Briefly...

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.

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.

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.

I guess it has been a while..

The day after I last posted, I was in a serious car accident.
Thankfully, I was wearing my seat belt, as was the driver. We were both injured, but survived, and there were no other vehicles involved.

Separate from the on-going medical stuff that is already going on, on April 6th (day of the accident) I was taken to the ER via ambulance on a backboard in a cervical collar. My glasses were ruined.
They took a head CT, chest x-ray, abdominal CT, and left ankle x-ray. Nothing for pain. They waited to take the cervical collar off even after the tests cleared me because they said that the type of pain I was having indicated that there may be some sort of break in my neck and they wanted the attending to check it out. She cleared me.
On the 8th, I had visible bruising on my abdomen and increased pain. I had headaches isolated to the left side of my head and going down to my nose. I tried to get back to the ER via public transit, but got worse, so I wound up getting of the bus and getting an ambulance. They took blood from my groin because they couldn't get any from my arm. That was NOT fun. They did an ultrasound of my belly and that's about it. They did give me insulin even after I told them that I did not need insulin and that it would cause problems if they gave me any. They gave it anyway, which resulted in me getting soaked with sweat and shaking and being quite out of it with a blood sugar of 44, at which point they HAD to get a line into me to give me glucose by IV. Then they discharged me.
I was still having the headaches on Saturday, so I went to a different ER specializing in this sort of thing to get checked out.
I saw my PCP on Monday (yesterday) and he prescribed a muscle relaxer to try to alleviate some of the pain.

Okay, back to the "regular" stuff. (Ha!)
I did go back to the dentist but he did not lance the gland because of the trauma to my head. I am on Amoxicillin and have to go back in a week to see what the progress is and hopefully get it taken care of at that point.
During my appointment with my PCP, he agreed that I should be tested for MRSA, but did not do the test because he had to have the visit "only accident related" Ummm.... okay.
He also did not like the fact that the renal specialist wants me to try coming off of the Diovan and teh Actos to see if helps lessen the edema. Apparently both drugs cause edema. The timing does not match with when I swelled up, but she wants to be sure that they are not making matters worse. She called this morning about coming off of them and I am going to go with the opinion of the specialist right about now. I am not hypertensive, and I understand that some blood pressure meds are used to help prevent diabetic kidney problems, but this is a kidney specialist telling me to come off of it, so I am going to try to have a bit of health in that fact.

I went to have an abdominal MRI yesterday, to follow-up on the one I had in July. That was an event and a half. It took about 8 sticks from 3 people to get blood from me, and then when they got the blood, they didn't start the IV line. So it took about 6 more pokes from 2 more people to get the line into a very odd spot on my left arm. I was then told I'd be going in in 7 minutes. THEN I was told that the blood test was not back because the blood machine was broken and it would be at least another hour. I started crying and said that I can't go through this again, because it had already been too long and painful of a day. Luckily they decided that the results they had from a few months ago were good enough and they sent me in. It was difficult in my swollen and banged-up state, but I got through it. Hopefully I will get the results sent to me fairly quickly.

And so it goes...

I went to the renal specialist at the major hospital last Monday.
It was a VERY long appointment. She did not do much, physically, but she did a lot of writing and listening, which is more than I can say for many doctors.
She noticed what she called a "yellow spot" under my tongue and said that I should have it checked out by my dentist.
I am supposed to do a 24 hour urine, but am supposed to wait to do it til she calls.
I go back to see her the end of the first week in May.
The next day, I went to my PCP and he told me that I needed to "get control" when I started crying a tiny bit about the whole confusing mess, and when I said "That's the problem, I don't HAVE control" he told me that I am "too emotional". What a load of crap.
He basically made it clear that he doesn't know what is going on, and he doesn't care to find out. I brought up the MRI of my liver again, that needs to be re-done, and he said he'd write the order, but no one has called.
I did go to the dentist and he said it is some sort of gland that is occluded and I need to put hot packs on it and hope that it will take care of it, and I need to go back in a week to get it checked. If it isn't gone, then he will lance it.

Yo-yo-ing again.

It seems to be the favourite game of the medical profession.
To use me as a yo yo and not give me any answers at all.

I had laser eye surgery on my left eye on Wednesday. They gave me percocet before the procedure this time to lessen the pain during the procedure, and the doctor did not wipe out the gel from my eye afterward to avoid me getting another corneal abrasion. I was also given a prescription for Acular just as a precautionary measure. I should be getting a phone call from the office about setting up one more surgery for the right eye, and then I will have to have an office visit because he is not sure if they will be able to treat 100% of the vessels due to the fact that I have cataratcs. I've had cataracts for over 10 years, mind you, and they do not affect my vision, according to the doctor, but it affects the laser's ability to get to the blood vessels, I guess, and I am assuming that is what has to be disgussed.

