exhaustedchic

Discussion in 'Fibromyalgia Main Forum' started by exhaustedchic, Oct 9, 2005.

  1. exhaustedchic

    exhaustedchic New Member

    I just found this site, after feeling so sick all day I barely left my bed. I have been going through this CFS for 40 years. Doctors, of course, have found nothing in any blood tests and keep pronouncing me "depressed." Ok. I am. I hardly remember what it is like to feel well. I catch one infection after another (usually viral) but lately lots of excema, along with the usual chronic headaches and flu-like symptoms.

    I no longer have insurance of any kind. I have a very small amount in a retirement account and very little social security coming in, so I have no money to see any doctors, and yet I still am stil not yet qualified for medical. I have diverticulosis and in 9/02 got perotonitis, septic shock and a colostomy. I had it reversed 8 months later, but I was near death from infection in ICU for 6 weeks, then a nursing home; then 1 year in a toxic "board and care." I received a small inheritance and have been living alone in my apt for over a year, but when I run out of money, I don't know what I will do. I cannot go back to a residential "board and care." These are places of misery for the discarded mentally ill. State and federal laws are continually broken regarding dispensing medications, providing healty food, maintaining sanitary conditions, letting sick people die, ad nauseaum.

    I am a paralegal and I worked for 6 months (10/04 to 4/05) before I collapsed from the stress and sickness and pain.
    I have significant arthritis, herniated disc, lost anterior cruciate ligament in 1990. So, physically, I am a mess. I have no energy to exercise most of the time. Occasionally I may have a good day, but every time the seasons change I become so sick with congestion, body aches and fatigue, I sometimes don't do anything but do my grocery shopping for weeks. I live alone. This is a lonely disease and I often feel death would be more welcome than living like this any longer.

    Sorry this was so long.....lots of pent up stuff. I've never met a single person with the symptoms that I have had since I was 20 years old. I am 63.

    Any support at all would probably go a long way in helping me to "hang in there."

    Thanks, you guys,

    Mary Ann
  2. exhaustedchic

    exhaustedchic New Member

    Thanks for your reply. You are right. There is a deep emotional component in this illness. To find a kindred sufferer makes a tremendous difference. I am so tired of everyone telling me I am neurotic or just dismissing it as hypochondria. I wish!

    I have no money for the FFC doctors. So I can't get any real treatment. The doctor I do see charges me $60.00 per visit (about every 3 months) I take darvocet for pain and diazapam for nervousness and anxiety. The SSRI's have not helped. When I am completely broke I may be able to get on SSI, but in California you simply cannot live on $865.000 per month. My rent is $900.00!

    I may move to Arizona. Hot dry air makes me feel better.

    Well, I'll keep reading the message boards to educate myself and try to get to know some of you. At least we are all empathetic towards this bewildering illness.

    Thank you for the encouragement. (Can't get the icon to stick on).

    Mary Ann
  3. exhaustedchic

    exhaustedchic New Member

    Hi Hanginthere!

    Thanks for the encouragement. I went to bed right after I wrote the last message. Today I feel physcally but really depressed. I will go to a meeting with a friend tonight, and that will help, but I hate this feeling of complete apathy. I need to get out and be around people and do something productive and make money too. I have just lost so much confidence that I will be able to maintain any sort of stability in any endeavor. One day up, next day awful.

    Phoenix is still cheap compared to here. Apartments between $350.00 and $600. I just haven't had the energy or motivation to take on the job of moving all my stuff and going to a place where I literally know no one. I do know I need to be someplace where I am less isolated. So California is so spread out and people don't trust each other enough anymore to be friendly. I have had a few people do some very dishonest things to me and even I am suspicious.

    Well so much for that. What is grapeseed? I bought some grapeseed oil for cooking, and I take vitamin supplements, but I don't really know which ones are right.

    I am going to go out of the house tomorrow, even if it's to the local library or I'll go crazy. Do you of any support groups in my area? I'm going back to check the home page for support groups. Cheers me up just to communicate with you.

    Thanks again,

    Mary Ann

  4. exhaustedchic

    exhaustedchic New Member

    Hi Gigi:

    Thanks for the encouragement. I used to be able to read novels, etc. for hours, but my concentration has realy suffered. I don't qualify for SSDisability, because I have not paid enough into the social security system. Married and worked part time when pay was low (30 years ago). Divorced, then had my own business and was not far sighted enough to pay much into Social Security..so right now I am receiving $600.00 per month, minus $61.00 they take out for an "overpayment of SSI" on which I filed an appeal and on which they still have not ruled. Nonetheless the SS bureauacy is so untouchable, that not even Due Process applies. There has been no ruling in 2 years no matter what I do.

