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. None
2. 2004, Seven months after the birth of my son. I had a C~section which they feel is what sparked the RA.
3. 4 or 5
4. Any kind of sweet. chocolate is a favorite.
5. My loving husband helps me so much and my 6 year old will help with opening doors and such. God bless them.
6. I would like my doc to just give me a hug, I know that he is doing the best he can but I don’t know if he knows how much the RA makes me sad.
7. I love a hot bath. My husband put in a 6 foot jet bath for me and I love it. Just wish I felt like I could get into it at the end of the day.
8. Admitted that I have it to people who I am just becoming friends with. I don’t have any physical signs of RA but I am limited to what I can do and I don’t feel well a lot of times so having to explain this is hard.
9. My RA fear is that someday I will not be able to be there for my son. I truly don’t want to miss out on anything that he does.
10. It varies but I know that I hate it when I take my MTX on Wed night. I think it adds up to 9 pills on that night.
11. Massage, Yoga, Reiki etc..
12. That even though I look like I don’t hurt I do. I am trying to put on a brave face for you so that you will not be uncomfortable around me.
13. I would like to tell my RA that you might have put me on disablity and I might not be able to work and do the things that I use to but don’t for a minute think that you will control me. I will always fight you!!!
This was great and so much fun for I got to get somethings off my chest. I need to look into myself and know that this sucks YES but I will fight it and I will win.
Thanks for playing, Amy. I’m glad to know about you! :heart:
1.How many other diagnoses (co-morbidities) do you have?
2 that I am aware of
.
2.When were you diagnosed?
2008 after 1 year struggling after my hysterectomy.
3.How many Rheumatoid Arthritis treatments have you tried?
Too many.
Oh ok, …5.
4.What kind of a reward do you give yourself after taking any medicine that you hate?
Chocolate afer my Humaria shots.
5.Who helps you open doors or jars when you need it?
My grandmother got me a great contraption so I don’t have to ask for help in that area right now.
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 without the long lectures on becoming addicted to pain meds, I need them darnit.
7.What’s your favorite comfort for RA?
my heating pad and blanket
.
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
learning how to inject myself without crying
.
9.What’s your biggest RA-related fear?
That one of my children will get it and no longer being able to work.
10.How many pills do you swallow every day?
It varies. I need more vitamins than I want to swallow.
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.
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, and don’t compare your arthritis to my RA.
13.What would you like to say to your RA? I will not give in to your painful debilitating symptoms and I will continue to fight as long as I have breath to fight with.
thanks, Shari 😀
1. How many other diagnoses (co-morbidities) do you have?
only 1, Uveitis/Iritis
2. When were you diagnosed?
first saw a doc in 92, diagnosed in 97
3. How many Rheumatoid Arthritis treatments have you tried?
Too many. NSAIDS, methotrexate, plaquenill, prednisone and arava.
4. What kind of a reward do you give yourself after taking any medicine that you hate?
round of golf. usually only 9 holes
5. Who helps you open doors or jars when you need it? screwdrivers, channel lock pliers are helpful in the kitchen. my friends help a lot with groceries.
6. What would your ultimate good rheum doc do?
i lucked out and found my doc while delivering subs. Dr Juan Bustillo Ft Myers, Fl
7. What’s your favorite comfort for RA?
when i had the access, a hot tub. now my lazy boy.
8. What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
continued my drumming hobby. built a website for unsigned and indie bands
9. What’s your biggest RA-related fear?
that i might possibly one day not walk
10. How many pills do you swallow every day?
prednisone, ibuprophen, multi vitamin, and a stomach coating
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
upgrade coach tix to 1st class, i cant sit in coach for longer than an hour. hot tub and installation. massage therapists.
12. What do you wish people knew about Rheumatoid Arthritis?
what its like not being able to do the simplest of things on some days.
13. What would you like to say to your RA? dont ever think for one second that you will ever stop me from playing my drums, you may limit me, but you will never stop me. One day I will beat you!!
love the answers to #11 Rob! oh yeah! Number 12 is square on also.
1.How many other diagnoses (co-morbidities) do you have?
10
2.When were you diagnosed?
May 4,2009
3.How many Rheumatoid Arthritis treatments have you tried?
1- Can’t find a doctor willing to risk any others.
4.What kind of a reward do you give yourself after taking any medicine that you hate?
Can’t reward myself three times a day, but I get Chinese food once a month.
5.Who helps you open doors or jars when you need it?
Noone, I’m alone.
6.What would your ultimate good rheum doc do?
Discuss the risk benefits with me, but ultimately recognize that it is MY risk benefit and treat me if I’m willin to take the risk. Pain control is another biggie. I’m really tired of the pain.
7.What’s your favorite comfort for RA?
Electric blanket and my recliner.
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Activities of Daily Living.
9.What’s your biggest RA-related fear?
Heart involvement.
10.How many pills do you swallow every day?
30 about varies alittle with pain med usage.
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Access to heated pools for purpose of physical therapy.
12.What do you wish people knew about Rheumatoid Arthritis?
That it is a slow Painful killer.
13.What would you like to say to your RA?
I hate you, you aren’t welcome in my life, go away.
Thanks, Tanya. wow, on # 1. Hugs to you.
I actually miss counted Kelly. 1. cardio-neurogenic syncopy 2. wolfe–parkinson-white syndrome 3. congential aortic and pulmanry valve malformations. 4. non-alcoholic fatty liver, 5. degenerative disc disease 6.depression 7.GERD 8. vitamin d deficency 9. mild rstrictive airway disease 10. sleep apnea 11. mild diabetes (from prednisone) 12 positive TB converter 13. Ovarian cancer survivor. 14. Osteopenia
Tanya,
I too have several comorbidities….R/A , hypothyroidism, pulmonary embolis, pericarditis, ovarian cancer, sleep apnea, itp, rls, diabetes/ neuropathy, GERD….and I think I also have Fibro but have not been diagnosed with it yet…so I feel your pain!!
1. fibromyalgia, gastritis,bipolar depression, anxiety
2. 2009. i have non serogenic ra so i kept getting misdiagnosed.
3. alot
4. nothing
5. my 7 and 9 year old and me.
6. be more informative not like nothing is working and we’ll have to try injections next time. just dont be a drug dealer!
7. facebook
8. finding a doctor that didnt drug me up. i cant raise kids as high as a kite. plus i hate taking meds.
9. that my kids will suffer from it.\
10. varies. i only take the pain pills when in severe pain.
11. so far the things prescribed are covered.
12. that u cant see my pain, but it is there. do not call me lazy. my sister wont talk to me since i am trying for disability. she thinks i am lazy. also, i easily get sick.
13. go away and take the low immune system with u.
Sorry about your sister, Sheila. I know what that’s like.
Katie Lee’s RA Meme here on Facebook – click here. :coffee:
1. None yet.
2. June 2010
3. 1 DMARD
4. After MTX I like to have a cherry soda. It cuts through the funny taste it causes in my mouth.
5. This isn’t a problem for me yet. It’s still early.
6. I would rather have a rheum magician that would take it all away. I think I have a good doc. So far I’m happy with him. I would like more/adequate pain management options though.
7. Hot summer days in the sunshine. Otherwise a hot shower or bath or time under the electric blanket on full blast.
8. Only trivial things, I haven’t done too much worth mentioning.
9. Paralysis.
10. Minimum 10
11. Don’t know
12. It doesn’t just affect the hands. How much it hurts every day. The things we deal with pain, fatigue, fevers, etc.
13. What I would really like to say is not appropriate for polite conversation. I watched It’s a Great Pumpkin Charlie Brown with my kids the other day and Sally had quote that seems fitting, “I’ve been robbed…YOU OWE ME RESTITUTION.”
Charlie Brown is always a good resource. May your early treatment mean avoiding much difficulty. Here’s to that. Cheers.
1.How many other diagnoses (co-morbidities) do you have?
