Medical Molestation? Silence Ends Here!

I figured that I would concisely write this all out, before posting much else. It has taken me weeks to work the nerve to write any of this.

At first I sort of talked about it to my best friend...


I figured that I would concisely write this all out, before I would post any videos, or release the disturbing audio of the police refusing the help me... the police actually going as far as to blame me that I had not taken proper steps immediately after the assault to cause penalties towards the doctor, or to actually receive help... despite every thing they said I should have done, I had done within 48 hours of the ER release--and I felt like crap physically and then emotionally, too.

 WARNING: there are some dark things and subjects ahead, reader discretion is advised.

At first I sort of talked about it to my best friend...

Brackets indicate things that have been added during editing. [previous unrelated conversation....]



[10/12/2014 9:34:44 AM] Neptune Fallen: OKAY Maria Sr [the mother of the father of the family I am renting a room from- she has taken residence up in our living room for the last month ugh], she kind of like speaks to me in Spanish expecting me to understand, but she is nice I guess.... sort of...

[10/12/2014 9:35:59 AM] Neptune Fallen: She is a total bitch in other regards. She is not accepting of gays or a lot of other things, and she treats people really mean. She was guilting Tony [the dad of the family I live with] for not helping her with things because he had work, like "Oh why wouldn't you help me? My nephew did (who has no job) why can't you?"

[10/12/2014 9:36:24 AM] Neptune Fallen: So when she came here I saw a lot of her bitchy behavior. But she's been nice to me.

[10/12/2014 9:36:29 AM] Neptune Fallen:  Kind of like M***.

[10/12/2014 9:36:46 AM] Best Friend: Watch how people treat others to get a good gauge of them

[10/12/2014 9:36:53 AM] Best Friend: You can't just look at how they treat you

[10/12/2014 9:37:00 AM] Neptune Fallen: So like 30 min ago, I went to get some water----she treats **** the WORST [person who is step child to the father in the house.]

[10/12/2014 9:37:15 AM] Best Friend: If they're undeservedly mean to them, then they have the capacity to be undeservedly mean to you.

[10/12/2014 9:37:22 AM] Neptune Fallen: And she was on the phone talking to people, family I think from the way they were talking.

[10/12/2014 9:39:01 AM] Neptune Fallen: And I had 3 [empty water] bottles, I went to fill up the first one, and after I was like 90% done, like a shot in my back it hit and I let out a gasp. My legs went out, I couldn't stand, they wouldn't support so much weight, and I grasped at the fridge as I tried to support as much weight as I could, but that wasn't much, as I went to the floor.

[10/12/2014 9:39:50 AM] Neptune Fallen: Finally in pain, I was lying on the floor, trying not to cry out in pain, hoping that she wouldn't notice. I kept glacing over, but she seemed absorbed in her conversation, looking the other way. I had fallen down pretty quietly. [I purposely bit back noises of pain, and sliding to the floor hoping that she wouldn't notice what was happening.]

[10/12/2014 9:39:58 AM] Neptune Fallen: It took a lot of effort.

[10/12/2014 9:40:50 AM] Neptune Fallen: So finally when I glace [back] over [in her direction] I noticed she was glancing my way, still on the phone, speaking in Spanish to people, still sounded like friends or something, and finally she gets off and tries to get me up.

[10/12/2014 9:40:58 AM] Neptune Fallen: I say no, no no... [trying to wave her away.]

[10/12/2014 9:41:41 AM] Neptune Fallen: She keeps trying to grab my arm to get me up, but I shake my head, I can't... Then I say "my walker", and make a gesture. and she understood. She'd seen me with it yesterday.

[10/12/2014 9:41:58 AM] Neptune Fallen: So she goes and grabs it, and she helps me up, actually grabbing my arm and helping me up.

[10/12/2014 9:43:04 AM] Neptune Fallen: The second person in the house, next to A*****, to actually help me like this, but she was more honest and concerned. She spoke words of comfort and urging as I cried out in pain and tried to get to my room. She helped to push my walker along.

[10/12/2014 9:43:44 AM] Best Friend: That's nice of her

[10/12/2014 9:43:57 AM] Neptune Fallen: So I get to my room, let the walker go to grab onto things to crawl into my bed and she stands there for a minute before I say thanks and give her a thumbs up, despite panting and whimpering.

[10/12/2014 9:44:21 AM] Neptune Fallen: She then shows up with the bottle I'd filled and she watches as I down like 8 pills. [Yes, all at once...]

[10/12/2014 9:44:26 AM] Neptune Fallen: I know.

[10/12/2014 9:44:49 AM] Neptune Fallen: Then she leaves before I can try to ask about the other two bottles... which I feel bad asking for, lol.

[10/12/2014 9:45:11 AM] Neptune Fallen: And she is knocking on K's door, and then K shows up at my door and says, "What happened?"

[10/12/2014 9:45:57 AM] Neptune Fallen: "Oh, I just fell at the fridge trying to get water," I say, like it is nothing, which I feel it is. I fall all the time. I fell twice yesterday!

[10/12/2014 9:46:13 AM] Neptune Fallen: "Well the ambulance is on its way." [K says, and I am thinking immediately ........shiiiiiiiiiiiiiiiiiiiiiiiit...."

[10/12/2014 9:46:38 AM] Neptune Fallen: "You called an ambulance? Oh fuck!" I reply before I can think. [Because before I thought about, am I hurt? Why did I fall? Do I need other meds? I hear ambulance and equate that to "oh fuck", and it usually comes out of my mouth before I can stop it.]

[10/12/2014 9:47:14 AM] Neptune Fallen: "I didn't mean to say that... I'm sorry... oh god... just... ugh," and like seconds later she moved out of the way cause there was a paramedic [already who had arrived and was in the hallway. Maria Sr. must have called 911 before she helped me up, and they were en route as I tried to get to my bed, but I don't know Spanish so I couldn't stop her and say- Yo I don't need paramedics.]

