They sky seems to be falling in on me... I just need to vent.

Discussion in 'Fibromyalgia Main Forum' started by luvnewcomb, Dec 1, 2006.

  1. luvnewcomb

    luvnewcomb New Member

    I'm sorry to complain, but I just need to...

    A few weeks ago some of you may remember myt post on going to the ER and being treated like a non-being as soon as they heard I have FM. I'd been sick for weeks and my doctor insisted I go to ER due to a 10 day fever, vomiting, chills, side pain, etc.

    Turns out I need to get my gall bladder out and go to the surgeon on Monday - my PC called yesterday to tell me I NEEDED to go to surgeon ASAP and he wanted me there monday to get the gall bladder out SOON.

    Just prior to being called, I'd been to the Neuro-opthamologist for eye problems I'd been having for a while now. I figured, as usual it's my FM. I have a lot of neurological problems due to my FM, balance, numbness, etc.

    Turns out I have macular degeneration and will slowly go blind. The dr told me I was young to have it, put me on vitamins to try to slow the progression, is scheduling me for an MRI and I go back first week of January.

    I'm sorry but I'm really feeling sorry for myself today. Surgery just prior to Christmas (I think it's to be the regular surgery, not laproscopic) - I'm just completely wiped out and hurt all the time from my FM, and the gall bladder pain, nausea, etc. and from the week I should have been in hospital (dr yelled at me and told me I could have died - I thought I had the flu...) and now I'm being told I will slowly (thank goodness slowly, but still :( go blind. Not totally - I guess I'll have some side vision - but, I just can't believe this all hitting at once.

    I miss working - had to go out on disability 2 years ago due to tremors, pain, exhaustion, balance problems (the FM) have been seeing neuro's who go back and forth from PD, to MS, back to FM - you all know the drill.

    How do I now handle slowly going blind?

    Please give me some uplifting advise if you can find it in your heart. Also - it's bad enough at the holidays with my feeling awful. Now I'll be recuperating from surgery.

    Normally, I'm not a baby - but, this is really too much.

    Thank you very much for listening -
    L

  2. NyroFan

    NyroFan New Member

    luvnewcomb:

    All will be OK. Just do not worry. Take it one day at a time and just do what you can on those days.

    Do not be afraid. I had my gallbladder out and my sister came up to help me out for a week or so.

    Really--it is routine and do not panic about it:just my suggestion.

    You sound very strong and have a good head on your shoulders. You will pull through this.

    Afterwards: rest, rest, rest, rest.

    We are all rooting for you!!!

    nyrofan
  3. luvnewcomb

    luvnewcomb New Member

    My head is swimming... but, my first thought/plan of action is to learn brail. I most likely won't lose my sight completely (although, I've heard some do, and the majority lose the ability to drive, read, and can barely recognize people). I figure if I learn brail even way prior to losing my sight, and it takes a while to lose it I'll be as ready as possible.

    I also without thinking counted the stairs as I went up them last night, and am really looking at things and trying to imagine what it'll be like. I plan to learn my house inside and out so I can get around easily - but... I'm still so scared.

    As a little kid and into adulthood I've always been afraid of complete darkness - I need a night light on and at least a tiny bit of light. To me the scariest thing is to be in total darkness. I don't think that'll happen to me with this disease, but I will need to prepare myself.

    If anyone here has any experience with the disease, please share.

    I'm just so overwhelmed with the diagnosis, while feeling so bad flare-wise, and now will need to undergo surgery for gall bladder in the next week or so. They plan to do it really soon.

    Thanks to all how post.

    L
  4. nightngale

    nightngale New Member

    You poor dear,

    My grandma has that, I thought they had made great stride in treating it? She is 97! She used to crochet beautiful blankets, I know she is not in complete darkness. May I ask what were your symptoms? My eyes have been feeling weird and it just started this year. I need to go to the Dr. again. I pray you do not get too bad, try to hang on.

    Laila
  5. balletdancer74

    balletdancer74 New Member

    Your post really hit me. I wish I had advice for you about the macular degeneration. I know you're MUCH younger than my grandmother, but she's had it for years. Hopefully, it really WILL be a slow process, and you'll be well into your years, but I think learning your house in and out and making it "child proof" if you know what I mean as well as learning brail, etc. is a good idea.

    Regarding the gall bladder, as you have been told by others here, it's a routine procedure. My Mum had her gall bladder and spleen taken out way back in the 70s when I was a baby. They didn't have the technology than like they do now...i.e. cosmetic surgery. You're going to feel SO much better...

