Orachel

Discussion in 'Fibromyalgia Main Forum' started by lovethesun, Oct 5, 2005.

  1. lovethesun

    lovethesun New Member

    I was reading your answer to the post on pain.It's a shame that you had to get this so young.I too just try to concentrate on keepimg myself mentally positive.I was reading your post about liking alternative music.My stepson is in the band 311.Do you listen to them?
  2. orachel

    orachel New Member

    You all must be so incredibly proud. They've just taken off!

    As for my pain post, that is not my normal kind of post at all. I'm typically mrs positive, at least here. I figure you've got to "fake it till you make it" in terms of positive attitude.

    I've just had an absolutley wretched day, so don't mind me. Seriously, one of the worst in my life. I just found out that my care provider for FM/CFS whose last communication with me was to send me to the ER because he was concerned that my neurological symptoms were mini-strokes has apparently just informed UNUM Provident (officially the most diabolical evil Disability insurance provider in the universe...who I've been fighting with nonstop for 4 months to begin my short term disability payments! LOL) that I was cleared to go back to my very fast paced, very physical, very analytical job for 4 hours a day. I'm lucky if I can sit upright for 4 hours a day, and my doctor knows that.

    I'm just kinda at the end of my rope right now, so that post came out much snider and nastier than I usually am!

    I'm so sorry to bum you out or worry you! I know its nuts that I seemed perfectly healthy, fit, and raring to go 4 months ago, and now can barely dress myself and clean myself on a daily basis. It's totally unexpected and unfair and frustrating. But there are people here who have been struggling with this for upwards of 40 years, with literally no understanding or compassion from anyone in the medical community. Then there's a girl I know who's 17 years old and nearly housebound...that is truly tragic!

    None of us deserve this wretched disease....It's just simply our cross to bear and have the best possible standard of life while dealing within our limitations. Right now I feel like screaming at the world for me and all of us who are stuck with this awful mess with little understanding or comprehension from doctors, absolutely no compassion or even morally acceptable (hey...flatout illegal!) behavior from those that control our access to even paltry amounts of disability compensation. I get mad sometimes to avoid feeling hopeless, because I think that "hopelessness" is the point of no return for most of us. I'm just so dang frustrated that I have to put my new husband thru all of this...financially and emotionally, its bad enough that I have to deal with it, but even worse to have to constantly worry and concern the people I love.

    Sheesh. Tomorrow will be a better day, I'm sure. I was just FLAT OUT caught completely off guard by my docs response. I saw him about 3 weeks ago, and returning to work was not even the vaguest possiblity for him. He was frustrated that none of his therapies seemed to be giving me relief, and worried that I could only bear 15 minutes of the softest aquatic therapy...then crazy trip to er worried that I was having ministrokes....Now suddenly, with absolutely no further contact with me he's told my disability company I have to go back to work?!

    I'm just not sure to how to deal with a system that is so illogical. I never thought of myself as naive...perhaps I even thought I was a bit jaded at times....

    But I never had any possible idea that people who were so ill were put thru this kind of horrific system. Just seems absolutely barbaric and cruel. Just when I'd learned what a terrible travesty all of this healthcare/insurance nonsense is for people who suffer with chronic pain, and had decided to write a book or somehow help others deal with going thru this themselves (just as soon as I got a tiny bit of relief and got a bit more of my strength back! LOL), I'm suddenly expected to work 4 hours a day, commute 45 minutes each way, multitask like crazy....I literally don't think I could even DRESS for work right now! lol...I'm so sensitive heels and a cute little suit are a definite no no!

    Oy...what a mess! All we can do is laugh, I suppose.

    Thanks for extending a hand and listening to me vent. Again, this is very uncharacteristic of me, but as far as days go...this one was a stinker! LOL

    Hope you're doing well....Next time you speak to your stepson let him know that he's got a very achey, somewhat grumpy, but VERY BIG fan of his music!!!

    Hugs to you, lovethesun.

    Your post literally got me chuckling again, and I was pretty dang far from chuckles just a few minutes ago. Thanks!!!

    rachel
  3. lovethesun

    lovethesun New Member

    Though it reads differently in the fan magazines, Chad (the drummer)actually started 311.Nick came on board once they had started becoming popular in Omaha.I am very proud of him.

    My husband is a professional musician.He's a guitarist that cut off 3 of his fingers last year(2 weeks after I was diagnosed.I went from mild to severe,all at once)He is so good that he's back to playing and even booking for other people.Our son Jordan who is 15 looks like he will be good too.

    Don't be ashamed of bad days.You have to let yourself be real to retain good mental health with this.My husband also has incredible common sense.When I voiced the worry about having to stop work,he said that you ahve to do what's best for you and your health.you won't be good to anybody by letting yourself become sicker(meaning work was going to break me.


