More results to try to twinkle through...

As mentioned in my post yesterday, I have had a great deal of tests done on me in very recent history.
After my full Pulmonary Function Test, I was sent for a CT scan of my chest. It shows that I have a small hiatal hernia, and a T5 vertebral body hemangioma. I am not exactly sure what this even means.

I had an x-ray of my cervical spine, which shows mild thickening of the wall of the right maxillary sinus. Suggests chronic sinusitis- but I just had this surgically removed, so I don't know what the heck is going on with that now...
There is a small rounded calcific density in the soft tissue of the submandibular region, probably in the left submandibular gland- so I have to ask if that means my salivary gland stones are back...

MRI of the lumbar spine shows slight straightening of the lumbar lordosis. That statement seems a bit backwards, so I am a bit confused by it.

x-rays of the right shoulder: normal glenohumeral cartilage space with a vacuum phenomenon. Slight hypertropic change from the undersurface of the acromion. 2 rounded calcifications over the subcutaneous soft tissue of  the upper left arm "calcifications suggest prior injection granulomas" but I never had an injection in my shoulder at the time of the x-ray.

MRI of the C-spine:
C2-C3- minimal posterior disc osteophyte complex
C4-C5- mild posterior disc osteophyte complex, mild central stenosis, minimal bilateral neural foraminal stenosis
C5-C6-  mild posterior disc osteophyte complex, mild central stenosis, minimal bilateral neural foraminal stenosis
C6-C7- mild posterior disc osteophyte complex, minimal left neural foraminal stenosis

Prominent posterior epidural fat in the visualized upper thoracic spine. This mildly narrows the cal sac space.
Several levels of mild central spinal stenosis and minimal foraminal stenosis, on top of cervical spine degeneration.

Basic Meta is decent though....

Carotid Duplex- No evidence of hemodynamically significant disease in the left or right carotid artery.

The sleep neurologist said that my study showed that I am a very difficult case. They tried me on CPAP and BiPAP during my study and I had SOME minor improvement with them, but sometimes my breathing got even WORSE on the BiPAP. He wrote a prescription for a special machine that is something of a combination of things, and now I have to wait on insurance approval, then for them to tell me a company to supply me, etc. Then we shall see if it works. I am very nervous, but I hope that it will work.

I am STILL without my CGM (continuous glucose monitoring) device, thanks to the supplier being super flaky, and the same company is making it so that I am almost out of supplies for my insulin pump as well. This is a very scary prospect. Several calls and e-mails have been made by many people, and no progress as of yet. It has been about a month now. It is nerve-wracking.

Had another small test today. Tomorrow I start back up with vestibular PT.

Here we go again...

On Monday night, I wound up going to the ER.
I was out of Lasix and didn't know it, but I was swollen like crazy BEFORE it was time to take the medicine. I swelled up about 10lbs over night.
The skin on my feet, calves and whatnot up to my knees.
My thighs won't even go together properly, and I can FEEL the water with my hands.
It is so painful.
A small rash type thing developed in my right ear and on the back of my neck when the swelling happened.
I was put next to a doctor who was doing dictations and I had a panic attack/PTSD episode because he was dictating some very graphic abuse.
They gave me an Ativan and IV Lasix and pretty much kicked me out the door.
The discharge sheet says that I swelled up because of my missed dose, even though I told them MANY times that I was swollen BEFORE missing my dose.
I am STILL swollen, even though I have had my Lasix as I normally do now.

I have an appointment with a sleep neurologist tomorrow, to follow-up about the CPAP machine, and an appointment with the diabetes nurse on Friday.
I also have a fibro-study visit on Tuesday and an appointment with my PCP on Wednesday. Here's hoping that I get some relief!

I am so swollen. My knees won't bend very much and it hurts so much.
I need a diagnostician. Immediately. I need to know what is going on.

I don't know what to make of anything, really.

I am in so much pain.
I am still swollen.
I have exercised so much, and I am still heavy and huge because THIS. ISN'T. FAT.
Can you imagine being treated like some lazy fat bum everywhere you go?
That is my life.
I look like hell and everyone assumes it is my fault.
The doctors, they all tell me I am sick, but they don't know why, so they all default to asking me if I eat a lot of salt and drink a lot of soda.
a) The answer is NO to both questions
b) Even if I did, NOBODY could eat enough to gain 30lbs in ONE DAY and 70 more within the week. It just. doesn't. happen.
I have actually been nearly 100% soda-free for about 3 months. I have had a small amount here and there, but I have been drinking mostly water and juice.
I don't eat much at all.
I walk a LOT.
I have spent the past 2 weekends pretending that I am not sick. I participated in a few local goings-on, all of which involved a HUGE amount of exercise.
I haven't lost an ounce.
Now, I am paying dearly for the "fun" I had. I can feel every muscle in my body right now and they are all VERY angry at me. I have had about 5 hours of sleep in the past 3 days.
My breathing is not that good and I have been getting massive heartburn at night, even when I don't eat anything. I am wondering if there is any way it could be related to the CPAP machine, what with it blowing air into my lungs, maybe just irritating them? I don't know... all the respiratory company cares about is their money, so they won't talk things out with me.

I was supposed to see a dietitian today, but I was in so much pain, I canceled because I couldn't handle the commute on public transit, and I also was in no mood to get talked down to about my weight, when all the damn weight is FLUID that they won't tell me how to get rid of.

I am scheduled to meet with one of the sleep doctors in early November, I think.

I am so exhausted. I am tired of fighting. I tell people I do these things I shouldn't be doing because I can't let the illness get me down and I have to live my life. It is partially true, and partially that I am a better actor than anyone gives me credit for. The truth is that I am falling apart and I struggle to stay alive every day. The truth is that I am scared. The truth is that most of the people who call themselves my friends have not been there for me. The truth is that I don't have nearly as much energy as I sometimes appear to have. The truth is that every time I take a step, or a breath, or I move my hands or feet, or anything else, I am in a world of pain. The truth is that I feel like I am suffering a fate worse than death, because being dead can't possibly be this painful... I just wish that the trip I seem to be taking to get to the other side wasn't so damn long and painful.

Ups and downs

So I am still on drops from the vitrectomy. My eye is healing slowly. I am still in pain, but doing the best I can. I am having more surgery on the left eye next week, but this one will be laser.

I have been trying to get out and about as much as I can to get exercise in as much as I can.

I still don't have a CPAP machine. The company actually called yesterday to tell me that I was all set and someone would be out soon to set me up. They called not 5 minutes later to tell me that "wait a minute... you might not be approved" meanwhile, I stop breathing at night and cough up a good couple of tablespoons of nearly solid gunk when I wake up choking. It isn't fair.

I can't remember if I mentioned that my endocrinologist thinks I may have gastroparesis and she put me on a medicine called IC metoclopramide. She also upped my Levoxyl to 100 mcg.

Other than that, my med list remains the same as the last update.

I guess that's all for now.