Clearly I’ve fallen behind and practically given up on my documentation of my daily/weekly pain and symptoms. That really is no shocker. I really wish I had the motivation to do it, both because I think its a unique way to connect with others that may not realize that a lot of us go through a vast majority of symptoms and painful areas even in just one day or short time span (and that it can change quite a bit day to day where hurts and what’s going on) but because its a great way for me to keep track simply for my own medical recall if I need it.
Its definitely something that I aim to get back into sometime in the future, especially if symptoms go back to ranging more from day to day, but for now this is the way it stays. I wish I could say the reason for my lack of mentioning all the health related stuff more is because I’m feeling better overall…but that would be a bit flat lie. I can say for certain that the fact that I’ve focused more on just life in general as a de-stressing journal tool in order to just spend some time not completely taken over by how shitty my medical situation has become for the most part.
I say for the most part because yes, while a lot of things have worsened I do have some good news and a few areas do seem to be doing better (any improvement is a fucking blessing at the moment). More on that later, I say we should finish up with the good news and end with some sort of attempt at a positive spin.
For ‘first is the worst’ place of what we’re dealing with right now we have sort of a tie in terms of difficulty to deal with on a day to day basis, but I know my doctors would tell you that the still mystery gut issue is definitely the front runner. My second colonoscopy/endoscopy/biopsy date has still not been set and it is now out of my hands as it is my GP and his staff that are handling figuring that out. Until that is done though I’m shit out of luck in terms of starting any sort of treatment plan since we’d be still only guessing at what all is causing all the mystery symptoms.
My blood work is all over the map and unfortunately because of the lupus ( and/or mixed connective disease, or whatever you, different specialists or whomever decide to specifically label the mix of different results) so determining inflammation and it’s cause from anything other than an internal look around is next to impossible. The only thing we know is that the symptoms have slowly (but more rapidly than before) gotten worse and that the beginner ‘IBS’ treatments that used to help even if only a little bit, do nothing to help now.
I live off a diet of mainly pureed soups, meal replacement liquids, jello, gummy candy, coffee and wine. If I eat anything that isn’t made of sugar or suitable for a straw it comes out the other end just the way it goes in (use your imagination here…I don’t want to get too graphic). The only exception to this rule is breads and pastas…I can digest them BUT IT KILLS. Usually once a week when I feel I just can’t handle my liquids and sweets anymore I’ll risk it and have something chewy and wonderful like a soft pretzel or bowl of buttered penne…. and it’s hell to pay afterwards, for days. Solids tend to also make the bleeding worse, which I’m assuming isn’t cool.
Like I said I know very little about what’s going on medically and I don’t feel confident even taking an educated guess. There are so many variables going on and the doctors being so hush hush about it doesn’t help. Either they’re clueless too and just don’t want to let on, or it’s bad and they don’t want to say anything until they have a plan of action.
MY plan of action is generally to just leave my digestive tract the hell alone for a while at a time. If all I put in it is black coffee and a fuck ton of water, it barely let’s me know it’s there after a day or so, so that’s been how I get shit done. I stock up on nutrients and ‘food’ for a couple days and feel like shit (and I shit and shit and shit and shit) and then I fast and my body recovers enough I can kind of feebly function without much cramping, bleeding or excessive trips to the bathroom.
While this plan of attack may work well for my innards…. I don’t think the rest of me is appreciating it much. In terms of tied for first and the worst thing to be stuck dealing with daily on the home front is the fucking pain (no shit….I know). The lupus arthritis pain I can deal with, it sucks, but I can deal with it. The lupus/vasculitis nerve pain I can deal with it, it sucks, but I can deal with it. The progression of this hand pain that’s gone on….I’m not dealing so well.
It definitely has nothing to do with my nerve pain, even though that has been heightened due to impending shark week, it seems more similar to swelling like the arthritic pain. That is maybe if an arthritic inflamed joint was also broken and being gnawed on by a pack of jackals. The biggest difference is the sensitivity to pressure. Like a break, twist or dislocated joint certain pressure can temporarily relieve the pain and others can send me screaming.
My rheumatologist actually seemed to have a gleam in her eye as we talked about it and as she felt around the certain spots in my wrist and hand. I guess unlike my GI guy, she likes a mystery, my lupus had become boring so a mix of mixed connective tissue talk and now a bunch of new in depth blood panels. I guess this is all a good thing, she really wants to get to the bottom of it. I just feel like every time I see her I leave with more questions than answers…
I’m sure to most people it sounds like even moderate to severe hand pain pales in comparison to not being able to eat and shitting out blood…but on a day to day basis as a pretty active mom and home maker it is drastically effecting my ability to function. I can barely cook (and making pureed soups is actually pretty labor intensive), forget cleaning and with Little Dude running around with me, that means 2 people pants to pull up and down and button. The medications that seem to have the other pains relatively well managed also do little to help.
