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Saturday, April 11, 2015

The not so fantastic life of autoimmune diseases.

One of the fun (sarcasm) things about having autoimmune diseases, as well as other diseases or sickness, is the fact that you can have these random and odd symptoms pop up out of no where.  If you don't document what's going on, they can be gone in a flash and then forgotten until it happens again, if it ever does happen again.  These uncommon, and sometimes odd, happenings could be a gateway to the right diagnosis and treatment.  You need to DOCUMENT EVERYTHING!

I may have mentioned before that a friend of mine had given me a journal a while back, happily titled, "I'm Going To Die."  I could really use a new one to start fresh going forward because if I do hand it to my doctor and say, "Read from this page going forward," they end up going backward looking at my chicken scratch of shit like my diet and weight loss from years prior, missing the point of the smaller, and most recent things that should be standing out.  And though it's almost always with me, it has been neglected far too much.  What I should be doing is consistently documenting it and then also placing color tabs in it showing weight, symptoms, or medication adjustments.

My brain has been absolute mush lately.  The other day I thought 2015 was 2 years ago, that we were already in May, that last week was this week and almost missed a doctor appointment if I hadn't checked my voice mail from the day prior.  Lately I've been questioning my total thyroidectomy, if it was really the right decision.  Knowing what I do now, I feel my endocrinologist at the time was adjusting my meds too quickly.  If it's so easy to regulate when you have no thyroid, and it supposedly only takes around 3 months to get the meds to even out your system, how come almost a year later, & on the same dosing, my TSH is STILL dropping making me hyperthyroid?   I should have switched endocrinologists months ago, when I told him I was feeling hyperthyroid and he started passing me off as diabetic.

'Alohi trying to comfort me.

I've become depressed again.  No one wants to be around someone who is sick all the time.  At least those who don't understand what I'm going through.  Plus you realize that people who have been with you since the start of it all still don't get it.  I also don't want to be around people who don't understand what I'm going through.  I don't want sympathy, nor empathy or suggestions to help fix me.  My idea of being strong right now is avoiding most human contact and stressful situations.  Usually by hermitting myself in my home and crying most of the day.  I've tried many times to write about my depression but have found it too difficult.

May is going to be full of changes and it can't come any sooner.  I have a new endocrinologist and rheumatologist lined up.  The last time I went to a rheumatologist was at the end of 2013, before I had gone back to work from my leave.  I was in so much pain on synthetic T4 medication and, at that time, no one was associating it with my medication or, lack of, thyroid.  I've mentioned it before, how the internal medicine doctor diagnosed me with fibromyalgia and was pushing... PUSHING... Lyrica on me.  My PA under my primary doctor had already addressed my increasing pain and recommended I see an rheumatologist.

You're probably thinking, "Well, if your other doctor told you to see a rheumatologist, how come you went to internal medicine?"  Unless it's blatantly obvious what's wrong with you, which probably 99% of the time it's not when you have thyroid (or most other) autoimmune conditions, it can sometimes (and usually does) take a month or more to set up initial appointments with new specialists.  So when your body is screaming with pain, you're going to start searching and reaching out to anyone for answers to MAKE IT STOP IMMEDIATELY!  Yet that can become a problem.  A problem of misdiagnosis and incorrect treatment.

What I did learn from that rheumatologist appointment was that I did not have RA, but I did have ANA which suggested lupus.  After a few appointments and notes that my pain was most likely due to my (lack of) thyroid, and with no further mention of lupus or ANA, AND with the pain starting to diminish with the start of NDT, I thought it was unnecessary for me to continue to go.

Fast forward to now.  

Those little hiccups in your health that you might ignore could mean something.  Googling symptoms can usually overload you with incorrect information, and WebMd Symptom Checker always points you to some sort of cancer.  Yet sometimes, just sometimes, things will stand out.  Something that has bothered me for YEARS and I just never really thought about it, was the sensitivity to sunlight that I have.

No I don't break out in hives or blisters, nor get sunburns if I'm out in the sun.  Then again, I'm rarely in the sun so I probably wouldn't know. What does happen is that I get nauseous, light headed, dizzy, and headaches that sometimes are borderline migraines.  It's been on and off for years, and when I lived in CA the constant sun was pure Hell for me!  I started noticing it again the last few weeks as it has been on and off sunny.  Even if it's cloudy, if it's bright out I want to rip my eyes out or my head off.  If the day would start off dark and gloomy I might feel fine, then the sun would come out and I'd feel like death, then it would go away again and the death feeling would go away.  Factor in other things like losing my hair again, skin rashes, burning joint pain that feels like it's in my right hip, I think something else is going on.

I reached out to a friend of mine who I knew has lupus.  Like thyroid disorders, lupus can sway in many directions as far as diagnosis, symptoms, and treatment.  There is also a lot of similarity in symptoms of lupus and thyroid diseases.  Considering I have ANA, no thyroid, and am still having all these issues, I figured it was time for some new doctors.

I just wish I was being treated right and felt better now.  I can only pray that will be soon.

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