On Thursday, I had a regular gyn appointment and my doctor was shocked at my weight gain and inability to move and at the brief synopsis of what I have been through. He said when I was there 3 times ago, I was 170lbs, when I was there in October, I was 212 (this was when this was all starting to get really, really bad- it started on May 9th, 2008 to be precise) and he had me logged as 245lbs for that day, but that was being generous. I am more like 250lbs and it is scary as all get out. He did his exam and then told me that I should go to the urgent care walk-in because they would be able to send me to someone who could help, or at least point me in the right direction. Sadly, after waiting through registration, and then waiting again to be traiged and such, I was told to "go to the ER" even though I explained that I have in fact BEEn to the ER many times and I am always told that I need to leave because I "won't die today". Well excuse me if I'd like to get this taken care of BEFORE I get to the point of being at the day where I AM there because I am about to die...

I went home. Nothing more I can do. I have a nephrology appointment with an "associate"of the "colleague" of the nephrologist I saw a couple of weeks ago who wanted me to get the "second opinion" tomorrow morning. I don't know what to expect, but I hope for the best.

I also have an appointment with my PCP on Tuesday. I don't expect much from that at all. Here's hoping though.

ER again.

I went to the ER again on Saturday night.
The swelling and pain got out of hand. I was up to over 250lbs and felt like my skin was about to pop off. I can't even explain to you how bad the pain was.
I was dropped off at 9pm, taken in back at around 10pm, and told them I had to go to the bathroom so could they please give me a johnny and a cup right away because I knew they would want to do a UA and I couldn't get to the bathroom without a 2nd johnny on. I also asked for a blanket because it was freezing and they didn't give me so much as a SHEET.
Come 11pm, I still had no sheet, no blanket, no johnny, no cup. I was also in a stretcher that was made for someone over 6 feet tall. It was very difficult to get on and off of even with the step stool (the one of which they gave me didn't have the handle bar thing).
I hobbled over to the curtain and said excuse me about 3-5 times and finally someone noticed me and I asked about the johnny, cup, and blankets again and said that it was urgent and that I'd been waiting over an hour already, two if you count the time in the first waiting room. A page was made.

At 11:30pm, I, after sitting on the backless, rolly chair since the initial request because of the height of the stretcher, hobbled over to the curtain again. I said "excuse me" 3 more times and then I said "Hey, excuse me" and then I yelled "HI!" and the girl who had been twiddling her thumbs 3 feet from me and heard everything I said from the first "excuse me" said "Yeah?" and so I said "Johnny. Cup. Now." and she said "Well!" and I said "I've been waiting a long time, ts not like I'm rushing you on the doctor thing, I'm just asking to pee and you've made me wait two hours!" and some other girl came in and asked what was wrong and I told her and she got me set up and I went and came back and asked for blankets again, and got one.

Then I had a student come in, probably around 1am, and talk to me, maybe 1:30, and the nurse started an IV line and got blood after sticking me 3 times. She stuck me a total of about 6 times throughout the night. It was not fun. I had an EKG and a chest x-ray, which I am told were normal. The student measured my ankles.

They left and pretty much left me there listening to the vomiting, screaming, possible-MRSA patient in the curtain next door. Said patient's son kept poking his head in and looking at me, which was creepy enough as it is... and then kepy backing up enough to bump me through the curtain. Talk about scary.

My boyfriend arrived at around 4:30am and the lady in the next curtain, who I'd been putting up with for a couple of hours already, started screaming more and saying that she was going to scream more and more and "I don't care" and at that point, I said "I do" and her son SCREAMED "Shut the fuck up!" so I yelled back "Excuse me but I didn't do anything to you, that was fucking unnecessary!" and of course THEN I get some attention. They came in and said "We've got a very sick woman over here" and I said "I understand that and that's why I have been so patient with her noise and dramatics, but that was unnecessary. I didn't do anything to them." and they moved me to another, single room, with a TV.

So then I had my boyfriend go and remind them that I am a diabetic and hadn't had ANYTHING to eat or drink at ALL for over 13 hours and could they please fix that. They got me a box lunch and then the nurse came in and started putting something into my up-until-now empty IV line. I asked what it was and she said "pain medicine" and started asking me about allergies. (Mind you, she'd already started administering the drug) I told her and asked again "What IS that?" and she said "Pain medicine. I just told you, did you forget already?" and I said "No, I mean what is it called?" and she said "Oh. Dilaudid." and THEN she checked to make sure I wasn't driving... and then a few seconds later I felt really hot and dizzy and my heart felt like it was goinbg to pop out and I said "Oh my god oh my god what the heck?"and then I needed to lay down more than I was, and then I pretty much was knocked out, and less than 15 minutes later, I was told that even though they admit that I was even MORE swollen than when I came in, that since I wasn't going to die right then and there, I had to leave right then and there.

They told me to follow-up with my PCP, and I called him and I have an appointment for noon on Tuesday. Great. A whole week. More than a week after the ER visit. WHat the hell am I supposed to do? I have a gyn appointment on Thursday. I swear if he thinks I should be admitted, I'm just going to have him do it.

The ER refused to give me copies of my test results. I did officially request them, but they said I have to go through the records department. I know that is a load of crap because I have gotten the results before. They just gave me a bunch of letters and numbers in paragraph form which I am about to try to decipher.