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Thread: Afraid to die of this!

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    Thumbs down Afraid to die of this!

    Im so scared, i just recently got over my third serious flare in the last two yrs. Ive had 7 hospitalizations stay. Iv gotten severe percarditis that have led to effusions n lung collapse. DVTS n pulmonary embolism. Developed avascular necrosis of both knees from all the frkng steroids they pumped through my iv. I have fibro sjorens and reynauds. I m tired of being tired n gainin weigh n not being me. Im wrkin full time n it seems i barely have energy for that. Im becoming depressed n on top of all this i cant stop wrking. Im the sole supporter of our family of five. Hubbys out of wrk since july!!!! All the stress is getting to me. Ive been having chest pains again like its leading to pericarditis its all to familiar to me. Im afraid of calling my dr. I dont want to be hospitalized again n cant afford to b out of wrk again. I feel like im going crazy...i dont want to be sick!!!!! Ive been taking my meds faithfully so i dont understand how this can happen??? Im sorry for the rambling but i know your the only ones to understand : ' (

    Mari I can see you saying go to the hospital, don't play with your organs! lol, Im just hoping its just stress telling me calm down or I will get you!!! I just needed to come and vent, I hate this decease and what it puts all of us through. When will it ever end?

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    Quote Originally Posted by chikititalinda View Post
    Im so scared, i just recently got over my third serious flare in the last two yrs. Ive had 7 hospitalizations stay. Iv gotten severe percarditis that have led to effusions n lung collapse. DVTS n pulmonary embolism. Developed avascular necrosis of both knees from all the frkng steroids they pumped through my iv. I have fibro sjorens and reynauds. I m tired of being tired n gainin weigh n not being me. Im wrkin full time n it seems i barely have energy for that. Im becoming depressed n on top of all this i cant stop wrking. Im the sole supporter of our family of five. Hubbys out of wrk since july!!!! All the stress is getting to me. Ive been having chest pains again like its leading to pericarditis its all to familiar to me. Im afraid of calling my dr. I dont want to be hospitalized again n cant afford to b out of wrk again. I feel like im going crazy...i dont want to be sick!!!!! Ive been taking my meds faithfully so i dont understand how this can happen??? Im sorry for the rambling but i know your the only ones to understand : ' (

    Mari I can see you saying go to the hospital, don't play with your organs! lol, Im just hoping its just stress telling me calm down or I will get you!!! I just needed to come and vent, I hate this decease and what it puts all of us through. When will it ever end?
    Chuckles.. yes, that is exactly what I am saying but I have a few more things that I want to say.

    I understand the money issues. I have been on my own since my daughter was 8 months old and she is almost 17. Lupus taking my work, my job, my house, my insurance was the hardest thing that I have ever gone through. The stress over these issues just made my disease worse. You, my friend, are on a merry-go-round and you have to get off of it at some point. If your health (heart) takes you down who is going to take care of your family then?

    get to the doctor. You can't play with this. We love you and you are free to vent any time that you want. Lupus doesn't make sense. I is simply a POS that we have to deal with the best that we can=
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    i want to tell you a little of my story.

    when i was diagnosed. i had been sick for years.
    i was still working, but having trouble completing every shift.
    i had 4 major organs involved, but didnt know any of this.

    soon after diagnosis,
    because of my symptoms, i decided to give up work.
    the result of this was that i went bankrupt.
    i lost the house we were building,
    our car and all of our toys.

    my wife was already on the pension, because of her declined health.

    3 years later.......
    my health is much better.
    i have my lupus under control.
    my fibro is far from controlled.
    my stress level is reduced dramatically.
    i still flare when stressed.

    basically i had a simple choice.
    quit work...
    change my lifestyle....
    or become extremely sick, (and possibally die).

    i understand your fears......
    i had them also.

    talk to your doctor.
    look at all the options.

    some sound bleak at first,
    but we can adapt, and life can improve.

    your mental wellbeing does make a big difference to you physical wellness.

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    Chicki, I have no sage advise, just know that there are many people who care about you. What terrible choices we have to make sometimes, but you do have to take care of yourself. Wishing you good sleep, gentle hugs and peace with your decisions.

