Omg pain!!!

[Birdie]

My GP who is on maternity leave.

You're no dummy, you can find a different doctor or use an urgent care facility. It might take hours calling doctors offices. Do it or go to the ER and get demanding.

My desperation is growing by the moment.

There is no excuse for it. Have you been to a doctor in the last several weeks?

PM me your address and I will find an urgent care facility near you, or you get a family member to find it, ask a neighbor for help. There is one unless you're in a small town. They go out of their way to make themselves available and easy to find. This is what they do. They help people who need help.

If you're out of food do you hesitate to go to the grocery store? Nope. That's because that's what they do, provide groceries to people who need them. Car broke? Auto shop. Pain and suffering? Doctor.

Doctors, hospitals, urgent care, they all need you, if you don't support them they'll be out of a job. Who's gonna feed their families? DO IT NOW. You've been this way for a long time.

Some of what you post makes all of us worry that you might be suffering more than pain and discomfort, which on it's own is more than enough to need medical attention. There might be internal damage taking place from the things you tell us. If that weren't true we wouldn't keep telling you to go to the ER.

[MikeG-2012]

I don't remember if I updated this thread or not. I emailed my rheumy almost begging for pain meds. I can't sleep at night and it's really started to affect me. She wrote back that, if it's fibromyalgia, I can't take narcotics so ... she's going to wait. Unfortunately, she said if its not fibro ... then I need to ask my GP for narcotic medication.
My GP who is on maternity leave.

It is time to do something drastic, because drastic times call for drastic measures, right?

It is finally time to TAKE CARE OF YOURSELF AND FIND A NEW HEALTHCARE TEAM!!!

Not tomorrow, not next week, NOW!

Any doc that passes off symptoms from a WEGENERS PATIENTand passes it off to another is a hack, and should be left like you'd leave the old magazine in your waiting room.

FIND A VASCULITIS CENTER, call someone that can get you there and GO to the ER at that facility and tell them that you are in a flare up and that your regular docs won't do anything for you.

There are great docs out there, and it sounds like yours are not those people!!!!

I'm going to stop screaming at my monitor and also stop ranting now, and you won't hear it from me like this again. We all want you to be well Nikki!

You need to take charge of your health, because no one else will do it for you!

[annekat]

Hey, that makes me wonder, what if you just took a trip to San Francisco and went to the ER there at the UCSF hospital where specialist Dr. Chung is located? They'd have to treat you, and might even admit you. Then Dr. Chung might get involved in your care very quickly! Of course I'm sort of fantasizing, because I don't know if your current HMO, Kaiser, would pay for this. I just think it is crappy that you are limited to this one HMO that is not giving you the care you deserve. As for docs passing you off on each other, I've been there, and it sucks. But any doc can prescribe anything, and if one of them is on vacation, you should be able to badger the other one into prescribing you what you need! Where's that badger picture that Mike or someone posted not long ago?

[Jaha]

Nikki,
When you go to the ER you are seeking treatment whether it is for Fibro or for a Wegs flare. They would probably do so labs and such, maybe so scans, but they would be looking for the reason for all the pain. It has been my experience whether they find something or not they will do as many tests as they can. If it is a flare, your Sed rate will be elevated and your chest x-ray may not look so hot. If that is so then it is a flair, which you need probably IV Preds and also pain management and hooked up with a good specialist. If it is fibro, then you need pain management and possibly anti-inflammation drugs. So it is a win, win situation, if you would just go. I forgot to say also, wear a mask so you don't contract anything worse in the ER, it also gets their attention to your immune suppressed disease.

[Birdie]

Where's that badger picture that Mike or someone posted not long ago?

Badger picture?
Do you mean this one?

profilepic.jpg

Could substitute any of our avatars, we've all been badgers. Go already Nikki. A bunch of people here are wishing you would get help. I can't figure out why you haven't done it. Oh, BTW... I won't accept any excuses I've already heard. And, uhm, I can't think of any valid excuses.

[annekat]

Badger picture?
Do you mean this one?

profilepic.jpg

Could substitute any of our avatars, we've all been badgers. Go already Nikki. A bunch of people here are wishing you would get help. I can't figure out why you haven't done it. Oh, BTW... I won't accept any excuses I've already heard. And, uhm, I can't think of any valid excuses.

Yes, I think that pic works just fine, Gary. How could anyone say no to a face like that?

[Birdie]

Yes, I think that pic works just fine, Gary. How could anyone say no to a face like that?

The face is Andy, he's only 15 years old but smart enough to agree with us on this issue.

Here's his personal web page:

http://www.garyrin.com/birds/andy/Andy.html

[annekat]

The face is Andy, he's only 15 years old but smart enough to agree with us on this issue.

Here's his personal web page:

Andy Bird Main Page

Enjoyed the bird pages. Added this to my "fun stuff" file on the old Mac.

[drz]

When I was new into my treatment but doing well enough to finally be out of ICU and doing rehab in a nursing home closer to home I often went to their ER down the hall. The doctors there readily admitted they had no experience in treating Wegs but they listen to my concerns, did the tests I suggested, addressed my concerns and followed the recommendations of my treating doctor who ordered my labs regularly and prescribed my meds for Wegs according to the labs and how I felt from my self report and the nurses notes. The local docs gave me regular transfusions, IV antibiotics, oral antibiotics and other treatment which they ordered in consultation with me and my treating doctor two hundred miles away. I later had similar experiences in other ER rooms and walk in clinics with many doctors who admitted to having little experience with treating Wegs, but were willing to do the best for me they could.

The worst were the arrogant ones who knew nothing about treating Wegs but thought they did not need too to help me. I learned to ignore their advice and seek help from someone who was more responsive to my needs. My assigned doctor in the nursing home from the community was no help at all so I had to work around him. One time he discounted my symptoms and concerns so the next day I went to an ENT doctor I knew in another town near by who reported my symptoms and concerns to my treating doctor and i was enroute the next morning by ambulance to his hospital 200 miles away. I was having trouble swallowing and my throat felt swollen inside but it turned out to be GERD flare caused by reduction in my Protonix by mistake up and not Wegs.

One time one ER doctor blew me off, maybe late for some appointment elsewhere or something, so i complained to the nurses when I got back to my ward and he must have got some feed back about it cause he seemed to try be really nice the next time i had to see him.

Not all doctors are helpful every time you see them. Some are great most of the time, some seem very bad and dangerous to your health most of the time, so you need to persist and shop around till you find ones you feel comfortable trusting with your health care. You don't need to agree with or accept recommendations that feel wrong to you cause doctors often make mistakes and it is your body and your health. Not theirs! you have to take responsibility for your health cause you will be the one living with the results.

[Birdie]

The doctors there readily admitted they had no experience in treating Wegs

I had several ER doctors who were honest enough to say they had never heard of Wegeners.