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Date Joined Aug 2009
Total Posts : 5
Posted 8/16/2009 11:58 PM (GMT -7)
I need help, over the last year I have had many thoughts of ending this problem I call life. I don't want to but I don't know what else to do. I have severe SLE, High blood pressure, chronic pain along with a number of other problems. I'm not writing this to be a jerk, i just don't know what to do. about
10 years ago I found out that all of the problems I had growing up is called Lupus when they start happening together.Since then I have had both my shoulder and hips replaced and my right knee. My normal weight shoulder be about
170- 180 lbs but I'm 250 cause of the prednisone. I had a clot in my lungs and I have to take warfarin also. I'm in severe pain, the kind where you just become mad at god, your parents and everyone else. My teeth are rotting in my mouth and I have no insurance cause I'm legally handicap and my wife's job doesn't have it. I have no teeth on my bottom right . Holes starting at the gum line on my left side and holes on top of them. One of me front teeth is gone and the other stared having the same ring on decay near the gum line. The dentist I've gone to say the can start trying to fix it but I should understand that even though they are helping it's not going to go away. It most likely will continue. Because my lupus was so bad in the beginning I was around 100mg a day when I started prednisone and prednisolone 10 years ago but I'm at 20 - 30mg a day now. I'm also taking Cellcept in hopes that I can come off of it but every time I go below 10 mg's I end up in the hospital. The weight from my body is destroying my ankles. I have a fracture in my right ankle now. I'm 32 years old and always believed in working hard to support my family. My brain is saying fight, you can do it Rob then my body puts a stop to that, painfully. I've tried going back to work and I physically cant do it. Stress makes it so hard. My daughter told me her friends think I look scary because of my facial expression and my blood shot eyes. I sleep maybe an hour or so every other day and things like Ambien don't work at all. I've noticed that over the last 10 years the respect my family has for me has gone downhill. Because our bedroom is downstairs I stay here so I don't have to climb the steps. My family spends all of they're time upstairs, away from me. Even though I've told them how I feel. My wife ignores me, kids are becoming more disrespectful (to me) everyday. When I have to go into the hospital I expect the be there alone. If I'm there 2 weeks, I may get my wife to stop by for an hour if I constantly harass her and get lucky. I cant even get her to take me to the hospital. I almost died once cause she thought what I was experiencing was just another day of pain. I honestly feel like it would be better for all if I just died (less expensive too). I forgot how old I was this year and have had to have my mother tell me ( that's embarrassing) and have trouble concentrating on things (ex. reading a book).My credit is destroyed because of the bills I have and lack of payment to others. I have dentists, a nephrologist, rheumatologist, gastrologist, internal med doctor and a dermatologist that all want there money NOW (there are more but I don't remember the names). I jump every time the phone rings and I'm terrified to answer it. I'm scared of what I may do but I cant take it anymore. Please talk to me. If I could get my brain to allow my to feel like its OK to be home I'd be very happy. I got off of Methadone cause of all the bad things my Doctor told me could happen to you but even on that I was in incredible pain. Now I'm just taking Percocet. Reading this your probably thinking this is a joke and I'm a jerk for it. Some may think I'm wrong for scaring those that do believe me, but I have nobody to help except my mother and dont want to put added problems on her. I just want to know it's worth living in this situation and maybe get some advice on how to help myself. My only other option is downing the bottle of Percocet and Warfarin in hopes of getting peace at last. I apologize for the strength of my words.
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Date Joined Apr 2009
Total Posts : 122
Posted 8/17/2009 6:31 AM (GMT -7)
Oh how I feel for you right now. I was diagnosed with Lupus this last March and the worst part of all of this disease is that many other individuals do not understand what goes on with us on a day to day basis. I have a very wonderful supportive husband and 2 teenage sons, but even they have a tendency to go about
their daily events and sometimes don't understand why I don't want to participate or why I can't participate in the many activities they take on. If they see me up around doing what I usually do as a wife or mother, they figure I'm good, but they don't really know that most days I have some discomfort in some part of my body and I just go through the motions to get through the day. However, I am doing much better in the last couple of months due to the fact that I truly focus in on myself and get a lot of rest. That sounds like that could be a big part of your depression and how you feel on a daily basis - sleep is a big factor to our overall well being. If you are sleep-deprived, every day normal activities are hard to take on, but it sounds like you are beyond that. Have you talked to a sleep specialist about
what is going on. Being chronically ill is the hardest thing. Everyday is a crapshoot, you don't know what the day is going to bring from the day before. How was your family when you first were diagnosed? Have they ever been to any of your appointments to your doctors to truly understand what this illness can do, and that you are doing everything you can to stay well. Have you talked to your rheumatologist or any of your other doctors about
your mental spirit and how you truly are soooooo depressed that you are having suicidal thoughts? You need a support system, and this is a good place to start. This forum has helped me out soooo much in the last 6 months and I know that there are others out there that truly understand what we go through and will always lend an ear and moral support to our everyday problems and feelings. You might also check in the area where you live if there is a lupus support group that you can join. Please hang in there, I know you feel like things are at there worst. If you have had a chance to read through many of the other members questions and concerns, you will realize that many people are going through tough times and you have to take it one day at a time and not look at the whole picture. It is good that you have shared your feelings today and know that we all care and want to help you have a good life. Take daily baby steps to improve your health as much as you can and things will work out. Keep us posted please.
