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.

911 & my "Family"

[[My previous post to this I was complaining about Maria, my landlord's [Tony's] mother, who began to live here over a week ago... on the couch. She speaks only Spanish, only a few English words, although she understands a few, and she speaks Spanish at me as if she has expectations for me to understand, and if frustrated that I do not speak it... Which I dealt with a lot working at CVS in Van Nuys, people who spoke Spanish and were annoyed that I did not speak Spanish.]]

Then she gives up after a while, realizing that I just don't understand what she is saying. Also Maria, she treats her family very horribly. She takes advantage of them, and blackmails them into helping her. Her son Tony, my landlord, she was furious at him a while ago for never taking her to the doctor or other places during Monday-Friday during normal business hours, you know when people typically work... "My nephew always takes me! Yet you can never take me and you're my own son!" She said. Her nephew is unemployed. Her son works during the week.

Once she got evicted and needed help leaving her apartment though, her son did take days off of work to help her. That was a serious enough event for him to help her! Despite the things she said to him about him never helping her! She also says horrible things about her grandkids. She despises one of her own daughters because her grandson, her daughter's son, is gay. As if it is the daughter's fault and something so terrible.... And there are so many other things.

So when she came here and began living here, I was anxious. She'd already stolen items here and there when visiting. (total klepto) She's taken a couple of my items from the garage. When I was in the bath she went into my room for some reason, I have no idea what she did in there, but she went in.

Yet she is friendly enough to always say "hola" and maybe how are you, in Spanish. (Google keeps going nuts about Spanish words being spelled wrong sorry). Also I think other pleasantries that I have NO idea what she is saying let alone how to spell. She's even offered me food she's been making when I've gone to the kitchen. She's tried asking me questions... She thinks that I am very beautiful [she said this one night that I was so beautiful that her middle son's girlfriend would have to be careful, he'd probably come over here so often to see me, now that I'd moved in... Ironically he comes over a lot because he works nearby, and he lives a few hours' drives away.] But she's called me beautiful since then, too. I always say thank you, or reply back.

So I had this brief conversation regarding my last boyfriend with my best friend... My last boyfriend was the nicest of my three boyfriends.

Brackets [these things] indicate things that have been added after the fact. Also my Bestie has been referred to as Allen before.

[10:27 AM] Best Friend: Marcus is an asshole

[10:27 AM] Neptune Fallen: well I mean when we were dating

[10:27 AM] Best Friend: I told you that when you started dating him, lol

[10:27 AM] Neptune Fallen: he was nice to me

[10:27 AM] Neptune Fallen: did you? [say that]

[10:27 AM] Neptune Fallen: he treated me nice

[10:28 AM] Best Friend: Yeah, and you got upset at me about it

[10:28 AM] Neptune Fallen: he was sweet to me

[10:28 AM] Neptune Fallen: sorry... I should have listened [[I REEEEEEALLY should have]]

[10:28 AM] Best Friend: and you even told him that I said that in front of me, like out of spite

[10:28 AM] Best Friend: "Best Friend says you're an asshole."

[10:28 AM] Neptune Fallen: well, he always said himself he was an asshole

[10:28 AM] Best Friend: he is an asshole

[10:28 AM] Neptune Fallen: he is [after all]

[10:28 AM] Neptune Fallen: lol

[10:29 AM] Best Friend: He's not like Mike Watson asshole, lol

[10:29 AM] Neptune Fallen: anyway at the TIME

[10:29 AM] Neptune Fallen: he wasn't an asshole to me

[10:29 AM] Best Friend: Yeah, then he was just being biased

[10:29 AM] Neptune Fallen: I know

[10:29 AM] Neptune Fallen: and I knew

[10:30 AM] Neptune Fallen: so I was like Belle in Once Upon A Time, like there's good in you! You can't be so bad....

[10:30 AM] Best Friend: Yeah, don't ever go into a relationship hoping you can change someone

[10:31 AM] Neptune Fallen: no, I just figured that I liked how I was treated and I thought I would be treated that way

[10:31 AM] Neptune Fallen: and maybe he might treat others that way when I was around more

[10:31 AM] Neptune Fallen: and he did to some extent

[10:33 AM] Neptune Fallen: but anyway also like a scale like that my dating scale gets better, James raped and beat me, [name removed-2cd bf dated for 6.5 years] controlled me, and raped me, Marcus was an asshole who manipulated me into sexual things I didn't want

[10:34 AM] Neptune Fallen: OKAY Maria Sr, she kind of like speaks to me in Spanish expecting me to understand, but she is nice I guess.... sort of...

[10:35 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 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?"

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

[10:36 AM] Neptune Fallen: Kind of like Marcus.

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

[10:36 AM] Best Friend: You can't just look at how they treat you

[10:37 AM] Neptune Fallen: So like 30 min ago, I went to get some water----she treats Alex [my roommate and Tony's step daughter] the WORST

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

All above I wrote a while ago, below I wrote a lot earlier.

So like 30 min ago, I went to get some water----

The last months, weeks, and days, my back, the pain has been worsening... and as I limped out of my room with my cane and empty water bottles, headed to the kitchen, I thought I was okay. I got there, and there was Maria, Tony's [my landlord] mother talking on the speaker phone, on her cell phone, with friends or family in Spanish loudly and happily. Laughing and smiling. 

I walked past her, nodding, smiling, and hiding my limp and pain, walking with my back straight, to the fridge, pretending that I was completely okay and not hurting what-so-ever. I began to fill the first bottle with the fridge's filtered water and when I was almost done--it hit me, like someone shot me with a gun. Pain, weakness, numbness, and all of it just shooting from that spot in my back and down my legs. Even right now at 1PM, after taking a lot of pain meds, I am hurting very terribly.

My knees weakened from pain, which I leaned on my cane, but the legs wouldn't support me because of the weakness.I grasped at the fridge as I slowly fell downward, my legs failing me. Sitting on the floor, the pain was so terrible, I finally just lied down to relieve my back from the pain of sitting. I glanced to Maria, and she was still chatting loudly with whomever she was speaking with, staring off in that other direction.

It was my horror when I glanced at her still chatting loudly with what sounded like friends, glancing at me briefly and then ending her conversation, then coming over to try to get me to stand. The following explains it. (I refill 500ml/16.9oz/1pt,0.9oz bottles, the small kind you often purchase in a pack or from a vending machine.)

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

[10:39 AM] Neptune Fallen: And I had 3 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.

[10:39 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.

[10:39 AM] Neptune Fallen: It took a lot of effort.

[10:40 AM] Neptune Fallen: So finally when I glace over I noticed she was glacing 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.

[10:40 AM] Neptune Fallen: I say no, no no...

[10:41 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.

[[She was grabbing my arm trying to get me up, trying to be helpful, probably thinking that I was capable of getting up, or hesitant. She has no idea that I am injured.]]

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

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

[10:43 AM] Best Friend: That's nice of her

[10:43 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.

[10:44 AM] Neptune Fallen: She then shows up with the bottle I'd filled and she watches as I down like 8 pills. [1 Dilaudid- severe pain, 4 t tramadol- double dose moderate pain, 1 norco- single dose moderate pain, 2 baclofen- normal dose pain/muscle relaxation]

[10:44 AM] Neptune Fallen: I know.

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

[10:45 AM] Neptune Fallen: And she is knocking on Christie's door, and then Christie shows up at my door and asks, "What happened?"

[10:45 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!

[10:46 AM] Neptune Fallen: "Well the ambulance is on its way." [Christie calmly tells me, like I should be relieved. Like this is great news, I will be getting help!]

[10:46 AM] Neptune Fallen: "You called an ambulance? Oh fuck!" I reply before I can think

[10:47:14 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. [Actually as I am saying this, trying to work an apology she moved out of the way for this rather handsome male paramedic.]

[10:47 AM] Best Friend: >.<

[10:47 AM] Neptune Fallen: "What happened?" [he asked.] and I had to explain everything. According to what he had [been told], I fell [down and], was unconscious [on the floor] at the fridge, and he was [really] urging me to go to the hospital.

[10:48 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 [Ventura county medical center, the hospital), they'd be annoyed to see me."

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

[10:49 AM] Neptune Fallen: And I facepalm, "Well like I've been told like I shouldn't come back. [by more than one ER doctor at VCMC]" He asks normal questions, anything new, did I hit my head, etc etc.

[10:50 AM] Neptune Fallen: Again [he] urges me to come with them to the ER. [I have never been more pressed by a paramedic to go to the ER before lol.]

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

[10:50 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."

[10:51 AM] Neptune Fallen: 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 [my room some, the things he mentioned, that the path to my bed was messy].

[10:52 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.

[10:52 AM] Neptune Fallen: and ROFL at your comment, esp at how long they take to see people [at the hospital].

[10:53 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. 

I also had to take some anti anxiety medicine because I was freaking out, and then I fell asleep for a period because the medicine made me so drowsy. Then I wrote above, and have been here and there linking things, working on things for this and other things, talking on Facebook to people I have not spoken to for a while and here I am now at nearly 4PM.