[10/12/2014 9:47:46 AM] Best Friend: >.<

[10/12/2014 9:47:53 AM] Neptune Fallen: "What happened?" [The paramedic who first approaches my bed asks,] and I had to explain everything. According to what he had [heard], I fell, was unconscious at the fridge, and he was urging me to go to the hospital.

[10/12/2014 9:48:31 AM] Neptune Fallen: And I was like," no, I have chronic pain and back issues, I see Dr. Herman at VCMC, I am waiting to see a specialist in L.A. I know like all the ER doctors at VCMC, they'd be annoyed to see me."

[10/12/2014 9:48:58 AM] Neptune Fallen: "Well you shouldn't not go to the ER because you are afraid to upset the doctors," he said.

[10/12/2014 9:49:40 AM] Neptune Fallen: And I facepalm, "Well like I've been told like I shouldn't come back." He asks normal questions, anything new, did I hit my head, [lose consciousness, nausea, feeling in limbs- which I normally have issues with lack of feelings] etc etc.

[10/12/2014 9:50:00 AM] Neptune Fallen: Again [he] urges me to come with them to the ER.

[10/12/2014 9:50:43 AM] Best Friend: If you went to the ER everytime you fell you'd be at the ER more than you're at home

[10/12/2014 9:51:47 AM] Neptune Fallen: I am like "This happens a lot, like all the time. She is new to living here, and she doesn't speak English so I couldn't explain that to her." 

So I sign a release that I am ignoring medical advice, and I also asked about my room, and he said that it could be cleaner but it's not like condemnable like Tony's mother's house way (which is what Tony was worried about), so after they left I picked up.

[10/12/2014 9:52:19 AM] Neptune Fallen: I also told them that I kind of need things near my bed to GET into my bed cause I fall and need to lift myself into it a lot.

[10/12/2014 9:52:34 AM] Neptune Fallen: and ROFL at your comment, esp at how long they take to see people. [VCMC takes hours to see people at their ER.]

[10/12/2014 9:53:51 AM] Neptune Fallen: So they left finally, and I was alone, I thanked Maria, knowing her intention was good, and she helped me a lot with the walker and getting to my bed. Christie I was able to ask her to fill my other water bottles, and then finally I explained this to you.

[10/12/2014 10:13:08 AM] Neptune Fallen: I might fall asleep cause I took so much pain medication




So sometimes I get pulled into the ER without mine wanting to be...  I wanted to talk about what had happened when I went to the ER recently, but it was just easier to talk about the mishap with the paramedics. I grabbed my My Little Pony Princess Cadance plushie and cried.
So when you are left helpless, scared, alone, weak, and you cannot do anything, what are you supposed to do? I've called paramedics for myself on occasion, the following are excerpts of a conversation with a best friend of mine since 2006, and his wife has also suffered horrors in the in the hospital and health care system.


11/30/14 8:37PM begin conversation


Neptune Fallen to Bird:
So when I went to see the big name surgeon in downtown Los Anegels I had to go and get my medical records from one hospital, and I was like okay.... I got all set and psyched to get this done, I sat down and asked well how much would it be for the last, say, maybe 6 months? I had over 13 hospitalizations, and it was well over 100 pages of notes. So I was kind of stunned that I didn't really register being admitted and staying that many nights in the hospital that much in the past few months. So I suggested perhaps, maybe 6 months? It went down to perhaps 70 pages... So I just requested information on the last few hospitalizations that specifically regarded my back.

I am actually overdue for a stay it seems! [after I had this conversation I have been admitted to the hospital overnight once, and gone to the E.R. six times on three different occasions.] So, have I gotten worse than your birdy? I am so lmao right now. I've gotten so pathetic rofl.

Bird to Neptune Fallen:
My birdy has her own set of issues right now >.<

Neptune Fallen:
Oh no, what's been going on now?

Bird: 
Nah, you need to have a lot of strength to deal with all you have.

Neptune Fallen: 
It is just so funny because people think I exaggerate when I say I have NO idea how many times, or much, I am in the hospital, I just know that it is "a lot".

Bird: 
And we dunno,a while ago she got sick with something like the flu, and now she has a lot of problems thinking. Gets headaches, stutters and cant think of words. other day she couldn't understand the words i was saying

Neptune Fallen: 
omg... that's not good... I was having issues like that for a while, but it was related to my seizures--- Still trying to get that resolved.

Bird: 
Yeah, not sure what is going on. she doesn't have insurance, so hasn't seen anyone. she forgets a lot, gets confused easy. will get dizzy randomly..

Neptune Fallen: 
That sounds like something neurological. I mean, I don't technically have insurance, but I see doctors all the time. I have medicaid which is a state-paid program until I can get medicare which is the federal program recognized that I am perma-disabled.

She doesn't have medicaid?? or a county-run program? With Obama-care she should qualify for medicaid, it is pretty easy now. It used to be like, you had to have a kid.
If not, maybe you need to look to move to another state where she can get care...

Bird: 
She got rejected. Couldn't prove she didn't have a job, and now she's just scared of what it might be, so won't reapply.

Neptune Fallen: 
But I was having [oh and am still having!] headaches, issues with my sight, dizziness, lightheadedness, feeling that I was falling, trouble speaking, trouble comprehending, and seizing, and I have a lovely, er have a couple lovely cysts in my brain, too though...

She has to reapply. [I had to, several times. I reapplied for food stamps yesterday again. The worker I have has gotten used to me to the point he was sort of blank expression-ed that somehow the feds changed my address from 16 to 15 so I was not notified of the cancellation of my food until the date came to get it, and the food money wasn't there.]

Bird: 
She won't. [It can take hours to apply each time, often workers can be rude and course, and it is very inducing of anxiety. I know from experience.]

Neptune Fallen: 
You can only reapply insisting that you don't have a job. Esp with such serious symptoms she could be seen at an ER ASAP to be honest...