    Just make sure they use the right type of anasthesia, and why can't it be laproscopic? Ask your doc again.

    Breathe, distract yourself with things you love like maybe reading, watching movies, listening to music, etc. I find music very therapeutic.

    My thoughts and prayers are truly with you....and you're not complaining...believe me! I'd be scared too, but you sound very strong and in control...

    This board is here for love and support...not just advice on treatment...

    Healing hugs and I wish you a "refuah shelema" which in Hebrew means a full and speedy recovery...

    At least you won't feel nauseous and with fevers and pain during the holidays from the gall bladder...that's the flip side. :)

    LB32 (Leeza)
  6. getfitat40

    getfitat40 New Member

    First of all I just wanted to say how sorry I am for everything you are going through. It is a lot to deal with and it sounds like you have had a lot of good advice here.

    I am wondering if you got a second opinion on the diagnosis on the macular degeneration - MD. I only ask because of my boss' experience. I sent him to my opthomologist who thought he had MD but sent him to a specialist. He did not have MD but instead had some blood behind his cornea (there is a specific name for it but I cannot remember the name). He had to have laser surgery to repair it and has to see the specialist 4 times a year to make sure he is all right.

    I have a lot of vision problems (severe muscle imbalances) and I have been seeing my opthomoligist for years so when sent him to see someone else we knew something was up.

    That's just my 2 cents...take care and I send you prayers for strength and blessings.
  7. kbak

    kbak Member

    Hi,
    Life can be just so overwelming at times. Your not being a baby. Lordy, if anything, your a women fully of courage. You have to be just to be able to put one foot in front of the other and keeping going.

    Your a complete inspiration! You could just be giving up, but your not. Take it just a step at a time. Call coalition for the blind (I think that's what it's called) They should be able to help with your impending sight problem's.

    I do believe that Mac degeneration can be slowed way down. I'll have to do some research on that. There's lots of service agancies out there. United Way should have a reference book on all the service organizations in your area.

    I'm praying for you!! Hang in there. You are precious and your life is precious.

    kbak
  8. luvnewcomb

    luvnewcomb New Member

    To everyone who replied, sent kind words of support, and for those who sent links to help me research MD more.

    Thank you so very much... I'm still feeling a bit stunned and overwhelmed, and just a bit depressed these last few days - but, you all are helping me to put it in perspective and move forward.

    It just seems if it's not one thing, it's another - I'm worried about the gall bladder surgery, but what kicked me in the gut was while dealing with the FM, etc. - now the GB, and to top it all off the thought of the MD and slowly going blind - or mostly blind.

    I'm just going to absorb all I can now, look at things and people for their beauty while I can, learn brail, etc., and be the best that I can be, that having FM/CFS, the neuro problems, and any other health stuff that pops up, along with the macular degeneration. I will get a second opinion, but who I saw was one of the best Neuro op's in the Albany area.

    Just thank you all so very much and I know you'll be there for me in the future as you are presently and have been in the past for me.

    Thank you very much - I'll try to be as strong as possible.

    L
  9. saltb

    saltb New Member

    L

    First,please forgive my spelling,is it bad. Second,this is my frist time to every reply on any king of message board.

    Having said that,let me tell you about my MD. I was diag.with MD when I was 47,today it my 57th birthday.
    I have wet MD.There are no treatments for dry MD,but it takes longer to lose you sight with dry. When my vessels start leaking,I have a treatment--it involves injections,using a cold lazer and a shot in the eyeball. I have to stay out of sun for 5 days. The treatments slow down the progressing of MD. I have very little direct vison in my right eye and 10 years later it is starting to move into my left eye. It is a very slow process and most of the time does not speed up. I hope this helps you.

    I all so have FM,was diag. 4 months ago,am having a very,very hard time dealing with it. My Dr. told me yesterday they did not seem to be able to control my pain. He wants me to go to a pain institute. They give physical therapy,water therapy,cousling and learning to deal with FM. sorry this is so long,not sure if I am messaging correctly.

    If anyone has gone through somekind of therapy for FM,please let me know how it was for you. If anyone has any advice on Messaging I would apprecate it that as well. Does messaging have spell check?

    Saltb




    [This Message was Edited on 12/02/2006]
  10. Toga

    Toga Member

    I had the same thing happen to me several years ago. I was told that I had MD but the guy was at least smart enough to send me to a specialist.

    I ended up with laser surgery that corrected the situation and the only macular degeneration I had was a tiny dot not inappropriate for my age.

    But get that gall bladder taken care of first.

    Toga