Stuck in my Head: An Update Post

Doctors and procedures and tests – oh my!  This has been the theme of my life lately.  I’m being pulled in so many directions by so many different doctors and practitioners that I can’t even process everything that’s going on.  I already spent the last two weeks doing a bunch of testing, now this next week is getting filled up already as well!  Sometimes I feel like I just can’t catch a break.  Can I take a medical vacation?  Like, is that a thing?

I have a Pulmonary Function Test (PFT) scheduled for Monday.  My rheumatologist recommended this test as a baseline because eventually the Limited Scleroderma will cause lung issues as the disease progresses.  If you know anything about me, you know that my medical anxiety is off the charts already.  I know that this is supposed to be a simple, non-invasive procedure, but I am still freaking out about it!  I don’t like any medical facilities or practitioners.  It triggers my PTSD symptoms and that is really hard to deal with, so I avoid as much as possible.  Luckily, this particular office has already been informed that I require a caregiver with me at all times, so there shouldn’t be too much trouble about Michael going with me… hopefully.

The rest of my cardiac testing will be completed on Thursday.  The doctor has ordered an echocardiogram and a carotid ultrasound be done on me.  These will both be done on the same day so I can just get them all out of the way.  I meet with my cardiologist at the end of the month to discuss the results and what everything means.  It’s all so scary and confusing.  The heart is a major organ and there is definitely cause for concern considering the way mine has been acting lately.

My weight loss seems to have stabilized – at least for now.  I weigh 167 at the moment and I am totally okay with that.  It was downright terrifying when I was losing 20-30 pounds in a month for no apparent reason other that the stress of my life stopping me from getting an appetite.  I’ve been living off of the very few bites that I can force myself to take.  My husband seems to be a little less worried about me now that my weight is holding strong.  I’m so glad to see him look at me without the excessive worry in his face.  His worry was starting to worry me!

I did get the official, formal diagnosis of interstitial cystitis this week.  This is definitely not something to celebrate, but at least I now have a name to go with the painful bladder condition that has plagued my life for over a decade.  I feel like a small child, always running back and forth to the restroom.  Constant, chronic bladder pain every single day of my life for the rest of my life is just not very appealing.  This is yet another condition for which there is no cure – only treatment of the symptoms.  I get really depressed when I think about it because no matter what I will always have this painful disease.  I’ve tried some of the medications recommended for this condition, but so far none of them have helped.  We are taking the next step in May.  My doctor will be doing bladder instillations to hopefully help my pain, so keep your fingers crossed that I can get some relief soon.  This condition is the most painful of all of my diseases.  Pray for me y’all… I still have way too much going on with my health.

Stay safe autoimmune warriors and friends and family!  Love and light now and always!

1 thought on “Stuck in my Head: An Update Post

  1. I did the breathing test a few weeks ago. I’m glad that your hunny will be in there with you, it would have helped me out too. The tech who performed the test was also very patient with me as I had to do certain tests a few times. Definitely bring some water. Good luck!! Fingers crossed for you

    Liked by 1 person

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