I’ve been better than this before, I know you’ve seen me be

I’m almost amused with the myriad of different ways I can find to instantly distract myself whenever I come to make a post here. “Oh look! These plugins need updates! Must fix now!” “That’s done, now time to write, wait.. who’s singing the song on my iTunes. Let me check that out. *pause* Oh yeah… I forgot about her/him/them. Let me go see if they’ve got any more stuff on iTunes I can buy/add to wish list for later.” And then I end up in a YouTube spiral, hunting out more music. Or I end up on Facebook or Twitter and completely forget I ever opened a tab to start writing. Sometimes, like just now, I get a phone call as I’m writing, asking what it was I needed to buy at Petco, so I end up spending way too much on their website, trying to remember what it was that I wanted to buy for Bennett, my hedgehog. Yup, I am most definitely a master of procrastination and distraction.

Life has been quite an adventure the past few months. I’m tired of always being tired and sore and in pain, so I started seeing a rheumatologist last year. The first visit went well, and blood work turned up a few interesting possibilities. I had a positive ANA test (1:160), which can suggest lupus amongst other diseases. The doctor shortly ruled lupus out, however this was at the same time she began confusing me with my mother; who was also a patient of hers. With her confusing the two of us, ma’s hand wasn’t properly diagnosed, and I was no longer confident in her stating that there was no chance it was lupus for me. I wanted the result to be “nope, not lupus”, but I also wanted to know for sure it really wasn’t, and that she wasn’t using mom’s history/blood work to come up with that diagnosis.

After getting a copy of my medical records from that first doctor, I sought out another rheumatologist, and had my first appointment with her at the beginning of the year. I instantly liked this new doctor, and felt more secure when she said “I’m positive it’s not lupus” after reviewing my files. She also ran a bunch of blood work, more than I’ve ever had done at once. I’ve joked that it was almost enough blood to be a donation, instead of a draw for blood work. That blood work turned up a bunch of interesting positives, several of which require further testing to know if they’re true positives or false positives. She also ran another ANA with this blood work, and this time it came back negative.

I’ve already seen one specialist so far, and he has me scheduled for a biopsy via upper endoscopy to confirm/deny celiac disease. From reviewing the blood work that the rheum sent over, he’s thinking it’s a false positive, but the only way to know for sure is the biopsy. I’ve also got an appointment with an endocrinologist coming up to see if I have thyroid problems, since my TSH came back abnormal. About 20 years ago, I had a doctor tell me she was convinced I had a thyroid problem, but all my tests have always come back in normal ranges. She had mentioned, back then, that it can some times take a while to actually show up in the blood tests. I don’t think she figured it would take 20+ years, though. 😉

In that initial blood work with the new rheum, there were also some issues with a few areas in my CBCs running high, and so she kept having me come back to get those rechecked. One of the repeated tests consistently ran quite high and that, combined with the positive Lyme disease test in my original work-up, made her decide to send me to an infectious diseases oncologist; once again to confirm/deny if it was a true positive.

I really do like this new rheumatologist. She is every bit as dedicated to finding out what exactly is going on with my body as I am. A few times, she’s commented to me that “A person of your age shouldn’t be in this much pain. We need to know what’s causing this.” It’s so nice to be taken seriously by someone, when you’ve got an “invisible condition.” A diagnosis is exactly what I want, probably more than anything. I know that a diagnosis is not a solution. But, to me, a diagnosis is hope. Then I’ll have a name for what I’m fighting. An identified foe, instead of a nameless malady. Sure, there’s always a chance that the cause of my head-to-toe pain isn’t curable. But knowing what it is provides proper treatment. It gives us something specific to target when trying remedies and ways to lessen the pain so I can attempt to lead a more “normal” life again.

I miss who I was before pain was a constant companion in my life, with its presence always increasing. I want to shove it back into the background again. I want to be me.

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