Bird: 
a lot of those symptoms she has. and trouble breathing too... she wont go :(
I know. and she'll just freak out.
yeah, its hard

Neptune Fallen: 
It's why I am not on SSI yet; it's scary and hard.
But basic health care like the ER? There have been a handful of times in the past couple years that my life was saved by me going to the hospital...
 ...more than a handful or severely hampering my health

Bird: 
Yeah, but she will refuse. last time she went to the hospital they nearly killed her.

Neptune Fallen: 
How?

Bird: 
left her with a broken hip sitting in the waiting room of the ER for 7 hours.

Neptune Fallen:
She wasn't seen as a priority?

Bird: 
Guess not, doctor seemed to think she was faking it until he saw an xray.

Neptune Fallen: 
I mean, I've been to a shit hospital, too.... so I know my risks, but I've learned I have to speak up sometimes, like when I needed my gallbladder removed ASAP. But what happened, actually I could see it being believable. When I needed my gallbladder removed I had to go to a different hospital to get surgery for removal because it was so urgent. I had already been in hospitalized at VCMC for like a week previously a couple days previously and they said it was just stomach upset! 
They began to ignore me, Sib began getting their attention saying that a doctor had said I needed surgery immediately...He harassed them. But it was the right thing-it got the job done.
I was screaming in pain, and the thing nearly burst infectious puss all into my body. They got it out like a few hours within due time.

Bird:
That sucks: :( I don't trust then at all either anymore. And the damage is done with her. She keeps saying she'd rather die than go to a hospital again..

Neptune Fallen: 
I've been there... feeling like that. VCMC is like that.The ER can be worse than home, why do you think I haven't gone yet? [At this point in time I was having seizures several times a day, many were knocking me unconscious] It services so many people, so many uninsured like me, that the wait is usually several hours until you see a doctor.

Bird: 
Ugh

Neptune Fallen: 
Yeah, I've traveled hours away to be seen at other ERs Maybe you need a different hospital. [I wound up going again to Santa Paula to fix the seizures.]
I would bet you that is 90% the problem. It pains me to know that all of that is going on.  ...last time I went to the nearest ER the doctor finger fucked my ass with unnecessary force.. [This was the first time I mentioned it, I tried to down play it humorously...]

Bird: 
wtf!?

Neptune Fallen: 
Maybe sexual thrill? letting off steam? getting off on making me cry? I dunno
he fingered my ass...
with more than one finger... 

Bird: 
why?

Neptune Fallen:
a rectal exam may be professional with one single gloved finger
...like single finger one insertion, but he didn't do that, and it wasn't gentle [the link shows 2 fingers lubing, 1 inserting]. I have no idea.
I'd blocked it from my head until now actually.

Bird: 
why were you getting a rectal exam anyway? was it even necessary?

Neptune Fallen: 
It could have been [Usually it might be done if there is NO history to suggest back injury, but I have a long history and even a scar showing that I have had spinal surgery, and the paramedics came and I had no joint reflex, and couldn't get up!], but he really thought that I was faking my back pain and leg weakness.
I collapsed in my house, my legs gave out, and I couldn't walk, so that was why I called 911
He though I was trying to score pain meds I think.

The nurse was a bitch, too, she didn't believe that I hadn't taken my pain meds since the night before, so when he came in, looked over my chart skeptically, glanced at me and was like, "So you're in severe pain, let's give you Tylenol."

I replied, "I have my pain medicines with me, I just didn't take them because I didn't want to contraindicate anything from here... can't I take something that might actually help me?"

He said, "No. Don't take any of your meds, the Tylenol will help. Then we'll give you an MRI." Then he smirked at me, like the MRI would show that my back was perfectly fine.

By this time I had been crying and screaming out in pain for over 30 minutes, biting into my hoodie to try to muffle my cries, and the nurse came with the Tylenol and I reluctantly took it because it was such a high dose it is bad for the liver. I asked if I could have more water and she rudely replied, "NO". I waited over 2 hours for the MRI, and for one of those hours I was crying and shivering and asking everyone who passed my room for a blanket.

One really kind male nurse kinda went omg, here lemme get you blankets! I thanked him so much, so the second hour I wasn't as cold, but the pain was still there. Tylenol of course didn't help my nerve pain, so I was screaming and pissing off the staff. So I spit-took some of my own pain pills hoping to stem my pain and stop upsetting the staff that already thought I was faking and with every cry I was pissing off more and more.

I was able to use the phone and could talk to people thankfully. I was not crying alone. That helped me a lot after being assaulted, like, maybe I couldn't be assaulted as long as that phone was there. Then suddenly after hours and shivering and crying, someone came and told me it was time for the MRI.

The tech helped me into the wheelchair. He seemed to treat me as if I may or may not actually be hurt. During the MRI I was screaming like hell though. MRI's without good painkillers for me are the worst. For lumbar spinal, lower back, MRI's you have to lie on your back on the table, straight and be still.

That position is one of the most painful positions for me to be in for a period of time, after 5 minutes the pain from my spine flares into all areas of my back and legs. I was screaming so much that I made my throat very hoarse. The poor tech kept asking if I needed to stop, but I said, "No, we can keep going." Because I knew it needed to be done; if only to just show my attacker that I actually was not faking, oh and the bitch nurse. I hadn't screamed that much since I got epidurals, lol.

So after the MRI I nearly passed out trying to get into the wheelchair. The poor tech had to give me a paper towel for me to wipe the tears and snot on my face, lol. I was wheeled back, helped back onto the cot in the ER room, and I lied down on my left side, most comfortable position, and got immediate relief. 10/10 down to like 8.7/10 pain, lol. I was still crying and biting my hand to the point it was bruising.

Bird: 
What a fucker

Neptune Fallen:
Within 10 minutes the bitch nurse came in, but she didn't have that hard look on her face and she proffered pills at me with water. I looked at her like, wtf is that?

"Here." she said, expecting me to just take the medicine without knowing what it was. I mean I have fucking medicine allergies! I also am on other medicines, I am not gonna take strange pills I don't recognize!

"Sorry, what are those?"

