Two years and two months

    • Anonymous
      March 23, 2010 at 11:53 am

      Well this has been a wild ride. As with anything, the unknown is many times the worst part. I had hoped that after two years I would be getting back to normal. Not the case. Although my eyes are normal and I can move my tongue. My lips, chin, fingers and shoulders (ball area) are still numb and sore and my throat is inflammed. Speech is difficult and slurred. I do not have recurrent MF which is good to know, but the past month has been a roller coaster. Nausua comes and goes, head ache and stiffness persist. Not alot of energy. Sleep is good some days and other days (last nite) I tossed and turned. Kinda feel like a truck hit me today. Aleve has helped a bit, I don’t really like living on the stuff, but then maybe I need to get over it. I take Prozac and it does help. To top it off it appears I have a residual shingles episode in my side. Doc says that I may have these symptoms on and off forever.

      Good news is that I am retired cuz I don’t know how I would work with this. I get bummed out when I think that this could be my future. Kinda hoped that when I retired I could enjoy life, but I guess I must remember, there is always someone that has it worse.

      One other thought relating to Long Term Disability. I have been told that I have to be symptom free for two or three years depending… Well, I can manage quite well, but I wonder if 20 years from now there could be further issues or this will just be a painful memory. In other words, I am now thinking that it would be good to get LTCare Insurance to cover my butt, however I worry about the unknown and potentially being refused again.

      Well, I am a bit bummed today, but know it could be worse. Anyone else going down the path that I am on?:(

    • Anonymous
      March 25, 2010 at 10:07 am

      I am sorry you are on such a bumpy road. Almost everyone here on these forums has their own bumpy road to ride, too, so we can “share the pain”.
      My own experience has been like a roller-coaster of good & bad times. I am just coming back from a really bad time & trying to get back to the land of the living.
      I guess the idea of the LT insurance is probably not a bad thing for anybody tod o. I have been having long discussions with my kids about how I want them to handle my care, it necessary.
      I hope that posting and reading the ideas others offer you on all the forums helps with the bad days you have been having.

    • Anonymous
      March 25, 2010 at 5:02 pm

      Hey Mick56,

      I’m sorry to hear you’re bummed out. I don’t know much about MF, but as you stated, it’s not recurrent so that sounds like a good thing!! I wish I could impart useful information, but I’m pretty much clueless when it comes to pain relief. 😮 Have the doctors tested you for other ailments, such as allergies which could be relatively simple to fix, or are the symptoms you’re experiencing specifically related to MF?

      I try to take each day as they come; some are pretty good, others, not so much. Unfortunately, none of us know what the future holds, regardless of our medical condition.

      I just wanted you to know that you’re not alone with thoughts of the future and the pain/issues you’re dealing with on a daily basis. 🙂

      Take care and stay encouraged,


    • Anonymous
      May 19, 2010 at 11:46 pm

      Hi, Mick56,

      I contracted MF ten years ago in March of 2000. A very wild ride for me, mostly affected my eyes and vestibular system. Although the initial onset symptoms backed off, I still ended up with permanant double vision (which I later had surgery for @ the Doheney Eye Institute at USC), and continual balance/inner ear/vertigo issues over the years, along with persistent fatigue. This, in fact, ended up taking me out of the elementary classroom, where I had taught for 27 years.

      It appears as though much of what you describe could indeed be MF residual. These things bothered me for quite some time, but after a spell I found my brain accepted it all (Grace here), and I now consider “doable” just fine. You’re right about others having it worse, but that thought pattern doesn’t always stick. I’ve got some books I’ve read over the years that have really helped me mentally, please ask if interested.

      Your call on the LT insurance is a wise one. My wife and I both purchased this a while back, and I’m glad I did. I can roll with a lot of stuff, but don’t want my kids/wife to have to endure financial duress should one or more of these residuals get the best of me.

      I’m thinking back, two and a half years after my onset, I was still in the middle of my career change, proceeding into disability (State Teachers’), and grieving over the loss of a lifelong work I loved. Very fresh for me, even then.

      Hang in there, Mick, let us know how it’s going.

    • Anonymous
      May 26, 2010 at 4:48 pm

      [B][/B][COLOR=”Green”][/COLOR] you can read my story @ [url][/url] left side column down story page#2 known as survivor48!:)