    Don't worry about what your doctor says.There are always other doctors and lawyers,Do what's best for you and then make it work.Hope this is not sounding to preachy.I just want to help you.(((((((((hugs))))) Linda
    P.S. Chad gave me my 1st book about6 fibromyalgia after I was diagnosed!
  4. jennypee

    jennypee New Member

    Caaaaan you feel the looooove tonight? This board is a very good place to be today, thanks everyone. I had to add that I'm a 311 fan too. Good stuff.
  5. lovethesun

    lovethesun New Member

    I'll print this out for my husband to see.He'll be glad that there are some fans on the board!
  6. orachel

    orachel New Member

    I read your bio right after my last response to you...what an amazing story you have!!! Your husband seems like a remarkable man to perservere in the face of such adversity...and to manage to pass on his love of music and talent to two of his sons! What a gift! I was given many blessings, but musical talent was not one of them! LOL Best I ever managed was to master the "can can" on the recorder (you know...the "starter" instrument they give to 3rd graders?!).

    I'm sure you of all people (based on your bio alone!) know what it feels like when everything kinda gangs up on you all at once! I'm dealing with it ok, I think...I had my 2 mondo negative posts (unfortunately for you, you got stuck reading both of them...so so sorry!!! Last thing any of us need is extra bummer in our lives!). Then I had a good cry and hid from the world for about an hour or so...My husband came up and assured me that we would be fine, regardless of insurance yahoos or doctors who change their minds seemingly for no reason, and he seems to be a bit more positive about our finances, which takes much guilt off of me.

    The hardest thing for me is that I was always a professional, and always able to earn a good living, long before my wonderful husband came along. He could not possibly be a harder worker in a more stressful field (he's a nuclear engineer), and so much of my worry is over his worry about shouldering the financial burden alone. The whole thing is a wicked vicious cycle! LOL

    I was talking to my godmother today, and we agreed how bizarre it is that many enlightened adults recognize the utter uselessness of emotions like guilt over things we have little control over, and self pity, but yet so few of us are able to turn that logical knowledge into a way to cut the guilt and self pity out of our lives! What a waste of time and energy! LOL...and I don't have a whole lot of energy to spare right now.

    So, just wanted to let you know that you caught me on a surprisingly baaad day, but I've got my groove back now. There flat out is no fighting this disease or any of the injustices we must endure if I get mired down in the "mopeys".

    Honestly, I think every time I've posted something negative, even if it wasn't overly so, I've been called out by a member here just to check on how I'm doing emotionally, and make sure I'm hanging in there. I find myself doing the same when I can see just by the tone of the post, not even complaining really, that someone is having a rough time of it. Isn't it an amazing blessing that we all have so many people who know our struggle rooting for us from all over the world?!

    Never in my life have I found a support system like that, so of all things, that has been an amazing positive to come out of this dang disease!

    Thanks so much for the emotional "boost"....I really needed it! You feel free to page me on the board if I can ever help you in any way. I don't know what I'd do without all of you guys here to support me, especially in this new time of diagnosis and coming to terms with my limitations.

    Thanks again...that was your "good deed" for the day!

    Many hugs!
    Rachel

    And Ps...the fact that your son was bright enough and compassionate enough to buy you a book about fm when he was what? had to be teens or early 20's, right?....Plus the amazing musical talent....I love my 3 stepkidlits to pieces, and would be so proud if any of them turned out to be so talented and compassionate. Good for you!!!
  7. lovethesun

    lovethesun New Member

    Chad is actually 34!.I'm still looking for ways to amke this a good thing.I paint little crafts for the church's boutique sale.I try to call elderly people that don't have anyone to talk to anymore.All from my little ol' bed.I make sure that I'm feeling up to that much though!I also look for unanswered posts on the board-as I see you do-We CAN make a difference.you know I usually am not that wordy.I guess you bring it out in me LOL Linda
  8. orachel

    orachel New Member

    get a bit wordy purely in self defense to my "book length" posts! lol

    I'm very glad you're keeping yourself busy. I had no idea you were dealing with those types of mobility issues. I have to use a cane occasionally, and often walking is a wretched experience, but I am still able (hey, forced really!) to get out of the house a few times a week to go to the myriad of doc appointments!

    As for craftiness...i've been getting really really into crafting since I married my husband and inherited 3 lovely stepdarlins'. I've discovered an amazing website and catalogue...oriental trading company. They have amazingly cute and simple crafts that are really quite entertaining and kids love them especially. The great thing is that a whole kit making 12 of a craft item is usually in the range of $4 -$12...for 12! That has cut down on my Holiday budget, bigtime. Plus, that could be something that you could do "with" the elderly buddies you keep company via phone. They're all very simple, and you do end up with a charming little project.

    Some of their stuff is just flat out bizarre, but they've got tons of centerpieces/ornaments/suncatchers/etc....all things that a person even with advanced arthritis (obviously thats a big concern for the older folks I know) can handle no problem.

    Just a thought! I had absolutely no idea that kid was 34! I'd have guessed mid 20's max...

    Feel free to give me a yell if you ever need a chat or a sounding board. I certainly "owe" you two totally guilt free griping sessions, as you tolerated my ickiness today with grace. Meanwhile, my family pretty much just wanted to wack me silly (not really, but I was a bit overwrought! lol).