"Dilaudid and Zofran," she stated, her voice wasn't harsh, it actually had a bit of sympathy in it. I was in so much pain I took the pills and water and downed the. Dilaudid is the hardest Narcotic I take for pain, it can be up to 7.5 times stronger than morphine, and Zofran is popular anti-nausea medication. [A doctor recently told me that the molecules that make up Dilaudid is just slightly different than heroin... O_O ]

After 30 minutes the nurse returned with the doctor in tow and the doctor didn't have that same sadistic look on his face from earlier. I mean, when he first saw me, he had been cold, stonewall, and rude, suddenly he was like sympathetic and concerned. He asked what had happened to me that caused my back to be so bad, while the nurse began to put an IV into me. I asked what was going on with the IV.

"You're still crying out in pain, we're going to give you IV Dilaudid," the doctor said. The doctor who assaulted me, thought I was trying to score narcotics by faking an injury, and gave me Tylenol after I had already explained what had happened to my back was finally giving me something for my pain that would be help to me, hours after I arrived.

"Well, as I already said, I had spinal surgery already. I have spinal stenosis [narrowing of the spinal column that causes pressure on the spinal cord, narrowing the openings where the nerves leave the spinal column; associated with pain and other symptoms.], spondylothesis [forward displacement of a vertebra over a lower segment; a condition in which the vertebra in the spine slips out of the proper position onto the bone below it.], and radiculopathy [pain in the low back that radiates out from the spine and out into the legs (sciatica)] that's going down my legs really bad. I was home alone and I just couldn't handle the pain, and I was trying to go the bathroom, but my legs gave out on me all of a sudden, it happens sometimes, but usually if I've been walking or something, not if I've been lying down." I explained everything, again, and he was nodding, looking at me with understanding, and he actually seemed like he actually cared. I was holding back the tears as I suddenly felt the Dilaudid flood into my body. I felt Heady, and I clutched the Cadance My Little Pony that was in my pocket tightly. Why was he being so nice all of a sudden?! This time I guess he listened and believe me though.

He said that I should see my nuero-surgeon again... despite that I'd been written off by my surgeon and the doctors at the University of Southern California. He also recommended pain management, which often involved narcotics. The doctor who thought I was after narcotics was saying I should seek out narcotics. Things were hazy and he left the room, I relaxed and I began to try to decipher what to do next, what had happened...

Bird:
They thought my little bird was a drug addict, too.

Neptune Fallen:
It happened to me a lot. I look young, I am in my 20s... well sort of, if I run into a doctor I know, lol, like at VCMC the doctors may KNOW me now I go so often! /facepalm. But, if I have Sib with me, I never have been assaulted.

Bird:
That's probably a good thing... Are you okay? That sounds like it was horrible. (the finger fucking, I mean.)

Neptune Fallen: 
It's only been when I've been alone that I have been assaulted like that.
No, not really...
It was almost as bad as this female nurse who essentially used an object to vaginally rape me. [link to what should have been done.]

Bird: 
Oh? what happened?

Neptune Fallen: 
That hurt worse, cause she was just sick and MFing twisted as hell.
She used an ultrasound unit, which is a rather large instrument to be inserted, penetrating a lot more than was needed. I can read ultrasounds now. She saw what she needed after a few seconds... she took minutes... over 20 min....

She didn't any lube either
There was blood all over afterwards...
sorry I mean enough lube, she used like maybe a 1/5 of what was needed.

Bird: 
What a fucking bitch. hope you reported her too. -hugs- I can't believe how often shit like this seems to happen to you. Makes me even less trusting of taking my birdy to a hospital

Neptune Fallen: 
Every time I would whimper or cry she would like press harder or further in.
I did omfg... I did report her.
Just stay with her if you go to the hospital. I mean I have issues involving my bladder and bowel, and my legs, so that's why my pants come off so often.
Checking rectal tone, by putting a finger that is lubed gently inside the rectum and having someone squeeze down is actually something I am used to. 90% of the time it is not even uncomfortable... (possibly because I barely can feel it... which is a wonder what that doctor did, cause he managed a lot of pain when I didn't have many nerves functioning lol.)

50% of the time I can't squeeze the finger. Which isn't good.

Bird: 
:( no... I'm sorry you have to deal with so many sick perverted doctors too. My birdy would never be able to cope with something as horrible as that anywhere near as well as you do. hope they both got fired...

Neptune Fallen: 
Well the finger thing is a more normal protocol regarding spinal cord injuries.
It actually is a medical test to check to see if things are working.
That doctor is just.... I have no idea
He thought I was faking, it's why he gave me Tylenol, and told me not to take my own pain meds despite how much I was screaming, crying, and the obvious (to him, I guess fake) pain I was in.... Or he assumed that I was already doped up on the meds.

I mean I said I hadn't taken my pain meds, I asked, nearly begged, if I could take them now, he said no, I could have Tylenol, and he insisted that it would stem ALL my pain!
After the MRI they brought me a hydromorphone (Dilaudid) and then gave me more Dilaudid in an IV. No other doctor has ever given me as much pain medicine as he did, I mean in that short of time. I got so high my speech became slurred. I was so alarmed I asked the nurse what was wrong with me and she laughed at me. She was all like, "You just got so much Dilaudid that's what's wrong with you." As if I should know what's wrong cause I probably doped up all the time or something.


And the ultrasound thing she was a nurse, she probably lost her job.
Oh heh, I can get WoW General chat to stop talking about rape by saying "giving a bj is more fun than having it shoved in somewhere"
Lol.

Bird: 
Hope so, before she hurt anyone else. Birdy still isn't okay with any intimacy with me, something like that would just destroy her...

lol! that stopped them?

