CF please vanish

There are some days that I wish CF didn’t exist.  Today would be one of those days.  Don’t get me wrong I wish it didn’t exist at all but when I’m having a particularly not so good day, it is fresh in my mind that I wish it didn’t exist.

My body has been aching along with the shoulder pain I’ve been having.  The shoulder pain got worse after the course of oral antibiotics with Levaquin which is known to cause tendon and joint pain.  Well I guess it decided to pick me as usual but this time is much worse.  The pain is a burning sensation in my shoulders whenever I move them certain ways, especially backwards or across my body.  My left shoulder is much worse than my right, which I attribute to my fall while blacking out from coughing a few weeks back, since I fell on that side.  I’m did get a cortisone shot in the left shoulder and it did nothing at all.  I’m still hoping that one day I will wake up with no pain.  Good luck with that right.  I need to make another appointment with my primary doctor just to be referred for physical therapy.

Onto other news…the CF community was rocked when 15 year old Emma passed away earlier this week.  I am friends with her mom.  Sweet Emma is no longer struggling and breathing easy.  It is always hard to lose a CFer no matter if you know them or not.  No, I don’t know everyone that has CF but I know quite a few.  When it is someone close it is hard to know that you have the same disease that just took that person from this world.

On top of that I have another CF friend that is about 1.5 years out on her lung transplant who is now in the hospital on the vent with pneumonia and fluid build up around her lungs now.  She needs major prayers.  See what I mean, CF needs to be cured.

Symdeko update…It’s been about a week and a half on the drug.  No miracles as you can see.  I don’t know if the achy body is from the drug or not.  I’m coughing stuff up which I always do, no major change there.  My bowel movements are normalizing which is good.  I don’t have any extra energy like some have said they have.  Heck if anything I’m more tired, I don’t know how that’s possible. haha.  I have been short of breath the last couple of days with a loose/rattly cough.  It’s good that it is loose but it doesn’t mean that I am coughing stuff up all the time.  Remember I do have asthma and bronchiectasis as well which play a part in all of this too.  I have an appointment with CF clinic the 3rd week of May so we shall see what my lung functions are at that time.

Until next time…

2 thoughts on “CF please vanish

  1. Hey, thanks for sharing about symdeko. I just started and at week 2 all the side effects are hitting me at once.

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