#msdiaries

I wanted our waitress to know that my request for a fork was not because of my cultural ignorance but a lack of dexterity, yet after my first bite I was reminded, again, of the danger in having too much pride.

There's so much on my mind today, I think mostly it all stems from "the telling". I never realized the hardest part of having an immune system gone amok would be in telling others whom I've only just begun to know that I have "it". I mean as much as I'd like to think it does not matter at all, there is absolutely no way to tell how one may react. I can totally be rejected because of something that is completely out of my control. It's sad and disheartening but I guess I better get used to it quick. If there's one thing that is going to happen out of this, this disease is going to toughen me up when it comes to relationships with others. I think that's a good thing as I've always been quite a sensitive girl when it comes to the heart. I am going to have to learn how not to care when I've been discarded, when others form opinions. THIS is a lesson. Because the truth is, though this is a part of what I am, it is far from defining who I am. You know, I guess I never even thought it would be a big deal at first, I never stopped to think that this made me damaged goods or any different from anyone else. It wasn't until the person I loved the most turned their back on me out of fear of what would happen that I began to feel unworthy.. like I was un-whole b/c I had MS. Even though I would like to think I made it through that, I guess I'm a bit gun shy now. I think...if this person couldn't stay beside me, will anyone?  I sat up last night for hours...Trying to look up MS... see if I could find someone like me who was blogging or something, but I found nothing... just older people who were far more debillitated and less hopeful. I guess I've just been really "in it" lately. Sometimes I'll be completely fine, and then I'll just think too much.. I'll start thinking of the future and whether or not I can succeed in this mind over matter bit... whether or not I'll just be a heap on the floor with all these holes in my brain, useless... I guess the fact of the matter is, that you should never underestimate the power of the human will and spirit... I think I can do what I want...make of it, what I choose.. which is good, because I really don't want to be a heap..Sometimes it just gets the best of me.. Sometimes, when i get to the telling, my palms get clammy, my stomach twirls and I worry that I'll suddenly look different in their eyes, I start to doubt my efforts... but I know, I know that someone WILL take it as a positive part of who I am, because the truth is, at the end of the day , It's made me better, wiser, stronger... and that is more than I could ever ask for.

A lot has been changing over the last week... Been here and there... to wind up right back where I started.. only for a day or two, Tomorrow I am off again, for some sort of freedom seeking, living.. like I've never known before.. everyday lately is living like i've never done before.. hard, detailed and unsure.  Life takes turns, I guess I've always known that.. but it just never turned so many times, so quickly before. My legs don't work much anymore, tomorrow will be my first testament to that.. I will sit myself in my first ever needed wheelchair and be rolled into different terminals making tranfers until I finally arrive home. I will be first to board and last to de-board, and people with look at me questioningly...at least I'll have moose dog riding on my lap. Head bobbing, tail tucked between his legs.  I feel as if I am walking on a permanent Jumpy Castle lately.. it just follows me around everywhere I go.. jumpy, lumpy.. Also, I've become left handed... my right hand doesn't so much like to work anymore... just stops doing what it's told sometimes. Anyway, that's enough for now.. time to try to eat something yummy.. but I promise to keep updating on this journey of mine... Love,  G

I wake up today to the sounds of wind chimes singing and moose dog chewing. I feel perfectly snug underneath all these white blankets that carried me off to sleep. The sun keeps coming in, making lines and shadows across my face and the walls, and the blankets.. I open up for once, with hope inside my clouded eye. I take a deep breath and ponder the question of where I went last night. When my mind shut down and all reason went out the door.. I remember for a second the shadow of me that existed in the darkness of the night.. I remember my legs dangling from the pier.. I remember feeling the cold shiver in my bones as the raindrops soaked my shirt. I remember feeling each drop on my back, in my hair.. and trying to decipher if the water across my face was a warm tear or a cold drop of rain. I wonder where I go when I've left myself.. I can feel remnants of the sadness I allowed myself to feel last night in the light of the morning.. but for now.. I'm back. Bad things go and good things come... a continuous rotation.  Here's the deal: Yesterday I had a 3 hour appointment with yet another neurologist (I'm up to 4 now). He told me that in his medical opinion.. upon examination, he would diagnose me with Multiple Sclerosis. I was looking for his opinion as my 2nd opinion.. and as it turns out, both doctors agree. He also told me that I have a vitamin b12 deficiency on top of this.. so my body is unable to hold onto b12 in the food I eat which is an essential nutrient for the nervous system. This being said... he believes that the treatment I underwent last week.. to hopefully regain feeling in my leg was obsolete because I did not have active levels of b12 in my body to allow the treatment to work and be absorbed in my immune system.. So.. he ran some tests and thinks that I have undergone substantial nerve damage in my leg and may indeed never regain the feeling I long to have in it. Sad news... however.. I now have a new symptom.. which maybe I created by being quite unhappy the last few days...this new symtom is called optic neuritis.. I guess the nerves in my right eye have become inflamed causing this awful pain in my eyes.. as well as really blurred vision. He says to be prepared to completely lose my vision in this eye.. (which is now happening) ... and it putting me on treatment again to help me eye. So now, in conclusion to yesterdays visit. I have to inject myself once a week with a vitamin b12 shot..I also have to have an IV injection everyday again for 5 days of solu-medrol as well as inject myself once a week with another drug called avonex. Which is for the MS. Hopefully I get good at these injections.. but.. if there's anyone of you out there who wants to volunteer to help a sister out. I would much appreciate it. So.. onto brighter days... today I am going to smile AND go have accupuncture. Wahoooo.. Loves...