />
<br />
Life on life's terms is an important mantra for me. I know I will have some days
that I really do not feel good, but I refuse to be depressed about how
my body is failing me. I look at it as this is my new "normal" and try to stay focused on the things I can do. Having PH has definitely changed how I look at life. I used to always look ahead or behind, never staying in the moment. One day at a
time, one moment at a time. Life is as good and as amazing as I let it be.<br />
<br />
Today I am actually in the best shape that I have ever been in. I really
take care of my health, something I had always taken for granite. I surround myself will positive people, and people who do not see me as
"the sick girl". They do not coddle me or tell me I am too sick to do
something. They let me decide what I can and cannot do.PH has also taught me how to ask for help. In the beginning I needed
help around the house, cleaning etc...today I do not need any help, but
if I should need it, I can ask for it without making myself feel bad.<br />
<br />
The list of all the positive things in my life could go on forever. The
most important one for me though is my positive out look on life.
Without that I am doomed. It is what gets me out of bed in the morning. I
look forward to each day.<br />
<br />
I have PH, but I do not let it define me as a person.Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com0tag:blogger.com,1999:blog-6231807689994491595.post-62165588086350398802016-05-05T12:34:00.002-04:002016-05-05T12:34:19.768-04:00#WorldPHDay<span></span><br />
<div class="" data-block="true" data-editor="6kd8u" data-offset-key="9d9ks-0-0">
<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.phaware.global/" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;" target="_blank"><img alt="http://www.phaware.global/" border="0" height="320" src="https://1.bp.blogspot.com/-qbX5vWS_Ico/Vyt14J6BL7I/AAAAAAAABJ0/HqoU7gaY0vYwoqAbZ8Hmw8_utmUo13jDACLcB/s320/13151925_10101557591711729_5297984231238978375_n.jpg" width="320" /></a></div>
<div class="_1mf _1mj" data-offset-key="9d9ks-0-0">
<span data-offset-key="9d9ks-0-0"><span data-text="true">Today (May 5th) is </span></span><span class="_5u8n" data-offset-key="9d9ks-1-0" spellcheck="false"><span data-offset-key="9d9ks-1-0"><span data-text="true">#WorldPHDay</span></span></span><span data-offset-key="9d9ks-2-0"><span data-text="true">. What will you be doing to help raise awareness for Pulmonary Hypertension? PH is a rare disease, which means that in Canada we have less access to treatment options.</span></span></div>
</div>
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<div class="_1mf _1mj" data-offset-key="enfjv-0-0">
<span data-offset-key="enfjv-0-0"><br data-text="true" /></span></div>
</div>
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<div class="_1mf _1mj" data-offset-key="8hlh9-0-0">
<span data-offset-key="8hlh9-0-0"><span data-text="true">While donations towards a PH charity are always appreciated, I ask that in an effort to help Canadians living with PH that you take the time to share the following link for "Take Action PAH" along with using the tool on the website to e-mail your local Premier. "We need your support—now, more than ever—as we continue our fight for publicly funded access to Opsumit. We welcome support from anyone affected by PAH, including patients, caregivers, and supporters of our cause. It only takes a few minutes—click on the easy-to-use sharing tools at the bottom of this page and visit the Meet Your Provincial Representative tab to learn more about meeting with your local provincial representative." <a href="http://www.takeactionpah.ca/">http://www.takeactionpah.ca/</a></span></span></div>
</div>
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<div class="_1mf _1mj" data-offset-key="bvlrk-0-0">
<span data-offset-key="bvlrk-0-0"><br data-text="true" /></span></div>
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<span data-offset-key="e0sik-0-0"><span data-text="true">The USA currently has access to about 14 different PH medications. In Canada, we currently have access to about 8.5 medications. Opsumit, a PH medication that approved for use in Canada nearly two years was rejected from government funding. Treatment for rare diseases are more expensive because less medications are being made and sold because there is a smaller population who benefits from these medications. Opsumit is about $128.33 per day, for a 10mg dose. Many people with PH are unable to work due to horrible side effects of their medications, along with the debilitating side effects of the disease. As such, many people do not have access to this medication without government funding. So while it has been approved for use in Canada, very few patients actually have access to it. </span></span></div>
</div>
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<div class="_1mf _1mj" data-offset-key="j119-0-0">
<span data-offset-key="j119-0-0"><br data-text="true" /></span></div>
</div>
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<div class="_1mf _1mj" data-offset-key="hl1f-0-0">
<span data-offset-key="hl1f-0-0"><span data-text="true">Newer medications are less invasive with less debilitating side effects, and also hold a lot of promise in terms of treatment. Some medications that have been available in the US for nearly a decade never hit the Canadian drug market because our market is smaller, and because of the limitations set in place. There was a new medication approved for PH this year called Uptravi, but sadly, it may face the same fate as Opsumit because "Ontario legislation dictates that drug and treatment funding decisions be based on the best clinical and economic evidence available." - See more at: <a href="http://treatraredisease.ca/the-issue/#sthash.cloqIwHI.dpuf">http://treatraredisease.ca/the-issue/#sthash.cloqIwHI.dpuf</a></span></span></div>
