Medical Forum / Diseases and Disorders / Arthritis / September 2008
Member Update/survey
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RoseB - 28 Aug 2008 07:11 GMT I thought by way of cheering ourselves up and getting this ship back on course that I would start a new Q & A thread. The questions I have posed are meant to be positive so that we can think about how far we have come since beginning this disease ( and I am optimistic that many of us are doing better). Please remember that this post is meant to be supportive and not to advance one type of treatment above any other. We are all different and what works for one, may not work for another. I am not collecting any data, just looking to conduct a roll call of sorts.
1. How many years have you had RA or any of its cousins?
2. What meds are you on?
3. What works?
4. What complementary practices do you use that have worked for you? (supplements, heat, massage, accupuncture??)
5. What, if anything, has this disease taught you?
6. What support do you have as you manage your disease?
7. What tips do you have that help you get through your day?
8. What assistive devices do you use, if any?
9. What do you know know about RA that you wished you had known when you first developed RA?
10. What is good about today?
Rose @}->-- Being educated means that rather than fearing the unknown, one seeks to understand it.
Please remove "Ima" to reply.
RoseB - 28 Aug 2008 07:31 GMT >I thought by way of cheering ourselves up and getting this ship back >on course that I would start a new Q & A thread. The questions I have [quoted text clipped - 7 lines] > >1. How many years have you had RA or any of its cousins? 39
>2. What meds are you on? humira mtx, celebrex
>3. What works? remiade did until i went refractory, enbrel did but stopped.
>4. What complementary practices do you use that have worked for you? >(supplements, heat, massage, accupuncture??) heat I don't really care for massage
>5. What, if anything, has this disease taught you? Not to take anything for granted never judge a day by how i feel in the morning Generally things improve if i try to work through it
>6. What support do you have as you manage your disease? family and friends have been good
>7. What tips do you have that help you get through your day? don't do anything for too long, if sitting get up and walk every now and then. If walking sit. if standing perch on something to take the weight off iron sitting down use large handled mixing spoons get someone else to do the chopping
>8. What assistive devices do you use, if any? have resting splints and working splints long handled researchers one inch lift on my left shoe
>9. What do you know know about RA that you wished you had known when >you first developed RA? keep active to maintain joint function
>10. What is good about today? today was disappointing for a variety of reasons and it makes me sad to see where this group is going, because soon it will be like MHA was. we don't want that to happen.
What is good is that i heard a wonderful presentation by Barbara Coloroso soon i will be starting another school year i have wonderful friends and family the sun was shining
> Rose @}->-- >Being educated means that rather than fearing the unknown, > one seeks to understand it. > >Please remove "Ima" to reply. Rose @}->-- Being educated means that rather than fearing the unknown, one seeks to understand it.
Please remove "Ima" to reply.
Walt - 28 Aug 2008 11:46 GMT > I thought by way of cheering ourselves up and getting this ship back > on course that I would start a new Q & A thread. > > 1. How many years have you had RA or any of its cousins? Sero-neg RA for 17 years OA for 34 years
> 2. What meds are you on? Humira, Arava, MTX, Relafen, and a host of others for other things - 17 in all
> 3. What works? I can definitely tell that the Humira does some good, as does the Relafen. I'm not so sure about the Arava and MTX, though I am still titrating up on the MTX.
> 4. What complementary practices do you use that have worked for you? > (supplements, heat, massage, accupuncture??) heat and ice, relaxation, accupuncture (when I can afford it)
> 5. What, if anything, has this disease taught you? Patience and appreciation for all I can do
> 6. What support do you have as you manage your disease? My wonderful family, including the most supportive wife on the planet!
> 7. What tips do you have that help you get through your day? Don't let your disease define who you are. Manage the disease - don't let it manage you.
> 8. What assistive devices do you use, if any? A cane as needed.
> 9. What do you know know about RA that you wished you had known when > you first developed RA? That you have to take control and not expect the docs to know everything.
> 10. What is good about today? I'm still kicking!
Walt
RoseB - 28 Aug 2008 16:44 GMT >Don't let your disease define who you are. Manage the disease - don't >let it manage you. Amen to that! I could not agree more. Rose @}->-- Being educated means that rather than fearing the unknown, one seeks to understand it.
Please remove "Ima" to reply.
Harvey R. Stone - 28 Aug 2008 13:59 GMT >I thought by way of cheering ourselves up and getting this ship back > on course that I would start a new Q & A thread. The questions I have [quoted text clipped - 7 lines] > > 1. How many years have you had RA or any of its cousins? 32 years and under an RDs care for 25
> 2. What meds are you on? Arava or Enbrel,,,,, they both work for me.
