One More Day: A Scleroderma Update

27ae5ebb-dad2-4ffa-8e33-8c907fda39e3I finally dragged my anxiety-ridden self into the barium swallow exam that I cancelled last month.  I feel like a fool for having so much anxiety about the actual exam.  It was super simple… take a couple of bites of food or sips of a drink with the barium in it, while they video x-ray the food and/or drinks being swallowed.  The technician was really nice and extra careful with me because of my anxiety issues.  I made it through the whole test with ease once I relaxed a bit.

The concerning part of the day came afterwards.  There were a few issues that were found in my exam.  I have an issue that has something to do with the back of my tongue, which wasn’t really that big of a deal – yet.  As far as the esophagus, that’s where we have a problem.  My food and drink is coming back up… this I was not aware of.  I had my esophagus stretched back in October, but it looks like it needs to be done again already.  So, I’m pretty upset that I might have to go back into surgery.  I’m even more upset that this disease is also progressing.  This is worse than aging.  This is getting closer and closer to my untimely death, and that bothers me!

0a108b07-54ca-41d8-9ce9-7b50851fd9e7I have to mind two very different, very serious diseases and keep up on all of the labs, scans, tests and procedures that are necessary for the monitoring of my conditions.  It’s a full-time job and right now I am beyond overwhelmed with all of it.  I want to quit.  I want to give up.  I want to stop going to all of the doctors and specialists.  I want to quit getting bad news.  I want to run away and hide from all of this.  I can’t escape it, though.  We are stuck together for the rest of my life, whether I like it or not.  I think about my husband and children and that is the only thing that convinces me to fight for me life, even if I tell myself it’s just for one more day.  That’s all I can ever give… one more day.

8f6b2d35-acaa-4495-a96d-9081d998ec7fAfter this particular bad day, my poor husband was left without words.  The only thing that he could think to do was to take me out for a banana split at the local Dairy Queen and let me cry it out.  I had basically just been told that at some point this disease will progress to the point that I will require a feeding tube.  I’ve never been much of a foodie, but the thought of a feeding tube really, really bothers me.  I’m already losing a bunch of weight with my appetite problems, I can only imagine what this will be like in ten or twenty more years – Gods willing!

Through all of this stress and strife, Michael has been my rock.  He has watched me walk around in a daze for a week now.  I’m still trying to process everything that is going on with me, medically.  I’m in shock.  I’m in denial.  I’m lost and scared.  He has watched me go from crying to screaming and back to crying more times than I care to admit.  He’s still trying to pick up my broken pieces and put me back together, but this time he just can’t.  He has to sit on the sideline and watch me slowly die, knowing there is nothing that he can do for me besides love me until the end.

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Stay strong autoimmune warriors and family and friends.  Love and light to each and every one of you.

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