Edit 2: Thursday, I went in to Lovelace, got my back looked at... And spent ten hours in the ER(from 7PM till 5AM) before getting into the room... They then spent the next 24 hours wasting their time, and mine, saying "what is this?!" When I already told them it's actinomyces, aka lumpy jaw, and they already had a letter saying such... So I gave them permission to look at my records.
The next morning, i saw one of the doctors there, and the first words out of her mouth with "so we contacted your hematologist", which instantly meant that I wasted all that time and money and energy and missed needed appointments and sides through getting an unneeded IV and being put on a "no food or water"diet, for nothing... As he said exactly what I knew he would. They do not want to treat me and clean the wind because if the risk of making a wound... Cuz as I said... "We can't make an open wound to get rid of an infected open wound! Why would we replace an infected thing with an uninfected thing!"
So wasted a few days in the ER, atleast I still got my platelet transfusion :/
Atleast we're going to California, we're not doing anything here anymore.
Edit: The apartments we contacted contacted us back again, finally.... And said no, we were denied. Bye $90 for applications -flops-
So, I guess you guys deserve an update to how things have been going over the past year... Very sorry that I'm so slow on these things xD
But, I suppose I should go ahead and start things off with overall I'm alright, and am possibly going to get a chance for things soon! Though if course, low funds are seriously still an extreme issue, and will be more so in a bit..........
Atleast I've had a decent fireworks day, went to see the display here and enjoyed it even though it was hot as hell and I'll regret everything tomorrow. Lol... I'll post a status update of the newest stuff in a bit.
But, since it's been since early September from my last update! I'll go ahead and post things in order of dates...
As of the ninth, we had given up on ever getting a transplant in Denver, and they still refused to do anything with my hips, so we returned to the house in Albuquerque, New Mexico. When we got there, the place was $2,000 behind payment, and would be in foreclosure within the next month if we didn't do anything (I believe I mentioned this in my last status post, asking for help.) Though the friend(mom's old Ex) that we had hired to clean the place and pack everything and put it in the main house(we later found out someone had been squatting there for a couple days) and rented it out to had brought a friend that we didn't know about at all... Apparently, he had brought her in and decided to rent the place with her while cleaning things, ending up with her using our stuff, including a $40 candle I was saving (and apparently throwing out the $10-10000 ring that was inside it, wrapped in tin foil! For all we know, she stole it...) Plus, the friend we hired had gone through our stuff, and just threw out everything on the floor, pots, boxes of my old drawings, clothing, electronics like our Wii, unopened cleaning supplies, everything! Which is why I think the ring is thrown out... And just tossed the bags outside where they got rained on, mixed with the actual trash(we had mice after we left...) Same with the stuff in my rv, only including stuff from the table and bed, from my tarot cards and leather armor, to my velvet blanket and pajamas and sweaters, to my books and art supplies, left out on the porch in the rain. Of course, almost all of it was irrecoverably damaged.
Though, the person here brought in was deciding to buy it from us with a rent to own plan, starting with the backpay! Yet even that was ruined when she didn't end up getting the backpay together by the limit before foreclosure started (October 22nd), not wanting to deal with Wells Fargo or anything, and just straight out left, taking "her" stuff, including our $100 dehydrator, dog beds, carries towels and blankets, and other various things that weren't hers...
Understandably, we cut all ties with that family friend and his friend...
Around this time, my doctor at the pediatric hematology oncology had decided that at the age of nineteen, it was time to transfer me to the adult side of things, the cancer center, even though she said I likely wouldn't get nearly as good care there, setting up the transfer on the 22nd. Yet near the beginning of November, while I was still going to the library at day for internet, I began to get body pains, and started forming extremely sensitive ulcers on my chest and belly, aswell as a tender spot over my tailbone. After a week of this, I was finally experiencing enough other symptoms to be hospitalized (a fever of 102, nausea, etc), and ended up there... They tried many different antibiotics, and ran various tests, yet nothing worked, and I discovered my allergy to vancomycin and got like three skin punch biopsies done.
I was extremely worried about it being Chagas disease, since there are kissing bugs in the property, yet they did NOTHING. Eventually I threatened to sue them, and they did the wrong test to "confirm it wasn't that"... Mom also took her own swab and took it to get lab, finding nothing at all besides Actinomycetes, the possible cause of that all, and bizarre since I don't have any other skin Flora. Soon after, my doctor banned me from having milk because "too much iron", even though I was low on calcium, and there's no iron in not, infact, it inhibits the absorption of iron. Following this, I was in the hospital for a week, before she just dumped it all on "mono", since the virus was currently active in my system, and the ulcers had cleared up for the most part... And even though that in itself would mean being hospitalized with my immune system, she threw me out of the hospital on the seventeenth... I ended up still having to deal with mono, and no idea of what had caused the first issues, even throwing up and nearly passing out before we even got to the car.