Neptune Fallen: 
It did. That is how you stop the trolls. I never would have guessed! I was tired of seeing the rape talk. It stopped the entire chat actually. I think they might have been like omg irl girl! or omg gay guy! Probably the first. Or think I am a GM with a dark sense of humor

So, I've gotten more comfortable with my body ever since the time in the ER Sib was holding my hand and 3 nurses were putting a catheter in my urethra and 2 other nurses popped inside to ask a few questions. So 3 men and 2 women were all looking at my nether region, and Sib was still holding my hand, and I just bust out laughing as a passing doctor stopped by to ask something of the goddamn nurse who was up in my stuff, too

It isn't sexual... at all. All of them, it was professional.
We make it sexual. That nurse and doctor I mean, I think THEY made it sexual....
Or at the very least highly inappropriate. A butt is for pooping. There's probably over a hundred people who have seen my vagina.
Maybe hundreds by now, I dunno how many times I've been in the hospital! I've been cath'd a lot. It usually takes 2-3 nurses to try, fail then succeed. >_>

Bird: 
Yeah, they cath'd her when she broke her hip. bugged the hell out of her and she was drugged and in shock at the time. All she really cared about the entire time she was there is getting them to take it out. And they threatened her, telling her she would die without it before she would even let them

Neptune Fallen: 
That wasn't necessarily a threat with a broken hip.Her bladder could easily overfill and her kidneys begin to shut down, which... leads to dying... If you have to stay in bed and can't do much moving, or have impairedness in feeling of the urological system or control it actually can be a life or death thing.

I've been to the ER JUST to get a cath, to prevent organ damage, cause for a while I couldn't release the pee, my bladder would get distended and I would have the urge to go, for hours, and it would just sit there. Urine putting pressure, harming my kidneys, at first I hated it, but when you haven't urinated for over a day, omfg.... a catheter, I don't care if there are 1000 people watching .

Not Given Up Yet... Not Sad Enough?

So in my last blog post I explained how I was pretty much told that I was going to be disabled for life, by one of the most prominent doctors in California. I had been seeing a doctor from UCLA and he had no idea how to help me, so he referred me to another doctor at USC, and that doctor said that my back was pretty much #$%@ed forever.

Between then and now a lot of things have happened, some good and some bad.

I had an appointment with my PCP (primary care physician, the kind of doctor you see for normal check ups) to go over everything I had gone through at USC. One of the first things she said, before wanting to follow instructions that I had been given from that doctor, she immediately stated she was going to force a second opinion from Dr. Herman from UCLA. She won't let them give up on me yet.

The USC doctor told me to pursue every problem I am suffering from in my back separately. The pain, the urinary issues, and the bowel issues. All of that Dr. Flom, my PCP, agreed would be a good idea to seek out, but she is still pressuring Dr. Herman- the spinal surgeon who already did surgery for me and gave me back limited walking- to see me again.

So I saw the urologist, and at first he was sort of understanding that I had narrowed nerve space at the level in my back where the nerves that control the bladder is... And they had me give a urine sample and did an ultrasound afterwards and found that my bladder was retaining a significant amount of urine, and that I had a nasty infection... which I hated to admit to them that I had had for weeks before coming to see them. I just hadn't been able to get to a doctor or clinic before that appointment, and was hoping it would clear up. "Any day now," I would think, but like three weeks passed... and right before seeing the doctor, I got a high fever over 100 degrees.

I got antibiotics from the urologist, and the fever didn't go down. Soon they were all done and my fever was still with me. So I again thought, "okay any day now..." And then nearly another week passed and I had another doctor's appointment with my PCP, Dr. Flom. So I was asked to pee again, and they took blood. That was on 12/2 Tuesday. Still sick... Got an entire gram, not milligrams, a gram of a strong antibiotic into my butt.... made it sore, but I began to feel better by Thursday. Then Friday I got a call on Friday that I needed to come into the clinic ASAP to get a catheter put in, a follie (used for long term, it just sits there and gathers urine often like in the hospital), like they wanted me in within the hour- totally serious.

After a couple phone calls I was able to get a friend to take me into my clinic to get me fitted with one, instead of having to go to the ER. My bladder failing to empty was causing me to be sick apparently. My PCP had consulted with the urologist and they wanted the catheter ASAP. So now I have a cord and a bag for my urine... wooo..... the only upside- I don't have to get up to go pee while playing WoW so much, lol. But, there was raised concern about my kidneys, possibly being damaged... which scares me. Mostly because my mother had full blown kidney failure when I was too young to remember and then she needed a transplant, and got a kidney from my father when I was 6.

Miserably Disabled?

So World of Warcraft is the biggest form of social interaction that I have, mostly because I am sick and these days I can't walk further than 20 or 30 feet without issues. My back issues have gotten so serious that I am nearly completely wheelchair bound, again, like I was before Dr. Herman saved me last year with spinal surgery, granting me the ability to walk again.

The guild that I am mainly in is... coarse at times to say the least. Within a couple days of mine first joining there was talk about penis sizes and if they really mattered or not, which the consensus was, that yes they did, bigger was better. So when I jokingly mentioned that they should consider marketing catheters to hardcore gamers, so they wouldn't have to go to the bathroom it was met with a lot of humor.

Some guy replied, it's called a soda bottle, another replied that it's really lazy that it only takes 2 minutes to use the restroom. But then suddenly I was being personally attacked by a newer member of the guild. Since the new expansion has come out, a lot of new people have joined the guild and are more active in it.

The person began to criticize me for making fun of people who really need catheters. That there were disabled people out there who actually needed them. I had also criticized that if you needed them so badly as to use them every time to pee, it seems like it'd be painful to use one every time, why not use a follie which just stays there... The ads for the reusable kind bug me like ouch, thoughts.

I was being accused of making light of serious medical conditions and saying that people who needed catheters were stupid for using the open one every pack, vs the follies. So then I was like, well... no I wasn't trying to do any of that, I have a catheter in, I was kidding earlier that the plus side was that I don't have to get up as much to go pee. But the person thought I was making up the entire thing.

Why would someone make that up? I am thinking...

Other friends in the guild began to back up my story that I had indeed joked around earlier about the catheter and less bathroom breaks. I also explained to the person that I was also disabled and not making light of disabled people, or making fun of them either, cause I am one. Nearly anyone who has been in the guild longer than a week is aware that I cannot really walk and I am disabled, and in a lot of pain on a near constant basis.