> 3. What works? In the past,,, Gold, Methx, Sulfasalizine, Arava, Enbrel,,,,now, the last two
> 4. What complementary practices do you use that have worked for you? > (supplements, heat, massage, accupuncture??) Milk Thistle for care of my liver, Acidophilus for the care of my gut,, Vit. C,D and Magnesium for the ticker. Heat always worked better for me but I used to use ice on my knees and ankles if they were hot.
> 5. What, if anything, has this disease taught you? People can not really > relate to someone with RA,,, can not relate to someone who works shift [quoted text clipped - 8 lines] > as much as you can in your dialy life. Know when what you do is causing > damage and adjust your daily life.
> 8. What assistive devices do you use, if any? Wrist and knee braces and > one for the small of my back which does not fit anymore. :-) [quoted text clipped - 6 lines] > just steroids and gold or aspirin and that the doctors know more and do > more. Harv
> Rose @}->-- > Being educated means that rather than fearing the unknown, > one seeks to understand it. > > Please remove "Ima" to reply. Nann Bell - 28 Aug 2008 15:22 GMT > 1. How many years have you had RA or any of its cousins? diagnosed - 23 years. Had periodic inklings for about 13 years before that, but never severe enough or long lasting enugh to drive me to a dotor.
> 2. What meds are you on? PA-wise: arava, diclofenac (Voltaren), take my tyloenol & ultram for both PA & fibro pain
> 3. What works? many meds help some, none entirely, big improvement don't last for long
> 4. What complementary practices do you use that have worked for you? > (supplements, heat, massage, accupuncture??) soaks in whirlpools - for a while. Massage helps with muscle siffness from doing things differently to accomodate joint pain. Ice helps with flaring jints - can't tolerate heat then. And capsacin creams help some.
> 5. What, if anything, has this disease taught you? that I'm stronger than I realized not to be proud about letting others help me - especially those who love me. that people who appear well aren't necessarily! to truly value the people you can trust with how you fell and who let you lean on them (and that thought just got Mike a big hug)
> 6. What support do you have as you manage your disease? immeasurable support from my family & from this group! But I struggle with how much of my pain to let my mother see as I know she feels esp. bad about my pain and babout how the auto-immune genes of she & Daddy merged in me.
Generally, very good docs.
> 7. What tips do you have that help you get through your day? avoid overcomitting yourself give yourself lots of little rest breaks - even a couple of miutes of relaxing can make a difference in coping
> 8. What assistive devices do you use, if any? wrist &/or thumb braces arch sleeves to reduce the pressure on ligaments from my bunions
> 9. What do you know know about RA that you wished you had known when > you first developed RA? not much - Daddy had it before I was hit with PA, so I was fairly well informed at the time
> 10. What is good about today? I woke up!
 Signature Nann remove the Gator cheer to email me Change everything. Love & forgive.
RoseB - 28 Aug 2008 16:48 GMT >that I'm stronger than I realized >not to be proud about letting others help me - especially those who love me. >that people who appear well aren't necessarily! >to truly value the people you can trust with how you fell and who let you >lean on them (and that thought just got Mike a big hug) I think the above are very valuable lessons. The part about letting others help is especially important and is probably something others struggle with as well. I know i do. I said i would not collect the info for anything, but i am having second thoughts about that, only insofar as posting a collated list of some of these things and only posted here. It could be kind of an inspirational thing for newbies. Rose @}->-- Being educated means that rather than fearing the unknown, one seeks to understand it.
Please remove "Ima" to reply.
Nann Bell - 29 Aug 2008 01:51 GMT > The part about letting others help is especially important and is > probably something others struggle with as well. I know i do. I can't take credit for that realization. it was an older friend who helped me see that people who care about us NEED to help. It isn't weakness on our part, it's a meeting of our need for help and their need to do something to make things easier for us. I should tell Doug how his lesson took hold, one of these days.
The kicker though is when they insist on doing something that isn't really helping you rather then something that IS helpful. Then I have to remind myself it's about their need to help rather than about what I need.
 Signature Nann remove the Gator cheer to email me Change everything. Love & forgive.
Kate - 28 Aug 2008 23:18 GMT > I thought by way of cheering ourselves up and getting this ship back > on course that I would start a new Q & A thread. The questions I have [quoted text clipped - 33 lines] > > Please remove "Ima" to reply. gail - 29 Aug 2008 07:32 GMT > I thought by way of cheering ourselves up and getting this ship back > on course that I would start a new Q & A thread. The questions I have [quoted text clipped - 7 lines] > > 1. How many years have you had RA or any of its cousins? 16 years
> 2. What meds are you on? MTX
> 3. What works? MTX with cyclosporin
> 4. What complementary practices do you use that have worked for you? > (supplements, heat, massage, accupuncture??) Ice packs to get me up when I was really bad.
