This is on my profile where it says...Tell us a little about yourself (HAHA)
I am a 52 year old mother of 3, grandmother of 3 and live in the Ozark Mountains. I use to live in Memphis, TN and owned an Advanced Life Support Ambulance Service. I moved to the mountains about 6 years ago. My family all ended up in the same area. I have been divorced about 5 years after a 20 yr marriage.
I became ill after using tanning beds in my late 20's. I got what I thought was the flu,but it never went away. After countless doctors, I have been diagnosed with lupus, cfids, mixed connective tissue disease, and fibromyalgia. I have overlapping symptoms.
I have tried almost all medications and it took years to find some that helped. Anti-inflammatories never helped. Prednisone is the only thing that really works, but the side effects become numerous after a few months, so I have to get off them unless in a severe flare.
I have had 2 surgeries for gastric reflux disease, almost died when they sliced a main artery to my liver. Neither surgery was successful. I have bouts of IBS. Every bone and muscle in my body hurts. My illness has progressively deteriorated. I went through an early menopause and it seems to have worsened considerably since then. My cognition is bad now compared to before. My liver has now developed issues, my cholestorol and triglycerides are very high, I am now suffering from depression ranging from mild to severe.My pain has worsened considerably in the last 3 years. I am bedridden alot of the time now.
My siblings and my father now all have some type of auto-immune problems as well, although not as severe as mine. My children are already showing signs of the disease. This breaks my heart. My illness kept me from enjoying alot of their childhood activities, and has caused considerable guilt.
I currently take a number of meds, which I don't like, but have no choice really. I periodically take prednisone. I take flexiril for the muscle spasms, hydroxyzine for itching, lovastatin for cholestorol (which is causing my hands to throb and affects my use of my hands...I drop eveything) I take percoset twice a day but even that now doesn't really help long. I have tried lyrica and sometimes take tramadol with it, but the side effects of the lyrica are not good. I become severely depressed (even suicidal) on the lyrica so I have to stop it when the symptoms get to be too much to handle. I went through early menopause and have not yet started estrogen replacement, but am considering it now. I hope it will help with the depression. There are other meds, but I can't think of them right now.
I was diagnosed with lyme disease a few years ago and have been hospitalized many times over the years.I have high titers to Eipstein Barr, several Herpes titers, intermittent positive ANA.
It is becoming much more difficult to manage my illness now. That is very hard for me to accept. I use to be so active in various settings. I have pretty much become reclusive in the last 5 years. I seemed to cope alot better when I was around my friends. We have all moved apart to different areas of the south. I get extremely lonely now which is probably worse than anything else I suffer. I may as well be a hermit.
I have never been a part of support groups as I was able to manage things ok, but now I really think that was a mistake. I need to find others in my community, or would like to make some new friends here.
I do alot of research on auto-immune illnesses. I am a world news junkie, love politics, entertainment news, science, technology...etc. I love movies. My favorite tv shows are NCIS, House, and The Good Wife (just started it) I miss them half the time because I forget they are on.
My memory and hearing has become worse. I tend to forget if I take my meds. I need to get a pill dispenser.
I have severe, chronic Vitamin D deficiency now and hypothyroidism, so take meds for those too. My teeth seem to be detoriating fast, I guess from the Vit D problem? My eyesight is now getting worse as well. I am very farsighted and one eye is much worse than the other. I don't think my eyesight is related to illness, just age.
I use to love 4wheeling, boating, long walks, reading, pc gaming but haven't done them much this last year. Most mornings are very bad until my pain med kicks in. My muscles and skin are sore to the touch.I have severe muscle spasms when my vit D gets low again. Basically I am just a mess now.
I am Catholic and I use to be very involved with my faith, but don't even do that anymore.I attended daily mass for years. It was the greatests sourse of strength and peace all the years through this. It is 40 min to the nearest parish and my driving has become affected due to my meds. I just don't focus and have barely avoided collisions, so I have to skip my meds the night before I drive to be safe. I don't plan much anymore because my illness goes from ok to horrible many times a day.
I am just overwhelmed now. I have almost given up and I don't see my illness improving anymore. I use a very soft mattress because of my muscles.Hot baths help me. I use to get massages alot and they really helped but I haven't in recent years. as they are very expensive.
I applied for disability and was finally approved after a 3 year battle with them. I really miss my career. I wish I could work as I think it would help me mentally, but I am just too sick to work.I have thought of working parttime but I would lose my disability and I have so much pain now it would be hard to work.
I have a cat 15 yrs old who is like one of my children to me. He has been a great joy to me.
My grandchildren are just precious. I have 2 grandson, age 10 months and 8 yrs and one grandaughter, age 4. I love being with them but it is very difficult to keep up with them now.
I have led a very good life, with the exception of a horrible marriage.I think the stress from it worsened my condition. I stayed with him for the children as I couldn't afford to care for them until I started the ambulance service. Then I got sick again. I was a real estate agent after I moved to the Ozarks but then got too ill to work. The fight for disability was very hard on me. I ended up losing everything I had worked for all my life. with the exception of my home. I managed to pay it off, which is a wonderful thing. It gives me some security, but it is very difficult now financially.
I love outdoors but the sun tends to make me worse. Humidity makes me hurt alot worse. I love the mountains and feel very blessed to be here. I consider myself very blessed to have my children and grandchildren here near me. My X is here too, which is good for them.
I suffer from insomnia. I have erratic sleep habits. It seems to cycle..no sleep = worse pain = more muscle fatigue/soreness. If I miss sleep, my symptoms are much worse.
Despite all this, I am trying to find happiness and I take advantage of any time I feel ok. It is just much less of the time now. It really scares me and depresses me. I think when I am severely depressed, that is the worst of all. I am going to ask my doctor to put me on hormone replacement and see if it improves. My mother has to take it or she gets really emotional. I hope it helps. I cry often now. I rarely ever cried in my life, unless I got mad. Now I just cry for no apparent reason.
I am not very happy with my doctor here but I can't find a doctor anywhere who will take new medicare patients. She is just a family practice doctor but no specialists will take medicare here. She is the only doctor I have found in a 50 mile radius to take it. I am still looking.I am determined to beat this illness. I am speaking emotionally. I finally accepted the fact I would never be cured. That alone was the hardest thing to do.I was so independent and so active in life.I would love to get that back, at least enough to make some friends and go out for lunch and movies, like before.
Post edited by: BlairK, at: 06/16/2010 06:06 PM
