Tuesday, May 26, 2009


Still no word from the PCP.
Now I am getting shut-off notices from the electric company because he clearly did not send the fax that I practically wrote for him and brought to him several times and confirmed with him, several times, in person, with witnesses, that he has in fact, sent the information to them.
(The information being that I am chronically ill and need my electricity no matter what.)

Last Saturday morning, very early, I got a big black line in my left eye. It then turned into two, and then into two lines of dots. I was alone and scared out of my mind. I wound up having to take a taxi to the appropriate medical facility, and after 4 hours or so of pretty much sitting there and choking on my own tears (literally) I was told that there was a lot of blood and that it is because I am a diabetic. I was told that there was no other possible explanation and that I needed to go home and wait for teh Retina Department to call me on Monday.

Monday rolled around and the phone rang. It was the right place, asking for the wrong person, and stuttering badly while doing so. I explained that she was calling me and not the other person, but that I was expecting a call, and was told that someone would be calling "any second" to schedule my retina appointment. I let over half an hour pass and I called my retina doc's office and found that they knew nothing about Saturday's situation. I was immediately scheduled for an appointment the upcoming Wednesday, which I went to.
I do have bleeding, but they don't like the way the doc in the ED handled it. I do need more laser surgery and that starts tomorrow. We are starting with the right eye to give the left eye some time to do some self-healing. The left eye will be in a couple of weeks.

This whole thing has my nerves at their very end.

I am also swelling more. I have been as active (and more active) as possible in my extremely painful condition, I don't eat much, and yet I still gain weight and it is ALL swelling- it isn't fat. I know fat. I have been fat. I'd have no damn problem if I were fatfat and it was my own doing. THIS IS DIFFERENT. I can NOT MOVE. It hurts. I can't cross my legs. I can't bend my legs up to put my socks on. I have trouble dressing and undressing and doing day to day things. My life is being severely altered and nobody seems to care to want to find out what the hell is going on.

Thursday, May 14, 2009

Okay because my life needs more confusion...

I don't think I mentioned that on my most recent appointment wit my PCP (April 27th) my mother had to take me what with the being very swollen and the eye surgery 2 days prior and the still being in pain from the car accident where the airbags didn't deploy.... anyway, some other people also came along because they didn't really have a choice.
The nurse/secretary was NOT happy about this and was rude and nasty and allowed me in for my noon appointment at nearly 2pm (while keeping a 10 month old and a woman with MS waiting with me) The PCP supposedly swabbed me to check for MRSA, but I have not received any results, nor have I been able to get taken off hold to get any answers (this woman is the only person who handles anything, it seems)
So on the 12th of May, I got a piece of mail from a collection agency supposedly about a bill for $34 from the PCP. I had never gotten a bill, nor should I, because I am insured, and disabled. There was no "date of service" on the bill and the agency did not answer, and had a fake v oicemail. Ironically enough, the agency number and the PCP number are only one digit off...hrmmmm....
Anyway, on the 13th of May, I got a hand-addressed envelope from the Dr.;s office and inside was a bright orange paper that said it was a notice of small claims trial to be filed within 30 days if I didn't pay the $34. Let me tell you, I am NOT paying the money. I do not owe it, and I was never sent an actual BILL, so they can spend the well-more-than-34-dollars it will cost them to take my disabled ass to court so I can watch them lose.
I called and had the doctor paged and asked him what was going on, and he stated that he would find out and let me know what was going on tomorrow, which would be today, and given that it is 7:11pm now I am fairly certain he isn't going to do jack shit.
I am going to have to type up a letter and send it certified and get this matter addressed. The whole thing is just ridiculous.

On Tuesday (I think) I get to travel for like 5 hours on public transit to pee in a cup and come back home. Such a good use of my time...

I would really like to know what is going on with the tests that they took while I was at my appointment on the 5th of May. Nothing accute doesn't mean nothing to report. I need to know what is going on and it is my damn right to know what is going on.

I actually left a voicemail with Johns Hopkins Hospital at 12:48am last night/this morning because I am that damn desperate for answers. I left another one today. How would I get to Baltimore if they thought they could actually do something? I have no idea, but I will cross that bridge if and when I ever get to it.

Tuesday, May 12, 2009

I don't even know what to say.

I was diagnosed over the phone by some "renal fellow" with Lupus a couple of weeks ago (oh, and this was five minute before going on stage for a final dress rehearsal- nice huh?) After many back and forth phone calls, I spoke to my actual renal specialist who said that I do still have a positive ANA, but that it was not a Lupus diagnosis.
She'd tested for many things, and after having me off of the Actos and the Diovan for a month or so, there was protein and blood in the urine (24 hour) and it was still there when she tested it when I had an office visit on the 5th of May. I had more blood work done, including a repeat of the ANA and I have to go back next week for another urine test.
She did tell me to go back on the Diovan and Actos to see if that would remove the protein from the urine, as this is a sign of diabetic kidney failure, apparently. Great.
She wants me to see an Endocrinologist, and since being seen (in renal) on the 5th I have not heard from them or been able to get through to get an appointment.
I did try to get one schedule while I was there, as the doctor said that he secretaries were SUPPOSED to do that, but they are actually all very rude, nasty women and just said "they'll call you!" and shoved me out the door almost literally.
I have been very, very swollen and in a lot of pain.
I have maintained at about 248lbs for a while now, but that is still terrible and painful and the breathing has been not so great too.
I need a DIAGNOSIS, not treatment of symptoms. I have had little to no treatment anyway, but the treatment I have had has done nothing. I need real help, and I do not know where to turn.