    Where in So. CA do you live? Maybe we can get to know each other. It certainly is a lonely life we live with this illness.

    I have to go back and read your message again, since my concentration today is definitly impaird.
    (edited to remove email address per rules)

    Sincerely

    Mary Ann
  5. exhaustedchic

    exhaustedchic New Member

    Hi Hangin (do you ever give you real name?). Thanks for the info. Can't take aspirin, but will try olive oil. I tried to copy and paste some of this to Word, but it didn't work so I just had to save it under my aol favorites. I have only a dial up and everyting is sooooo slow.

    Your message said you were going to cut and paste something for me? It also said "message edited." What does that mean.

    I can't read any more either unless its legal stuff, educational- medical stuff, etc. Reading for entertainment no longer engages my brain. I don't know why. I loved to read up until recently. Depression, worry about surviving, etc. when I wasn't worrying about going homeless, I used to read one or two novels a week.

    Talk again soon. I'm off now.

    Mary Ann
  6. exhaustedchic

    exhaustedchic New Member

    Thanks for the tip

    I tried to give ggigi my email address but it was edited out by the managers because I suppose it's against the rules. Is there no way we on this board can ever get to know each other?

    I amy not qualified for "disabled" programs until I run out of money completely. I don't think I could remain solely at home and not go crazy. I want something non-stressful and part time. I'm good at my job if I can get an understanding boss, or arrange to do independent contracting.

    Talk to you later. Tired already :)

    Mary Ann

  7. exhaustedchic

    exhaustedchic New Member

    Thanks for the tip

    I tried to give ggigi my email address but it was edited out by the managers because I suppose it's against the rules. Is there no way we on this board can ever get to know each other?

    I amy not qualified for "disabled" programs until I run out of money completely. I don't think I could remain solely at home and not go crazy. I want something non-stressful and part time. I'm good at my job if I can get an understanding boss, or arrange to do independent contracting.

    Talk to you later. Tired already :)

    Mary Ann

  8. exhaustedchic

    exhaustedchic New Member

    I tried to give you my email, but they edited it out. I guess for my own protection? How in the world would any of us get to know each other if there is no contact other than this message board.

    Well. I'm tired now, so I'm going to rest a bit and get back later. You sound like a very nice person.

    Hugs back,

    Mary Ann
  9. exhaustedchic

    exhaustedchic New Member

    Hello, Nanjee:

    Thanks for your warm and peaceful reply. I have a lot of the FM symptoms too, but not really the "tender, painful" points in my body that others speak of. I stopped talking to all doctors about my symptoms about 10 years ago, because it was always too "controversial" to be taken seriously. None of us wants to be patronized, so I take some pain medication and an anti anxiety pill and leave it at that. I don't have medical insurance and won't have medicare for 2 more years. I am going to Phoenix in a few weeks to find an apartment. It is much cheaper than So. CA.
    With a little luck I may find an understanding employer close to home so that I can work at least part time. I don't have enough social security to ever live on. I will either have to work until I die, or end up on SSI or, against all odds, find a suitable partner :)

    How many are in this group, do you know? Maybe there are thousands. I think there are way more people with this disease that the media is aware of or that anyone will acknowledge.

    good luck,

    Mary Ann
  10. exhaustedchic

    exhaustedchic New Member

    Hi:

    thank your for your warm support. I feel sometimes as if if i am truly going crazy. I was too ill last night and most of today to even open my laptop. So sorry. I will need mental energy too in order to go to the the fast paced chat rooms. I will keep the determimation to try everything. Talk later, today, I am I am bed all day( how awful this is to admit, but I know you understand.)

    Hugs:

    Mary An

  11. exhaustedchic

    exhaustedchic New Member

    Hi, butzie:

    Thank you for your warm welcome. Today was very hard. I have only been able to get up for small periods of time. Wow....if I said that to any of my normal friends they would not understand. I think I have a combination of CFS
    IDS and Fibro, since my muscles and joints ache sometmes so fiercely that I am unable to sleep.

    I feel unwell today, but I know tomorrow or the next day I will feel energy again. I am gong to write to CNN, advise about this web site and hoprefully they will do some sort of special about this very real illness.

    }}}}}}back,

    Mary Ann
  12. exhaustedchic

    exhaustedchic New Member

    It has been 6 days since I have been to the site and yours is the last message I received.

    Well, my CFS flared briliantly and, pursuant to your advice, I stayed in bed. I lose track of time when I am bed-ridden for more than a day or two :)

    I hope you are doing well, my friend.

    I will be back again later to try to read more.

    Hugs,

    Mary Ann