While those are the big two complications right now, there still is a lot of other side symptoms hanging around. There’s no way I can get to them all and this is already going to be a tediously long post, but I’ll mention a couple….just…cause I can.
I’ve taken to fainting randomly. You’d think it would be on the days that I eat nothing, but no it happens frequently during the times when I try to eat more. We (the GP and I) assume it may be more due to spikes in blood sugar along with the possibility of more intestinal bleeding on those days. I’m supposed to keep him in the know so if it keeps happening I can be admitted…Lets pretend I’m doing that.
My Raynauds phenomenon is out of control. I know I’ve complained about our freakishly warm November and that I want some fucking snow so I can feel like the holidays are upon us but really…. I’m already wearing my -30 gloves all the time everywhere. The numb pain when they’re cold isn’t so bad, but the half hour of reheating nerve pain and tingling afterwards every time is utter nonsense and happens at the oddest times.
My ‘other’ pain in general has been very all over the place. Daily it’s anyone’s guess where the problem areas will be and if it will be joint, nerve or muscle that takes the cake. My body is no longer playing favorites and leaving my left side alone as much, though my right shoulder and right SI area still are two major culprits and I’m still really trying to keep up with my physio when I feel able (though a lot of it requires the use of my hands and wrist…see above issues about hands…). The medications work better on the arthritic pain than they do the muscle or nerve but all of it is better controlled now than a couple months ago…so that’s something.
Insomnia. It’s kind of a duh, eh? Extra pain, extra stress, extra anxiety. Yea, I’m not sleeping, not hardly at all. My energy levels are tanked and I feel like a slug all day but when it comes to night time (or if I try to nap) there’s no way in hell my brain wants to shut off and let me get some shut eye. Which…makes the pain worse, makes the stress worse and makes the anxiety worse. I do have the option to up my sleeping meds and I think I’m going to take it.
Speaking of anxiety…all things considered it probably could be worse with how much extra is going on in life. Being able to still get out for short periods outdoors with Little Dude during the day is sure helping the general anxiety and I don’t know if it’s an act of the Goddess or some miracle but my panic disorder is actually staying relatively mild (considering shark week as well, where it usually gets worse). I don’t want to jinx anything and I’m not naive enough to think I’ve managed to fix it, but hey if it’s gonna be milder than usual, I’LL TAKE IT!
Since that’s kind of a positive spin, lets get to the other couple things that health wise have also managed to turn out relatively decent lately.
The evil Topamax seems to actually be doing its job. GP wants to up the dose still to see if it will help more with the nerve pain (which means another 3 weeks of hellish symptoms) but so far even at the lower dosage now, I do believe it is working it’s magic for migraine prevention. I have had only ONE migraine since starting it, granted it was a 4 day fucking doozy but I can’t even recall the last time I’ve had that long in between migraines. The best part is knowing that I had a couple triggers start ‘pre-migraine’ nonsense and for the symptoms to just disappear. I know I had my reservations and I still think that it’s a messed up medication but man oh man would I not be able to handle weekly or more 2-3 day migraines right now. This is a huge plus.
Between the TENS machine and the hot tub there is some relief. It may not last long afterwards and clearly you can’t combined the two but it definitely is something. I do have to write a review on the TENS machine we purchased in more detail because I definitely believe it deserves it. My SI area and one worse shoulder definitely benefit from it a lot and I love that it’s so small and easy to bring around anywhere from a walk with the kids, to taking on a road trip into the city (making an uncomfortable car ride a lot more bearable). The tub is like a big warm hug for all my joints and muscles. Mr. Mango and I joke about finding one of those infant neck floaties so I can just go limp and bop around in there, hell maybe even fall asleep.
With how much crap is going on and how a lot of it just seems to be getting worse and worse it’s hard to stay positive and it’s hard to even stay focused. There’s just so much to deal with, where the fuck do we start. Just live you may have noticed, I haven’t been focusing on it as much on my blog, I’ve also taken a little hiatus away from the doctors. Apart from if needing to head to the ER, I have no scheduled appointment for almost 3 weeks in a row. They’ll call me if results come in and I NEED to get my ass there and yea I’ll haul myself in if there is an emergency, apart from that, I need the fucking break.
So there you have it. My mish-mosh of an update and piss poor explanation for why I haven’t been talking about all my medical shit all that much. Congratulations if you made it all the way through, you’re a trooper! Now I’m off to grab another mug o joe, giant cup of water and apparently to bring Little Dude to the pooper…