But this person seemed to still take this entire matter very personally even after I tried to drop it all after explaining and apologizing. They asked how could I be disabled and yet speak so care-free about being so? I asked them if they were disabled, and they said that they weren't, but they still knew that if in real life, I were really ailing from such severe issues, I  could not possibly be SO happy.

I asked in return, should I be  miserable about being disabled? I had been told a couple weeks ago that I would probably never get better, and so I've tried to come to terms with it. Instead of being depressed about not walking, hiking, snowboarding ever again, I've tried to figure out the things that I can still do with my life. I try to find the good and humor and the happiness, so yeah, I do take being disabled light-heartedly, because the other way to take it, with soul-crushing depression I already have tried, and it depressed me very much and has made me suicidal. Now these times were well over a year ago and more, but I don't want to relive that.

Having others in the guild back up that yeah indeed I am wheelchair bound... There is a photo of me from August on the guild site of me in one... I've spoken extensively about my conditions and I know a lot about my injuries of the back. So with a history of that, they, know that I am not faking, or at least I seem to know a lot. This seemed to piss the person off even more... Which I wasn't trying to do!

It seems often when people hear or see glimpses of my life that they feel bad or are surprised why I am so happy as I am, or so grateful as I am for what little good I have going on in my life, but that is exactly why I am so happy with the good. All of the bad makes the good so much the sweeter.

It's not even just right now in my life how it is right now, but all of the bad things that have befallen me in the past, too, that I am grateful for a bed, food, books, warmth, and people in my life who care about me.

On Thanksgiving I thought I was going to be alone. My best best friend was going out of town, so I had no ride to his family who'd invited me over with them, but the family I stay with insisted, well more commanded like I was one of their own kids, that dinner was at this time and I was to attend, lol. Every year they take a candle and go around the table and every person at the table says what they are thankful for. I've never been at a small enough Thanksgiving celebration that I've seen something like this, but as I heard the parents both say that they were happy that I was now living here with them, I wanted to cry because it meant so much to me.

Every since my mother died when I was 12, I lost my family, as shattered and poorly held together as I didn't realize it was. I've just wanted a home since then... When it got to be my turn to say what I was thankful for, I could have gone on for hours, but I said for this place, this food, for having food, and for having you all in my life now. It might just be that I rent a room from these people, but they have become closer to me than my own living blood-related family that still breathes. When I hear the youngest say, "Mandi, I love you," my heart melts and I bend down and hug her close. I'm the big sister to her that I'd wish my sister could have been to me. I'll make sure nothing bad ever happens to her, even after I leave this house... 

My father finally made attempts to find out whether I was alive or on the street or what had become of me, and I let him find out, and then he half-heartedly said he was going to see me for Christmas! I say half-heartedly because as it drew closer it became less and less likely, despite him coming out to Southern California several times a year for business. Maybe I am also happy that I am relieved I don't have to go through the stress of seeing him? 

So I've been very sick, and that's partially why it's taken so long to publish this post... I had a very high fever for a long time... Then I also got an early Christmas gift of Warlords of Draenor expansion of World of Warcraft, which I have been playing when I have been feeling up to it, hehehe... But then people kept asking me about the blog, I was surprised.

Maybe someone out there I can give hope to... Someone out there who has nothing to live for right now, but someday it might get easier. You might have food to eat every day one day. You might have kind people in your life one day, people that you might want to live for, even if it is a painful life, it is worth getting up in the morning and hurting really bad, to wander out into the living room to see a smiling little face full of giggles and happiness especially when you feel good enough to tickle some little feet. I'm mean, he he he... but, I don't tickle too much, and stop if she asks, so I'm not mean like my elder sister and father were to me.

Life surprises you.

End of the Line

Socially I am not the most intelligent of people, especially since I've been injured and secluded to my room for the last few years. I had a wonderful time going to the event Monolith in Ventura, but then when I went with the same friends to karaoke I inadvertently really %*$&ed things up.

Usually when I mess things up this badly I hide for a while, which I mostly did until now. I was on Facebook a little, but only for brief stints here and there to reply to people. One of my best friends from early 2006 I can only reach him through Facebook- which I find annoying to all end.

I had been trying to talk to my friends but I was not getting much of a response from my friends at karaoke, and then other began to speak to me and I got caught up attention and conversation. Things like that hadn't happened to me in well over a year and a half. When I had wanted to stay longer than after they were leaving it greatly upset them because they felt responsible to see me home, despite my assurances that I had a ride home. I do have a few people I know in Oxnard who can give me rides when I need them later into the night, but it was a situation that was difficult to explain I suppose.

By the time my brain was able to process why what I did was so bad and rude and unkind it was really too late... I do the same things in World of Warcraft, too sometimes. My mind is like set on a slow shutter speed for realizing things about social situations sometimes.

When Halloween came around I went back to Monolith with my bestie in tow with his monitor and PS3. After I sang a karaoke song several of the people who had sung seemed annoyed with me, and I wondered if it was perhaps that I had shown them up with a song that I know that I can actually sing well. I am not the best singer, but there are some songs that I can sing. Apparently so well the point that when I ran into a friend I hadn't seen for two years he suggested perhaps I try to go into singing to help with my emotions and feelings.

I nearly was able to get a swapped pass for Blizzcon, until the guy who was going to get me the pass really began to hit on me, and I was like "Dude, isn't that your wife right there?" and he was like "never mind that.." once she caught on to what was going on, she drug him off and I didn't see him again. Ugh. But I actually ran into several people I knew that night.

Saturday I got to go to Stan Lee's Comikaze, which I had fun. I got to meet all the voice actresses for the Mane 6 of My Little Pony. The voice actress of Rarity was horrible to me. They were together about to leave the stage and I quickly asked, "Hey can I get a photo please, people were standing in the handicapped area here?" as people finally moved enough for me to see them from my wheelchair... in the handicapped area where all these people were STANDING....

