Bloody Lymey

A Blog About Living with Lyme Disease

If I Could Have My Life Back …..

This post isn’t what you think, I’ll bet. If I read that title, I would think it’s a whiny post about living life like normal people or maybe some kind of self-pitying thing. It’s not. I assure you.

With the doctor discussing Sjogren’s Syndrome, I started reading. Like MAD. I’ve pored over websites, trying to gain a better understanding – not just a broad overview of the common symptoms, but the subtler ones. I wanted to find a consensus about the prognosis and what to expect if it progresses and can the progression be arrested?

Reminds me of the olden days.

They talked about MS. I spent hours reading about MS with the similar frame of mind I am in right now – well, maybe a bit more frantic. That one scared me more than the others.

Then they said the L word. No, not Lyme. Not yet. LUPUS. And I read and I read and I read.

Then they talked about RA. In fact? They treated me for it! They thought I might be among some random number of folks who falsely test negative. I didn’t respond to treatment, but I did read. Oh, I read about RA. And I read about people who falsely test negative. And I read about people who falsely test negative and don’t respond to steroids …. just to scare myself more because I’m always sure that I’m one of those rare-bies. 🙂

THENNNNN they talked about Fibromyalgia. And I don’t know why that dink didn’t do the test right there – I was outraged when I got a smarter doctor who touched a bunch of pressure points, saw me not flinching, and said I don’t have it. But when bubble-head “talked” about it incessantly, I read about it incessantly.

The list goes on and on and on.

If I could have my life back – those wee hours of the morning, those late nights – I could take a 2-week vacation (and that would count the time spent sleeping, too). Why do I do this to myself?

Well? It’s to have some notion of having control over something which I have NO control. I can’t control whether or not I have Sjogren’s. It’s good to read about these things – oh yes indeed!!! But moderation is the key. There’s a point where you’ve read all the realistic and credible stuff and then …. it’s folks selling snake oil at quasi-reputable places like “Vitamin World” (made up the name – insert the name of what ever is at your local mall , etc.). Then there’s people who say that they have been cured by a tarantula bite ………. or by contracting and then being treated for malaria. Or insert some other outlandish thing.

I need to just stop. It doesn’t matter. Knowledge IS power, but there’s a limit to that power and reading and reading and reading isn’t going to make me more powerful. This shit I have – Lyme, Chronic Lyme, Late Stage Lyme, Post Lyme Syndrome and the autoimmune things my body wants to throw in the stew – is here whether I read about it or not. Do I REALLY want it to take even more of my life away, reading away on a computer monitor?

I’m going to go cuddle with my HONEY. Good night.


I’d Rather Show Smiles than Sjogren’s

Of course today was my doctor’s appointment and I was FINE. A topic came up: Sjogren’s Syndrome (Pronounced: “Show-grins”).

“Why?” You ask?

Well. I mentioned my sweating – or lack thereof. I haven’t mentioned it before because …. it’s natural to go to doctors with COMPLAINTS. Feeling confident, confident, dry and secure on a hot and muggy August day when my friends have damp curly hair and wet underarms isn’t such a bad thing. Is it? But …. I brought it up. She asked me some other questions. Yes, the heat does bother me sometimes – even sans sweat. Headache? Why yes! For two days with neck pain. Dryness? Well….. I’ve been a thirsty person since I was born. That’s my baseline. I wake up sometimes with dry eyes – like anyone! – and blink a few times and it passes. But my eyes …. pressure and sometimes blurry. [I told her during my last visit when my complaints were neurological]. Neurological. That sounds more like Sjogren’s than RA – and she’s going to test me for that, too, since my last test was four years ago.

I read about it and a website mentioned the metallic taste. Hmmmmmm. I’ve rassled with this one for years. Sometimes my coffee tastes horrible. Sometimes I’m bitterly disappointed in Dunkin’ Donuts. And my coffee maker at home. And Starbucks. How can they ALL suck? Well. It’s not them. It’s me.

Reading more about it, it might explain better the horrible progression of my teeth. Two dainty lil’ cavities and my teeth are rising far above my gum line and the dentist has used the term “bone recession” with regard to my jaw. He said it doesn’t flush with the condition of my teeth. The lady who did the “deep cleaning” told me to expect it to take a long time. It didn’t. She was amazed by how “clean” they were below the gum line, adding it didn’t match my x-rays. Two puzzled dentists. Two.

So the plan: I’ll be tested for a rash of things – but not a rash itself – in the next fiscal year (starting July 1st) so I’ll pay one deductible for alllllll these services. Why pay one thou’ when I can shell out a mere $500? A mere $500. Har har har. Yeah, I’m miss money bags [not at all]. But it sounds better than $1,000. No commas. No commas are GOOD.

And I’m going to be referred to a Rheumatologist. And that sounds good to me, just to have a second opinion (and my brilliant and aggressive Dr. C. used that term).

I’m glad I felt good. I don’t think this doctor has seen my everyday non-sick self like …. EVER. I could also articulate my symptoms better than I might have last week when I had that massive brain fog.

So, I’m back to wondering what’s going on.

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