I have secondary OA of the hips, and I believe possibly my right knee,but the knees not been confirmed as yet.
2.When were you diagnosed?
While pregnant with my son (middle child),in June 1992 aged 23.
3.How many Rheumatoid Arthritis treatments have you tried?
Two so far, sulphasalize and then mtx which thankfully works for me.
4. What kind of a reward do you give yourself after taking any medicine that you hate?
I like to have a bag of boiled sweets to hand after my mtx jab, they seem to help ease the nausea.
5.Who helps you open doors or jars when you need it?
My husband and my kids when they are with me. Sometimes strangers will hold a door, that’s always nice and much appreciated.
6. What would your ultimate good rheum doc do?
Ask me how I’m really feeling inside, if I think we’re doing all we can and keep me informed when new options arise. Above all listen!
7. What’s your favorite comfort for RA?
Pyjamas!!! A cosy sofa and my laptop with all my friends in it, especially my RA support group who are like a family to me.
8. What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
Learning to let go of the things I love and can no longer do, having to give up my lovely job just over a year ago was so hard. And trying to get people to understand.
9. What’s your biggest RA-related fear?
That one of my children will get it.
10. How many pills do you swallow every day?
About 11 a day, sometimes I can keep the pks down and its 9 a day.
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
This doesn’t apply to me being in the UK, but does to many of my group members, so for them I’d wish for less stress with the insurance process for them, that they never have to worry about things being covered or not covered.
12. What do you wish people knew about Rheumatoid Arthritis?
How it changes your whole life & that of your family, that it takes away so much and isn’t just the joint pain.
13. What would you like to say to your RA?
I’d like to say ‘I hate you for what you’ve taken from me and my loved ones, but I’d also like to say thank you for the wonderful friends I have in my life, that I’d never have met if it hadn’t been for RA.’
Thanks, Gilly. Number 8 is a kicker. 🙁
Another great idea Kelly!
1. How many other diagnoses? None that I know of yet altho do have some OA in my left knee and ankle, both from injuries that get fired up worse now.
2. When diagnosed? On my birthday last October! Yep, happy birthday to me :razzmad:
3. How many treatments? Other than MTX and folic acid, on my second biologic.
4. Reward for taking my meds? M & M’s!
5. Who helps open doors and jars? I have some devices that help but when I can’t who ever is around gets called. I have a wonderful friend who always opens doors for me when we are together.
6. Ultimate dr? Mine is pretty good so far, he asks about the pain and only looks at the lab work after we talk…
7. Favorite comfort for RA? Other than M & M”S?? Heating pad, a long nap, petting my horses.
8. Hardest thing I have done since diagnosed? For me one of the hardest was coming to a realistic understanding I will never be able to ride Dressage like I used to. I loved the challenge of it both physically and mentally. I had to realize I will have to be content just to get on and do easy stuff, which hasn’ happened yet….I am praying that day will come soon with the help of the latest biologic :rainbow:
9. Biggest fear? Joint damage, heart problems and not finding relief from the constant PAIN!
10. How many pills? Usually just a few but I too need to take more vits, just can’t bring myself to take more stuff!
11. Insurance wish? That they wouldn’t take so long fiddling around with paperwork to approve meds, they would cover the cost of accupunture and massage therapies.
12. What I wish others knew? That is is an auto-immune disease that attacks our own bodies in every joint and every organ and the pain is severe and UNLIKE any other pain! We are NOT lazy, we HURT!!!!
13. What would I like to say to RA? Well, you can’t print that here, but I would like to thank it for ruining my life, stressing out my husband and family and making me feel like CRAP all the time. I HATE YOU RA…ARRRRRRR-RA! :pain: :reallyangry: :no: :razzmad:
Thanks, Nancy.
1. How many other diagnoses (co-morbidities) do you have?
I had carpal tunnel which I would take back in place of RA
2. When were you diagnosed?
2004
3. How many Rheumatoid Arthritis treatments have you tried?
just methotrexate
4. What kind of a reward do you give yourself after taking any medicine that you hate?
reward myself for ingesting poison for the rest of my life…just doesn’t seem right.
5. Who helps you open doors or jars when you need it? my husband and a strap wrench.
6. What would your ultimate good rheum doc do?
make it go away
7. What’s your favorite comfort for RA?
ditto on the lazy boy – used to have a hot tub. it was great when I was in there, but showering and changing afterwaesa undid all the good.
8. What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
flipped a house.
9. What’s your biggest RA-related fear?
first and foremost that my children will get it – then being totally immobile.
10. How many pills do you swallow every day?
14 – not including the days I take methotrexate.
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
amen to the airline upgrades, then maybe base their rates on the severity of the disease.
12. What do you wish people knew about Rheumatoid Arthritis?
that it is NOT arthritis, glucosamine won’t help, today I can walk a mile but tomorrow I can’t, that every RA sufferer suffers differently.
13. What would you like to say to your RA? having RA is like carrying around a bag of rocks. I hate what you have done to my life and the lives of all RA Warriors.
Hi Lora,
I like your version of #12 a lot. Number 6 sounds like a superman of a doc – every patient on earth would stand in line to see. 😉
#6 makes me sad. I have your “dream rheumy”. I adore him so much. He actually spends almost too much time with patients so he is always 3 hours behind, even at the start of the day. Last time he spent over an hour with me, not just talking about my RA but also my family and life in general. He treats my symptoms, not my labs. He said, “You must always treat the clinical presentation of RA. Labs don’t always give the full story. You must treat the patient first.” He’s said that to me and also to residents in my presence. I wish everyone had my rheumy. Thankfully he is a professor with the medical school here so maybe more like him will be available in the future.
Fantastic quotes Steph. I plan on telling docs I meet to read that!
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awesome. Thanks Dawn.
1.How many other diagnoses (co-morbidities) do you have?
2, RA and Sjogrens
2.When were you diagnosed?
2000, after a year of guessing and trying so many drugs.
3.How many Rheumatoid Arthritis treatments have you tried?
7 and counting….
4.What kind of a reward do you give yourself after taking any medicine that you hate?
Funny, I have never thought to reward myself….something to think about for sure.
5.Who helps you open doors or jars when you need it?
When hubby and daughter are not home, I use to grippers, one for the jar to sit on and one for the top. I usually hurt my deformed hand, but…I keep trying.
6.What would your ultimate good rheum doc do?
Educate me on my illness.
7.What’s your favorite comfort for RA?
Signing onto rawarrior and seeing that I am not alone. As selfish as this sounds, an fellow RA’er know its not selfish at all.
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Learning alternate ways to maintain indendenpence.And, learning to say no to people, which I have a difficult time doing.
9.What’s your biggest RA-related fear?
That one of my children will get it.
10.How many pills do you swallow every day?
Depends on the day really. What bother’s me more is not being able to take pain meds for fear I may have to drive to go pick up my daughter. As, I do not drive while on my pain meds, therefore, many times, I have to suffer it out.
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Warm water pool therapy, and self help classes.
12.What do you wish people knew about Rheumatoid Arthritis?
That it is not easily treated like the television commercials portray. Also, that it is NOT arthritis, rather an Auto Immune Disorder taht affects all aspcts of our day to day living. It takes more than 2 Alieve to treat my all day pain!
13.What would you like to say to your RA? RA, you may try to define me, however, I am an RA Warrior, and I will not allow you to do so!
Cindy, Please, please don’t do that to your hands and wrists–look into an electric jar opener that opens all kinds and sizes–it’s so worth the money–mine was a gift, but you can find them at EBay or Bed, Bath and Beyond for $12.99, Black and Decker “Lids Off.”
Lyn, Thank you for the tip. I will definately have to check into getting one of the opener’s.
I have enjoyed reading all of these so far!
I did mine on my blog: http://strebekah.blogspot.com/2010/10/ra-meme.html
How many other diagnoses (co-morbidities) do you have?
