Having a Cuppa Together: a Rheumatoid Arthritis Meme
What’s this Rheumatoid Arthritis meme about?
This is the first meme on Rheumatoid Arthritis Warrior. It’s just a set of questions that we each answer. If you’re wondering more about what a meme is, here is a good explanation I found on a site called The Daily Meme.
This RA meme is about the things we might ask each other over coffee the first time. Together, the responses to the questions create a kind of snapshot of our lives with Rheumatoid Arthritis. Hopefully, it will be fun and we can get to know more about each other.
The photo is a snapshot of me with my new smaller camera. I’ve never taken a snapshot of myself before since I couldn’t hold the camera out with a straight arm and press. On a rare day that I had my hair washed, I found out it was pretty fun. Some of them are pretty blurry, but I liked doing it. Maybe that will be like our meme.
- How many other diagnoses (co-morbidities) do you have?
I cannot count them on one hand. - When were you diagnosed?
Finally diagnosed in early 2006 after decades of symptoms. - How many Rheumatoid Arthritis treatments have you tried?
Too many. Oh ok, …5. - What kind of a reward do you give yourself after taking any medicine that you hate?
After I V’s I try to get milkshakes or smoothies for whoever comes with. After methotrexate, chocolate, rescue olives or potato chips if I’m in the mood. - Who helps you open doors or jars when you need it?
My teenage sons and my daughters are my heroes. They do as much as I will let them. - What would your ultimate good rheum doc do?
Doc would ask me where it hurts; ask me about my symptoms & my opinions. Then as treat aggressively as I am comfortable with. Also doc would insist pain be adequately treated. - What’s your favorite comfort for RA?
Hot bath or my son on my lap. Happiness is a warm puppy. - What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Finding a good doctor. Finally. Taking my first I V treatment. And working on this website. - What’s your biggest RA-related fear?
That one of my children will get it. - How many pills do you swallow every day?
It varies. I need more vitamins than I want to swallow. - Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Quality mattress since solid rest is the best prescription for RA (after treatment). Massage therapy by certified RA therapists (no, they don’t exist YET) Also, access to heated pools for purpose of physical therapy. - What do you wish people knew about Rheumatoid Arthritis?
How painful it is to have uncontrolled RA or RA damage. That RA is not “arthritis.” How truly brave are the warriors I know. - What would you like to say to your RA? You are the most evil disease known to man. I will fight you in my life or others until the day I die.
Let’s hear your responses to the RA Warrior meme!
Please write up your answers to the questions in the comments box below. Or if you have your own blog, you are welcome to take our Warrior meme to your own page. Please just link back here to give credit. Another thing you can do is write up the meme as a Facebook note with a privacy setting that says “EVERYONE can read” and then tell us about it with a link in a comment here. I can’t wait to read them.
Recommended reading:
- Video: Good Rheumatoid Arthritis Doctors Treat Patients
- Kelly’s RA Onset story: My Onset of Rheumatoid Arthritis
- Patients & Doctors Differ on Assessing Rheumatoid Arthritis Disease Severity
- The Value of Patient Reported Outcome Measures of Rheumatoid Arthritis
1.How many other diagnoses (co-morbidities) do you have?
6 I think. I have to go back for a complete report
2.When were you diagnosed?
2006 When I was 16 I was told afet yrs of pain that I had Jr Arthritis & I’d probably outgrow it. After my third child, i woke up one day & couldn’t use my right hand.
3.How many Rheumatoid Arthritis treatments have you tried?
2, with some gaps in between.
4.What kind of a reward do you give yourself after taking any medicine that you hate?
Never thought about doing that. Actually B4 I found this blog, I was so fed up I hadn’t taken anything in weeks.
5.Who helps you open doors or jars when you need it?
My teenage sons and my daughters help me 2. I call my son my LEFT HAND lol.
6.What would your ultimate good rheum doc do?
Cure me. Or at the very least tell the truth. Don’t tell me about agression and remmission without telling me it just may never happen. I need truth. I hate carrotes on sticks.
7.What’s your favorite comfort for RA?
Hot bath, or being able to stretch out after a long day.
8.What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
Using a cane & admitting that I have limitations. Stepping back from Youth Ministry last year. I’m back now but taking it slower
9.What’s your biggest RA-related fear?
Being dependant.
10.How many pills do you swallow every day?
round 6 or 7
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Oh yeah to the heated pools & a really good bed, one with a remote.
12.What do you wish people knew about Rheumatoid Arthritis?
I wish ppl knew everything so I wouldn’t have to say anything. I hate hearing “Young girl like You?”
13.What would you like to say to your RA? I hate you. You control 2 much of my life, but you still do NOT define me. I am much more than the total of my desease or symtoms. I am not your victim.
What are IV treatments?
Hi Nicole! thanks for your replies.
I V’s meant the treatments / Biologic like Orencia, Actemra, Remicade, or Rituxan. They work similar to the shots for treating RA but the medicine goes in thru an I V. The medicine would be destroyed going in thru the stomach so it is not a pill. But they are working on pill versions from what I read. There’s more info on Biologics by clicking on the Tags list of topics up on the right. Then just click on “Biologics for RA.”
Neat – teenage sons & daughters – how many do u have? 😀
Dear Kelly,
It is sooooo good to talk to ppl who get it. I actually have 1 teenage son and 2 younger daughters. I’ve been diagnosed with a malfunctioning valve in my left ventricle. I’ve also been having some bronchio spasms. It seems that both the valve and the bronchios in my right lung have started to harden because of RA. I’m also due to get a nexk xray soon. Seems as though there are problems there. I have sleep Apnea as well which is causing some other problems. All this aside I also have polycystic ovaries. Right now there seems to be a shortage of my drugs over here. I live in Trinidad. Been trying to get a prescription filled for more than a week.
I hope You’ve been doing well though.
Wow, Nicole. It’s wonderful to hear from you. But that’s awful about your meds. I hope it gets worked out. We had a recall in the states of liquid methotrexate, so it’s a little tougher to find right now, but I got mine at the third pharmacy I tried. Yay – wellll not really. Ick. 😛
Do you know, the last time that I went to the rheumatology clinic, that was actually the first time that I complained. I told the Dr. that I was in constant pain and he looked so surprised, he asked if i was not taking my meds. i told him that I was having some breathening trouble and he acted like I was making it up. I had to go to a GP & have an EIS done. I tell you I thoughht I was going crazy, I almost believed that it was sychosomatic. Instead RA is wreking havok with all my organs. more 2 come dum….du dum dum….
THANK YOU SO MUCH FOR THIS COMMENT, Nicole. That is enlightening. I have often found I can get what I need by going around a doctor who doesn’t get it. It’s good you went to hte GP. Good for you.
1. Two
2. July 10th, 2009
3. Three
4. I watch reality TV-it makes me realize that it could be worse-ha!
5. My teenage daughters-they are so supportive and understanding.
6. I have a great RA doctor but it is very difficult to get in to seem him–he is always booked!
7. Sunshine, hot water bottle.
8. Trying to decide who/if/when to tell that I have RA.
9. My biggest fear is that I will miss being here for my kids and that someday they may get RA.
10. Seven + weekly injections.
11. Those adhesive over the counter wraps and patches..even if they are just a panacea they make me feel some better.
Oh and the idea of a first class plane ticket instead of coach-it is so painful and hard to sit for very long in crowded conditions.
12. How painful and tiring it is. AND that it’s not arthritis that can be cured by just taking an aspirin. AND that having a lowered immune system is serious-please, please, take extra precautions if you are sick.
13. RA will not defeat my spirit, it will not take away my dreams.
Thanks, Michelle. How do you decide about who to tell?
This is a great idea Kelly! I have been really interested in the responses.
1.How many other diagnoses (co-morbidities) do you have?
Raynauds, IBS, GERD
2.When were you diagnosed?
Earlier this year – April 2010
3.How many Rheumatoid Arthritis treatments have you tried?
I’m only on my second treatment – mtx. I first tried SSZ and the side effects were terrible.
4.What kind of a reward do you give yourself after taking any medicine that you hate?
Sleep and laziness and sometimes a cookie or something chocolate
5.Who helps you open doors or jars when you need it?
My husband. My MIL just bought me one of those jar opener aids…. I think it is psychological but I refuse to use it.
6.What would your ultimate good rheum doc do?
I’m lucky to have a great rheumy and I don’t have many complaints. However, I am seronegative and I wish he were more aggressive with my treatment. So my answer is – treat aggressively regardless of RF status.
7.What’s your favorite comfort for RA?
Sleep (I keep coming back to this… ugh)
Cold packs
Hot tub
Glass of wine
8.What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
Continuing to work a 9-5 schedule
9.What’s your biggest RA-related fear?
That I will have to switch docs and that the next rheumy will change the RA diagnosis to fibro due to my seronegative status and the fact that I don’t swell much. It’s odd, but I am overly irritated when a doc says that it could be fibro. Thankfully, my current rheumy never uttered the words to me.
10.How many pills do you swallow every day?
It depends. On most days – 6. On mtx days – 12. Hoping to switch to mtx injections next week.
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Massage
Comfort shoes
12.What do you wish people knew about Rheumatoid Arthritis?
That it is not the same as osteo arthritis.
How painful it truly is.
13.What would you like to say to your RA?
Well, I think this site is G-rated, right?
1.How many other diagnoses (co-morbidities) do you have?
Hashimoto’s, possible Sjogrens, multiple food allergies, gluten intolerance, and lots of itis (tendonitis, bursitis) though I guess those fall under RA/PA
2.When were you diagnosed?
October 2009 after 3 years with a low positive RF and decades of intermittent mild symptoms. A hysterectomy in Mar 2009 was the trigger for full-blown disease.
3.How many Rheumatoid Arthritis treatments have you tried?
2 – MTX and Humira – still looking for the right one. Enbrel is up next.
4.What kind of a reward do you give yourself after taking any medicine that you hate?
Something sweet, usually chocolate. I love gluten free oreo cookies.
5.Who helps you open doors or jars when you need it?
Husband. I have more issues with spine than hands, so it’s lifting and carrying that is the biggest problem at the moment.
