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.

Just keep swimming....

I am still distraught about my Missy.

To make matters worse, her ashes, which I was supposed to have within 2-4 weeks, have not been returned to me, and it has been just over 6 weeks now. This is because THEY LOST HER BODY.
I am freaked out. I can't even function.

I just found out I have osteoarthritis in both hands. The surgery I had a year ago today may well have been unnecessary.

I got a couple other really scary diagnosis but I am not ready to go there yet. I just can't.

My psyche is really fragile right now

There's 7 feet of snow outside and I am trapped in my house. It sucks. Nobody gives a shit if I am alive or if I have heat, electricity, or food, water, insulin....

I will don't apologize for thinking outside of the box.

A certain specialist for a certain thing may have gone ahead and canceled all of my appointments in any way related to this certain thing without my knowledge or consent, the act of which may have rendered 5 months of very hard work and thensome, basically moot.

I may have decided to continue with a certain part of the "training" for this thing yesterday and there may have been a class involved.

Let's say, for sciences' sake, that the class was on "exercise and dehydration" and that there were handouts passed out with information on them. Let's then say that the person "teaching" asked questions, the answers too which were all right there in black and white.  Let's also say that instead of reading the answers in order, exactly as they were on the papers, as answers, when asked for "examples of exercise" I volunteered answers that were nowhere to be seen on the papers, such as "housework" and "caring for/playing with/picking up/chasing after children and/or pets" and I was LAUGHED AT. Yes. Laughed at. Not by the class. By the "teacher". I don't even think that these notions are that far OUT of the box. Have you ever MET a child or a pet? Ever seen one on television? Yeah. I rest my case.

My hands are killing me and I took no medicine today, so I need to go change that. More when I can. I start PT for hand tomorrow.

Still trying to heal....

Left hand still has stitches in it. Still very swollen too- particularly the index finger- it feels full of fluid, and the middle finger feels lumpy, for lack of another word.

The incision sites are still very tender and I can not really have them uncovered for all that long. I can not bend or extend fully, or put much pressure. I wish I knew why it is taking so darn long. It has been very nearly a month since the surgery!

I start physical therapy for it on Friday- my intake, anyway.

So much more going on, but my head is spinning and my hands really hurt. It is hard to type, so I need to rest for now.

Pain

I am in so much pain.
I have virrtually no use of my left hand whatsoever, and am told I must keep it above my heart at all times,
It hurts like hell. There is sharp pain, and tingling, and numbness and throbbing, and it feels like my fingers are full of fluid and i have no idea what is normal. The pain meds barely even take the edge off.  I don't know what to do. I feel so helpless,

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.

My eyes...

They still have spots in them.
I really don't know what to do at this point about calling the retina doc or something.
It is driving me batty, as are the headaches.

I also think I did some actual damage to both of my knees during the production I was just in, but I am scared to get those checked out. I figure on that front, I will at least give it a few days healing time and see if they actually get better. If not, the "snaps" that I heard while moving around should probably be investigated.

I am pretty sure that my speep apnea is getting worse. I haven't really used the CPAP machine recently. It is so awkward. I will probably replace the filters and try it again in the relatively near future.

I am still a human water balloon.

Moving right along...

Still having eye issues. Doing the best I can to make it through the production I am in at the moment, and thankful for some amazing people helping to make it alright.

My rape crisis counselor is trying to help me to find some longer-term counseling, but at this point, I am on waiting lists. We shall see.

I had an appointment with the diabetes nurse, and she informed me that I have lost 15lbs since I last saw her in January. I still have a long way to go and a lot of issues to deal with, but at least its something.

I meet with a dietitian and a nutritionist on Monday and have no idea what to expect. I meet with a hematologist next week, and I am very nervous.

I am so drained, and in so much pain. I just want it to stop.

Catching up a bit

I went to meet with a nutritionist on Thursday. He had me in for a pretty big test (full body bone density test) immediately, but then told me that it "never happened" because my insurance won't cover it. He said that he can tell my body fat percentage by my bone density, but it came back as 51%. Now, I don't know what the "normal" percentage is, but I am thinking that in my case, this test is not all that accurate. I am NOT saying that I am not fat, what I am saying is that this is not ALL fat. 100lbs in about 3 days, remember. 100lbs of fluid. Anyway, I don't really know what to think right now, but I am trying to keep an open mind becuase he seems like he wants to know what is going on and help me. He was not given any medical history on me, so I stopped him and filled him in a bit before anything else. I have an appointment with him in a month, and he asked "How much do you think you can lose in a month?" and I said "I really don't know, I could lose 20 in a week and gain 30 in an hour- there is no rhyme or reason to any of this." We shall see, I guess. (I think my weigh-in at that appointment was 244lbs.)


Later that day, I got a call DIRECTLY from my endocrinologist regarding some blood work that "should have been flagged a couple of weeks ago" and got some good advice for the follow-up with my PCP. What she said was that my white count is high. It has been consistently high for a while. She understands why some doctors would blow this off as being nothing to worry, but given the circumstances, she feels it needs to be investigated. She also said that I should not discuss my diabetes with my PCP at my appointment, because I need to focus on why I was hospitalized and such. She said to bring up the white count, and that we'd deal with moving forward with diabetes things the next time I see her (which is relatively soon).

