Update

[Guest guest]

Hi Everyone,Here is my email that I just sent to my Support Group about the day I had today...

----------------------------------------------------------------------------

I am sorry I am just not in a good mood at all right now. I don't even want to talk to anyone. Please don't take that personally. I am just pissed at the world right now. I just got home. Went to the Rheumy today to see what he would say after my visit with the Neurologist last week. He understood that my Neurologist didn't approve of their way of doing Nerve Conduction Studies. So now we are back to saying, "I don't know what to do with you."

I told him that she felt that my leg pain, tingling, numbness, coldness, etc. was more of a "Vascular" issue. She thought it could be something of a "Systemic Nature."He looked at me and said it wasn't. I tried to ask him questions about her Summary, because his Nurse gave me a copy of the fax today. I had the Neurologists office fax to them this morning so he would have it when I got there at 1:30 today. He just said, "Don't worry about any of that, I am not concerned with that." I was just sitting there, like, "Oh my God, what an ass!"

My blood pressure was 146/101 when his nurse took it, and I had been sitting down for a little while by then and you know he didn't even address that?!?! I will be talking to my GP about it in the morning though. He told me the last time I saw him a few weeks ago that if it continued to get high he would put me on something for it.

Anyways, the Rheumatologist told me he wanted me to get "wound care." He wrote me a script for "wound care" at some place with a hyperbaric chamber or something. I heard him telling the nurse. She gave me 2 numbers to call. He also said he backed what the Neurologist said about a referral to The Mayo Clinic when I asked him about that. He said that he did think I would benefit from that. I am sure he would love for me to go there so he could get rid of me for once and for all.He even said he would write a referral as well. He is now saying to me when I asked him why my legs are so cold, feet and ankles swelling, etc, that he doesn't feel its "Vascular" related and he now "thinks" it's related to my FIBRO!!!!!!!!!!! God, what an ass!! He goes from one thing to the next when the damn Pathology Report is telling him what it is!! In 1997, it said, Erythema Induratum CHRONIC, when I had another one done just this past Dec 21st, it said, "Nodular Vasculitis, Erythema Induratum, etc., the same thing. He doesn't think it's Churg-Strauss or Wegener's Granulomatosis. Which by the way on 2/13/06, he told me, "I don't see any lab results for the Eosiniophils in here." Isn't that one of the tests they need to diagnose those diseases?? For him to say this isn't a vascular problem is WRONG. Since when does Fibro do something like this to a 40 yr old womans legs??!?!?!?! I have had FMS since 1992, and never have I ever gone through something like this from FMS. He's whacked as far as I am concerned. He didn't say ANYTHING about me coming back after wound care either, and frankly I am glad, because I am NOT going back to see him ever again. I want a NEW Dr. When I told him how confused I was about everything, and how difficult it was being sent to so many different Dr.'s when they are all saying see the Rheumatologist and he is saying to me, "well go back to the Derm Dr. that did the biopsy," which by the way, I only saw him 2 times for the biopsy and then for a skin reaction from Lasix, Potassium and Doxycycline) while he skated around my questions, he made a crass remark. I asked him why I was being sent to this Dr. and that Dr. and he said, "Don't you ever wonder WHY you're being sent all over the place?" He said, "Because you have so many issues and things going on, and no one knows what to do with you." He made me feel like it was something I had done or said wrong. It was just the way he said it, and you could tell he was trying to be careful with his words. I was pissed!!! I have never been treated like this by ANYONE in my life. I think he is challenged by a patient that goes into his office having "knowledge" of their illnesses. I mean my God, after all these years, and being diagnosed with all of the things I have, you don't think someone is going to get online and research as much as they can about the illnesses they have??? Geesh! I bet if it were them in my shoes, they would be doing the same thing. I am not the kind of patient that will go in there quoting things or saying things either. I may ask a question about something I read, wanting to know more, but never would I say something a Dr. would say, you know what I mean?I left his office and called my GP immediately. I have a CONSULT appointment set up with him at 9:30 in the morning. I am going to have a VERY long talk with him about everything. I am going to tell you now, the way I am feeling and hurting over all of this, there are going to be some big tears falling down my face tomorrow. I am just at the end of my rope over all of this.The hell with this Rheumatologist. He even said again, "he didn't understand why my Dermatologist guy that I was referred to couldn't do "wound care?" I told him, "because they all Dermatologist, GP, Neurologist) keep telling me I need to see a Rheumatologist!" What are they going to do? This is not what they specialize in! I am so damn mad that my old Rheumatologist Dr. wouldn't see me. He was never afraid of a challenge and was always willing to try a treatment. I was on Plaquenil with this before and did just fine, but this idiot told me on my 2/13/06 visit that he didn't feel it necessary to start me on anything and he didn't agree with the ones they had used in the past. I bet he never even consulted with my old Dr. about any of this!I did some research a few nights ago on these research hospitals. & White won't take Medicare, and that was the one I had hoped to go to because it's right here in Temple, Tx. not too far from me. The Mayo Clinics accept Medicare, but not Medicaid from Texas. The Mayo in Minnesota has the best Vascular team it seems to me by looking at their site and my needs. I looked at the different types of things they did there and compared it to my illnesses and they seem to be the best facility out of the three they have. They have one in ville, FL and another one in Arizona. They take Medicaid ONLY in certain states, but not mine, which FIGURES, ugh! I KNOW I can't afford the other 20% or whatever in medical bills and I will NEVER go back to being in debt again due to medical bills. I have good credit and I owe nothing to anyone. Plus, they want a deposit for the amount that is not covered anyways, so I am not too sure this is going to work out either like I had hoped. At this point, honestly? I really don't care.So, I think I will just go on living my life the way I have been, in pure misery and hell, because nothing is going to change this, NOTHING but God at this point. I am tired, I am so tired of all the BS, the red tape, all the tests, the Dr. visits, the whole damned thing.

I also had it out with my brother a few nights ago, he had called me about something unrelated and he had asked me what I was doing, and I told him I was researching these hospitals, and he said, "Why?" I said, "Well, I guess you haven't talked to Mom lately?" He said, "No." I told him what all was going on, the whole 9 yards, and he went off on me about how I was "chasing after answers and that there were'nt any cures for what I had, and I just needed to deal with it." He had NEVER told me that before, and he has NEVER treated me like that before either. Who knows, he could have been mad at his girlfriend that night. He called me a "f***ing moron" when I was TRYING to tell him about this Rheumatologist. He wouldn't listen to anything I had to say and just kept getting louder and louder. I hung up on him after he called me a f***ing moron. He called right back and I let the answering machine pick it up. He continued on with his thinking of how dumb I was and his whole righteous opinion. I ended up calling my mother at 9:30 at night, woke her up, she wasn't mad or anything at me, but she was furious at my brother for what he said. She said, "he had NO right to say that to you, and I am going to talk to him tomorrow." I told her, "No, don't even tell him I called you, that will just piss him off even more." So she said she wouldn't. She and my sister are the only one's I have really been able to talk to and cry to about all of this.Well, I am going to end this for now. I won't be around much for awhile. I am just too overwhelmed by everything and I just want to be alone. I am sorry, I just can't handle anything else right now as far as emails and other things. It's just too much for me right now.I really want to thank you guys, and I REALLY appreciate all of your love and support, and especially your understanding. I will be back soon when I have dealt with all of this emotional upset.

Hugs,Lorrie Anne