Here I am again...

A lot has happened.
There is still a lot that I haven't processed.
I have lost a fair amount of weight, so that is promising.
Most of that comes from walking. I walk a lot. The past few weeks we have had weather consistently abobe 93 degrees F, so I haven't walked QUITE as much, but still as much as I can.
Feel still hurt like hell, but they function, for the most part, so that's good.
The doc who says I need surgery for my shattered sesamoid has not brought it up again, and at this point, I have dealt with the pain for so long that I wonder if it may be best to just "grin and bear it" for now.

My retinas are stable! Just had a check up about a week ago!

Kidneys are improving! Doc walked in a couple of weeks ago and said "What the heck have you been doing!? You're healing! This is great!" because my Creatinine went from 1.7 to 1.4 or something like that.

Diabetes is improving. Got the A1c to and stabled at 7.3, which is amazing.

Then my pump malfunctioned, and I wound up in diabetic keto acidosis (DKA), dehydrated, and with a creatinine level of 2.1  Luckily, I didn't lose consciousness at all, and I made it to the hospital as the doc told me to, and outside of a little issue with the IV, I was able to be treated and released in not TOO long of a timespan. The issue with the IV though- that was messy. I was laughing about it though. That poor nurse! It TOTALLY wasn't her fault!
I am a hard stick to begin with- that is putting it mildly. When severely dehydrated? Pretty dang close to impossible. This woman stuck me so many times, and she kept apologizing and I kept telling her not to worry about it, I am a hard stick, yadda yadda and just remaining as calm as possible. my thing is that I am basically fine- as long as I don't LOOK.
Well, all of a sudden, I feel a little drop, and the nurse says "Oh, you're a bleeder, huh?" and I said "Huh?" and turned around....OOPS! When I turned around, I saw this:

Yup. It is a lot more than it looks like. This was taken after I'd been cleaned up a bit, but you get the basic idea. The blood took up almost half of my shorts. It went through to my underwear and my skin, and around to the backside.  Apparently, they got a new type of tubing in the ED, and they had a tendency for the caps to pop off, which this one did, resulting in lots of blood. They went and got me some surgery scrubs so I didn't have to lie  there/leave covered in blood.
That poor woman was beside herself though. I told her over and over that it was okay and that "shit happens and clothing can be washed" so not to worry about it. I do hope that eventually, it sank in.

So I was without my pump for 4 days until the replacement arrived, and taking inhections never got back to "working" in that time frame, so my sugars were a bit high...but manageable, thankfully. I have been back on the pump for 2 weeks or so now and everything is basically back to normal.

Unless you count the debilitating ear, nose, and throat pain that I have been having, and is getting progressively worse over the past month or two. Right now, I am on a soft food/primarily liquid diet because I can not swallow very much/very well. It is very painful, and swollen.
The ENT doc thinks I may have Sjorgren's Syndrome, so I need to have some tests done.
The also said that acid reflux and TMJ are making my pain worse, and that I have Proliferative Verrocous Leukoplakia, so that sounds like fun.... more tests on the not-too-distant horizon, I am sure.
I had never even HEARD of any of these things til yesterday. I am overwhelmed and scared, but hoping for the best!

More on that...

I went back to the ER on Saturday.
The pain did not stop, and it got worse. I got pain in my lower back, and a really terrible, bizarre pain that started in the front-right side of my nack and wrapped around to the center back-right side of my neck. It hurt SO badly. I also swelled up more.
I wound up getting admitted.
The staff at this particular hospital were so great. They treated me like a human being, and really seemed to want to find out what the heck was going on.
Sadly, when they discharged me on Monday afternoon, all they had to say was "Well, we're not going to diagnose you with any weird diseases or do any invasive surgical procedures, but we still have no idea what is going on, sorry." Yeah. So that didn't help much.

While I was in, they did a cortisol test (?) where they took blood, injected me with something and then took more blood an hour later. They say the test showed it wasn't the cortisol levels..
They took an HIV test, and that was negative.
My Potassium was low one time, so they gave me some to drink, and I guess it brought it back up.

My blood sugars have been pretty darn good too.

I have no idea what the heck is going on. It's been almost 2 years. I need answers.

So let's see...

Last week, I had a kidney doc appointment. I got seen 2 hours after my appointment time, and only for about 15 minutes, most of which was spent with the doc typing. I left to go to the blood lab and wound up having to sit down for a while and eat a liquid lollipop because my blood sugar had taken a nose dive. Got blood work done, and left.

On Thursday, I had an endocrine appointment. got praised for doing well and having my A1C drop several points. I have a ways to go, but am back in the single digits, which is good. More blood work.

