Sorry, haven't been posting much
#309521 - 06/21/07 10:59 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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but I do read most everything and enjoy all the pictures!! I just have been struggling. I saw the pain doctor last week. She told me basically this is your life, get used to it, deal with it. She is getting me a handicap sticker for my car and wants me to get a scooter and keeps pushing for me to try for disability.
She upped my pain meds and we are trying a few new things but its mostly to make me more comfortable. They just don't know what else to do. I do have an appt with the rheumy department at the University of Michigan the end of July.
I also did go back on the lexapro. I was trying cymbalta but it literally made me suicidal, it was really very scary. The lexapro has taken the edge of my depression. Right now, I am just trying to manage to get through each day.
My hands are really bad so I can't type too much but just wanted to poke my head in and wave! 
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Taking it one day at a time.....
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So sorry to hear this Michele. I can't imagine how it must feel to be in so much pain and have every Dr. say they can't help you. I hope UofM can help. Something has to work! Just don't give up!! Hopefully you can get that disability and get some relief from some work. I'm praying for you.
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~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.
 
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I'm sorry to hear that your doctor is just telling you to deal with it. I guess that's what you have to do, but it's still something that's disheartening and depressing to hear!  I hope the lexapro helps in some way. I didn't know you were trying cymbalta, but your experience with it sounds terrifying!
Do you have a support group of some kind near where you live? Friends to stop by and help out or something? Anyone or anything to help get through those bad days?
Well, I'm glad you checked in today - I hadn't realized you were struggling so much (still!).
Big, gentle hugs.
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Well, I have my boys, a little shih tzu and a shih poo, don't think I could get through the day without them!! I really only have one local girlfriend left and she lives about 45 minutes away but we get together about once a month and talk every couple of days on the phone or via email.
Yes, the cymbalta turned into a nightmare for me. Looking back, its a wonder I made it through without hurting myself. Scary stuff.
I guess the visit at the dr's just really made me face up to this being a lifetime illness. Up until now, I had some hope that it would magically go away and I would have my life back. I think though the sooner I come to terms with it, the better off will be.
Thanks for the hugs
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Taking it one day at a time.....
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Thanks Mary. The everyday pain wears you down, both mentally and physically. I think the doctors are realizing that more than ever and thats why they are doing what they can to make me more comfortable. I really wish I could stop working but at my age, 36, it would be a very long battle for disability, even in my condition and we would end up losing the house and not being able to afford our health insurance. Will has been looking to supplement his income from his business but the economy is so bad right now here in Mi. 
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I'm sorry you are feeling this way. I truly hope that things start looking up for you real soon.
You are entirely too young for a scooter  Nothing like making you feel worse telling you that they think you should invest in a scooter. For heaven's sake!!! Now the handicap sticker isn't that bad of an idea 
I really hope the University of Michigan has some answers for you. How much longer can you suffer???? Hang in there and take care. I'm glad you switched meds! Whewww that must have been scary!!!
BIG HUGE HUGS FOR YOU!!!
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~~~Lisa~~~
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Hi, Michele:
I've been wondering about where you've been. I'm sorry that you're still in so much pain. Chronic illness or not, I do hope that you are able to go into a remission to provide you with some relief.
I'm sending lots of big, gentle hugs your way. I hope the Lexapro has you feeling better.
{{{{{Hugs}}}}}
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Christine
Those who can do; those who want it done better teach.
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Michele,
I'm not around much in the summer, but I saw this post and just had to tell you that I'm glad you gave an update. I'm so sorry the news has not been good. I think of you often and I'm always hoping there will be some kind of breakthrough and they will find out exactly what it is and what to do. I wish so much that things would get better for you. I probably can't really fathom what you go through, but just wanted you to know you are in my thoughts and I was glad to hear some news from you.
Laura
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Dearest Michele,
I'm still wishing for that magic wand... Darn Tinkerbelle wouldn't give me hers when I was in Disneyworld. As I sit here thinking about you, I want you to know I'm very proud of you. You go through more than anyone I know, yet you are still fighting. You're fighting for answers, to get better, to keep your mobility and sanity. Your strength truly does inspire me when I think I'm having a tough day. (Like today! My neck is out again, but I dragged myself through 9 hrs at work).
