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 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. 

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!

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.

Sick of being sick.

I am having so much trouble moving... physically and in the finding a place to live sense.
Last night, I went to a show with some friends and on the way in, I sprained my right ankle (the one I am in PT for to begin with- and the sprain was diagnosed by my physical therapist today) and about halfway through the show I got so nauseated and dizzy and I felt like something was stabbing me in the lower left side of my stomach. (the stabbing pain also happened Sunday morning while I was at church with some friends)
Today, I ate a small, plain-ish sandwich and felt horrible.
Tonight, I am attempting some chicken and angel hair... and that will be my last meal for a while, as I have to start prepping for Wednesday's colonoscopy, which will be done under full anesthesia.
I am in so much pain.
I don't know what to do.
I have very little time in which I will have a roof over my head too... I am searching every day and getting nowhere. No matter what, it is going to cost money that I don't have. If I wind up on the street, I will die. I can't lose my kitties. I am so scared.
I really can't even express it properly.
I am forever grateful to the people who are trying to help me, in every sense of the word.
Thank you.
If you can help, financially, you can send donations via Paypal to curiouspatient@gmail.com or use the "donate" button in my previous post.

Help needed.

So obviously, I have a lot of health issues.
That has been well-established in this blog.
It is getting worse, and the money situation (I am on Social Security disability and I make less than $9,000 a YEAR) has gotten worse with all of the med changes and other related expenses.

Now, I am being evicted for no good reason.
I am fighting it to keep a roof over my head until I find a new place, and searching for one like crazy, but I need to get out of here, and fast.

My landlords are crazy and abusive in many, many senses of the word. I am not safe here.

I am looking for contributions, because I will likely have to pay either a security deposit and/or a realtor fee (last resort- I am looking to NOT go through a realtor) I can't do it alone.

If you are able to help in any way, I would really appreciate it. I made a paypal button and hope that it works.

You can also just send a "gift" to curiouspatient@gmail.com

I really hate that I am doing this, but I am pretty much having a nervous breakdown and I don't know what else I can do.

Thank you,

A Curious Patient

I guess I never finished that already-long entry a while back...

I probably won't really be able to finish it now either, but let us see...
I had my stomach emptying test and my endoscopy.
I do have gastroparesis and ulcers and some other stuff that they weren't able to see in the endoscopy because we hadn't gotten results on the emptying test yet when I had the endoscopy, and even though I hadn't eaten in about 18 hours, I still had stuff in my stomach. Freaky.

I was doing relatively okay for a while... going to physical therapy for my right foot, going to rehearsals, walking a lot... I was being pretty dang active, actually.

Last Saturday, I woke up so nauseated. I threw up several times and I got really dizzy (thankfully, I was home.. though, alone) and wound up calling someone for a ride to the hospital. I should probably also mention that I have ballooned up about 15lbs in a week, even though I was active and not eating a lot (and eating pretty healthy things, mostly)
I was there from about noon to 11:30pm or so. They gave me IV fluids, 2 litres, I believe, yet they thought nothing of the fact that I didn't desperately have to go to the bathroom. They also didn't acknowledge when I told them that there has been a colour and odor change when I go to the bathroom (urine and feces) which... I don't know if it is important or not, but it freaks me out, for sure.

They did an abdominal ultrasound and they mentioned gallstones, but no need for surgery at the moment. Then they made me drink a contrast, which they said could mess up my kidneys even more, but that they needed it for a CT scan that they MIGHT do... then they did the CT scan and told me I have ileitis and Chron's disease and they gave me prescriptions for heavy antibiotics and sent me home. Thank God I had some friends willing to pick me up, as I was still crazy dizzy and nauseated.

I've been on Cipro and Flagyl since Saturday and nothing really has changed. Well, I haven't been eating, because I've been puking everything up. Until Wednesday, my diet was water, grape juice, and tea. Wednesday, a friend brought Ensure to rehearsal for me, so I have that, and I still have some for if I need more. I did have a turkey burger and a few fries on Thursday, then I had some risotto when I got home. So far, no more puking.

I went to physical therapy today and my PT agreed that I am WAY more swollen and said I need to get checked IMMEDIATELY. I'd spoken to the renal clinic just before, and they told me to come over for paperwork to get blood drawn, so I did that after PT and now I play the waiting game. My stomach is still in a lot of pain. I am getting a lot of leg cramps. My urine output seems less. I am getting headaches and my balance is way off.

I just hope someone can get me some answers and I can get back on the road to feeling better.

Oops?

It seems that the reason my blood sugars were so high (and therefore my A1C took a hike) is that I was given the wrong chart of how much Humalog to take, and therefore was taking an insufficient amount several times a day.
I am on a more accurate scale now, and the sugars are on their way to the right place now. Yay!

I have stayed under 230lbs for a couple of months now. I am happy with that, in that it isn't 265lbs, but very frustrated that I am not losing more, since I don't eat very much, and I exercise a LOT. There is still a lot more edema than there is fat. Like, I am so swollen that I can't put my arms all the way down- they just pop outward and it makes me VERY self-conscious.

I have been taking Turmeric supplements to see if that would help. I don't know yet if it is.

My sleep schedule is still basically non-existent. That bothers me. I basically don't use my CPAP machine because it really seems to make matters much, much worse.