On the 22nd, I got to go to the cancer center, and meet my new doctor, Arana Yi, who I talked with about the recent hospitalization, and possibly getting a check on Chagas, aswell as seeing what the matter was with my tailbone. She of course did nothing, followed by taking a month vacation to California, and I ended up going to a nurse practitioner in a clinic, who checked out the spot and said it was possibly a cyst, and to bathe and soak it in salt if I could. I of course did so, and it seemed to go away! Yee. I even got to get a bunch of games and get a good dinner thanks to a friend on Thanksgiving~
Overall, it was uneventful, until around the fifteenth I ended up getting extreme cramps all over my body, mainly my left shin, left thumb, and right lower arm, and gaining a fever of 105.5°F! Of course we called the doctor and began to head out to the ER... However, Arana decided that "this isn't what we deal with here, go anywhere" rather than worrying about me not having an immune system and the fact that with my disease, anything that causes a fever over 100.4°F(38°C) could kill me within hours without treatment... Definitely their kind of thing... So we decided to go to a different hospital, Lovelace, who immediately put me inpatient, giving me a semi terrible room for the night (where I experienced a "sensation loop", followed by panic... Basically everything I felt was looped back double, over and over and over. It took me nearly half an hour to calm down, and even longer for that to go away.) Though I was immediately accessed and got all the tests in and such.
The next day I was moved to a much nicer room, with two beds, so Mom could actually sleep comfortably with me... And over the day, we got to talk with people about the test results, which showed that I had tiny growths in my lungs, making them decide to get a lung biopsy (through the machine they shove down your nose... Uncomfortable.) Though they didn't say much of anything about the cramps, or swelling in those areas, even saying that it could be the same thing as before, though everything was seemingly different.
After the biopsy was done, I had pinched a nerve in my shoulder and neck, sending extremely shocking pain down my side and over my chest, which got progressively worse over time... It eventually got hard to breath, and I was given breathing exercises, eventually upping to a machine that did my breathing for me, which was incredibly bizarre... During all this time, my fever hadn't dropped, until around this point, where it dropped to 94-95°F... And they had decided that they could no longer care for me, sending me over to the intensive care unit at UNM, the place I didn't want to go.
Once there, I stayed about one night before everything took a turn for the worse, I was diagnosed with pneumonia, and ended up nearly dying twice over the 24th-26th, not remembering Christmas day at all... Apparently according to my mom, they did absolutely nothing except monitor my heart rate and keep me on that breathing machine. Not even anything for the hypothermia.
Afterwards, I was completely out of it, it taking me nearly a week to recover any proper sense of myself, and over that time, I was given a round of low dose chemo therapy due to the infection risk... Though after that, we had been scared of a 7q clone due to a doctor mentioning he didn't like what he saw on the last biopsy, followed by Mom's research since he started we should take it up with our doctor, which would've meant I had a one in two billion disease with a chance of survival of seven percent...
Over this time though, I was stuck in the hospital recovering from everything, my skin peeling, not being able to eat anything, not being able to move much at all, losing nearly 70 pounds in weight in both fat and muscle... My cramps had eventually gone away aside from the area on my tendons in my right arm(which they checked for any clots or anything, only ending up saying there was a mass there)... And I got to leave on my birthday, the 25th, in which I instantly insisted on going to my favorite sushi restaurant, which I enjoyed muchly.
Though nothing got solved and they never discovered the cause of anything at all, giving me noxafil, talking me off my much needed chemotherapy (iron levels are four times that needed to kill a healthy six foot man), to take for the next six months atleast. Of course the insurance fights us every time we try to refill it... They also gave me an IV antibiotic for two weeks, making me go in every day for the transfusion...
Around this time, the area on my tailbone had begun to reappear, with it's incredible sensitivity to any kind of pressure. I was stuck inpatient for another week due to a high fever, most spent in an ER room, followed by another two weeks of IV antibiotics... While inpatient, we asked Arana for a biopsy of my bone marrow, since we were worried about the 7q clone... And she said that we should ask for it from the inpatient doctors, since it'd be quick and easy to. Yet when they called her for confirmation on that, she denied ever recommending a biopsy be done, and it got denied, me being released since I got better within a couple days and nothing growing in the cultures.
