Whistling Past the Graveyard: The Murderous Transit Driver and the Fed-up B whose Heart Almost Exploded

I don't even know where to bgin at this point.
I have not updated in so many years, that it seems pointless to really look back to see where I left off with writing, since I have definitely been fighting my hardest to move forward and, well, survive.
So some bullet points:
* I am still the effing "sick girl" to most, and probably more than half the time, to me as well, but I am working not to be, to the best of my (and my clinicians) abilities. 

* I was being constantly abused in many senses of the word, for 6 straight years, at my previous residence (aside from the other abuse that I have been dealing witth for decades and continue to try to power through and overcome) and wound up losing that place of residence in January 2019 and becoming homeless til jut a month ago (September 2019) Thanks to some wonderful friends, old and new, I didn't have to spend any time on the street, which would have literally killed me in my current state of physical being. I am grateful for that, though it was, of course, still quite difficult and humiliating AF, as they say.

* I am currently in a new place, which, while not ADA accessible, which I sadly kind of need right now... is a roof. It has carpets, which SUCKS for my allergies, and virtually no kitchen, and I have not got the strength no space to unpack, but I am doing my best.. very slowly.

* I HAVE MY KITTIES BACK. They were fostered by some very wonderful friends of mine for the entire 8 months, and cared for very well. These friends still help out, as my boy cat has been diagnosed with severe hyperthyroidism and kidney disease (apparently we are birthday AND kidney twins, with opposite thyroid issues...my poor baby..) and they have been providng his meds and special food. I am grateful. He is also 100% deaf, which is very difficult- probably on both of us- but I still talk to BOTH kitties.

* I have been using transportation services provided by the Medicaid company in my state, for a couple of years now, to get to and from medical appointments, and it has been less than perfect, to put it mildly. Medicaid hires Company A to do the bookings of these trips and handle "Quality Assurance" (No Quality, No assurance of anything except that you will get screwed over, and if you are assaulted by a driver or another passenger, you just have to SMILE AND TAKE IT LIKE THE WORTHLESS PIECE OF DISABLED SH*T THAT YOU ARE [their words] and maybe you will make it to your appointment and/or back home) Company A outsources all trips to any number of Company Bs who actually (sometimes) provide the transportation to and from appointments. They are occasionally on time, and infrequently cordial. I have been physically and verbally abused on COUNTLESS occasions, and I have reported to Company A and Medicaid, and they have BOTH told me that it was the other one's fault, and also that there is "nobody above them" that I can speak to about these problems.

* About a year ago, I was leaving my psychiatrist's office, and my ride was late. I called to get an ETA, and was treated like crap- and then it happened- without going into details, as I am still in the bullet points section here, I was physically assaulted and verbally assaulted by the driver who was definitely setting me up to get assaulted in other ways and very upset that I would not get into the vehicle of horror, so he swung at me, and took off like a bat out of hell. It took 10 calls and the threat of legal action to get Company A to agree to take that Company B off of my roster (remember, there are hundreds of ratating Company Bs) and they didn't actually do it.

* Yesterday, 10/22/19, sh*t got BAD. REALLY BAD, and this is where our bullet points pretty much end, and I tell you the story of yesterday. Remember, or realize, if you are a new reader, that  throughout this blog experience, I have never used an actual company name, clinician, nor hospital/venue name. I may not have even mentioned  my state, although that may well be obvious. If you are from the press- first of all, a sarcastic "eff you" to your people as a blanket, because I have TRIED to get you to listen, and you have FAILED....but if you are one who actually cares, by all means, contact me for more info because I want these people to stop hurting people, NOW. 

