It’s been a while.
I don’t think I’ve written in a few months. And for that I’m sorry.
Yet I’m not.
The last three or four months have just been impossible to explain.
There really is no good reason. Sure I had the stress of dealing with the cookie sales for Daisy’s/Girl Scouts( I know it seems silly, but honestly it’s a pain in the ass and took up way too much of my time) yet the stress of some of it seemed to combine with some other small things going on to create a perfect storm with my health.
Last I wrote was not long after Christmas. I’m not even sure now what was said or written.
I just know I lost my passion for writing. For feeling.
Around that time I seemed to be dealing with more and more symptoms relating to my MS. Symptoms that made me feel like I was aging quicker then I should be. Many of them took the form of emotional which then transferred to physical, causing my body to want to shut down. I found myself wanting to do nothing but burrow under the covers and watch TV series on Netflix or On Demand while the kids were at school.
The effects of this were that I was continually fatigued and weak. I felt more ADD then I ever had before. I know I’ve always dealt with it since I was a kid, I was just never diagnosed. My mind goes from one thing to another in rapid speed. Sometimes I’m convinced it’s why I have such a curiosity about everything under the sun. And why I know a bit about everything but never more than that “bit”.
It was the beginning of March when I finally forced myself to the Neurologist’s office for the first time in two years. Even throughout all of my flares I never went in. If it were one thing I learned over the 20 something years I’ve had this illness it’s that going into the Dr’s office for every odd feeling meant a 50 dollar payment and the possibility of being put on a medication. So for those reasons I chose to deal with the symptoms & issues as they came along. Despite the worsening of the flares, and their frequency.
However the reason I went into the Neuro’s office was due to the fact that for weeks I had this continuing issue with my eyes. It kept feeling like the muscles were pulling down my eyelids. This could occur at most any time of the day no matter where I was. Most often it was when I was in the car. So many times within a couple of weeks I came close to getting hit when I couldn’t see the car coming from the right or left because of the direction my eye was pulling down. It was my wake up call, I couldn’t put these issues off any longer.
My mother took me & my youngest that day and she had yet to see the full scope of what was bothering me.
Then when we were sitting in the Doctor’s office I could feel the change in my eyes and told her to look, it was then she exclaimed with her hands flying to her mouth ” Oh my god, one eye is pulling down and the other is looking the other direction”. Yes. This was unusual and frightening.
I went in and talked to the Dr and she admitted that my attempt at the MRI months prior at least showed that my lesions had increased. She said that there wasn’t more to say then well yes, your MS is probably getting worse.
Now let me back up here. See, for years my symptoms and tests showed that it was there and it was perhaps progressing at a normal speed & perhaps I would never go much farther than it. In fact 2 years ago I sat in my doctor’s office and she tried to sell me on the medications once more only to tell me that really it’s been nearly 20 years so at the rate I’m going she didn’t think I would get much worse.
So imagine me sitting here laughing at this right now. This visit, this one I had March 1st, she sat there gravely after examining me, telling me that my physical state has shown a change(despite my flares & MRI’s my exams in the office were always shining). There was the distinct tremor in my left hand(it’s been there for a long time). My eyes weren’t focusing and following properly. My reflexes were “ok”. My walk was off. Ok. Words often escaped me. As a writer this a waking nightmare, but I’ve discovered that speaking is harder for me then actually writing. Though my ability to type has slowed down.
The words she spoke next were not surprising, and this time after all these years I knew she was right. I have to, no she said “you don’t understand, you HAVE to” go on the medications. I didn’t even blink. I agreed to it. We talked about a couple of the different drugs that are offered to those of us with MS. For so many years there were only three, the ” ABC” drugs. Now there are several more including one that was just approved nearly two weeks ago that is being called the “wonder drug”.
I left the doctor’s office not sure what to think. I relayed as much as possible in the car to my mother, even though my 6 yr old was sitting in the back seat. I went home and told my husband . I made a few phone calls not sure if I could accept what was being laid down in front of me.
It’s funny but I followed my general protocol which is to ignore anything even remotely disturbing regarding my health and continue on as if nothing was wrong. However I also sat on my computer for a few hours and researched some of the medications that she had brought up to me trying to decipher if any of them would be right for me. Later that night I broke down crying on the phone to my mother. She told me she was waiting for this call, she said that earlier I was taking it all too well.
I was hesitant with the Copaxone at first due to the fact that it was a daily shot, however the more I did the research on the oral drug Aubagio some of the side effects weren’t things that I wanted to ever encounter. One of them being hair thinning and loss. While yes that is the most shallow of reasons not to take a drug, if I’m to be left with any dignity whatsoever in my remaining years I would like to retain my hair for as long as possible. I’m sorry for that vain moment, but it’s mine.
The more I did the research the more I learned that out of the injectables the Copaxone had the least amount of side effects. And that eventually in my quizzing of other members of the MS groups online that I belonged to there seemed to be an agreement in this area. I called my doctor the following week and made a decision.
The copaxone is currently sitting in my refrigerator. I’m currently unable to schedule an appointment with the medical company to get them to send a nurse to come show me how to inject the medication and get this started. I know this sounds misguided and wrong but what it is is that it is the end of the year for my kids and there are many events coming up that would interrupt any time I would need to take off.
I don’t know how the side effects are going to hit me. I remember how they hit me when I was on the Avonex years ago, and that was enough to scare me off for years. In fact I swore that the medications did more harm than good. And to some regard I still stand by that, I think some cause side effects that end up being treated by other drugs which lead to complications.
I will start the medication probably the end of May. By that point my kids will be out of school and my mother has offered to help me out with them should there be an adjustment period.
So it comes down to this. Something I had hoped would never happen.
However I’m no longer scared. At least not like before. I’m no longer who I thought I was, I’m weakening. Something I prayed wouldn’t happen for years. But it’s happening now. There are days and weeks where getting up and functioning seem like something in the distant future.
Just this week the excessive rain brought me to a standstill. I went further into this depression I slip into when I don’ t feel myself. I’m angry and hurt. My life isn’t want I planned it to be. But I will tell everyone NOW, there is no internet link you can send me that will make me think that I can prevent this or heal myself. Thank you, but no your information is incorrect and unwanted. I will get past this it just takes time.
I’m going to try to write again. I’m going to try and keep this place up to what it should be. Well I should, I just paid for it to be renewed for a year.
Music has always been my love but I neglected it. Right now it’s saving me. Going back to what has always made me sing and dance, made me laugh and cry is driving me to go forward.
So soon, I’ll see you again, or talk to you again.