After reading Michele post, I got to thinking about the way I was treated......There is no way she should have been treated that way....Most of us has been there, over weight and feeling like the world is against and most of the time they are. We know how we feel they don't. We know when we should lose a few pounds.
I had a great life, worked 2 jobs husband had a good job, good insurance, maybe been to a doc. 7 or 8 times in my life besides haveing kids. then I turn 40 and fell apart, I woke up one morning and could hardley get out of bed, went to doc. done blood work told I had RA. put me on Salalate, did fine till about 5 weeks later, my legs starting tingleing and felt numb, call doc. oh it just RA don't worry about it. next day it was may hands and feet and they hurt, was told again it just the RA. That night and the next day I got a burning in my arms and legs, so I called again and was told it was RA and the doc. said I would have to learn to live with it. I blew up I told them That I wanted to see the doc. They told me he was very busy. I hung up and called every doctor in town and no one wanted another doctors problems they told me I would have to see him. So I called and was told he had nothing open, I was on fire, you would only understand the pain if you've been there. (nerve pain) I scream at them I told them I wanted to see a doctor. my doc. wasn't in so they made appointment with the other doc in the office for the next day. He said I had a ciculation problem to take Vit. E that there was no pain meds. that would do anygood. So I went home crying. 2 hours later I started to get up and my foot floped, it just hanged, I had no idea what happen or what to do it was Fri. night and no where to go. the next day the other foot dropped. The pain was so bad. By mon. morning it was more them I could take. I call doc again and got same ran around, I started screaming and told them I wanted to see the doctor that I didn't care how busy he was so they said they would work me in the next day. When I got there I was trying to walk with curthes and my feet was dragging, my hands were useless I couldn't even tear bread apart or open a door, push a button to turn tv on. I was helpless. everyone was looking, coming out from the back looking they could'nt believe it. The doctor kept telling me how sorry he was, said he never had a RA patient to do that before. He put me in wheelchair and sent me to hospital for test and I got no relieve till he sent me to a neurologist, who put me on 95 of prednisone and sent me to The RA doc. who put me in hospital for all kinds of test. and come up with RA. He said that the blood vessel had swollen and press against the nerves. He had a big name for it. I got part use of my hands and legs back, them it happen again. I called RA doc. this time and went to the hospital where they put prednisone in with an IV. and put me on cytoxin a very bad drug. Today im back up and moving but have a lot of nerve damage and can't do everything I want to do but thank the LOrd for what I can do.....The point to all this is never give up...scream. holler do what you have to do to get help...Doctors are a bunch of jerks...I shouldn't say that because there is some doc. out there who cares my RA doc is one of them.
WOW, what a story Rusty! And a good example too, so thank you for sharing!
Regards,
Melly
Hi Rusty,
Thanks for sharing. Sorry it was so rough for you. My heart goes out to every story I read. I think some because I can relate and some because it could be me or any one of us any morning!
Thanks for sharing your story, Rusty. Tis a shame. Wow, that is terrible. I'm glad you are better now. I hope your doctorRusty,
I'm so sorry that you went through all that just to be heard and have something done. Just like Michelle's case, there seems to be a real lack of caring and empathy in these doctors. Let them walk just a minute in the pain that those of us with RA can and do face on a daily basis and then see how much screaming they do. I feel fortunate in 2 ways reading these stories. One because I was born having this illness I never knew anything but pain. I know this must sound silly to say. My point is it's something that I'm so used to that I don't really notice it. Two because I've been extremely fortunate in the doctor department and have yet to come across one who is a jackass.
I'm outraged that any of you have to go up against YOUR doctor that you're paying for to get the help needed. I can't believe that there are so many doctors with complete lack of concern for their patients. What the heck are we paying these guys for?
Hugs,
Steph
Dear Rusty, WHAT in the world do they think we have? I often wonder if they all think we are making this up! Honestly, you went through hell and mostly because no one (including the trained professionals) would listen to you.
I had a similar experience after major surgery. I was in so much pain, but everyone thought it was because of the heart operation, and everything they did to me (your arms are layed out beside your shoulders for 5 hours), and some other complications (like a pricked lung), but I knew the difference between that 'pain' and the RA pain. I knew I needed the mtx and as it turned out the REMICADE in huge doses. It still took for ever and I'd go into the heart doctor and she would say 'what's the matter with you'? You are catatonic or some such word and I would say 'I NEED' RA drugs to stop this pain. It took months to sort out because of the healing process and the doctors weren't talking to one another....a nightmare.
Finally, with Prednisone in March (the operation was in
December!) I began to feel like I would survive. Looking back I could kick a few doctors. I couldn't even walk until the Pred!