I was to go to a pain clinic for trigger point injections, and my pickup was confirmed for 8am. I was outside before 8, and at 8, nobody was there, so I called Company B to get an ETA. They were rude and said "They on way" and I said "okay that is great, but they are supposed to be here already, can you just give me an estimate of how long it will be?" they said "They on way for 8:30" I said "but I have an 8 o'clock pick up confirmed last night and you said they are on the way, so where are they on their way from, will they be here before 8:30? its cold out and there is nowhere to sit out here, but I will wait if they will be here kind of soon..." Dude hung up.
I called Company A and was on hold for several minute to get through to QA dept. I explained that I was told 8, they were told 8:30, was wondering what was going on and explained what had just happened with Company B dispatch. They immediately went to blaming me for crossed wires, instead of just telling me when the damn transit would be there, but then finally said that dispatch told them "no later than 8:30" fine.
8:30 rolls around and there is nobody there. I call Company B, they don't answer, so I call Company A and am on hold for QA starting at 8:32am. At 8:47am, car pulls up- a blue sedan with driver and 2 passengers on passenger side. Stops in middle of street, (big, main, busy street during rush hour, and there are not supposed to be any other passengers with me, but it happens a LOT as of late, and I am sorry, but usually I don't mind, but when I have important appointments and these jerks don't care about us as patients- we are all just numbers and dollar bill signs- and I spend 2+ hours in a car to get made late for an appointment, or getting home from one, with no way to get food, water, bathroom etc...its not okay for someone like me, and from the smell of it, very often not for some other folks...which makes it unsanitary and putsme, an immunocompromised person, at great risk in many ways - and it just isn't fair.
ANYWAY- when I see this, at 17-47 minutes late, depending on who you ask, and its demanded of me to put my safety at risk by getting in in the middle of said high-traffic situation, which is already dicey because driver has both driver side doors wide open, I said "Are you fuxking kidding me with this? Have somebody move to that side, please" he kept pointing to me and to door. I said "No, seriosuly. That's not safe. This person inside the car can move over, or the able  bodied person in front can come around" He refused. I hobbled over and told him that he needed to move his seat forward because I could not fit safely into the vehicle like that, if at all. He said "No. Get in now" I said " I can't fit there, you need to move your seat forward" (this was a thin and not tall man, he did not NEED his seat all the way back and in a "gangsta lean" position for any reason)
Finally, I tried to slowly get my right leg and my cane into the vehicle. I was stuck, and my left leg was still outside of the vehicle, and on the ground, and I said to him "look, I really can't fit. Please move your seat up, it doesn't even have to be that far, like 2 or 3 inches maybe" he said no, and he SLAMMED THE DOOR ONTO MY LEFT LEG  SO HARD THAT IT RICOCHETED BACK ONTO HIM. I screamed in pain and said "Are you fuxking crazy, you fuxking piece of sh*t, what the hell is wrong with you?!" and he said "Get out of the car so I can fix it" I said " The only thing wrong with the car is that you are not in it, moving your seat up and fuxking driving because my appointment is in 10 minutes several towns away!" He repeated several times abojt getting out to fix the car (which was clearly "get out so I can run you over and leave") so I wedged myself in and said "Look, you psychopath, ou just slammed my fuxking leg in the door on purpose so now I CAN'T get out of the car, so you need to FUXKING DRIVE TO THE HOSPITAL RIGHT THE FUXK NOW" and he tried again with "Get out so I can fix car" I put my seatbelt on, and this made it so that I was legit trapped  because of my cane being wedged into my seatbelt and chest and I said "I am belted in and have to get to my appointment and I have Company A on the line and as soon as they answer, they wull have your plate number and call the police, so I suggest you start fuxking driving. Whats your move?" He got in, slammed the door, moved his seat the REST of the way back so it dented my left leg, and continually plowed his arse into the back of said seat throughout the ride so that the bar would hit me and my cane would impale my chest and stomach.
Company A finally picked up and I said "Get me the plate number of this vehicle and call the polie NOW I have been assaulted by the driver and he is bullying the other 2 passengers to say that I am a violent person even though I am literally pinned down and can not move and have no violent tendencies whatsoever. Call the police. now!" Driver swerved right from the left, cutting someone off and almost getting us in a crash to pull over and speak to his dispatcher, but then he started riving again, still on phone, not hands free. Then he kept talking to the guy in the front seat, while looking only at him and then pointing at me, while turning backward, again, while driving, and talking on the phone. I gave the play by play to the QA person at Company A, who clearly wasn't going to call the pollice. She was vey nice, but it was basically "Yeah, we filed the complaint" which means JACK FUXKING SH*T and that I could have this arsehole show up with a gun and kill me, because they didn't do anything but laugh at what a funny thing he did by laughing at me and hurting me and trying to murder me....oh, did I not get to that part yet? keep reading...
