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
Kelly, looks like many people want to be heard, you give them a voice. God Bless you!
Here’s my first:
1.How many other diagnoses (co-morbidities) do you have?
Probably around 15, most have been listed, nearest and dearest being congestive heart failure which led to a pericardectomy, Fibro,gum disease, Sphenoid Disease,low vision,anxiety,tinnitus for 2 years straight,Optic neuritis, falling ALL THE TIME no diagnosis for that just total embarassment.
2.When were you diagnosed? A long long time ago right after my daughter was born, 1985
3.How many Rheumatoid Arthritis treatments have you tried?
Impossible for me to count at this time. Biologics are on 4 and I can’t get back on biologics due to infections
4.What kind of a reward do you give yourself after taking any medicine that you hate?
A nice long nap.
5.Who helps you open doors or jars when you need it?
My hubby and daughter or I sit there and get mad as heck and try every way of possibly opening that bad boy jar! I tend to use my body to open doors.
6.What would your ultimate good rheum doc do? Listen., respond with empathy, explain why,tell me I’m not alone and they are going to fight for me. Oh, and that they can cure me
7.What’s your favorite comfort for RA?
Jacuzzi and the laptop battery heat, I warm my hands with it.
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis? Open heart surgery for 14 hours. Getting up some mornings. Trying to make people understand what I have.Charity events that I want to drop afterwards.
9.What’s your biggest RA-related fear? Die alone, divorce.
10.How many pills do you swallow every day? variesbut about 12, plus a few shots.
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?Massage therapy. Body wrap therapy, not sure what it is but it sounds good.
12.What do you wish people knew about Rheumatoid Arthritis?
That most of them don’t have it and that they would not say ” Didn’t the doctor fix that,I thought you are all well now.”
13.What would you like to say to your RA? Go away! Don’t come back, please let me live a life where I can run, jump and beat my husband at tennis and play with my grandson.
thank you Janette. It is a small thanks for this good information and inspiration you all put here. But, thanks is all I have. 🙂
1.How many other diagnoses (co-morbidities) do you have?
High Blood pressure, due to NSAIDS I think, but it’s hard to tell, stopped taking most prescription drugs once I realised they were causing other problems. Even tried Viox for about 2 days, luckily it made me nauseous so had to stop.
2.When were you diagnosed?
Originally in 1997, then 1999 after having symptoms periodically since 1977 I was diagnosed with Juvenile RA – apparently pretty much in remission for 15 years until it flared in 1997. No positive blood test for RA but my hands are distinctively RA deformed! First rheumatologist diagnosed Ankylosing spondylitis.
3.How many Rheumatoid Arthritis treatments have you tried?
I’ve tried the standard NSAIDS, but refused SALAZOPYRIN, methotrexate, PLAQUENIL and various others once I researched them. I decided my philosophy would be to avoid life threatening drugs for a non-life threatening disease. I knew the risks and have the deformities to show for it, but I’m a bit of a whimp when it comes to injections etc.
Currently I self medicate with an Austalian paracetamol called Panadol Osteo – which gives slow release relief for 6 hours and I pair that up with a wonderful health food additive call serrapeptase which I bring into Australia from Canada – it’s a naturally occurring anti inflamatory with only one side effect – it thins the blood. I did my homework and have found that these two together give me better pain relief, with no side effects that nay of the NSAIDs, equivalent to Celebrex in high doses. Plus the serrapaptase cleans up by blood, helps with high blood pressure and is also (not clinically proven) helpful with cardiovascular disease.
4.What kind of a reward do you give yourself after taking any medicine that you hate?
I don’t hate any of my medications, because the give me relief. I’m a wimp when it comes to doing anything that makes me feel worse than I already do!
5.Who helps you open doors or jars when you need it?
I have accumulated quite a few gadgets over the past many years, several jar openers, tin openers and special taps and door handles. I even found a disable tap for the kitchen sink – itt looks like a golf club but I can turn on the tap with my elbow and it’s very smooth. Otherwise my husband and boys are always willing to help.
6.What would your ultimate good rheum doc do?
Know what I should expect and don’t treat me like I don’t need to know. Just because I’m disabled doesn’t make me dumb!
7.What’s your favorite comfort for RA?
