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courage
Pattye G. Snyder
Tuesday, January 22, 2008 at 01:10 PMre: courage
Hollybgroovin
Tuesday, January 22, 2008 at 01:24 PMThank you so much for the words of encouragement! I actually do work quite a bit with the Arthritis foundation. I will be team captain on my 3rd Arthritis Walk this May. I also try to spread the word on this disease as sometimes healthy people have no clue. This thursday I will be attending my first lunch with my chapter to see what classes they are offering, and that night I will attend my first Young Adults with Arthritis support club. Also as soon as my insurance will approve it I will have both hips and both of my shoulders replaced, scary...but I am looking forward to it as my rheumy says it will make a dramatic difference. Thanks again for the support and the words of encouragement. I wish you the best of luck and safe traveling! :)
replyre: re: courage
Pattye Snyder
Tuesday, January 22, 2008 at 01:57 PMYou're doing just what you need to do---A bouquet of congrats to you!!!! I've had both hips, 1 ankle and part of 1 foot replaced----scary, I know, but it's incredible what can be done---------wish other people would turn to "us" (Arthritis Foundation)----that's why we're there---I'm on both the state and executive boards---and volunteer for all events when I'm in country---hang in there------
pattye
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Livin' with RA
Colleen Zbuchalski
Tuesday, January 22, 2008 at 01:22 PMHi Holly,
You are too young to be so sick! I feel that way and I'm 55! I also feel helpless and hopeless at times but I try very hard not to stay on my "pity pot" for more than a day at a time. It's very hard to do. I look much younger ( thanks to OLAY!!) than I am and that causes people to say "But, you look fantastic". I HATE THAT! People doubt that I feel as bad as I do. I have RA, OA, AS, and on top of all that my spine is a mess with Degenerative Disk Disease !!! I have no children to inspire me but I have a great husband and dog who keep me going. Hang in there and call me if you want to talk. 973-601-3111
Regards,
Colleen Z
replyre: Livin' with RA
Hollybgroovin
Monday, January 28, 2008 at 06:56 PM"But you look fantastic," what a bitter sweet comment. I love the compliments, but it sometimes feels like they don't think I am sick or in pain because I look normal. Invisible disease stink don't they? I always get the little laugh followed by,"you're too young to have RA." I even got that one from a nurse when I was in the ER. It must be nice to be healthy and not know any better :)
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Hope
Perry Tomlinson
Wednesday, January 23, 2008 at 02:10 AMHang In there ,hope works in unusual ways ,meditate and belleive and you never no ,I hope for you. And plan to go with your boy at footie ,take your mind to where you want to be? take care
replyre: Hope
Hollybgroovin
Monday, January 28, 2008 at 07:00 PMThank you so much for the words of encouragement. I won't lose hope, and I believe I was given this disease for a reason. In my experience it seems that everyone with this disease are such strong people. I haven't tried meditating, but I paint alot and that keeps my mind in a good place. I hope all is well with you. Thanks again!
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drug plans
pharrell
Wednesday, January 23, 2008 at 01:49 PMgosh, I hate to hear you can't get Biologics.. I was dx 2005 at 47 could not belive the pain and swelling and felt like I had burning arrows in my shoulders - I could NOT walk from couch to couch. I begged for something more- prednisone and methotrexate and pain pills not enough and they overnighted me Enbrel shots on 11-9 and I took 1st one 11-10 2005 and two days later I could walk and sleep and breath! Awful disease. Today I take 1/2the methotrexate(was taking 11 pills on thurs-now 5), no pain meds, no prednisone and weekly Enbrel shots.THey told me i would never be off meds BUT I have cut way back except Enbrel and will see dr Feb! my goal is to be on 1/2 Enbrel by 11-2008 as I turn 50. There are drug plans-one involving montel williams?? Pal or something like that to help with costs yep it is $1000 a month-thank God I have ins./ it costs us $50/month. I have cut our wheat, white potatoes,coffee/caffeine, peppers and at least 1/2 of processed sugar- we don't buy it anymore but i will get a sweet tea. I hope you get some relief and comfort. I DO know how horrible this is for you.. Pam Harrell
replyre: drug plans
Hollybgroovin
Monday, January 28, 2008 at 07:06 PMMy rheumy wants me on Orencia and even with the prescription assistance plan and my insurance it will still cost me $840 a month. My husband will start a new job working out of state by March and he will be making enough for us to be able to afford the Orencia, and I am very excited. Meanwhile I have started seeing a pain management doctor who is treating me wonderfully. I am keeping my head up and expect to have some relief soon. Meanwhile I take methotrexate, plaquenil, voltaren, minocin, medrol once a month, avinza, and lortabs. I am glad you have had relief with the Enbrel, and I wish you the best!
replyre: re: drug plans
pharrell
Monday, January 28, 2008 at 10:10 PMoh, what state are you from?
