My life is a little bit different from someone who was just
diagnosed with PH. It's different in the way that I was born already
having PH because I have congenital birth defects such as: ASD &
VSD, Scoliosis, & Restrictive Lung Disease to name a few. So, I was
pretty much told from day one that I'll never be able to do this or I
should do that. Basically my time clock started on day one and after
spending my first month of living at a hospital, my mother was told to
come get me and take me home because there wasn't anything left the
doctors could do for me. That was in 1969. I will be turning 45 in
September. Yippee!!!!
You're probably wondering how I do it. How do I beat
the odds? Never, ever give up. No matter how much life sucks or how
dismal the outlook seems, you keep marching forward. I am a very
realistic person who doesn't want explanations from doctors
sugar-coated. I want facts. Facts are something you can work with... Not
the "what if" scenarios that can keep you in fear of a future event
that may or may not even happen.
In 2006, I started going to a Pulmonologist who
specializes in Pulmonary Hypertension. I went through the whole process
of getting correctly diagnosed with PH for insurance purposes because my
breathing was getting worse. At this time, I was already using oxygen
24/7 and taking cardiac medication for Ventricular arrhythmias.
Although, I was still going out dancing at a dance club... Just no
longer drinking any alcoholic beverages which I only did socially anyway
years ago. Besides, I don't need alcohol to have fun! *wink*
Since 2006, I've had a slow decline in health (so,
no more dancing...boo!). I'm getting shortness of breath a lot more and
I've had to increase my oxygen flow now. Instead of using 5 liters per
minute 24/7, it's now at 6 LPM. Each step of a decline in health hits me
hard emotionally. There's really no way to prevent the emotion side of
things but if you can accept the fact that the human body wasn't created
to live forever in pristine condition, then it becomes easier to move
past the emotional part. Once you are past the emotional part of
accepting how you are physically today, you can actually learn new ways
of getting things done in your daily life. There are going to be things
you'll find that you can no longer do on your own or at all. It will
make you mad. It makes ME mad that I have trouble doing things that I
once was able to do easier than before. It will help if you have family
and friends who are willing to understand your condition and are able to
pitch in to help without making you feel as if you're an invalid which
is so important! There is a fine line that helpers need to figure out
with the person who has PH where the helper helps up to a certain point.
I really believe if a helper does everything for the person with PH,
the patient could end up giving up on life's little joys. Then,
depression sets in...which is a huge problem when living with PH. If you
notice that you are getting depressed, talk to your doctor. Get help..
Don't ignore it.
My advice for people living with PH or just
diagnosed with PH is give yourself a break. You did not cause this to
happen to yourself. It's not your fault. It is very ok to allow yourself
a "ME" day every now and then to give your body and mind a whole day to
just rest. Find something that you absolutely love to do and have fun
with it. For me, that would be reading, container gardening, or
crocheting. Or just flip through a good cookbook to find a new recipe to
experiment with. You need things that make you smile on days where you
feel bad because, yes, you will have those days. Just don't let yourself
get lazy. Try to stay as active as you can but remember there will be
days where you feel like you just can't do it. Give yourself a break.
It's ok.
However you chose to battle PH, do not let it do
more harm than good. Take your medicine as prescribed. If the medicine
isn't making you feel better or is giving you a bad side effect, contact
your doctor to see if you can try a different medicine. Don't just stop
taking it and not tell your doctor. That's dangerous. Also, if you are
suppose to use supplemental oxygen, then use it like you're suppose to.
By not, using your oxygen properly, you are only harming your heart by
making it work much harder than it needs to to pump more blood out to
your body. You will end up starving your heart, brain and other muscles
from that much needed oxygen that you refuse to use. So, give your heart
and lungs a break and add possibly years to your life by using your
oxygen and taking care of your body. Stay away from sick people. I do
whatever I have to do to avoid getting sick. I get the flu shot every
year. I haven't had the flu in over 10 years. I also wash my hands a lot
with just soap and water. You can use antibacterial soap but regular
soap works just as well.. In my opinion! During flu season, my best
friend are Lysol wipes....especially if my husband is sick. I tackle
doorknob, tv remotes and light switches multiple times daily. Like I
said, I do whatever I can to stay healthy.
As for getting use to wearing your oxygen in public,
it can be a little scary at first. I write a blog all about Living On
O2 for Life. People are going to stare because they are curious. Little
kids will ask about my oxygen a lot to their parents first and then to
me. I ALWAYS take time to talk to people who stop and ask me. There's
usually a family member or a friend who they know who uses oxygen or
about to start using oxygen. If I can help them make life just a little
bit easier for them, it's worth a few minutes of talking with them.
Don't you think? I didn't have anyone to ask back when I started using
oxygen when I was 17 years old and still in high school. Of course,
there was no internet either!
Christine
livingono2forlife.wordpress.
The PHight or Flight Project would like to thank Christine for sharing her incredible PH journey for PHighter Friday!
* If you have an inspirational PH journey that you would like to share to help provide hope to those who are newly diagnosed, please contact me at phightagainstph@gmail.com. More information about sharing your PH journey for a #PHighterFriday can be found under the Share Your PH Journey/Contact tab.
* If you have an inspirational PH journey that you would like to share to help provide hope to those who are newly diagnosed, please contact me at phightagainstph@gmail.com. More information about sharing your PH journey for a #PHighterFriday can be found under the Share Your PH Journey/Contact tab.
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