Let’s see, there’s the chronic migraines, the fibro, the endo, the asthma, the depression…how many is that?
When were you diagnosed?
This past July, after the birth of my second son.
How many Rheumatoid Arthritis treatments have you tried?
Just prednisone. But I am going to a new doc next month.
What kind of a reward do you give yourself after taking any medicine that you hate?
No experience there yet.
Who helps you open doors or jars when you need it?
Hubby. He’s my jar opener extraordinnaire.
What would your ultimate good rheum doc do?
Listen to me when I say, “That IS swollen (you a**hole).”
What’s your favorite comfort for RA?
Hot stone massage.
What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
Finding a good doctor.
What’s your biggest RA-related fear?
The wheelchair. (My kids are adopted and I take solice in thinking that spares them this disease)
How many pills do you swallow every day? 1 million. Seriously, with the vitamins, it has to be +20
Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
The COMPLETE cost of all these stupid joint braces.
What do you wish people knew about Rheumatoid Arthritis?
That it isn’t osteoarthritis. That it hurts even if I look fine. That I keep my hair this way b/c it hurts to much to fix it in other hairstyles.
What would you like to say to your RA? You killed my father, prepare to die. (Princess Bride Joke. I couldn’t help it.)
Fantastic answers, Amy.
1.How many other diagnoses (co-morbidities) do you have?
Eight – Alcohol related Fatty Liver, Enlarged Spleen, Degenerative Disc Disease, Type 2 Diabetes, Depression, Osteoarthritis, Osteoporosis and Hypertension – that I can think of and know about!
2.When were you diagnosed?
April 2009
3.How many Rheumatoid Arthritis treatments have you tried?
Four – NSAIDs, Prednisone, Sulphasalazine and Arava
4.What kind of a reward do you give yourself after taking any medicine that you hate?
Time out to rest.
5.Who helps you open doors or jars when you need it?
My wonderful housemate and best friend
6.What would your ultimate good rheum doc do?
Doc would involve me in all aspects of my treatment, listen to me and genuinely hear what I am saying. Would look into my real concerns, know that I understate my pain and would be accessible for me to contact when I have a serious concern.
7.What’s your favorite comfort for RA?
Hot packs, at times cold packs for my back, a warm bath (if I can get in and/or out) and cuddling up with my Rottweiler(though huge he knows when I’m not well and is so gentle and snuggly with me) – like my own live heat pack.
8.What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
Finally admitting that I could no longer work and I definitely agree with finding a good Rheummy – I have a new referral and see him in Nov (fingers crossed – or is that my RA progression??) Getting up from bed some days.
9.What’s your biggest RA-related fear?
A premature and painful death. Being alone, alive and in pain and not being able to help myself.
10.How many pills do you swallow every day?
Currently 32 without additional painkillers – this includes vitamins, Vit D, Fish Oil etc
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Home spa baths – I had one in my previous home (before RA diagnosis but had to leave it there when I sold the house and moved). Free medication – in Australia we are so much more lucky than you guys in the US re insurance etc but it takes a large chunk out of what money you do have.
12.What do you wish people knew about Rheumatoid Arthritis?
How painful it is. How restrictive this disease is and how planning in advance is so hard. Also, when I say I can’t – I really do mean it!!
13.What would you like to say to your RA? I despise what you do to people and the fact that you often hide your true wickedness making it so much harder to deal with and for others to understand.
Good luck with the new doc, Kathryn!!
Thanks Kelly – I will definitely let you all know. I am more than hopeful, particularly as my new chap was recommended by one of your warriors. 😀
1.How many other diagnoses (co-morbidities) do you have?
4, in addition to RA
2.When were you diagnosed?
Finally, in 2005 after several years of symptoms
3.How many Rheumatoid Arthritis treatments have you tried?
Can’t even remember….5 or 6
4.What kind of a reward do you give yourself after taking any medicine that you hate?
Sleep, if I can.
5.Who helps you open doors or jars when you need it?
My sons.
6.What would your ultimate good rheum doc do?
Ask questions and really listen!!! Also, and most important, treat the pain!
7.What’s your favorite comfort for RA?
Hot bath.
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Finally admitting I could no longer work, and leaving my job.
9.What’s your biggest RA-related fear?
That one of my boys will get it.
10.How many pills do you swallow every day?
Too many!
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Quality specialized mattress.
12.What do you wish people knew about Rheumatoid Arthritis?
How truly painful and frustrating it is to have uncontrolled RA or RA damage. That RA is not “arthritis.”
13.What would you like to say to your RA?
Get the hell out of here, you were not invited!!!
Yes! to number 13. I’m amazed some trends are starting to pop up.
1.How many other diagnoses (co-morbidities) do you have?
Hypotyroidism
2.When were you diagnosed?
August 2007
3.How many Rheumatoid Arthritis treatments have you tried?
Three, but I am now on none because I lost my insurance.
4.What kind of a reward do you give yourself after taking any medicine that you hate?
Nothing
5.Who helps you open doors or jars when you need it?
Sometimes my ex-husband or daughter. I tend to hide my pain from people.
6.What would your ultimate good rheum doc do?
See me. I lost my job, therefore lost my insurance so I have been searching for a year to get help, but keep getting denied.
7.What’s your favorite comfort for RA?
Warmth, sleep when I can get it.
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Excepting it.
9.What’s your biggest RA-related fear?
That RA will take my life before I can find the help I so desperatly need.
10.How many pills do you swallow every day?
one for my thyroid
for the RA, I take 8 (1600 mg) ibprophen during the day and 2 (400mg) motrin PM at night.
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Hot tub, Heating bed that is similar to a tanning bed only the rays are not bad for you. I wouldn’t want a message because my skin hurts to be touched.
12.What do you wish people knew about Rheumatoid Arthritis?
How extremel painful and exhausting it is.
13.What would you like to say to your RA?
I hate you for taking my life away; my job, my insurance, my marriage, my mobility, my strength, my independance, my happiness. I hate you, I hate you, I HATE YOU!!!!!!!!!!!!
“tend to hide pain” I hear all the time. Susan, are you applying to get support somehow? Not that I think it’s easy. My heart goes out to you. I’ve been in that situation.
I have been trying for a year to get help with no success. I keep running into brick walls. This state of Oregon I live in is messed up.
Susan, I need to write up a post on this – so manyof us go thru it. Have you tried a university hospital with a sliding fee scale? I’ve found them a life saver literally at times. Also, the RA drug co will pay for meds if u have no way for many patients but you have to pay a dr still to get a script. There is an article by Lisa Emrich on my Bulletin Board that tells her experience & where she found help. Maybe there is a resource there that would help you too. :heart: I know it’s hard.
Kelly, thank you for the reference to the article, I will read it. I have tried sliding scale places, but I have no job, there for no money. I would be homeless right know, but my ex-husband is letting my daughter and I stay until I can get the help I need. I found a clinic that is helping me with my tyroid, but they will not help with my RA. Just get brick walls, but I will keep searching.
Susan I live in Portland Oregon…I know the Oregon health plan is a lottery system..unless you get pregnat..lol….but Have you tried OHSU?
HOPEFUL
Kim
Hi Kim,
I tried Providence and was denied. I was going to try OHSU but I was told if Providence turned me down that OHSU would turn me down too.
Thank you Kim 🙂
Susan
Hi Susan,
I live in Portland, too. My son qualified for OHSU sliding scale. It really is worth a try, even if you were denied at Providence. Please apply.
Noelle
Noelle, thank you 🙂 I will try.
Susan, I got help when I went to “helppayra.com”
http://www.helppayra.com/
it’s a website with different options listed, and each option is sort of independent of the other…I got help from HealthWell.org
Thank you Michael, I will check it out:)
1. I have two other autoimmune disorders besides RA.
2. Finally diagnosed in March 2004 (after a bad 2003), but looking back, I know I had it much longer, and had some symptoms back in the mid-80’s and mid-90’s.
