Just really really down lately. Still can't find treatment or a doctor even after switching insurance and the regular MD I picked off the insurance list was a total bomb. I new it wouldn't get me a diagnosis of Bart or anything but it was probably the worst office I've been to yet. disorganized and ineffectual.
Couldn't even get in to see the doc but a PA instead who wouldn't refill my pain killers only refer me to a pain clinic (although she hadnt the foggiest where that was cause only the lady that processes the referrals knows that) but that lady says I can't get a referral till I see the actual dr. Not that I had known my new patient eval would be with a pa. They schedule me another appointment for the dr so i could get a referral so i could go to a pain clinic so i could get my pain pills refilled.... however the idiot front desk again set the appointment up with a PA because the dr was out all week!
Now Im about out of meds so by the time I see the actual dr (supposedly tues) just so she can say "you have fibro sorry nothing we can do go see the pain clinic" wait for a referral to be mailed to us since they cant just hand it across the desk mind you and then call and make an appointment with the pain clinic which may or may not prescribe pain killers anyways.
Oh and since they have been my only effective (when they are) treatment for about 2-3 yrs now my body is dependant (I am soooo not addicted however no matter what the medical community believes of 25yr olds and how if we take any drug it must be for fun) so Im going to be writhing in even more pain. Not that I am not already since Im so low on the drugs Im refusing to let myself take more than one at a time which means I can only really effectively dampen my pain from the "im going to kill myself" point to the "God can I please just go to sleep for a week or two" point for about 4 hours.
I'm just having such a friggen hard time the last to weeks and I dunno what to do. I have no friends and no real family around (in-laws who are as different from me as fire is from ice-cubes so they really have no idea how to comfort me... if they even know what the word comfort is but thats a diff story... sort of) they all live other side of the country and have too many problems of their own for me to bother them with really, though ive still done that many times these past two weeks.
And my beloved husband tries hard but he might be an orange that fell from an apple tree he still hit the ground too close sometimes. He doesn't really "get" what Im going through or just how bad it is and even when I explain it the relevations really only last an hour or two till he has to go to work or falls asleep or something and then I'm left alone again.
I'm just kinda at wits end and dunno what else to do anymore. The pain is killing me sometimes I think literally...
sorry if i didnt make this spaced out enough or in the wrong place just needed to get it all out there and maybe in front of people who understand like im sure you guys do.
Posted by Peedie (Member # 15355) on :
Hi Zoeyini I'll share with you what little I know about this disease.
If you continue to persue the avenue to get help through your insurance and the doctors they offer - you will reach a dead end.
They don't have to help you, they don't want to get involved in something they don't know how
to treat and they can rely on the CDC Treatment Guidelines to support that.
You need to go to "seeking a Doctor" here and find a LLMD.
These doctors know how to treat this disease and are dedicated to do so.
It will be an out of pocket expense so if you need to collect funds from family and friends - do so.
But know that your office visit will probably be once a month or if you are doing well - maybe every six-eight weeks.
Make a list of your most bothersome symptoms and if you are in financial hardship let
the LLMD know right off what you can and can't afford because testing can be expensive.
Most LLMDs will work with you and based on your symptoms will Rx
to cover suspected co-infections until they can be confirmed through testing.
Treatment is a whole different world when you are in the right hands - get there!
The pain and depression and desire to sleep through life is all this disease!!!!!
It is part of the symptoms list and we all experience this.
It will get better with the proper treatment.
Take your husband with you to your first LLMD appointment so he will better understand what you are going through and be able to ask questions.
This will make a huge difference.
He can be of big help and a source of support and remember best what the doctor said as our Lyme brains are not working 100% of the time.
You probably have an unhealthy dependence on pain killers.
You don't mention Antibiotics at all in your post - so I assume you are not actually in treatment.
You need to address the "Pain Casscade" with your doctor.
He/she will help you break the pain cycle. Work on getting your body healthy.
Eat right and take vitamins so you will better handle the Abx treatment and the die off toxicity load.
Things will get better but you have to help yourself and find a LLMD fast. Good Luck -p
-edit to space out - so sorry, I forgot.
[ 23. November 2008, 02:26 PM: Message edited by: Peedie ]
Posted by desertcanyon (Member # 17998) on :
Zoey,
I'm so sorry to hear that you are going through all of this. Just know that you are *not* alone.
I went through something similar with doctors when I had to pick out a primary care physician and try to get referrals through him.
It was very time-consuming and frustrating, and when I was finally able to get in to see an Infectious Disease specialist, I just got the run-around again.
Peedie is right. You've got to find an LLMD. I know you've posted for LLMDs before -- are *any* of them on your insurance plan? If so, try to get your primary care physician to give you a referral to that specific doctor.
If none of the LLMDs are on your insurance plan, is there any way you can scrounge up the money to go see an LLMD even for just the first visit, just to get you started? Don't waste time going to random doctors with a shotgun approach.
In the meantime, you've got to do something for the pain. ER visits are usually covered under insurance -- maybe you can get some pain meds and sleep meds that way? I would say that the pain you are in definitely constitutes an emergency!
Or, maybe you can go to a walk-in urgent care clinic? Just do *something* to alleviate your pain so you can sleep and think more clearly.
As for helping your husband to better understand what you are going through, have you ordered the DVD "Under Our Skin"? Maybe that would help. See: Under Our Skin
Hang in there.
I'll be praying for you.
Posted by aklnwlf (Member # 5960) on :
Hi,
I had trouble reading the first 2 posts because of spacing but I read that you have pain.
I've been on pain meds since 2001.
What I would suggest is to go to a walk-in clinic and get meds there.
I never thought I'd say this but lie if you have too.
I can relate to the spacing out your meds cause I do the same thing.
I try to suck it up during the day and take most of mine in the evening to help me sleep.
I've tried many things for pain relieve like hot epsom salt baths, heat and ice, topical analgesic creams, infrared light and a tens unit.
If you have access to any of those they help for joint pain.
I take Vicodin 5/500 mg, Soma 350 mg, and Zanaflex 4 mg for pain management and this combo works sufficiently enough for me.
Good luck!
Posted by bettyg (Member # 6147) on :
zoey,
so sorry to read about your constant pain and you've been on pain pills 2-3 yrs.
what a crock not able to get to see llmd; vs pa.
i couldn't read peadie's post at all. i can't think right now; time for BED!
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