Heated swimming pool, hot shower, electric blanket and cuddles from my kids. My husband also does a wonderful back rub (he should be RA certified but I’m not keen on sharing him around!)
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Finished my Masters, had another baby (couldn’t take any meds but did find relief of all pain during pregnancy – anyone else found that?), kept working for several years until I finally had to admit to disability.
9.What’s your biggest RA-related fear?
Heart disease and not being mobile.
10.How many pills do you swallow every day?
12 on a good day, upto another 6 on a bad day!
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
In Australia we have public health, so many treatments are covered. I can’t get any useful health insurance due to ‘pre-existing’ conditions (I’ve had RA forever).
Also many of our private health providers are already taking on preventative treatments – but who knows how easy it is to claim them!
12.What do you wish people knew about Rheumatoid Arthritis?
That shaking hands is awefully paindful and standing still makes my knees swell up. I also would like my girlfriends to understand how difficult it is for me to make it lunch or to travel or that shopping trips are completely out of the question (thank goodness for online shopping!)
13.What would you like to say to your RA?
I know you are part of me, that my own body has manifested you upon itself but I wish you would just bugger-off!!!
1. How many other diagnoses (co-morbidities) do you have?
Fibromyalgia and migraines
2 When were you diagnosed?
2005, but it took several years to reach the dx of RA. And recently my dr has suggested that I probably have AOSD (Adult Onset Still’s Disease).
3 How many Rheumatoid Arthritis treatments have you tried?
I’ve lost count…at least 7 or 8.
4 What kind of a reward do you give yourself after taking any medicine that you hate?
Chocolate is always good!
5 Who helps you open doors or jars when you need it?
John or Hilmi. I’ve even asked a guy filling the vending machine at work before when I couldn’t get my drink open!
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. (This is Kelly’s answer and I totally agree with it. Kelly, you would have been absolutely impressed with how thorough and in-depth our conversation was!!)
7 What’s your favorite comfort for RA?
Hot baths…love em.
8 What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
getting used to being stabbed with needles. I’m so sick of needles. Learning how to give myself an injection despite this deep fear and hatred of needles. Coming to terms with knowing that my life is completely different than I thought it would be.
9 What’s your biggest RA-related fear?
That one of my children will get it. (Amen to that, Kelly. I still get paranoid when John complains about any type of pain!)
10 How many pills do you swallow every day?
7, plus my injection each week.
11 Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
massage therapy. none of the insurances I have had will cover that. And I wish that we wouldn’t have to fight with our insurance in order to get some of our meds approved. It’s ridiculous.
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. (Again, I have to agree with this answer and add: please stop assuming that RA can be treated with herbal remedies or a complete diet change! If that were so, we wouldn’t have rheumatologists or a need for high-powered drugs! I really appreciate your concern for my health, but I trust my doctor and I know what is working for my body and what doesn’t.)
13 What would you like to say to your RA? I don’t like these sneak attacks…where I’m feeling fine one minute and then the next I’m running a fever and feel like I’ve been hit by a bus. I’m tired of having to live my life minute to minute and not being able to make plans because I have had to cancel on my friends so many times because I can’t get out of bed! YOU SUCK.
Thanks for adding yours, Tina. Great job portraying real life version of RA.
1. So far just 4.
2. August 2006.
3. 4
4. I don’t reward myself.
5. My husband.
6. I have the Ultimate Rheumy Doc.
7. A weekend at the camp.
8. Leave my job and try to make it on one income.
9. My biggest fear is that my husband will leave me or end up resenting me.
10. Four pills, 1 injection, 1 infusion and four supplements.
11. Hot tub
12. How painful it really is.
13. Go away and never come back.
Thanks, Robin.
Oh my goodness – I just read back through my initial response and saw that under co-morbidities I wrote ‘Alcohol related Fatty Liver’ – and I missed out the ‘NON’ as in:
“Nonalcoholic steatohepatitis or NASH is a common, often “silent” liver disease. It resembles alcoholic liver disease, but occurs in people who drink little or no alcohol. The major feature in NASH is fat in the liver, along with inflammation and damage. Most people with NASH feel well and are not aware that they have a liver problem. Nevertheless, NASH can be severe and can lead to cirrhosis, in which the liver is permanently damaged and scarred and no longer able to work properly.” Definition quoted directly from the ‘National Digestive Diseases Information Clearing House’ website.
