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.
