March is MS awareness month!!!
It also marks a year that I've been with my "new" doctors. While I'm not where near 100%, I am much better than I was last year at this time and I have hope that by this time next year I will be even better. It's hard to believe that it's been four years since my first relapse. Sometimes I wonder where I'd be today if I had been diagnosed then rather than three years later. But, I know that playing the "what if" game never gets me anywhere.
Earlier this week I went to the hematologist (I was supposed to go in September but had to cancel), but she wasn't able to give me too many answers since the blood work was done earlier the same day. Iron and vitamin b 12 take a few days to come back. She was able to tell me that my platelets were good and that the red blood cells were a good size, which is good. When the red blood cells are smaller than they are supposed to be it indicates that there is a lack of iron. I've been trying to get more iron in my diet so I don't have to go through another iron transfusion.
Tuesday morning I will be heading back to the neurologist for a check up. Hopefully this visit is less eventful than the last visit. I did get results from my EEG and they came back normal! That was the biggest relief I could have asked for, but I still have to be cautious with medicines I take. The ultram is the pain medicine that was most likely to cause seizures, but there are a list of other medications I need to steer clear of to avoid another seizure. I also had an MRI and those results were stable, which means that the Copaxone is helping which is also promising! Since Copaxone is the mildest disease modifying drug, the longer it helps the better off I am long term. The other drugs used to treat MS can be harmful on the liver and other organs.
My last doctor appointment this month is with my pain doctor in a little over a week. During my next visit, fingers crossed, I'm supposed to get Botox to help with the back pain. I really hope it works because I am beyond frustrated with the pain. I've been on a variety of different regimens and none of truly helped me feel pain free. To be honest I can probably count on my hands the number of days I've been pain free (or in minimal pain) in the past four years. Sadly, two of the times that I was actually pain free it was from lidocaine used to numb my back before my epidural and lumbar puncture. The main problem is that it wears of fairly quickly and isn't a long-term answer.
When I switched medications in December the doctor said he had other treatments we could try if this didn't work. Hopefully we can talk about some of these when I go next time. I have not been able to live my life to the fullest because of the pain. When I do get bouts of time that are limited in pain I do as much as I possibly can, but then I always regret it later when the pain is intensified. I'm ready to get a job and live a "normal" life, but when I think of teaching/working I get overwhelmed.
During student teaching I was constantly in pain and always tired, I look back wondering how I was able to manage it. There was a drive in me, like I knew I had to push through it to get to graduation, but when I sub or look at jobs online I know that if I were to start working now it would not end well. I am trying to avoid a situation where I get a job and then have to take sick days because of the pain and fatigue. I don't want to put myself in a situation where I am taking off so much that the school thinks I am not serious or something like that. Even though I am still not in a position where I'm comfortable getting a job, I know I can't hold it off for too much longer.
That's pretty much everything that's been going on lately. I am super excited for the walk coming up, this year our team is bigger and we've raised close to $5,000. We still need about $400 but I have faith we can do it!!! Plus, the support I've received from friends and family is overwhelming and reminds me that I'm not alone in my fight. Also, MS is such an unpredictable disease and raising money is something I can control. By raising money now, it helps fund research and the society uses some of the money to help people living with MS. Since I am able to raise money now I feel like I owe it to others with MS who need assistance, plus one day I may need help from the MS society.