Eventually after a bunch more hounding on Arana for a biopsy of the marrow, and my arm and tailbone, she eventually agreed to the bone marrow biopsy, and getting my arm an MRI... Getting there for the bone marrow biopsy, I was expecting to get knocked out for it, but since I had water, they decided to cancel it... After a ton of hounding again before I left, having sacrificed the entire day to get there, I got in to do it... Awake... Yes, a hand crank rod with a mini round saw at the end, drilled three or four inches into your hip bone, through the skin and everything, awake. Luckily I was still given pain meds and anesthesia, but it still hurt like hell and felt beyond bizarre. Though after a week, the results came in and I no longer had the 7q clone, infact, I didn't have anything! The newly grown "hypercellularity" of 90% had dropped to 5% and everything good had been wiped out by the chemo she ordered, including ANY 7q, which regulates your body's defenses against cancer... Meaning at this point, or technically back in December, I became a ticking time bomb for creating cancer anywhere in my body at any time, unchecked, and impossible for my body to fight against.
As for the MRI, she had completely forgotten that I am deathly allergic to the dye they use for it, and didn't get a replacement, or the premedication to stop any reactions... And so they went ahead and got a picture, saying that... Oh my, there was a lump! The infectious disease doctor I had seen earlier about it felt it and just said tendinitis, but I called bs, still do...
Aswell as those things though, by this point I had given up entirely on UNM being of any help with my disease, since they didn't even let me get hip replacements, even though by now, a year had passed since I first requested them, and even with their fear of slow healing, I would've been perfectly healthy and fixed by then, unbothered by any hip pain and able to return to a mostly normal life, rather than being forced to use a cane/Walker 24/7 and a wheelchair every now and then. So we had done our research, and set our eyes on the Mayo clinic in Rochester, Minnesota, or the City of Hope as a second choice. And of course, started requesting the transfer to Mayo.
Now... After the tests I was able to see Arana Yi again, and she directly lied to my face about the results of my biopsy... She stated that the results just made my MDS a higher risk to get worse, when that wasn't the case, and it developed into a higher risk one already, having become a type of cancer itself, making it to where it would be near impossible for anywhere to accept me for treatment, and made even her write me off as dead. And bringing up Mayo, she started the lingo of "choose a place to move where you'll be comfortable" and sticking to it, refusing me any more treatment from then on aside from transfusions... She didn't even seem to think about getting my referral done... And though I began to ask for a different pain medication, worried about getting addicted, since it was an opioid and addiction runs in my father's side, it went nowhere.
At this point, I had completely given up on Arana being anything more than a doctor doing as little as possible to get as much money as possible, like say the denial of changing from oxycodone as my pain med because the pharmacies paid her off like they do for many doctors nowadays... So, I did the next thing that came to mind, and requested to see another doctor, Dr. Faro, the one who had seen my boost before and said it was bad news. After about two weeks of fighting with Arana, her "being disappointed" and eventually straight out calling me rude for switching doctors, I had to go through the other hospital staff and management to get my care transferred, since Arana wouldn't let me go and refer me herself.
Meeting Dr. Faro, I was happy, since he actually listened, and started the referral to Mayo, aswell as telling me the truth about the lack of 7q and the risks there... He also got me a new MRI of my arm, revealing it's size and such, followed by a biopsy, which sadly showed nothing but Necrotizing tissue, ruling out cancer, and oddly not showing any signs of illness like bacteria or viruses or fungi... And got me a new x-ray of my hip (they're way worse), CAT of my lungs and heart(showing that there's still a mass in my lungs), aswell as getting me new medications to help. Bactrim, which helped the spot on my arm in the long run... And... An antibiotic that I had gotten before, a black box medication that can make you go blind, insane, or have your tendons literally explode up to six months after you take it, it getting more risky the more you take. I didn't recognize it, him having given it to me without any discussion whatsoever, and took it a few minutes before my mom got curious, since I was only given a three day supply of it, followed by me throwing it up with my other medication... After discussing this with him a few days later when I got him to see me, he argued that it was harmless, but eventually gave in and gave me amoxicillin instead.