> 5. What, if anything, has this disease taught you? When people say they have arthritis and they only have a stiff knuckle, you say to your self "thank God they don't really have arthritis".
> 6. What support do you have as you manage your disease? Just the will to get up and do the things I want to do = lots of prayer.
> 7. What tips do you have that help you get through your day? Life has to go on so forget the pain
> 8. What assistive devices do you use, if any? A cane and elastic supports
> 9. What do you know know about RA that you wished you had known when > you first developed RA?
> 10. What is good about today? That the new hip I got 6 weeks ago is so wonderful - not a drop of pain in the hip now for 6 whole weeks. It is just so wonderful to walk without a limp and that stabbing pain. I'm going to ask for a new knee next week when I see the specialist.
> Rose @}->-- > Being educated means that rather than fearing the unknown, > one seeks to understand it. > > Please remove "Ima" to reply. Nann Bell - 29 Aug 2008 12:06 GMT >> 7. What tips do you have that help you get through your day? > Life has to go on so forget the pain how true - I think you hit the core of what keeps us going.
>> 10. What is good about today? > That the new hip I got 6 weeks ago is so wonderful - not a drop of > pain in the hip now for 6 whole weeks. It is just so wonderful to > walk without a limp and that stabbing pain. > I'm going to ask for a new knee next week when I see the specialist. Gail, it is wonderful that you've had such great results from your hip replacement! What fabulous news to hear. May you have as great a success with your knee-replacement-to-be.
 Signature Nann remove the Gator cheer to email me Change everything. Love & forgive.
ANN M - 29 Aug 2008 14:31 GMT Gail, I am so happy for you. It really makes me happy to hear that your replacement was such a huge success. To be out of pain and to be walking better is the best outcome ever. Good luck with the knee if you have it done. Ann
Harvey R. Stone - 29 Aug 2008 14:59 GMT > Gail, it is wonderful that you've had such great results from your hip > replacement! What fabulous news to hear. May you have as great a success > with your knee-replacement-to-be. Those are my thoughts too. Harv
gail - 01 Sep 2008 00:53 GMT > > I thought by way of cheering ourselves up and getting this ship back > > on course that I would start a new Q & A thread. The questions I have [quoted text clipped - 59 lines] > > - Show quoted text - Thank you every one for your kind thoughts - It is the first day of spring here in Australia and the sun is out and I am going for a walk around the neighbourhood just to see the lovely flowers in everyones yard (and to show off my new hip :) ) Gail Australia
Gloria Wolfe - 30 Aug 2008 08:01 GMT I'll come back to this. It's too late to think straight, but I will participate in the survey. Nanny
On 8/28/2008 1:11 AM, imarosa.1@shaw.ca wrote to All:
-> I thought by way of cheering ourselves up and getting this ship back -> on course that I would start a new Q & A thread. The questions I have -> posed are meant to be positive so that we can think about how far we -> have come since beginning this disease ( and I am optimistic that many -> of us are doing better). Please remember that this post is meant to be -> supportive and not to advance one type of treatment above any other. -> We are all different and what works for one, may not work for another. -> I am not collecting any data, just looking to conduct a roll call of -> sorts. -> -> 1. How many years have you had RA or any of its cousins? -> -> 2. What meds are you on? -> -> 3. What works? -> -> 4. What complementary practices do you use that have worked for you? -> (supplements, heat, massage, accupuncture??) -> -> 5. What, if anything, has this disease taught you? -> -> 6. What support do you have as you manage your disease? -> -> -> -> 7. What tips do you have that help you get through your day? -> -> 8. What assistive devices do you use, if any? -> -> 9. What do you know know about RA that you wished you had known when -> you first developed RA? -> -> 10. What is good about today? -> -> Rose @}->-- -> Being educated means that rather than fearing the unknown, -> one seeks to understand it. -> -> Please remove "Ima" to reply.
Sprockets - 30 Aug 2008 17:47 GMT 1. How many years have you had RA or any of its cousins?
25+ years RA & OA
2. What meds are you on?
Enbrel & Celebrex for RA, Tylenol for pain
3. What works?
Both work well
4. What complementary practices do you use that have worked for you?
> (supplements, heat, massage, accupuncture??) I use heat for shoulder flares. The best complementary practice for me is to get into a pool and exercise. I am surprised by how well my joints move in the water.