I am at a loss. At the same time, I keep trying. I gave my endocrinologist a form to apply to a program in Maryland that deals with un-diagnosed diseases. It is a long-shot, but I figure it is worth a try. The worst they can do is not accept me, and I'd be no different than I am now. If t hey do accept me, MAYBE I can get some answers. Til then, I will keep searching.

I am supposed to see a Neurologist sometime soon. I should check on when that is...

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.

So let's see...

Last week, I had a kidney doc appointment. I got seen 2 hours after my appointment time, and only for about 15 minutes, most of which was spent with the doc typing. I left to go to the blood lab and wound up having to sit down for a while and eat a liquid lollipop because my blood sugar had taken a nose dive. Got blood work done, and left.

On Thursday, I had an endocrine appointment. got praised for doing well and having my A1C drop several points. I have a ways to go, but am back in the single digits, which is good. More blood work.

Friday I went to New York City for a show and spent the night wandering around. I was walking almost the entire time between 12:20am and 8am, with the exception of about an hour or two total. I mapped it out a bit and estimate that I walked just less than a marathon. When I got back to Boston, I threw up blood at the train station and was rushed to the hospital, where I was treated like absolute shit. I was discharged with Ranitadine, Protonix, and Zofran(?) which was not covered by insurance and cost about $70. Eep. I spent the next couple of days pretty much unable to move, and had another swelling episode. I stopped the Protonix, as that had made me gain weight in the past... I am still swollen though, and in a lot of pain.

On Wednesday, I had an appointment, and then I went to visit a friend of mine. I was fine, albeit a bit tired, and then all of a sudden I had a massive stabbing pain in the lower left side of my stomach and I could barely move. I felt like I had to pee, so I went into the bathroom. Nothing. Here I am, the girl on 2 diuretics, unable to pee. This is not good. My friend insisted on calling an ambulance. They came, they carried me down most of the stairs, and then they dropped me. No, I am not joking. They picked me back up, and got me into the ambulance and took me to yet another hospital. Luckily, this one treated me like a human being. It was almost freaky. They did a bunch of tests. It was scary, not gonna lie about that. It was also very odd that they wanted me to umm... put the thing in for the pelvic ultrasound BY MYSELF, but yeah, that wasn't about to happen, as the way I am swollen I certainly couldn't bend at the angle they had me at, and also, hello... abdominal pain!?!?!? They did an abdominal and pelvic ultrasound, a regular pelvic exam, and an abdominal CT. They said that I had blood in my urine, a cyst on my right ovary, and a small kidney stone, as well as probably ligament strain.

They gave me a prescription for oxycodone and discharged me. I still haven't filled the prescription because I can't get to the pharmacy. I haven't eaten since the very small amount I had at about 7am on Thursday. I've got nothing to eat or drink in the house, so basically, I am screwed.

I guess I should updte.

I had my surgery on my left eye on 12.30.09.
The doc used a different type of laser than the other ones had been, explaining that it was going to give the ability to get more pin-pointed areas.
It was way more intense, it hurt like hell, but I got through it.
I wound up having unexpected oral surgery a week later (1.5.10) because I woke up choking on a filling and a piece of my tooth, I would assume. It couldn't be saved, so I lost a molar. It took a very long time to stop bleeding, and it still hurts a bit. I go back on Tuesday to have the stitches removed and hand over my partials so that they can add the now-missing tooth to it. :(

I had an appointment with the diabetes nurse today. She said that although we aren't exactly where we want to be, that I am going a great job at keeping track of stuff, doing the right thing, and whatnot. She said that 50% of my bloodsugars are where we want them to be, which is MUCH better than they used to be.

Today, a urinalysis was submitted, and blood drawn to text electrolytes, lipids, magnesium, A1C, thyroid and basic blood count.

I hear that my echo-cardiogram shows that whatever is causing this edema is NOT heart failure. A small comfort, that. Still don't know what it IS. I mean, we know I have kidney disease, but I was told that it COULDN'T cause the level of edema I have. I can't catch a break.

Today, at my nurse appointment, my left eye started acting a little funky. By the time I was done with the lab tests, it was really taking a toll on my line of vision. I went to the ER at the hospital my retina doc is at, and saw the fellow. I was informed that there was no new bleeding (good) and that this was scar tissue from the surgeries and it just moved (not great) and I'd just kind of have to learn to "deal with it" or something. Well, doing the best I can- it isn't easy, but I am trying to stay positive at least a little bit.

I am so worn out. So tired. I need answers, not more walls to climb.

It has been a long couple of weeks.

Retina appointment on 12/16.
Improved 3 lines on the right and 2 lines on the left.
This is an improvement back toward my ORIGINAL crappy vision, not toward 20/20 or anything, but hey, progress is progress, right?
The bad news is that I do need more surgery on the left eye. Soon. "Before it starts bleeding again" sort of thing.
Also, the loss of peripheral vision is sort of a trade-off to keeping/fixing my central vision. It will not come back. That saying about how "you don't know what you've got til its gone" is so very true. I had no idea how useful it actually was. I mean.. I know its useful, but like... I don't know how to word it, do you know what I mean??

The next day.. I had 3 appointments right in a row: Nutritionist, Endocrinologist, and Echo-cardiogram. Was a full day. Pretty positive in most regards. I mean, the issues are still there, but we are working toward trying to figure out what is going on, get my appointments co-ordinated and such, and maybe get me working toward an insulin pump.

There is a LOT more to write, regarding more tests and more trips to the hospital, but I am still fighting off this bug, so I am going to stop for now and try to get some sleep.

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.

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.