So Tabitha St. Germain says of course, "No, you have to get pictures at the signature booths!" and like stormed off. I had my camera posed and ready to snap a photo and everything. Ashleigh Ball, who does Rainbow Dash and Applejack seemed like 'wow I cannot believe you dissed that poor girl in the wheelchair'.

So over in the booths they are separate and charge $10 a photo. So Rarity's voice actress apparently has something against people in wheelchairs, that is nice. In fact the entire panel was a nightmare because so many people went to the front handicap area and were standing blocking my and other handicap people's view. Many were children which 1. where were their parents? no where, they should have been told to #*%&in sit 2. The parents shouldn't have allowed them up there at all 3. the staff should have intervened. The panel was a huge flop unless you were a child or able-bodied. I even tried asking a staffer about it, and they were a complete idiot saying that the panel was done, when it hadn't even begun.

At least Tara Strong complimented my Twilight cosplay, although she does not game. I also ran into SO many people I hadn't seen in a long time at the con, from weeks, to months, and even in years people I hadn't seen, it was fun being able to catch up with everyone. I also discovered that Street Fighter II is very different than Turbo remix... VERY different. I lost a lot, though I did win a lot. I was sitting down in my wheelchair so it was a bit difficult to play.

So yes... Running into old friends... Running away new friends to the point that guilt has manifested into physical pain... At least I had the appointment on the 5th at USC (University of Southern California) Medical Center to look forward to...

This appointment was made because the best doctors in neurology and orthopedics were really at a loss of how to best help me, the ones in Ventura, some of them also part of UCLA! So I would be sent to a bigger center, better doctors, one more experiences than a doctor that is part of UCLA and VCMC... This was going to be the big answer of what is wrong, or what would fix me...

So I was running around on Monday getting my medical records because when I had tried to get them before I had had trouble, and even on Monday I had trouble with them having printer issues, again. *facepalm* But eventually I got them. The employee at Ventura County Medical Center heard my situation and actually dropped off the records to my house since I didn't live far off from him. So with that I was immensely grateful and had everything. 

I go in and filled out a lot of forms. I speak to a nurse at great length about the pain, what kind of pain, where, what other symptoms, when did they start... I can trace the main nerves in my leg-it is alarmingly bad, you can see it on her face. There is a reason I came from so far away to get here. I drove nearly two and a half hours to make this appointment.

The doctor comes in and sighs, and my heart drops. Surgery might make me better, but it might just make me worse. What would be best for me is pain management.



"Pain management"

The term that I don't want to hear. I reached the top of the ladder of resources of helping my back, and I hit a wall. Pain management is a last resort... it's what I am sort of doing right now. If I go to a clinic they might not have anything else to offer to me than the pills that I am already taking.

It's like having an illness, going through all the treatments, and being told that you are not better, but not any worse. I feel like I am dying right now, the pain is so bad, I want to scream as loud as I can. I am just in this stasis of pain.

For those who are unaware of what is going on with me, or chronic injuries or diseases/problems like mine, here is what is going on:

I went to VCMC Ventura County Medical Center, where my back doctor (who works with neurology and orthopedics [spine]) also does his work, to get my records. I was told to get records for a while back... So I asked well, what do I have for the last 6 months... I had over 12 hospital stays. The man stopped counting at twelve, he was five months back... So I just said hey, how about the last three months. And this was just one hospital, I've also been at three other hospitals, Simi Valley Hospital, St. John's Oxnard, and a hospital stay in Canoga Park that was over a week.

BUT, VCMC has all of those records, in one place, except a CT scan that was done at St. John's I found out, so I had to unfortunately go there to get that.

In my records it reads at something even worse than what I had before...



X-Ray Rad Lumbar Spine Bending Views 8/21/14:
                             reason: Radiculopathy (pain radiating out from the spine, like sciatica) lumbar, thoracic

Findings:
 Exaggerated lumbar lordosis present. (The term lordosis refers to the abnormal inward curvature of the lumbar and cervical regions of the spine.)  No acute fractures- no broken bones which is good.
  Probable lombosacral junction transition.



MRI With and Without contrast 9/24/14:
Findings: 

L4-L5: bilateral laminectomies (Laminectomy is surgery that creates space by removing the lamina — the back part of the vertebra that covers your spinal canal.) at this level. Enhancing scar tissues is again seen. There is a residual 1 cm right paracentral disc protrusion causing effacement of the right lateral recess. There is moderate right neural foraminal narrowing. (... resulting in eventual nerve compression.)

L5-S1: There is a milder anterolisthesis of L5 relative to S1 with pseudo bulging of the intervertebral disc. There is a persistent left paracentral disc protrusion. There is moderate left and right neural foraminal narrowing ( is a condition of the spine that can cause pain and other symptoms resulting from spinal nerve root compression). This is unchanged when compared to previous study.

Impression:
1. Comparison is made to an outside study from 8/21/2014
2. Overall, there has been no significant interval change.
3. The patient is again noted to be status post bilateral laminectomy at L4-5 with enhancing granulation tissue.
4. Stable 1 cm right paracentral disc protrusion causing effacement of the right lateral recess. There is moderate right neural foraminal narrowing.
5. Mild anterolisthesis of L5 relative to S1 with pseudo bulging of the intervertebral disc with a persistent left paracentral disc protrusion. There is moderate left and mild right neural foraminal narrowing.
6. Stable 5 cm central disc protrusion/extrusion at L3/4. [[GOD I HOPE THEY MEANT 5MM, this is a typo on their part.]]


So that was like a comparison, so you don't really get what's wrong.. I have over 50 pages in front of me.. lemme skim some more...

Oh, from my PCP, not sure how the hospital got this one...