Later on in the month, the spot on my tailbone had gotten much much more tender, and had started flaking... Though after a bit, it had opened and started draining! Of course, worried by this, I immediately told the nurses at my next appointment that it had opened, and that I wanted a sample taken... Luckily, Dr Faro was worried enough, and actually got it done that day. The results were that what had opened was an inch deep two inch wide pocket of infection with tunneling... And guess what the sample said? Actinomyces, aka lumpy jaw. The same thing Mom had discovered on my skin months before that they completely ignored... Hell, the thing might be causing the problems in my lungs and arm, too, but we don't know, even now... So discovering this, Dr. Faro decided to set me up for an inpatient stay to get everything tested on the fast track, and I was there for a week, getting the biopsy on my arm done, and them denying any kind of treatment of the new open cyst on my back due to not wanting any open wounds... Yeah, makes sense, don't treat an infected open wound because you might make a slightly bigger clean easily manageable open wound. This of course also meant excising the area on my arm was out of the question aswell...
So, we left the hospital once more, with no new information pretty much.
On the first, I realized that I had become addicted to the opioids that I take... Sadly, such addictions are deadly, and require months of hospital care to stop... How I knew? If I don't take it, I experience body wide cramps, achy bones, extreme chills, tons of sweating, and a high fever of around 102... Infact, due to it I got admitted to the hospital for another couple days followed by the two weeks of IV antibiotics, because once admitted, I didn't show any signs of being sick, because I requested the meds from the hospital when I needed em. But, such symptoms will get worse and worse, so bad they can kill, over a couple weeks, and stay for a few months at that peak, up to half a year, before you can break the addiction.
At this point aswell, I got contacted by UNM about the referral to Mayo, stating that my insurance refused... Which, I obviously knew, there not being Medicaid up in Minnesota, and that they shouldn't have even bothered with contacting the insurance, and contacted Mayo directly.
The spot on my back was getting packed and treated, though something it had made a second spot on my right butt cheek, making it impossible to sit at all comfortably... And now, Mom had gotten an offer to go to her work in California once more, a worse package, but still an opportunity. We could take it, and be in a beyond extremely tight financial situation in California, but have a chance with City of Hope. Of course, we would prefer the Mayo clinic, and hounded the hospital to do something with that, mom getting interviews and such for things up there in Rochester.
However... Things entirely fell through... After a second interview, the company in Rochester panicked about Mom asking about continuing education, since it's a common question in the field of science, which she was applying for... They never contacted her again, and hired someone else. Following this, later in May, the hospital had contacted... My insurance again... And after more hounding, they gave up, and handed me a piece of paper, saying "do it yourself", wasting our time since around December/January when we decided first to look into it. And after going back and forth, I got my records sent up there, and was going to work it out! Yet it took slightly too long, and, well, mom had to sign the contract to go to California...
So, that's the newest news, we're forced to go to California. We can't afford a place more than $1500 a month, need a two-three bed two bath place to even keep our sanity, aswell as make it plausible for my getting treated(I need a bathroom and bedroom able to be closed off from the rest of the house, and mom and my brother cannot share a room without him driving her literally insane(I've seen it, naked mom holding two knives standing at the door of the small house screaming at Oren to leave her alone because he hadn't let her sleep in weeks, with him refusing, even with the threat)), and be within an hour of the nearest hematology clinic or the City of Hope in LA, aswell as near enough mile wise to Carlsbad where Mom will be working, near San Diego, to afford the gas to actually make it every day. We have three cats, and will not give up any of them, making it incredibly hard to find a good apartment, and there one apartment we found that fits the bill denied our application because our house is delinquent, without even reading the reason why, or the fact that with the bonus to move, we could actually bring it current enough to put it up for short sale and fix mom's credit (of course at the cost of any kind of loan/mortgage in California)... They said they'd review it again Monday, but didn't get back to us then, even though we paid a hundred bucks just for the applications alone.
On the first, I went to the wound doctor again, and apparently the area on my back had tunneled and made another connected open wound to the left... So she wants me to skip everything UNM and go to the Lovelace ER some time this week to get it surgically opened and cleaned out. Even she doesn't trust UNM enough...... But that's the next thing on the list... ER/inpatient at Lovelace to get surgery on my lower back before we move to California before the end of the month.
Everything was hell, nothing was done, and we're moving to California and need any help we can get moving, money, or physical help. I know a lot of my friends are over in that area between Las Angeles and San Diego, so for once, I could likely get actual physical help, perhaps someone to keep an eye on me 24/7 following the transplant (a very simple requirement for it to happen).
If you read this far, thank you for actually caring enough about me to. -hugs-
I need to get some sleep, I have a long day tomorrow... Good night
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