</div>
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<div class="_1mf _1mj" data-offset-key="2cr4o-0-0">
<span data-offset-key="2cr4o-0-0"><br data-text="true" /></span></div>
</div>
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<div class="_1mf _1mj" data-offset-key="1hu1j-0-0">
<span data-offset-key="1hu1j-0-0"><span data-text="true">As many of you know, PH is a progressive, often fatal disease with no cure. Current treatments help slow down the progression of the disease, which is why it is so important that we have access to these medications as soon as they become available. </span></span></div>
</div>
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<span data-offset-key="30o9a-0-0"><br data-text="true" /></span></div>
</div>
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<div class="_1mf _1mj" data-offset-key="b5l40-0-0">
<span data-offset-key="b5l40-0-0"><span data-text="true">To read more about my interview with Dr. Mehta (the Chair of PHA Canada) where access to PH treatments in Canada are discussed, please visit the link here: <a href="http://phightorflight.blogspot.ca/search/label/Accessibility%20of%20PAH%20Therapies%20in%20Canada%20Series">http://phightorflight.blogspot.ca/search/label/Accessibility%20of%20PAH%20Therapies%20in%20Canada%20Series</a></span></span></div>
</div>
Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com0tag:blogger.com,1999:blog-6231807689994491595.post-89804295313315478052016-04-26T19:30:00.001-04:002016-04-27T11:41:20.324-04:00To The Person Who Wondered If I Am Really Sick<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-vU2UFR945SI/Vx_4OqCzJtI/AAAAAAAABJU/14j075zI6RYmri66c-ZYhOwJTvYmxGM3wCK4B/s1600/IMG_5998.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://3.bp.blogspot.com/-vU2UFR945SI/Vx_4OqCzJtI/AAAAAAAABJU/14j075zI6RYmri66c-ZYhOwJTvYmxGM3wCK4B/s320/IMG_5998.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A photo where my invisible illness is visible.<br />
I sleep with oxygen every night.</td></tr>
</tbody></table>
As someone with the often invisible illness Idiopathic Arterial Hypertension (also known as PH,) I have had small incidents of strangers who have questioned the severity of my illness. I have had strangers question why I use an accessible parking spot. It really sucks trying to justify your illness (especially when it is life-threatening) to a stranger. It isn’t an easy thing to open up about, and often time these strangers aren’t asking you about whether you are disabled or not because they genuinely care about you. They are looking for validation. They want to be "right" about calling you out over a silly parking spot. Unfortunately, when you have an invisible illness this is bound to happen with strangers. <br />
<br />
Recently I found out that someone<i> I know</i> asked if I was really sick. It felt like a punch to the gut. Life with an invisible and life threatening illness is so incredibility complicated and painful. I don’t understand how someone could question the validity of my illness. I figure if one person has questioned my illness, other people may have also wondered how serious it is, and how it impacts my life. Their comments made me feel extremely deserted. <br />
<br />
I may look like a vibrant young woman who is just on the cusp of starting her adult life, but looks can be deceiving. Although I may not look ill, I have received a diagnosis. I have seen many specialists; I have gotten second opinions. My diagnosis shouldn’t be up for debate, but apparently it is. Pulmonary Hypertension is an invisible illness to the naked eye, but there are many indicators that I am sick to someone who understands the disease. <br />
<br />
Majority of society doesn't know what signs and symptoms to look for to indicate that I have Pulmonary Hypertension. Mainstream media often depicts someone as being sick as looking pale, frail and bald. However, this isn't always the case for determining how serious an illness is. Many invisible illnesses can be well concealed, especially with the help of make up. Not only is my illness well hidden, but so is my disability. A symbol of someone in a wheelchair is often used for accessible parking spots and bathrooms, even though there are an array of different disabilities (including invisible ones.) Because of this, society weighs so heavily on being able to visibly see a disability in order to believe its validity. Regardless, there are still many different disabilities that do not require a wheelchair, or any visible medical equipment.<br />
<br />
I can easily cover up how sick I am- to the point that many doctors ignored the fact that I was heart failure before being diagnosed. Pulmonary Hypertension isn't diagnosed through blood work. It is diagnosed through a process of elimination. <b>For the person who doubts my illness, I can ensure you that I went through a plethora of invasive tests to receive a diagnosis. </b><br />
<br />
At one point I had so much radiation exposure the technicians running the various x-ray, MRI and CT scans turned me down for another test, fearing it would be too dangerous. However, a specialist demanded that I had another CT scan, even though I had several in the past 24 hours, and even more in the last week and month leading up to my diagnosis. Dozens of vials of blood work was also ordered to rule out other underlining diseases, such as HIV. <br />
