And Then, Everything Changed, Part 1

The last 6 weeks or so have seen some massive changes happen in my life, some for the better, some for the (much) worse. I had planned a nice long post detailing the adrenal exhaustion, stage 3, I was diagnosed with, and how that is so common in my fellow ME/CFS patients, but since I’m in serious pain right now and shouldn’t even be using my left hand since my shoulder disintegrated on me (vicious attack of the refrigerator), and am beyond-exhausted from my mother’s moving from Fairfax to Houston (she’s on the way right now), I’m going to cram 3 posts worth into this one post. (Longest run-on sentence ever!)

So, here in as short a detail as I can get it is: Adrenal Stress/Exhaustion, Re-starting Valcyte, Tick-Borne Disease Treatment, & Shoulder Disintegration. My Mom’s Move will be in Part 2..

Adrenal Stress Syndrome & Adrenal Exhaustion:

I was diagnosed with adrenal stress syndrome, stage 2, at least a decade ago. Because of it, I was nocturnal for the longest time, the way Rhiannon is right now. Essentially, when you are in that stage, your adrenal glands don’t release cortisol (which is pretty much the same thing as cortisone) correctly, with the highest levels in the early morning hours to wake you up, slowly falling to lower levels until you get sleepy at night and sleep on a proper schedule.

Instead, your body releases cortisol at the highest levels in the evening, making you widest awake at 10pm or later, and it’s virtually impossible to fall asleep, often until near dawn, depending on how screwed up your body is. Even if you manage to knock yourself out with a sleeping pill, your brain doesn’t reach the proper level of deep sleep because the cortisol is too high.

For Rhiannon, this means her deepest, most essential to health, sleep comes between 6am and 1pm, which is why she is in online school – it was simply impossible for her to get up and function well enough to make it thru the day at public school.

I’ve progressed from stage 2 to stage 3, adrenal exhaustion. My adrenals are not releasing much cortisol at all at any time, but there’s much more than cortisol involved, as the adrenal glands regulate many hormones that control the way the body functions.

I’ve started on cortisone replacement therapy – the same cortisone as is used for so many illnesses, but at a level that is supposed to mimic what the body is supposed to be doing on its own (5mg upon awakening, and 2.5mg in the afternoon). This low a dose should avoid the many pitfalls & side effects of cortisone, although I did have a major candida flare in the beginning.

It does seem to be helping, so I’m glad I’ve started it. One reason we had not been able to re-test me for it was because I was on the Florinef (fludrocortisone) for Neurally Mediated Hypotension (NMH, aka POTS), and taking that interferes with the accuracy of results.

My LLMD also started me on 3 different adrenal support supplements.

As to why I’ve progressed to stage 3, I’m pretty sure we can lay the blame for that squarely on the shoulders of the stimulant meds (Provigil, Nuvigil, Ritalin) that are handed out to us patients so we can function. They enabled me to work several years longer than I should have, and I still take them when I make trips to the doctor or grocery shopping.

But pushing myself to get more accomplished has led to things being much, much worse!

If you have ME/CFS, I strongly recommend you ask your doctor about taking the adrenal stress test, which is a simple saliva test (you soak cotton rolls with salive 4 times a day). The test used to be speciality labs only, but Labcorp did mine, so apparently it’s more widely available. There is a TON of information about adrenal stress online, and just google it & dig in. I found Dr Lam’s site to go very indepth.

Re-started Valcyte:

As you may know, my 14 months on Valcyte came to a screeching stop when my blood cell counts fell drastically, which was detailed in Risky Decisions, or Valcyte: the Very Scary Adventure Ends.

I’m happy to report that over the course of a month, my cell counts recovered. During that month, though, I went thru a terrible EBV flare, and the HSV which lives in my back erupted for the first time in a decade or so.

My doctor gave the okay to re-start the Valcyte at 1 tablet (450mg) a day instead of 2 a day, and after about 2 weeks back on it my cell counts were fine, and the EBV & HSV flares subsided for the most part.

Tick-Borne Disease Treatment:

I had a very long visit with my LLMD’s CNP, and could write an entire post about just that. But let’s keep it short & say because I’m not entirely convinced that Bartonella is my biggest problem right now, and am not confident in IV antibiotics, I’m going to be starting on Ketek, an oral antibiotic which will get some Bart but also the Anaplasma I tested a weak positive to. Anaplasma is notorious for causing headaches, which I have in spades.

For more on the Bartonella issue you can read Shock and Dismay: Re-visiting Tick-Borne Diseases

And Then, My Shoulder Disintegrated:

14 months ago I injured my left shoulder trying to move a bag of dog food. We first thought it was “only” a rotator cuff tear, but as time passed & the pain continued, it became apparent that there was more than that. An MRI showed I had a SLAP tear, which is a tear in the cartlidge that holds your arm bone to your shoulder blade.

As time went on, it became less painful, and because a SLAP tear repair is really difficult & involves a very tricky surgery & intensive physical therapy, I decided to just be careful with it & add it to the list of nagging issues. It was really good at letting me know when it was going to rain, and I got used to sleeping only on my right side.

But in the intervening months, I’ve continued to have muscle wasting along with the weight loss. I’ve watched in alarm as the outlines of my bones & ligaments became more visible. Lately, I’ve really noticed it in my shoulders, where muscle has faded away and body surfaces that should be bulging outward with muscle or, at the very least, flat, have become sunken & hollowed out.

I’ve tried. Everything. Protein shakes. Force feeding myself.

I’ve been so very careful.

Every single interaction with Kodi, our at-least-120 pound 2 year old dog, who we adopted last July (at 70 pounds), has been careful. I’ve played endless games of tug-of-war with him, using both hands so I could retain as much strength as possible in that arm.

But always I was watchful, knowing he could give one wrong jerk and it could make things worse. So always I had both hands involved.

But it wasn’t him that did me in.

It was the refrigerator.

I was looking for something, with my left arm resting on top of the frig door. I leaned down & tried to see the bottom shelf.

And then it happened. There was a movement in the joint, a feeling that was painful & simply wrong. I made a noise, an inhalation of shock.

I had subluxated my shoulder – a partial dislocation.

Looking in the refrigerator!?!?!?!

Luckily, I had an appointment with my PCP the next day (Thursday), and showed up with my arm in the sling.

My shoulder was kind enough to subluxate itself again as she was gently examining me. There were noises from both of us this time, since her hand was on it when it happened.

As she put it, it is likely I made a small tear into a really large tear. There was no muscle there to hold the joint in line properly. I was sent for an xray to be sure I didn’t chip any pieces of bone off but haven’t gotten the results yet.

I am beyond dismayed, frustrated, appalled, overwhelmed, and angry. And in constant pain. Every movement of my neck, hand, arm, etc, affects it.

I am also afraid.

I don’t know how on earth my poor body is going to handle surgery. Can it process the anesthesia correctly at my very low BMI & general state of dysfunction? Will it have the ability to heal? How can I do PT (which will have to be at home)?

I really, really, didn’t need anything like this. It’s hard enough just getting through the day!

And finally, yesterday the movers came, and my mom is in transit from an hour away to Houston, which will be Part 2, when I can get to it.

That alone brought a lot of changes (and furniture) into my life. Stay tuned for more!

Thanks for reading, my friends, and feel free to comment!