It definitely bothered me big time when I read what I had written as I rarely drink alcohol at all. I realise that I have huge fears that people would think ‘Oh well she only has herself to blame’ and would view me differently. Ahhh the record has been set straight 😀
1) How many other diagnoses (co-morbidities) do you have?
Two
2) When were you diagnosed?
2009
3) How many Rheumatoid Arthritis treatments have you tried?
Seven
4) What kind of a reward do you give yourself after taking any medicine that you hate?
It’s hard, because I look forward/hate the same medication. I hate self injecting, but I love the feeling afterward of having some energy. I wish that lasted more than one day…I guess, I play on that day. That’s my reward.
5) Who helps you open doors or jars when you need it?
My boyfriend. God bless him. He gets mad at me when I don’t ask for help.
6) What would your ultimate good rheum doc do?
Oh, listen to me for longer than the “treatment” part requires. Mine is pretty good, but she’s so busy, and there’s more to this than the disease. There is a person who has the disease, and that person is floundering.
7) What’s your favorite comfort for RA?
Hot tub, hands down. Heat is my solace. We keep our house on 75 through out the winter. Luckily, my boyfriend is a “Pro heat” kind of guy.
8) What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Graduating from college. (I kept falling asleep in class. My fatigue is terrible.)
9) What’s your biggest RA-related fear?
Not being able to work anymore.
10) How many pills do you swallow every day?
Fifteen, and two injections twice a month.
11) Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Heated seats in vehicles. This is my biggest comfort outside of the hot tub.
12) What do you wish people knew about Rheumatoid Arthritis?
I may look okay, I’m not. I may seem better, I’m not. If I fall asleep in class or in a meeting it’s not because I was out late last night. I cannot help it. If you ask me how I’m doing/feeling the honest answer is “in pain” as that is the all time, every day answer. I cannot commit to dinner/plans because everything in my world is dependent on how I feel. And it is not like osteo arthritis. In fact, I have stopped saying I have rheumatoid arthritis. I say I have an auto immune disease.
What would you like to say to your RA?
It may not be better but be damned if I will let you win.
I will beat the darkness back. Also, I am amazed at the blessings this has brought into my life. I have learned to stand up for myself, I am learning to be proud of small accomplishments, and I am taking time for me, because I have to.
Dear Jennifer,
Thank you for your answers! I loved reading them and I know they will be a help to others. Keep fighting, sister.
Kelly,
I am sitting here nearly in tears because of your wonderful website; I cry too many bad tears, it’s nice to have a good reason.
Thank you for your time and energy. *hugs*
Jennifer
Hi Kelly,
It’s been quite a while since I posted my answers to your questions so I thought I would update!
1. How many other diagnoses (co-morbidities) do you have?
RA, Sjogren’s, Fibromyalgia, Anklosing Spondylitis, Asthma, GERD, OA, and just diagnosed with Lupus. sigh
2. When were you diagnosed?
Diagnosed in 2009 with RA but, it was recently determined that I’ve probably had it for about 10 years.
3. How many Rheumatoid Arthritis treatments have you tried?
Six!
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 roommates.
6. What would your ultimate good rheum doc do?
Find a CURE! But I would settle for managing my pain better.
7. What’s your favorite comfort for RA?
Comfy pillows, memory foam bed, and my cats cuddling with me!
8. What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Trying to get my family to understand; and asking for help.
9. What’s your biggest RA-related fear?
Ending up in a nursing home since no family members would be able to care for me.
10. How many pills do you swallow every day?
Everyday is different..15 most days and 25 on Fri, 17 on Sat.
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Heated pools, Vitamin D
12. What do you wish people knew about Rheumatoid Arthritis?
That it is NOT Arthritis, it is a systemic killer disease which causes pain ALL the time, even when your meds have it in remission.
13. What would you like to say to your RA?
You are EVIL! I refuse to let you win!
1. back problems, neck and feet
2. 2008
3. 3
4. none, just take pills, but would get a shake if I took shots or IV’s
5. My husband and staff at work are good to me
6. Same as Kelly
7. my heated mattress pad
8. getting over being afraid and slowing down
9. that my grandchildren will get it
10.way too many
11. massage therapy once a week
12.that I may look fine, but I ache everyday and it is not what your grandparents have!!
