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Thread: I hate this disease, i'm so freaking miserable

  1. #1
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    Default I hate this disease, i'm so freaking miserable

    I was recently fired from my job because I was having a flare up and missed several days in a row so they had to let me go. Now I'm feeling really awful. My body is hurting every time I make a move. I think I brought this upon myself. Yesterday I agreed to pick my little cousin up from school take my little sister to work and also watch my little niece and nephew until my mom got from work. My day started about 12:30 and ended at 5:15. I was out in the sun for a total of 3 hours going to different stores and just waiting for the school bus. I then started to feel a little tired so I head home to lye down. Oh I also had 8 bags of groceries to carry up to the third floor! I ended up taking 6 and left behind the the heavier items my boyfriend brought them up once he got home. I would have left them all but the heat we would have put it to waste. So I wake up this morning and feel so MISERABLE. I can barely walk. I'm so tired of this disease I wish I can just give it back lol.....i know many of you don't have insurance so what do you all do when times get rough? I go to a clinic but I have to pay out of pocket right then and there. The doctor is nice but not much help. I told him a list of all these new symptoms I was having and said its just your lupus getting worst. He lowered me down to 200mg of plaq and added 5mg of prednisone. I'm taking the plaq but not the pred because I don't know what my side effects might be. What if something goes bad and I need to see a doctor but have no money. I suppose I can go to the ER but they dont seem to know much bout Lupus. I'm developing high blood pressure now and don't know what to do. The doc told me my liver looks like I been drinking pretty much every day ( drank once on the last 8 months)and that I need a CT scan but can't help me cuz I don't have insurance. I feel like something else is going wrong with my organs, all because of how the doc acts toward me. Yes, I'm scared. I feel alone and useless. I feel bad that I can't be with my fam like I use to. My boyfriend understands but we don't have a typical relationship. I feel like I'm holding him back. The other day my mom told me that when I'm around I bring so much joy in everyones day and how proud she is of me. She calls me literally 10 times a day wanting me to come over (LOL TEARS) then I sit here and think.......WHY ME?? Out of all 9 of my brothers and sisters this disease picked me! Then I do some more thinking....im glad it chose me. I don't want them going through this. I'M SORRY ITS SO LONG, I TREND TO LET IT BUILD TIL I BURST.
    THANK YOU FOR READING =D
    Diagnosed with Lupus July 19, 2011 Lupus nephritis stage 3 and taking 20mg prednisone, IV Retuxan and citoxan once a month.
    Vitamin D 50,000uI,1000Mg cellcept,5Mg lisinopril,200Mg labetalol,325 Mg ferrous sulfate

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    Gosh I am not sure where to begin. There is much we must learn to do to live a better quality of life with this lousy disease. Balance in our roles in life, is very important. We can't be everything to everyone or we crash and burn. We must be able to say, "I can't."

    As far as the doc reducing the Plaquinil in a flair, I don't understand that. Adding prednisone or bumping it up to reduce a flair is vital for me when I am in a flair, and then I slot reduce it as directed by doc. If I am in a flair and I don't take my prescribed prednisone, an organ or system will get inflamed and then I am really a mess for awhile. People die from this and so I encourage you to take the meds. Go to bed. Rest.

    I didn't think sunscreen was so important until I joined this forum. Now I am religiously using it to prevent UV exposure. My quality of life is getting better. I don't ask, "why me?" anymore. I ask, "What more can I do to battle this enemy and stay on top of it. Taking my meds is vital. If you ever get where you can't afford them there are ways around that too. Please take the prednisone ASAP.

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    Hello there Franzee! I have been living with Lupus for over ten years now, and I am only 25 years old. I recently had to have an emergency appendectomy, and that maxed out my insurance coverage for the years, so I basically don't have insurance until next January. I called the local Lupus Foundation of America chapter for my state, and told them what my situation was, and they referred me to the medical research foundation for my state. The treat all lupus patients w/out insurance for free. Yes, they do trials on new meds, but that is not forced on you. Also, I joined the Lupus Cohort where I donate my blood for research(but no med testing). Maybe you could call the LFA and see if they can help you, or direct you to someone else who can help! I am sorry you lost your job, and you are not feeling well. I have quit jobs before because my body just couldn't take it. Please don't feel alone, you are certainly not alone! Have you thought about applying for disability? That would give you some monthly income and insurance, too. In the mean time, take it easy, don't allow yourself to feel a burden to anyone, or feel useless. Every day you wake up, God has you here for a reason. I know that for me, those feelings make my disease a lot worse. It's almost like it fuels it. Know your body's limits. Try not to over do it. Pray, for there is power in prayer, and I will be praying for you too! If you have any questions, concerns or just need an ear, lemme know! Please keep us updated!!!

