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Thread: Sicker and Sicker

  1. #1
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    Default Sicker and Sicker

    No matter how I phrase this, it will seem dramatic so I apologize in advance. Since June of 2010 I have gotten progressively more ill. When I only had fibro, I thought that was the end of the world because it limited so much of what I could do due to the pain and muscle soreness. When the Lupus set in, the fatigue was a million times worse, the pain increased substantially and most activities were out of the picture because my hips hurt so much. And then there was the constant sickness. I could guarantee plenty of time with the flu every month and it was the bad flu - stomach issues, sleeping all the time, all to the extreme. In May I was well for about five days. Right now I sleep at least 15 hours a day, I can't eat (no appetite), I can barely walk because my hips hurt so bad it makes me physically ill. My mother was in the hospital with blood blood clots all last week and I couldn't go see her. It wasn't because I had the flu. It was because I didn't have the strength to pull myself together and go. Since I cut the prednisone (per every doctor's instructions) I can't breath. I called to get a doctor's appt. because I was da#m tired of all of this and I was put on an antibiotic and a large increase in prednisone. Hmmm.

    I've done my x-rays and blood tests for the fancy doctors and look forward to seeing if anything shows up. I really, really want to try the medicine for RA. Honestly, I want to try anything! My ability to hold up under all of escalating illness is failing. Can you imagine if all of this continues to get worse? I'm frighteningly close to not being able to walk and taking care of myself and my son is almost impossible. Thank you Lord for delivery food!! We have stairs in our home and if I don't get out of this house soon, I'm not quite sure what I'll do. I completely run out of air and my thighs are on fire. Yes, I'm out of shape but I have no way to get into shape.

    Again, I'm sorry to cry in my soup, so to speak. I'm scared guys. Whatever this is, the progress is fast and furious and tremendously painful. I look at my bed (to take a nap) like a poor person would look at winning the lottery. I miss my family and friends and taking my son out to do something. I've begun to itch from the sun, yet another hellish addition to the rash.

    Please keep me in your prayers. I would appreciate it so very much -- Susan

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    you don't need to apologize, Susan. We are here with you and we understand. If you need to have a good little cry, do it. We don't mind. When you're ready for cheerleaders, we'll be here to do that with you too. *praying hard for you*
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    I wish things were better for you Susan. One of the worst things about all of this autoimmune crap, is the fact that it first causes us to get out of shape, and then it will not allow us to do what we need to do to get back into shape. You are not crying in your soup. You are dealing with an inherently difficult and fundamentally unfair situation. You don't need to apologize for anything.

    You feel like it's coming down to the wire, and that your situation is getting close to being out of control. This can happen to be sure, but what I have seen so many times over the years is people who finally do get the right diagnosis and treatment, right when things seem to be at their worst. I also know people who wake up one morning and out of the blue discover that the escalation and progression of their disease has slowed down, and even stopped. Then the next day, the pendulum slowly begins to swing back in the good direction, and many times stays there. Autoimmune disorders are unpredictable not only in regards to when they will affect us in a bad way, but also when they inexplicably recede, and go away.

    There is a combination of treatments that will work for you, but waiting for and finding that combination can test the toughest of souls. Take it one day at a time to the best of your ability, and try to stay focused on the next appointment, as it could be the one that finally finds a course of treatment that works for you.

    There's still plenty of hope to be had,

    Rob
    Last edited by rob; 06-01-2011 at 01:59 PM.

  4. The Following 6 Users Say Thank You to rob For This Useful Post:

    Gizmo (06-01-2011), Nonna (06-02-2011), Saysusie (06-03-2011), serand4 (06-07-2011), steve.b (06-02-2011), tgal (06-01-2011)

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    Hello Susan,

    I am so sorry to hear how you've gone down hill, since we last spoke and i do feel for your mom also being in hospital with clots as we both know that's no fun at all.

    Your feeling all the same symptoms as i do with the hips and it's dead painful when they lock, i'm just lucky none of it as interfered with my weight and you can't really do much if your like you am.
    It is such a painful waiting game but i have read where a few member's have picked up with the right medication like Rob said.

    I'm more or less house bound like yourself and i only stated a few days back you feel like your trapped in a bubble but it's how the disease progresses with some and we seem to be them besides other member's.

    Susan you are deeply in my thought's mate and my love goes out to you.

    Hugggssss my dearest friend and please keep we updated beside susan. xxxxxxxxx

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    Hi Susan,

    I too am so sorry for what you are going through. I remember being in the place where I thought I was going to have to die because to make someone see what is wrong with me. Cry all you want. That is what we are here for. Sand and Rob gave some great information. I simply wanted to stop in and give you a virtual hug and let you know that we are still here for you.Don't give up. Tomorrow might be the day
    Mari

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

    ~Winston Churchill~







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    Susan,
    I really feel for you and your family. You've got loved ones in 2 other generations who need you, and just taking care of yourself is overwhelming. Rob is right about keeping hope alive. You have to keep reminding your doctors about your condition, keep researching, love yourself and find something to be joyful about every day. That might just be that the dog didn't have an accident on the rug, or your Chinese takeout had an extra fortune cookie, or your son snuggled up next to you to read.

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    Oh Susan my heart is heavy for you. Everything Rob said is right on. For me the meds helped a lot. It was a long haul until I got the help I needed too. I cried last night about the loss of my slim strong pain free figure again. In the fall I had gotten so well I was hiking7.5 miles on the Appilation trail! Before that I could hardly walk. Hope dear Susan and I will pray. (((hugs))

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    it is hard when the body goes out of kilt. doctors will eventually get your medicine balance right.

    hold on to the knowledge that it will be better.. not as it was, but better than this.

  10. The Following 2 Users Say Thank You to steve.b For This Useful Post:

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    Everyone has said all the encouraging things you need to hear, so know this- I am praying for you, sending good thoughts your way and a lot of mental hugs

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    As Nonna mentioned, our members have given you encouragement, kindness, and wonderful advice. I just wanted to let you know that what Rob and others have said is very true; there is always hope. Hopefully you will get the right combination of medications that helps to alleviate some of your symptoms and to help with your fatigue. I know that it is important to exercise in order to also help combat the fatigue and to keep our bodies strong, but with the pain and the debilitating fatigue, exercise is a hard thing to accomplish.
    At one point in my illness, my exercise routine was merely lying in bed and moving my legs back and forth..opening and closing my arms and sucking in and popping out my stomach. But, believe it or not, just the act of moving is, itself, exercising. You start off very, very slow and, as your meds alleviate your symptoms, you add more. Don't be hard on yourself because you are not able to do anything major..most of us aren't able to. But what we do is we always try to do what we can and we celebrate each accomplishment. We are here to help you in any way that we can and as much as we can, and we are here to celebrate with you when you succeed - regardless of the size of that success.
    Welcome to our family..I am so glad that you are here.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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