Sunday, 29 May 2016

6 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. 

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.

I really do have a bunch of 'island time' themed

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.

So aloha- welcome to the island. 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!)

1) Netflix and Nap

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.

2) Stay Sharp

According to a study found here 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.

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.

If you want to continue to learn on an educational level, you can always find books in your area of interest. iTunes also offers “The Open University” 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.)

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.

Documentaries also available on Netflix and YouTube for those days where you want to learn from the comfort of your couch and sweat pants.

3) Creative Outlet

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.

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.

Having a creative outlet can also have many beneficial side effects. It may help reduce stress and anxiety.

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!

4) Keep Moving

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.

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.

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.)

At the world's worst wax museum.
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.

5) Treat Yo Self

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.

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.

6) Find Yourself

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?”

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.)

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.

Friday, 20 May 2016

PHighter Friday: Kathleen

I got diagnosed In July of 2009; by accident. 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.

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.

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.

I saw a specialist there and he wanted to do another ultrasound and right heart cath. I went in on a Thursday 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.

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.

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.

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.

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".

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.

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.

The side effects are still there, but they are not as bad as they used to be, so I am grateful. They are manageable.

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.

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 I do not need any help, but if I should need it, I can ask for it without making myself feel bad.

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.

I have PH, but I do not let it define me as a person.

Thursday, 5 May 2016

Today (May 5th) is #WorldPHDay. 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.

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."

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.

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:

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.

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: