I give up.

[squeepig]

It's been a year.

8 joint ultrasounds that were negative.
1 hand xray that was negative.
1 CT scan showing bilateral bursitis in the hip.

Pain 24/7 in finger, wrists, elbows, back, ribs, both hips, knee, neck. Nail pitting. Psoriasis on scalp, back, legs, elbows and other locations.

No treatment other than anti-inflammatories offered by the rheumatologist who refuses to treat me until he sees damage.

Rheumatologist now calls and says he can no longer see patients.

Dermatologist says he can't give me biologics...I have to get them through the rheumatologist.

Can't even walk down the block to get lunch. Bought a cane on my own so that I can get to my car.

I live in a rural location and there are no other local rheumatologists.

I give up. I am tired of using all my vacation time for doctor's visits that aren't productive. I am tired of my work complaining about my time off and how low my vacation balance is.

[RichJ]

hi squeepig,
im so sorry to here that you feel that way. i wish i knew what to say that will help. i have been down that raod a couple of time's. it's not a fun way to feel. i beleive in this will always get better. it just might take time.

please try and have a good night. i know it can be very hard

richard

[Malibu 2]

It's been a year.

8 joint ultrasounds that were negative.
1 hand xray that was negative.
1 CT scan showing bilateral bursitis in the hip.

Pain 24/7 in finger, wrists, elbows, back, ribs, both hips, knee, neck. Nail pitting. Psoriasis on scalp, back, legs, elbows and other locations.

No treatment other than anti-inflammatories offered by the rheumatologist who refuses to treat me until he sees damage.

Rheumatologist now calls and says he can no longer see patients.

Dermatologist says he can't give me biologics...I have to get them through the rheumatologist.

Can't even walk down the block to get lunch. Bought a cane on my own so that I can get to my car.

I live in a rural location and there are no other local rheumatologists.

I give up. I am tired of using all my vacation time for doctor's visits that aren't productive. I am tired of my work complaining about my time off and how low my vacation balance is.

Oh Squeepig I am so sorry your miserable.

I don't know where you live, but how far to another Rhuemy? I know it could take an hour or hours to get to a new one, but it might be worth it, in fact I'm sure it would be worth it. If you can not relocate then that's what I would recommend. Do the drive or have someone take you, tell them over the phone that it's a long trip so you need to do whatever bloodwork by your house and have it transfered. Don't take NO for an answer, you can NOT continue to live in this pain and we have access to some great medications. you need to find a dr. that will listen to you.

DON'T give up!!! Do NOT give up!! Ok we are all here for you!
Malibu

[Ihurt]

Your previous Rheumy should be reported!

If you have signs of pain all over as you describe, bursitis in the hips, with a strong history of P, AND nail pitting?????.....he should have diagnosed and treated you with more than just NSAIDS. Or is it that he thinks you are a DURG SEEKING pateint?

You MUST, you absolutely must get to another Rheumy, even if you have to have someone come and take you! You need meds and you need to be treated and treated with respect...NOT PATIENT DUMPED.

I would call your state Board of Medical Examiners and let them know what happened. He did what is called 'patient dumping". He is supposed to give you the names of other docs if he cannot treat you!

If I were a betting woman I'd say he already has a problem with his license to call and say "he can no longer treat patients"., but I know first hand that even in that case...he has to come up with a name or names of other people he is referring his patients to!!!!!

Where do you live? Maybe we can do some research for you. Mike K should be along with some links, but we need to know your state.

In the meantime, stay warm, use a heating pad for those hips, make a rice sock (long tube sock with white rice-tie a knot in the end of the sock). Microwave it for 2-3 mins and use it, use as many as you need.

YOU CANNOT GIVE UP just because you were being reated unfairly...I know it's hard, been there myself, but this is your life and body...your the ones usffering the consequences, they aren't.

I hope you feel better really soon! We are here for you. We do care!

Hugs
Elaine

[pgerpup]

Squeepig!

I'm so sorry you are feeling bad! I hope you can find another doc to take care of you. You need to find someone who knows how to treat people with PA. Don't give up! You have to search for someone else to take care of you.

Please take good care of yourself! You are the only one you can rely on.

Love you!
Fay

[AnnieB]

That rheumy sounds like a dead end. You need to find another rheumy. Maybe you can find one who will talk to you on the phone before you make a long trip. That way you can see if s/he is open to biologics for you. My rheumy said it was important to start Humira before I get permanent damage. So I can assure you that some rhuemies prescribe biologics before damage is shown and that some insurance approves it.

I don't know much about trials. Does anyone here know if you have to work with a local doctor to get to participate? That might be one option.

Also, the pharma companies have info lines. They might actually be able to recommend a way to find a doctor who will work with you. Worth a try!

[deemah]

squeepig,

I am so sorry that you cannot get the help you so desperately need. I am so angry with your rheumy and derm. Sounds like they don't care about their patients one bit. Don't give up. Hang in there and keep searching for a doc that will listen to you and give you the meds you need.