<br />
The most invasive and effective procedure for diagnosing PH is called a Right Heart Catheter (which I had on Christmas Eve in 2013.) For this test, a tool is placed in a vein in either your groin or neck that leads to your heart. Mine was placed in my groin and the tool eventually made its way up to being directly in my heart to measure the pressure my pulmonary pressures. I was completely awake for this procedure, and was only given a small numbing in my leg. This test confirmed that I did indeed have a high pulmonary pressures, and I was officially diagnosed with Pulmonary Hypertension.<br />
<br />
If you try to walk along side me, you may notice that I need to slow down, or may have to try and catch my breath while speaking. You might notice me gasping for air if we had to walk up a hill or some steps. People with PH are often out of breath by the time they reach the third step in a flight of stairs. I may look perfectly healthy, but I have a lung- heart disease. Those are two very vital organs that needed to do the most basic of tasks that are often taken for granted, such as going up the stairs, or bending down to tie your shoes.<br />
<br />
Being short of breath was actually one of my first noticeable symptoms. I had my first symptom in Fall 2013. From there my symptoms progressed at an alarming rate. I was diagnosed quite quickly, as most people wait 2 years for a diagnosis. However, by the time I was diagnosed I was told that I was somewhere between a stage 3 and a stage 4. Even though I was on the verge of dying, I still didn’t look sick to trained professionals (which delayed receiving a diagnosis before the progression of the disease kicked in.) If I didn’t received medical intervention when I did, I am not sure how much longer I would have lasted. In the weeks and days leading up to my hospitalization, I would wake up gasping for air. I had started to stop breathing in my sleep. <br />
<br />
Pulmonary Hypertension doesn’t just make you short of breath; it narrows the arteries in your lungs. This makes it more difficult for oxygenated blood to be pumped throughout your body, causing an overloading in the heart as it desperately tries to pump blood. All this extra work causes heart failure. A symptom of PH is having an elevated heart rate- many people with PH experience a heart rate similar to someone who has run a marathon while doing a simple task; such as walking, or cleaning the house. Many people with PH (like myself) also suffer from lower than normal oxygen saturations and dyspnea. Having low oxygen satuations also causes someone to tire very quickly because of how hard their body must work to accommodate. <b>Perhaps these aren’t visible symptoms, but that shouldn’t make the seriousness of an illness illegitimate.</b> These symptoms are serious, and can escalate the progression of the disease, and can lead to organ damage and failure. <br />
<a href="http://2.bp.blogspot.com/-FexmmQGuPHw/Vx_4vnQq7VI/AAAAAAAABJc/BJi3M72l3fgT-xnl6EghpwOrRB1ZNwk6ACK4B/s1600/IMG_5933.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-FexmmQGuPHw/Vx_4vnQq7VI/AAAAAAAABJc/BJi3M72l3fgT-xnl6EghpwOrRB1ZNwk6ACK4B/s320/IMG_5933.jpg" width="240" /></a><br />
<b><br />There is a huge difference between whether someone looks sick, and whether someone is sick.</b> Just because someone looks healthy, that shouldn't dismiss their diagnosis nor their symptoms. I can only assume that the uninformed comment about whether I was sick or not was influenced by how I appear on social media. My Instagram account is largely photos of cafes I visit, my dog, my boyfriend and little adventures I go on. <b>Although having a life threatening illness dictates how I live my life, it does not define me as a person. </b>I don't want to document my illness too heavily on social media. As such, I don't include many pictures of me at the hospital (although I do include them from time to time to help raise awareness for PH.) I also don't include many pictures of me wearing oxygen, or taking medications. I don't want people to pity me, or assume I am trying to get attention through my illness. Social media is also a great way to edit your life; you can only show what you chose to share. I may have a picture of me on a hill smiling, but that doesn't mean I wasn't gasping for breath, and had to take breaks to get there. For me, I only capture what I want to remember, and what I want my friends and family to remember. <br />
<br />
After my diagnosis I was so terrified to enjoy moments in life. I was scared that if I laughed or smiled, that would mean that I was okay with what was happening. Now it seems like I have to be afraid to laugh or smile because of how other people will perceive that. I have my bad symptoms days where I am extremely short of breath, and become even more physically limited. I spend hours each month waiting in waiting rooms of hospitals and blood labs. I also spend hours each month commuting to specialists appointments. I often feel ill as a side effect of the medications I am on. These medications are not elective, I also do not great a break from taking them. I must take them everyday like clock work. There are currently no treatment options that will cure the disease I have. The medication I have will only slow down the progression of the disease, but unfortunately, it is still considered fatal. It is difficult being in my 20's and knowing that I have a fatal illness. I am at an age where I am watching more and more of my friends get married, travel, start careers and have children. I was diagnosed several months after starting a career job, and I loved working. I was saving up to move out of my parent's house. I worked with children throughout university and received a specialization in education. To think that I am faking this disease is ludicrous. <br />