3. Plaquenil, Arava, Methotrexate(tablets), Remicade (quit working after two years), Enbrel, Orencia, Cimzia. Currently taking MTX injections and back to Enbrel because it helps me more than Cimzia or Orencia, which did nothing.
4. I don’t reward myself! What a dummy…. 🙂
5. My husband. I have no children, and my dog is no help (except she cuddles wonderfully!)
6. My “ultimate good Rheum doc”? He/she would CURE me. (yeah…I’m dreaming.) Seriously though, he/she should ask, and most importantly…listen. And not rush. And treat me as the intelligent person that I am. I am fortunate to currently have a great doctor, but I have seen one who was the antithesis and he was horrible. When I asked questions, he told me “you read too much”. I was livid!! My current doc likes that I am so well-informed. It probably makes his job easier, too.
7. Cuddling up with my doggie and my “blankie”. LOL When I was a young child I dragged a “blankie” around everywhere. When I experienced a “hyper-acute” onset of RA in late 2003 and was bedridden with horrible pain, I reached for a new “blankie” and cuddled it against my face again and cried. It now has holes in it but I don’t care because it does comfort me. There, I’m “OUT”. LOL! I can’t sleep without it and I take it with me when I travel. LOL My husband laughs (and so do I) but anyone who is critical can kiss my patootie! 😉
8. Wow. There are SO many things I can think of (things are hard to do on a daily basis). One of the first things that comes to mind is the first time I ever took MTX. I had done all of the research and knew the risks. I sat there, staring at the pills (so many!) and cried for a very long time. I knew that I was probably starting down a very long, bumpy road of no return, and time has proven how right I was. (And I still cry a LOT.) Nowadays I am injecting MTX and Enbrel (I’ve come a long way) but I know that they’re keeping me walking, so I gladly take my medicine. But I am still so afraid of the possibilities that lie ahead…
9. My biggest fear is probably that I will drop dead due to a heart attack one day soon or that I will get cancer because of our increased risk. I also worry that my liver will quit working because of the MTX or that all of a sudden NONE of the meds will help me at all, and I will go back to being bedridden and in horrible, horrible pain. I was in such a state last year, and it was something I don’t want to ever experience again.
10. It varies by the day, but at least two, plus many vitamins (which I always choke on because they are so big). I have a very hard time swallowing pills…is that because of my RA?
11. a good mattress.
12. That this isn’t “old people’s” arthritis. And that it can affect more than joints, and that it is an autoimmune disease similar to Lupus. And how painful and disabling it is, and how it affects every aspect of our lives.
13. I hate you. Go away and never come back (and don’t bother anyone else, either). And tell us what your “Achilles Heel” is so that researchers can figure out how to destroy you forever.
Great idea about the Achilles heel!
1. Numerous, my favorite was “Lack of excercise”…..
2. I think it was 2006, I cant remember anymore, I blame it on all the anaesthesia.
3. I think I am on number 4.
4. I a nice B.L.T.
5. My wife, God Bless her she is a true warrior.
6. I have one. Dr Mirza is the Best…
7. A nice hot shower, plus, please dont get mad, but a nice pint of Guinness always makes me feel better..
8. Telling my kids I cant play w/ them because I am hurting.
9. Well now that its in my Heart, I am not going to say it but I am sure you can guess.
10. Not that many, hard to imagine…
11. I wish that they would cover more Prescriptions, amazing how much this stuff costs….
12. How much it changes you. I hate hearing “Wow you dont look sick” or ” I have Arthritis also” drives me crazy.
13. I hate you!!!!!!!!!!!
LOL. I’m not mad. I do like beer too. LOL, Tom.
Kelly – I love this idea. will have to get the hang of it, though.
1. 6ish.
2. spring of 1997
3. don’t remember
4. extra xanax
5. nobody. I live alone.
6. fortunately, she’s already doing ultimately, in my opinion. one word explains…..compassion.
7. the spa with all the jets I keep in my attached garage.
8. accepting the fact that I was no longer the dependable person that people knew.
9. sudden heart attack.
10. 13-16
11. biologics being paid for in full.
12. that we are in constant pain even though we can keep it hidden at times, and, if you know someone with a disease, please take 10 minutes of your time and do a quick search online and educate yourself…maybe your expectations of that person may become more realistic.
13. thank you RA, for making me a softer person that slowed down and started enjoying the moments of my life. I don’t believe I would have made my dreams come true it it weren’t for you. I inherited you from my lovely grandpa and I will wear you with as much grace as possible, just like he did.
Jana your no 13 made me cry, that’s a beautiful thing to say. I also totally agree with the comment about slowing down. I look on that part as a gift, time to see things I’d otherwise miss & time to listen to others who need support. :heart:
1.How many other diagnoses do you have?
4 in addition to the RA.
2.When were you diagnosed?
I was diagnosed after 53 doctor visits in 2009 with RA!
3.How many Rheumatoid Arthritis treatments have you tried?
Several. I am allergic to the standard drugs-methotrexate, piroxicam, Plaquenil etc, and prednisone does nothing for me. I am on my third biological now.
4.What kind of a reward do you give yourself after taking any medicine that you hate? Chocolates! Some nice truffles or toffee.
5.Who helps you open doors or jars when you need it?
My husband or daughter. I hate that I have lost this ability. I used to be the one that did this for everyone.
6.What would your ultimate good rheum doc do?
I have a great doc! He listens and takes time with me. He addresses my pain issues, which is a big deal for me.
7.What’s your favorite comfort for RA?
My bed and my blankets. I love to snuggle up under the blanket on my bed with warm fuzzy socks and soft pillows. Oh it’s heaven. I also love ice packs!
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Applying for SSDI. Understanding that as it is now, there is now way I could return to working enough to support myself. It was a very difficult decision to make. It made me felt ashamed, and it shouldn’t as this is not my fault.
9.What’s your biggest RA-related fear?
That my daughter will end up this stinkin no good disease.
10.How many pills do you swallow every day?
I am down to 12 now. 🙂
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Insurance reimbursement for hot-tubs, massages, mattresses and health clubs.
12.What do you wish people knew about Rheumatoid Arthritis?
How painful, exhausting and how difficult it is, day in and day out, living with RA. That the commercials are TV are a joke. Why doesn’t someone really portray what it is like to have RA?
13.What would you like to say to your RA?
You might have my body, but that doesn’t mean you have my spirit or my soul. Those belong to me, and you CANNOT have them. I fight everyday because I am brave, I am strong and I will go on, in spite of the pain, in spite of my body. This is me sticking my tongue out at you RA! :)~
53 visits! That must be a record!
Rebecca says: “Kelly over at RA Warrior decided it would be nice if us RA’ers had a meme of our own. I hesitate to participate because so many of the RA’ers I know have it much worse than I. Some need days..”
1.How many other diagnoses (co-morbidities) do you have?
Hashimoto’s and Sjogrens
2.When were you diagnosed?
1993
3.How many Rheumatoid Arthritis treatments have you tried?
Too many to list.
4.What kind of a reward do you give yourself after taking any medicine that you hate?
After Remicade I get Thai food to take home for lunch.
5.Who helps you open doors or jars when you need it?
My husband.
6.What would your ultimate good rheum doc do?
Excellent medically and caring – fortunately that describes my doctor.
7.What’s your favorite comfort for RA?
Hot bath.
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Not overdoing it.
9.What’s your biggest RA-related fear?
That one of my children will get it.
10.How many pills do you swallow every day?
12 pills plus fosamax once a week, MTX injection once a week and Remicade infusion every 4 weeks.
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Nothing – my insurance is great.
12.What do you wish people knew about Rheumatoid Arthritis?
That it’s not OA. That it’s extremely painful even if I look ok.
13.What would you like to say to your RA?
Go away.
Good point on number 8. Thanks, Carol.
1.How many other diagnoses do you have?
reynauds and just recently a spontaneous rupture of my achilles tendon
2.When were you diagnosed?
STILL not officially diagnosed (and i’ve been seening/treated by various rheumatologists for 15 years!) after years of symptoms and finding some relief with nsaids and dmards… the docs still claim i have only a ‘tentative diagnosis of RA’
3.How many Rheumatoid Arthritis treatments have you tried?
i’ve lost track of how many i’ve tried… i remember being so sad when they took bextra off the market since it was one drug that actually provided me some relief! i’ve tried: daypro, relafen, vioxx, celebrex, sulfasalazine, bextra… the list just goes on and on…
4.What kind of a reward do you give yourself after taking any medicine that you hate?
thank goodness for the feel good properties of a good quality chocolate bar!!
5.Who helps you open doors or jars when you need it?
whoever is around, though i hate having to ask for help. the jar opener gadgets are a definite help, especially when you live by yourself. you get to know your neighbors well and occasionally ask them for help, other times, i just sigh and look around for something else that would work that isn’t in a jar!
6.What would your ultimate good rheum doc do?
listen and truly understand that the pain i experience is real and truly as bad as i tell you it is. even though i can talk about it with a smile on my face, it still hurts! a lot!
7.What’s your favorite comfort for RA?
i so love my memory foam mattress!!! also, when the joints become unbearably achy, i love to plug in an electric blanket and wrap myself up in it (my dog and cats also love it when i do this and their happy cuddling can help too)
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
when i was in the middle of a big flare, i had to admit to myself that i needed to take a medical leave of absence from school. i had been trying so hard to be just be ‘a normal college student’ but my ra wouldn’t let me at that point.
9.What’s your biggest RA-related fear?
that i won’t be able to find a way to safely deal with my back and joint pain and be able to have a baby at the same time…
also, i hated having to need a handicapped permit. i hope i don’t need one again for a long time
and last but not least, the pics of the ‘typical RA hands’ in textbooks give me nightmares
10.How many pills do you swallow every day?
WAY too many! (though i do take many supplements as well)
it’s kind of sad when the super jumbo size daily pill containers are unable to hold all the pills you take – even when you split them up into am and pm doses!
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
acupuncture! i had so much success with an acupuncturist down in San Diego! massage too! i have knots in my shoulders that just never go away (both the docs and the massage people feel this is my body’s response to chronic pain)
12.What do you wish people knew about Rheumatoid Arthritis?
that it affects us every day. that i hate complaining but it can really suck sometimes! and yes, i hurt every day, all the time!
13.What would you like to say to your RA?
you’ve had your fun, but i’m sooo over you… you can leave now!
1.How many other diagnoses (co-morbidities) do you have?
Two so far
2.When were you diagnosed?
March 2010, but pretty sure I’ve had it for quite awhile.
3.How many Rheumatoid Arthritis treatments have you tried?
Plaquenil, MTX, Folic Acid, but they are looking at putting me on Biologics as the pain is back.
4.What kind of a reward do you give yourself after taking any medicine that you hate?
I never thought about rewarding myself, but I’m going to start 🙂
5.Who helps you open doors or jars when you need it?
My son when he is around and able, otherwise a good slam on the counter works for jars.
6.What would your ultimate good rheum doc do?
My Rheumy Doctor is really good I think. I mean I see her every 3 months and she seems to listen.
7.What’s your favorite comfort for RA?
A hot bath.
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Accepting it and trying to come to the realization that I can’t play with my son like I used to. It’s heartbreaking hearing him say ‘you are always in pain, you never want to play with me anymore’. What to you say to that 🙁
9.What’s your biggest RA-related fear?
That this disease will kill me and it will be a slow and painful death. Never being able to play with my son again.
10.How many pills do you swallow every day?
4 as of right now so I am not complaining at all on that.
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Specialized beds for people with RA, spa treatments (well just because)
12.What do you wish people knew about Rheumatoid Arthritis?
That we may look fine on the outside but the battle on the inside is pure hell and that just because we may moan every time we stand or sit or move, does not make us hypochondriacs.
13.What would you like to say to your RA?
I didn’t ask for you and I didn’t want you, but since I have you, work with me and I’ll work with you. PS, I hate you!!
Hi Liz! I had to got through the spam folder when I realized that a couple of the memes were “lost” in there. Thanks so much for yours. Sorry it’s posted late. Bless your heart with your son. I have a 5 year old so I understand.
1. How many other diagnoses (co-morbidities) do you have?
5
2. When were you diagnosed?
Four years ago.
3. How many Rheumatoid Arthritis treatments have you tried?
Four
4. What kind of a reward do you give yourself after taking any medicine that you hate?
A glass of wine (I know, I know….)
5. Who helps you open doors or jars when you need it?
My ever-helpful husband.
6. What would your ultimate good rheum doc do?
Just what mine does… always more concerned about the symptoms than the test results.
7. What’s your favorite comfort for RA?
A body pillow.
8. What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Exercising..regularly.
9. What’s your biggest RA-related fear?
That it will force me to quit work before I am ready.
10. How many pills do you swallow every day?
20
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Ah yes — how about foot massages?
12. What do you wish people knew about Rheumatoid Arthritis?
That RA is much more serious than osteo arthritis, that it shortens life spans and is incurable.
13. What would you like to say to your RA?
You will not win.
1.How many other diagnoses do you have?
None
2.When were you diagnosed?
At age 25…I’m now 34.
3.How many Rheumatoid Arthritis treatments have you tried?
Started on Plaquenel, moved to Metheltrexate, Prednizone and now Enbrel.
4.What kind of a reward do you give yourself after taking any medicine that you hate?
No rewards really, but after a visit to my RA doc, I go get a latte.
5.Who helps you open doors or jars when you need it?
My husband or my 3 year old daughter.
6.What would your ultimate good rheum doc do?
Truly listen to me and be willing to work with me as I see a natropath and explore other alternative methods.
7.What’s your favorite comfort for RA?
Long, hot baths and Bikram Yoga
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Admit that I can’t do it all….I quit my part time job last year so I can be home and be a mom to my two kids. It was too hard for me to keep up with everything…I also have a hard time not being able to exercise like I used to.
9.What’s your biggest RA-related fear?
I want to be around and be healthy for my kids. I want to be able to play with them and kick soccer balls. I fear not being able to be the active mom I want to be.
10.How many pills do you swallow every day?
5 prednizone pills and A LOT of vitamins–13 I think?
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Yoga!
12.What do you wish people knew about Rheumatoid Arthritis?
It’s a disease that affects me daily–there is pain as well as fatigue.
13.What would you like to say to your RA?
As much as I hate RA, I have to admit that it has made me a stronger person. Maybe not stronger physically, but rather emotionally and spiritually. I’ve grown so much in my faith in God that I don’t think I would have without RA… It has caused me to make choices to be happy and content in spite of pain.
Thanks, Betsy. I agree about becoming stronger spiritually.
It sure also would be good if insurance would cover whatever kind of physical therapy a patient can tolerate (yoga, etc) since it would help maintain strength. Yep.
Thanks for the invitation. I will be having a cup of hot green tea-not because it is my favorite(it isn’t) but because it is good for your liver and my liver numbers get elevated from methotrexate and I really want to take it. I have been noticing other Kays so I will be Wyoming Kay-bet no other Kay is from Wyoming.
1. I also have osteoporosis, vitamin d deficiency, osteoarthritis-I think this is all from the RA
2. I was diagnosed in September 2009 after 12 years of occasional symptoms.
3. I have tried many different NSAIDS until I started getting an ulcer from Aleve. Vioxx was a great help at times and now methotrexate is helping me lots.
4.Milkshakes are a great treat and actually help my stomach after methotrexate pills.
5. My husband is very supportive and I thank God for him every day.
6. Another RA patient told me that the Dr. who diagnosed her cried when he told her. Tears aren’t necessary but an “I’m sorry” would be nice. Otherwise I really appreciate my rheumatologist. He was brave enough to diagnose and treat me even being seronegative.
7. I love hot baths and my husband rubbing my ankles.
8. It was hard to be brave enough to take a chemo drug and to try to be my old energetic self for my grandbabies.
9. I really fear being a burden.
10. I usually take between 2 to 7 pills a day.
11. I wish insurance would buy me a big spa tub and supply a housekeeper to clean it for me.
12. I wish people knew that it is incurable and not just “arthritis”.
13. RA, I resent the changes you have brought me. Thanks for letting methotrexate attempt to tame you and please don’t stop allowing it.
Thanks, Kay. I had green tea with white tea and raspberry garden today. Mmm. my favorite one right now.
1. How many other diagnoses (co-morbidities) do you have? we’re still working on that
2. When were you diagnosed? summer 2009 after 8 yrs of symptoms
3. How many Rheumatoid Arthritis treatments have you tried? just one so far
4. What kind of a reward do you give yourself after taking any medicine that you hate? ice cream, mint chocolate chip
5. Who helps you open doors or jars when you need it? my boys…though it took my oldest a few tries to remember not to let the door slam in my face
6. What would your ultimate good rheum doc do? be friendly and listen
7. What’s your favorite comfort for RA? a tiny pillow decorated for thanksgiving that i now use all year round, fits perfect in the small of my back
8. What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis? realizing i can’t do everything myself anymore and having to ask for help
9. What’s your biggest RA-related fear? not being able to work
10. How many pills do you swallow every day? 9-12
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients? a genie in a bottle
12. What do you wish people knew about Rheumatoid Arthritis? that it doesn’t compare to osteoarthritis
13. What would you like to say to your RA? you are mean for no reason and i don’t like you
A genie! 😀
wonderful answers, Erin!
1. How many other diagnoses (co-morbidities) do you have? Not sure still too new to RA
2. When were you diagnosed?
August 2010 after 10 years of symptoms
3. How many Rheumatoid Arthritis treatments have you tried? One so far
4. What kind of a reward do you give yourself after taking any medicine that you hate?
I do not usually reward myself for something like that.
5. Who helps you open doors or jars when you need it?
My husband and sons. But they really do not understand the pain part.
6. What would your ultimate good rheum doc do?
Be understanding, be patient, be a good listener,be nice.
7. What’s your favorite comfort for RA?
Blankets and a hot bath
8. What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Coming to terms that I have it.
9. What’s your biggest RA-related fear?
Not being able to live a fulfilled life.
10. How many pills do you swallow every day?
6
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Group support classes
12. What do you wish people knew about Rheumatoid Arthritis?
That is not like regular arthritis. I hate hearing “oh, I have arthritis too.” my response. ” its not the same.”
13. What would you like to say to your RA?
Please do not infect my children
Hi Deb.
Number11: That is an interesting idea I didn’t think of – I assumed classes would be free, but that makes no sense since nurses or educated people would have to lead them – insurance could let a doc bill for that. Were you trying to be diagnosed during the 10 years or trying to ignore symptoms? I think I did both.
Actually I was being treated for Lyme disease for the last ten years, until a new doctor said this might be something different. I was bitten by a deer tick, and was having the classic Lyme symptoms. I was given antibotics and the symptoms seemed to subside a little, then they would always come back. This went on for ten years. A new doctor in the practice was smart enough to run a Rheumatiod test that was never done. My SED rate was elevated as was the Antinucleur Antibody and the RF factor. So I missed out on ten years of treatment.
I am sorry, Deb. I think that happens a lot. Who knows whether it would have been different being diagnosed early. Hopefully with awareness it can happen for others.
I agree totally Kelly! I actually have an appointment with a Lyme Specialist on Monday. To totally rule it out for my well being. Then my un-denial can begin!
1. How many other diagnoses (co-morbidities) do you have?
just 1 official additional diagnosis
2. When were you diagnosed?
1997
3. How many Rheumatoid Arthritis treatments have you tried?
6 different meds altogether, but some are considered one treatment as they are given in combination
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 teenage son or husband. I also have a Black & Decker electric jar opener – you need one!
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. (I’ll ditto your answer!)
7. What’s your favorite comfort for RA?
Hot bath or my son on my lap. Happiness is a warm puppy. (Those are nice! I’ll also add a good nap!)
8. What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Finding a good doctor. Coming to terms with what this disease actually is and accepting the longterm prognosis.
9. What’s your biggest RA-related fear?
That one of my children will get it. (I ditto that too!)
10. How many pills do you swallow every day?
It varies, but most are vitamins. My primary med is Enbrel (injection).
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
a jucuzzi hot tub!
12. What do you wish people knew about Rheumatoid Arthritis?
That RA is not “arthritis.” What it actually is and what it actually does to the body for the rest of our lives.
13. What would you like to say to your RA? Disappear from the face of the earth! You should not be here; you should be reserved for the torments of hell.
Hi Jodi! 😀
Number 13: I wanted to mention hell also. Thanks.
Heres just the answers..
! 1 just RA
2 Oct 2009
3 6
4 Chocolate, popcorn, Ice Cream
5 Husband Son and Family
6 I would like more time, hes very good, and always fits people in during the day, when they need to see him
7 Hot water bottle, good book, BED
8 trying to hide my pain from Family and friends
9 Slow painfull death
10 up to 12
11 most out of poket expenses
12 that its NOT ARTHRITIS
13 Make it stop with me, leave my children alone !!!
Amen Margaret.
1.How many other diagnoses (co-morbidities) do you have?
2…osteo and thyroid cysts
.
2.When were you diagnosed?
March 2010
3.How many Rheumatoid Arthritis treatments have you tried?
1 so far
4.What kind of a reward do you give yourself after taking any medicine that you hate?
Sleep lol after the MTX
5.Who helps you open doors or jars when you need it?
My wonderful frustrated patient husband. When I asked a friend while away at a business meeting she was shocked that could not do smething so simple.
6.What would your ultimate good rheum doc do?
Be more available for information between visits and treat more aggressively rather than the way the insurance companies decide
7.What’s your favorite comfort for RA?
my dogs as hot water bottles and floating in warm water
.
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Having to do so much less and deal with the physchological implications of this disease
.
9.What’s your biggest RA-related fear?
That I won’t be able to ride my horses and mid flare that it won’t ever ease up
10.How many pills do you swallow every day?
8 or 12 on MTX days
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Quality mattress since solid rest is the best prescription for RA ! (Love this) and really good shoes
12.What do you wish people knew about Rheumatoid Arthritis?
How much it hurts!
13.What would you like to say to your RA? Go the heck away!
thanks Molly. Shoes can be a real problem yep.
How many other diagnoses (co-morbidities) do you have?
Just two more, but we’re working on a third. I hate the “we don’t know stage”
When were you diagnosed?
March of this year, I’ve had difficulties off and on since I was a teenager.
How many Rheumatoid Arthritis treatments have you tried?
Only one so far, but its still early. I just had to stop the methotrex. so now I’m waiting on other stuff to clear up before I can start something else.
What kind of a reward do you give yourself after taking any medicine that you hate?
Green tea coconut bread from this Korean bakery near my sisters house. If its a really bad week, I go for a Snickers.
Who helps you open doors or jars when you need it?
I have 3 or so “cheaters” in various kitchen drawers. Of course my family always pitches in.
What would your ultimate good rheum doc do?
Take a few minutes to find out how my life is outside of my diseases. How I manage day to day.
What’s your favorite comfort for RA?
I have a huge white fleece blanket I pull out on my bad days. My children, husband, dog and cat love to come snuggle with me under it. Its big enough for all seven of us.
What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
Asking for help.
What’s your biggest RA-related fear?
That I’ll never have enough energy to really exercise to get my weight down.
How many pills do you swallow every day?
10-15 depending on the day
Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Thai Massage, Yoga and a personal assistant to remember all the crap I always forget.
What do you wish people knew about Rheumatoid Arthritis?
That it effects the whole body, nearly every system, directly or indirectly in one way or another.
What would you like to say to your RA?
I’m not sure yet, I’m still to angry at it to speak to it.
Sorry about one more diagnosis, Jill. I love your last answer.
1. How many other diagnoses (co-morbidities) do you have?
Just RA. It’s more than enough, plus EVERYTHING that goes wrong gets shoved under the RA umbrella.
2. When were you diagnosed?
Three years ago, after years of decline and pain.
3. How many Rheumatoid Arthritis treatments have you tried?
Prednisone and methotrexate
4. What kind of a reward do you give yourself after taking any medicine that you hate?
A day of rest on metho days. Chocolate!
5. Who helps you open doors or jars when you need it?
My husband, bless his heart.
6. What would your ultimate good rheum doc do?
I don’t have a rheumy; I have a country doctor, a general practitioner. He diagnosed me when the bigshot specialists shook their heads and inferred that I was a whacko or something.
7. What’s your favorite comfort for RA?
Hot bubble bath. Gentle back rub. A comforting hug.
8. What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Trying to figure out the meds and the disease course. Beating back depression and staying positive.
9. What’s your biggest RA-related fear?
That I’ll pass it on to my granddaughter.
10. How many pills do you swallow every day?
Too many. Meds, vitamins, folic acid, calcium, etc. My tummy hurts. Ick.
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Uninsured right now. My company had mass layoffs last year. I’m back in school, and praying I have enough money for my quarterly blood work.
12. What do you wish people knew about Rheumatoid Arthritis?
How much it hurts, how bad the flares can be, how alone you feel.
13. What would you like to say to your RA? Get the hell out of my body!
Thanks for your meme Laura. Aha, the RA umbrella. yes. :umbrella:
1. How many other diagnoses (co-morbidities) do you have?
None that I know of. Depression, but that’s just part of it.
2. When were you diagnosed?
One year ago, although looking back on it I’ve had twenty years of symptoms.
3. How many Rheumatoid Arthritis treatments have you tried?
Countless aniti-inlammatories over the years, Lyrica (when they thought I had fibromyalgia), methotrexate, prednisone, then added humira, now remicade.
4. What kind of a reward do you give yourself after taking any medicine that you hate?
A nap!
5. Who helps you open doors or jars when you need it?
My sweet husband.
6. What would your ultimate good rheum doc do?
I have a really good Rheum Doc. I just wish when I leave a message with her nurse, she would actually call me back!
7. What’s your favorite comfort for RA?
Heating pads, hot baths, SLEEP!
8. What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Trying to manage work, kids, house, pain and fatigue.
9. What’s your biggest RA-related fear?
That my kids will get it. My mom has PA(still not sure if that’s what I have too) My mother-in-law and her mother have RA. Not very good odds. And that I’ll never have a real remission.
10. How many pills do you swallow every day?
Varies. 14-20(mtx days) More if I need a pain pill
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Hot tub for my mom. She doesn’t have a tub, Bless her heart. And I really liked someone’s idea earlier for help with house work!
12. What do you wish people knew about Rheumatoid Arthritis?
That just because I don’t have major deformities doesn’t mean I don’t have RA. That I’m really exhausted and I hurt. If I could work more I would. If I felt like I could exercise, I would. I don’t have RA because of the food I do or don’t eat! And I’m sorry if I’m missing girls’ night out. I really don’t think all I need is a drink and friends to feel better. I’m not abandoning you. I’m HURTING!
13. What would you like to say to your RA? If I must have you I will, but I will not stop trying to be a good mom. Take all you want from me, but leave my babies Alone!
Hi Dee. Thanks for your great answers. Can I ask – what does your doc say about your saying you had symptoms for 20 yrs.? I’ve heard some very strange reactions from docs on that.
That is a lot of RA genes in your family. Docs will need to begin to listen & treat earlier especially in such families.
How many other diagnoses (co-morbidities) do you have?
C5-C6-C7 fusion
When were you diagnosed?
Finally diagnosed in early 2007 after years of not knowing.
How many Rheumatoid Arthritis treatments have you tried?
MTX,Sulfasalazine, Arava,Enbrel, Remicade, Orencia, many steroid shots, prednisone, various nsaids.
What kind of a reward do you give yourself after taking any medicine that you hate? Small soft Ice cream cone of if it is really bad I go for Wendy’s classic triple with cheese.
Who helps you open doors or jars when you need it?
My wonderful wife
What would your ultimate good rheum doc do?
I love my Rheum doc’s, they beleive me when I tell them how I feel.
What’s your favorite comfort for RA?
Hot showers, ice packs, glass of red wine
What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Being productive at work and having energy to do anything after that
What’s your biggest RA-related fear?
Wheelchair
How many pills do you swallow every day?
It varies, right now I am off most meds because of antibiotics and what the Arava did to my liver (My favorite before the liver thing)
Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
More accupuncture, dietition, personal humor coach.
What do you wish people knew about Rheumatoid Arthritis?
Any thing at all would be nice. It is hard to understand what it is if you haven’t dealt with it. I wish people would stop telling me that I could cure it if I went to thier chriopractor, or turned vegiterian.
What would you like to say to your RA? chill out, relax, go to sleep you can always wake up later just give me a rest.
I love your answer for “what you wish people knew about RA”… anything at all indeed would be nice
Thanks, Phil! Personal humor coach – o my! Good one. I hope your liver is ok.
1. Have had 2 other diagnosis which my current doc says were totally ridiculous.
2. Diagnosed officially in 2009 after years of symptoms and shuttling between docs.
3. Seems like a lot but 6 in various combination’s with no complete relief yet but there is hope.
4. Never thought about rewarding myself after my injections. Might just have to try this one.
5. If I am willing to accept help, my family.
6. My ultimate rheum doc is the one that I currently have. He listens to me, believes me and offers me options. Not like the first one I had that said I was just depressed. I booted him real quickly.
7. My favorite comfort for my ra is a nap with my wife.
8. The hardest thing I have done since diagnosis, is not giving in to the pain and continuing to try to drive forward through the days. Also sometimes just believing that this is what is happening to me.
9. My biggest RA fear is that I don’t know everything there is about this nasty disease.
10. 10 pills a day currently. Guess I should look into some vitamins also.
11. I have good insurance so no complaints here. But I have not gone down the road that some of you have.
12. I wish people would understand the pain. It is 24/7 and never goes away. How hard it is to be talking to someone and all of sudden the pain shoots so strong and hard that it is hard to control your expression. I am not certain any one understands that each step, or grasping of the steering wheel can cause the pain that we experience.
13. What would I say to my ra? Why?
#12 – so true. #6: “booted” is fantastic. You needed treatment!! I’m learning that kind of assertive behavior. It helps to know we all are in it together.
1. Bi-polar, hypertension, asthma, OA
2. dx- 2007
3. treatments- 5 (6 including prednisone)
4. my treat- laughter, like big bang theory or always sunny…
5. my help- my 57 year old mother…and I’m a 31 year old man, how depressing is that
6. Rheum doc should- listen to and believe what I say, and ask me what treatment I would like to go with.
7. best comfort- again, laughter
8. hardest thing- work/go to school
9. biggest fear- I won’t get relief, therefore won’t ever be able to have a family…
10. pills- double digits
11. insurance- I agree with a quality mattress
12. RA IS NOT ARTHRITIS (I didn’t copy this one, I just feel that strongly about it.
13. what I say to my RA- leave me alone!!!!!!!! You may think I’m going to give up fighting you, but I never will.
It’s been very interesting to read some of these, thanks for sharing!
Hi Michael. “laughter like the big bang theory” – Nice!
Kelly, I published and shared mine on WEGO Health. http://bit.ly/axSb2A Thanks for a great set of questions! I’m hoping reading the variety of answers will help others understand RA and RA patients just a little bit better…
Cheers!