So finally we get to the hospital at which I am to have my TPIs, and he stops the car. I am still pinned, but I am doing my best to unpin myself. I get my phone ready, and I open the door and call the valet guy. "Hey, valet dude, can you come here please?" he looks at me funny. "Yes, I know I am in the back, but I need some help, can you please help me, it'll just take a second!" Guy comes over and I slowly see if I can get out safely, and hit record. I explain that I have been told by Company A to take a pic of the driver, car and plate number because he has just assaulted me, and please stay with me so I can do this. He nods. Now, had I not been traumatised to begin with, I NEVER would have gone toward the front of the car to begin with, but yeah, TRAUMA, so that is exactly what I did, and this is where attempted vehicular manslaughter comes into play, because this motherfuxker slammed on the gas and tried to run me down. Valet dude pulled me out of the way and got the plate number for me.
I did wind up with a pic of the driver and the BACK plate, as he hauled arse, but yeah.
I went into the lobby and for a moment,, I was just grateful that I made it, to be alive and on my stupid, not greatly functional legs again. I decided to get a coffee, since I hadn't slept at all, and all of a sudden I just LOST IT in line. I couldn't stop crying. The employees and the manager at that cafe are ALWAYS super nice anyway, but this time, they just let me cry and explain what happened and the manager gave me coffee and a muffin on him and had info booth call security to make sure the most recent stuff got reported, and told me if I wanted lunch or something after my appointment, to just come find him and I could have whatever I wanted. Unnecessary,  but super kind.
Security had me show them approximately where I was when it happened, and I gave them the plate number and also the phone number for Companies A & B. They said they were going to pull surveillance tapes and get back to me, but I have not heard anything yet.
I went for my TPI appointment, still a bumbling mess, and they were debating whether I should go to ER or not, but decided that I did all of the right things already, so I just got my TPI and then I was picked up by someone completely unrelated to these insurance fuxknuggets.
I took a Lyft to go pick up my sick kitty's medicine, and while there, was feeling quite wobbly, even with my cane. I hadn't eaten, even that muffin from earlier, so I went to this little market next door to the apothocary to order a sandwich and a pickle before calling a Lyft back home, and when said Lyft was about 4 blocks from home, I started feeling very nauseated. (I should probably mention that since 8:45ish am, my chest never went back to feeling "normal" and it still has not)
I made it up my stairs, nearly falling at least 3 times, despite using my cane and the handrail, and when I got in, I dropped everything and ran to the bathroom and vomited. A lot. I don't know quite what, as I hadn't really eaten much in days, but yeah... mmm...biley... UGH.
I was drenched in freezing sweat. myheart was racing. I could barely even STAND without my cane, and usually I can walk around in my own home without my cane because its even terrain. I still can't do that right now. Also, I was having extreme and bizzare pains on my RIGHT side, which seemed odd to me, since the attack was on my left. I still have these pains now.
i fed my babies and gave my boy his meds, and I called 911. I had called one of my clinicians prior to this to see if there was any way to call in an "expect" but was unable to reach them- it was worth a shot. I told the EMTs that I needed to go to My Hospital because a) they have all of my info including info about the assault that had just happened, and b) I have had trouble with hospitals in my town and did not feel safe going to them. They agreed and then forced me to go to another hospital who has a DOCUMENTED HISTORY OF PUTTING OTHER PEOPLES INFO IN MY CHART so this was a bad start to begin with.
The EMT pointed out that I was describing signs of heart attack in women. This did not help me calm down. Now I know you may be thinking that this is why they brught me to a different hospitl- but you would be wrong, as the EMT didn't mention this til we GOT there and they did NOTHING to rule it out. My BP was 229/122 on arrival. My oxygen was 94, and that was only when I took a big gasp for air- they made sure to rip the thing off of me so it wouldn't go back to registering in the 80s.
They did not listen to me with a stethescope. They did not look at my eyes or ears. The did not LOOK at my legs. AT ALL. They said "squeeze my fingers real tight" (I couldn't) and they left. I started projectile vomiting again and nobody came to help. I yelped for help and after at LEAST 5 minutes or straight vomiting bile and weird white stuff, and losing control of bodily functions I wasn't even sure of which functions I had lost yet, but I was humiliated and scared... they said "what do you want?" SERIOUSLY?!!? I said, through the vomit bag I only had because of the ambulance, "Oh geez, I don't know, maybe a little help? I little dignity? maybe something to wipe my face? maybe something to wipe my arse?! I don't know what the hell is happening to me but I am fuxking scared out of my mind and my chest hurts and my legs hurt and I am scared and i don't know why this is happening or why you won't help me!" They said they would help me, but what they did was move me into the hallway so I had no privacy when they talked really loudly about finding me new pants and wouldn't let me get to the bathroom or bring me another puke bag or tissues or a blanket. 
When I finally got to go to the bathroom, I discovered that what I lost was urine and blood which wasn't what I had feared, but definitely not expected because I hadn't started my period yet, so pulling my pants down to see lots of blood was.... not something that helped my chest feel better... especially since I have several painful lumps in the left one very suddenly, which I also mentioned to the docs. Did I mention that they did not do any sort of physical exam whatsoever? not even a visual one? to rule out heart attack?
My fuxking discharge shet says that I came in with "general pain and discomfort" and that I am non-complaint with my medication. This is 100% inaccurate.
I told them that I am on the insulin pump and that I had it on all the time. I told them that I hadn't taken any of my usual pills that morning due to having an early appointment and I was going to take them when I got home, but then the assault happened, and then the MASSIVE AMOUNTS OF VOMITING happened, so yeah, I missed a day, This is not non-compliance. This is missing a fuxking dose. Also, they REPEATEDLY reprimanded me for not taking my Ativan. This was Tuesday, I was prescribed Ativan as a very occasional PRN on MONDAY and since it got sent to the non-24 hour pharmacy, I had been unable to pick it up. It was actually on my list of errands for Tuesday, BUT THEN I WAS THE VICTIM OF ASSAULT AND ATTEMPTED MANSLAUGHTER, SO FUXKING SORRY, ER DOC!! Yeesh!! 
ANY of my regular clinicians will tell you that I am SUPER complaint with my meds, I am very confident in that. Sure, I have missed a dose here and there of one thing or another. I take about 22 pills in the morning, and some of them I have to take 2 or 3 times a day. I am only human, but I am very, very far from non-compliant. As for the Ativan, you could sooner say "not yet started" than "non-compliant" 
My pain was not, and IS NOT "generalized". I am having very severe and specific pains. I am not stable on my feet.  I have fainted in my home since returning, and I live alone.
My heart feels like it is about to pop out of my chest right now, at  1:31am on the 24th of October, 2019. I have been writing this for several hours because I feel it is important to get it documented so that I can send it to people and not have to repeat myself over and over again. Having to rehash this about 18 times in the past 30ish hours has not helped the heart rate nor the breathing nor the pain, and my throat is KILLING me from all of it. 
They blamed my diabetes. My bloodsugars were FUXKING BEAUTIFUL during this BS, via their meter and my CGM... so fuxk them.
They blamed my fibromyagia because of my "non-compliance" (see again: missing one dose on one day, of drugs that I am pretty sure all do that "build up in your system" thing and missing 1 dose PERIOD would not wind me up in the hospital trying to rule out a GD heart attack.
I DID file a report with the Police Department of the town I live in when I got home from the hospital I had the TPIs at,  and the folks who run my building came over today to see if the security cameras reach out far enough to have possibly caught what happened, but they do not reach past the sidewalk, unfortunately. It was worth a shot, and I appreciate their quick response.
I know that I spoke to my nurse at my PCP's office on Wednesday, and I think I made sure I told her that the info on the discharge papers were false, but I honestly don't know, as I fainted shortly after I spoke to her. I am having major issues with My Hospital's Method of Web Contact, which is why I am writing all of this out here, so that I can just send a dang link if I ever get through. Its not the doctors' faults that the user interface is having issues.
But then again, if anyone out there in the interwebs universe sees this and knows what I am talking about, and wants to team up with me to MAKE IT STOP AND HAVE THESE COMPAMIES PROPERLY VETTED AND TREAT US LIKE HUMAN BEINGS WHO MATTER, instead of the monsters and worthless sacks of shite that they call us to our faces and behind our backs, by all means, reach out and let me know. This. Ends. Now.  MURDER IS NEVER OKAY.  /rant