<br />
To the anyone who isn't sure if I am ill; please consider that not all illnesses are visible from afar. Sometimes illnesses are very easy to mask with make-up, or to filter out through social media. Just because an illness or disability is not visible does not mean that
it cannot be serious or life threatening. <b>Its visibility should not
equate to its validity.</b>Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com5tag:blogger.com,1999:blog-6231807689994491595.post-66504171824416807382016-04-08T09:24:00.002-04:002016-04-08T15:17:05.830-04:00PHighter Friday: Jenny Janzer<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-hejJFV1FicQ/VweuqVNoKkI/AAAAAAAABIU/seH_7dNS3o8sUviaAVfbjmN-NNWg3VdoQ/s1600/12966479_10206259401784846_194467073_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-hejJFV1FicQ/VweuqVNoKkI/AAAAAAAABIU/seH_7dNS3o8sUviaAVfbjmN-NNWg3VdoQ/s320/12966479_10206259401784846_194467073_n.jpg" width="320" /></a></div>
My childhood was a dream, a dream
that I woke up from on April 6<sup>th</sup> 2001 as I held my parents hands,
shaking in a doctors office with ringing in my ears- you know, the stuff of
movies, just… not the kind you want to experience. I was only 11 years old when
I was told I had Primary Pulmonary Hypertension (That’s what they called
Idiopathic back then). I was stage 4 and pretty sick… the doctors told my
parents there was a chance I could be dead within 6 months. This week I just
surpassed my 15<sup>th</sup> year of dominating PH. I never thought I’d make it
this far, but I’ve got a fighting pulse within me that refuses to quit.<span style="mso-spacerun: yes;"> </span>My name is Jennifer Janzer. The name
Jennifer means, “white wave,” or “white shadow,” or sometimes, “the fair one.”
There’s a reason I tell you this because for those first 11 magical dream
years, I grew up on a lake and from the minute I could, I’d spend every day in
the water. I embodied my name- white wave. My mom called my sister and I her
little fish. We would snorkel, just lay in the water, rock hunt, swim out over
the weeds to sandy spots or catch frogs and turtles while swimming amongst
them. I played in the lake, I bathed in the mud, I was an earth-kid, claiming Mother
Nature as one of my nurturing parents. April 6<sup>th</sup> 2001 I was told I
would not be able to swim ever again. It was probably the biggest blow they
could have given me at that time. I also had to start on an IV pump right away,
which would pump a drug called Flolan into my chest. I had no idea what this
meant and went to sleep for the surgery thinking when I woke up, I’d be fixed,
not attached to a machine that my life depended upon. <br />
<br />
<a href="https://2.bp.blogspot.com/-W49LWrB_K5o/VweurEjmh9I/AAAAAAAABIk/cB3qvgaPoG8ezreMLNALZQ2QpNwbelF6Q/s1600/12980650_10206259401864848_1356701255_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-W49LWrB_K5o/VweurEjmh9I/AAAAAAAABIk/cB3qvgaPoG8ezreMLNALZQ2QpNwbelF6Q/s320/12980650_10206259401864848_1356701255_n.jpg" width="320" /></a><span style="mso-tab-count: 1;"> </span>This change skyrocketed me into maturity.
I no longer understood what my peers did, boys didn’t matter, the right shoes
or clothes didn’t matter, making sure I had medicine with me 24/7 mattered,
making sure I changed the ice packs on my Flolan every 4 hours mattered and
keeping me isolated is what mattered. My doctors upon diagnosis, whether they
meant to or not, instilled a fear within my parents and I that crippled us
while I gritted my teeth through middle school. I’ve blocked out a lot. By high
school I realized how ridiculous some of these rules were and fought against
them like a little rebel. I wanted to be normal. I was in severe denial. I
sobbed while watching my friends swim every summer, sometimes sitting on the
pier, watching, listlessly chatting. I lost friends at school; people would
point and whisper, “there goes the diseased girl.” People feared me- <i style="mso-bidi-font-style: normal;">people didn’t understand me. </i><a href="https://www.blogger.com/null" name="_GoBack"></a><br />
<a href="https://4.bp.blogspot.com/-4F7Wtzxir7U/VweupwQ732I/AAAAAAAABIo/w8IUUg5POiA_wjFrJv8n67pC0h9nk3QTA/s1600/12959339_10206259444505914_253123088_o.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://4.bp.blogspot.com/-4F7Wtzxir7U/VweupwQ732I/AAAAAAAABIo/w8IUUg5POiA_wjFrJv8n67pC0h9nk3QTA/s320/12959339_10206259444505914_253123088_o.jpg" width="240" /></a><span style="mso-tab-count: 1;"> </span>I was pulled from gym, but actually quite
ecstatic about that as I had never been good at it. I was always last for the
mile run, passing out and vomiting while we ran laps. Flolan was my lifesaver,
but it left me miserable with side effects. I began to call myself the “blood
leopard” because of the bright hot painful red rash the Flolan left all over my
body, including my face. It’s this hideous splotchy white and red rash. I still
have it today. I spent so many mornings as a teen crying and frustratingly trying
to cover it up with layers of caked on make up and tears. I’d skip some days of
school just because I hated how much I looked and felt sicker than anything.