> 5. What, if anything, has this disease taught you? To appreciate what I can do, and not to define myself by what I cannot do.
> 6. What support do you have as you manage your disease? A husband who has been by my side through each and every surgery. I also have made many good friends along the way who have taught me patience and courage.
> 7. What tips do you have that help you get through your day? Get up and get moving, but I pace myself by resting when needed.
> 8. What assistive devices do you use, if any? I use a reacher; a long handle shoe horn; I have adapted some devices for house cleaning. Even though not a device, the biggest help is the orthopedic shoes I had made last year. A real extravagance, but without them I would be limited to walking and standing for very short periods.
> 9. What do you know know about RA that you wished you had known when > you first developed RA? When I was first diagnosed my physician told me to rest, rest, rest, but I now know that was bad advice. I should have continued to move as normally as possible and use physical therapy, rest and pain meds to help manage pain and immobility.
> 10. What is good about today? I am able to get up and do almost everything I want to do.
Great questions, Rose.
Bonnie
RoseB - 30 Aug 2008 18:18 GMT Thank-you for your compliment Bonnie, and thanks for answering. You mentioned the issue of rest being part of the treatment package in the early days. I went through that myself. Although I had physio range of motion exercises, i was not encouraged to do much else. Mind you I never felt like it either, as the meds did not do much. We have certainly progressed in many areas. Rose @}->-- Being educated means that rather than fearing the unknown, one seeks to understand it.
Please remove "Ima" to reply.
Waltzing Matilda - 31 Aug 2008 20:43 GMT Guess I better take the survey, too. . . .
Java Jean
1. How many years have you had RA or any of its cousins?
Diagnosed with RA and SS in 1996; the RD added Fibromyalgia in 1997.
2. What meds are you on?
Tylenol for pain; Nexium for stomach damage from NSAIDs; curcumin for inflammation
3. What works?
Above regimen seems to be okay and tolerable for the time being. (Knock on wood.)
4. What complementary practices do you use that have worked for you?
Moist heat treatments. The greatest relief I obtain is from a leisurely soak in a warm bathtub.
> 5. What, if anything, has this disease taught you? The value of patience, planning, pacing. To learn to speak up for myself and be my own best advocate.
> 6. What support do you have as you manage your disease? My husband has learned to step in and be helpful when I need assistance. He was very much in denial for the first several years, but it finally dawned on him that this was real, it wasn't likely to go away, and he was going to have to accommodate it as a "third entity" in our marriage. He got with the program.
> 7. What tips do you have that help you get through your day? Stop and rest when you need to. Say no when you need to--even if it is just to yourself. The unfinished items on today's list can be re-entered on tomorrow's list; they're not carved in stone. So if you need a nap, go ahead and take one!
> 8. What assistive devices do you use, if any? I have a walker--which I have named "Waltzing Matilda." I have a Pepto-bismal pink bicycle bell on Matilda's left-side handbar, for dawdlers who get in front of me and unknowingly impede my progress, and I am not shy about ringing it. "Excuse me, may I get through, please?" (Everybody loves my bell; everybody always wants to ring it. It's a great ice-breaker.)
I have a transport wheelchair--which I have named "The Big Rig." (It's the most fabulous shade of fire-engine red!!)
I hope soon to get a motorized scooter--and I haven't picked a name out for this one yet. (Any suggestions?)
> 9. What do you know know about RA that you wished you had known when > you first developed RA? Three things:
(a) How very difficult it is to explain this disease to family members and friends. They still all want to think "osteo" instead of rheumatoid. I have one relative who still, to this day, thinks when I resort to the wheelchair I am doing it "just for attention."
(b) What a struggle I would have finding the right medications and right dosages to be of real benefit to me.
(c) What a toll this disease and/or the medications would take on my cognitive functioning. Because of the pain and/or meds, my thinking skills are, to me, diminished. It takes longer for me to process things.
> 10. What is good about today? I'm breathing in, I'm breathing out. I'm vertical. I am ambulatory to a degree. And I have a lot of interests that keep me engaged each and every day.
StrangeDiva - 31 Aug 2008 23:42 GMT 1. How many years have you had RA or any of its cousins? Was diagnosed with early onset OA about 6 months ago.
2. What meds are you on? Relafen, pain medications (also used for chronic pain), calcium.
3. What works? Relafen (NSAID) works best for me atm.. it's been great on inflammation.
4. What complementary practices do you use that have worked for you? (supplements, heat, massage, acupuncture??) Calcium, along with daily doses of vitamins.
