Multiple Sclerosis Update
It’s been a long time since I posted an update on the status of my health; in part not wanting to speak to soon in regards to changes, in part because I’ve been so overwhelmed with work. I changed doctors this summer, that was a huge blessing; I had prayed and prayed for God to send me a compassionate doctor that would understand my need to have my life be about something other than dealing with MS and also be respectful of my right to quality of life. Well, that’s exactly what I got and it meant that the kids and I were able to do the camping we’d be waiting for, we travelled and I got back to working full time which was a huge relief as funds had been running very low.
Last spring I had hoped to start accupuncture; unfortunately my doctor at the time did not facilitate my being able to travel and with the accupuncturist being an hour and a half away (in Marathon) it never worked out. I was devestated, I had looked forward to beginning for months and with nothing else working I really felt my last best hope had been snatched away. Meanwhile, the doctor continued to expect me to get better but yet there was no treatment. I was being threatned that my pain meds would be discontinued; to say it was stressful is an understatement. It was incredibly frustrating for the kids as well who could not have any kind of normal life while I was going to the Emergency every 4 hrs (stuck there for a minimum of 30 minutes, most often closer to 90); Lloyd was often late for school and sports and most teachers/coaches did not understand.
Fast forward September 2009… I am now with a doctor who is as committed as I am to find options for treatment that will improve my situation. Reduce fatigue, decrease pain to a manageable level, explore my symptoms more in depth. I finally went to my 1st accupuncture appointment. There was no change but the idea of being proactive with my own health care and doing something to try and get healthy was incredibly encouraging.
Week 3 of my accupuncture (once/week) I started feeling like I was improving. I was taking pain meds less regularly and finding it occasionally took less to help manage my pain. Unfortunately my old van had some issues and I missed the next 3 consecutive weeks in spite of great efforts to get there (one of the missed visits I had managed to arrange transportation with someone working in Marathon but then Lloyd became very sick with the H1N1 Flu and Emeraude had woken up feverish that day and looked like she might have caught it from her brother so I decided not to travel).
That brings me to today, I have seen, since missing those 3 weeks just how much the accupuncture was helping. It was a big set-back to be back at square one as I thought I would be almost done with the heavy pain meds at this point and I just hope the doctors can understand. Next week I see the pain specialist in Thunder Bay and we had hoped that by then I’d be at a different place in regards to my health but things happen. I am hopeful that by Christmas I will be in much better health (though the accupuncturist advised me last week that she is closed for 2 weeks at Christmas which was incredibly discourageing). It will be the first Christmas in 3 years that I wouldn’t be going to the hospital or receiving treatment (well not steroids or IVIg anyways).
It has been suggested that I may have fibromyalgia though I am skeptical about that I have alot of respect for my family Doc and so am looking into options for dealing with that (see last paragraph about training w/Lloyd). I have dealt with a neurologist who was making statements in regards to my status with MS without any examination, without knowing any of the symptoms I suffer with and when I had a telehealth appointment with him I came away frustrated as he did alot of talking without being willing to hear anything (something he is well known for among MS patients).
Manitouwadge Fitness Club
This week I am back on track with the accupuncture so I hope to be getting back in control of my pain and fatigue once again… Lloyd and I are planning to begin training at the weight room also (Manitouwadge has an incredible Fitness facility in the lower level of the Recreation Centre. 
As Emeraude’s father continues to be unemployed (I don’t forsee this changing unless the EI Benefits end every hour of the day at which she call’s he’s slepping and he has moved 1/2 his house to his father’s place in the Sault apparently wanting to live with them and go to school there. I pointed out the obvious, that Thunder Bay has both a college and University and Emeraude actually travels there but his priority is living with his parents, not living where access for Emeraude is facilitated) I will be advising him that she needs care in the a.m. so that Lloyd and I can go weekday mornings before school :). Fibromyalgia patients apparently benefit significantly from regular exercise so if I do in fact have that in addition to MS, weight training could be of significant benefit (aside from the obvious regular benefits of regular exercise).
More on all of this later, I just received a phone call from the pain specialist’s office about cancelling my appointment next week to have it the day before; though the Doc himself had asked me to tell the receptionist I needed to speak with him personally if this happened she was incredibly rude and put me on hold when I was trying to explain this to her. I cannot afford to stay an extra day in Thunder Bay unless the Northern Travel Grant can be adjusted to reflect the extra hotel night so we will see what comes of that.
Lloyd took this photo of me once the accupuncturist had put in the pins.