The pain drove deep into my bones and I became severely underweight. The side
effects of this medicine make me miserable. I went through a depression and my
anxiety grew to the point I became agoraphobic and couldn’t leave the house
without having debilitating panic attacks. <br />
<br />
At 18, I finally sought out counseling. I overcame that anxiety and so
much more. I finally then, reached out to other PH patients, for the first time,
breaking my shell of denial. My life began to brighten. I saw so many
other PH patients going to school or working jobs. I had finished high school
and decided to try college. I’d see doctors and when they’d find out I had PH
they would say, “wow well good for you for going to college,” as if they knew I
could never finish, but still felt like telling me, “hey, nice try.” It may
have taken me seven years but I graduated with a Bachelor in English/ Creative
Writing with a concentration in poetry. Writing has been my cure in many
ways.<span style="mso-spacerun: yes;"> </span><br />
<br />
<a href="https://1.bp.blogspot.com/-dCZGclJxw-k/Vweup351CeI/AAAAAAAABIQ/9mB29ZScSWQlUgpmfqaCF6jAMr4FpMABg/s1600/12939543_10206259401824847_1646321821_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-dCZGclJxw-k/Vweup351CeI/AAAAAAAABIQ/9mB29ZScSWQlUgpmfqaCF6jAMr4FpMABg/s320/12939543_10206259401824847_1646321821_n.jpg" width="320" /></a>If
I wasn’t sick I’d love to be a geologist however, out in the field, digging up
rocks, feeling the earth change beneath me, measuring its growth in sandstone
dunes and river-carved valleys. PH took a lot but it also gave me a lot. I
learned responsibility, I learned to laugh at myself, and I learned to love
every miniscule moment. I know it sounds silly but I never find myself bored
anymore… the world is bursting with possibility and even on the days I am
restricted to my bed I’ve learned to value it and find ways to occupy myself if
even just in my mind. I’ve always had a wild imagination. Any time I’m feeling
good or even “okay”, it’s a good day. I no longer carry the denial or angst or
hatred I did as a young teen. I grew to accept my rash- and found the best make
up to conceal it on my face- (Kat Von D’s Tattoo cover-up make up has been my life
saver, I so wish I had it through high school.) As of right now I’m on or have
tried pretty much every medication for this disease. My story is so long that
if I keep going much longer I’ll type you a novel. I dabbled in SubQ Remodulin
for 2 years, but got sicker. However, in those two years I got so much freedom
from the mixing and 24 hour watch of my pump that it was worth it. Flolan saved
my life again as I went back on it at age 20. I also am on Opsumit, Warfarin,
Digoxin, Lasix, Oxygen and my other least favorite- Adcirca; again for the
bummer side effects it gives. <br />
<br />
<a href="https://1.bp.blogspot.com/-an_QvBFAw1I/Vwew68GefGI/AAAAAAAABI0/RjNXZGAD5hAnX9hFJLTfR_WvZYFR5G5mw/s1600/12987938_10206259524587916_1017547335_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-an_QvBFAw1I/Vwew68GefGI/AAAAAAAABI0/RjNXZGAD5hAnX9hFJLTfR_WvZYFR5G5mw/s320/12987938_10206259524587916_1017547335_n.jpg" width="256" /></a><span style="mso-tab-count: 1;"> </span>I also suffer from Ulcerative Colitis,
Psoriasis, Asthma, and had Graves’s disease until I got that raging hormonal
thyroid scraped out. <span style="mso-spacerun: yes;"> </span>Life hasn’t
been easy but it’s taught me to appreciate everything. It also taught me the
value of people, true people that care. It’s rare to find a gem amongst all
these grains of sand and the select support system I have I couldn’t be more
grateful for. They make life worth living. I’ve found other things I love-
music, for example. I don’t even care about what I look like anymore or who
thinks what of me, I’ll drag my o2 tank right into a punk mosh pit, I’ll haul
it around while I dance until I can’t breathe at folk punk shows and rock n
roll festivals. I may look ridiculous, sometimes I get weird looks or rude comments
but I feel strong. The more I smile, the better I feel. I also found a love in
unsuspected places- abandoned buildings. Maybe I feel a connection with them
but there is something exhilarating yet calming and just “right” about visiting
them and photographing them. I can take the grimiest looking building and turn
it into art with the right lighting and angles, or take a decayed peeling
rusted post and showcase it’s abstract beauty, forcing people to look at things
they would probably never think twice about. Forever, though, writing will be
my special outlet to the constant pain PH produces and the constant fear,
guilt, and anger it brings into my life. <br />
<br />
<a href="https://2.bp.blogspot.com/-sXHULnMU8-I/Vwew6-O-LVI/AAAAAAAABIw/joW1q_z42pkCUNddZWk5uAJecx4iTnG5g/s1600/12966449_10206259524627917_1816825794_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://2.bp.blogspot.com/-sXHULnMU8-I/Vwew6-O-LVI/AAAAAAAABIw/joW1q_z42pkCUNddZWk5uAJecx4iTnG5g/s320/12966449_10206259524627917_1816825794_n.jpg" width="320" /></a><br />
<span style="mso-tab-count: 1;"> </span>Speaking of fear, since I was 11 and
learned exactly what a lung transplant was, and had to listen to exactly what
the surgery entailed, it has been my biggest life fear… and now it is my