13. I will not let you get me down!!
I felt like you answers on many of the questions were my own. I especially felt it when you mention the fear of your own child getting it. My middle son has some of the same issues I did as a kid. I always joke that he is my healthier kid, but now I worry what he might face one day. One of my biggest fears. Thanks for your site. My friends showed it to me when I needed it most. Hoping that I can start to be a strong advocate like you one day. Thanks for speaking for all of us.
1. 3
2. Finally in 2008 after many years of searching for answers
3. A lot in combinations -finally getting some relief
4. I don’t need a reward after treatments because I get a sense of self-empowerment over RA each time. It’s a mind thing.
5. Husband
6. Take more time with me and treat aggresively, listen to my concerns about side effects
7. Spa with no jets on just hot soothing water soaking up to my neck
8. Hardest thing I have done is give my self my own injections in the stomach area. It’s that self-empowerment thing.
9. Biggest fear is that I will be totally crippled up and unable to do even the basic things for myself
10. Number of pills varies
11. Hot water spa and accupuncture and alternate healing practices
12. I wish that people knew what RA is and that it is not the “old peoples arthritis”
13. I say would RA “to be damned that I will live my life just the way I want (with some modifications) That I have RA and that RA does not have me. I will never surrender no matter how horrendous RA tries to be” So take that!
what are rescue olives? why do you take them after methotrexate? do they help? looking of any kind of relief from the mtx side effects.
olives are one of the several foods that people have recommended because they have been used by cancer patients to help fight the nausea. I’m not sure if its the salt content or the strong flavor or something else, but they sometimes help get thru the nausea. There are other suggestions in some comments on mtx posts & one page of suggestions on the mtx tab on the menu at the top of the page. Peppermint and ginger are classic ones – they can be in a candy or tea. Hope that helps.
1.How many other diagnoses (co-morbidities) do you have?
Fibromyalgia and various spine issues, so 1+?
2.When were you diagnosed?
I was very fortunate to have a fantastic primary care doc in 2008 when my symptoms started so my diagnosis only took a few months. I wish everyone could be so lucky.
3.How many Rheumatoid Arthritis treatments have you tried?
Let’s see: methotrexate, leflunomide, Enbrel, Humira, Rituxan, Remicade…so, 6.
4.What kind of a reward do you give yourself after taking any medicine that you hate?
After infusions I’ll treat myself to something from the coffeehouse or splurge on lunch out, depending on what time I’m done.
5.Who helps you open doors or jars when you need it?
My boyfriend does all those little things for me when I need it and sometimes even insists on doing them when I think I can, to save unnecessary stress on my joints. He is truly my hero in more ways than I can count.
6.What would your ultimate good rheum doc do?
Give more weight to what I say about my disease activity than to what my labs say. Trust my perception of my pain and how my RA affects me. Utilize any and all methods available to look for damage being done to my body by this disease instead of relying solely on joint X-rays to tell the whole story.
7.What’s your favorite comfort(s) for RA?
Warm fuzzy socks. A slightly cold pool. Anything that makes me laugh. My pain meds.
8.What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
Graduate college. Accept limitations. Hold on to hope.
9.What’s your biggest RA-related fear?
That the meds will stop working at all.
10.How many pills do you swallow every day?
20-25 depending on my pain level throughout the day. 6 more on mtx day.
11.Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Have to agree with Kelly on this one: “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)…”
12.What do you wish people knew about Rheumatoid Arthritis?
That it is NOT “just arthritis”. How excruciatingly painful it can be, even with good treatment. How good we RArs are at masking how awful we feel most of the time.
13.What would you like to say to your RA?
No matter what you do to me, you will NOT win.
1. Four. I think. Anxiety, mild asthma, vasovagal syncope, and Raynaud’s (probably).
2. Not officially diagnosed but my symptoms fit. I’m just lucky enough to not have swelling too often (knock on wood). I’ve had symptoms for over two years now.
3. Six. Prednisone, Plaquenil, MTX, Humira, Enbrel, and Arava.
4. My medicines are all pill form now, but when I had to do shots, I always had a nice home-cooked meal that day.
5. My family and friends help. My mom tries to help (she has OA in her hands), and she’s quite stubborn so I have to get her to stop.