5/29/14
"Chief Complaint
back pain/seizures/emergency room/hospital stay follow up

History of Present Illness
went to Tarzana hosp for loss of bowel with extreme back pain felt as if had decreased DTR (Deep Tendon Reflex, so decreased reflex response); had MRI back and brain- brain showed cysts told to follow up neurologist; back showed L5 herniation (bulge) 9mm and told needs back surgery again. worried about going to physical therapy. no loss of bowel or bladder since then. mad at pain management b/c only gave norco 1/daily; [OH OH and told me to smoke weed, like get high forget my pain by doing that, dunno where I'd get the money. They gave me an RX for norco for 15 pills...] did get norco from other hospitals. [and clinics and my PCPs] wants dilaudid 3mg [no 2mg if that is ok which I now have regularly every month from my pcp]. pain is constant, radiating right leg to knee [and down to my foot, and my left leg too]. homeless in 2 days. NCS (Nerve Conduction Study- where they stick electrodes deep into your tissue, shock you, and see how long it takes to travel up your nerves) tomorrow at pain management. also had EEG (The electroencephalogram (EEG) is a medical test used to measure the electrical activity of the brain, via electrodes applied to your scalp.) at Tarzana and it was normal

Problem List/Past Medical History
Asthma NOS (not otherwise specified), w/o acute exacerbation
Bipolar
Chronic Pain, not elsewhere classified
DEGENERATION OF LUMBAR OR LUMBOSACRAL INTERVERTEBRAL DISC
DISPLACEMENT OF LUMBAR INTERVERTEBRAL DISC WITHOUT MYLEOPATHY
LUMBAGO
Spinal Stenosis of Lumbar Region without Neurogenic Claudication
PTSD
[and it goes on...]"

OH OH OMG here is the report from me falling in the shower at that horrible hotel. The only time I have ever fallen since I have hurt my back. The third time I have ever fallen in the shower in my life...

6/6/14
"Impression and Plain
    Diagnosis Back Pain NOS (ICD9 724.5)
                      Degeneration of lumbar or lumbosacral intervertebral disc (ICD9 722.52)
    ....[pretty much rest rest do things normally]
    Sit down to shower/bathe
    [I swear that this was the most genius suggestion ever... Bathing has been so less painful since I only take like baths now. I shower down after soaking in them, but like I will mostly clean in a bath. The doctor really stressed it and I felt like a bloody idiot, but it's been working, and it is so relaxing.]


So going over these doctor's notes, I am finding things that I suspect I wasn't meant to read... like how I don't take my pain meds like how I should.

7/1/14
"...still has dilaudid left and tries not to take it; taking Tramadol instread (yes it said instread) but not daily- 2-3 on a bad day but not daily; norco 10 pills left; severe uses dilaudid, mod pain uses norco; least pain uses tramadol-needs more..."

Yeah, that's me. I was crying from pain yesterday in the USC office and my friend asked if I wasn't supposed to take meds, and I admitted no, that I could, and I realized oh, I should take something for my pain, aside from the fact I was causing a scene with my whimpers.

"In wheelchair, able to ambulate with pain."

Medical History
All Problems 7.11.14
Spinal Stenosis of Lumbar Region without Neurogenic Claudication / 724.05 / Confirmed
Posttraumatic stress disorder / 309.81 / Confirmed
OBESITY, UNSPECIFIED / 278.00 / Confirmed [oh alright, cool]
Headache, migraine NOS / 346.92 / Confirmed
DISPLACEMENT OF LUMBAR INTERVERTEBRAL DISC WITHOUT MYLEOPATHY / 722.10 / Confirmed
DEGENERATION OF LUMBAR OR LUMBOSACRAL INTERVERTEBRAL DISC / 722.52 / Confirmed
Bipolar / 388.66 2014 / Confirmed
Asthma NOS, w/o acute exacerbation / 493.90 / Confrimed.

From Dr. Flom my PCP:
MRI BRAIN 5/21/14
NL-1CM CYST IN LEFT PARIETAL REGION
MRI LUMBAR 5/21/14
L-3-4 -3-4MM BULGING
L4-5 9 MM CENTRAL DISC PROTRUSION
"no significant difference from previous MRI study dated 8/8/2013 except for possible L3L4 disc protrusion being 1mm larger"



Did I mention that the papers I am going through are double sided? I am looking for Dr. Herman, my back doctor's notes..


From Dr.Herman 8/29/14
"...she has what appears to be a slight enlargement of a disk herniation... She has some foraminal narrowing. She has some residual stenosis at L5-S1 and 3, 4. She also had multiple levels of degenerative disk disease and disk height loss.

In assessment of the patient's course and condition, we had a long discussion regarding treatment options. I have indicated to her as Dr. Hsu also mentioned her she has extensive degenerative changes and a surgical intervention carries high risks with guarded prognosis at this point.

...a referral down to a tertiary car center." Which was USC, and which lead to.. pain management. This was the last time I saw him, my back doctor.


9/24/14
Chief complaint chronic lower back pain with hx of laminectomy and extra lumbar. Patient c/o having difficulty ambulating chronic in nature. She states she is not taking her pain meds. No acute changes noted. Exacerbations of chronic problems.

All Problems: (oh we got new ones!)
Spinal Stenosis of Lumbar Region without Neurogenic Claudication / 724.02 / Confirmed
Lumbar neuritis or radiculitis NOS / 724.4 / Confirmed
LUMBAGO link 2 (I have the "rarely seen") / 724.4 / Confirmed
DISPLACEMENT OF LUMBAR INTERVERTEBRAL DISC WITHOUT MYELOPATHY / 722.10 / Confirmed
DEGENERATION OF LUMBAR OF LUMBOSACRAL INTERVERTEBRAL DISC / 722.52 / Confirmed
Chronic pain, not elsewhere classified / 338.29 / Confirmed
(and those are just related to my back)

from 8/8/2013
L3L4 5mm central protrusion, L4L5 residual 2mm bulge seen, L5S1 5mm paracentral bulge. (This was before the doctor at clinicas ruined my back... then it went to a cm)

I say that I am at the end of the road now because everyone in the medical field knows, pain management is a last resort... Treating the symptoms not the numerous problems that are causing the myriad of issues... May God give me strength. Light bless me. I am working on my vocal training on my own and my writing because I now have doubt that I will ever be able to return to a normal job. I've begun to take pain medical, tramadol, daily, and it has made the last few days bearable. I wish I had a better control on my life.