5. What, if anything, has this disease taught you? eat right, and take it one day at a time.. cause you never know what tomorrow brings..
6. What support do you have as you manage your disease? My family which includes my mom (who has RA), my dad, my brother, my husband, his mom and dad and brother..
7. What tips do you have that help you get through your day? To get up and stretch.. take a walk.. otherwise I get too stiff
8. What assistive devices do you use, if any? On the very bad days I use a cane..
9. What do you know know about RA that you wished you had known when you first developed RA? About how much it really effects your life and body..
10. What is good about today? It's sunday.. a day of relaxation and reflection.. my pain is not bad on the OA side.. but the chronic back pain is not good..
Kelly - 01 Sep 2008 04:36 GMT > 1. How many years have you had RA or any of its cousins? I have had RA for 13 years.
> 2. What meds are you on? I am on prevacid, nadalol (to counteract the high > blood pressure from the arava - a reminder of it), gabapentin and keppra [quoted text clipped - 36 lines] > splints this week, walking is getting sloppy - need hip bursa's injected > or need to tighten ab muscles etc.
> 8. What assistive devices do you use, if any? cane, scooter, high toilet, levers on all doors and taps, reacher, special sewing machine, padded tools.
> 9. What do you know know about RA that you wished you had known when > you first developed RA? that there was so much hope. When I developed RA there were few meds - I never dreamed that biologics would make so much difference and would be around so quickly. Wow! We live in a great time - more on the way too, one day I believe they will engineer the biologics directly to our genetic problem - our very own drug that will actually be the "medical cure" while they perfect how to stop it in the first place.
> 10. What is good about today? The sun shone, diane doesn't have RA, Donna and I are going to see results in our RA with the rituxan and DeeTee is going to be right behind us, Rose is almost finished her degree - wow it will be so great to hear that in April - you will do it this year Rose!, Nann is finally getting some more answers - and they will figure it out this time, both kates are finally getting over the ouchies and we are going to put some people to work making bubble wrap, we are hearing from M so hopefully that means she has a place to stay (need to hear more M) and finally we are not hearing from a lot of people - KJ, Melissa, Goddess, and many more which I hope means the biologics are making their life much better - otherwise they would be here looking for answers and support.
thanks Rose.
> Rose @}->-- > Being educated means that rather than fearing the unknown, > one seeks to understand it. > > Please remove "Ima" to reply. RoseB - 01 Sep 2008 04:50 GMT Thanks Kelly for such a thorough reply. We can all learn a great deal from you!! Rose @}->-- Being educated means that rather than fearing the unknown, one seeks to understand it.
Please remove "Ima" to reply.
Nann Bell - 04 Sep 2008 16:43 GMT The 2 young
>> kids next door have done many favors for me for a loonie ($1). you bring a smile to my face! I well remember the owner of a private campground NE of Ottawa where we stayed overnight in '03 explaining to us about the loonie and the two-ney (or however the latter is spelled). We both loved those nicknames for the money......
 Signature Nann remove the Gator cheer to email me Change everything. Love & forgive.
Diane - 01 Sep 2008 04:52 GMT hi all, i'm going to try to respond to these questions. forgive typos.c an't see the screen well. not supposed to be on the computer much. i'm very swollen and incredibly bruised and bloodied and wondering why i ever wanted to dot this sosmetic surgery and if anyone has ever done this and can tell me i'll eventually look better, i'd love to hear it cause right now, i'm not so sure! john's worried he won't recongize me. i think i'm doing ok tho. this is day three.
1. How many years have you had RA or any of its cousins?
diagnosed 13 years ago as RA or PsA, but symptoms started a good ten years before that.
2. What meds are you on? remicade, max dose andarava. celebrex and tylenol as needed. (also lipitor,protonix, atenelol)
3. What works? all of the above
4. What complementary practices do you use that have worked for you? (supplements, heat, massage, accupuncture??)
sore no more.
5. What, if anything, has this disease taught you?
i coudl right a book! it's taught me how amazingly strong i can be. it's taught me how incredibly supportive this group of people, few of whom i've ever met, can support me and come to mean to me. it's taught me how resilient people are. it's inspired me. it's filled me with gratiutde. it's made me understand the lives of my older relatives who had similar afflictions so much better and on and on.
6. What support do you have as you manage your disease?
have a wonderful singificant other who has crohns and totally gets what it's like to live with a chronic disease. my family,although they are not near by, are always in my corner.
7. What tips do you have that help you get through your day? to keep in mind that pain is inevitable but suffering is optional .