    Thanks so much, and looking forward to keeping up with you in the future! I think you're definitely our big "celebrity" via proximity on the board. If I had a son that talented, I'd be shouting it from the rooftops! You're really quite sweet and modest about it!

    Hugs,
    Rachel
  9. jaltair

    jaltair New Member

    Good to see you post in your usual fashion, responding to lovethesun! I agree, this board is wonderful - full of a lot of really great people who understand each other. You are special as well.

    I feel so bad that you, or any of the younger set, have to go through all the aches, pain, fatigue, etc. that the DD's bring. I know what it is to be young and carry the burden of this illness. I like that you have a positive attitude, that's so important. I don't know what or where I'd be today if I didn't have one. My Mom tells me that I take after my Father. He is "easygoing" and happy/positive.

    Take care of yourself and be sure to keep us updated. I worry if I don't see you post.

    Warm wishes, Jeannette
  10. orachel

    orachel New Member

    Thanks for the concern! I've had a wacky wild koolaid ride of a live for the last few weeks. Today was the topper, and I most certainly was not my usual perky self today until lovethesun called me on it and snapped me back into shape. What a gift!

    Thanks so much for your post. It really is so nice to be recoginized, and to realize that each of us really really do have a HUGE support system out there just watching out for them and rooting for their success in every way. I just hope there aren't too many "shy" members who don't feel comfortable posting, as it has made an incredible difference in my life.

    Thanks so much again!!

    Rachel
  11. lovethesun

    lovethesun New Member

    I'm cutting down on the time in bed.I can usually get around the house cane free,For short distances I use a cane,a little longer,a walker,after that,Like fairs or malls,my husband has to push me in a wheelchair.Speaking of canes,did you know that they have colored Lucite ones online?They even have one full of Roses!

    I worked in daycare,I know oriental trading company well.It's based out of Omaha.I go there when we go to see our other children.

    The upside of this disease is I am now forced to find new things to keep myself occupied as well as new ways of doing things.What a blessing for me that at the stage of life where people get stuck in a rut,I can be more creative.


    I agree with Orachel That it's a shame you have it so early.I will pray that you find the road best for you!

    These warm-hearted posts have made my day! Linda
  12. LISALOO

    LISALOO New Member

    I too am younger, 27, so I have all the bad thoughts too, that I'm so young and can I deal with getting worse for the next so many years. I got CFS a year ago, and the last six months I have really slid down. It's good to know I can meet people here dealing with the same things.
    My thoughts will be with you.

    Like 311 too!
  13. orachel

    orachel New Member

    Haven't seen you around too much lately. I sure hope you're doing ok...

    There is a certain frustration about developing a chronic illness (esp right now for me, because my symptoms aren't being managed at all yet. very very ouchy! LOL) at a young age...

    I was always the one of my friends who did everything "last". Waited till I was 28 to marry, waited to have children (haven't done that yet, but have 3 lovely step kidlits). I do have the obvious fears that I might have "waited" a little bit too long in light of my current health. But one thing I have come to realize is that this is a surprising and frightening diagnosis at any age. Those stricken with this DD in later years also have the standard issues of aging to deal with, and often have to deal with caretaking a spouse or parent in ill health. I guess its not easy for anyone.

    But a member on here today (cannot for the life of me remember who it was! One of my favorite people, but the "fog" has set in my brain tonite! LOL) reminded that

    When God closes a door, he often opens a window.

    Excellent advice, regardless of your religion. I believe that all of us have something to contribute to the world, whether its painting crafts to support the church and being a wonderful parent and stepparent (like lovethesun) or struggling daily to go to work and continue with a job that is physically hard, but is contributing to the world in a positive way, or even if your contribution is hanging out here all day just bopping in and out of posts trying to brighten the days of so many DESERVING and LOVELY people. We've all got something to offer.

    I get very frustrated and upset sometimes..I think a diagnosis like this carries with it the same "stages of grief" that one experiences after the death of a loved one... It is hard to come to terms with the fact that the life I may have from here on out may be VERY different than the life my husband and I had planned. But I have to believe that I have a purpose in this illness...there's a reason I'm having to endure this and even worse, put my husband and family through the worry and anguish. Obviously I have some work to do in some areas. I just have to trust and have faith that I will be "led" to the ways in which I'm supposed to reach out to others.

    I think that is the best we can all hope for. Above all, this illness has made me really EXAMINE MY PRIORITIES in a big huge way, and I certainly realize now that I took an awful lot for granted when I was "well". I wish more than anything that my "wake up call" didn't have to hurt so dang bad all the time, but hey...I don't call the shots here, obviously. We're all just trying to make the best hand out of the cards we're dealt.

    I hope you're feeling a bit better....We sure all deserve a few days "off" from pain! I think we need a union! LOL

    Hugs,
    Rachel


  14. lovethesun

    lovethesun New Member

    I'm glad you are here with this board.If I didn't have this I wouldn't have "met" so many great people.I agree with orachel.There's a reason for everything.Glad you like 311! Linda