6. My rheumatologist is pretty good. He runs a lot of tests and is relatively willing to try new meds. Also evaluates my joint ROM at each visit, which is nice.
7. Warm pajama pants and warm wooly socks for when I’m flaring.
8. Good question. I would have to say juggling school and all of my RA symptoms.
9. Another good one. If I had to pick one, not being able to function later in life.
10. Five. But I’m not on any RA specific meds right now.
11. I like the access to a heated pool idea.
12. What we all go through on a daily basis.
13. Many things I would like to say to RA should not be written down. As the great Maya Angelou said, “I can be changed by what happens to me. I refuse to be reduced by it.”
Too many to count is right , I supposedly had , premenstrual syndrome, carpal tunnel ( but they just could not figue out the inflammation)Gout,lupus, bursitis, from 36 years old..Symptoms were unbearable!
2. I was FINALLY DIAGNOSEDin 1999.She called me after i had a bone scan to my left foot because I stepped and it felt like it broke, it cracked that hard.She missed it the first time, and then called me back, at work to tell me ‘your rheumatoid factors are off the scale.’
3.Methetrexate, which made me slow and stupid, and Iwas tech at Dish and needed awake and alert on 4 – 10s and mandatory overtime.Celebrex, allegic to, Placquenil, ( allergic to) ,Vioxx great for pain took it off the market, Arava, liver failed from ( but the insurance demanded it first before they would allowbiolgics (gotta love United Healthcare)Enbrel, gran mal seizure from it, then Humira , it became ineffective, now Cimzia the eighth medicine for rheumatoid disease
4.frozen yogurt, or silvermine subs. Cimzia are much harder and thick so they take longer to inject, especially abdomen, i am getting better though.
5. Jar grips from Dollar store work, along with banging the jar on the formica, and running it under hot water ( expands the lid)
6. Wouldn’t sit there looking like Doogie Hooser telling me there is not anything they can do for pain. Wouldn’t suggest stupid things like prednisolone just because the insurance( Kaiser ) is too cheap to pay for anything else.
7. Ditto on the hot bath, without a doubt best thing fo ra is warm water..as many pillows as i can find and just the right roll up into a ball position to try to not put too much pressure on any shoulder or hip joint.
8.being ignored or made to feel like i should never talk about especially by my kids.
9.That it would put me onto disability, and would feel like a burden to society and also pretty useless.
10.3 calcium and loratadine , tylenol as needed 3 Big deal, I hate taking pills.
11.shots for inflammation in the joints especially shoulder,breastbone-thorax,knees, hips inner pelvic tempo andibular joint,shoulderblades.Cure this stuff before it eats me alive !
12.I wish people understood that people who have ra are not contagious,or depressed, or anything about lazy, just like a heavy coat is always present weighing me down.How hard I have to work to pretend that I feel ok,how seldom I d tellmy loved ones how much I wish I could have been the mom who could have goneout an dplayed more often. How I wish they would understand that I can not go and go and go, how napping is not my favorite thing , how I fight to try tobe awake and out n the world , just to feel like I am like everyone else&can. I wishI could goto an amusement park and ride anything there with them. How I wish I’dnot feel likeI was going to drop over , how I am sick of ‘side effects that cause upper respiratory infection and urinary tract infections. ‘How tired I am of worry and the extreme pain if I have to be typing for long tims or writing for a long time or sitting for a long time. Running Fevers , I never hve bee a patient patient, I am the worst person in the world to be stuck with this because, “I don’t get sick!”
13. Well, it is easy to understand a the ‘messenger of Satan to buffet me ” part of the Bible.
I’d say thank you, for you are an affliction that brought me closer to God,people with RA have to rely on God, and he gives us more faith in Him than we ever thought possible. But to my flesh , the carcass i get leave behind?BYE!!!!!!!! No more pain, no mor edoctors , no more pestering about labs , or reupping perscriptions, or explaining for the nine teen thousandth time that I have debilitating disease that I can not do anything but treat.
I would tell it to let me have a vacation and rememeber what it was like when it did not exist. I do not remember a time like that at this point,also tell it I DO NOT WANT To BE STOIC I WANT TO FIND A CURE < IF GIVEN a RHEUMATOLOGICAL RN JOB< I WILL DIE TRYING DOING JUST THAT!Rheumatoid research,within 10 years time , we get you!
