another day
Not even sure where to start. There were wonderful moments today, as in any day (well, any day when you are lucky enough to have healthy children) and for those I am grateful. I live in a safe place. I have a home. I have plenty of food. I am blessed.
My steroids have not worked. I can type it, but am not as yet able to say it out loud, hoping still against logic that I might wake up in the morning to realize they are finally taking effect. It is difficult enough to try and wrap my head around the idea that this is somehow the norm I am going to be dealing with again… for how long? but add to that the constant need to argue for pain meds just so I can have some reasonable level of pain to deal with. Should my doctors not be the ones convincing me “it’s ok, the dilaudidwon’t be forever, we’ll figure out why the oral meds don’t work or find something better or we’ll find another treatment that will help…” I know, that this should be the case, I see it in MS mags, online, on television every day, stories of people just like me but with one small difference, their doctors believe they are in pain, believe they should be fighting to live all the life they can. “it isn’t ideal to have you coming in to the emerg every 4 hours, we’d like to have something you could manage with away from the hospital”
THANK YOU CAPTAIN OBVIOUS!
Unfortunately, I know that isn’t the case. I have been dealing with this stupid pain that comes whenever which ever treatment (mostly the steroids but for a time IVIg worked, seems like ages ago but only one family doc ago, between 12 & 24 months I guess) I have keeping symptoms more at bay runs its course, this excruciating, dibilatating pain in my bones like I have rods being shoved up my legs, arms, my hands and feet being a pile of broken bones that if I could somehow keep in one piece I would get some break from it… I know that there are answers to me having more freedom, not being trapped in town, not even able to go to the camp with the kids (not ONCE all winter) because I need to be able to get to the hospital so many times a day (when ever I want to do more than just lie in bed bearing myself). I get dilaudid injections subcutaneously, there are pumps that are put in to people so that they can do this themselves, obviously giving them some freedom from hospitals. WHY DID I HAVE TO FIND THIS OUT MYSELF???? (just like the port-a-cath that I needed to find and argue for, shouldn’t the doctor have suggested that as one little thing that would make my life just a little simpler?) AND WHY now that I know about it, is no one suggesting it? Encouraging me to get it or even discussing the possibility????? I AM SO FED UP with the battles being about the wrong enemy. MS is my enemy, not the pain meds that can help me go to the park with Emeraude, or volunteer for a lunch at Lloyd’s school or stand and cook supper when it’s time, or even go downstairs to do some darned laundry rather than having Lloyd be stuck with it (I want to argue with my teen about normal things, there is too much on his young shoulders and it’s catching up to him). THE PAIN is catching up with me and I’m getting sick and tired of begging for a right to some life, fed up with being in pain. When (not if, because that is the point of opioids, they have no ceiling so can be increased as you build tolerance and your body will respond and still have some relief from pain, I have already seen enough times that there is no problem when I am well stopping these stupid injections ) the dose doesn’t work anymore, INCREASE IT, I AM NOT A GUINEA PIG, WHY ARE YOU LEAVING ME IN PAIN?
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so…having ranted all that earlier, I still am not feeling much different (more fed up with the pain, less patient with the details). Emeraude and I watched part of Nim’s Island tonight. She fell asleep in my arms quite early on in the movie. Dad gave me a ride to the hospital as soon as it was alright (4 hrs to wait between at least) to do so which was after 19 by the time we got there. I had not felt any let-up from the pain most of the day as the last two injections I received had no effect, and I could see what was left of my day fading away, disappearing into another emerg room visit. I was quite certain there was no standing order (another thing that can in a little way allow me to keep just a bit more of my own life as it saves at least 30 minutes on an ER visit, plus the unneeded stress of not knowing what will happen when I get there – stress does not agree with me and if I wasn’t already unwell, knowing there was the possibility of argument with either nurse* or doctor on the horizon would certainly have me well on my way to some level of symptoms arising) – anyways, when it ended, the dilaudid was not increased in spite of my verbalizing that the past two injections had not been sufficient, I was advised to take more hydromorphone (I am always worried about what will happen someday when I am taking larger & larger doses of oral meds which are being blocked somehow in my body, well what will happen if at some point I have a ‘good day’ or moment and all of a sudden these drugs take effect??? especially with the slow release ones oral or patches, that cannot be undone once take if they were to start working at the levels that I keep being told to take them? just another worry I don’t have answers to, the doctors don’t seem concerned so I can only guess that there is no medical basis for my worries but then again they don’t acknowledge the fact that I am NOT the only person with MS dealing with injections being the only answer and oral meds not having any efficacy) although it IS SLOW RELEASE so I am certain the doc had no disillusions of this giving me any relief whatsoever any time soon, had the dilaudid been increased to 6 mg (keep in mind people recieve dosages of literally hundreds of mg of this drug subcutaneously for chronic pain, I hoped for just enough to minimize the pain, I don’t expect for the pain to be taken away) there is no way to know if it would have been sufficient to help but at least there would have been the effort to help reduce my pain, the impression that it matters whether or not I am sent home on my way to being in better shape than I rolled into the er in (shouldn’t that be the result of visiting an emergency room?). I didn’t have any fight left in me though and so said thank you to the nurse and let Dad wheel me off (I did not walk in as I could not bear weight on my legs at all, this was the case for most of the day and the last few days have been the same, the later it gets, the more tired, physically and mentally I become and less able to bear the pain, wishing so desperately for something to back it off just a bit. It was 20h30 when I returned home, no hope of watching a ‘Friday night movie’ with Emeraude, at least not any length of it. As if our day hadn’t had enough pieces stolen, it could not even end in one piece.
Lloyd had helped her get into her nightie and they were getting popcorn ready which was neat (and sweet). He took off to a friends shortly after, he’s supposed to be grounded but I thought had earned some time to just be around normal people, hang out with his friends… Now my girl is sleeping, I wonder if I will sleep tonight without a standing order or even the chance of an injection that would help reduce the pain is there any point to the $$ I would spend taking a taxi?
The hydromorphone also feels like it’s hard on my stomach. Every time I take it I feel somewhat nauseous, like I’ve just drank rotten milk.
Prednisone to take as well. A taper off from the solumedrol. I am not at all regretful with the chance I take using the steroids when they work, when they don’t however like this time or at new years I wonder, what risk have I taken for naught? How will my body be effected down the road for the chance at a few weeks of health, obviously I would probably not be so desperate if any doc was willing to treat my pain without it being necessary for me to gamble my bones and organs 15-20 years from now (or sooner for my bones most likely).
