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...
And not just by a rheumatologist either!
My daughter had a serious flare in January. It screamed JRA at me and we started taking her to the doctor to be seen. Th ey kept sending her for tests and doing nothing about how she felt. It took three emergency room visits in two weeks to get someone to prescribe an anti-inflammatory that did anything.
They kept insisting on a nerve conduction test in her hands and wrists (They just wouldn't listen to her when she talked about the other joints that hurt. )
So she goes through the nerve conduction test and they schedule the follow up three weeks out - this morning. I had been gearing up to do battle with the doc for three weeks since he was so disparaging of my theories while my husband was there.
So they called this morning to cancel. The doctor we had been scheduled for has had a family emergency. Our regular doctor? The army has moved him away. They wanted us to schedule an appointment several more weeks out.
So we went in anyway and I just refused to take no for an answer. They tried every subtle technique (the "we outnumber you", the "there's nothing we can do", and the "those are the rules" ones) It was when they realized I was prepared to roam the halls until I found someone highly ranked enough to tell me why we weren't interested in helping my kid that they took us to a room. (I used the "I'm taller than you" and the "drop you voice deeper trick" to exude more authority.)
So I have a referral for her. That's all I was hoping for anyway today. The big question is whether they will let us see my rheumy who is 350 miles away or if they will make her go to Seattle for a pediatric rheumatologist - 2200 miles away...
My daughter had a serious flare in January. It screamed JRA at me and we started taking her to the doctor to be seen. Th ey kept sending her for tests and doing nothing about how she felt. It took three emergency room visits in two weeks to get someone to prescribe an anti-inflammatory that did anything.
They kept insisting on a nerve conduction test in her hands and wrists (They just wouldn't listen to her when she talked about the other joints that hurt. )
So she goes through the nerve conduction test and they schedule the follow up three weeks out - this morning. I had been gearing up to do battle with the doc for three weeks since he was so disparaging of my theories while my husband was there.
So they called this morning to cancel. The doctor we had been scheduled for has had a family emergency. Our regular doctor? The army has moved him away. They wanted us to schedule an appointment several more weeks out.
So we went in anyway and I just refused to take no for an answer. They tried every subtle technique (the "we outnumber you", the "there's nothing we can do", and the "those are the rules" ones) It was when they realized I was prepared to roam the halls until I found someone highly ranked enough to tell me why we weren't interested in helping my kid that they took us to a room. (I used the "I'm taller than you" and the "drop you voice deeper trick" to exude more authority.)
So I have a referral for her. That's all I was hoping for anyway today. The big question is whether they will let us see my rheumy who is 350 miles away or if they will make her go to Seattle for a pediatric rheumatologist - 2200 miles away...
I am currently in a similar boat with the Psychiatric office. I went to the ER to be seen for depression/anxiety and was given meds. Because it's an ER, they will ONLY provide enough meds for 60 days. The soonest appt. I can get in to see the Psychiatrist at the local office???.... 3-4 MONTHS!
So, now I'm on meds that will just start kicking in by the time I run out. I call the office every day to harass them about any cancellations and/or earlier appt availability. No luck so far :(
Good luck!
I don't have those issues. My GP is part of a medical group of 20+ GPs, a dozen specialists and two centers. They have walk in services that we use a lot. Granted there's no rheumy and if I get into a spat with them there's no other docs in town.... So I drive two counties over for a rheumy and play nice with the medical group. I can always drive 40 miles to Nashville - lots of docs there to choose from. That's where I'll have to go to find new Allergist. Local one is a crackpot.
There's good and bad out there. Unfortunately as insurance/medicare reimburse less - there will be fewer doctors accepting new patients. And even fewer GPs.
As for the larger question, there are offices around that would be much happier if an actual flesh & blood patient never darkened their doorway. They'd rather we just sent the money and stayed home.
(Of course, we have to eat the one GF option since we've discovered that wheat gluten is a big trigger for both of us)
It's ridiculous to send someone that far away if there is a closer, good alternative. Can yours pull strings to get her in with the other guy?
your brother's quote sounds like something that Leona Helmsley of the there are "little people" and then there is myself, ilk.
i just try to think what it is like to work on that side of the counter Sally (the admin side) and that there are a LOT of folks that want access.
Also some folks like to think of the long term ramifications of co-existing with a group of people that you will be getting services from for a long long time in terms of alienating people with certain behavioral demands and responses.
I don't mean speaking up for one self, I mean claiming privilege.
Not dis-respecting Fiery's great skills to get the fastest closest appointment for her daughter. My daughter grew up encased in a boston torso brace so I remember advocacy, and I still do for my kids and I love your story Fiery and your advocacy.
I don't mind waiting my turn in a line. Some (not all) lines are for people who accept all as equal.
But some lines are meant for jumping over in cases of emergency or incompetency..
But every case of what I want can't be considered a fire otherwise no one will ever jump when I have a true fire :)
I trust process until it violates my sense of what is right (like with Fiery above) but I am not a princess or prince in terms of not being able to wait my turn along with all the good people that have the same similar situation for example.
what some people think are apathy and inertia are someone's cup of bohemian tea.
we all get there just in different ways.
Ros
we have to be our own advocates. that usually means making repeated phone calls, showing up even when you're told 'no', and doing some waiting. i've had to do it more times than i care to count, but i've been pretty successful getting the care i needed.
I was meek and a "good patient" while trying to figure out what was wrong with me. I am hoping I learned from it to do a better job for my kid.
My husband had taken her to the first two ER room visits where they prescribed nothing that we couldn't get over the counter and nothing touched how bad she was hurting.
I went in the third time and explained the entire process. I also told the guy very conversationally that I wasn't leaving until they abated her pain. They could discharge us, but we'd drive around the block and check right back in.
I find it inordinately sad that things have come to this in medical care. In the rest of my life, I am seen as patient and understanding. I work with middle schoolers, for goodness sake!
Hope you get some answers soon!
Ros, I had to look up what a boston brace was. That looks like it had to have been horribly uncomfortable for her.
sherrie
you go for it full speed! when I was talking about bohemian patience I meant everyday non emergency non urgent non medical stuff for our little ones and ourselves. I am keeping thoughts for your journey, let us know.
Sherrie
that was a sweet comment, yeah she had a HUGE curve and if it was not halted while she was malleable (pre menustration for girls) it may have necessitated rod surgery later. so she was compliant.; it is a brace that extends below breast to pubic area and you can not turn in it. you can't jump or ski or anything off the ground as you could break your neck in it since you can't rotate in it. she wore it 24/7 , including sleeping, for five years. I was a roaring bear with everyone I needed to. from her skin issues from it (dermatology) to her pain (Ortho) to the brace (orthotist) to the primary to the school nurse (how to hide a brace one hour a week for gym class so other's can not see it) and she hurt the whole time. both the scoliosis hurt and the brace hurt. we did a lot of liquid motrin. she doesn't like swallowing pills also :). the first brace was sooooo tiny. she like grew up in it.
Fiery another thing i tried to do was lessen her pain in other areas (like orthodontia and dental, or you name it) - I felt that what your daughter is going through and what my daughter was going through was like enough. I remember when the dentist insisted that some hurtful dental appliance stay in longer for her, though necessary I said no., the damn scoliosis was enough and so was the body brace. Kids need an advocate.
she's a strong young woman today though and your daughter will be also.
hugs to all
Ros