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asleep at mal 9/09
alumiere
That which we do not talk about part ?? 
4/21/10 14:53
asleep at mal 9/09
This will be a two part entry, but first a bit of intro. If you catch my regular tweets, you'll see a lot of short posts about what I'm doing today and how I feel physically. Lately those have changed from discussing GI (gastro-intestinal) issues to talking about pain levels, energy, heart rate, numbness more.

It's not that the pain is any less when I have GI issues, but the GI problems were so bad and so frequent that mentioning the rest became of little importance in comparison; it was the inability to keep food in my body that was the most important problem that day.

GI TMI, you have been warned.

This first part was prompted by a GI TMI things we do not talk about post jaylake made.

I'm uncomfortable about laying this out so specifically but Jay's right, we need to talk about it. In my twitter stream I use a sort of shorthand that's a bit less obvious than what I'm going to talk about here, so here are the definitions:

* nausea, stomach upset, puking - all fairly self explanatory. However, if they're bothering me enough to mention it's bad. Mild nausea is a regular occurrence, generally at or immediately following mealtime. I also don't usually mention puking unless it's bad or I'm puking repeatedly; I normally throw up right after a meal or a workout every week or two when I'm otherwise feeling average.

* food in, food out - I've just eaten, now I have to run for the bathroom; serious diarrhea. Frequently occurs for several hours to days depending on how bad it is; when I'm having day(s) like this I struggle to not get dehydrated and/or move too much as I'm not keeping any calories, it makes me very dizzy, and a workout or even a walk sets it off again. I also don't mention a single bout of the runs; it happens too often to be of note otherwise.

The GI issues seem to be somewhat better since I stopped taking the fluconazole and vfend, but they are still there. Since I can't really predict them they often hit so fast I barely reach the bathroom. And still I consider making it to the bathroom to be a successful round of GI misery.

Because sometimes it is so bad I get lucky to make it from the couch to the kitchen sink before I throw up. And then I usually manage to make it from the sink down the hall and into the bathroom before continuing until I dry heave. But wait, it gets better; if I do throw up in the sink, I have to hope that someone else is here to clean up after me; if I get done vomiting and go to clean up my mess guaranteed I'll start puking again as soon as I see it. And all this means cleaning the toilet, sometimes 3-4 times/day, because if I go back and I haven't cleaned it then the next round is worse. Totally revolting and humiliating.

Diarrhea is worse in some ways and less-so in others; if it's at home I usually have on a dress or sarong and/or a robe, and I keep a towel folded on my spot on the couch just in case. The I didn't even know it was going to occur is frequent enough that I'd rather be safe than sorry. And lots of days whenever I feel gas coming I run to the bathroom (which often results in nothing but air) - it's slightly less embarrassing. But to have had repeated incidents where I've taken a shit in my clothes is horrifying to me, and I hate that it happens. The doctors tell me it's a side effect of the anti-yeast meds or the pain meds or the diet, but seriously, it totally flips me out every time.

So when you read about me canceling plans or having a bad day because of stomach issues, be assured this isn't some meh, I don't feel like it. This is a day where my guts feel so bad that I'm afraid to go out in public where the humiliation of an accident would be much higher. I already have self-esteem issues related to these incidents when they happen at home; imagine what that would be like if it happened at a restaurant or in a club (that I didn't make it to the bathroom, not that I got sick or "poohed" - those do happen; I apologize and clean up after myself).

And when we're out and I run for the bathroom or outside it's because my body is sending subtle hints that if I don't I may get sick right there. That one is frustrating, but I've learned to live with it. I'll do just about anything to keep food in my body so if the smells are too much or I get badly nauseous I'll do whatever I need to not to puke.

Next: pain, heart rate, energy, memory, numbness, etc.

Once again, my scale has shifted, no doubt in part because of dealing with all the changes in the last year. I simply cannot do things I would normally do. Or instead of just getting tired I need a nap, more sleep, a day where I do nothing more strenuous than pull together a plate of food. This one is also difficult to predict, and thus far we haven't figured out how to fix it.

We've gone to and fro with adderall at various dosages; it seems to help me stay awake for more than 10 hours a day, and it does give me enough additional energy to allow me to workout or walk or dance a bit more. But it doesn't help the pain, and if I increase the dose to give me more energy today then I'm borrowing from tomorrow. It also elevates my base heart rate to the range of 85-90bpm (without it base = 70s). Since my blood pressure continues to be low (109/67 at last visit), and I have no signs of heart problems etc I stay on it. 1/4 dose most days in the morning; 1/2 dose if I plan something physical; and depending on energy and plans I can take a second 1/4 to 1/2 dose before going out at night - but I pay for that the next day.

