Sunday, January 24, 2016

Finding fine

A friend of mine came up to me after church today and asked if I was still writing my blog.  She told me how much it has helped her understand what her sister was going through.  Her sister was diagnosed with MS a few years ago and lived in California. That was the straw that broke the camel's back for me.  I have been thinking again and again lately how I should write another blog post soon, but I just couldn't bring myself to do it.  The whole process actually takes a lot. First of all,  it takes time.   Time that I can sit quietly at my computer and concentrate.  I have VERY little of that. In my 2 1/2 hours of being child free each school day I am just scrambling to get the necessities done.  When the kids are here, having any time I can actually use my computer (never mind undisturbed) is extremely rare.  Secondly, writing a blog post takes a lot of thought.  It isn't that I am incapable of thought...  I sometimes just don't like it.  In order to write from my heart I have to face reality and really really think about how I am feeling and what I am going through.  Lately, well, I haven't wanted to face it never mind REALLY think about it.
I so much wish I could infuse myself back into what life was like in my first blog: http://mybeautifullifewithms.blogspot.com/2013/05/1-dont-judge-book-by-its-cover.html .  Or even one of those other times in this process that I was oh so motivated or positive.... but I can't.
Maybe the stress of my daughter's surgery finally got to me.  Maybe I had another relapse or got another lesion or something.  I don't know.  However, before Christmas was a very bad time.  Every day I was on the brink of  picking up the phone and calling my neurologist or just heading to Yale.  However, there was NO WAY I was going to be in the hospital for Christmas.  My husband tried to convince me that if I went they would just figure it out and send me home.  I have no idea where he has been for the past few years.  Maybe he blocked it out.  "BULLSHIT THEY WILL SEND ME HOME".  So, I just didn't go.  I had muscle aches so bad that I had to plan my days according to the levels of the house I had to be on because it was so painful and tiring to go up the stairs that I couldn't do it more than once a day.  I did what had to be dome in the house and with the kids but nothing more and I didn't leave the house for over a week.  I made it through Christmas and New Years but couldn't handle it much longer than that.  So, I broke down and made my round of doctor calls followed by lab tests.  Fairly quickly they determined I had Lyme Disease.....again. I've had it approximately 8  times in my life (comes with the territory when you have horses I guess), The doctor put me on a month of antibiotics and I guess I began to feel better.  I am still not sure if it was the antibiotics or just time that helped.  As with every up there comes a down.  Come to find out, I was unable to get my 4-week infusion while on antibiotics so  I had to delay the procedure.  When I spoke to my neurologist she informed me that SOME doctors actually extend the Tysabri treatments to every 6 weeks after a patient has been on it for a few years.  She then added.....  but I wouldn't do that with YOU.   UGHHH....  
I keep flashing back to the onset of all this. How quickly it hit.  How devastating it was.  How much I lost along the path to final diagnosis.  I flash back to being in an unfamiliar hospital, in a different state, without my kids for the first time.  Alone.  I got the official diagnosis and called Al to come to the hospital and it was just forever and ever that I lay there alone thinking about how permanent this was (is). I have become accustomed to planning for the future, for the things I won't be able to do.  These thoughts have become routine and normal.  The past month or two, though, it hasn't been easy.  It has been more REAL than it has been previously and I DONT LIKE IT.  I have been stumbling through life lately....literally.  I even have been leaving Crane behind on some trips out because I seem to get so much friction from some people about her.  So, instead, I deal with things like pain down my spine or in my knees for days after I misstep because she isn't there to guide me.  It seems that nobody is there to support her presence with me anymore.  Maybe it is because I appear fine to some people, even my family.  Maybe it is because of this rash of news and occurrences of false service dogs.  I don't know but I DON'T LIKE THAT EITHER.
So, I finish my antibiotics for Lyme next week and have my 4 week Tysabri infusion and 6 month Neurologist appointment scheduled for the next day.  I foresee my doctor putting me through the gamut of tests and questions.  I see her staring at me and asking how I am doing.  I want to, and probably will, tell her (as I do everyone else) that I am fine.  I don't want to tell her that I don't sleep due to muscle spasms, that the meds for muscle cramps and pain don't do shit, that I am tired from the second I wake up in the morning.  I don't want to tell her that I don't want to go out because I am always exhausted and uncomfortable, that the cold hurts, that I am worried the muscles on the right side of my face are wasting because I don't use them because I can't chew on that side, that I get such bad aches in my muscles and joints that I almost can't tolerate it. I don't expect great or even normal.  I will never have that.  I just want to tell her that I am fine.

After all, I will be..... eventually...even if not forever......

I just....have to...get to....fine ...again...