We need some resource to help us with what to do in these cases. Thanks for sharing your story, perhaps others will know what to do and say if this happens to them. RA is scary stuff. Lynda
OMG Rusty! The doctor's behavior was CRIMINAL!!!!!! Have you spoken to a lawyer? This doctor needs to be reprimanded and possibly have his license revoked. What an ass.That's a horrible story Rusty!
Thank goodness I've never had to deal with doctors like that. I'm also very greatful that the disease hasn't progressed to that point either. I can only imagine your stuggles.
Glad to hear you are doing better than you were during that point.
Wow, Rusty. That is a heartbreaking story, and mind boggeling too that you would have to go through all that before you could get help. I'm glad you're able to get around now, and I hope you'll continue to improve.
Linda
If you are ever in the hospital, make sure that you have an friend or relative around most of the time, who will make sure that care is good and fight for you if it is not.
Take care,
Lynne
I am so saddened to hear that so many of us are treated this way. I don't think my mental state will ever be the same. Its not all from this last appt, but it seems to be an accumulated effect. We go from dr to dr to dr trying to find someone to just LISTEN to us, to believe us, you wouldn't think that was such a huge thing to do. Have a little compassion for crying out loud! I think the thing that upset me the most was the fact that this was the one dr who I always counted on. She may not have always had answers but she would at least listen and point me in the right direction. She was like my last thread of hope in the medical field and I feel she kicked me in the teeth while i was down.
Michele
You need to eat. I understand the need to drop the weight but starving yourself is not the way to do it. The dizzy and shakey can be coming from low blood sugar. You already have health issues don't compound it.
If you aren't smart about this you will be playing into your doctors hand by proving that its mental issues causing your problems. Eat healthy and aim for at least 1200 calories a day. Keep a food diary so you can show them you are working on the weight.
We all know something is wrong but now is the time to react logically not emotionally since all the doctors seem to be focusing on your emotional side.
did you get a chance to get over to the about thyroid site
Buckeye..........that is a very smart post. Michele, please listen to this sensable womenI agree with buckey, not eating will not give you lasting resualts. Start slower. Try taking one thing out of your diet at a time. I don't know what your guilty pleasure is but try substituting it with something healthy. My guilty pleasure was Mountain Dew. I was totally addicted. I could easily drink 6 bottles a day. This put on the pounds slowly but surely. I decided when I got RA to lose the weight because they say that even a 10 lb lose can make a big difference on your knees. So I stopped the sodas. Now if I have a sugar craving I go for fruits. On rare occassions maybe a fruit smoothie.
Slowly I got the rest of my diet under control and lost the weight.
Good luck.
Rusty, I am so sorry you went through such hell.
I also have struggled with doctors and I work in the medical field! Your right about having to stand up for yourself and scream if necessary to get what you need. It is a shame, but it is the squeaky wheel that gets the grease.
Thanks for sharing your story.
Marybeth
Ok mom! I will promise to eat at least a little something at least three times a day. I can't say I will eat a full 1200 calories but I guess thats probably not hard to eat that much. I am just so hurt and I just cant even stand to look at myself right now. I was unhappy about being heavy before but now I am down right disgusted by it, probably because I feel its getting in the way of my health care. The dr I saw Monday has in my chart that less than two years ago, I was 136 pounds! At 5'8 that was pretty thin, a healthy thin. Michele you don't eat enough you wont lose weight your metabolism will shut down and hold onto every calorie you put into your body. If is your thyroid or other hormone levels that are causing all of this starving yourself will be even worse.Hi Michele. Of course I agree with everyone else. That had to just break your heart, to have the one doctor that you trust, treat you so badly!
We see doctors so often, that they become important in our lives. Not only as our doctors, but I think most of us feel the need to have our doctors understand us and we feel the need to have them approve of us. We want them to know how much we are hurting and to treat us as someone with some worth, who is in pain, and we are depending on them to help us...not to speak to us like an ill-behaved child!
I really think you should let her know just how bad she made you feel. You don't need someone to baby you, just to treat you with respect.
I forgot, are you taking any antidepressants? I know that many of us are, including me. I didn't think I needed them but my doctor was right; anyone who has chronic pain is likely to have some depression.
Try to eat a little meal 6-8 times a day and drink a lot of water. I keep my bottles of water in the freezer, so they're always ice cold. You can eat cereal, fruit and coffee, then a few hours later, have some more fruit or juice and maybe some whole wheat crackers and a little cheese. Then a couple of hours later, maybe a salad and half a sandwich. You get the idea. Just kind of graze all day. You'll be surprised how your metabolism speeds up. Don't for get the water all day long!
But starving yourself is the worst thing for you! Please take care of yourself. We need you!
Hugs, Nini
Michelle,
Nini is absolutely correct. Grazing does increase your metabolism which in turn helps you lose weight. Good advice Nini!