A lot of people I never expected read my blog.... So many see my life as unfair and sympathize with it, which I cannot blame them. If I were someone reading my blog I probably would, too. I spoke to a friend of mine today who couldn't believe that my father was so willing to help me in only one way when I was homeless...

I was homeless a few months ago, before I came to live here. His idea was that I should drop all my medical care, move to Illinois, and instead of living in one of his 2 houses, or condo, that I should talk to someone he knew at a homeless shelter. Which would mean I would have to cancel waiting to see specialists about the seizures and my back, simply so I would have a shelter to stay in Illinois, vs. here where I could just nap on the street or beach at the time.

He got angry at me and stopped speaking to me when I apologized for being a horrible daughter that he hated me so much. I mean my entire life since my mother died he has punished me and denied me assistance and barely any recognition of even care... For months he barely even bothered to find out if I was even homeless or even alive. It was only recent that he found out that I was alive, and not on the street.

I wish I had a family, that'd be so cool... Nearly all of my friends have families. It is only a couple who do not.... It has only been in about maybe the recent year that I have stopped feeling guilty about my envious feelings. That I am in my 20's, and people constantly ask and often ask with the assumption is yes, "do you live with your parents?" I have plenty to be envious of... and it is totally normal. Most people my age have parents, or at least some relatives of some sort who haven't abused them.... or maybe childhood friends-like-family who haven't betrayed them horribly...

So my envy is healthy. It means that I can still feel. And maybe someday, I will have a family, too. For now I have my best friend, I have other friends, like Bunny, Alex, Nathan, other Nathan, Danny, and now Paul is on Facebook. Then there is Gigi and her family who are sort of like family, a cautious precarious family.... but something....... last Christmas it felt like family. Just writing that out, and re-reading it, make me happy. Also, Meroe-- she is awesome, too. I am glad that I messaged her today. She was a great co-worker and friend to me years ago, before I got hurt.

But 6 close people... of them only 5 I know in real life, 2 I've just met, one I met in the last year, and then the other two live far away, so it's hard. But, it's something. I love you guys.

F'in up, Homeless Again, News to Him

Home- It's a place where you feel safe, welcome, wanted. Where you want to go to. A sanctuary. You want to sleep there. Maybe you have family there. And for me it's been the most elusive thing for me to find ever since I discovered how devious and evil my step-mother was.

So I haven't blogged in a while because I thought I had found a secure place, and it was for a while, but things were thrown upside down, at least for while. I thought that I would need to find a new place to go to live, and I know that in my heart that is what I need to do, still.

I've been struggling with money to afford to get to pay for the gasoline to go visit my doctors... Then when I saw my doctor, I tried to share good news, only to have it dashed in my face. Losing 25 lbs isn't enough, lose more. You shouldn't have any romance in your life until your back issues are solved.... That one hurt a lot. Then when I am home I was sat down and told that I was a liability and needed to ... yes, needed to, ..., not really told what needed to be done!

So now my best friend came and he helped me with my room. It is a lot cleaner, which I am SO thankful for his help. Now I can actually find things and work on disposing of donation items, trash, or other things, slowly at pace that doesn't hurt my back, at least too much. Tony, my landlord seems sated with the state of it, not happy, but satisfied enough.

I won't mentioned that I've fallen several times in my room, trying to get out of bed, just from weakness... my back gets worse every day. I need to go grocery shopping for food, but I have no one to take me. I feel like I am in an utterly hopeless situation. Most of my support system has fallen through. There are five people in it-- and I am ignoring them, and I don't know why. And of those five, two of them I've only just met!

Of the two I just met, it was very awesome. I went to Monolith  which was awesome. It was in Ventura. They were friends who play Warcraft like I do, and the place was wheelchair accessible, although it was a humorous way that we discovered this. First we thought that there was no ramp, and only five steps. So I grabbed my cane, and the railing, and made it up, only to discover that there were more steps, and there was a man explaining that there was a ramp on the far side of the building.

So we took the chair back down. I precariously went back down the steps, and we went up the ramps! There were some bumps between different flooring types and I had to guide my new friend on how to overcome the bumps (pull the wheelchair backward). Eventually we reached our destination, really early!

This gave me time to get to know my new friends. Which was awesome. Eventually by the time they were setting up, I was even able to talk to the dude doing the lighting and have the strobe set at a pace where it would not induce seizures upon me. How kind!