6.What would your ultimate good rheum doc do?
Slow down a little bit. Invite questions and give me time to think during the appt.
7.What’s your favorite comfort for RA?
Pajamas, blanket, kitty.
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Saying goodbye to the old me.
9.What’s your biggest RA-related fear?
That I will be unable to continue working and this disease will affect my husband’s ability to retire.
10.How many pills do you swallow every day?
36 – including numerous supplements
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Help with household chores.
12.What do you wish people knew about Rheumatoid Arthritis?
How unpredictable it can be, how hard the drug side effects can be, and how devastating the pain and fatigue can be. (Basically, that we aren’t lazy or flaky.)
13.What would you like to say to your RA?
You might be able to affect what I do, but you can’t take away who I am.
1. How many other diagnoses (co-morbidities) do you have?
Five.
2. When were you diagnosed?
January 3rd, 2006
3. How many Rheumatoid Arthritis treatments have you tried?
Three.
4. What kind of a reward do you give yourself after taking any medicine that you hate?
Hmmmm. I collect dolls. Sometimes I’ll splurge and get one as a reward. 😀
5. Who helps you open doors or jars when you need it?
My hubby or if he’s not around I’ll use a jar opening assistance thingy.
6. What would your ultimate good rheum doc do?
Listen, show some sympathy and help me fight.
7. What’s your favorite comfort for RA?
Warm baths and naps.
8. What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
Working through my fear of needles. Because if you have RA, needles are a fact of life.
9. What’s your biggest RA-related fear?
Becoming helpless.
10. How many pills do you swallow every day?
15-17 medications a day.
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
A hot tub. Probably not *that* surprising.
12. What do you wish people knew about Rheumatoid Arthritis?
What the pain and depression is really like.
13. What would you like to say to your RA?
You’re a real pain. I wish you’d move out.
Thanks, MaryK. Mm. Bath. I want one reading about them all here. LOL.
I had one this morning. But I have a small bathtub. What I really want is a small, heated pool in my bathroom. XD
1.How many other diagnoses (co-morbidities) do you have?
OA, Graves Disease
2.When were you diagnosed?
April 2009 officially. Several years of symptoms
3.How many Rheumatoid Arthritis treatments have you tried?
Remicade
4.What kind of a reward do you give yourself after taking any medicine that you hate?
Never really thought of this, but after my infusion, I come home to my recliner and my pillows and a good movie and end up sleeping.
5.Who helps you open doors or jars when you need it?
My hubby is wonderful to me!
6.What would your ultimate good rheum doc do?
My doc is wonderful…Dr Vaidya. He listens, he comes in to talk to me during my infusions. I would like more pain control between infusions.
7.What’s your favorite comfort for RA?
Hot bath, parrafin wax for my hands, my recliner and pillows.
8.What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
Giving myself permission to slow down or admit I can’t do it and be ok with it.
9.What’s your biggest RA-related fear?
My children or grandchildren will suffer with this. My youngest (5 yr old) granddaughter is having autoimmune issues.
10.How many pills do you swallow every day?
Between 6 and 12. Depending on the day.
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
I agree with the massage therapy. Also, a spa bathroom to be put in my house.
12.What do you wish people knew about Rheumatoid Arthritis?
That it isn’t OA. And that the pain and also fatigue are overwhelming some days. And that I am not calling off work or turning down an activity because I am lazy. I am doing it because I can’t walk anymore or I am so tired I can’t function.
13.What would you like to say to your RA?
That I hate what you are doing to my body and to my life! And PLEASE stay away from my granddaughter (and the rest of my family!)And RA….you do not define who I am!
I hope your grandaughter is ok, Phyllis.
I will pray for your granddaughter.
Trish
1. Co-Morbidities…
Sleep Apnea, Hypertension, Asthma, TMJ, OA, Plantar Fasciits, Lazy Eye, BBV or Benign Positional Vertigo with balance issues, congenital knee issues which aggravate all arthritis….
2. When were you diagnosed?
1998
3. How many Rheumatoid Arthritis treatments have you tried?
Only Two…Anti-inflamatories and Plaquenil…Rheumy’s will not treat aggressively…whatever you do..don’t move to Maine LOL
3. What kind of a reward do you give yourself after taking any medicine that you hate?
Chocolate…mostly my asthma meds…they make me feel NUTS…shaky and horrible
4. Who helps you open doors or jars when you need it?
Hubby helps but when he is not home…I don’t open jars
5. What would your ultimate good rheum doc do?
My ultimate Rheumy Doc Would listen and believe my symptoms and NOT treat the labs only…they would keep UP TO DATE AND CURRENT enough to know that just because the labs may be normal that there is still inflammation there even though clinically they cannot see it or see it in labs. That damage is being done…They would not say “you are not that bad” What a joke..yes there are many patients that are worse than me…but mild RA is a big problem, it is too dangerous of a disease to treat is with a casual comment like..”you are not that bad” Also they will do a COMPLETE EXAM…where did the complete exam go…how can they say there is no swelling without an exam? My list could go on and on…..
6. What’s your favorite comfort for RA?
My recliner and a cup of tea..while I rub on the biofreeze…my blankie and my little dachshund Molly…my precious baby
7. What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
The effort it took to be treated at all, let alone being treated with Plaquenil…Also to BEAR the comments made by uninformed physicians…There is NO inflammation…you don’t need to be treated…your inflammation markers are normal..when will they get it Kelly?
8. What’s your biggest RA-related fear?
That one of my children will get this horrible disease…That hubby will get fed up with his disabled wife…not likely at all…but my insecurity gets the best of me sometimes…
9. How many pills do you swallow every day?
Whoops BRB…did not take my pills…LOL….OK now I’m back I just swallowed 9 pills…including vitamins plus inhalers
10. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Heated pool therapy…expanded physical and massage therapy…mattress pads and mattresses…
11. What do you wish people knew about Rheumatoid Arthritis?
That it is NOT OA !!! (We seriously need a name change) How most people with RA do not get complete relief from RA pain. That RA needs support and research desperately !
12. What would you like to say to your RA?
What I would call it would have to be censored…I can’t type what I would like to say to it…it would be truly some choice vile words…
Thanks, Susan. Just curious about your asthma meds – do they have steroids in them?
Kelly…Yes but only my steroid inhaler which is twice a day…I don’t know what the impact is on my RA but surmise it certainly a consideration with any potential addition of steroids systemically or otherwise. I just had a articular injection of steroids into the right knee joint and will possibly have one in my hip next week.I have had oral steroids for my asthma…and have wondered and was amazed that my joints felt wonderful when I was on the steroids…LOL
Susan, I was just thinking the same thing. Wondering whether the steroid use is also suppressing your inflammatory labs. Not that it should matter that much – you shouldn’t be treated by labs alone anyway. But it’s part of your whole picture. Have a good Saturday. Cold up there in Maine yet? I’ve been craving lobster lately. Haha.
I was thinking along those lines…that the steroids were keeping my inflammation markers down…Also, like I said before…I love my new Ortho…he works with the Rheumy’s in Portland Maine about 2+ hours from home…If things don’t work out with my current Rheumy…I always have the option of going to the Rheumy’s my Ortho Doc works with…This Ortho Doc gets RA…I mean gets it…When I asked him whether he saw signs of RA in the xrays of my knee…he said most commonly unless the disease is very aggressive he would not see signs of erosions usually on a regular xray of the knee… That the inflammation that is systemic is present all over anyway with all people with RA…systemically….that pain can happen with no obvious swelling…When one has RA they have all over inflammation…period.. I was impressed…he specializes in Joint Reconstruction/Arthritis… I am doing a happy dance that I have someone I can count on!
Yes Kelly is pretty chilly and breezy up here today, but sunny 🙂 As far as Lobster is concerned…wish I could send you some…My neighbor brought over 6 Lobsters just cooked ! They had them left over from a Birthday Celebration…I made Lobster Salad from the cold Lobsters…Yum…
What a great doc. Totally gets it!
I’ve only had lobster 2ce. It costs about 20$ to get 1 here I think. And I don’t know how fresh that is. 🙁
1.How many other diagnoses (co-morbidities) do you have?
Does depression and anxiety count?
2.When were you diagnosed?
2000, after two years of symptoms, two RA docs and a trip to the Cleveland Clinic
3.How many Rheumatoid Arthritis treatments have you tried?
4
4.What kind of a reward do you give yourself after taking any medicine that you hate?
Hmm, I need to do that. I hate it when my hubby gives me my methotrexate shot! Too bad I can’t drink, ’cause it would be whiskey!
5.Who helps you open doors or jars when you need it?
My hubby is the best. He does everything. My dog does what he can, especially since he doesn’t have thumbs.
6.What would your ultimate good rheum doc do?
My doc is pretty good. She really strives for me to be as pain free as I can.
7.What’s your favorite comfort for RA?
Warm baths with Lush products
Snuggling with my dog
Being able to cry on my husband’s shoulder.
8.What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
Giving up my career as a lawyer.
9.What’s your biggest RA-related fear?
That it will progress to the point to where I lose my independence.
10.How many pills do you swallow every day?
I’m a walking pharmacy. Five different prescriptions, four supplements. And of course the methotrexate shot once a week.
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Cover cost for holistic treatment.
12.What do you wish people knew about Rheumatoid Arthritis?
That it is not your “Grandma’s Arthritis”. It is not a sign of getting old. Yes, I am sick, despite looking like I can function. No, it is not in my head. It is real and it HURTS!
13.What would you like to say to your RA?
If you were a person, I would so have to kick your ass.
I have met so many lawyers with RA. I cannot figure out what the risk factor might be. Except that RA seems to strike really bright people. LOL. :O
Thanks so much for participating. Love thumbs comment. Yes, depression counts. Good call.
http://stitchingnshipping.blogspot.com/2010/10/for-ra-gang.html
1. How many other diagnoses (co-morbidities) do you have?
Raynauds, IBS, GERD
2. When were you diagnosed?
May 2010
3. How many Rheumatoid Arthritis treatments have you tried?
I’m only on my second. I started with SSZ which gave me horrible side effects. Now I am on MTX and hoping to add Enbrel next week.