I'm really sorry the cymbalta made you feel suicidal. VERY SCARY. I was on anti-ds and they made me have panic attacks - this was back when I was in my late teens, now they know not to give them to teens - too late for me! I sure hope the lexapro continues to help you.
Are you having any relief with the alternative therapy? The acupuncture and vitamin treatment. Although I worry about the vitamin one after your last reaction! I keep thinking of options and looking them up, but haven't found anything more to help you, I'm sorry.
Sending you gentle hugs, lots of love and support, always.
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up! 
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I'm really sorry to hear this. Just telling you to "get used to it" isn't terribly sympathetic or helpful. But it sounds a lot like a typical doctor to me. I am glad you are getting through each day... and I wish for you days without pain soon. If not, I wish you find ways to make the pain easier...
I imagine this must feel terribly frustrating. Especially since you are such a good person who doesn't deserve this at all.
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Hi sweetie,
Well, life can just suck a**, can't it? I feel terrible for all the things you have to put up with. I know it must seem endless now, but keep hope. When everything else fails us, we can still have hope. And that gives us strength.
And now for the stupid joke part to make you smile...I hope.
What kind of bees make milk? (This is one of my really stupid favorites.)
Scroll down.
Boo-bies 
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***********************
If you're not dead, you've still got time.
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Oh Michele...I've been thinking about you and wondering how you've been doing. I'm so sorry you're having such a hard time. It's terrible that doctors just aren't very sympathetic. How frustrating for you. I sure wish there was something I could do to help.
BIG HUGS to you!!
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Flipada - IBS-C "It's a gas, gas, gas"
**Lauren**
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You know we love you and are here for you! Hang in there and I admire you for being such a strong woman. 
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Taking it one day at a time.....
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Yes, its very frustrating. Hopefully the drs at U of M will have something a bit more helpful to add!
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Taking it one day at a time.....
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boo-bees, Love it!
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Taking it one day at a time.....
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I am a firm believer in Karma and I often wonder what the hell I did to deserve all this??!! Aw well....Less pain and some energy would be WONDERFUL, can I get an xl order to go please?!
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Taking it one day at a time.....
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We agreed no more vitamin infusions at the moment! After spending 8 hours puking and days of foul smelling urine and sweat, not in any hurry to do that again. Apparently my body doesn't want or need them so....The acupuncture helps me stay calm and I think it does help with my general overall sense of wellbeing. Hasn't helped much with the pain or anything else yet but my chi is still very blocked, I have VERY stubborn chi says the asain woman in a very heavy accent!!
I do feel a bit better mentally, much more stable since going back to the lexapro. I am sorry to hear you had a similar reaction when you were younger. Very scary stuff indeed.
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You always have kind words for me and I really appreciate that!
I hope you are not round much because you are off doing some fun summer stuff?!
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People with ra and the other stuff I have can and do go in remission so hopefully, one day soon, I can report that I am one of those people! Its just been a really LOOONG three years!
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I definitely was not ready for the scooter idea. Although, if I ever get some energy back, enough to actually DO things again, it may be a good idea. I mean, if I had the energy, right now, I can not physically do things like go to the park or the zoo. Even going to the concert a few weeks back was WAY too much walking for me, my feet and hips swelled up even more and it took a lot of enjoyment away from my evening.
I will give it a while to ponder it. I am definitely getting the cripple sticker as I call it for parking, just that extra little bit, say when having to get a few groceries will help.
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This is quite a list!! So far, I am CURRENTLY dx with, in no particular order:
RA (rheumatoid arthritis)
polyrheumtic arthritis
migraines
ibs
costochondritis (inflammtion in chest)
tendinitis
bursitis
tmj
adrenal exhaustion
borderline high blood pressure (from steroids)
fibro
multiple myofascial muscle con strictures
reflex sympathetic dystrophy (aka complex regional pain syndrome)
lymphatic problems
depression (DUH!)
habitual abortor (I HATE that name, it means I can not carry a baby, most likely due to autoimmune diseases
neuropathy
Well, that all the titles I can think of at the moment!!