reality. My family was not ready for this; they have been my biggest support
system. If it weren’t for them I wouldn’t be where I am right now. My mom gardens and when I was younger we
had to come up for a new name for transplanting flowers because I couldn’t even
hear the word “transplant” without having a panic attack. I’ve come a long way
since that, but I’m still terrified, and I now need new lungs or I will most
likely be dead in 1 to 2 years- or so my doctor said. Yeah, I’ve heard that
before, DUDE, but I’m a WARRIOR and I don’t plan on letting this disease defeat
me anytime soon. Life has given me a lot of lemons. And I don’t sugar coat it,
no, I’m not about to make some lemonade. I eat that lemon, rind and all and
spit the seeds out to the sky, grinning. <br />
<br />
<span style="mso-tab-count: 1;"> </span>So, as much as this next step scares me,
as much as I shake at night, and quietly sob through every morning, I will get
through this, because like everything else I have to and I do. Looking back at
what my name means, I now more so embrace the idea of the white shadow and the
fair one… fair however, as in I keep a balance in my life. And white shadow as
in, I will bring light to even the darkest corners I find myself in. SO! Bring
it on, body! You may be trying to kill me, but I am not letting that happen
anytime soon!
<br />
<div class="MsoNormal">
<b><u><span style="font-size: small;"><br />You can find me/my art and writing on these social media sites:</span></u></b></div>
<div class="MsoNormal">
<br />
<span style="font-size: large;"><i><b>gofundme for my double lung transplant</b></i>: <a href="http://www.gofundme.com/2bp6gthb">www.gofundme.com/2bp6gthb</a></span><br />
Instagram: @<a href="https://www.instagram.com/mostpulp/" target="_blank">mostpulp</a><br />
Tumblr: <a href="http://mostpulp.tumblr.com/">mostpulp.tumblr.com</a><br />
Etsy: <a href="http://mostpulp.etsy.com/">mostpulp.etsy.com</a><br />
<br />
<br style="mso-special-character: line-break;" /></div>
Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com6tag:blogger.com,1999:blog-6231807689994491595.post-5386781256445098152016-04-05T13:53:00.000-04:002016-04-05T13:57:07.062-04:00Subscription Box Review: Be Brave BoxThis is my first subscription box review. I hope to do more in the future, and can hopefully have a give away at some point. I decided that I wanted to start reviewing subscription boxes because they seem like a great idea for people with chronic illness. When I was diagnosed with PH I was sent so many lovely flowers. Unfortunately, I had to throw out of the beautiful flowers that my friends and family sent me. As someone with a lung condition, it didn't seem like a good idea to have flowers. I felt so terrible because I knew that people who cared about sent me those flowers to let me know that they were thinking of me. Even worse, I know that they spent a lot of money on me. (I used to work at a flower shop and know how expensive arrangements can be.) I think that subscription boxes can be a great alternative to gift to someone with a chronic illness, or to treat yourself to. My best friend Melissa got me a 3 month subscription box for my birthday and I absolutely love getting a surprise each month! (Thanks Mel!)<br />
<br />
<h2>
Be Brave Box Review</h2>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-HyRR7LPIxag/VwP7cKIapRI/AAAAAAAABH4/9ksnCvgZ84sKa4mU5wp-pk14tq6tHOIDw/s1600/pic.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://2.bp.blogspot.com/-HyRR7LPIxag/VwP7cKIapRI/AAAAAAAABH4/9ksnCvgZ84sKa4mU5wp-pk14tq6tHOIDw/s320/pic.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Taylor, the founder of Be Brave Box</td></tr>
</tbody></table>
The <a href="http://www.bebravebox.ca/" target="_blank">Be Brave Box</a> is a bi-monthly Canadian subscription box. It is a subscription box that is aimed towards people with chronic illnesses in the hopes of brightening their day. The box is said to be filled with about 5 surprise items that surround the overall theme of Be Brave Box. <br />
<br />
Unlike other subscription boxes, the Be Brave Box was started by a 16 year old named Taylor and her father. Taylor has a rare and genetic form of Chronic Kidney disease, and was diagnosed in November 2011. She received a kidney transplant in August 11th, 2015 from her father. After her transplant she was house bound for 6 weeks because her immune system was suppressed. During this time she brain stormed the idea of the Be Brave Box. Needless to say, this box is created for people with chronic illness by someone who understands what it is like to have a chronic illness. Taylor knows what it is like to be in a hospital for days or weeks, and the hassle of going to constant appointments, and the waiting that is involved for every appointment and medical procedure. <br />
<br />
Taylor has stated on the Be Brave Box website that "There are always going to be good days and bad. I want Be Brave Box to be another good part of life because we just need more good in our lives."<br />
<u><b><br />Products received in box:</b></u><br />
- Postcards: Three post cards made by a Canadian artist. Unfortunately, the artist is not named so I cannot credit them. <br />