4. What kind of a reward do you give yourself after taking any medicine that you hate?
Endless sleep the next day
Chocolate/pastries – some type of treat
5. Who helps you open doors or jars when you need it?
My husband. My MIL just bought me one of those jar opener aids, but I refuse to use it for psychological reasons… I’ll get over it.
6. What would your ultimate good rheum doc do?
I have very few complaints with my rheumy. But my #1 wish is to treat aggressively. I am seronegative and I know I was started on weaker drugs because of this. Weaker drugs that did not work! I’m thankful that my doc ignores my normal lab work.
7. What’s your favorite comfort for RA?
Sleep (I keep coming back to this)
Hot tub
Cold Packs
A glass of wine (Yes, I know, but my rheumy says it is OK in moderation as long as I take the regular liver function tests which I do)
8. What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
Continuing a 9-5 work schedule – without a doubt
9. What’s your biggest RA-related fear?
That I will be forced to switch docs (due to relocation or otherwise) and that the new doc will change the diagnosis to fibro because I am seronegative and do not have severe swelling. Thankfully, my current doc never uttered the word fibro to me, probably because I told him upfront that I wouldn’t accept it as a diagnosis.
10. How many pills do you swallow every day?
On most days, 6
On mtx day, 12
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Massage
Comfort shoes (which I despise but find myself seeking out)
Kelly – I would love to see a blog post about shoes! I am forever looking for recs for RA friendly shoes that are actually cute 🙂
12. What do you wish people knew about Rheumatoid Arthritis?
Many people don’t understand the fatigue component
That it isn’t a disease for the elderly (how many times have I heard “you’re too young for that”)
13. What would you like to say to your RA?
Isn’t this site supposed to stay G-rated?
Thanks, Marie. G-rated: LOL! Yep. Shoe post is in the mix!
1. How many other diagnoses (co-morbidities) do you have?
Psoriasis, Psoriatic Arthritis, severe anxiety/depression
2. When were you diagnosed?
2005 after months of pain and tests.Doctor thinks the stress of moving/divorce may have triggered it off.
3. How many Rheumatoid Arthritis treatments have you tried?
3
4. What kind of a reward do you give yourself after taking any medicine that you hate?
nothing…but that’s a great idea.
5. Who helps you open doors or jars when you need it?
Hubby or 11 year old daughter if they are around. Waiting for the day I can’t open my door to get back inside 🙁
6. What would your ultimate good rheum doc do?
Would understand the pain and the swelling don’t go hand in hand and treat the pain/the patient….not the just the lab results and what he can see
7. What’s your favorite comfort for RA?
Warm heating pad, and the heated seats in my car…wish I could put them on the school bus I drive.
8. What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
Trying to keep up with my family everyday.
9. What’s your biggest RA-related fear?
That I pass it on to my children…or their children.
10. How many pills do you swallow every day?
Depends on the day. On a bad day….close to 20
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Access to a heated pool. I cannot afford a gym membership and I can’t do much exercise other than swimming.
12. What do you wish people knew about Rheumatoid Arthritis?
That you don’t have to be OLD to have RA, and that RA is not Osteoarthritis. AND just because I look ok, doesn’t mean I am not in agony on the inside.
13. What would you like to say to your RA?
Get lost…YOU SUCK!
Thanks, Kathy. Number 6 is so important. Good point. I’m hoping we can make some progress on that on.
Wow – I can’t imagine driving a school bus. Is there any way you can get a portable heating pad to work?
I have been known to bring in my bean bag heating pads that you microwave for really bad days. I pop it in the microwave at work before I take off for my run. It doesn’t last long…but it does help for a bit.
I just recently, within the last two weeks, taken a shorter route so I am not driving as long. Miss the little kids I had, but its 2 hours less driving time for me each day.
I guess that helps some. You are a warrior, Kathy.
1. How many other diagnoses (co-morbidities) do you have? To many to list, a brief would be DVT’s (deep vein thrombosis & fibromyalgia).
2. When were you diagnosed?
In 1988 age 16. Now 38 yrs young so much deforming with to many surgeries.
3. How many Rheumatoid Arthritis treatments have you tried?
4 (humira, remicade, (both failed), plaquenil & cortisone injections (when I was first diagnosed), ibuprophen, methotrexate, prednisone, & vicodin combo this works best for me).
4. What kind of a reward do you give yourself after taking any medicine that you hate?
I detest prednisone (what it has done to my body (weight-gain) along with the taste if it gets stuck going down), I usually give myself a small piece of chocolate to get rid of the metalic taste if it leaves such a taste.
5. Who helps you open doors or jars when you need it?
I do a lot of opening doors on my own, as for jars I use the back of a butter knife to break the seal and it is easy to open or I use my black-n-decker jar opener.
6. What would your ultimate good rheum doc do?
I am with the Cleveland Clinic they rank 3rd throughtout the US with RA treatments we’ve tried all different things but, I must say it’s a joint effort from the RA Dr, Internal Med Dr, & Ortho surgeon for the best treatment options. Right now alleving the pain is first and foremost.
7. What’s your favorite comfort for RA?
A good old fashioned comfort food meal. It warms the heart and soul…
8. What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
Giving up a lot of my favorite activities such as dancing canoeing (as the RA has now settled into my back).
9. What’s your biggest RA-related fear?
My nephew will one day have this terrible disease.
10. How many pills do you swallow every day?
Tuesday-Sunday 12 pills, Mondays 15 pills.
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
I also think quality mattresses & massages (P.T. actually does a limited massage techniques for RA patients, but it is written as P.T. to the ins., companies), but here they do aquatic exercising in a heated pool for ppl with disabilities (not sure if it is covered or not).
12. What do you wish people knew about Rheumatoid Arthritis?
It is one of only a few diseases that is at the top of the list to be violently painful at any given moment. If you don’t know about or understand RA read up on it there is a lot of online as well as paper articles about this disease
familiarity is key to those that don’t understand.
13. What would you like to say to your RA?
You may have thought you won but I maintain PMA Positive Mental Attitude against all the other side-effects you throw my way!
Thank you much Melissa. I love learning from long time warriors like you.
None that have been diagnosed… Yet!
Late 2004.
Quite a few… Plaquenil, Sulfasalazine, Arava, MTX tablets, Prednisalone, Depomedrone, Humira, Rituximab, MTX injections.
After IV’s I come home, go to bed and cuddle with my boxer Bilbo with my heated under-blanket on…
My Hubby if he’s around, My Dad, who lives across the road or my one touch opener if it’s a jar and not a bottle..
Get the RA under control again and help with the pain..
Laying on my heated under-blanket with a boxer snoring next to me with a good movie to watch on TV.. Oh and a large bar of chocolate!
Admitting I can’t do as many things I would like any more…
Worry that my daughter will get it.
It varies depending on how much pain I’m in..Average at the moment is at least 10 per day so far..
Hydro therapy with a therapist who understands RA.
I wish they would how painful, debilitating and soul destroying RA is and not to just dismiss it as ‘Oh only arthritis you should try…’
“Just bog off and get right out of my life for good. I want to have the old ME back thank you! But seeing as you won’t go, I’ll try and fight you to the end.”
“bog off” LOL – I love your Brit phrases!!
1.How many other diagnoses (co-morbidities) do you have?
at present 2
2.When were you diagnosed?
diagnosed 2007 but had pain for many years before
3.How many Rheumatoid Arthritis treatments have you tried?
2 about to try 3rd
4. What kind of a reward do you give yourself after taking any medicine that you hate?
no reward
5.Who helps you open doors or jars when you need it?
anyone who’s around at that time
6. What would your ultimate good rheum doc do?
I have a good rheumy now but the ultimate one would give me a cure
7. What’s your favorite comfort for RA?
Voltaren cream and to be able to relax
8.What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
trying to make people understand about RA and how much pain I have.Also that I can’t do everything I could before.
9.What’s your biggest RA-related fear?
that my children might get it and
not being able to walk or look after myself
10. How many pills do you swallow every day?
pills? 3 + what pain killers I need
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
I live in Spain so we don’t need insurance cover
12. What do you wish people knew about Rheumatoid Arthritis?
I wish that people weren’t so ignorant about RA and thought before they offer stupid comments
13. What would you like to say to your RA?
I hate you just leave me alone
Probably know me as Sandra Cartlidge!
I sure do! 🙂
1. I have low thyroid, hypo-glycemia, and of course RA.
2. I was diagnosed in 2002.
3. I have tried many medications and combinations of medications starting with Vioxx. Remember that one? I am currently on Humira, Arava, Celebrex, and Prednisone. I am also a big believer in vitamins. I take sport vitamins (ironic huh?) They target muscles and joints. I take salmon oil and vitamin D as well.
4. After I give myself a shot, I usually go to bed early. Which is a reward if you have teenagers!
5.Anyone who is in the house with me. Mostly my daughter. I have so many wonderful friends who will open water bottles when I am out with them before I even ask.
6.I have a great Rheumatologist! I am so grateful that he has been so aggressive with medication.
7. My favorite comfort for RA is my heating pad and my knee braces.
8. The hardest thing I’ve done is accepting this disease. However, it has prompted me to accomplish things I wanted to do for fear that I better do it now… I might not be able to do it later. I earned my master’s degree and started a new career.
9. My biggest RA fear is that one of my children will have it.
10. I take way too many pills each day. But I’m grateful that the medicine is available!
11. I just wish my insurance wouldn’t give me the run-around each time I need to go on a new drug!
12. That’s a hard one… I guess I just wish that there was more being done to cure the disease. I ask my doctor every time I go, “When are you going to cure this disease?” He will then talk to me about the latest research but doesn’t see a cure on the immediate horizon.
13. I would say to RA that you will never beat me! I will continue to live my life and be happy in spite of you!
Thanks for your meme, Sarah. Good poing in number 10. So thankful also.
1. How many other diagnoses (co-morbidities) do you have?
Not really sure – Lupus, RA, Mitral Valve Prolapse and hypothyroidism, that I know of now…
2. When were you diagnosed?
Finally diagnosed in early 2009 after decades of symptoms.