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.

The stars can't shine without some darkness, right?

Maybe that is why I have always been drawn to the night sky, even though I am scared of the dark- that little glimmer...who knows?

It has been a very tough couple of years, medically speaking. I had sinus surgery in March, which I think I wrote about. The healing process was very slow and painful, and I am honestly not sure if it is over with or not at this point, as I am still having issues. I am doing my best to stay on top of things though.

After all of that, I had an MRI of my brain, with contrast. (This was in May) it shows a few tiny foci of increased T2 signal in the cerebral white matter, and a small retention cyst in the left maxillary sinus, and the bony coating over the left superior semicircular canal appears thin. Great.
This doc also ran tests for syphilis and lyme antibodies- both negative, thank heavens.
He sent me for vestibular testing and I was diagnosed with vestibular neuritis/labyrinthitis, and I have to go to see a vestibular physical therapist about once a week to learn exercises to train my brain to not think that I am dizzy/falling all of the time. It is getting a bit better, I think, and my VPT says that I am showing improvement, so that is good. my level of vertigo/headache/stability realy varies day to day, but I do my best, and try to keep up with my exercises at home.

My coughing and ENT weirdness continues, and I remain in debilitating pain, so I get sent for more and more tests. I have been exposed to so much radiation over the past month or two, it is insane. I did have a basic meta done in early October and the results were mostly in range, so that is good. Creatinine SLIGHTLY high, which is to be expected of someone with kidney disease, such as me, but only ever so slight, so actually really good.

I had a full pulmonary function test last week, and it showed that I have mild obstructive ventilatory deficit and mild diffusion defect, which apparently means that I can neither breathe in nor out as much as I should be able to. 

There are many more tests to go over, but I am too tired to type any more right now.
I will try to be better at updating this, but no promises, haha.

Dizzy, my head is spinning- like a whirlpool, it never ends....

...and it really freaking sucks!

Do you know what it is like to be dizzy all of the time? Evenn while you are sitting down or lying down? To filly "twitchy" at very frequent intervals and have no damn clue why, but to be scared out of your mind because you don't know when one of those twitches may send you toppling over onto a third rail, or into a busy intersection or make you drop a sizzling pan, or any such thing?

I do!  I know exactly what that is like, and I have no idea why and it is so scary! I hate it!

I am shaky all of the time. I sometimes seem to the outside world to be fine, but then I will have some sort of coughing attack, occasionally puke from it, and feel like hell. It sucks. It is so scary. I know. I said that. Whatever.

The mystery remains, but still I try...

Here I am again, trying to update this thing. I have been through the wringer so many times over the past several years but just over 2 years ago, I had a fall. A very bad fall. I shattered my left elbow when exiting a cafe. I did not see the step and there was uneven ground/rubble, it was just bad. My elbow was shattered, yes, but I suffered a lot more injuries and nobody looked at them because of the obviousness about the elbow. I had two surgeries on the elbow and now I have a torn rotator cuff and tendinitis in my arm (on the left, at the very least) and am in a lot of pain in many places.

I have also had episodes of random loss of consciousness since September of 2014 (since immediately after the 2nd elbow surgery) and constantly have dizzy spells, headaches, and vertigo. I suffer from chronic coughing and worsened asthmatic type symptoms over the past couple of years too.

I had sinus surgery in March of 2016 and have had a terrible cough, trouble breathing, pain, vertigo, and basically being in debilitating pain/having spins has remained and gotten worse.

