For some time now, since the “protein wasting,” also called muscle wasting, and unintentional, major weight loss started, two years ago or so, we’ve been refering to my overall health status as “precariously balanced.”
When I say “we,” I don’t just mean Rhiannon & I, but also, my doctors. We are a team, working collaboratively to keep me alive & as functional as possible.
But my body is precariously balanced, like a scale or these stones, and every decision, whether to add meds, subtract meds, change my diet or supplements, had to be figured into how it would impact the overall balance of my body.
So precarious is the balance, there is no room for error anymore.
The two most important factors became:
- Stop the weight loss and the muscle wasting. This is likely, at least in part, because of the adrenal exhaustion. The body tries to save energy by shutting down digestion, and scavaging from muscle, which releases all sorts of toxins, as well as being generally disconcerting.
- Don’t stress out, not over anything, since my adrenals are already exhausted, and we didn’t want them to get worse.
Over the last two months, however, all hell broke out in our life, and the balance is really teetering.
The re-cap, for those who missed it:
First, adrenal issues became worse, my mom moved and my shoulder disintegrated (SLAP tear – a Very Bad Thing). Then, Rhiannon’s father became critically ill, and after a week of complications, he passed away. I made a decision to take Rhiannon to Ohio (could hardly have been more stressful – thank goodness for the loving support of our friend, Kathy, with whom we stayed) knowing full well the ramifications for my body would not be good, and it could “push me over the edge.”
Since we returned, I’ve been resting, resting, resting. Eating, a lot. But also having disturbing, and sometimes, frightening, new symptoms, that have led to multiple doctor visits & consultations.
Here’s where I stand (err, lay):
- Most disconcerting, I have lost 5 very precious pounds since my visit with my PCP 4 weeks ago, despite taking our blender & “medical shake” mix & assorted edibles to Ohio, and eating a fair amount at Kathy’s home.
- New symptoms include episodes of extreme weakness & shakiness, often with trembling.
- My brain tends to go into shut-down mode when this happens, and I get what Rhiannon calls the “lost puppy look.” If we are out (have had to go out for multiple doctor visits plus groceries, etc) she will take me by the arm & guide me out of the store. I have limited comprehension when this happens, way beyond brain fog. This is not entirely new. What is new is the quickness with which it happens, after just moments on my feet.
- Something has definitely tilted in my adrenal system. I seem to respond to even tiny annoyances with a dump of adrenaline that induces the fight/flight reaction – usually, fight. In other words, I find myself getting really angry a lot over stupid shit that wouldn’t have bothered me before.
- There is also The Hunger. The ravenous, give me food NOW or I WILL KILL YOU Hunger. This is certainly very, very new, since a month ago I was still forcing myself to eat. The Hunger comes on very fast, demanding to be satisfied immediately. It’s a very bizarre feeling. I’m craving sugar, salt, carbs, meat… and if The Hunger is demanding to be satisfied, there’s not much I can do to stop myself from stuffing my mouth with whatever’s easiest. Rhiannon has hidden the chocolate & sugary foods, since they aren’t good for me, and just feed the yeast (candida).
What my medical team thinks:
- Knowing that I was in adrenal exhaustion before all this happened, and being very tuned into my body, I became very concerned that I was teetering on the edge of adrenal insufficiancy. Many of the symptoms I’ve been having are very typical of that. My medical team agreed.
- The biggest concern with adrenal issues is adrenal crisis, which can be life threatening, and develop quite suddenly. Rhiannon has instructions on when to call 911 or take me to the ER, but hopefully we’ve headed that off.
- Hypoglycemia (low blood sugar) is also a concern, and I had this as a teenager. It could account for some of the shakiness & trembling.
What we’re doing:
- Many labs were drawn yesterday. I’m having a lot of bruising, so am concerned the leukopenia is back. Who knows what else will show up.
- My PCP prescribed a glucometer (those things diabetics use to test their blood sugar) and wants me to check mine several times a day to watch for hypoglycemia.
- My cortef (hydrocortisone), which I started on only a month ago to treat the adrenal exhaustion, originally at 5mg in the morning & 2.5mg in the afternoon, has been doubled. This is not a large dose. My adrenals should be making cortisol (the body’s equivilant) but they are not. This dose is just to replace what is missing, as cortisol is essential for the functioning of the human body. I definitely feel better on a higher dose.
- I had been taking florinef (fludrocortisone) only as needed, a half tab every 10 days or so, but until my body stabilizes, I need more. This is to treat Neurally Mediated Hypotension (NMH), aka POTS. It is commonly seen in both ME/CFS patients as well as patients with adrenal issues, and is associated with very low blood volume.
- I’ve started monitoring my protein & calorie intake again with an app on my phone. It has a goal weight for me as well as my current weight, and tells me how many calories I need to eat to gain weight. It’s pretty cool – even has a barcode scanner.
- I started on Topamax a month ago at 25mg for a week, then 50mg for 3 weeks, always at night. This is the one & only thing we hadn’t tried for migraines, and we hadn’t tried it because it can cause weight loss in some patients. But it does seem to be helping with the number of migraines & their intensity, so we’re sticking with it, and bumping me up to 75 mg, the level most patients need to see real improvement in migraines. Some need much more. It makes me very sleepy & incredibly loopy, much to Rhiannon & Ben’s amusement.
Mostly, I’m just resting, staying cool, well hydrated, eating a lot, meditating & deep breathing to reduce stress, and trying to relax & let my body regain its delicate balance. It’s going to take a while, perhaps a long while.
My shoulder still has to be dealt with, but not now, I can’t take the stress, whether of surgery or going out to see the orthopedist or having the MRI. So I’m dealing with the pain, which is pretty bad, hoping that the “sub-chondral loosency” that showed on the xray, and can mean the bone is getting necrotic, is not getting worse. I’ve already had one necrotic bone, so it does need attention as soon as I can safely go out.
Deep breathing. Not thinking about it.
Remembering how many friends & family members are out there showering me with Love and good energy…