3. How many Rheumatoid Arthritis treatments have you tried?
Officially 3 – Enbrel, Simponi and now Cimzia.
4. What kind of a reward do you give yourself after taking any medicine that you hate?
After shots and methotrexate, a long hot shower and a milkshake or smoothie, maybe even some chocolate. Chocolate is always good.
5. Who helps you open doors or jars when you need it?
My son and my daughters are my heroes. They do as much as I will let them.
6. What would your ultimate good rheum doc do?
Doc would ask me where it hurts; ask me about my symptoms & my opinions. Then offer real treatment answers for pain. I agree with Kelly, doc would insist pain be adequately treated.
7. What’s your favorite comfort for RA?
Hot bath or a rub down with linamint (opens sinuses too) and a long nap when possible.
8. What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
Explaining to others about having RA and trying to make them understand I won’t break (usually) but that I do have real limits.
9. What’s your biggest RA-related fear?
That one day I will run out of options and I will live like my Mom had to – just suffer.
10. How many pills do you swallow every day?
I quit counting. It varies. I vitamins are the worst to swallow because they are so large! It’s also amazing how many vitamins are necessary to counter what some of the meds rob from you or just what extra protection your bones need.
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
I agree with Kelly – a quality mattress since solid rest is the best prescription for RA (after treatment). Massage therapy by certified RA therapists would be good too Kelly – where might they come from? Physical therapy for RA patients who still work being available outside of normal working hours.
12. What do you wish people knew about Rheumatoid Arthritis?
Exactly how tough it is to do normal things that most people take for granted.
13. What would you like to say to your RA? I don’t want to die from you like my Mom did. I try very hard each day to take the best care I can despite working full time and raising children. Thanks Kelly for being not only a source of inspiration but a great information resource.
Dear Amy, thanks for answering. :heart: to you. Must be hard thinking about your mom & doing this. Thank you for your support too.
1. How many other diagnoses (co-morbidities) do you have?
I have 5.
2. When were you diagnosed?
Finally diagnosed in early 2007 after 1-1/2 years of symptoms.
3. How many Rheumatoid Arthritis treatments have you tried?
2 so far
4. What kind of a reward do you give yourself after taking any medicine that you hate?
I sit down and relex with my favorite movie and a huge diet coke.
5. Who helps you open doors or jars when you need it?
My college aged boys are my heroes. They are so helpful. Although I am often stubborn and try to do things on my own and usually end up needing their help.
6. What would your ultimate good rheum doc do?
He/She would truly listen to me. Have a genuine concern for me and listen to mt feeling and opinions regarding treatment. Then they treat aggressively as I am comfortable with. Also he/she would insist pain be adequately treated.
7. What’s your favorite comfort for RA?
Sitting with my little doggie. He gives me such joy and comfort as does my big dog. However the little doggie can sit in my lap and the big one can’t. They seem to be really concerned when I am hurting so.
8. What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
Giving myself the Enbrel injections. Learning the my husband has no care and concern for me. I have become a liability he can’t or won’t deal with.
9. What’s your biggest RA-related fear?
That one of my children will get it. That I will become invalid with no husband to care for me. I do not want my boys to be saddled with my care.
10. How many pills do you swallow every day?
Many more than I care to or ever thought I would.
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Quality mattress since solid rest is the best prescription for RA (after treatment). Also, access to heated pools for purpose of physical therapy. And special insoles for my leg stability.
12. What do you wish people knew about Rheumatoid Arthritis?
That it is a chronic disease that is painful and debilitating. That RA is not “arthritis.” That just because I do not look sick doesn’t mean I am not sick. I can put on a good mask most days.
13. What would you like to say to your RA? RA~~You may be in my body but I will not give in to you. I will continue to be a strong, brave RA Warrior until Jesus calls me home.
yay! I just found it right on top of the spam. Not sure why that happened. But I’m glad you let me know! Thanks Cammie.
I am sure I posted my list but I cannot see it?? What am I doing wrong.
I do not see it – I post every comment on the blog. I’ll go through the spam folder to look for it, but you can go ahead & try again – if you are pasting, change one word so that WordPress won’t think it’s a duplicate comment.
1.How many other diagnoses (co-morbidities) do you have?
one, recurrent kidney stones.
2.When were you diagnosed?
Finally diagnosed in 2003 after decades of symptoms.
3.How many Rheumatoid Arthritis treatments have you tried?
All of the biologics except actemra (including a clinical trial with Rituxan and Enbrel at the same time.)
4.What kind of a reward do you give yourself after taking any medicine that you hate?
Panera bread soup and sandwich
5.Who helps you open doors or jars when you need it?
I have my arsenal of opening devices unless one of my kids come over. I also take one of them when I grocery shop to carry heavy things.
6.What would your ultimate good rheum doc do?
Doc would ask me where it hurts; ask me about my symptoms & my opinions. Then as treat aggressively as I am comfortable with. Also doc would insist pain be adequately treated.
7.What’s your favorite comfort for RA?
Hot tub or a lap cat.
8.What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
Having to slow down and rest.Hard to go from energizer bunny to having my batteries half charged.
9.What’s your biggest RA-related fear?
That one of my children will get it, and that my employment/benefits would end.
10.How many pills do you swallow every day?
4 everyday, plus MTX
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Quality mattress since solid rest is the best prescription for RA (after treatment). Massage therapy by certified RA therapists (no, they don’t exist YET) Also, access to heated pools for purpose of physical therapy. Pay for hot tubs/whirlpool tub in house
12.What do you wish people knew about Rheumatoid Arthritis?
How painful it is to have uncontrolled RA or RA damage. That RA is not “arthritis.” How truly brave are the warriors I know. That RA is not a disease I chose to have, it chose me.
13.What would you like to say to your RA? Go Away!! You are the most evil disease known to man. I will fight you in my life or others until the day I die
Thanks, Laurie. I love Panera soup. I used to make the brocolli cheese one – it IS comforting.
OK, here are my Meme answers!
1. How many other diagnoses (co-morbidities) do you have? Osteoarthritis, heart disease, osteoporosis (I’ve lost 5 inches in height!), not sure if this counts as a “morbidity” but I’ve had my entire spine re-built with 6 operations and have metal rods, screws, bolts, etc in my cervical spine; C-3 through C7, Thoracic spine T-4 through T-12, and my entire Lumbar spine has a cage holding it together. I have had torn corneas in both retinas due to the RA and have about 30 “floaters” in my vision. I’ve lost all my teeth due to bone loss and continue to have mouth sores that make it difficult to wear dentures. I’m not sure how to count these!
2. When were you diagnosed? Finally diagnosed in January 2010.
3. How many Rheumatoid Arthritis treatments have you tried? Plaquenil, Methotrexate (the max dose) and Prednisone so far.
4. What kind of a reward do you give yourself after taking any medicine that you hate? Chocolate!
5. Who helps you open doors or jars when you need it? My house-mate when available.
6. What would your ultimate good rheum doc do? Ask me where it hurts the most, take some x-rays of my worst areas, make sure I had enough pain medication and listen!
7. What’s your favorite comfort for RA? My cats. They seem to know where I hurt the most and they lie on those areas and purr. The body heat and minor vibration of the purring is very comforting.
8. What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis? Trying to get my family and friends to take RA seriously and get informed with the facts.
9. What’s your biggest RA-related fear? Being abandoned and left to die alone.
10. How many pills do you swallow every day? OMG you had to make me count. 19 daily and 29 on Fridays.
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients? Access to a heated pool, the many prescription strength vitamins that I’m required to take, and a good mattress.
12. What do you wish people knew about Rheumatoid Arthritis? I wish they knew that it is NOT Arthritis, that it cannot be cured with a special diet or special vitamins and supplements, that it cannot be cured…..period, how painful it is, that it CAN kill you, all the many symptoms that it brings and how every RA patient is different.
13. What would you like to say to your RA?
Get OUT of my body!
Love to all my RA warrior buddies,
Trish
P.S. This is a postscript to my own post. After reading some of the other posts I realized I left out some of my own diagnoses! LOL I also have GERD, Asthma, IBS, vertigo, TMJ, bursitis and of course Depression!
1.How many other diagnoses (co-morbidities) do you have?
NONE..Thank goodness
2.When were you diagnosed?
October 08
3.How many Rheumatoid Arthritis treatments have you tried?
Im on my 5th…I sure hope this one works!!!
4.What kind of a reward do you give yourself after taking any
A smoothie(mango)…and chocolate..yum-o
5.Who helps you open doors or jars when you need it?
My son or daughters are always a great help..husband is as well…when hes home..he works to much!..lol
6.What would your ultimate good rheum doc do?
Treat my pain..and give me the real information!!(up to date info)
7.What’s your favorite comfort for RA?
My furbie kids…my familys total 100% understanding!
8.What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
Starting new meds over and over…making myself keep going on everyday..
9.What’s your biggest RA-related fear?
That one of my children will get it..I’ll die of some weird strange R.A related thing!!
10.How many pills do you swallow every day?
At the moment I refuse pills even vit. I only take advil.
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Hot tub in my back patio.
12.What do you wish people knew about Rheumatoid Arthritis?
How painful it is…Its deadly..its not just in my toe!
13.What would you like to say to your RA? You are the most evil disease known to man…I’m going to kick your ugly butt to the curb and watch you go down the sewer..just where you belong!!!
Kim
1. How many other diagnoses (co-morbidities) do you have? There are many, however I count all of them as part of my rheumatoid arthritis diagnosis, I got it all at the exact same time. RA, fibromyalgia, asthma, scleritis, cricoarytenoid joint in rheumatoid arthritis (causes the hoarseness) and of course fatigue, to name a few…..
1. When were you diagnosed? Diagnosed may 2005, looking back I think I have always had it.
2. How many Rheumatoid Arthritis treatments have you tried? 6.
3. What kind of a reward do you give yourself after taking any medicine that you hate? I allow myself to sleep until I wake up post methotrexate/Enbrel.
4. Who helps you open doors or jars when you need it? my daughter,my son, and sometimes my husband.
5. What would your ultimate good rheum doc do? Would stop trying to put every symptom into some other category, Also doc would insist pain be adequately treated.