I had an MRI with contrast on my head, and do not yet know the results, and am going to have extensive vestibular testing done in the next week. I am a nervous wreck, but still hopeful that I will get some answers and figure out what is going on.

I still suffer from unexplained edema and it is frustrating and painful, but my kidney function has been stable over the past couple of years, thankfully. My A1C spiked slightly after my sinus surgery because I have been fairly homebound due to worsened dizziness, headaches and vertigo symptoms. The headaches have been debilitating. I feel dizzy even while sitting down sometimes, but I am doing all that I can to "get back out there" so to speak, and move around as much as I can, and the A1C has started to come down again (and it is under 8, so that is really good)

I have a lot of trouble getting around via public transit lately because of the dizzy spells.  I have a GoFundMe page that I set up last year when my dear Missy passed away, and it still remains that I need to take my cats to the vet, and I need money for moving, but now I am absolutely desperate for money for transportation and for paying off my bed, which was in fact very much medically necessary for me to get. If I can get it paid off in the next week ($600, to make the $1000 paid in full) then I am done. If not, then I will owe $1600 with the ridiculous interest and such. Its a pretty time sensitive situation. The page is my GoFundMe page and I would appreciate any and all help received!

Thank you. 

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 can't even...

Missy died a week ago.
She was fine. We were playing. Then, she was just.. gone.
My little headbutter, My princess. The mamacat, Gone.

The story is here:

 gofund.me/Missykins

I have had 7 surgeries in the past 12 months, and as of last night, I may be losing my home come May 1st, so now, more than ever, I really need help. I absolutely hate that I need help, but I do.

I also have things on eBay. I'm doing my best. As always, there is a Paypal donation button on the top (or bottom, I don't remember) of the page.

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,

You put your left hand in....

...and hopefully it comes out feeling better, eventually?

Here's hoping, at least! I going in for surgery on my left hand in a few hours.
I am super nervous, but also very hopeful.

I am also in a lot of pain EVERYWHERE ELSE ON MY ENTIRE BODY and I would really like to know why! At least when I am unconscious from the anesthesia, I won't feel it for a short while! Yay!

I won tickets to see a band that some friends have, that I really love and have not seen in far too long, which ALSO happens today (I entered the contest before I knew I was having surgery and I won om Tuesday afternoon, heh!) and I am hoping to make it.

I think it is going to depend on whether or not I can find a friend with a vehicle to bring me and take me home. We shall see.  Fingers crossed....well, not really...part of why I need surgery, I can't move my fingers...but you know what I mean. ;-)

I did see the throat surgeon today and she says that I don't look infected right now, but we do have to keep an eye on it.  If it DOES keep getting infected, I am going to lose the gland on the left side altogether, and that is scary in and of itself, but even MORE scary because the stone on the RIGHT (which is still in there) is so large that if THAT starts acting up (heaven forbid!) there is NO way to get the stone out without taking the gland out, period. (Taking the gland out means  slicing my neck open by my throat. The mere thought freaks me out.)

Anyway, I should stop thinking about that for now. Have not come to that bridge just yet, thankfully!

I don't even know where I left off...

I went to see a headache specialist today, and left with an appointment for surgery on my left hand for Wednesday. Try wrapping your head around THAT one, eh?

Oy. Currently battling infection on December's surgical site and praying that I don't lose the gland altogether, so there's that....

I see a physiologist on Friday...

I've had an average of 2 appointments per day at least 4 days per week recently. It's maddening, really.

I miss fun. I miss music. I miss shows. I miss performing.  I miss hugs.  I miss being social.  I miss snuggling. I really could use a vacation.

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.

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.

 

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.

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!

I should probably update this thing...

I'm alive. I often wish that I had just died in July.
I go through random bouts of hysterical crying and I can't explain why.
I also go through bouts of quiet crying. Again, can't explain why.
I feel like nobody REALLY wants t9o know what happened and what I am going through.
I just wish it would all stop.
I miss something that I can never get back.
It hurts so much.

I guess it has been a while again.