An Xbox360 was set up in the rear of the room, and I was told that there was going to be Marvel Vs. Capcom 3, which there never was, but I did wait with anticipation. As time went by and conversation died off I eventually wheeled myself over to the console and tried at King of Fighters '98 not realizing that instead of trying to unlock characters, I was playing an arcade download trial that only had like 8 characters. It was horrible.... some guy tried to join me and it said not available in trial and suddenly I realized why I couldn't unlock anymore characters.

So then... it was Marvel Vs. Capcom 2, which was not a demo. And I don't really know this game too well. Mike Z, who designed Skull Girls, always said that he wanted to "fix MvC2." And I played a fair amount of SG.... so once I recalled how to play MvC2, like after 2 rounds I began whooping the poor guy's ass of who was playing me, and turned on a handicapped, which didn't help him too much. Pfffft and Mike would always be like "learn how to play," you learn how to play Mike...and kick my ass.

And his friend faired little better. So hours of playing video games, I finally took a break and went to the dancefloor in my chair and a girl in a gasmask and cool outfit danced with me until my back hurt. Then I talked to some dude about WoW and how he should get back into it....

When I got home I felt good, until I saw Tony's mother. So I immediately shut myself in my room... and I've stayed here since. I barely leave it. Restroom and water are the things that bring me out. She is creepy. She babbles in Spanish at me as if I understand, which I don't. I am American, I live in the USA, and I speak English. I do not know Spanish, it is a foreign language. It is one hot topic that I feel much heat about in debate.

When I worked in the pharmacy there were so many instances of people who were angry that people did not speak Spanish, or would not speak Spanish to them. California is close to the border of Mexico, but it is not IN Mexico. Spanish is a fucking foreign language, if you come to the USA from another country, learn the native language, which is English. It is infuriating that there is a woman living under the roof right now, who had lived in this country for YEARS and she doesn't speak the FUCKING language! Yet she expects me to know HER FUCKING FOREIGN LANGUAGE?! WE'RE NOT IN MEXICO CREEPY LADY LIVING IN THE LIVING ROOM!!!!!!!

UGH..... I hear arguing and fighting a lot.... Always in Spanish which is fine, it is between the family. I mean, I understood when I moved in with a Mexican family, that yes, they spoke Spanish. That did not mean that I was supposed to learn a fucking foreign language though. When they speak it among themselves to other family members I am not bothered. But when that woman has the audacity to start trying to tell me to DO things, when I am paying rent to live here, and she is free-loading on the couch, and she doesn't evens speak the language of the country she is LIVING in.... AND she has LIVED here in VENTURA LONGER than I have!!!! WHAT IS WRONG WITH HER?! There is NO excuse for her NOT to know English!!!!!!!!!!!!

EVERY other immigrant has to learn English, because people don't bow down to their needs, why are Spanish speaking immigrants given exception?! It is so racist and biased it drives me mad, especially because I dated an immigrant for almost 7 years! He was from the Philippines, HE learned English. People from China, learn English, people from Germany, they learn English, people from Russia learn English, Iran, English, Romania, English. Everyone else I know who is from a non-Spanish speaking country they learned English, why do Spanish speakers have something up their asses that makes them feel that they are SO much better than EVERYONE else, that they are SO MUCH MORE entitled than EVERY OTHER SINGLE PERSON including every citizen of the USA and every other immigrant that everyone else should learn Spanish to accommodate them?

Ah yes.... well.... This is something that has been bothering me every since I moved to California. It felt like I moved to another country. I had to study to be a Pharmacy Tech. to find a job, because I didn't speak Spanish actually. No place would hire a fresh high school graduate who had honor roll in AP classes and other good stuff, previous exp, but didn't speak Spanish.

And then my computer crashes.

To have people close to me who are supportive, even if they are busy most of the week, is nice, and I feel unfamiliar with how to deal with it, and I am sure that they both feel rebuffed by how I have ignored them up until we finally met and went out. It all goes back to home. As I return back to the place I live now and get ordered to do things in some foreign language, I do not feel at home, but also for most of my life now, home has been foreign.

When my elder sister left the house, my step mother, not my father, my step-mother began to cite that they were having 'they same problems with me.' [That they had had with my sister.] Almost immediately. It took only about two months.

The problems that lead my father to ask my sister to leave, which he never got the chance, she left before he could ask her to, were numerous. She turned 18, said she had a physical for the Navy in Chicago, and didn't return. But, she was flunking out a grade, failing classes, skipping them, not doing homework, constantly arguing and fighting with our parents, and then later our father and step-mother, she would have friends who did drugs, smoked, and drank alcohol, and she was sleeping around. There were so many other things wrong that she was doing such as sneaking people into the house and wrong doings against me that I shall not mention, but when my step-mother said that they were having the SAME problems with me?! I was astounded.

