MS Frustrations – 03.21.09
It was only a matter of time apparently before Dr.Crawford would be
influenced by others at the hospital in this ridiculous idea that I should only be allowed pain relief for certain amounts of time and then it’s just too bad so sad, deal with it. Or at lest that is the only thing I can imagine has changed since the few short weeks ago when he seemed to understand my right to some quality of life and the right to live with a level of pain which didn’t have me confined to my bed wishing away my limbs.
I feel like screaming and am not crazy about thought of getting back into doctors appointments that have no purpose other than me trying to argue my right to some semblance of a life. To describe it as ‘quality of life’ or a fight for at this point is almost laughable (still better of course than what alot of people struggle with in terms of health challenges but really, there are also children starving all over the world. Does that mean that if someone with the means to feed their kids were to give them one peice of bread a day with the logic that many children are worse off that it would be ok?) I have lowered the bar so many times regarding what I expect to call the situation I’m in ‘living’ I don’t know that I am willing to sink any lower.
Through the course of the past 2 years I have gone from being an active woman & Mother who enjoyed playing outside with my children EVERY day (regardless of weather); like to take my kids out of town, even if just to swim in Marathon, once a month or once every 2 months; enjoyed my work as a freelance photojournalist having my photography and articles featured in national & international motorsport mags and covering rides/fam tours for these at least once every two months; enjoyed being around other adults to socialize wether it was going out with Lloyd’s Dad a couple times a month or participating in events around town (planning of or attending) to this lonely, discouraging place where I am now where I can barely manage to write a couple articles for the Chronicle in a month, Lloyd mostly makes sure his sister gets out to play because I can’t do it more than once every couple of days and even then just to go to the school playground down the street – none of the exploring I loved to do with her in trails and stuff before, I can’t go for walks (I’ve made it downtown with Emeraude twice in the past 5 months); I had at one point decided that scrapbooking on my own was more realistic for a hobby that anything out of the house but now I haven’t even been able to scrapbook since before Christmas because I just don’t ever have enough energy after taking care of necessities like meals/cleaning (and Lloyd helps alot with those too); I am not willing to lower my quality of life and more than it has been and hope that this will not become the main focus of my healthcare (just arguing for the pain meds to allow me what is left of my life) no one should have to fight for the right to live and enjoy life.
Now we haven’t even skiied in almost a month (hopefully I will find a way to do so today at least for a couple runs with Emeraude). There is a project I would like to be in charge of for the EDC with atving this spring or summer but I cannot at this time even think of that as I could not realistically commit myself in any useful way. I want to homeschool Emeraude, circumstance unfortunately made these plans with Lloyd have to change and he attended traditional elementary schools and I WILL NOT let my health or some doctors issues with what type of meds I need prevent me from enjoying my daughter’s childhood and giving her what I believe to be the best elementary education she could have.
Just to put things in perspective (sorry if I have not really explained what the problem is today but I get tired of the details of my own complaints so cannot imagine anyone else would care to read them) the issue today is that my dilaudid injections need to be increased and the doctor apparently gave the message when I asked for this at my emerg visit this morning that I’m “taking too much” ????? Too much for what? I am not getting pain relief of any kind so that means I am not taking enough. This problem that doctors around here (judging from what I find on the internet it seems to be an Ontario thing or smaller centre thing because American hospitals and bigger city clinics do not seem to have the paranoia that I am confronted with CONSTANTLY around here regarding opiods. I had seen a doctor once in Nipigon, ON who was an older gentleman (he was the one who advised me I should be getting these injections subcutaneously and ever since I request them that way) who told me that it was indeed unique to ‘around here’ that opioids not be seen as the tool they are in pain management (been used for centuries and so are quite safe in the way of side effects and knowing what to expect and be careful of)… ANYWAYS, to put it in perspective, I am now receiving 6mg of dilaudid subcutaneously (which I wanted to try increasing in 2mg increments, probably 8mg would have been sufficient judging from past increases) now other people with chronic pain are given doses of HUNDREDS OF MG of dilaudid subcutaneously and by other administrations (click here and scroll to the bottom of the page for an example) so clearly this ridiculous idea that recieving SIX MG is somehow too much and I should just be left in pain is absolutely mundane.
The following links argue one type of administration of dilaudid or morphine vs another (NOT WETHER OR NOT TO USE THEM) which is part of my frustration. Why am I having to argue that I be treated for this excrutiating never stopping pain when instead it would seem my doctor should be arguing how best to administer it for optimal pain management?????
http://jnci.oxfordjournals.org/cgi/content/abstract/80/14/1152
This excerpt from Elsevier article locator (click if you want to see where it came from, its at the bottom of the page in small print) is another example (in more lamen terms that we non-medical types can understand) of my frustration that we are having the WRONG ARGUMENT… it is primarily talking about cancer pain but should that mean that because my pain is from MS (or according to the belief of my dr. possibly MS + some yet-undiagnosed secondary problem) I should be expected to just accept it and lay in a bed for the rest of my life????? read on please and give me your two cents:
Abstract
While morphine is historically the gold standard for the management of severe cancer pain, some patients either do not achieve adequate analgesia, or suffer intolerable side effects from this drug. For these patients, alternatives such as hydromorphone are recommended. This review explores the evidence for the efficacy of hydromorphone in the management of pain. A systematic search, from 1966 to 2000, of published and unpublished randomized trials that involved the administration of hydromorphone for both acute and chronic pain conditions in adults and children, was conducted. Forty-three studies were included in the review; 11 involved chronic cancer pain and 32 acute pain. Approximately half the studies received a low quality score. In addition, the heterogeneity of the studies precluded combination of data and results. Overall, hydromorphone appears to be a potent analgesic. The limited number of studies available suggests that there is little difference between hydromorphone and other opioids in terms of analgesic efficacy, adverse effect profile and patient preference. However, most studies involved small numbers of patients and wide ranges in equianalgesic dose ratios, making it difficult to determine real differences between interventions.