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    Im sorry, I understand worrying about a hospital bill. I really hope things get better because the stress is probably making things worse. I would suggest call your doctor and ask if you need to be coming in to see your doctor. I understand money is tight but a doctors visit will be a lot cheaper than a hospital bill. Call and ask and do tell them what is going on. Vent more on the forum because your WHL family do understand, don't bottle all that stress up, and do call your doctor . Im not going to tell you to relax because I know it's hard to do. Your in my thoughts because my family is going through the same thing and I do hope things start to look up soon.

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    Everyone before me has said it so well...it isn't worth losing your health completely to hold on to a job, or to avoid calling your doctor because it is too expensive. I had to give up my job in May of 2011 because my health was declining so rapidly I was afraid I was going to die...I LOOKED like I was going to die. My hubby and I decided it wasn't worth cutting my life short just to bring $$ in. We would make it through, no matter how hard it was financially. Material things don't last, but the difference you can make in someone's life will last forever. PLEASE go to the doctor before this gets out of hand and you land in the hospital! (((gentle hugs)))
    May today bring you joy, freedom from pain, and abundance of blessings!

    Kathie Lea

    “If the Lord be with us, we have no cause of fear. His eye is upon us, His arm over us, His ear open to our prayer--His grace sufficient, His promises unchangeable.”~John Newton (1725 - 1807)~


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    Linda,

    Stress is like poison for us. In the past, I've been on all the right meds, but I was under tremendous stress at the time, and it was like I was taking no meds at all.

    Eliminating all stress is a near impossible task, and isn't a practical goal in my opinion, so it's not something I even think about recommending to people. But if you can reduce your overall load of stress even by a small amount, it can really help your health and state of mind. Is there any way to delegate more responsibilities and chores to other family members? Can your husband take on more family/household duties to take some pressure off of you?

    There has to be a way to cut a little stress here and there, to give you some room to catch your breath, and get all this flare-like activity in you calmed down. I wish I had better ideas for you. I hope things get better ASAP.

    Rob

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    One called you Chickie and one called you Linda, so I am going to call you Chickielinda.
    I totally get where you're coming from. I also work full time and it is killing me.
    But after I get home, I can relax, it is only my husband and me. The kids have all left the nest a long time ago.
    I do understand the financial part of your problem, I can't stop working either, but work stresses me out physically and mentally. I just got home from work and I am sitting here in alot of pain. The first thing I did, was take some pills and hope the pain will subside soon. The stress and the lights at work are killing me.
    I was going to suggest, what Rob said, maybe your hubby or your kids can pitch in, to get some of the load of your shoulders.
    For the doctor and hospital part, I have to say, you have to go, because you already know, what can happen. I have had Pericartitis before, that is nothing to mess around with. But I also know, it is easier said than done.
    I hope things will get better for you soon.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    I know ya'll don't want to hear this but I have been exactly where you are and I saw no way that I could stop working. I would most likely still be working if I was left with a choice (seizure in the middle of my office put a halt to that). I had no idea how we would make it. What we learned was that many of the things that we thought were necessary were actually luxuries. We did lose our car and cut off cable and many of the things I thought we had to have. We got a cheaper car we paid off with my 401k money and then we lived on 300 bucks a month until my disability game in and that was quite awhile. Once the guilt over not being able to support my daughter and losing everything went away I promise you I began to feel better. Not fixed. I have been in a really bad flare for quite awhile but I have no doubt it would have been worse if I was working.

    I am not telling anyone to stop working. Only you know that. I am saying that when you start looking at how work is making you feel try to look at what you have to have and what you only WANT to have. They may be very different than you think
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Linda,
    Like everyone else here, I agree that the job is not worth giving up your health. I had to give up a job that I loved, and it was a hard decision to make. It was the best decision for me, though. I'm much more relaxed now and my health is much more stable.
    I hope that you are able to get some rest, and that the stress lets up a bit.
    Be sure to let us know how you are doing.
    Hugs,
    Marla

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