PCP and I created Plan C

[Guest guest]

Hi Everyone,

Sorry I haven't been able to participate much. I have continued to get worse and

worse. I'm down to the point where I am almost completely dependent on my

Wheelchair and Service Dog. Right now If I didn't have my Service Dog I don't

know what I would do during the day when my parents are at work.

Anyway I wanted to update you on what is happening since my Rheumy's at the U of

M gave up on me. First of all I want to say that I did try to switch doctors at

the U of M and they would not let me. Don;t know why. I have a friend who as a

different Rheumatologic disease that has been through at least 4 doctors at the

U of M and 6 at The Cleveland Clinic. They allowed her to switch, but I

couldn't?????

Anyway I met with my PCP today. First of all the Rheumy's I saw on April 9th

have not sent my PCP their notes like they are supposed to do. When My PCP did

not receive the Notes, She requested them. Yet She has still not received them.

My PCP is very upset at the Doctors at the U of M. My Brother is writing a

letter to the head of the Rheumatology Department telling him that 2 of his

doctors need to learn to be more professional and compassionate when dealing

with patients. If I would not have had my Friends and Family to rally around me

and help to want to keep fighting I would have given up after that appointment.

Anyway continuing with what happened at my PCP appointment. My Dad had suggested

to me, when I was in my funk and couldn't think about what I should do next,

that maybe I should have my PCP contact Dr. Mohan and do a Phone Consult. Dr.

Mohan was a fellow at the University of Michigan when she worked with me and she

is the one that diagnosed me with Still's and

kept on me to not give up. The reason I did not follow her when she finished

her Fellowship and went into Private Practice in Lansing, MI is because of

Insurance. My PCP thought this was a great idea. She was worried about insurance

if Dr. Mohan wanted to see me, My parents and I have decided that we will figure

out a way to pay her Doctor Bills if she can help me. My Church, the FFA group I

was in, and many others have been wanting to hold fundraiser's to help pay

bills. We have kept telling them that we are ok, and we have been. If we have to

start paying doctor bills out of pocket then we will ask for help from the

Community. I must say that I almost cried when my former Ag teacher asked if

they could do a fundraiser for me. I knew my church would find a way to help,

but I never expected my high school to rally around me.

My PCP and I discussed my Hysterectomy and the fact that I don;t sleep unless my

medication knocks me out. When it does knock me out I sleep well and I feel

refreshed and am better able to handle what I am going through. When I get some

decent sleep I don't need the extra Percocet on top of the Fentynal Patches. I

use Xanax to treat my " Stress " attacks or " Panic " Attacks which ever you want to

call them. Xanax and Ambien are in the same family. Since Xanax puts me to sleep

my PCP told me to just take one at night before bed. She does not want to add

another medication to my list if she can help it and I agree with her. If I can

count on some constant sleep she and I agreed that I can then schedule my

Hysterectomy. She did agree with me that I should wait until the first of June

when my mom can be home with me full time during the recovery. My mom is a

teacher and has summer's off, except for a few days and those are flexible and

she can schedule them later in the summer. I

see my OBGYN on May 6th for my Annual Pap smear and exam. I have a few more

questions to ask her regarding the Hysterectomy.

I want to say a BIG THANK YOU to those of you who responded back about the

Recovery from the Hysterectomy and with Doctor and Rheumatology Clinics to go

to. you are an inspiration to me that I can get through this and learn to

live and deal with Still's (or whatever it is I have). I still can't imagine

living with this for 30 years like you have done Mel. Thank you. I may need

those doctor's names yet. My PCP says she would rather go with a specialist who

knows me and saw me within the first year of this disease. She (Refering to my

PCP) said that she doesn't know how she would describe what has happened to me

to someone who has never met me and seen me. She said most specialist would

probably think she was nuts and that she was making all of my problems up if she

tried talking to them on the phone about me.

I also want to say Thank You to this group for helping to lift me back up and

helping find the will to keep fighting. I don't know what I would do if I didn't

have this group to turn to. To everyone who is battling Flares, doctors,

Insurance, or SSI Hang in there and I will be praying that we all see Pain Free

Days soon.

Take Care Everyone!

Fayette, OH

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