Living with Scleroderma

this is nothing but a curve ball

Early 2014 appointments

Right after the holidays, everyone started getting sick around me, both at work at with the family, except for me. During the last round if virus going around, I ended up with a small cold and then I started coughing again, headache and weakness followed by my joints and my whole body feeling really achy.
I had one Rheumatologist appointment and one Pulmonary appointment in January that ended up with new prescriptions, a Barium Swallow Test, a chest x-ray and a referral to take another Pulmonary Function Test.
The Barium test was to check if I was having food (in my case—my pills) stuck in my throat because my esophagus was closing up. The test itself was unpleasant and I really would prefer never to do again unless I absolutely have to. They gave me a container of Barium powder they mix with liquid. It tastes like chalk or unflavored Pepto Bismol. I had to sip it through a straw in different positions (even uncomfortable ones) including some lying down while they were taking x-rays of the liquid going down to my stomach. The worst part is that I had to fast the night before and my stomach was empty and drinking all that liquid was about to make me throw up. When the test was over, I rushed to the restroom to rinse my mouth the white chalky residue from the Barium.
I have been taking a Pulmonary Function Test every 4-5 months so I’m quite familiar with the routine. They make you breathe and hold your breath and blow on the tube to measure my lung capacity and other numbers they needed. I thought I did so much better than my previous tests because I didn’t have as bad of a coughing fit compared to before, so I was looking forward to an improvement with my results. My doctor also requested for a 6 minute walk test to make sure I can still walk without needing an oxygen tank. The normal oxygen level without needing a tank is 90% and over. And all my previous tests showed I was at least at 96%. So you could imagine the shock in my face when I barely started walking and my oxygen level dropped to 87%. The technician that was helping me advised me that we’ll be redoing the test but now with the assistance on an oxygen tank. I was a little upset. I couldn’t believe it. My previous test not even 6 months ago was fine. How could my results have rapidly declined since then? I asked the technician for a “re-do”, because something must be wrong with his oxygen monitor. He was kind enough to let me do it again without a tank but to my dismay showed the same results.
The following day, I get a call from a medical supplier to deliver an oxygen concentrator, 2 small tanks that could last me 2 hours each on a 2 liter setting, a refiller for my tanks and a 24 hour tank in case of an emergency. The whole experience was overwhelming but at the same time grateful to finally get some explanation and relief from the weakness and headaches. The last thing that I would have ever guessed is that I was lacking oxygen.
I’ve even started using oxygen while I sleep and it’s been helpful in keeping me from coughing in the middle of the night. And not to say that I’m completely cough free at night when I sleep, but I’ve only woken up 3 times in the last 3 weeks and that’s a big deal for me.
I do have to say that my nose has been bleeding more frequently than it used to ever since I started using oxygen. As it turns out, the air was causing my nose to be extra dry. Hubby picked up a humidifier attachment and it worked wonders.
I just had an Echocardiogram last week , so I’m waiting for those results also the numbers from my last Pulmonary Function Test.
Me currently now being put on oxygen means that my scleroderma is progressing. My rheumatologist prescribed 2 more Rituxan infusions; one this Wednesday and another in 2 weeks.
I’m grateful that my attending physicians are quite aggressive with my treatments. I trust them that they know what they’re doing but most of all, I still have faith in God that He is a God of miracles and we’re not giving up until God says it’s over. 🙂

1 Comment »

Holidays 2013

For a while there, I actually forgot that I was sick. I did have my usual on and off cough but I was able to hang on during the holidays. I’ve been able to hang out and go out with a few family and friends.
And although I absolutely love amazon prime, I was also able to do some shopping for some Christmas presents and supplies.
I decided on a semi handmade (for the most part) Christmas kind of presents for most of the people on my wish list. I made flower pens, scarves, gloves, caramel popcorn and dinosaur necklaces with hubby’s help.
I have to say that Christmas 2013 is my favorite Christmas so far. “Santa” gave my son a bike, my daughter a dollhouse and me a drumset. The hubby got a grill and used it on that day.
But it wasn’t my favorite Christmas because of what we got but because of the joy we had preparing, choosing, making and even wrapping each present for the people we care about.
It was also great that the kids are old enough to participate and appreciate in the celebrations and understand the reason for the season.
With everything we’re going through, it makes me feel good knowing that God is the only thing we need and should because He has already provided for us long before we knew we needed something 🙂

Leave a comment »