6. What’s your favorite comfort for RA? heating blanket set on 1, on my side of the bed, adjust room temp to make comfy, year round, Lucy (our puppy cuddled up near my tummy post mtx/enbrel day.
7. What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis? Mourning the me that has died and will no longer be, embracing and loving who I am and will be.
8. What’s your biggest RA-related fear? That one of my children will get i, that I will die a very ugly death
9. How many pills do you swallow every day? 10 plus eight additional on Fri (mtx)
10. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients? Massage therapy by certified RA therapists (no, they don’t exist YET) Also, access to heated pools for purpose of physical therapy, available anytime, because those of us with RA do not always (ever) need it during banking hours.
11. What do you wish people knew about Rheumatoid Arthritis? How painful it is to have RA, That RA is not “arthritis.” its a complex disease and I AM A WARRIOR. I have the most aggressive form. and I wish you would google it already, so you would at least not look (to me) like a total callous idiot. How truly brave are the warriors I know.
12. What would you like to say to your RA? I hate RA, but…God uses all things for my good, even this. I have more compassion than you will ever know, to the very depths of my soul. So I win! haha
1. How many other diagnoses (co-morbidities) do you have?
Type 1 Diabetes(30 years), hypothyroidism, kidney disease…more
2. When were you diagnosed?
August 2009
3. How many Rheumatoid Arthritis treatments have you tried?
so far just prednisone and methotrexate
4. What kind of a reward do you give yourself after taking any medicine that you hate? The nowledge I am taking care of myself is enough.
5. Who helps you open doors or jars when you need it? My son and sig other.
6. What would your ultimate good rheum doc do? Discover a cure.
7. What’s your favorite comfort for RA? when its 3 o’clock in the morning and I am in the middle of a flare being able to “share” the pain and frustration on FB.
8. What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis? Take control of my own life. I have had GB surgery lost 85 pounds and work out every day.
9. What’s your biggest RA-related fear? disability 🙁
10. How many pills do you swallow every day?a dozen or so, plus 8 on methotrexate days.
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients? massage therapy, life style coaching..
12. What do you wish people knew about Rheumatoid Arthritis?
That it is not OA….it changes you entire being….
13. What would you like to say to your RA? I will fight you with all my might. I would take Diabetes any day over RA. Quit picking on my sister….
Thanks, Gail. I’m glad you could fight your way back with the exercise. Fascinating comments on Diabetes. And here we are arguing for RA to be considered half as serious a disease to the public (on another post today).
1. I have 5 but nobody knows what most of them mean 🙂
2. I was finally diagnosed with RA in March 2010. I just had it for waaaaaaaaay longer than that. There is not a Rheummy Doc in our town that accepts Medicare. So I have to go to Seattle.
3. Well, 3 right now.
4. I like to go ULTA and get a make-over. I just have to do it the same day I take the Methotrexate because for the next couple days after, I am REALLY, REALLY sick.
5. My Larry does it!!!! He is FAB!
6. He would say I know how bad this is! I will do anything I can to get you out of pain and eliminate the sickness.
7. When my kids say, Mom no, no let me do that (housework) you should be resting. (They are 12 and 15.)
8. Deciding whether or not to do Methotrexate since it is a chemo medication. It really scared me. It scared me even more since I have been pretty sick a few days after. Also, I thought about how much I hate my insurance because it won’t cover IV treatments and we just can’t afford to do them.
9. That one of my children will get it and that I will be crippled up like so many other people that I know.
10. Oh lots! I take heart and vascular meds along with vitamins. Let me see, I take 21 pills! Sometimes I think the meds will kill me before the illness.
11. I wish my insurance would cover the Infusion meds. I also wish they would cover a part-time house-keeper since I have alot of trouble these days keeping it up on my own. Some days, I just can’t.
12. How painful it is and that it is not just in my thumb or neck. Also, how it affects all of your other organs as well. Nobody gets it. They really don’t.
13. That it is the worst disease, even over my heart disease! It is the most painful thing that I have ever been through and that I am determined not to let it win. Someday, I do expect there will be commercials out there educating our world to know what it is and maybe teach people to have a little more empathy for one another.
Thanks, Tanya. Cheering here on your #13.
1.How many other diagnoses (co-morbidities) do you have?
4
2.When were you diagnosed?
October 2008
3.How many Rheumatoid Arthritis treatments have you tried?
5
4.What kind of a reward do you give yourself after taking any medicine that you hate?
so far I have tolerated what I have taken fairly well, haven’t tried the injections but they are next. Peanut M&Ms help anything
5.Who helps you open doors or jars when you need it?
my husband and co-workers
6.What would your ultimate good rheum doc do?
when I tell her about something new that has been diagnosed don’t say I am not suprised, I was! Give me more of a heads up and go over test results.
7.What’s your favorite comfort for RA?
seat warmers, hot tub and electric blanket. I also found this summer that the kids’ pool was a help. Only 4 feet deep but enough so I can float and the cool water felt nice.
8.What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
just dealing overall but trying to explain that RA is NOT the samething as that arthritis you have in your knee, elbow etc.
9.What’s your biggest RA-related fear?
not being able to walk, have already had 1 neck surgery and one lumbar surgery (permanent sciatic nerve damage thanks to a doc that didn’t want to work over Christmas)
10.How many pills do you swallow every day?
8 pills 6 days a week and 16 on thursday
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
a heated office chair.
12.What do you wish people knew about Rheumatoid Arthritis?
as much as possible!
13.What would you like to say to your RA? I didn’t ask for this, I don’t want this so please go back to where you came from!
ok…now how do I get to participate in the meme? Thanks so much…
You can fill it out in comments if you like as many have. Just go for it. I think a lot of people also copy -pasted to make it easier. Or you can create a Facebook Note if you do those & put the link here so we can see it. Can’t wait to read it.
Will have to put photo on later, Kelly…in a bit of a hurry today…thank god for electric mixers.
How many other diagnoses (co-morbidities) do you have?
Lung Fibrosis, and now looking for Crohns (or whatever)
When were you diagnosed?
April 6, 2010
How many Rheumatoid Arthritis treatments have you tried?
On 20 mg Methotrexate…was on Plaquenil, but caused major problems…switched me to something else…same problems…so now I am just on Meth and awaiting a Biologic of some unknown name in November. Only reason rheumy said I had to take the Meth was because our health-care system refuses to pay for the Biologics needed for severe RA patients until it is proven that they do not do well on the Meth. Even then, they may change rules around (which changes everyday with the list of meds that they will not help you with) and you can be kicked off of the Biologics. Since it is so expensive, I cannot pay for them. Would you call this a “moral” issue. “With-holding medicines that patients definitely need?”
(Also diagnosed “after decades of symptoms.” Going back to childhood. My aunt told me that I used to scream at night with “growing pains”, was sickly and finally turned up with “something” at age 18 that made me bed-ridden for months, and then disappeared until now.)
What kind of reward do you give yourself after taking any medicine that you hate?
After Methotrexate shot, I sit down with Handel playing and have a Mochachinno…(pretty sick for about a little over a day…)
Who helps you open jars or doors when you need it?
I have some pretty innovative idea’s that work. Vise grips, etc.
What would your ultimate good rheum doc do?
Listen to me when I say there is something wrong. Not tell me that “He would be very surprised if the RA was attacking my lungs” (of course it was and it was proven a month later), and that he would be around for appointments when he is suppose to be.
What’s your favorite comfort for RA?
A hot bath or ice pack. My Shitzu..
What was the hardest thing you have done since being diagnosed with RA?
Getting both shoulders injected with high dose cortisone and the freezing wouldn’t take
What’s your biggest RA related fear?
(Genetics)…my children will inherit it
How many pills do you swallow everyday?
A LOT of vitamins.
Something surprising that you wish that you wish Insurance would cover for Rheumatoid Arthritis patients.
Massage therapy, and many things in Alberta that is not covered by Healthcare.
What do you wish people knew about Rheumatoid Arthritis?
How painful it is, even when you look “just fine” on the outside. That it is a disease that won’t go away on it’s own. That “How hard can it be to turn a doorknob?” really doesn’t make your day.
What would you like to say to your RA?
You are the cruelest disease known to man. I will continue to fight you until the day I die. “Back off, and let me live!”
1. RA, Psoriasis, Fibromyalgia (new dx), Depression, Anxiety
2. Diagnosed 2000 – after multiple doctors – one of which told me, “sometimes in life we just don’t feel as well as we do at other times” Fine,I’m tough, I will just move forward, any idea what I should do about the multiple red swollen joints, (symmetical, I might add), constant fatigue and anemia? Nevermind
3. Sulfasalazine, NSAIDS, Plaquenil, Arava, Enbrel, Humira, Remicade-worked for a year then stopped even with titrating dose up, Methotrxate and Prednisone can only be used short course d/t gastrointestinal bleeding with extended use, Simponi for past year with no results
4. Reward – extra rest after Simponi injection
5. I despise to have to ask for help but I’m blessed with two special daughters and husband that will step in when needed
6. Ultimate doctor – Wow, I guess I’m fortunate, my doc is kind and listens but at the same time tells me he is out of options since I have failed all Biologics, at top dose of Methotrexate and as for pain meds, the 2 pills daily is all the office will prescribe. Wait a minute, I do need to rethink this!
7. RA Comfort – Reliance on the Lord-lots of Prayer, heating pad, rest, being with my girls and husband, and our dog Tucker, a dachshund, who can sense when the pain worsens and will come and sit with me lending his warmth.
8. Hardest thing since RA diagnosis – When I was diagnosed in 2000, I vowed this disease would not keep me from my goals. I was working full-time in the hospital, going to school finishing up required classes for RN program as well as in the Paramedic program. And I did hang in there for a while, but slowly more joints were affected, fatigue and of course a compromised immune system allowed all sorts of illnesses to pop in for a visit – stopped school, took positions with less physical demands until recently, now not able to work – I have worked since I was 12 years old-what use am I to my family if I can’t work? What kind of example does my not working show my girls? How can I fault others for judging me for not working when I am ashamed of it myself?
