I live, write, and garden in the PNW with my husband of 27 years, disabled daughter, college-aged son, and my 84-year-old mother. We have paid off $250,000.00 worth of debt (if you include the interest) in the last fifteen years and as of 6/12/2020 are 100% DEBT FREE!!!!I am still not back to normal after our trip to Seattle for DD's operation. It has been a week since we got back. I am still in pain, still have a massive amount of inflammation, am dragging like a person who never gets any sleep even though I am getting sleep, and am stuffy. I hate it when my RA flares up like this. I've made the decision to not go with DH and DD when they go for the surgery follow-up appointment. My body just cannot take these long car trips, although it may have been the hotel bed that made it the worst.
I don't know if they will have the biopsy results then or not, but I hope they will. Except for that one spot, things looked good. If there is nothing wrong from the biopsy, I guess we are back to square one. I want to get her tested for Von Willebrand disease. This is secondary to whatever else is going on, but she is getting daily nosebleeds two to three times a day that take a long time to stop and they are coming from high up in the nasal cavity. Along with the other bleeding problems she has had in the past, it would make sense if she has this, including when there was blood in the bladder for no discernable cause. We had her tested for a couple of other bleeding disorders before, but not this one.
So just as a recap, what's been diagnosed so far:
Hypothyroidism
Secondary Adrenal Insufficiency
Gasteropaeresis
Granuloma Anularae (autoimmune)
Some unspecified autoimmune disease they haven't tracked down yet (not RA, MS, or Lupus)
Neuropathy
Migraines
I am suspicious that she may have fibromyalgia, although I kind of feel like that is what they call something when they can't find out what it really is, because she has all the symptoms of it. And from what I can see, the treatments tend to be pot, muscle relaxants, and anti-depressants. She can't take anti-depressants because of the gasteroparesis (they make her puke and flare constantly) and she doesn't want to take pot, which we are legal for here in my state, but I don't want her taking it either. She's already on a muscle relaxant and it doesn't do much.
She does have autoimmune markers in her lab work, they just don't know what it is. And it is not the granuloma anularae causing those markers. It's probably something impossibly rare.
She also, of course, has never been the same since the skull fracture and broken tailbone when she fell in the creek when she was 16. Lots of brain fog and issues with reading and doing math even six years later. I still marvel at the fact that she graduated high school.
I just want us to find a way to make her pain better, so that she can function with some quality of life. But for that to happen it seems like we have to find the thing they can't seem to find.
At least since the gasteroparesis has been more and more under control, she is more positive and happy. I guess not puking on a daily basis will do that to a person. Also her hair has stopped falling out since getting that under control, so there's that. And she's no longer anemic, though she is only just above the line.
As for me, I'm still waiting on the Enbrel. The doctor and the pharmacy need to get stuff straightened out, but I have the co-pay card, so at least when they do, it will go forward. If I haven't heard anything by Monday I will call the doctor's office and try to push things along.
I also want the doctor to do a blood test for my cortisol levels and to check my thyroid. I think something is going on there, especially with cortisol. I felt so much better on the steroids, like a normal human. Of course, I could hardly sleep, but I was amped up enough it didn't matter. My reaction to them is what makes me think my cortisone is messed up. While I'm at it, I should schedule a mammogram, too. Maybe in another week I'll feel good enough to get on that.
Big Medical Update on DD
February 16th, 2019 at 03:51 am
February 16th, 2019 at 01:46 pm 1550324760
Praying that you and your daughter find the good health you deserve!
February 17th, 2019 at 02:17 am 1550369876
February 17th, 2019 at 02:21 am 1550370107
February 17th, 2019 at 03:58 am 1550375910
February 17th, 2019 at 08:43 pm 1550436197