Friday I went to New York City for a show and spent the night wandering around. I was walking almost the entire time between 12:20am and 8am, with the exception of about an hour or two total. I mapped it out a bit and estimate that I walked just less than a marathon. When I got back to Boston, I threw up blood at the train station and was rushed to the hospital, where I was treated like absolute shit. I was discharged with Ranitadine, Protonix, and Zofran(?) which was not covered by insurance and cost about $70. Eep. I spent the next couple of days pretty much unable to move, and had another swelling episode. I stopped the Protonix, as that had made me gain weight in the past... I am still swollen though, and in a lot of pain.

On Wednesday, I had an appointment, and then I went to visit a friend of mine. I was fine, albeit a bit tired, and then all of a sudden I had a massive stabbing pain in the lower left side of my stomach and I could barely move. I felt like I had to pee, so I went into the bathroom. Nothing. Here I am, the girl on 2 diuretics, unable to pee. This is not good. My friend insisted on calling an ambulance. They came, they carried me down most of the stairs, and then they dropped me. No, I am not joking. They picked me back up, and got me into the ambulance and took me to yet another hospital. Luckily, this one treated me like a human being. It was almost freaky. They did a bunch of tests. It was scary, not gonna lie about that. It was also very odd that they wanted me to umm... put the thing in for the pelvic ultrasound BY MYSELF, but yeah, that wasn't about to happen, as the way I am swollen I certainly couldn't bend at the angle they had me at, and also, hello... abdominal pain!?!?!? They did an abdominal and pelvic ultrasound, a regular pelvic exam, and an abdominal CT. They said that I had blood in my urine, a cyst on my right ovary, and a small kidney stone, as well as probably ligament strain.

They gave me a prescription for oxycodone and discharged me. I still haven't filled the prescription because I can't get to the pharmacy. I haven't eaten since the very small amount I had at about 7am on Thursday. I've got nothing to eat or drink in the house, so basically, I am screwed.

I guess I should do a basic round-up.

On a somewhat unrelated note, I fell down some stairs this weekend.
Went to the hospital via ambulance when ibuprofen didn't help.
As I expected, nothing was broken, but I sprained my wrist and knee. I was given immobilizers for both as well as a cane.
Kind of hard to get around with them, and not entirely sure that they are helping. I am in pain, but trying to push through. I have not filled the prescriptions for pain medicine yet. I hate taking extra pills... but damn, this all hurts.
What I could really use is a decent massage. Heck, I could use any massage at this point.

So I have been on the new diuretic since Saturday. It is called Torsemide. No longer on the Lasix.
So the current med list is as follows:

Lantus ~ 50 units in the morning
Humalog~ 12-18 units with meals
Diovan~ 80mg
Levoxyl~ 100mcg (can't remember if I mentioned that my endocrinologist upped that last month or so...)
Zyrtec~ 10mg
Torsemide~ 20mg
Vitamin D~ 2/400 unit tabs

Study medication, which may or may not be a low-dose of Cymbalta (I am off of the Topamax temporarily for the study... and also that gastroparesis med)

No prescription:
Vitamin B Complex+C~ 100mg
Cinnamon~ 500mg

I really don't know if the CPAP machine is working. I ordered a new mask over a week ago now and it still isn't here, so I am using the one that bothers me quite a bit, and nobody has bothered to return my calls about that.

I have had the flu shot and the H1N1 shot. I was given Azithromicin last week when I was feeling like crazp, and after they had been telling me for 3 weeks to take Sudafed, which I did, and it didn't help.

I swelled up last week to the point where my legs where tight, shiny, and immobile. (along with the rest of me...)

I am so sick of going to doctor after doctor, after doctor and getting NOWHERE. No answers. Okay, if you don't know, how about you keep looking til you DO know? What do these people get paid for? "Oh, your electrolytes look normal and all" Okay, so what else could it be?
If my kidney function is good, then its not, then it is.. how about we investigate further?

Are we forgetting a few months ago when the allergist refused to do the tests? Outright refused? What if this is all a huge allergic reaction? But to what? I don't only swell up in the house. I have been swollen for 18 months now. It makes me sick to look at myself.

I am a good person, but people don't look at that. They look at the fact that no matter how damn actuve I am (and I am NOT a sit-around, lazy person. I am a here, theer , and everywhere person) the swelling holds me back and makes me look like a giant fat blob. I am carrying 100lbs of fluid around in me, and I can feel it, and it makes it hard to move, and it makes everything hurt all the time.

I am scared out of my mind, and I just want to be back to size 14-going-on-12-and-losing again.
I miss being somewhat decent looking. I miss being happy. I miss being able to kneel and bend and stretch and touch my toes and all that stuff that normal-ish people can do.