9. My biggest fear is passing RA to my girls
10. Varies – too many
11. Insurance – Stop making everything such a struggle – prior authorization on tests, prescriptions, etc
12. What do I wish people knew about RA – Take a little time to learn about RA if you have a family member or friend with RA.It is an autoimmune disorder that affects joints, internal organs and causes fatigue, and no, for the last time it is not “just arthritis” that can be cured by taking Tylenol like you do when your knee “bothers you”. That the swollen joints, the limp when I walk, is only the tip of the iceburg. If only you could see on the inside of my body – how maddening the pain and fatigue are. I don’t want to show you my pain. I don’t want you to feel uncomfortable, I want to be my old self with you, to keep things on the surface.I don’t want you to know how worthless I feel when I can’t commit to plans you want to make in a day or two, that RA controls how I feel from hour to hour, much less day to day. I’m not lazy, my body just sometimes shuts down. I want people to know that we don’t give up against RA, we rail against it to the best of our abilities.
13. What would I say to my RA? It may look like I’m down, beaten and broken, you may think you have won, but if you look closer you will see the glint of steel that resides in me. I’m not done fighting, and I never will be.
Hi Rhonda,
Just had to say a couple things: #12 is awesome. Very well said.
Also, as far as this goes: “what use am I to my family if I can’t work?”, I know how you feel! As a man, I am ashamed to even try dating someone, let alone start a family. Women usually frown upon a man without a job. I’ve always been taught that it’s a man’s responsibility to provide for his family. Not that woman can’t be independent, hard working, and take care of herself and her family… That’s just who I am I guess….Son of a coal miner – I’ve just always worked hard. So I know how you feel about not working. But you do have a family already, and I bet you love them to death. That is something that makes you worth quite a bit. Just loving them and supporting them, providing direction and structure for your kids, is a job that is SO important. You can give them priceless advice – especially since you deall with so much, which gives you great perspective. Not just important for your family, but for society as well. So you are far from worthless.
Kelly,
I live in Orlando and was diagnosed with RA 2 weeks ago. A nurse friend of mine found your blog for me as we’ve both been researching. I’ve been overwhelmed by a deluge of information re: treatments, but I’d love to try the natural route before I go on Methotrexate. Would love to meet up with you if I could to hear your thoughts!
Love,
Gretchen
Hi Gretchen, if you haven’t already, please email me so we can get in touch. I’ve been a bit overwhelmed lately traveling, but I’m thrilled to hear from you. I’ll leave you some links here about your question too. Link to an RA 101 page here and a list of 10 related articles here. Also, have you read through the RA Map? That is like a roadmap for the newly diagnosed. email: kelly @www.rawarrior.com
1: 3others 2. Oct 09 3.so far only 3 4.rest. 5.my teenage sons are awesome, most of the time 6.treat ME and symptoms not numbers and LISTEN to my input 7. Heat pad and Australian dream cream 8.getting people around me to understand I don’t just have ARTHRITIS! 9. That it will affect my organs and that my buys will inherit. 10.on average 7 11. Mattresses and hot tubs! 12.how we painfully struggle thru each day BUT don’t always look sick!13. I don’t hate many things BUT I hate you and we are goon to fight till WE knock you off!!! ****great idea Kelly!
Thanks, Renee. 😀
Kelly,
Just had to let you know how much this website has been a literal life saver since I discovered it recently. I have been doing a lot of valley walking in the last weeks. You have been a blessing from our Lord. Thank you from the bottom of my RA Warrior heart!
Thank you Rhonda for taking time to say that. You can’t imagine what it means to me.
already did my meme, just wanted to say that I’ve learned a little about my fellow warriors, laughed a lot, and once again felt like I’m not alone in this fight. This was a great idea!
What a great name for an RA site! I have been dealing with RA since 2007. Just long enough to have been through a number of DMARD’s. Now Simponi and Methotrexate injections. Seems like a fist full of vitamins and supplements. Simponi once a month, methotrexate weekly.
I had to laugh about the mattress. We bought a new one a few months ago because my wife couldn’t get a good nights sleep. What a blessing that mattress has been for my own rest.
The week I inject the Simponi and Methotrexte I curl up on that mattress for a few hours, then a few more… and then it is time for bed 🙂
While not co-morbidities, I have had osteoarthritis for years in my knees and hands. Have had double knee replacement and basal thumb joint rebuilt in both hands. I also had breast cancer 9 years ago, but clear now.
Fall of 2008, almost immediately after a major flare. In hindsight, I had had minor symptoms for about a year earlier.
I went immediately to plaquenil and mtx, followed later with Embrel. For the most part, this is working.
No reward. I am not wild about the weekly Embrel injections, but I just do it and try to move on. My mtx is oral.
Husband Ted.
1)Treat disease aggressively; 2) treat pain as aggressively as possible without damage; 3)oversee possible related complications and refer me to specialists in those fields (eyes, lungs, heart, osteoporosis, hand and foot specialists, voice therapy, etc.); 4) treat me as a partner in this fight (not all-knowing doctor) – in that order. My current doc is superb at the first three. Not so much the last. There are always trade offs.
I try and do things that boost the endorphines and seratonins like listening to or participating in music or riding on the back of our motorcycle.
I am still trying to get my arms around the fact that I have this disease.
The unkown future.
Currently 12, except one day a week when I take 10 additional mtx.
Not really surpising – but I wish insurance companies would not give pts a hard time with early aggresive treatment and stop insisting on the pyramid – this is costing lives.
That RA is a killer systemic disease – not arthritis.
1.How many other diagnoses (co-morbidities) do you have?
Hashimoto’s, depression, high blood pressure and high cholesterol, plus numerous side effects of RA med’s.
2.When were you diagnosed?
Almost eleven years ago, I was in my prime. I was happily married, working full-time, raising two young children, having the time of my life. Then I was knocked off my feet by this awful disease (a gift from the devil.)
3.How many Rheumatoid Arthritis treatments have you tried?
I’m on my 7th biologic (yes that says seven!)
4.What kind of a reward do you give yourself after taking any medicine that you hate?
There is a great Thai place across the street from my rheumy’s office. I always try to reward myself after an infusion or any visit that involves a needle.
5.Who helps you open doors or jars when you need it?
My husband and two wonderful sons, ages 17 & 20.
6.What would your ultimate good rheum doc do?
Get out the magic wand and cure us all! Someone who cares how I am doing emotionally and willing to treat me as aggressively as I want.
7.What’s your favorite comfort for RA?
A hug from my husband and/or a hot bath.
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Quitting a job that I truly loved. Realizing I will never work at a real job ever again. Missing my sons soccer games because I don’t feel well enough to attend. Using a cane.
9.What’s your biggest RA-related fear?
That I will die from a heart attack. My dad has RA and he has survived four so far. Also, that my children will get it.
10.How many pills do you swallow every day?
Not as many as I should. I sometimes skip the supplements (vitamins, etc.) because I just can’t take one more pill.
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Someone to come and clean my house! I hate not being able to keep a nice, clean home like I use to.
12.What do you wish people knew about Rheumatoid Arthritis?
That RA is not your grandma’s “arthritis”!! How painful and tiring it is to have RA. That RA is not for sissies!
13.What would you like to say to your RA?
I hate you! I hate you! I hate you! I hate what you have taken from me and my family! I took such good care of myself for so many years-why did you pick me? My obituary will read that I went kicking and screaming, never giving up my fight against you.
Thank you, Shannon. I loved reading this. Had to laugh at #12 since that phrase is already recorded in my new video! LOL. 😀
My husband and I both have RA. Mine is mild his is severe and he is very badlt crippled… Right now he is in the hospital for the past 5 days with a severe case of shingles in his right eye…anyone know if this is a complication from RA???…It took the doctors 3 days to acknowledge that the pain in his head and eye was severe and they finally came up with this diagnoses..
I’m so sorry for him, Elaine. That must be awful. I know shingles happens w/ RA, but I hadn’t realized it could be in his eye & they could not even tell!! Please tell him our best wishes for him to get well soon.
1. How many other diagnoses (co-morbidities) do you have?
–– Half dozen or so. Worst so is severe anemia.
2. When were you diagnosed?
–– I’ve had moderately severe psoriasis since 1984. I was diagnosed with RA in 2007 but full onset seems to have occurred earlier. I think the full onset came following the trauma of a paraglider crash (multiple broken bones) in 2004. Two-plus years of misdiagnoses followed before I found a Dr. smart enough to put all the symptoms together and make the right call.
3. How many Rheumatoid Arthritis treatments have you tried?
–– Knowing this is a life-long battle, I wanted to start with the mildest treatments to try to minimize long term side effects. Maybe not a good idea, but seemed reasonable at the time. So I spent 2.5 years trying ever increasing dozes of Sulfasalazine and hydroxichloriquine along with predinose. Failure. Now on MTX and prednisone.
4. What kind of a reward do you give yourself after taking any medicine that you hate?
–– Easy day off – no serious writing, no thoughts of deadlines.
5. Who helps you open doors or jars when you need it?
–– My wife/partner: Donna.
6. What would your ultimate good rheum doc do?
–– LISTEN. Treat the patient, not his/her preconceptions about the disease. That said, I think I’ve found an amazing rheumy. She looked at my charts, does a quick physical check, then sits and talks to me as long as she think necessary. Initial meeting was over an hour. She then shared her cell # and personal email address with me. In the two months since I first met her, she’s called twice to check on me. Awesome.
7. What’s your favorite comfort for RA?
–– Honestly (and this could seem odd to many) my greatest comfort is a walk in the woods with my dog, Sophie. Even when the pain is at its worst, this is the toxic that soothes my soul.
8. What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
–– Giving up on things I love. I no longer fly my paraglider. I gave up alpine climbing (besides loss of finger strength/mobility, anemia has severely restricted me ability to be physically active at altitude).
9. What’s your biggest RA-related fear?
–– That sooner, rather than later, I’ll lose my access to the places I love – the backcountry wilderness areas in the mountains. Places that can only be accessed on foot, along primitive trails.
10. How many pills do you swallow every day?
–– It varies. On average 5. (Down from a high of 9)
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
–– Therapy dogs. I truly believe the unconditional love of a pet can help anyone get through life’s worst moments. And God knows we here have some of lifes’ WORST moments!