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    Welcome to WHL! I don't understand the lowering of the plaquenil either but yes, DO take the prednisone! You WILL feel better. I don't have any medical advice but I know money is super tight for way too many these days. I see that you aren't married and that could work to your advantage. I don't know what Colorado guidelines are but perhaps look into food stamps and a program we have in Montana is call LIEAP which stands for "low income energy assistance program" which helps pay heating bills in the winter. That and food stamps can help free up $ which you could use to help medical costs. Being single, they'll go by your income only but be careful, in some states there is "common law marriage" which in legal terms means 2 adults of the opposite sex cohabitating for a minimum specific amount of time in which then they'd use your boyfriend's income as well when considering you for those programs. I found that out when my daughter lived with her boyfriend for awhile here in Montana.
    Take it one day at a time, one step at a time. Celebrate the little victories and good moments, breathe through the bad.
    Keep talking to us, we are here for you.

    ((((((hugs))))))
    "I'm going to get healthy or die trying"

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    Hi Franzee,

    The first thing I'm going to say is please please please take the prednisone!!! I know so many people are always worried about the side effects, but more often its the side effects of not taking it that you will need to worry about. When you're in a flare the disease will start attacking some or most of your organs (if you have SLE) and thats where the problems begin. If you can stop this, or slow it down by taking the pred, then even with the side effects its probably a smart move. I've been on pred for the last 5 months and im down to about 4mg at the moment. In my flares i usually am on 25mg for a couple of weeks. Not great to be on a high dose but it appears to be the only thing that helps. Being on the pred for me has cut my disease activity down so much that in the past 5 or so months i dont even feel like i have any symptoms! (fingers crossed i havent spoken too soon). I'm sorry about the issues you have with the medical system in America and unfortunately I cant say i know what you're going through but if you have a doc that is willing to prescribe you medication to help when youre having a flare, then you are one step ahead of the disease...if you take the meds
    Best of luck!
    Diagnosed with SLE and Antiphospholipid Syndrom - June 2010

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    I have to agree with those before me. Take the Prednisone! I know you are worried about the side effects but at that low of a dose it shouldn't be too terribly bad. The reducing the dose of plaquenil is something that I don't understand maybe he has a reason that I don't know about. I take 40 mg of steroids a day which is down from the 60 I was on at one time. Steroids are one of the few things that helps with flares. You really should follow your doctors advice and take it.

    As for the doing too mucb.. you have to learn to say no because your body is now paying for saying yes. Try to rest, stay away from windows and the light that shines in the room because of them. If you do that and take the steroids you should be OK after a few days. If not go to the ER. I have no insurance and that is what I have to do. I have a doctor that I see who charges 70 bucks a visit but for major things the ER it is. They will send someone in to ask you all kinds of questions trying to find out if there are any programs that can help you with payment. I don't fit any of them so the bills still come. I do what I can do and nothing more.

    Take care of yourself and let us know what you end up doing
    Mari

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

    ~Winston Churchill~







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    Franzee, I also live in Colorado, so I looked up a few resources for you. Maybe some of them will pan out?

    Lupus Foundation - offers financial assistance to those who qualify: http://www.lupuscolorado.org/offer.htm#financial
    National Jewish Hospital runs clinical trials for lupus. If you are in a clinical trial, treatment is generally free and sometimes they even pay you for time and travel: http://www.nationaljewish.org/programs/directory/lupus/
    The State of Colorado has a website that will help you figure out what medical assistance programs you might be eligible for: https://peak.state.co.us/selfservice/
    This site lists 6 FREE medical clinics in Aurora: http://www.freemedicalsearch.org/cit/co-aurora

    I am in agreement with everyone else about the prednisone. Your disease isn't going to get better without treatment, and 5mg of prednisone is probably not enough to give you much in the way of side effects - but it could make you feel better. I notice a difference within a day if I take prednisone. Plaquinil takes months to start working. If you do go back to that doctor, you might ask why he lowered your dose. Most people have no side effects, and it made a huge difference for me in terms of sun sensitivity.

