Sunday, January 31, 2010

Fear of the Unknown

The last few days have been more difficult then I had ever anticipated. I guess I had this misconception of "treatment means recovery". You would assume that with everything else I've dealt with that I would know the cold hard Truth. Treatment doesn't mean recovery and I'm NOT invincible! Hard words to swallow and except, but true. I might not get better, I might get's ok to not be ok! Unfortunately I have found no relief from my relapse as of yet and sadly I have gotten worse with each waking day.
With the 3 days of IV steroids, 2 days of oral, and I started another Medicine to help with my nerve endings (Neurontin) I continue to have this headache for 10 days now, I have wibble wobbly legs that feel like they are going to give out at any moment, my arms are weak, and my body just aches. BUT I will remain positive that this is running it's course and one day I will wake up regaining some of my functions back instead of losing. This is so unbelievable that I'm finding it hard to wrap my brain around what has all happened ....and in such a short amount of time. Like I don't know how fast things can change, BUT it's not suppose to happen to ME, RIGHT? I'm suppose to be the strong, protective, and nurturing one instead of being the one that is dragging behind.
I've been exceptionally spoiled by having Dr Kasper in our lives for Danny as the "regular" doctor/patient relationship I forgot that exists out there, sucks. So I'm finding my patients running very thin with my Neurologist. Call me crazy for wanting just a phone call back (when I called at 8am to let them know I wasn't doing well) to see what I could be doing. So here I wait over the weekend wondering what I should be doing and getting pissier! The office did call into the pharmacy for two prescriptions .... one that I can't even take as I get sick from it and the other I'm not really sure what it's suppose to do, as again I got no phone call or direction, UGH! I can't wait for Monday's phone call to the doctors office, :) I won't stop here and just wait around so I'm going to start looking elsewhere for a doctor that I feel is hearing and treating my concerns.
I was able to get out for lunch with my girlfriend on Friday. I was so nice to get out and be "normal" for awhile, talk to another adult (one that gets it), and just shoot the breeze. I'm so glad I did as honestly I don't think I could do that today, I've gotten so .... NOT ME!
By Saturday I was very weak, but I signed Avrianna and myself up to go to a 2k walk/run fundraiser for her school. I went but thankfully was able to just sit and watch the kids run around the track, phew! As it took everything for me to walk in to the field house :( Another big one to swallow, sitting on the side lines, isn't something I like to do! Thankfully we had nothing planned for the rest of the day and we sat around the house watching some movies :) Then in the evening Dan and I had some friends over to give me some tips on changing over to a better diet. Guess it's time to step up and take care of myself? It was great bouncing ideas off of her and getting some of her wonderful recipes was a great start. She has fibromylacia (which has some of the symptoms as MS). So with both feet in I am changing to a healthier diet. With the way I'm feeling I'll give almost anything a try. I'm anxiously awaiting some MS books that I purchased online that will hopefully give me alil more direction.
Danny has been doing great! He's been such a good, healthy boy lately (knock on wood)! It's as if he knows somethings up with me, weird? But I'll take it. He's happy and healthy so I'm all game for that. We've gotten Danny on the schedule for his back surgery in May. With talking to his Doctors and some other parents I feel the surgery would benefit him greatly, but I still have a few loose ends that I need to wrap up so I have all the info I need. To make things even more exciting, I've changed Danny's nursing so this last week it's been alil different around here, but I think it's all changes for the better :) Danny and I need more consistancy and dependablity so I'm hoping that we'll have everyone on board, trained, and comfortable before May 14th.
Avrianna has been awesome also! She's been selling Girl Scout Cookies. She has already met and surpassed her personal goal.....YOU GO GIRL! This is her first year and she's loving it. We just got report cards for her and she's AMAZING. She's doing excellent in everything ~ I'm so proud of her! Avrianna has another swim meet this next weekend in Clintonville, where the coaches have her entered in 6 meets. GO AVRIANNA GO!

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