Floating away... if only...

So I swelled up some more, and it got so brutally painful.
The skin problem spead and worsened and became unbearable and I could barely even sit in a normal chair, let alone get up and down like a "normal person".
We'd gone to a show earlier in the day, and as I sat down in the seat, my calves brushed against the front of the seat and folded over themselves, in a sense, and just... I don't even know how to describe it, but it hurt like hell and for quite a long time.
I was much worse when we got back to my place and finally I gave in and said that I needed to go to the hospital.
They did seem to listen more than in the past, I will give them that. They also admitted that they could see and feel the fluid in me.
They took a urine sample and a chest x-ray. Taking blood was quite a fiasco. I was stuck 2 or 3 times in my left arm and they couldn't get anything. Same with the right. So they came back after my x-ray and went for the artery in my right wrist... fun, yes? Ugh. They tried a few times there and wriggled the thing about a bit while I was told to NOT MOVE WHATEVER YOU DO!!! and still nothing. Yes, I am that damn swollen. Then they tried the artery in the left wrist, and finally, after wriggling about and taking around 15 minutes or so for 3 vials of blood, they were done with it.
Nothing really came of it.
The doctor did try to swab the nastiness on my neck/back for MRSA. There was no pus or anything at this point, but he lanced one and is culturing the blood. That can take a couple of days, I am told.
I was given a prescription for Lasix (40mg) and Clindamicin (antibiotic) and sent home. What I don't understand is why they gave me only 15 days worth of Lasix and why they are using the same dosage which has proven useless in the past. Oh, and I also don't get why they didn't give me any while I was there... do they EXPECT me to live near a 24 hour phanrmacy?!

This morning, my old PCP called. (I had left her a voice mail last week after the new one screamed at me) I have an appointment with her on Monday morning, so here's hoping I can get there. (I left initially because I moved a fair distance from her office, but now that I can't walk the mile to my new, local, abusive PCP's office due to mobility deteriorating, I guess its kind of moot now, isn't it?) Here's hoping things get a bit more organized.

Tomorrow I see an endocrinologist for the first time in many, may years.
Thursday, more lasers.

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.

Hmmm...

Okay, so I guess I should do a medicine update since it has changed a bit.

I went off the Maxzide and was put back on Lasix then I was taken off of those and but on Bumex after I'd been given Lasix by IV several times a day while I was in the hospital, but not discharged with anything...

Now the kidney doctor does not want me on any diuretics because she says that she has seen too may patients start on them as young as me and wind up n dialysis and doe because of it, so she sent me for the aforementioned tests and x-rays and wants me to return next week and she wants me to go see one of her colleagues and a major hospital.

My PCP seems a little miffed because he thinks I will be upset with him when I swell up again and have no diuretic to counteract it- but they aren't DOING anything, so what it the point? I mean, I was on the Bumex a couple of weeks ago when I went to the ER after gaining 10 pounds in 2 hours, so really... I'm mad that I am swollen, and scared... but I swelled up on May 9th, 2008, out of the blue before I ever met this doctor.
The PCP did say that I had a positive ANA a few times so that I might have lupus, but I have no idea.. I have heard that before. I don't know what to think. I need to ask around and find out what I need to do to get an answer on that one.

Tomorrow, I am having the scratch tests at the allergist office, and hopefully after that, I will be able to take my Zyrtec, because the last time I took it was last Friday morning and I am itchy as anything night now!!!

Anyway, the current meds:

Lantus
Humalog 75/25 (though I have lowered the dosage)
Topamax
Levoxyl
Diovan
Zyrtec (except for this week because of the allergy test)
Albuterol (as needed)
Ranitadine (as needed)

I think that is everything.

Side-trip

Wow.
Okay, so I haven't been able to continue with my updates recently because I was actually admitted to a hospital somewhat out-of-my-way unexpectedly and have been there for over a week.
I am glad to be out now, and hope to update again soon.

More...

So continuing on...
When this all began, I went to one ER and was told that it was in my head, given an ativan and sent on my way. Two days later, I was taken to a different ER, more blood was taken and oxygen was given but I was told that I was not going to die that very night, so I had to go.
I was seen at a hematologist's office, but was seen only by a nurse practitioner, never actually seen by the hematologist. Many blood tests were done.
Many outside tests were ordered:
Stress echo- I was told this was normal, even though I felt like I was going to die.
Abdominal CT- normal
Bilateral leg ultrasound- normal
Abdominal MRI- a hepatic adenoma was found- a (at that time) benign) tumor that was presumably caused by LoEstrin24. This was told to me on July 28th, 2008 and I was told to come off of the pill immediately and that the MRI would be repeated after a brief time off of the hormones. As of this date, I can't get anyone to order the repeat of the MRI.
Pelvic Ultrasound- normal
The nurse practitioner put me on Lisinopril.