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I think it's a good idea. I think doing whatever makes your daily activities easier and allows you to rest your body is important and it might actually help you in the long run. I'm thinking of getting a cane, even though I'm doing better, because there are days when I really need that extra help.
Michele, have your doctors ever said anything to you about avoiding the sun/tanning/fluorescent lighting? This is the top recommendation from my rheumy, and even though you have RA, not lupus, maybe it would help you too, especially with the migraines. Just a suggestion. It's really helped me. I'm super pale, but not as sick! 
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Quote:
I am definitely getting the cripple sticker as I call it for parking
On the bright side, if you're out somewhere and you suddenly have to go to the bathroom, there's always handicap parking available. And if you get a scooter, you can make it like a video game. See how many people you can run down on your way, and everyone will forgive you for it, because you have the sticker and the scooter.
That's just what I would do. But then, I told my husband if I ever lose a leg, I want a wooden peg leg in it's place with a storage compartment built in. Okay...I'm weird.
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If you're not dead, you've still got time.
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I'm so sorry to hear you're having such a terrible time still. I'll keep my fingers crossed the U of M rheumy guys can help somewhat.
Do get the cripple sticker - it makes a world of difference just to be able to get a little closer and even more to have some room to maneuver when getting out of the car is a struggle.
I'd have trouble with the scooter, too, but I remember reading somewhere about a woman in a wheelchair who was shopping. A little boy in the store asked his father why "the lady" was in a chair and the father said it was so she could get out in the world. Maybe you can learn to think about it that way.
Take care and do let us know how you're doing.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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That is so funny!!!!!! I hadn't thought that it is a benefit for you or someone with IBS that you can park right and the door and get to the bathroom real quick!!
You are right though if you are at the point that you are missing out on things that you really like to do and the only way you can enjoy things is to try a scooter. I see people in the grocery store all the time with them. Just try not to hit like a huge display of Campbell Soups or something  
Hope your energy returns and you can get around again real soon Maybe the summer weather will help.
Take care and as always...BIG HUGS!!!
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~~~Lisa~~~
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Hi Michelle....
I haven't been posting much lately either. So sorry to hear you are having such a rough time. You are in my thoughts and prayers. I wish the docs could do something more for you. I've posted this here before, but though you might get some encouragement from one of my favorite quotes. It goes a little something like this:
"When you come to the edge of all the light you know and are about to step into the darkness of the unknown, faith is knowing there will either be something solid to stand on or you will be taught how to fly."
Take care! {{{{hugs}}}}}
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Hmm, have not heard of avoiding the sun before although most my meds make me burn even worse than normal so I don't go out with sunscreen on and than not for very long. I did tan a bit before i went to Mexico and didn't notice one way or the other but that has all faded away now so yup, pale girl here too!
I am just waiting for the signed paper from my doctor in the mail, than off to the secretary of state, I have to renew my license in person this year anyways, than I will have my cripple sticker!
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I forgot uveitis, it must have been mad I forgot it because it flared really bad this weekend. My eyes HURT are are BRIGHT red, nice look for an optician! Everyone keeps asking if I have pink eye!
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Just post that long diagnosis list at your desk so if people ask if you have pink eye you can say no but here's what I do have..... just kidding. I do hope you feel better. I read your posts often and your strength to get through this is an inspiration to others. Take care -
Debby
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Sorry to hear things aren't going so well, Michele. Hang in there! You're a strong woman! I'm thinking of you
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~~~~~~~~~~~~~~~~~~~~~~~~
Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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Oh, you are really having a tough time. Guess I shouldn't complain so much about my situation... I understand it's hard for you to post a lot because of the pain et.c. I was a bit worried since I didn't see any posts from you though, so glad to see you're hanging in there, even if it's just barely.
Big hugs,
Ulrika
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Taking it one day at a time.....
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