8. What assistive devices do you use, if any? iwear a brace. ihave a scooter i use rarely but have it for times when i need to cover a lot of territory. i am thinking i should get a cane because my blanace is getting iffy.
9. What do you know know about RA that you wished you had known when you first developed RA?
that it should be treated aggressively.and that i wished i hadn't spent so much time in denial. i lost a lot of treatment time playing around with "alternative" treatments that didn't work.
10. What is good about today? you guys are a part of my life. :)
StrangeDiva - 01 Sep 2008 05:25 GMT I've not done cosmetic surgery but I could only think of what it feels like.. I've been thinking of getting something done for a very long time .. I just want to feel confident in the way I look but i've only promised to get it done after I lose the weight ... so I have a while to think on it.. I hope you feel better soon and I'm sure you will look FANTASTIC!
> hi all, > i'm going to try to respond to these questions. forgive typos.c an't [quoted text clipped - 52 lines] > 10. What is good about today? > you guys are a part of my life. :) loujeanb - 01 Sep 2008 14:50 GMT I agree with you. What I have in mind would not be covered by insurance, but really can't justify spending the money on it. Nobody will see most of it. After four pregnancies and losing 20 pounds, I really need a tummy tuck or whatever they call it now, when they lift the whole bottom up and take out the skin in between. I hate the droopies I have under my arms, but I can ignore those as long as I don't wear a sleeveless blouse or dress.
As to the rest of the questions: 1. How many years have I had RA or a cousin? They told me in 1960 that I had OA, but didn't really have any symptoms for years. They really started getting bad in the 1980's. In the past two or three years, Morton's neuromas have turned up in both feet.
2. What meds am I on? Arthrotec, glucosamine/chondroitin, ACTIVon, Lortab for arthritis, Cephalexin treatment to stop UTIs Colchicine for gout of pseudo-gout, Evoxac and Restasis for dry mouth and eyes (no indications in blood of Sjogren's Syndrome) Ionil Plus Shampoo for Itchy scalp Lortab 7.5/500 for pain Miacalcin drops for Osteopenia (to be replaced by Reclast this month on the 18th) Neurontin for burning feet and legs Qualiquin (quinine) and tonic water for leg cramps Trileptal for seizures (had once in 2005, but must take if I want to drive) Xanax for Essential Tremor (only in left hand, thank goodness) Zoloft for depression Multivitamin/mineral (Iron free), calcium, vitamin E for general health
3. What works? all of the above - except knees are getting bad - consult on TKR in three weeks. May have to have hip replacement eventually - get spasms when standing.
4. What complementary practices do you use that have worked for you? (supplements, heat, ice) I just got a lift chair like my mom's with heat and massage. Oh, feels so good. It's new and I'm having some problems with the wave massage, but it should only need just an adjustment. Most of my symptoms can be calmed down by getting off my feet, so I use a stool in the kitchen for any cooking that requires time at the stove.
4. What, if anything has this disease taught you? We were never promised that life would be fair, but how I take it is up to me and no one else. I've found a great deal of support here in this group. At times, I don't feel in as bad a shape as a lot of you, and so, I feel a little guilty. I promise not to let that feeling out too often. It has helped me to understand some of the mysterious pains I have had in the past. This newsgroup has provided me with a large group of people who understand all the different ways that we can feel. It has provided me with solutions to try to different problems.
6. What support do you have as you manage your disease? A mom who understands and can also help me to understand different aspects of a chronic disease.
7. What tips do you have that help you get through your day? There are helps for pain, but suffering is up to me, as StrangeDiva said. When things get really rough, I go to bed with a heating pad on my pad, elevate my knees and get lost in a good mystery or science fiction book. I have a cordless phone, so I can take it with me and don't have to jump (hah!) out of the chair if I am expecting a call.
8. What assistive devices do you use, if any? I use the motorized carts at the stores and amusement parks. I use a walker, now, to get around because my left knee and right hip are weak. Whichever side I've used a cane on, the other side complained. I do use a cane to get from the car into the restaurant when my mom and I go out for Sunday lunch to minimize the congestion as she uses a walker, too.
9. What do you know about RA that you wished you had known when you first developed RA. I'm still trying to keep straight the difference between RA and OA. I've also learned that the best treatment is to use proven methods first. I've also learned that it's not going to go away, but it can be controlled through one way or another. So, if something doesn't work, there are other treatments that will.