Thanks Ellen. Liked your meme too. Cheers. :coffee:
How many other diagnoses (co-morbidities) do you have?
Two
When were you diagnosed?
1982
How many Rheumatoid Arthritis treatments have you tried?
Before biologics came along? Probably easier to answer how many biologics – 7.
What kind of a reward do you give yourself after taking any medicine that you hate?
After an injection — a bowl of ice cream.
Who helps you open doors or jars when you need it?
My husband and co-workers (depending on where I am).
What would your ultimate good rheum doc do?
My doc rocks — asks how I am, what hurts, feels joints for inflammation, values my opinion and concerns re treatment.
What’s your favorite comfort for RA?
Hot bath or sitting on the sofa in front of a fire with a soft blanket. Recliner sofa has been my lifesaver!
What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
Lost my sports and athletic ability…having to say, “I can’t” and feeling like a wimp and PT after knee replacement surgery.
What’s your biggest RA-related fear?
That I’ll run out of options for meds (i.e., they won’t develop new meds before I have a reaction to current meds). The only allergies I seem to have are to RA drugs.
How many pills do you swallow every day?
Seven most days, not including vitamins.
Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Gym membership for access to pool, ice machine after knee surgery (arthroscopic or replacement)
What do you wish people knew about Rheumatoid Arthritis?
That just because something worked for their aunt, grandma, or friend’s RA doesn’t mean it will work for everyone with RA.
What would you like to say to your RA? You’ve had your way for almost 30 years! Can we please have a truce??!! I don’t want to lose any more joints!!!
Hi Vicki, 7 biologics. What can anyone say to you? Bless your heart.
1. How many other diagnoses (co-morbidities) do you have?
8- Primary OA, Sjogrens, Asthma, COPD, GERD, Depression,
Vit. D deficency, High blood pressure.
2. When were you diagnosed?
2005, but have had symptoms for more than 10 years. Kept
ignoring it.
3. How many Rheumatoid Arthritis treatments have you tried?
5 so far.
4. What kind of a reward do you give yourself after taking
any medicine that you hate?
Chocolate hands down!!!!
5. Who helps you open doors or jars when you need it?
Husband or 10 year old daughter.
6. What would your ultimate good rheum doc do?
Realize that I am a human being, not a disease.
7. What’s your favorite comfort for RA?
I have 9 sisters that are my comfort, my strength,my
heroes. Without them I couldn’t keep going with this
darn disease.
8. What was the hardest think you have done since being
diagnosed with Rheumatoid Arthritis?
Sitting down in my wheelchair the first time and
realizing that I would never walk more than a few feet
for the rest of my life.
9. What’s your biggest RA-related fear?
That my daughter will get this darn disease.
10. How many pills do you swallow every day?
23 to 25
11. Something surprising that you wish insurance would
cover for Rheumatoid Arthritis patients?
A wheelchair lift for my van and a ramp for my house.
12. What do you wish people knew about Rheumatoid Arthritis?
Just how life altering and devastating this disease is
to the entire body, the person, their family and
friends.
13. What would you like to say to your RA?
You do not own me or anyone else diagnosed with you.
You are not wanted go away and take all of your
damage with you.
My dear friend Jamie, I want to disagree. Number 11: that should not be surprising. It should be EXPECTED. Shame on them.
1.How many other diagnoses (co-morbidities) do you have?
None
2.When were you diagnosed?
Spring 2007.
3.How many Rheumatoid Arthritis treatments have you tried?
Four
4.What kind of a reward do you give yourself after taking any medicine that you hate?
My bedroom is my Haven and sanctuary- a good reading session in bed.
5.Who helps you open doors or jars when you need it?
My teenage son- who is now in effect is a Young carer- which really upsets me as I never wnated to do this to him.
6.What would your ultimate good rheum doc do?
Listen. Treat and reassure me.
7.What’s your favorite comfort for RA?
Hot bath warm bed shoulder to cry on
8.What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
I do it every day- I keep going to work and supporting my family and paying the bills – despite the chronic and at times unbearbale pain and fatigue
9.What’s your biggest RA-related fear?
That I will lose everything
10.How many pills do you swallow every day?
About 12- but it would be more if it weren’t for painkilling patches
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
NA in UK
12.What do you wish people knew about Rheumatoid Arthritis?
That fatigue isn’t just “tiredness” and isn’t always caused by doing “too much”- sometimes you don’t need to do anything at all. An early night doesn’t cure fatigue- neither does 10 early nights.
13.What would you like to say to your RA?
I hate what you have done to me. You have trampled on all my hopes and dreams. You took away my sunny outlook on life and made it grey with fear. My working days have turned from days of challenges and triumphs to days of endless drudgery on a road I cannot escape. You are the burden Of my daily walk, the fear of my daily thoughts, the sadness of my daily loss and the terror of my nightly dreams.
Hi Louella. great points about fatigue. Hard to get that message across.
I posted my RA meme on my facebook page. You can read it here:
http://www.facebook.com/note.php?created&¬e_id=119800468077255
Thanks, Alecia. I could not read it. Can you check the privacy settings on it?
Pingback: The RA Meme « Ancient Reptile
OK – I’m late getting mine up! Here’s the link to my blog: http://wp.me/p5MqZ-2f
No, it’s not late! We are just getting going. This is a new post still! I loved reading yours.
from yellowlablover on twitter
1. How many other diagnoses (co-morbidities) do you have?
too many —
2. When were you diagnosed?
Diagnosed in 2001 with RA
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?
Always a mountain dew and quiet time by my self
5. Who helps you open doors or jars when you need it?
My daughter is always around to help me out.
6. What would your ultimate good rheum doc do?
He would understand that time is precious for me – stop making me come in for every little thing
7. What’s your favorite comfort for RA?
Hot bath, my puppies (3 dogs) and having my daughter around
8. What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
Managing my life, staying employed and learning to take care of myself first
9. What’s your biggest RA-related fear?
Daughter will get it and it will never walk one day
10. How many pills do you swallow every day?
Everyday it is different.. could be 6 -10
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Heated pools, acupuncture and a trainer
12. What do you wish people knew about Rheumatoid Arthritis?
That it is much more complicated then arthritis and how debilitating it is. Yes, it is hard for me to walk down the street sometimes.
13. What would you like to say to your RA? You suck – but you can’t beat me – I will continue to fight and educate folks…you are going DOWN
1. How many other diagnoses (co-morbidities) do you have?
only 1
2. When were you diagnosed?
March 2010
3. How many Rheumatoid Arthritis treatments have you tried?
Too many. NSAIDS, methotrexate, plaquenil, prednisone and arava.
4. What kind of a reward do you give yourself after taking any medicine that you hate?
I reward myself with my comfy bed and a good movie and a special desert.
5. Who helps you open doors or jars when you need it? Anyone who is around! Grocery clerks, kids, employees.
6. What would your ultimate good rheum doc do?
Believe me. Even when my lab results come back normal, I still do hurt! It is very discouraging to think your doctor doesn’t believe you! : (
7. What’s your favorite comfort for RA?
Ice and my bed! (my sleep number is my life saver!!)
8. What was the hardest think you have done since being diagnosed with Rheumatoid Arthritis?
trying to make family and friends understand why I literally can not do something anymore. Or make them understand how much pain I am in.
9. What’s your biggest RA-related fear?
that my kids will miss out on their childhood “fun” times cause mom is always sick.
10. How many pills do you swallow every day?
bp, avara, plaquenil, folic acid, vit d3. should be on vit : (
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
I like everyones replies!! : ) How about ALL ra patients!
12. What do you wish people knew about Rheumatoid Arthritis?
it is not in our head! It is not arthritis.
13. What would you like to say to your RA? Why me? Why now? And don’t touch my children! I would like one day to see RA as a blessing, but I have a while to go before that happens!! : )
Thanks Jacquelin.