12. What do you wish people knew about Rheumatoid Arthritis?
–– No, I can’t “get better” by changing my diet!! No, you don’t have the “same thing” in your creaky knee. No, just because I’m going about my daily life, trying to live normally, doesn’t mean I’m exaggerating my pain – it just means I’m living through my pain.
13. What would you like to say to your RA?
–– If you weren’t such a coward, attacking me from your hiding place within my body, I’d take you out to the woodshed and kick your ass!
Dan, this is fantastic! I am *so* going to try to get docs to read this page of memes! & Your doc sounds like like *the* model doc – whoohoo!
I want your doctor!!!! I wonder if we could clone her? LOL The last time I went to my Rheumie, I took a list of questions and told him up front. He was quite put off by this and told me that these kinds of things put him off his schedule and everyone has to wait longer. (I was speechless since I had waited over two hours (the average time) to see him myself!) Next visit I’m taking your meme to him and handing it over for him to read “in his free time”. HAA!
Dan, you have one of the best responses to this exercise and I’ve read them all. Thanks for sharing!
Trish
1.How many other diagnoses (co-morbidities) do you have?
Just rhematoid right now
2.When were you diagnosed?
I was diagnosed in 2001.
3.How many Rheumatoid Arthritis treatments have you tried?
too many to count
4.What kind of a reward do you give yourself after taking any medicine that you hate?
chocolate
5.Who helps you open doors or jars when you need it?
My husband and coworkers
6.What would your ultimate good rheum doc do?
He hates to see me suffer so he asks how I am and gives
me something to make me comfortable.
7.What’s your favorite comfort for RA?
Having my dogs lie with me
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Cleaning my house and walking a tread mill
9.What’s your biggest RA-related fear?
That one of my children will get it ditto
10.How many pills do you swallow every day?
It varies. I need more vitamins than I want to swallow ditto
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Quality mattress since solid rest is the best prescription for RA (after treatment). Massage therapy by certified RA therapists (no, they don’t exist YET) Also, access to heated pools for purpose of physical therapy. I agree
12.What do you wish people knew about Rheumatoid Arthritis?
How painful it is to have uncontrolled RA or RA damage. That RA is not “arthritis.” I wish they could feel what we feel for one day
13.What would you like to say to your RA? I have been a good person my whole life and this is a punishment I don’t deserve but I will smile everyday despite how much pain you put me thru
Thanks, Patty. 🙂
!. How many other diagnoses (co-morbidities) do you have?
lupus, fibromyalgia, ibs, celiac, hashimoto’s, bipolar
2. When were you diagnosed?
diagnosed with lupus 30 yrs ago, fibro 15 yrs, RA was just diagnosed a couple of weeks ago
3. How many Rheumatoid Arthritis treatments have you tried?
None yet. I am on Plaquenil and diclofenac already for lupus and I see my rheumy in 3 weeks to see what the next step is.
4. What kind of a reward do you give yourself after taking any medicine that you hate?
5. Who helps you open doors or jars when you need it?
My hubby! He takes great care of me.
6. What would your ultimate good rheum doc do?
Listen to me and understand that I know my body and that I am conversant on my illnesses, so treat me like I am a partner in my own healthcare.
7. What’s your favorite comfort for RA?
Hot bath and heating pad
8. What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Right now, since I am newly diagnosed, it is making sure that my doctor includes me in my own care and that we make decisions together.
9. What’s your biggest RA-related fear?
Deformity and pain. I grew up with a couple of women that were devastated by the disease.
10. How many pills do you swallow every day?
Too many to count if include vitamins and supplements.
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
I know many of you don’t agree, but I wish it would cover naturopathy. I want to have joint care by MD and ND.
12. What do you wish people knew about Rheumatoid Arthritis?
How frustrating it is to be in constant pain and not be able to do all the things a healthy person my age could do.
13. What would you like to say to your RA?
I am in control, not you!
Wow. Good luck with your new diagnosis Tamara. You have a lot to manage.
1)I have High BP, High Cholesterol, Depression, Anxiety, Fibromyalgia, OA of the spine, RA
2)September 2008
3)4
4)I go shopping. I live in the country and have to go to the big city to get my IV
5)Me and my jar opening machine
6)He would listen and believe what I say over the blood tests
7)Curl up in my favorite blanket with hot cocoa and relax while watching a movie
8)Injecting myself. At first that is a weird feeling
9)I will become completely dependent on someone
10)24 in the morning and 10 in the evening and 5 at beadtime
11)Arthritis gloves.
12)It is not the same as OA
13)Would you make up your mind what you want to be when you grow up? This mutating is killing me. LOL
Thank you Maria. Good idea with the gloves. LOL at # 13.
1.How many other diagnoses (co-morbidities) do you have?
none
2.When were you diagnosed?
2006 after 3 years of symptoms
3.How many Rheumatoid Arthritis treatments have you tried?
medical? only one, methotrexate, but i have other approaches to healing
4.What kind of a reward do you give yourself after taking any medicine that you hate?
none, I take low dose and have no side effects; i am grateful for a medication that has participated in my healing
5.Who helps you open doors or jars when you need it?
My teenage son, or other parts of my body.
6.What would your ultimate good rheum doc do?
View me as a whole person (body/mind/spirit), aknowledge all alternative approaches that i have taken and respect them and aknowledge that they are as big contributors to my healing as the meds, maybe even bigger.
7.What’s your favorite comfort for RA?
A lavendar-filled soft pillow heated 3 min in the microwave
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Accepted it
9.What’s your biggest RA-related fear?
to be severely handicapped and therefore lose freedom
10.How many pills do you swallow every day?
4 pills per week
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Organic fruits, vegetables and grains, as i believe a healthy diet plays a major role in healing;
and alternative approaches/integrative medicine
12.What do you wish people knew about Rheumatoid Arthritis?
How serious and painful it is, and how it can strike at any age
13.What would you like to say to your RA?
That I haven’t had symptoms in more than 2 years and seem to have found my balance and perhaps the keys to my healing. Therefore i like to tell all people with RA that is it is possible to heal (which nobody, especially docs, tell them)
Thanks, Iza.
1.How many other diagnoses (co-morbidities) do you have?
8 that I know of
2.When were you diagnosed?
2007, Right after the death of my father.
3.How many Rheumatoid Arthritis treatments have you tried?
7
4.What kind of a reward do you give yourself after taking any medicine that you hate?
After my Orencia treatments I only have a taste for McDonalds french Fries! So that is my treat! I also take long hot baths in the Jacuzzi tub.
5.Who helps you open doors or jars when you need it?
My family is a great help to me when I need it.
6.What would your ultimate good rheum doc do?
Really listen to what I am saying.
7.What’s your favorite comfort for RA?
The Jacuzzi tub, and my electric blanket. Also having my dog! She is such a great companion for me, she seems to understand when I am in pain.
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Learning to move past the symptoms. Traveling by myself. And now going through a divorce.
9.What’s your biggest RA-related fear?
That my daughter will get it and that one day the treatments will no longer work.
10.How many pills do you swallow every day?
17 and then on my mtx days I take 25
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Mattresses that are designed for better sleep. Excercise designed just for RA.
12.What do you wish people knew about Rheumatoid Arthritis?
How extensive RA is. That it is not Arthritis. How awful we can feel on any given day so when I have to cancel on them they understood better.
13.What would you like to say to your RA? You do not have the final say in my life! You are evil and I hate you. But I will fight you with all that I have in me.
That is so funny Donna. I bet the salty french fries hit the spot!
1. How many other diagnoses (co-morbidities) do you have?
I have 2 waiting on a third…
When were you diagnosed?
I was first diagnosed with Sjogren’s Syndrom in Jan 09. I was diagnosed with RA in Nov 09 shortly after both of my parents died. I guess the stress set it off.
How many Rheumatoid Arthritis treatments have you tried?
I have tried and am still on Plaqunil, Prednisone, MTX and Enbrel.
What kind of a reward do you give yourself after taking any of the drugs you hate taking?
C-H-O-C-O-L-A-T-E solves everything..!!!
Who helps you open doors or jars when you need it?
My wonderful husband Mark.. He is very supportive and I couldn’t have done it/still doing it, without him..<3
What would your ultimate good rheum doc do?
Listen attentively to what I say and answer me in a way I understand. Answers every question without making me feel I am complaining… I have that Rheumy… Dr Jonathan Greer. Boynton Beach Florida..
What’s your favorite comfort for RA?
Lot's of pillows, heating pad and of course CHOCOLATE…
What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Working fulltime.
What’s your biggest RA-related fear?
Becoming disabled and not being able to care for myself
How many pills do you swallow every day?
9 prescription – 12 Supplements – up to 5 as needed.
Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
TemperPedic or other quality mattress that takes the pressure off joints, weekly massage, physical therapy when ever needed – No questions asked..! Indoor heated exercise pool and whirlpool.
What do you wish people knew about Rheumatoid Arthritis? Although I don't look sick I am. How much it hurts and that when I say I can't do something and ask for help, I'm not looked at like all I do is complain or that I'm trying to get out of doing something.
What would you like to say to your RA? You will not win..!!! God is in Control.!!!
Wonderful Laurie. Thanks.
1.How many other diagnoses (co-morbidities) do you have?
I’m one of those mixed connective tissue kind of people. A little of this, a little of that. Plus it’s palindromic, so I’m always surprised when I wake up in the morning. I also have IBS, migraines, TMJ. You can also write your name on my skin with the tip of your fingers and I’ll get welts in the shape of whatever you write – it lasts for hours. I’m SO talented( I forgot what that’s called)
2.When were you diagnosed?
2009. My Mother had RA really bad.(Train wreck) My older brother has Polymyositis(a really nasty disease, plus gout)You can’t tell me this is not inherited
3.How many Rheumatoid Arthritis treatments have you tried?
2
4.What kind of a reward do you give yourself after taking any medicine that you hate?
I shove anything I find in the refrigerator in my mouth just to get rid of the taste.
5.Who helps you open doors or jars when you need it?
My husband.
6.What would your ultimate good rheum doc do?