10. What is good about today? The sun is shining here. I don't have any relatives in the areas threatened by Gustav or Hanna. Well, my son does live in Myrtle Beach, but lives an adequate distance from the beach, so won't be affected by "surge". Today I feel fairly well, though my back was kicking up earlier. The temperature is reasonable. I only had to run the sprinkler system once in August, so water bill will be low. The main thing good about today is my mom and I have good insurance coverage and don't have to dread getting medicines that cost an arm and a leg. She is there for me to go to and I'm here for her. Neither of us has major dietary restrictions, even though she does had diabetes type 2. And, most important of all, I have you guys to ask about various things or to whine to when things aren't going the way I think they should.
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> I've not done cosmetic surgery but I could only think of what it feels > like.. I've been thinking of getting something done for a very long time [quoted text clipped - 57 lines] >> 10. What is good about today? >> you guys are a part of my life. :) Harvey R. Stone - 01 Sep 2008 15:42 GMT > 9. What do you know about RA that you wished you had known when you first > developed RA. > I'm still trying to keep straight the difference between RA and OA. If a person has inflam.arth. and RA is one of them,,,, they need to take a DMARD to keep the damage done down. If you have inflam.arth and/or RA and do not take a DMARD,,, you are fighting a slow loosing battle.
If a person has OA without inflammation,,, a DMARD would do not good at all. It is most important to know what you have and take steps to deal with it. If you do not know what you have,,,, take steps to find out.
Harv
Donna G. - 01 Sep 2008 18:38 GMT RA, PA, and the other forms of inflammatory arthritis usually are due to an immune system that has gone out of whack and attacks its own body/joints/organs/cells, etc.
OA is basically a wear and tear process of aging.
. . . .
Donna . . . . 1.) ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS......
2.) May God's richest blessings be upon you both today and throughout the year. May His blessings flow through you to touch the lives of everyone you meet.
StrangeDiva - 01 Sep 2008 18:57 GMT My mom has RA.. and she has ITP which is an immune disorder causing her blood platelets to drop drastically where we have 400K of platelets she may have only 60K.. that's the lowest she's ever been.. So the RA showed a few years ago for her.. I'm at 50% risk of developing ITP since she has it her mom had it and one of my cousins has it.. They've noticed the OA that I have in my hips and hands.. at the moment it's minor and is treated with NSAIDS.. I'm honestly a little afraid of ITP I know what my mom went through with infusions of 12 different meds to get her blood platelets up.. it's almost like a severe form of anemia which I have anemia so her and I get really tired during the day and have to take naps.. I'll know when ITP starts when I start showing bruises for no apparent reason.. so yeah I babbled sorry!
> RA, PA, and the other forms of inflammatory arthritis usually are due to > an immune system that has gone out of whack and attacks its own [quoted text clipped - 21 lines] > you to touch the lives of > everyone you meet. loujeanb - 01 Sep 2008 22:02 GMT Thanks - I get it set in my mind and then lose it. Your definition is so well done that I probably can remember it.
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> > RA, PA, and the other forms of inflammatory arthritis usually are due to [quoted text clipped - 22 lines] > you to touch the lives of > everyone you meet. RoseB - 01 Sep 2008 16:27 GMT Thanks LouJean for a very positive post!
You are right life is not fair. Attitude is everything so it is important to pick a good one. Rose @}->-- Being educated means that rather than fearing the unknown, one seeks to understand it.
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Squirrely - 02 Sep 2008 02:20 GMT  Signature Love and hugs to all Love Squirrely Jo
> 1. How many years have I had RA or a cousin? I was told had OA in 1970's > but think I had it longer than that. Still believe I have RA but drs say [quoted text clipped - 17 lines] > myself and rest when needed. Do things in smaller amts everything doesn't > have to be done in one day, patience (still working on that one) to appreciate the beauty of other things (you know like stop and smell the roses) how wonderful some people can be. How it is sometimes better to have others do things for you instead of you always wanting to do for others and be superwoman. How to let go of things like cleaning (the dust bunnies are not going to attack me if they stay there for months ;0) and the cleaning police are not going to drag me off to a cell that shows me how clean my house should be) Who my true friends are and who really cares. What a great support we have and how kind, caring and generous people can be. What is important and what is not. A clean house is not going to make or break you. A closer walk with God
> 6. What support do you have as you manage your disease? ASA and a FMS > group my daughter in law SD [quoted text clipped - 4 lines] > reading. this support group. turning to the Lord, we now have such a close > relationship, talking with a friend or loved one who understands.
> 8. What assistive devices do you use, if any? cane, wheel chair and > walker if needed, braces, my hubby and daughter in law, oh yeah this > should have been above, using a spray bottle to clean the floors instead > of a bucket of water, things in each bathroom and kitchen to clean them, > etc.
