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Hospital....Home Again

I just got home yesterday from Seattle. I have been in the hospital for more than 2 weeks and was more than ready to come home, so I thought. I am still really having a hard time and I don't know what the heck is going on. I don't know if I am going to recover this time as this is probably the worst relapse I have ever had. Just over 2 weeks ago I was fine and now I'm not. My parents thought I was having a stroke I was so bad. When I went into the local hospital here I was fine. It turned out I had Meningitis but I was okay. A few days later my MS flared and I was not okay. They did a MRI on the 19th that was okay. It showed the lesions that were previously seen on my MRI's that were my MS. A few days later my MS flared and it attacked deep in my brain causing me to not be able to talk, walk, or handle my emotions. I am still having a hard time in all of these areas but my talking is MUCH better than it was. I am basically back to normal in that area. I am having to use a walker to walk, which that would be okay if I could just get out and do stuff. Being stuck in the house, not feeling good....that is what sucks!

They did another MRI once I had other symptoms....the stroke like symptoms and it showed the inflammation deep in my brain and the new lesions. It looked like MS but the local hospital's Neurologist and Radiologist could not agree so off to Seattle they sent me. They wanted me to see my doctor's, not only because they specialize in MS but because that is where I had my transplant and they were not sure if that was something to do with this. Fortunately it looks like MS and they started me on steroids which as much as I hate the side effects when it comes to MS they work! I started to get better and each day I slowly get more and more back to where I was. I can't do a lot because I am tired all the time but I am getting around okay with my walker.

I find with this relapse I am mad though. I have always had a good outlook on what was going on, always had the outlook of "it could always be worse". This time I don't feel that way, maybe because of where in my brain it hit, but I am mad and I really hate feeling that way. I see people who are able to walk, talk, do things "normal" and it ticks me off. I just want that again. Thing is I think I would be okay with the walker if I could just have enough energy to go drive, do things like I used to. People come to visit me and it makes me happy to see people but at the same time so mad that I am going through this. And then I think that I am being selfish which makes me even more sad. I need to get better and SOON! The doctor's expect a full recovery and really think that this is all caused by the Meningitis, so I hope they are right but right now it doesn't seem like that. I am not sure they really know what to expect because all of this is new to them. They tell me that the Meningitis is caused because my immune system is lowered and that it allowed the MS to flare. They don't think the MS would have flared like it did had I not gotten the Meningitis but I don't think they really know. Maybe, but it doesn't seem like it.

My son asked me why I even bothered coming home if I was not back to my old self. I didn't know how to answer him because I am not sure I will ever be back to my old self. He hates seeing me like this and doesn't even want to be here. The doctor's did a bone marrow biopsy on me and they tell me everything looks good. They expect a full recovery and maybe I should just listen to them and be patient, I've just never had it this bad. My Grandma has been in the hospital and got discharged yesterday as well. She is 83 and had to have her second leg amputated. She is no longer gonna be able to live with my parents as they have been her caregivers up to now and she is handling all this much better than I am. I want to go and see her and can't right now. My parents are having to do everything. Work, take care of my Grandma, take care of me....Justin is having to do everything for me. This whole thing really sucks! I'm sorry that I am not being positive like I normally am, I am just so unsure of everything and for me that is new. Maybe I will be lucky and in a week or two I will be back to my old self and if I take it easy everything will be okay. I can hope, right?


Madame Hallie said...

Dear Jaime,
I am so sad to hear that your time in the hospital and what put you there has been so bad. We will put you in our prayers and keep thinking positive thoughts for you. We wish you all the best. All our love. US

Kim said...

Good to see you updating Jamie. And it's great to see your honesty. I can kinda relate as lately I've been having a lot of different feelings about my MS too... maybe time just needs to change it and the old attitude about it all will come back. Glad to hear your doctors believe you will recover fully! Thats a great sign!

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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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