Saturday, December 7, 2013

Ball of nerves.

I have not been sleeping very well. I have pretty much not been sleeping at all. The small bits of time when I do sleep, it is frequently interrupted with poor breathing, choking, and worry.

I am having surgery in a matter of days, and I am scared. It is pretty risky. The doctor said she hasn't seen a stone this big before, and that due to the location, there are high chances that I could wind up losing the entire gland, or that the nerve that affects feeling in the tongue could get hit, among other things.

This is a very big deal for me and I am petrified.  It's bad enough that I have to drink drink drink drink all of the time because I am dehydrated every few seconds due to not producing saliva because of these stones, but running high risk of having things that could affect the way I sound, or if I even produce sound at all.... that is what is killing me right now.

I have not opened my mouth to sing since the 22nd of November, and the last thing I "sang" wasn't even really me singing, it was me doing a silly voice that my friend put me up for at a karaoke place I will never go to again.

I haven't really been around friends all that much either. I have had so many appointments.  I had three yesterday alone.  I don't think there was a single day this week that I didn't have at least one appointment, and most days I had more than one, and even when I had one, it was a long one.

My mind is all over the place and I don't really even know what to think.  My house is a mess because when I am here, all I can do is curl up in pain and cry. I had gotten so much cleaning done and now it just looks like hell. Not like anybody ever comes to visit me or anything.

I don't know. I am just rambling I guess.  I went to meet with a bariatric surgeon on Thursday. I don't know if I am going to do it or not. She seemed a bit abrupt with me, for somebody who took me in nearly an hour late, and she shot down my answer for something she asked me, so I just don't know. I'd say we'll see at the next appointment, but she didn't have me make one, and the coordinator didn't call me back, so I guess its more of a "we'll see...whenever...."

Right now, I am just trying to focus on getting out of the pain in my right leg/side/back (sciatic nerve, perhaps, I've been told) and trying to breathe, in general, and to not worry about the 16th...but that is much easier said than done. I am a nervous wreck. I am so damn scared.

Friday, November 29, 2013

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.


Wednesday, October 23, 2013

So much happening, and so little time/strength to write!

I don't even know where to begin anymore. I guess I can start back up sort of where I left off...
The ENT doc in the ER sent me to a specialist. (or rather, told me to go to one, so I found one, and I did) The specialist agreed that Sjogren's Syndrome was a possibility and that my endocrinologist should order tests.
She did. I do have a positive ANA (Anti-Nuclear Antibody), which had been shown before, but whatever. She says its a "low- positive" or something like that, but she talked to my kidney doc, and he told her to run the test for the Sjogren's antibody. After waiting anxiously for over a month, we found out that I do NOT have said antibody, which is great on one hand, but on the other hand, it kind of puts us back at square one.

The throat doc ordered a neck CT with contrast, and also a vocal therapy evaluation. My next appointment with him was right after my vocal therapy evaluation (at which the vocal therapist said that she would be recommending vocal therapy because I have scarring on my vocal chords) The throat doc said that they found that I have stones in my salivary gland. IN ALL OF MY SALIVARY GLANDS. I didn't even know this was a thing. He said to go see another particular doctor as soon as possible, and he said that only a few people in the world do this surgery, and she is one of them. That was a scary thought. I saw her, and she said that the stone on the left is HUGE and that it is in the duct, completely blocking up the gland. She said that the surgery would be hard, and that she couldn't book me then because despite having been on high dose liquid antibiotics for 10 days, it was massively infected, so she prescribed more.

I went back today, and she said that it is much less swollen, so that is good, but the closest surgery date available is in the middle of December,  so judging by how often this thing has been causing over the past however long its been, I am in for a very long couple of months. Ugh. I am scared out of my mind.

I can not even BEGIN to explain all of the GI stuff, eye stuff, and migraines that are going on at the same time as this. I can't try to tell you why I have gained 15 or so pounds in the past month despite the fact that I am eating relatively well, and exercising a LOT, but I have. I don't get it, and it scares the living daylights out if me. I have been swelling up again too. Nobody can tell me what the heck is going on.
I will try to update more later, but I am freezing, so I need to go try to warm up.

Tuesday, July 23, 2013

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!