Read if you want to, comment if you want to

.....Just to let you know, nothing in this journal's entry is toward anyone in specific, I use it to write my feelings, and about my illnesess, and in hopes it might help someone else as I do.I do not pretend nor imatate to be someone I'm not. And if you might take an entry wrong and feel that it is about you, I'm sorry but It isn't, it just may seem to coincide with your own life. And if there is something in what I write that "offends" you, options; don't read, or realize that this IS real life, and get out of your plastic bubble and learn more about it! God bless you!......

 

 

Good morning. I do hope that everyone is doing great.

I do want to clear something up. The little tests that I had to do yesterday at the "specialists," were NOT the only tests that I've been through to be tested for ms! I will do my best to remember the names of all the tests that I have had. MRI's, labs, full body scans, spinal taps, EMG's, CAT scans, Evoke's for eyes, another Evoke test that I can't remember what was called to test how fast my brain excepted the nerve pulses that was shooting through my feet and ankles. There are so many more and I have had what I have listed more then once. It was the EMG and the Evoke tests that confirmed it along with an MRI. The reason that I was sent to that "specialist" was to be put on medicine for the progressive ms! But instead, I was put through what I had posted last night! Yes....I've also been through those as well....but not to be PUT ON MEDICINES!!! And just because I was able to do those...does not mean I'm NOT in need for medicine for the ms!!!!!!!! Am I wrong?! You tell me!!!! Because if it is, and if this is how 'they' decide if you need medicine or not...PLEASE LET ME KNOW!!!!! I honestly don't think things have changed that much!!!

My husband and I talked about this last night. No, he's NOT at all very happy either! He said that I should just go ahead and call my neurologist and tell him that I want to be a guinea pig and just try different types of ms medicines! I am going to do that! I really like him and I think that he will go for it since he is the one that diagnosed me. My husband was so upset as well yesterday, because he knows what I go through day in and day out and see's what abilities that I'm losing! He and my mom tried to talk to the "specialist" and she just seemed to already have her mind made up. I have a cd with some of my MRI's on it and took it with me so she could look at it for herself! Her responce after viewing it was, "You don't have any MRI's on here that are from this year!" Well....then why didn't she order me an updated one????? The only other time that I had the opportunity to meet and talk to someone this stupid, arogant and didn't seem to have the patients best interest at heart was my old neurologist!!! He was the one that kept telling me that the things I was experiancing were IN MY HEAD!!!!! NO they weren't!!! I changed to the neurologist that I have now and is a very caring doctor. Fibromyalgia does not progress like this or make you lose the abilities that I have lost!!!!!
I was suppose to go to the adult day care center today, but I called to let them know I really was not up to it today and will just go next Wednesday. She understood. Everyone that is now helping me, like Rose at the center and the nurses that come here and my case manager ALL know whats going on with me. They all knew that I had that appointment yesterday, and Rose understood why I wasn't up to going today. I like that. The one nurse is also appualed at how I was treated yesterday!!!!

This weekend, my husband is putting in the sink in my bedroom for me. I can't wait. That will help me out sooo much! He knows how hard it is for me to have to use stairs, and I have to go up stairs to brush my teeth and bath. He's doing his best to help me as much as he can. He also knows that my legs don't 'work' like they used to! Which he wittnesses that everyday! He see's how upset I get. Just like this weekend! He, my mom and my best friend seen how upset I was at my daughter's reception. Yes...it was beautiful and I did have a blast just like I said. But....like I've wrote before, the stepmother seemed to use the use of her legs to hurt me! I wasn't the only one that saw this! And her and that day is a whole other story!!!!!!!!!!

My husband just called me to see how I am doing. God bless him! He wanted to also see if I was going to go to the day care center, but I told him that I had already called Rose to let her know I wasn't going to go today and he said he thought that would be a good idea. Today I realy don't feel up to meeting new people! He was glad because he thinks I just need to do nothing but rest today. I agree! Because  of how pissed off I am...I've been in so much pain! More muscle cramps...yay...just what I LIVE for!!!!!!!! NOT!
For once, it would be so nice to know more information on progressive multiple sclerosis! I'd love to have support for that! I already do for the fibromyalgia! It would be nice if someone out there could help me with learning more about ms. Oh...I know, thats right, I'm suppose to just ask my doctor?! Will it would be nice if someone could let me know now, instead of playing the WAITING GAME Like I have all summer just to get in to see the 'specialist!' No more! NO MORE waiting!!!! I'm so sick and so tired of this waiting crap!!!! Where is it getting me???? I want to know!!!!!!!

Thanks if you leave a comment and if you don't...oh well! Just have a nice day!!!

 

 

 

Tags: MS, Fibromyalgia, Tests, Life, My suckie life!!!