Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Speaking with a friend yesterday, he remarked that some medical complications he was having weren't causing him pain, they were just a pain in the . . . well, you know. We'll use the acronym PITA from here on. I started thinking about his comment, and decided that I have a much larger tolerance for physical pain than for PITA.
Not being able to open my prescription because they mistakenly put a child-proof cap on it. Geting a crappy little 2ml bottle of methotrexate instead of the 10ml the doctor prescribed. Three weeks to hear back that a MRI has been approved. Erroneous electronic medical records. Rude and incompetent people answering phones at the doctor's office. An hour + in the waiting room before being called back to wait some more in the exam room. 2 1/2 minute doctor appointments. Insurance foul-ups. Too many appointments. Asking for yet more time off work for this or that. Going to an appointment with a new doc named Larry and finding out he's in practice with Curly and Moe, with Shemp managing the office.
This is what makes me crazy.
A raft of baggage comes with physical pain, and none of us like it. But, I understand what is causing it and have learned to live with it. No choice, I guess. The PITA stuff, though, really gets me down. So much of it seems avoidable and unnecessary.
How about you: pain or PITA- what's more discouraging?
Not being able to open my prescription because they mistakenly put a child-proof cap on it. Geting a crappy little 2ml bottle of methotrexate instead of the 10ml the doctor prescribed. Three weeks to hear back that a MRI has been approved. Erroneous electronic medical records. Rude and incompetent people answering phones at the doctor's office. An hour + in the waiting room before being called back to wait some more in the exam room. 2 1/2 minute doctor appointments. Insurance foul-ups. Too many appointments. Asking for yet more time off work for this or that. Going to an appointment with a new doc named Larry and finding out he's in practice with Curly and Moe, with Shemp managing the office.
This is what makes me crazy.
A raft of baggage comes with physical pain, and none of us like it. But, I understand what is causing it and have learned to live with it. No choice, I guess. The PITA stuff, though, really gets me down. So much of it seems avoidable and unnecessary.
How about you: pain or PITA- what's more discouraging?
I saw my Rheumy two Thursdays ago and we discussed going back on the Actemra. We pretty much decided what to do but he wanted to get another's Rheumy input (the one at the Actemra monitoring clinic). He dictated the letter right in front of me so I know he gave a quick summary of where we were at. My Rheumy told me to call in two weeks and he'd have discussed it with him by then. I phoned on Thursday and left a message. Apparently my Rheumy hadnt heard from him or even followed up as the only call I get back is from the others guys nurse. She has been asked to get a first hand account of my status.... I just gave my Rheumy a first hand account HE has all that information.... Why are they calling me.. The other doc should be speaking with my Rheumy not me.
I didn't get the message in time to phone her back Friday. The clinic only runs once a week so likely nothing will happen on thier end until next Friday... All so my Rheumy can get a second opinion from the guy who blew off my abdominal symptoms as nothing (bowel perf, in intensive care 3 days later). GEESH.
I sent an email to the nurse (hope its still her Addy) and faxed it to the main clinic office as well as my Rheumy office. I went over my status again and what I wanted to do and basically said I wasn't gonna wait until next week. It was mostly for my docs benefit... Get your ass in gear and just do it already... But I hope slightly more subtle than that.
I've been symptomatic since Oct of last year and finally got surgery done and I am healed up and ready to go... Yet they are wasting time. Pretty soon my arms will be so messed up I won't even be able to transfer to the wheelchair to get to the bathroom.
I'm having to consider bringing in home care everyday and they are playing phone tag (memo tag).
I need a new doctor... One who has the time to follow up in a timely fashion. I have to call to remind him to follow-up... Last time I checked I'm not his secretary or medical assistant. PITA.
And all this has nothing to do with my disease and it's complications at all.
I agree that I can handle the pain much better than the pain of dealing with inept people. I've learned to understand what causes my pain thanks to me research and all the help I get here. That I can deal with because I know WHY it is happening although very uncomfortable.
But dealing with all the other stuff I listed above makes me nuts - and I have found that with all those struggles dealing with people makes my RA go wild.
So yes - I'll take the pain over the PITA any day!
I have dealt with confirmed RA for 4+yrs now and I'm sick of it! All I want to do is "have my RA and take med for it". I know that means ups and downs but I can't even get this far!
Stupid liver. (which I desperately need)
Stupid diabetes from prednisone (which makes me second guess any steroids)
Stupid lower back pain that is unrelated to RA
Stupid and very frustrating ANXIETY! This is the worst. I get all kinds of vibrations and twitches and I just want to put them aside and move on.
I had my final liver panel today and assuming it's good, will discuss options for med. It seems the least offensive is plaquenil, but we'll see what the docs have in store.
It's all a PITA! And I hate that I am irritable to my dearest loved ones because of it.
Pain is my biggest enemy. hands down any week, month, or day.
I can do paperwork and frustration up the wazoo. I don't know why. I just can. the more is brought on, the more I can do. I think it has something to do with all those college appeals. It's like part of my blood chemistry or something.
but pain?
it makes me feel helpless, it causes "what if" syndrome (what if I lose the house, what if I no one finds me int he driveway when I fell this winter) that kind of crap.