I have a Great Doctor.
7.What’s your favorite comfort for RA
Ice
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Worked full time for 3 years with a phycho boss. 9.What’s your biggest RA-related fear?
Being a burden.
10.How many pills do you swallow every day?
9 and once a week 10 1/2 11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Cleaning Service
12.What do you wish people knew about Rheumatoid Arthritis?
That you are always in pain somewhere in your body, you always feel like you’re coming down with the flu, You don’t want to take a nap, you HAVE to take a nap. I also wish that people for just ONE day of thier lives would have RA symptoms just to know what we go through.
13.What would you like to say to your RA?
I’m still in charge, Dude.
1. None thus far but they keep testing me for other stuff.
2. July 2010 but I have had symptoms ever since I can remember.
3. 2
4. Cupcake
5. My wonderful boyfriend
6. He would take the time to talk to me and find out what is going on with me and what I am comfortable with treatment wise. They would also worry about the pain and return phone calls.
7. A massage from my boyfriend or even just cuddling with him.
8. Helped my friend and family understand and coping myself. I still am going through the 5 stages. Also changing my career path.
9. That it will attack my heart or I wont be able to have kids because all the medicine.
10. 14 on a regular day… 22 on sundays
11. Massages
12. What it does to your body and spirit.
13. Go pick on someone your own size!!!
1. How many other diagnoses (co-morbidities) do you have?
JRA, Osteoporosis and quite a few more.
2. When were you diagnosed?
41 years ago in the early 1960’s.
3. How many Rheumatoid Arthritis treatments have you tried?
Wow this is a hard one to answer since I have had it since I was 7 yrs old, I can say one of the most painful as a child was the Gold shots. I have probably tried over 50+ treatments.
4. What kind of a reward do you give yourself after taking any medicine that you hate?
Chocolate (which I know I probably shouldn’t lol)
5. Who helps you open doors or jars when you need it?
My 19 yr old son who is always willing to help his Mom.
6. What would your ultimate good rheum doc do?
Do the things I ask especially if I am having pain in a different area, and not just tell me “that’s just your arthritis.”
7. What’s your favorite comfort for RA?
Laying down reading a book, or snuggling with my cats.
8. What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Coping with all that arthritis can take away, such as more and more of your mobility.
9. What’s your biggest RA-related fear?
That my son may get it!
10. How many pills do you swallow every day?
apprx. 18 and Remicade IV every 7 weeks.
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Aquatics and Acupuncture
12. What do you wish people knew about Rheumatoid Arthritis?
What Rheumatoid Arthritis really is and the toll it can take on your body.
13. What would you like to say to your RA?
I truly dislike you and I wish there was no such thing as RA!
1. How many other diagnoses (co-morbidities) do you have?
At least half a dozen
2. When were you diagnosed? Diagnosed about 15 years ago, official diagnosis 10 years ago. Have had RA since I was a kid.
3. How many Rheumatoid Arthritis treatments have you tried? 4 that I can think of right now.
4. What kind of a reward do you give yourself after taking any medicine that you hate? Nothing. To do so would have me living in a constant state of rewards.
5. Who helps you open doors or jars when you need it? A friend or my sister but I live alone so if I can’t open something I usually just do without whatever it is.
6. What would your ultimate good rheum doc do? One who would listen and not reject symptoms out of hand
A Dr who does not rely totally on so called blood tests to diagnose RA. It takes very little research to learn how unreliable current blood tests are.
One who would treat my RA with drugs that are proven and have known side effectsnot just the latest, greatest and most expensive drugs that have no track record of being useful and have unknown side effects
He/she would have to have some empathy when giving injections or doing surgeries and such that are painful. Need to be attentive to the level of discomfort I am feeling.
One who aggressively treats pain. The disease is bad enough without having to live in a constant state of pain just because some Dr is afraid to treat pain. This is a horribly painful illness and it is my opinion any Dr who does not aggressively manage their RA patients for pain is not deserving of the title physician and certainly is not deserving of having me as a patient.
7. What’s your favorite comfort for RA? Having someone fuss over me just a little bit to help make me comfortable when I am having a flair. Not a thing that ever happens.
8. What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis? Dealing with insurance companies and trying to get others to understand that I have a chronic illness that I cannot simply ignore, that cannot at this time be ‘cured’, that is not the same as osteoarthritis and an illness that cannot be cured with whatever concoction that some snake oil salesman is hawking.
9. What’s your biggest RA-related fear? Do you mean other than being confined to a wheelchair or having to live in a long term care facility?
10. How many pills do you swallow every day? Enough that a cold chill has been known to make me rattle.
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Lift assist recliners, lift assist beds, lifts to assist one in getting in and out of a vehicle any device that assists with normal everyday living, jar openers, grippers, joint support devices, mobility devices, mattresses, hearing aids, certain over the counter meds such as prilosec, hot tubs or whirlpool tubs
12. What do you wish people knew about Rheumatoid Arthritis? I wish people knew as much about RA as they do PMS or ED. That people would learn to understand that RA is an autoimmune disease just the same as diabetes is an autoimmune disease.
13. What would you like to say to your RA?
Why don’t you change your name to something more catchy and descriptive like Extremely Painful and Disabling Bone Eating Syndrome
Very nicely done, Bud. #6 is so helpful & number 13 is LOL funny.
After a couple of months of reading, reading and more reading, I stepped into the big world of posting on the Facebook page. I don’t know why I feel compelled to write here but I do. Maybe I just need to ‘belong’ somewhere with people who ‘get’ me. It is weird though because I prefer to avoid the ‘illness’ and pretend that all is well…
1.How many other diagnoses (co-morbidities) do you have?
I wasn’t sure until I read other responses…several. ME/CFS, a non-specific balance disorder, IBS, irritable bladder, TMJ, osteopoesis, vitamin D deficiency, depression, anxiety.
2.When were you diagnosed?
I was diagnosed sero-neg RA in June 2010 but have experienced its symptoms for many years. I believe my immune system suffered a catastrophic, unexplained event that resulted in an acute inflammation of my liver in 1990. I have not lived a normal, pain-free life since then.
3.How many Rheumatoid Arthritis treatments have you tried?
Officially, only one so far. I am on Plaquenil. But I have been taking a variety of NSAIDS and pain relievers for 20+ years.
4.What kind of a reward do you give yourself after taking any medicine that you hate?
Well…I love chocolate.
5.Who helps you open doors or jars when you need it?
I have the most helpful family…we have been dealing with my difficulties for a long time. So I just have to ask and someone does for me. I also have this great jar-grabbing gadget that is attached under my upper cabinets…made by Pampered Chef.
6.What would your ultimate good rheum doc do?
I am so new to this. My RA doctor is very kind. He did a very thorough yet so very gentle exam. He listened to me and my complaints. I never felt patronised. After 20 years of auto-immune disease and all its weirdness, it felt good to have someone in the medical profession listen to me and take my concerns seriously.
7.What’s your favorite comfort for RA?
A really warm bath. With bubbles.
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Compared to some of the things that others on this site have had to do? I haven’t faced some of those challenges yet. But the hardest thing in my journey so far was being told I could no practice my profession as an RN. I was forced to no longer work. I was 38.
9.What’s your biggest RA-related fear?
We have been adjusted to my long-term disability for many years (I have been home for almost 13 years) but I worry about how much worse it’s going to get. I have no idea…so it’s one day at a time, I guess.
10.How many pills do you swallow every day?
8 every morning, 7 with my supper and 3 at bedtime. Plus 3 calcium/vit D chewies everyday.
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Any supportive devices that make our day to day lives easier to negotiate whether it’s some tool or lightweight but warm bedding. Regularly scheduled days at the spa. A deep soaker tub. Unlimited supplies of chocolate.
12.What do you wish people knew about Rheumatoid Arthritis?
That it is a horrifying diagnosis that can insidiously cause irreversible damage throughout the body and has the potential to cause life-threatenting complications. That it is more than a sore knee or shoulder. That it is not an invisible diease if people just opened their eyes and hearts. That I don’t have to validate its presence for anyone. It’s real enough. That people I have ‘met’ who bash on with it are the bravest of the brave.
13.What would you like to say to your RA?
At first I was relieved to know that you were not hepatitis C but now that I know more about you, I want you to know that I have the best husband, the best kids and the most loving support system in place and that I can handle anything you pitch at me…and I will fight you every step of the way. I also think you need a new name, one that reveals upfront what a sneaky bastard you truly are. That alone will make it easier for many who have to explain themselves to insensitive people when they really need to be using their valuable energy to fight you.
Well, babsrama, I’m sure glad you spoke up. There’s no other way I’d know about you! So welcome to the blog!
It’s enjoyable to see the picture of each one of you in the meme. I’d forgotten about the calcium candies & I’ve been really naughty lately about swallowing those horsepills so I’ll get the candies. 😀
I agree with a lot of your answers, but #12 especially right now. The more of them I know, the more brave I think RA patients are. By the way: have you noticed how many of them were nurses?
Ah Kelly, thank you for such a nice welcome. I love having a cuppa and this seemed like a lovely place to make a nooby post. 😛
I did notice as I read through the memes and other posts on the blog that there are a lot of nurses affected. I know of similar patterns with ME/CFS as well. There’s no doubt that the physical and emotional demands of the profession take their toll but that can happen in many other professions as well. I know in nursing, especially before the days of universal precautions, we were exposured to all sorts of things…drugs, environment, bacteria, viruses, radioactive isotopes, body fluids. I was bare-hand trained, gloves were rarely used for everyday care. Who knows what factor or combination of factors have contributed to the onset of a dysfunctional immune system. I just know I have one.
I would like to add my thanks for being such a positive inspiration to so many of us who are wandering in a sea of ‘i don’t know what to do…’ thoughts. I am glad that I stumbled upon this site. Talk about brave. Your strength and support is contagious! Thank you.
Oh…and those chewies are WAAAAY better than the ghastly giant pills, though they are more costly. But I would rather pay more for something remotely chocolate and easy to swallow than be trying to gag back enormous hunks of chalk!
Are there any singers on this blog among the warriors? If so, how do you cope since RA affects the larynx?