Wishing you the best of luck.
Ruth

[squeepig]

Thanks, everyone. I've already maxed out my vacation time at work going to doctors, and my work won't give me anymore time off, saying it's not fair to the other employees if they give me time off without vacation pay. So even if I find a rheumatologist, I can't get time off to go to one.

I live in WA, in a town of 700 people. The closest town doesn't have any rheumatologists. From my house, Seattle is about 2 hours away. I can see it across the water, shining at me, like it has all my answers, yet is unreachable.

Why can't there be any doctors who see patients on Saturdays??

I really can't understand the "no treatment unless damage" philosophy, either.

I'm just so tired of the run-around. :(

[docmks]

Hi Squeeg,

You hang in there! Send me a pm and we can talk turkey about docs in Seattle. i have a rheumatology practice that I like very much. I see a nurse practitioner but I also see the rheumy. They are extremely compassionate. I am so sorry that you've used up your vacation time and that you are having to work when you are in such misery. This is a dreadful disease that we have.

Where is the nearest doc in the box? I am in a small town too, so my only option would be to go up island to the ER if I was in trouble on a weekend (or I could go to a Seattle hospital). What is the nearest larger community to you? Even if you can just connect with a compassionate doctor over the weekend, through an ER or a doc in the box, you might be able to find some help for now. SOme of those drive in docs are very good at acute pain because they deal with lots of injuries.

Let me know if I can help. I also have the name of a good derm practice in Seattle. I need to call them myself.

Take care! Hang in there!
MK

[Malibu 2]

Thanks, everyone. I've already maxed out my vacation time at work going to doctors, and my work won't give me anymore time off, saying it's not fair to the other employees if they give me time off without vacation pay. So even if I find a rheumatologist, I can't get time off to go to one.

I live in WA, in a town of 700 people. The closest town doesn't have any rheumatologists. From my house, Seattle is about 2 hours away. I can see it across the water, shining at me, like it has all my answers, yet is unreachable.

Why can't there be any doctors who see patients on Saturdays??

I really can't understand the "no treatment unless damage" philosophy, either.

I'm just so tired of the run-around. :(

I read somewhere on one of the links that they went to their Human Resource manager and they were able to file some form along with a doctors note that allowed them to take the time they needed for medical reasons. I would recommend that you check into that. They can not fire you because of your illness but lack of work without reason might be a cause for termination. Check your rights with human resource a.s.a.p!
Let us know how it goes!

[evergreen]

squeepig,

find that good/compassionate rheumy in seattle and schedule an appt. if it's anything like the docs around here, you will have earned the time off by the date of the appt. check into the family medical leave policy at your workplace if necessary...I think I saw somewhere that P is considered a disability if that helps.

I was in a similar situation until I got connected to a good (also the only) rheumy in town.

take care
~evergreen

[nyoki]

You'll want to get a "Medical Leave of Absence" form from HR. They are required to let you have time off for medical purposes. They may not be required to pay you, but they certainly can't fire you for it either. Just mention the phrase "wrongful termination" and see what they say then. The Federal gov't has some strict rules for employers where this is concerned. Also check in to SSI and see what you may be eligible for.

Good luck and do whatever you have to in order to get the help you need and deserve.






Blaidd Drwg

[Ihurt]

http://www.dol.gov/esa/whd/fmla/

This law allows for you to take time off UNPAID if you are sick WITHOUT LOSING YOUR JOB.

Please find a Rheumy even if you have to make that drive.

Continuing the way you are will most probably lead to disability without tx. Wouldn't it be better to take time off to GET BETTER then return to your job, INSTEAD OF struggling through every minute of every day as if you have 2 45lb weights in each pocket and a knife under both feet?

Elaine

[squeepig]

Wouldn't it be better to take time off to GET BETTER then return to your job, INSTEAD OF struggling through every minute of every day as if you have 2 45lb weights in each pocket and a knife under both feet?


Have you been filming me? :)

[Ihurt]

Have you been filming me? :)


I can't walk that far :) I just know how it is! And I care!!!!!

[jdeldrid]

Sqeepig, I'm sorry you're having such a hard time. I have an excellent, very agressive, Rheumatologist in Everett -- not sure if that's even an option for you. How many employees does your employer have, overall? If there are more than 50 people, total, your employer has to allow you 12 weeks/year under FMLA. It's usually not paid, but it would allow you to continue to seek the care you need.

[jad030]

Good morning all.

I grew up in a small town and the only way I was ever able to find a good specialist for anything was to either go to the ER or call the ER. They have a list of specialists on staff, sometimes they are a bit of a drive, yes, but its not usually too far. They have to make the drive several times a week to the hospital when they are on call, and every hospital has a rheumatologist on staff or on call.

You may want to call the closest hospital to you because the closest rheumatologist may be in a place you never thought they would be, and sometimes they are hard to find because they dont advertise.

Good luck. Please let us all know if we can help. We are all in the same boat, and we will be damned if we let that boat sink!!

Happy Thanksgiving to all!!