    You know, I hate it when I'm feeling down and someone comes along and tries to blow sunshine up my backside. Having said that, I am going to point out that you do have some big things working in your favor: First - you have a diagnosis and have been started on treatment. Lots of folks here live in limbo for years with no diagnosis but too sick to function well. Second - your boyfriend is standing by you. That's pretty cool. Third - you have a large, loving family that isn't running away from your diagnosis. Granted, they aren't helping either by asking you to babysit and wait at bus stops - but I bet if you let them know that the sun makes you sicker they will find a way to get the kiddos taken care of. May I suggest, as the mother of a daughter with many chronic illnesses, that you go hang out with your mom when you are feeling down. She obviously wants to be there for you, and she would probably be very grateful if you shared what is happening with her. There are several lupus support groups in the Denver Metro area, maybe she would go to a meeting with you.

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    Thank you all! I know sometimes I can be a little hard headed but I shouldn't mess around when it comes to this. You all have years of experience, and I'm happy I can come here for guidance. I started taking the prednisone today so I shall see how this goes. I really have to learn how to worry less. Oh.....i noticed my doctor didn't put refills on the prednisone. Do I not have to taper down from the 5mg or did he just forget? He told me to take them for a month. When do ppl usually start to lower dosage?
    Well thanks again! I appreciate yall taking the time to read and reply!! *HUGS*
    Diagnosed with Lupus July 19, 2011 Lupus nephritis stage 3 and taking 20mg prednisone, IV Retuxan and citoxan once a month.
    Vitamin D 50,000uI,1000Mg cellcept,5Mg lisinopril,200Mg labetalol,325 Mg ferrous sulfate

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    Quote Originally Posted by Gizmo View Post
    Franzee, I also live in Colorado, so I looked up a few resources for you. Maybe some of them will pan out?

    Lupus Foundation - offers financial assistance to those who qualify: http://www.lupuscolorado.org/offer.htm#financial
    National Jewish Hospital runs clinical trials for lupus. If you are in a clinical trial, treatment is generally free and sometimes they even pay you for time and travel: http://www.nationaljewish.org/programs/directory/lupus/
    The State of Colorado has a website that will help you figure out what medical assistance programs you might be eligible for: https://peak.state.co.us/selfservice/
    This site lists 6 FREE medical clinics in Aurora: http://www.freemedicalsearch.org/cit/co-aurora

    I am in agreement with everyone else about the prednisone. Your disease isn't going to get better without treatment, and 5mg of prednisone is probably not enough to give you much in the way of side effects - but it could make you feel better. I notice a difference within a day if I take prednisone. Plaquinil takes months to start working. If you do go back to that doctor, you might ask why he lowered your dose. Most people have no side effects, and it made a huge difference for me in terms of sun sensitivity.

    You know, I hate it when I'm feeling down and someone comes along and tries to blow sunshine up my backside. Having said that, I am going to point out that you do have some big things working in your favor: First - you have a diagnosis and have been started on treatment. Lots of folks here live in limbo for years with no diagnosis but too sick to function well. Second - your boyfriend is standing by you. That's pretty cool. Third - you have a large, loving family that isn't running away from your diagnosis. Granted, they aren't helping either by asking you to babysit and wait at bus stops - but I bet if you let them know that the sun makes you sicker they will find a way to get the kiddos taken care of. May I suggest, as the mother of a daughter with many chronic illnesses, that you go hang out with your mom when you are feeling down. She obviously wants to be there for you, and she would probably be very grateful if you shared what is happening with her. There are several lupus support groups in the Denver Metro area, maybe she would go to a meeting with you.
    Thank you for the helpful info you gave me. This is what I needed. Thank you =D
    Diagnosed with Lupus July 19, 2011 Lupus nephritis stage 3 and taking 20mg prednisone, IV Retuxan and citoxan once a month.
    Vitamin D 50,000uI,1000Mg cellcept,5Mg lisinopril,200Mg labetalol,325 Mg ferrous sulfate

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    Quote Originally Posted by FranzeeSmith View Post
    Thank you all! I know sometimes I can be a little hard headed but I shouldn't mess around when it comes to this. You all have years of experience, and I'm happy I can come here for guidance. I started taking the prednisone today so I shall see how this goes. I really have to learn how to worry less. Oh.....i noticed my doctor didn't put refills on the prednisone. Do I not have to taper down from the 5mg or did he just forget? He told me to take them for a month. When do ppl usually start to lower dosage?
    Well thanks again! I appreciate yall taking the time to read and reply!! *HUGS*
    Did he tell you to make an appointment in a month? If so that is why he didn't give a refill because he wants to talk to you and see how it is going. I would ask him why he lowered the Plaquenil though. Once he finds the right amount he will give you refills. That is how my doctor does it.

    As for the worrying..we all do it at one time or another.
    Mari

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

    ~Winston Churchill~







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