- Bracelet: Be Brave Bracelet made by <a href="https://www.etsy.com/shop/magicmixes" target="_blank">Magic Mixes</a>. The bracelet incorporates ancient Chinese symptoms that are believed to bring good luck, healthy, and protection to the wearer. The bracelet also contains Blue Howlite beads which are believed to be calming, and to help provide strengthening energies. <br />
- Tea and Honey: Three sticks of honey, and three bags of <a href="https://www.stashtea.com/" target="_blank">Stash</a> tea in pomegranate raspberry green tea, chamomile, and licorice spice.<br />
- Bottle Cap Key Chain: made by a young lady whose daughter has Blouts disease. She creates <a href="http://www.anneliesevsblountsdisease.com/" target="_blank">bottle cap key chains</a> to raise awareness for Blouts disease and other rare diseases. <br />
- Lip Balm: Natural gingerbread scented lip balm made by <a href="https://www.etsy.com/ca/shop/HappyBeeLipBalm" target="_blank">HappyBeeLipBalm</a> on Etsy. <br />
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Packaging: received in an oversized envelop sent through Canada Post. Items wrapped in red tissue paper with confetti sparkles. Personalized Be Brave Box sticker held items in tissue paper. Came with a product overview of what was in box, along with a welcome postcard from Taylor.<br />
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<u><b>Cost: </b></u><br />
- Canadian: $21 CDN for a one month subscription, shipping included. <br />
- International: $29 CDN for a one month subscription, shipping included. <br />
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<u><b>Over all thoughts: </b></u><br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-kKvjxQIkXp0/VwP7G0D3jUI/AAAAAAAABH0/xHL3LnfKEV8-JOyyU1RPXmL3ox4M9hJpQ/s1600/IMG_0372.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://1.bp.blogspot.com/-kKvjxQIkXp0/VwP7G0D3jUI/AAAAAAAABH0/xHL3LnfKEV8-JOyyU1RPXmL3ox4M9hJpQ/s320/IMG_0372.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The items in the Be Brave Box that I recieved</td></tr>
</tbody></table>
I think that the Be Brave Box is an awesome idea, and something that is needed within the chronic illness community. I admire Taylor for being so young and so ambitious along with all of the other obstacles that she faces. (I'd also like to mention that her website looks very professional!) The packaging looked very pleasing, along with the card that detailed the items in the box. I like that this box is made by someone who understands what having a chronic illness can entail. <br />
<br />
My favorite products are the bracelet (because of its positive message,) the honey sticks and the lip balm (it smells amazing and goes on light but offers a creamy moisturizer to the lips.) I really enjoyed that a lot of the products were made by independent people. As someone with a rare disease, I also appreciated that I got to learn about another rare disease through the key chain. I could see a lot of my other friends with chronic illnesses enjoying these items as much as I do.<br />
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I send a lot of postcards and letters to some special friends that I have made online who also have PH. The postcards contain some encouraging words, so they will be great to send out to any of my friends who are having a challenging time. The post-cards have no formatting on the blank side, and the Canadian artist is unnamed. As someone who went to art school, I really wish that I could credit the artist. I like that this box will encourage other people with chronic illnesses to send old fashioned letters. I have made a few pen pals through this experience with PH and I absolutely love moving away from technology, and sending some good old snail mail. <br />
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I believe I received one of the first Be Brave Boxes as it only launched in the new year, and is offered on a bi-monthly basis. Overall, I really enjoy the message and the theme behind this subscription box. The fact that it was created by a 16 year old is even more impressive. I thought that the items in the box fit the overall theme and message that Taylor was trying to convey, and I could see this box bringing a smile to someone's face. <br />
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Many people with chronic illnesses gear themselves towards more natural products after diagnosis. I thought that the fact that the box contained honey, and a natural lip balm along with a bracelet that contained a back message about a Chinese symbol for strength was very well thought of, and something that other people with chronic illness could enjoy and feel safer using. I would have liked to see organic loose leaf tea instead of Stash tea, although this might reflect more poorly on me than the actual box. I am a bit of a tea snob, but once you have loose leaf tea there is no turning back!<br />
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I know I got excited when I received it in the mail (it shipped fairly quickly as well.) I think that the Be Brave Box has a lot of potential, and I can see it growing in the near future. Thank you for letting me review the Be Brave Box, Taylor! It was an honour to speak to such an inspiring, young business woman!<br />
