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serand4
06-01-2011, 01:22 PM
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

SandyR
06-01-2011, 01:50 PM
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*

rob
06-01-2011, 01:52 PM
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

Peridot20_Gem
06-01-2011, 02:41 PM
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

tgal
06-01-2011, 02:44 PM
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

Gizmo
06-01-2011, 06:25 PM
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.

lovedbyHim
06-01-2011, 10:37 PM
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))

steve.b
06-02-2011, 12:42 AM
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.

Nonna
06-02-2011, 02:43 AM
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

Saysusie
06-03-2011, 08:36 PM
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

serand4
06-08-2011, 03:39 PM
Many thanks to all for your kind words and useful advice. I have started to do a little bit of extra things each day and believe I feel a bit stronger. Tonight I will start will 5 minutes on the treadmill. Sounds silly but five turns to six and so on... I don't know where I wrote this, or if I wrote this - I am as foggy as London these days! - but my mother came down with several blood clots just a day after I was out of the hospital and then the day after she got out of the hospital, my father, a bad diabetic, took a terrible spill and ended up in the hospital. Caring for them forced me to move my rear end and also allowed me to give back to them after all they have done for me. Everyone is healing but it's very hard to face the fact that one's parents are getting closer to the end of their life.

The "super docs" say I do not have the numbers (those darned numbers) for lupus or RA but I'll tell you what, if I had any more of the other symtoms, I'd be the poster child! I intend to keep following up until we figure this out. I've spent another several weeks on and off with the stomach flu and eating is something I have to get very creative with. I haven't had an appetite for two weeks. The weight is coming off but I'm living on Sports Drinks and the occasional piece of toast. They've looked in my stomach but there's nothing particularly unusual. I'm beginning to think I'm losing my mind. But, before I do that, I'll call my super docs and my gastro doc and see if they have suggestions.

Again, thank you for all your kindness and advice. Whatever would we do without each other? xoxox

tgal
06-08-2011, 04:25 PM
Just remember that we are all here for you. Take care of yourself as best as you can and keep fighting for an answer no matter what is it.

steve.b
06-08-2011, 09:11 PM
we are here, for you.
enjoy the time with your parents.
it may not be easy, but the reward is worth it.

my thoughts are with you.

serand4
06-10-2011, 04:47 PM
I am thrilled to report that I'm feeling a million percent better! The only thing I can think is that #1, I can't drink soda since that's something I've had to cut out since my stomach hurt when I drank it, and # the Vitamin D mega version I got from the doctor. Everyday has shown improvement and I've been able to keep up with housework and stay awake longer during the day. I still sleep a lot and there's still pain but not like before. Maybe it's the nature of this disease that it comes and goes. I don't care, as long as I keep getting better. I wanted to kill myself before (I wouldn't have because of my son and parents) from the pain the type of life I had to live but this gives me such hope!

Thank you all again for your support!

giggle
06-10-2011, 06:57 PM
When I read your initial post I knew exactly how you feel/felt. I've been dealing with something unknown that has been progressing rapidly. I have had to soldier through it to bring in the money regardless and have ordered myself a walking stick... after almost falling down stairs at my daughters school because along with pain in all my joints including my hips, there is also stiffness and weakness. It comes and goes but you can probably imagine my state of mind... I turn 30 in a few days and I am celebrating it with a walking stick.

Anyway... now I read your update I am very happy for you and it gives me hope as well... that something simple and easy to remedy may be behind my misery and that its just a matter of weeks before my doctor discovers it and I start to feel better.

I am so happy for you : ) You sound on top of the world and its brought a tear to my eye. Congratulations. ((hugs))

Linda From Australia
06-10-2011, 07:05 PM
I am thrilled to report that I'm feeling a million percent better!

I wanted to kill myself before (I wouldn't have because of my son and parents) from the pain the type of life I had to live but this gives me such hope!

Thank you all again for your support!
If you don't want to post anything when you are feeling down, you could message me. If I don't reply soon enough for you, keep messaging me until I reply. Sometimes I don't take my laptop home from school. You don't need to suffer on your own, especially when you don't have anyone to talk to honestly about how you feel. Not only will your parents and son miss you and need you, we at WHL also need you to give us advice on how to cope in difficult situations.

Keep in touch

serand4
06-13-2011, 06:36 PM
I have so many people that I love, many on WHL, and of course friends and family so I would never harm myself but as so many of us know, the pain and frustration can drive you literally crazy. I've wondered at times if I'm having a nervous breakdown. And to have all the symptoms of Lupus and many of RA and then to be told it can't be due to numbers, again, very frustrating. But today I ran errands, chatted with fellow shoppers and have big plans to cuddle up with my son for our TV show Pawn Stars. Tomorrow I meet with my pcp and I have a lot of questions for him. I was pretty crazy in the hospital last time -- I mean, nutty, not there, hallucinations, scared to death that my brain took a left somewhere in Cleveland.

Anyway, I'll keep you posted on what the pcp says. He's usually very honest, kind, but honest. Maybe I'm just nuts and the pain is all in my head but it's going to take a politician to convince me!

Thanks again for your never-ending kindness and support. You get lots of extra stars in heaven for that!! xoxox, Susan

Gizmo
06-13-2011, 07:50 PM
When I read your initial post I knew exactly how you feel/felt. I've been dealing with something unknown that has been progressing rapidly. I have had to soldier through it to bring in the money regardless and have ordered myself a walking stick... after almost falling down stairs at my daughters school because along with pain in all my joints including my hips, there is also stiffness and weakness. It comes and goes but you can probably imagine my state of mind... I turn 30 in a few days and I am celebrating it with a walking stick.

Giggle, maybe you can put balloons and streamers on your walking stick to celebrate your birthday? It stinks that you are so young and going through this, but maybe it won't be a permanent attachment. I hope you find a fun way to celebrate your birthday and turn your stick into a fashion accessory.