I'm here. I am okayish.
There has been a lot happening over the past few months and it really has me drained both physically and emotionally.
I have suffered from various sorts of losses, and I have been in a lot of pain.
I had minor surgery on my left great toe twice in a matter of 4 days, and i still have to re-dress the wound daily.
My A1C has dropped to 6.4, but I was having chronic lows, so we changed the numbers, and now I am having chronic highs, so I am going to do a basal evaluation and we will likely change the numbers again.
I am hoping to do the basal evaluation tonight.
I should go for now.

Oh, hi...

I'm still alove.
Things have been rough, but there has been good stuff too.
I have been on an insulin pump for about a month and a half or so, and my A1C had gone from 10.9 to 8.1 or something like that.
Not too shabby.
I've been tired and run down and not eating well (not eating much at all, due to lack of money) but I am doing the best that I can.
I have been walking a LOT lately, so that is good.
Anyway, just wanted to to check in. I will try to add more substance later.

SO sick of being sick.

So the previously mentioned pneumonia never really fully went away.
I am still suffering now, but definitely more mobile... probably TOO mobile right now... I think I walked at LEAST 40 miles this week, and still had a boatload of doctor appointments.

So the other night, I went to cook something in the oven for the first time since I moved in. I set it to preheat, (empty) and less than 10 minutes later, the alarm was going off. There didn't seem to be much/any smoke, but there was a definite smell, so I don't know if it was the smoke or the carbon monoxide detector.. i hope there IS a carbon monoxide detector... I went to open the windows to find that they are apparently painted shut (the kitchen ones) I went to open the middle room ones and the top of one fell down when I unlocked it and the other one seems to be the only one in the house that opens, but like ALL of them, there is some kind of fixture on it that makes it only open about 4 inches. This means that, in the event of a fire, unless I physically BREAK a window, I have ONE exit and one exit only- through the kitchen door.

Tonight, I noticed that the middle yard-facing window in my bedroom was cracked, and since it got cold again, I went to close it, and the top fell down. I can't reach high enough to get it to close all the way, and the lock seems to be busted.
I thought I was freezing all this time because of pneumonia. It may well be that I got and kept the pneumonia because the freaking windows have been open since before I moved in and I didn't know it because I was (am) so sick.
I had the thermostat turned all the way down for the past few days, but since it got cold again, I turned it on, and now the house smells.
The hose in the kitchen sink does not come out of its holster thingy, and also fills up when I try to do dishes (this happened the first time I ever turned the faucet on, so its not like I had something stuck in there)

The shower doesn't even get all that hot. It gets warm enough to not freeze- that's about it.

I don't know what to do. I don't want to come across as rude and/or accusatory to the landlady, but I also need to be safe.

In other news, I saw the kidney doc the other day and he said that my kidney function is stable. Not better, but not worse. I'll take what I can get. He also says that he doesn't believe the scale that says I have gained weight. He says I am definitely smaller and he can tell I have been exercising.

I am going in on Monday to meet with a rep about insulin pumps and to be put on a saline pump to see if I can handle it before making my decision about it. My insurance does not and will not cover the tube-less pump, as it is not considered a "sustainable device" and I am really nervous about having a tube hanging out of me, because, not for nothing, but I am a superklutz. We shall see, I guess. I don't really know what to think yet.

My stomach still hates me. I still haven't been eating much. I did have a gastric emptying exam this week so I need to get in touch with whomever is reviewing that so maybe I can get some less-vague answers this time.

Oh, and I was thrown (physicall) out of a cab last weekend and I knew I was hurt, but thought it was mostly from being scared and a little bruised. I was wrong. Something is seriously up with my back and I need to get it checked out.

My other chief concern of the moment is my voice. I fear I am losing it. I lost my voice for 7 years before. I can't do that again. I just can't. I need to sing. I have to. I need to be able to sing relatively WELL too. Something is happening to it and I don't even have the first clue on what kind of doctor I would need to see to address this situation, or if my insurance would cover such a doctor.

It is 5:25am and I have been up since 8am, and only got two hours of sleep before that. I should probably go try to pass out now.