Tuesday, March 4, 2008

Happy Anniversary

Happy Anniversary to me,
I would rather have been bitten by a plague infested fleeeeea.
I walk like the earth's crooked,
And some days I can't see!

Today is my 3 year anniversary of being diagnosed. I hate when people say they got it on X date, because I can trace mine back to my early 20's knowing what I know now. So I always say I was diagnosed on this day.

Three years ago today I was happily oblivious to any festering problems with my immune system--in fact I had never had any real problems. I remember having my left thigh go numb once or twice in the past, and I didn't know why I had to nap every day when I never had that problem before. I just chalked it up to laziness and the foster care we were doing at the time; I figured it wore me out so much I was more tired than usual. Then came an icy late February day when I got a call from the school that one of my foster girls had wet herself and needed a change of pants and undies. On my way out I slipped on the ice on the front steps and fell all the way down, bruising my ribs and hip. About 2 weeks later I noticed my left leg is numb and I am having terrible double vision--so much so that I had to close one eye to drive. I wasn't going to go to the doctors because I thought it was just a pinched nerve and no big deal. My husband told me to just go because we had already met our deductible and I never go to the doctor when I should. I tried to see the P.A. but when I told them what the problem was they put me in with a doctor. I had a CT scan and the doctor called to tell me that I didn't have a stroke and I don't have a tumor. That was when I realized that something was really wrong. When they told me they suspected MS I wasn't sure exactly what MS was. After I did some research I decided that I did not want it. But of course the ensuing MRI and spinal tap were against me, and silly thing that I was, I thought it was an option whether or not you became disabled. I thought if I got enough exercise, ate right and took the DMDs I could stave off any problems. All I have to say to that is a humorless ha ha and ha. Being the huge genetic loser that I am, I also got a very aggressive disease--my neurologist told me (after I started Tysabri and it was working for me) that I probably would have entered a progressive phase within 2-3 years--that made my blood run cold. I have been on Avonex, Novantrone, Copaxone and now Tysabri. I did the steroids 4 times in about 10 months gained over 50 lbs (and was still not considered overweight. I was very thin when I was diagnosed.). I have come a very long way, even though it may not seem like it. I no longer want to off myself, but have let everyone close to me know that if I ever reach a point that I can no longer care for myself, all agreements about not committing suicide become null and void. The funny thing is I forget what is "normal" for a person of my age. They can stay out till all hours? Not need naps? Walk the entire zoo and not be wiped out the next day? Go jogging, which I miss more than anything. It seems wild and crazy to me. But I also think that it is good that I am adjusting to my own "normal," because thinking about all the things I can't do could get very depressing. On the plus side, I can read all day now, my house is kept clean, I enjoy the cool weather--when everyone else is freezing it feels refreshing to me, I go to bed early so I always get to see the sunrise (my favorite time of the day. I love being the only one up to enjoy the morning all to myself and prepare for the day), and last but not least, I am always here for the little girl I am raising--no babysitters, healthy meals, someone always around to make sure everything goes smoothly and to listen to all she has to say, which is a LOT!

7 comments:

BRAINCHEESE said...

Quite the story! And one told and heard in so many versions so often...it's a bitch to be unique in a not so unique world, I say. LOL

I'm totally with you on the "offing you" side of that coin...just hope my friends show the passion and humanity they do their little animals when they take them in to "put them down". I, too, have lived a wonderful and exciting life and I'm free to go at anytime. Which probably means I'll be CURSED to live to 100! LMAO

What's happening out there on the plains of Nebraska? Or should I be wearing my Cornhusker sweatshirt before writing that?!?!

Linda D. in Seattle

SwampAngel65 said...

Hi! I've been diagnosed with MS also, and was searching around, looking for other bloggers with this stupid disease and I found you!

You have been through alot since your diagnosis! I was diagnosed in 2006, with no episodes since then. I've been on Copaxone since day 1 and feel fine...hiking, kayaking, doing whatever I want. I know one day I won't be able to do those things, so I try to cram as much in as I can!

I'm sure I'll be popping back in regularly.

TickledPink said...

What a story! And what an interesting blog! I'm going to hang around and read for a while.

I came here because of this project on Brass and Ivory:

http://brassandivory.blogspot.com/2008/03/ms-awareness-blogging-friends-and.html

We'd love to have you join in!

Nice to meet you, BTW...my name is Jeri. :-)

LISA EMRICH said...

Hi,

I have an MS Blogger Project underway over at my place. Please visit MS Awareness, Blogging Friends, and a little Link Love to join in.

Thanks,
Lisa

wonlife said...

amazing how all of us with this same basic disease can have such different stories. thanks for sharing yours.

BRAINCHEESE said...

Hey,

In the spirit of hard-working Nebraskans, I've presented you with a little sumpin sumpin blogging award on CHEESE...NO, it is NOT your typical feel good award...personally, I think you'll like it!

Linda D. in Seattle

Keli said...

Your story sounds very similar to mine. Your humor and your emotion comes thru in your writing. I too have a blog, and I will be checking yours out often. I don't know if having MS makes us all kindred spirits, but I have learned there are some pretty nice people out there with this not-so-nice illness!
Keli D. in Victor, NY