Also later that day, I was at a rehearsal and I was overcome with extreme sharp pain again. I could not hold back the tears. It was brutal. I hadn't been taking my pain medicine (I tend to try to not take anything extra on top of the huge cocktail of stuff I am required to take..) and I didn't have any with me. Luckily, one of my friends gave me a ride home. I took pain medicine and slept for a short while before it was time to get going to see the PCP.

The PCP took blood for a potassium level check, since it had been low at the hospital. She also wants me to see a hematologist. I have to check with her and see if that will be set up through her office or if she has someone that she wants me to call.

Right...

So, my primary care doc DID call me back, and she said that she wanted my kidney doc to deal with the Bumex issue since she put me on it and would know more about it. I had to call the kidney doc's office 3 times and finally got a call from the doc at about 6pm on Tuesday evening.
Her take on the matter is that there was no way it was the Bumex causing these issues (which seemed to be of no concern to her WHATSOEVER) and she recommended doubling the dose of the Bumex.
Against my better judgment, I did, and things are pretty much the same.
I am in a lot of pain.
My legs (shins/calves/ankles) have been buckling something fierce and causing extreme pain. I have been a bit dizzy fairly frequently.
Despite being told that my potassium levels are fine, the dizziness tends to subside if I eat a banana. I don't know what to think.
I have been pushing and pushing myself to walk/get exercise daily. I tend to walk at least a mile a day. It HURTS. I feel like I will die with every step. I feel like I could fall down at any given moment and not be able to get up. It is so scary.
I am really lost. I wish it would stop.

Still sick.

Today, I have SLIGHTLY less pain in my throat, depending on the moment. Both of my ears still hurt a lot, and it is still difficult/painful to swallow.
I have been short of breath, and coughing a lot.
I have been drinking a lot of fluids, as I was instructed. In fact, the ONLY thing I have had today is 2 pints of chicken broth with mini croutons, two small shortbread cookies, and water.
The cough is sometimes wheezy, sometimes dry and hacking, and this evening there has been a LOT of thick, sticky, opaque white sputum- sometimes with traces of blood. When it isn't thick and sticky, it is frothy/bubbly.
My ankles are even more swollen than usual, as are the rest of my feet.
Also, yesterday, I had smoked salmon & cream cheese on a bagel for dinner, and my urine smells like smoked salmon now... and I have had tons of broth, water, and I pee a lot.
I would think it would be out of my system by now.. but I have never had this happen, and it is really bizarre.
My entire body aches. It seems to just keep getting worse. I don't know what to do.

Also...

My breathing is getting worse by the minute. I need sleep.

My ears are doing this weird thing between extreme pain and numbness from the inside out.

My throat hurts more and more and I am having variations between a dry, hacking, painful cough and bringing up mucus and blood. It hurts so much to swallow.

I have spots in my eyes again. My neck, back and shoulders hurt more than I think quite possibly EVER. I am freezing on my hands, and the rest of my feels hot.

I can't find my thermometer.

I can't breathe.

I can't go back to the hospital even though they told me to if exactly this sort of thing happened.

I am in so much pain, and I am so scared.

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.

More

So I had the laser done to the right eye last week. I go in in a little over a week for the left eye. Right now I still have spots on the left eye and honestly can't tell if I have new bleeding or if the spots/blurring I have now is still from a couple of weeks ago. It is really quite frustrating. Scary too.

I spoke to the PCP today and he actually screamed at me. Mind you, I was not even accusing him of anything. Despite the fact that the fact that he did not do what he confirmed three times that he did do is HIS FAULT, I was not placing any blame or making any accuastions, I simply said that there must have been some lines crossed with the electric company because they don't have the letter so could be please send it again. Now, had he done it in the first place, he would have just had it to re-send. He didn't. I gave him all of the info again. He screamed at me that my electricity is not his problem, which it isn't, but keeping it on he can help with and I really don't see the gig deal. It is one sentence- literally, that they need from him. I pay my bills, like clockwork for the most part. I have been slightly lax with the electric because of extra medical junk going on BECAUSE I could get the protection. He claims that it isn't his problem. Well, if he can prevent it and he doesn't, and I wind up an asthmatic who can't plug in her nebulizer which runs on electricity, or cook food on her electric stove, or heat/ventilate her bathroom, or refrigerate her insulins... you see what I am getting at here?

Anyway, so moving on, I have swollen up even more. I am very nearly 260lbs now, despite the fact that I have been pushing and pushing and pushing myself all of the time. I walk as much as I can, and thensome. I don't eat all that much. I just don't get it.

I am in so much pain. My legs are getting worse, I not only can't nend them, but I can't extend them fully either. I wake up with my face swollen- moonface. My toes are so swollen that they have their own rolls over themselves and cut off their own circulation, as crazy as that sounds. It is not fair. I can't ned down to scratch. There is so much that I can't do.

I am scared.