The seizure (fortunately) has not recurred; the neurologist thinks it was related to the increase in Savella from 1/2, 1/2, 1 to 1, 1, 2. I'm back down to 1/2, 1/2, 1 - but that doesn't do nearly as much for the pain. Which means that I hurt more all the time; even with finally getting back on a regular exercise schedule of at least 3 full workouts/week I hurt too much. A good day seems to start at a 7-8 on my new scale:





And a 7-8 today is at least an 11 from when I lived in MD; chronic pain sucks. I also have nearly constant, bone deep numbness in my right leg from the hip down, and surface numbness from shoulders to hands and hips to toes (they call this neuropathy), which nothing seems to help.

Still, I'm getting better at coping with the numbness, the pain can be medicated (but I still have almost no real choices for pain relief, and I build up a tolerance if I take them daily), exercise helps a little with both the pain and my stamina. I'm still fighting with my doctors for a simple Toradol prescription (it's the only NSAID I've not been allergic to), and/or other options. The Tramadol has been removed from my choices due to the potential for seizures, so I'm back to narcotic A (minimal efficacy), B (makes me hallucinate), C (opiate nightmares and sometimes day-mares) or muscle relaxers (which work but make me sleepy and clumsier than I already am due to everything else).

I'm having ongoing issues with ringing ears (tinnitus) and scents still smell too strong. I have more frequent migraines, I'm dizzy and/or have vertigo all too often, vision is blurry and/or I get floaters and trails while I'm sitting still, and the memory loss (Transient Global Amnesia) continues. I keep asking for help with these, but no-one seems to be able to find out what the cause is, let alone a solution. The neurologist is adamant that the ringing ears and scent problems may seem to be tied to the Lyrica fail as that's when they first started, but he doesn't see any lasting damage from that, so I've cycled through all my meds (10 days off at a time except the T3; that one was 2 days off) and cut some out entirely to see if we can rule out anything. It's not that, it's not gluten/corn/soy/nut intolerance, it's not seafood or heavy metals, so basically no-one has been able to help.

I find that I cook or order a meal, but then I have no desire to eat it because it smells bad; I'm so dizzy some days I don't want to move off the couch unless T's here to keep me upright. And leaving the house alone is once again becoming less frequent - even if I don't forget where I'm going if I get dizzy/vertigo or the smells get overwhelming I need someone to help me. Ginger/Altoids/Oils only do so much to mask scents and calm my stomach; when things smell wrong I'm much more likely to vomit; and if the pain is bad enough or I have a migraine or a dizzy smell, keeping food down is sometimes impossible.

All of that said, in spite of the embarrassment and frustration and anger, I have no desire to give up. There are good things in my life: my family both blood and chosen; the weather in LA being better than DC; the fact that TGA is transient, and my brain still works albeit more slowly most days; I can still walk, workout, read, etc; it may hurt but I keep dancing.

I also have hope that one of my doctors will eventually figure out how to help me with the pain and the brain stuff. My coping needs shift (too much sometimes), so thankfully I seem to be fairly elastic. I just want some semblance of independence back; I still hate needing to be taken care of.

ETA: pain scale from http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html; not sure why the link in the body is failing.
Comments 
4/22/10 3:27 (UTC)
I really have nothing substantial to say (esp since we only just met in the cyber world) beyond I do understand a lot of what your experiencing and yes, it's frustrating beyond all hell. Pain and other stupid health crap can go fuck themselves. I'm grateful for the good days and hope they stay for a nice, long vacation.

But I will say I love your pain chart. It's perfect.
4/22/10 6:35 (UTC)
It's from http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html (which should be linked, but apparently that failed)
4/22/10 6:01 (UTC)
I want your pain scale.
4/22/10 6:35 (UTC)
It's from http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html (which should be linked, but apparently that failed).
(Deleted comment)
4/23/10 12:14 (UTC)
Letting someone know that their words are not going out into the void is a HUGE help. When you are managing a chronic condition (or in Alumiere's case, several) it feels like it's all you talk about..then you worry you bore your friends.

Even if all you can say is, "you are not alone", that's something. :)
4/23/10 12:17 (UTC)
I have wrestled w/ the annoyance of having to bail socially due to digestion/gut issues. It sucks.

Yeah, it's annoying to go from being a full-on functional person to having to check in w/ ppl & needing help. Tough transition. Allow me to make the token observation that it's good you have ppl to lean on, that you can count on, where you are.

The smell thing, that's a special hell. Sorry you have to grapple w/ so many bugaboos at once.