How many other diagnoses (co-morbidities) do you have? One – until reynauds and RA my only problem was that I’m overweight.
When were you diagnosed? 2009
How many Rheumatoid Arthritis treatments have you tried?
3 – and Thank God they’ve been successful until my current flare.
What kind of a reward do you give yourself after taking any medicine that you hate? Haven’t really thought about that- just do what I have to do.
Who helps you open doors or jars when you need it? My wonderful husband.
What would your ultimate good rheum doc do?
I have the most wonderful rheumy already -he always asks about my pain, does a great assessment of my joints each visit and makes adjustments to my meds accordingly. Wouldn’t trade him for anything!!!
What’s your favorite comfort for RA?
Hot bath and cuddling with my hubby who VERY gently rubs whatever joint is bothering me the most.
What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis? Making adjustments to my life and accepting my limitations without giving in to this monster!
What’s your biggest RA-related fear?
That one of my children will get it and that I will not be able to safely hold my grandchildren
How many pills do you swallow every day?
If I take all the vitamins about 10 – regularly take 5 M-Th and 12 on Fridays.
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 or installation of heated pools for purpose of physical therapy. Yeah- what she said!!
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 WILL NOT stop me, You WILL NOT defeat me – I WILL fight you with everything in me. My GOD is mightier than you are and HE is in control!!!
How many other diagnoses (co-morbidities) do you have?
Fibromyalgia, hypothyroidism, depressing, anxiety, history of polymiositis, possible Wegener’s.
diagnosis: 2010 after three years of RA symptoms, decades of pain and fatigue beginning in my teen years after Epstein Barr virus and or Hashimoto’s thyroiditis.
How many Rheumatoid Arthritis treatments have you tried?
Methotrexate, plaquenil, sulfasalizine, flurbiprofen, prednisone.
What kind of a reward do you give yourself after taking any medicine that you hate?
A warm bath, some sour jujubes.
Who helps you open doors or jars when you need it?
My husband and a really good jar/bottle opener that requires very little strength
What would your ultimate good rheum doc do?
Examine my body, not just my hands. Order preventative screening tests for organs rather than wait for obvious signs that they may be affected.
What’s your favorite comfort for RA?
Hot bath, heating pad, pjs, tea for my sore throat, my dog snuggled up, and taking off my torturous bra the second I walk in the door.
What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
1. Admit o myself hat I’m no longer able to Orkney and be the mom I want to be to my kids; and 2. Send my husband and kids to an extended-family celebration without me when I wasn’t well enough to go.
What’s your biggest RA-related fear?
Dying young. Passing it on to one or both of my kids.
How many pills do you swallow every day?
Approximately 15 depending on the day.
Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
Massage, child care/respite, counselling (including marital!)
What do you wish people knew about Rheumatoid Arthritis?
How debilitating it can be even with no visible signs.
What would you like to say to your RA? Thank you for the persistent reminders to take care of myself and guard against absorbing the stress and negativity of others. I’m pretty sure I get it now and no longer need your help. Goodbye and good riddance. Please leave my children the $&@! Alone! I will teach them these lessons myself. I won’t miss you. But I promise to continue fighting for others who suffer even if I get rid of you.
Note re: above: the hardest thing I’ve had to do — the answer should say “Admit to myself that I can no longer work. . .” rather than “no longer Orkney”. No idea where that came from. Forgot to proofread. Blame the brain fog. Believe it or not, I’m an editor. I was good at it before RA.
1. Anxiety & Depression. Gastritis & IBS
2.Approx 4 yrs ago.
3. Methotrexate/Enbrel/Humira waiting to start Orenzia.
4.Wait to the weekend and have a white wine!
5.My wonderful husband and 14 yr old son.
6.I love my current Rheumatologist.He listens cares and keeps trying.
7.Hot bath/jammies/sofa/British TV
8.Delegate! Give up volunteer work at school. Not maintain my lovely house. Most of all dancing.
9. That my son will get it.
10.10 or higher
11.Mani/Pedi
12.Its so exhausting – every single day presents great mental and physical challenges.
13.Why do you do this to me? I’ve always taken good care of myself.