With God's love,
DX - lupus and carpal tunnel syndrome
RX - plaquenil, prednisone, lisiniprol, folic acid, anti-inflammatories, fish oil, flax seed oil; daily vitamins
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Date Joined Jul 2009
Total Posts : 4796
Posted 8/17/2009 7:22 AM (GMT -7)
Welcome to the forum. You are among people who truly understand the pain and
frustration of a chronic illness.
We are here for each other. Come here to vent and ask questions. This illness can
be so overwhelming. It is good to know that I can come here and be supported. I am
glad you have found us and joined our forum "family".
I believe we are all very strong people, it takes a lot of courage to live with this
illness. We can learn to take control. We are not our disease. We are good people.
Please talk to your wife and explain exactly how you are feeling. Does she realize
you have been thinking of ending it all. Sometimes when we keep every thing inside
people just assume we are coping. Be straight forward and honest with her. You
deserve to be heard. Please don't give up!!!!!
Glad you found us!!!!!
possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
Pseudothrombocytopenia, biopsy shows a Scleroderma variant
MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
Post Edited (crazykitty) : 8/17/2009 10:24:55 AM (GMT-6)
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Date Joined Mar 2006
Total Posts : 2606
Posted 8/17/2009 7:33 AM (GMT -7)
I'm so glad you found us. We lupies often feel so alone because lupus is such an invisible disease. We are here for you Rob, and will listen and understand, even if you want to rant several times a day. We know what you're going through and we know how hard it is.
Like Lynette, I found this forum to be a lifesaver when I was first ill and didn't get out of bed for two years. My family and friends all secretly suspected that I was just depressed, and no one understood my pain and physical problems. But when I got on the forum I found a small family of friends that understood what I was going through and listened to me and offered me the kind of support I craved. I hope you'll find that here as well.
I don't know what your faith is, Rob, but in my eyes you're a precious child of God and you deserve to be loved and cherished just as anyone else does. I feel sad to hear that you are so ignored and unappreciated by your family.
What do you do with your time? Are you able to get out and around? I know that during the two years I was in bed, depression set in along with the lupus because I was bored, no one understood me, I was in pain, felt bad, and worst of all, I was afraid I would never be normal again. But I got better. And I pray that you will too.
Do you have a good relationship with your doctors? I urge you to talk to one of them about
your desire to end your life. You obviously need help. If it gets bad enough, please go to your nearest emergency room. There is help out there.
Please join us here and tell us more about
yourself. We really do care.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex
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Date Joined Jul 2009
Total Posts : 42
Posted 8/17/2009 11:41 AM (GMT -7)
Hi Rob, please dont do anything that drastic! we all have alot of the same problems as you do here I too had dental problems caused by lupus I had dentures by the time I was 30 and like you I have put on 100 lbs from the steroids I dont have a spouse I have 1 child that is grown I have to live with her cuz I have seizures cant drive anymore and to be honest she can be less than understanding at times can you get out at all? if you have mobility problems you can get a wheelchair from goodwill or salvation army dont stay at home and dwell what helps me besides this forum and antideppressants is my church family I urge you strongly to talk to your doc about
your thoughts of suicide , these feelings may be a symtom of lupus I have had it in the past with brain inflamation . please see if your family will get more involved it did help my daughter to go to a rhumey app with me she understands a little bit better of what I go through but nobody truly understsnds unless they have been there and I have Rob, you are not a jerk you a person with a devistating ilness and sometimes it is hard to cope please talk to a doc or call a hotline or talk to a clergyman your not alone Rob not anymore please keep posting and keep us updated ...........you will be in my prayers today Rob.........nona
dx Lupus,whith brain, kidney ,heart invovment
Rhumitoid Arthritis ,seizures ,autoimmune hepatitis.
Meds-planquanil, lamictal ,lopressor ,imdur ,nitro, vtaminD ,metformin,
synthroid, lortab, phenergan, xanax ,prednisone ,kenelog injections
Never Give Up!
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