Without the pain I am superwoman.
the frustration of the administration of "being sick" is less frustrating to me on a bad day, than the kids financial aid packages for high school and colleges, scholarship applications that were 55 pages long, merit appeals, every piece of paper having to do with divorce, 16 years of single mom/'ness, kids, dogs or the house. That was a challenge.
I find the paperwork and the frustrations of insurance companies with RA less than the frustrations when my daughter wore a body brace for scoliosis for 6 years and I had to watch HER pain, or my son needed medical care long distance 3000 miles away in college. My own RA administration? I find that much easier than the aforementioned..
Just do something about the pain. It is ruining my life, slowly in a drip drip drip. it feels like hot tomato soup in my bursa's and joints.
can you tell the bursa's have been in my face for a week or more?
Depot
"Cannons to the left, cannon to the right", that is how I feels about both altoclef. Yet, forward do I continue to trudge.
The pain weakens my tolerance of which I have almost none now, in fact I'm dieseling most of the time and avoid taxing situations because I will loose my cool.
The PITA-I keep detailed records and typically will only take on one thing for a day or longer if needed. What helps for me is accepting almost 100% of offices,institutions are plagued with the same systematic/personnel dysfunction so I don't expect anything more.
Recently I applied for Long Term Disability-the representatives were very good but as usual I held out for the final outcome. They called last week to let me know my claim was approved, had the financial data , etc. What a nice change of pace- I'll take it for a change!
OKAY why would my Rheumy not already know that? I asked her if she had any info on ETA of Approval... NO. Okay what about the drug company? She didn't know...this is the drug monitoring clinic for Actemra for the entire greater Vancouver area and she doesn't know if the mfg is offering financial support for new SubCu?
They only have USA version of the web-page which clearly states that they will cover the SubCu formulation until you're insurance company makes a decision. So I just had to ask if it also applies in Canada.
http://www.actemra.com/Coverage-and-Assistance/coverage-and-assistance.html
I called the Canadian Joint Effort Program and it only took a couple of minutes to confirm that YES they offer the same thing in Canada! My Rheumy just has to fill out the referral form and they will take care of it...FREE of charge....I LOVE this drug company. They covered a deductible for me last year too, these guys are awesome.
PITA why the bleep doesn't the drug clinic knows this, I gotta tell them? My rheumys assistant called to say he wanted to see me again next week. Likely to break the news about IV only being covered and to fill out the MSP paperwork. UM NO simple referral form only needs verbal consent, fax to Joint Effort and DONE! No waiting for weeks for govt payment approval for IV. Doesn't even need to see me GEESH can they waste anymore of my time.
http://rheuminfo.com/physician-tools/actemra-joint-effort
PITA I gotta tell my doc all this, he used to be so Up-to-date and on top of it. Likely Roche will have the ball rolling by mid week and I will have the version I wanted SUBCU by end of June.
If left up to my doctors I would not have gotten what was the best option for me. SubCu is much more flexible with interval and dosage allowing me alot more control of infection risks.
Depot & Sally, you two seem to have the highest tolerance for PITA. Are either of you available for hire? Sally, I have an ortho appointment next week. Will you go with me? And Depot, if dealing with the endless rounds of paperwork doesn't make you nuts, a few folks could use your help. Brava to you both.
Bcatz, interesting that your version of PITA is more internal, feeling like a late-stage Jenga tower, not knowing which block will bring the whole mess down. Lynn, sorry to hear that Canada is as full on incompetents as the US. Speaking of which, Beechfeet, is there some equal opportunity hiring law mandating that each office take on a few uncaring morons, and put them in jobs where they deal directly with the public? Coaltrain, I had a hunch which side of this equation you would come down on. I'm looking for a bobblehead doll for you of the nefarious Amber- or would you prefer the voodoo version?
From what I can see, the larger the organization, the more PITA they hand down. I guess it's easier to play "pass the buck" if you work for a large insurance company or state government than if you work for a doctor in solo practice.
Alto is right very close relationship between the two.
My life is full of PITAs as we speak. I have little tolerance at the time.
If PITA is caused through someone simply not doing their job or negligence I have little tolerance. I honestly don't know how some people sleep at night knowing what they cause others.
Large companies like pharmaceuticals are different. PITA has no discrimination for those requiring their product.
Drs, to often forget the patient has a life & their patients time can be just as important.
Pain is easier to deal with when PITAs are not around.
Yet I'm sick of pain. To some degree I can attempt to control my pain PITA on the other hand, well can't control the world or people who simply do not care who's world they rock while causing PITA.
The way I deal with both is a work in progress.
To much PITA can open the door for increased pain.
Sorry Depot it's just so dang hard to deal with day in day out.
Lord knows.
Through both its constant reminding to find a posative. Try to smile, laugh, some small pleasures. It's reminding myself not to let it all take over my life. Some days it's darn hard.
Good question.
Sammy