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To learn more about Taylor and the Be Brave Box please visit and follow the sites below:<br />
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<a href="http://www.bebravebox.ca/">http://www.bebravebox.ca/</a><br />
<a href="https://www.facebook.com/bebravebox">https://www.facebook.com/bebravebox</a><br />
<a href="https://www.instagram.com/bebravebox/">https://www.instagram.com/bebravebox/</a><br />
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<b><i>*If you would like me to review your product or subscription box please contact me at phightagainstph@gmai.com </i></b>Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com4tag:blogger.com,1999:blog-6231807689994491595.post-35397133381059011972016-04-01T09:00:00.000-04:002016-04-01T09:00:16.897-04:00PHighter Friday Follow Up: Janeris <div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-s8EWcPf7j3k/VvRfPs6hykI/AAAAAAAABHQ/ANjdcllfI60AI9k5MF7O-TelAGNuU3GRg/s1600/IMG_2494.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-s8EWcPf7j3k/VvRfPs6hykI/AAAAAAAABHQ/ANjdcllfI60AI9k5MF7O-TelAGNuU3GRg/s320/IMG_2494.jpg" width="213" /></a></div>
<i>*Janeris' original post can be found <a href="http://phightorflight.blogspot.ca/2015/03/phighter-friday-janeris.html" target="_blank">here</a>.</i><br />
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I have been doing great. It's been almost a year since I changed from an
IV therapy to pills only. I have remained healthy despite being on a
really dose of the new medication. My recent echos and pulmonary tests
show so low that they can't be detected. That means my pulmonary
pressures are so low there is no concern of the PH being active. I am
active. I love going to the gym. The new drug requires me to eat every 8
hours. That on top of my regular meals has caused me to gain about 10
lbs in this past year. I am finding myself struggling to stay focused on
eating healthy. I know that eating right has kept me healthy. So I have
to always focus on maintaining a healthy diet. Other than that, my life
has been amazing. I'm in the middle of 2 adoptions and am very happy.
Stress is minimal. I see myself improving every day. My greatest
pleasure is being able to motivate people around me to find their
healthy place. It has been 7 years since my diagnosis. I'm hoping to one
day not need medication. <br />
<br />
<a href="http://www.mycleancuttingboard.com/" target="_blank">www.mycleancuttingboard.com</a><br />
<a href="http://facebook.com/mycleancuttingboard" target="_blank">facebook.com/<wbr></wbr>mycleancuttingboard</a><br />
instagram @mycleancuttingboardAnonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com0tag:blogger.com,1999:blog-6231807689994491595.post-28717960138347403232016-03-30T12:45:00.001-04:002016-06-30T11:52:35.187-04:00Cross-posted: When a Doctor Said 'Hope Won't Help' My Chronic Illness'<div data-contents="true">
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<span data-offset-key="618o8-0-0"><span data-text="true">An article I wrote is up on <a href="http://themighty.com/2016/03/pulmonary-hypertension-how-having-hope-helped-me-get-better/" target="_blank">The Mighty</a> today. Below is a clip of the article. Please feel free to read more at the source.</span></span></div>
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<i><span style="font-size: small;"><span data-offset-key="19peq-0-0"><span data-text="true">"The day that I was diagnosed with pulmonary hypertension, a doctor waltzed into the room and announced that I had five, maybe 10 years left to live. He had spoken to my parents first about the news. I looked over at my parents to gauge their reaction. Was this really happening? My mama said very strongly, “It will be OK, because we have hope, and we will get through this.” The doctor seemed almost angry by what my mama said. He nearly cut her off to say, “This isn’t cancer. Hope won’t help you.” That was pretty much the end of the conversation. Well… actually, it wasn’t.</span></span></span></i></div>
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<i><span style="font-size: small;"><span data-offset-key="66nvg-0-0"><span data-text="true">I was going to leave this part out, but it didn’t feel authentic. After what the doctor said I threatened to end my life. If hope couldn’t help me… if there was no hope for me, how could I possibly face each day? I was instructed to go have more blood work and go home after my parents convinced the doctor I would be safer at home with them than at their ward. It was a few days before Christmas. None of this felt like the movies."</span></span></span></i></div>
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<b><span data-offset-key="4e4he-0-0"><span data-text="true">Please follow the link below to read more: </span></span></b></div>
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<a href="http://themighty.com/2016/03/pulmonary-hypertension-how-having-hope-helped-me-get-better/"><span data-offset-key="b5g7d-0-0"><span data-text="true">http://themighty.com/2016/03/pulmonary-hypertension-how-having-hope-helped-me-get-better/</span></span></a></div>
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Anonymoushttp://www.blogger.com/profile/01807807585432203749noreply@blogger.com0