It began slowly at first. My bedroom was put downstairs, away from them. I was asked to clean more and more of the house. I was asked to cook the meals. I was discouraged to eat the meals with them. I was getting straight A's but if I got a B that was very very bad. I got very involved with church on the weekends, and if I did anything wrong, that would be taken away as punishment. One day I did not hear something that my aunt said to me in the kitchen, so as punishment I was grounded severely for weeks, no television, music, computer, or anything. Not even church. Just because I hadn't heard her. She had asked me to do something after I had descended the stairs to my bedroom. It was her mistake, not mine, but I paid for it.

As I sang the song from Oasis, "As he faced the sun, he cast no shadow," my father grew angry with me and I apologized. They grew upset with me that I was depressed. It was a thing that deserved further punishment, my depression. Soon when I began to self-mutilate, that too also deserved punishment.

So the same problems, I got good grades in college classes, I was devout in church, even volunteering on retreats. I had never kissed, although I had a terrible crush on a guy for years, I hadn't even held hands with a boy except for once, and I felt so guilty! I had never, have never, touched drugs illegally... I wasn't out getting drunk, I did not spend time with people who did drugs or got drunk either. I didn't spend any time with any friends really... Except when they shoved me off to my best friend at the time, who had her son, Nick, she was friends with my sister, had gotten pregnant at 16, and they would constantly abandon me upon her. But I didn't mind, I loved her.

But I cleaned the whole house, I cooked for them, I stayed out of their way, I hadn't kissed a guy, I got good grades, I was nothing like my elder sister, how was I committing any of her errors? But my father listened for some reason and agreed. Shortly after I was 17 I was beaten and kicked out to my best friend Nellie... she'd lost her son by then. My father got away with beating me and kicking me out illegally, too, from the police and children's protective services. Amazing. No one wanted to see my bruised ribs, or listen to what had actually happened.

After that I thought I had a home with Nellie... until I turned 18 and she suddenly told me that she needed me out because she was trying to get her son back... but even before that- she had called me a slut when I had crushed on the same guy as she had and then changed my mind. I 'dated' him for a brief period, but he was too ashamed of me to even hold hands in front of others, so I couldn't handle it, and for that she, my best friend, my ONLY family at the time, called me a slut.... still hadn't kissed.

Then I thought I had found another home until I got news that that was insecure. Then I came to California on vacation and stayed here. I found refuge out here, expecting perhaps to be raped, murdered, left or dead or something... I was raped that first night, not left for dead, but he stopped though.

We were supposed to go to his house, and he made up a fishy excuse that his parents were arguing, so we went to a hotel. He was a nurse, and his scrubs and stethoscope were draped over the seat.... it felt all so planted and fake..... I knew I was being mislead, but I had no choice, I was here in his territory, I had been tricked, I just needed to survive until I could figure out a way back to Chicago.

The hotel was nice. He was nice. We hugged, it was okay. We kissed, it was less ok.... then other things happened and I began to resist, but he seemed not to notice. It was as it he took no notice to my complete and utter resistance to removal of clothing and being touched and kissed and such, how I cringed, cried, shook, whimpered, begged quietly for it to stop. It wasn't until I finally spoke up loudly, yelled for him to stop that it stopped. I had to yell. I was so afraid, expecting a hand to enclose my throat like my first boyfriend would have done, or to cuff my face, like James would have done to me.... but no, instead he stopped.

I was shaking from fear and trauma and he hugged me until I fell asleep. I awoke hours later alone in the hotel room alone.... It was freezing. My things were in his car, and he was gone. He had met me online, had me, and left. I went and took a bath to try to cleanse my shame, it was during this that I heard someone unlock the door. I was terrified that it was a friend of his, coming to have his own turn. When I came out in a towel and holding the hair drier as a blunt weapon I was surprised when it was him... He said he had had to help out at his house and had woken me up and told me, and was so sorry that I'd been worried. I cried as he held me again.

Even after all this, he approached me for sex again and again, even though I trembled and shook and begged..... When I finally asked him about it years later, he broke down as a man, degraded, like he should be, shocked... I hadn't been consenting? How could he have been so blind in the first place is what I wonder. Over the years I finally stopped begging, stopped fighting it, and got used to it... I guess maybe he forgot what was going on, though there were instances where I would protest loudly and it still happened.... and even with this, it was news to him on the day I left.