Witty title, or somesuch...

I don't even know... I always feel like I have so much to write and so little time, or so much time to write, but so  little energy to do so.  Such is the case with many of the tasks that I always have every intention of actually tackling....

Right now, it is after 3:30am and I am just starting to type. Why? I have no idea. I will probably be drowsy again in about 30 seconds, but i have to try. I really have not updated and I am really not even sure what the heck I should start and/or end with.

I am still swollen.  Yes. All these years later. I have lost a fair amount of the edema and am working on losing more of it, as well as losing fat, but it is still there, and nobody ever did find out what caused me to gain 100lbs in 3 days... they probably never will, since they stopped trying without ever starting, it seems. Who knows?

So let's see....
Basic run-down/catch-up/update on the diagnosis and meds, I guess?

I have:
Type 1 Diabetes, hypothyroidism, fibromyalgia, PTSD, asthma, sleep apnea, unexplained edema, kidney disease, gastroparesis, IBS, GERD, vitamin D deficiency, anemia, migraines, my right sesamoid is shattered, I have carpal tunnel/trigger fingers/trigger thumbs in both hands, I have stones in my salivary glands/ducts and scarring on my vocal cords. I will be having surgery on the left side salivary duct in a couple of weeks and I am petrified. I have been having debilitating headaches for a few months and I have no idea why. So bad that they have made me fall down on more than one occasion. I was treated for a sinus infection, and while I have a little less pressure, I am still having nearly constant, very bad, headaches, and it is quite frightening.

I am on Novolog through the insulin pump now (the One Touch Ping) I have been on it for about a year and a half now and my A1c is 7.1, which is absolutely amazing! I have  Insulin pens for backup in case of pump malfunction/failure.
Other meds: levoxyl, diovan, zyrtec, ranitadine, omeprazole, vitamin D, ferrous sulfate, phentermine, topamax, bumex, junelle fe, albuterol.... I think that is all, but I may be forgetting something.

I have been getting a fair amount of exercise over the past several months, mainly from doing a LOT of walking. I mean a LOT. Oddly, though, I GAINED some weight, which is both frustrating and frightening.... not really sure what to make of it.

I have also had a couple of completely NOT ROUTINE hospital stints in very recent history, and those ones REALLY threw me for a loop. I don't know if I was slipped something or what, but it wound up with me being unconscious for MANY hours, and having NO recollection of how I got to the hospital or out of all of my clothing and into a johnny and apparently SOMETHING else must have happened because I wound up with a GIANT bruise under my arm which, as it fades, is now revealing a giant CUT.... the plot thickens....  but I don't know. A few days later I was in the hospital with food poisoning, which included a lot of blood from my nose, and massive belly pain. I had a really great person with me through all of this, and now that person is scared of me, and that kills me.

I honestly don't even know how to function right now.

 

Sick of it all.

I am so sick of hospitals.
I had to go to the ER about my eye on Monday because I lost most of the vision in my left eye all of a sudden.
I went to see the retina specialist on Friday and wound up having laser surgery on the aforementioned eye. I also had an allergic reaction to the fluroscein contrast, which I am still dealing with.
I started having chest pains on Saturday evening, and went to the ER after much hesitation.
I was told that my liver function is low and my creatinine level is up.
The rest of the bloodwork looks good, apparently.
They did an EKG, BP, and CO2 and gave me Toradol in my vein and that was it.
Prescribed a topical for my neck (for the reaction to the contrast) and sent me home... 6 hours before the public transit started running.. and this hospital would be a 3+ hour commute on public transit. The cab driver drove 80MPH. Not helpful.

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.

Still moving along...

I always think that I should be updating this thing more often, but then I stop and think "Well, what is the point, its the same old story again" which os pretty much the case right now.

I continue to walk. Quite a bit, actually. In fact, just this weekend I walked around for an hour and a half, looking for a group of people I was supposed to meet up with for a random, unknown spontaneous event.

Once I finally found them, it turns out that there would be more "walking" involved- a la Society of Silly Walks. Basically, I was walking around in one way or another from 1pm- 6pm. Man, did my body ever hate me for that!! Still, it was fun.

I also walked about 2 miles on Friday, and have been pretty active all week thus far. Oh, did I mention that I may or may not have a break in my left ankle/heel? Yeah, so a lot of this was with an air cast on or just having taken it off.

As far as doctors are concerned, I see both the kidney specialist and the endocrinologist next week. I don't really know what to expect. I wish I could get moving toward the pump. I mean, I am definitely making progress, but I wonder when they will actually start me on it...

I don't really know what else to say that isn't totally stale. I am still sick to death of being swollen and in pain, but I am doing the very best I can to avoid being negative and live my life to the fullest.