I am in NC. Have you tried any of the diet/eliminations from possible food triggers? they say usually wheat, dairy and corn and night shade veggies will aggrivate RA. I am desperate to know everyones secrets to success in possibly managing this disease be it diet or whatever.thanks again pam
replyre: re: re: drug plans
Hollybgroovin
Monday, January 28, 2008 at 10:27 PMDairy (I am lactose intolerant) and red meat are my triggers, and I am from Oklahoma. I also take a maintenace antibiotic because my inflammation has never gone down and my rheumy thinks its from an active infection in my body that has never been found. I just love being the difficult patient :)
replyre: drug plans
Pam Harrell
Monday, January 28, 2008 at 10:06 PMgood. but that still sounds $$ so much. BUT if it helps,it is worth it.
Do you know what your sed rate was or RA factor was when dx?
I hate to hear you are on so many drugs. I feel like I do know you because of our "link" in RA and I do wish you and me wellness and good health this year! let me know how you do when on that new med..haven't heard of it.
good luck Pam Harrell
replyre: re: drug plans
Hollybgroovin
Monday, January 28, 2008 at 10:22 PMI don't know what my sed rate was when I was diagnosed, but my rheumatoid factor was 110 when I was first sent to a rheumatologist. I also know that my sed rate a crp has never gone down. My doctor suspects that it because there is an active infection in my body, which they can not find. So I currently take minocin which is an antibiotic after taking clindamycin for quite a while. I was taking sulfasalazine for a while for inflammation but it caused damage to my kidneys. I will get there some day :)
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Untitled Comment
kelly dunn
Saturday, March 01, 2008 at 07:01 PMwell, i am 29 and know how you feel. i have had RA since 16 years old. one of the worst parts about having it, besides the pain and depression that can come, is how people look at you like "you look healthy and young, you couldn't possibly be that bad".although i still have the ability to function, i guess it may be because my doctors and i have stayed on top of the pain and joint damage (in texas).
but, on top of having RA and constant pain, i also have high blood pressure and diabetes (i wear an insulin pump).
but now, we have relocated to new mexico and i haven't found a great doctor. when i asked for a wheelchair decal, since i had one from texas, he just looked at me and stated he likes to get to know his patient's first before he just hands these out to everyone. well, i wanted to ask how many hips he's had replaced. he asked me 'when you have pain, how bad is it really'.
anyway, i have 2 small children, girls. i have made it my mission to breastfeed my baby who is 3 months, but can hardly hold her up or get anything else done. but, we decided the breastmilk for her is worth it. i have been off of remicade since i found out i was pregnant and i have had to 'survive' on the only 'safe' med for pregnancy and bfeeding-prednisone. my dose, though, is almost at the dangerous level, if i go any higher, i have to stop bfeeding.
i am determined.
hang in there, and find joy and strength through your children, as i have done.
PS remicade is a wonderful medication, as i am sure rutuximab (sp?) and orencia are. take them as soon as you can so you can see if they'll help you too.
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Hey "Hollie"---I just read your comments on the internet. I have OA, but I DO understand part of what you are going through. I have had to have 5 major surgeries so far (little things like replacing both hips, etc.) but do well most of the time. One of the most helpful things that I've done and it might help you too---get in touch with your local Arthritis Foundation chapter---and get active (I KNOW---you're thinking--but I can't)---the reality is---there's some way you CAN help others---which somehow seems to help with your own disease/problems. I KNOW you're scared--but there are people out there that can and will help---if nothing else---become a new friend and listener. I've been writing for Health Central for almost 2 years---love it---and have met awesome people. I'm "moving" to Africa for a few months as a volunteer in a tiny village helping women start a batik fabric business, and am also hoping to climb at least part of Mt. Kilimanjaro for my 65th birthday---a celebration of how far I've come and the successes I've had with some of modern medicine. Don't get discouraged---there's lots of us out here who are willing to listen----
Pattye G. Snyder
e-mail: stuggars@insightbb.com
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