> 9. What do you know about RA that you wished you had known when you first > developed RA. that there was so much help out there for it. [quoted text clipped - 4 lines] > rested. It is labor day and I am not in labor. LOL ;0) I have wonderful > caring friends here. This group period. A loving and caring daughter in law.
RoseB - 02 Sep 2008 04:21 GMT It sounds as though you have many of the important things including a loving and supportive family. Rose @}->-- Being educated means that rather than fearing the unknown, one seeks to understand it.
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ANN M - 01 Sep 2008 15:22 GMT DIane, Two of my aunts had eyelid surgery (and I inherited their droppy eyes), One came to live with me for two weeks because she needed help putting the drops in her eyes and the cream stuff around the eyelids. Yes, she looked like she had gone 15 rounds in a heavyweight fight at first, but the bruises faded to pretty yellows and oranges and soon she was just fine and looked much better than before the surgery Don't get discouraged, you will be prettier than ever soon. Ann
Diane - 01 Sep 2008 21:50 GMT thanks, ann! that helps. the droopy lids run in my family, too, which is why i finally gave in and did this, tho they hadn't quite reached the point where insurance would cover the surgery as it did for some other family members. yesterday, i thought maybe it was a mistake. today i can see better, tho. all is well.
diane
RoseB - 01 Sep 2008 07:49 GMT Great answers Diane, thank-you.
You will look awesome once all the swelling is gone. Mind you, I thought you looked awesome before.
If I could have any cosmetic procedures, I think a little tightening here and there would be in order. Also my lips are pretty thin....LOL Rose @}->-- Being educated means that rather than fearing the unknown, one seeks to understand it.
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loujeanb - 01 Sep 2008 13:56 GMT <clip>
>>to keep >>in mind that pain is inevitable but suffering is optional . <clip>
Thanks, Diane, for a good thing to remember.
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> hi all, > i'm going to try to respond to these questions. forgive typos.c an't [quoted text clipped - 52 lines] > 10. What is good about today? > you guys are a part of my life. :) Gloria Wolfe - 03 Sep 2008 17:20 GMT On 8/30/2008 11:47 AM, bcsprockets56@gmail.com wrote to All:
-> 1. How many years have you had RA or any of its cousins? 25+ years also - Nanny -> -> 25+ years RA & OA -> > -> 2. What meds are you on? -> Plaquenel & MTX (Nanny) and a whole bunch more -> Enbrel & Celebrex for RA, Tylenol for pain -> > -> 3. What works? -> For pain: Hydrocodone, Doxepin, Excedrin, Tramadol The RA meds seem to have slowed the process somewhat and have given some relief from pain in my joints. (Nanny) -> Both work well -> > -> 4. What complementary practices do you use that have worked for you? -> > (supplements, heat, massage, accupuncture??) heat, ice, chiropractic, massage therapy (Nanny) -> -> I use heat for shoulder flares. The best complementary practice for -> me is to get into a pool and exercise. I am surprised by how well my -> joints move in the water. -> > -> > 5. What, if anything, has this disease taught you? I'm getting older and weaker ;-) (Nanny) -> -> To appreciate what I can do, and not to define myself by what I cannot -> do. -> > -> > 6. What support do you have as you manage your disease? Friends who have Arthritis, newsgroups, hubby (Nanny) -> -> A husband who has been by my side through each and every surgery. I -> also have made many good friends along the way who have taught me -> patience and courage. -> > -> > 7. What tips do you have that help you get through your day? Rest between odd jobs; don't expect to do household chores in one day; don't feel guilty about not performing as much as you once did; listen to your body at all costs! (Nanny) -> -> Get up and get moving, but I pace myself by resting when needed. -> > -> > 8. What assistive devices do you use, if any? None right now. Nanny -> -> I use a reacher; a long handle shoe horn; I have adapted some devices -> for house cleaning. Even though not a device, the biggest help is the -> orthopedic shoes I had made last year. A real extravagance, but -> without them I would be limited to walking and standing for very short -> periods. -> > -> > 9. What do you know know about RA that you wished you had known when -> > you first developed RA? -> -> When I was first diagnosed my physician told me to rest, rest, rest, -> but I now know that was bad advice. I should have continued to move -> as normally as possible and use physical therapy, rest and pain meds -> to help manage pain and immobility. -> -> > 10. What is good about today? I woke up ;-) I have a "clean slate" from yesterday; I'm not on anyone else's schedule (Nanny) -> -> I am able to get up and do almost everything I want to do. -> -> Great questions, Rose. -> -> Bonnie
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