Comments on: Having a Cuppa Together: a Rheumatoid Arthritis Meme

By: Marie Bass

Marie Bass — Sat, 03 Nov 2012 00:14:07 +0000

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!!!

By: Cindy Fankhanel

Cindy Fankhanel — Thu, 06 Sep 2012 10:04:06 +0000

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!

By: Kyle Murphy

Kyle Murphy — Tue, 04 Sep 2012 04:43:45 +0000

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.”

By: Stephanie

Stephanie — Fri, 03 Aug 2012 15:44:52 +0000

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.

By: Kelly Young

Kelly Young — Thu, 02 Aug 2012 15:55:18 +0000

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.

By: Susan T

Susan T — Thu, 02 Aug 2012 03:20:57 +0000

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.

By: rose

rose — Sat, 17 Dec 2011 02:13:13 +0000

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!

By: Suzanne Theisz

Suzanne Theisz — Thu, 15 Dec 2011 14:07:38 +0000

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.

By: Stephanie Munson

Stephanie Munson — Wed, 30 Nov 2011 13:58:31 +0000

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!!

By: Trish

Trish — Sun, 13 Nov 2011 20:45:25 +0000

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!