Living with MS – 05.18.09
I am pretty much in the same shape these days as I have been all year other than 3 good weeks in March when the IV Steroids I received successfully reduced my symptoms (fatigue, pain, weakness in legs, etc). I go to the hospital for dilaudid injections to make the bone/muscle pain (neuropathic pain) I have reduced to a level I can deal with (mostly to bring the pain in my legs and feet to a level at which I am comfortable standing & walking although the same pain is also in my arms/hands it is less disruptive in regards to day-to-day life and playing with the kids).
I have tried many other pain medications; a variety of oral opioids both immediate & slow release, patches (Fentanyl which you may have seen in american commercials regarding a class action suit for people whose loved ones died while on the patch!) but they only seem effective when the IV steroid treatments (or way back when IVIg was helpful) are successful, which I also refer to as ‘when I am well’. This had been a matter of contention with many doctors, I was led to believe that I was the only person ever to experience such a thing (that injections were more effective than oral meds) but found many references on line to studies being done researching that occurence in others as well as references in the New England Journal of Medicine to people, more specifically people with multiple sclerosis dealing with neuropathic pain, having no pain management from oral opioids which was frustrating but also a big relief!
My current family doctor seems to understand the level of pain I am dealing with and although he is not a fan of people with non-malignant pain using these drugs for pain management, he acknowledges that I have yet to find any other option and so continues to prescribe the injections so that I have some life left and am able at least to play with my children and maintain my home (with alot of help from my 14 yr old son, Lloyd and cooperation/understanding from my 3yr old daughter, Emeraude).
Last week, I had to argue for 2 hours before the range of my dose would be increased to from 4-6mg to 4-8mg (subcutaneous) in spite of the fact that there was no argument regarding the fact that I had become tolerant to the lower dose (this was established over many days of inadequate pain relief). This is very frustrating and thankfully I had an advocate with me, Vickie, who started driving me to my injections about a month ago (often 3 or 4 times a day, to give me a break from the cost of taxis) and had even accompanied the kids & I to Thunder Bay the week prior, driving so that I could attend an appointment with a rheumatologist that I would not have bothered with if I had not worried of the consequences of missing the appointment. My doctor felt it was very important although I insisted that any joint problems I have had are from multiple sclerosis, this was confirmed by the rheumatologist. Also, I had already been seen at one point by another rheumatologist. Having said all that I do respect that he wants to be thourough in investigating any other possible causes for some of the symptoms I am dealing with; I just feel this could have been accomplished by telehealth and saved me a lot of money, energy, and time.
THERE IS HOPE however… This week I will be seeing Jennifer Bott, a registered massage therapist in Marathon who is also liscenced to preform accupuncture (it is the latter for which I am seeing her). From everything I have read, people with MS have very good results from acupuncture seeing all types of symptoms reduced to levels that they can live with. I am also making an appointment this week (thanks to my family doctor for ok’ing it) to have a B12 injection which I am hoping will help with fatigue which causes a great deal of stress as it infringes severely on my quality of life. I am dissapointed that once again it was ME who suggested the B12 injection AND the acupuncture rather than any doctor… It often seems that doctors are quick to critisize my insistence on needing to live and receiving opioid injections for pain or IV Steroids for reduction of all symptoms (as NOTHING else has proved effective) but yet have nothing to offer in the way of alternate treatments or medications. Not only do have I never received any suggestions, it is often like pulling teeth to get the suggestions I do make put into place. For example, I will be receiving the B12 injection at our clinic, by a nurse BUT I have read over and over again of patients injecting themselves with B12 so why was that not suggested to me??? As if I don’t spend enough time at medical appointments alread with my visits to the er for pain meds… Which again, I had asked about a pump that delivers dilaudid (the drug I receive) subcutaneously which would free me from being stuck at the hospital AND stuck in town, unable to go to camp, go to any events that I used to write about (so making work almost impossible) and I was told “I don’t know why they don’t have those (the subcutaneous pump) in Canada”… I took the doctor’s word for it that this must be accurate, just to learn when at the Emergency in Nipigon two weeks ago (the trip to see the rheumatologist in tbay) that people in Canada DO have subcutaneous pumps and NOT only for cancer treatment but also post-op!!!
So, as usual, prayers are welcome, thanks to those generous people who have taken time out of their own schedules to drive me to the hospital, saving me at least $10/ride (if I’m ony charged for a stop, it’s $16 if the taxi leaves and charges me for a ride in each direction… something that unfortunately happened more times than it needed to this week) from the taxi. Thanks also to our new nurses (well a couple are new, one from Thunder Bay is not so new and I have to admit to being relieved when I saw she was working the other day, having missed how efficient she is) who are working here to fill in for the shortage of local nurses we have. Thanks to our ‘old’ (not referring to anyone’s age but rather how long they’ve worked here) nurses also, I really lucked out today spending only 40 minutes at the hospital TOTAL thanks to a very fast ‘out of town’ nurse this early a.m. and one of my absolute favorite ‘local’ nurses the rest of the day… Now if only they (and the out of towner on yesterday’s day shift as well) could work all the time! I’d never loose a cab again lol (and it was not because the emerg was empty, it was not, they are just super-efficient!)
I have a doctor’s appointment Tuesday that I am hoping to re-schedule… My doctor had actually offered to do so last week and I declined but I have since come to realize I would much rather attend with my patient advocate, Vickie, along and she is not currently, in town. Fingers crossed please that he will understand and not take it personally or be offended (it has less to do with him and more to do with me wanting Vickie kept up-to-date as she has been incredibly supportive & helpful and has had no issue speaking for me when necessary (it is unbelievable to finally having someone by my side after 3 years of fighting mostly on my own! I thank God for having sent her every day!)
Have a good (short) week everybody! Check out the menu bar in the header (above) – I’ve added a new page “Manitouwadge Community Garden” that you won’t want to miss!!!