I have seen my gyn and been cleared of anything on his end.
My first "new" Primary Care Physician told me that he would not be my doctor because I have too many previous diagnosis. This was before I even swelled up. I got a new PCP and he ran a bunch of blood tests and sent me to a kidney specialist.
I had a terrible cough that would not go away, and the PCP determined (after months of antibiotics) that it was the Lisinopril causing an upper respiratory infection. I was taken off of it and eventually, the cough got a bit better. I still have left-over effects from it.

The kidney specialist first said (without doing ANYTHING, I kid you not) that there is nothing wrong and sent me home. Then she called and said that there was protein in a previous urine (not done in her office, because again, she did NOTHING) so I needed to come back to do a 24 hour urine. I did that, and she decided that being on Lasix and Triemterene was dehydrating me, so I needed to come off of it. She also said that my potassium was low.

My PCP put me back on the Triemterene, but on a lower level- Maxzide, which I am on now. I was off and on the Lasix a couple of times too. Nothing has actually shown any results, diuretic-wise though.

I have gotten weaker and weaker and my mobility has gotten severey impaired. I still have no answers. I will write more later. I am too tired.

Welcome!

I guess I should start with the basics.
I am looking for answers in a world where I can not seem to find any.
It seems that I have too many medical issues at once to get anyone to take me seriously.
I am a 29 year old female.
I h ave Type I (juvenile onset) diabetes and have been insulin dependent since childhood.
The word "brittle" has been used to describe me, and I have struggled with controlling my sugars, but I do the best that I can. My last GH A1c was 10.2, which although still high, was an improvement from my "normal" range of 13-14.
I was improving.
I have fibromyalgia, which was diagnosed in 1999. It has been treated only with a very small dose of Topamax for the past three or four years.
I have asthma, which tends to be triggered by extreme heat or cold, humidity, and wind.
I have hypothyroidism.
My cholesterol is apparently borderline high. I was on Lipitor for a while several years ago, but got debilitating back pain from it and was taken off of it.
I currently take:
Lantus (insulin)
Humalog 75/25 (insulin)
Topamax
Levoxyl
Maxzide
Zyrtec
Albuterol as needed
Ranitidine as needed

In early May, I started swelling up for no known reason. I was walking around all day long in a size 14 jeans. I came home and was going to watch movies with my boyfriend. It was a rainy day, and we were staying in, so I changed into my pajamas. I went to put my feet up on his lap, and we both realized very quickly that something was wrong. I was swollen like a balloon.

When we went to lay down, he noted that my breathing sounded funny. He said it sounded like "pop rocks" or like "wringing out a wet sponge" and the swelling was just terrible.
I went to put my jeans back on. No luck. I tried a size larger and so forth... got to the one pair of size 18s (with a lot of stretch to them- more like a 20) that I had and just barely got them on. When we finally got to the hospital, I weighed in at 30lbs heavier than I had been that morning.
I was hyperventilating pretty badly and they didn't even give me oxygen. They took some blood, gave me an ativan, told me it was IN MY HEAD and sent us on our way.

2 days later, I was still no better, and about 20lbs heavier still. We went to a different hospital. They gave me oxygen and took more blood and said they didn't know what was wrong, but mentioned that the previous hospital had mentioned that I have lupus, which they certainly didn't tell ME... so I freaked out. Then they basically said since I wasn't going to die that very night (that is what they said, actually) then there was nothing they could do and I had to go.
No answers as to why I put on 30lbs in 3 hours and 50lbs in 2 days. Great.

I went to a hematologist who took a lot of blood, but got no answers. Got a new PCP, who sent me to a kidney specialist, who told me that my kidneys are fine. I got put on Lasix and Maxzide and then taken off of the Lasix and put back on then taken off again being told that it was dehydrating me.

I got debilitating back pain right before Christmas. Out of the clear blue sky. No one could give me answers. Finally, I had the idea to call my PHARMACY and have them run a check on all of my meds. What do you know? Zocor, which I was on for my not-all-that-high-cholesterol, is in the same family as Lipitor was. We don't know for certain that it was the culprit, but I stopped taking it, and eventually, the back pain greatly lessened. Hrmmph.

There is more, but I need to stop for now.
If you have any input at all, please feel free to e-mail me and/or comment here.
If you know who I am, please do not use my name.
I am keeping this a nameless blog.
Thank you.