Still, not good enough.
Time will crawl
(whoa! the date and time are correct! 3:27pm 3/31/12)
I got through the month, somehow. At this point I'm starting to freak out more than a little bit though. I haven't been further than my mailbox since mid January, aside from the trip to the ER, and the way it's looking I won't be able to until June. Being poor with a disease sucks. If I could just buy the damn chair outright I wouldn't have to go through the crap the insurance people are making me go through, including the wait. Shit, by the time I have the damn thing it'll be too hot to leave my damn apartment anyway.
MS awareness. Right. Whatever. I'm in fucking pain. I'm pretty fucking aware of it.
I still hate hospitals.
(3:04pm February 23, 2012)
I'm doing fine, aside from the fact that I still have PRMS, or so the ER says ...fine enough to not be in the ER, follow up with your Doctors if you want to figure out why you've been having trouble breathing and walking.
Thank you very much ER, it was a simply delightful 28 hours, especially the 12 I spent on the gurney in the hallway in front of the ambulance bay.
I hate the US healthcare system. I hate the majority of doctors and specialists.
NURSES ROCK
I've had better Februarys.
Onward.
I hope that everyone ends up having a wonderful new year.
I think that we could all use one.
(12/31/11 2:17pm)
this too shall pass
My life is changing. I don't know if it's for the better or not. I hope that it's for the better, but I fear the worst. Fear is the mind killer. Right. Sort of like MS.
(2:27pm 12/18/11)
Surviving.
7 years ago today I had my very first MRI.
Progressive Relapsing Multiple Sclerosis.
7 years ago today, my life ended ...on so many levels.
Today though, I am still undead.
undead undead undead
(11/29/11 2:42pm)
hang in there, buddy
The really cool thing about being God is that you can travel back through time to any year and help yourself through it.
not happy or thankful
Alone = Having no one else present.
Please try to get it right, but if you can't, don't electronically tell someone who's actually alone today that you're "alone today too" when you have seen or will see another human being within the last and/or next 24 hours.
Got it?
Good.
Now, kindly go fuck yourself. (After all, you can actually feel comfortable doing that when you're ALONE.)
10:09am 11/24/11
...and here we are.
Today I decide whether or not to continue with tblog. I'm very torn. Part of me wants to, but the rest of me is frustrated by it still. No changes have been made to the site since 2006. The ability to back date things is still not offered, and too the ability to screen comments isn't an option. It's just too risky to allow the public to comment without my screening what shows up on my page first ...but I want to leave it open for people to comment. I can do that elsewhere, but not at tblog.
Starting over again with yet another blog though; does it even make any sense? Is adding that stress into my life something I really want to do? What is it that I'm actually trying to achieve?
(11/23/11 7:29am)
October 4, 2011
I amuse myself. Y'know... thousands of people, if not millions, have seen me cross-dressed ...and quite a few of them fell in love with me that way.
MS re-interview
@8:30am 9/7/11
A few years ago, I wrote this: http://cutter.tblog.com/post/... I thought that I should update it, so... here goes
How long have I had MS? - probably since birth
When was my first "flare"? - June of 1983
When was I incorrectly diagnosed? - 1986 (Mental Illness)
How long have I been "disabled"? - Legally, since 1994.
When was I correctly diagnosed? - 2004
What type of MS do I have? - Progressive Relapsing
Which "drugs" have helped to treat my symptoms even a little? - Moderate amounts of light beer daily. Atenolol. Vitamin D.
Which drug has most recently had the worst results? - Cymbalta. The pain was excruciating. Although I did almost end up in the ER from Verapamil.
Which MS specific drug therapies have I tried? - None, aside from repeated Solu-Medrol treatments.
Which MS specific drug therapy would I try? - Any which have been proven to work with the progressive forms of MS. Right now, there are none, but I'm considering Low Dose Naltrexone.
Where do I think MS "comes from"? - I think that it's from a combination of genetic and environmental factors.
Do I have any family members who had or currently have MS? - Not that I'm aware of, but it wouldn't surprise me if I found out that some of them did.
Do I have any family assistance in daily life? - No. None whatsoever.
Do I have non-family assistance in daily life? - I have a friend who helps me out for a few hours a week and takes me to doctor's appointments, and another who often makes phone calls and does whatever else she can do from afar.
What is my most debilitating (seemingly untreatable) symptom? - Paranoia.
What is my "lesion load"? - According to my last Radiologist's report, innumerable.
Do I have any areas where the lesions have "burned through"? - Not that I am aware of.
How was I diagnosed? - MRI and multiple tests, after losing my vision in my right eye because of Optic Neuritis.
Why wasn't I correctly diagnosed sooner? - They judged me by my unconventional appearance and declared me "mentally ill". They ignored my physical symptoms, and helped me to write them off as well by telling me that I was having "body memories" due to past/childhood traumas.
Do I think that MS is going to kill me? - I think that it is highly probable, whether it drives me to suicide or destroys the "wrong" part of my brain, it'll probably be the MS which is the cause of my death.
Has MS ruined my life? - Absolutely, but it had the help of many incompetent health care professionals and uncaring, judgmental family members.
Do I have other diseases or disorders, aside from MS? - Yes. I'm diagnosed as having Dissociative Identity Disorder, and a Chiari I malformation has been appreciated by Neurologists, a Neurosurgeon and many Radiologists.
How can I tell the difference between an MS symptom and a Chiari symptom? - Often, I cannot.
Do I think that they will ever find a cure for MS? - Probably not in my lifetime.
What is the one thing which I think most increases the rate of the progression of my MS? - Stress.
August 28, 2011
552pm 8/28/11
If something gives you pleasure, as long as it harms none, in your own opinion, don't let go of it without fight. There's nothing more seductive or desirable than that mentality.
...and after 17 years...
I think that I'm finally understanding what MPD/DID actually is. I really need help. This is completely brutal.
I am what I am. Yeah. Sadly.
The depression is heavy. I'm very close to blowing what little money I have on scratch tickets. What other options do I have? How else can I change this fucked up excuse for a life? It's "Pride" today in Philly. That's where I belong. Not here. There. Not alone. With Michelle. Not suicidally depressed. Enjoying my life.
Ouch
I listen to people, every day, for hours and hours. It's called reading.
Even if I stub my toe, there's no one here to hear me say ouch, except for a few hours a week.
I hate that people don't comment on my blog.
I hate that there's no one here.
I hate that every chance I get I talk and talk and talk ...as if I hadn't been heard in days.
April 6, 2011
...and so I say, if I could do it again I would ...and so, perhaps I will be born again into this life and have this again as my lot. To that, I say, "It's worth it."
For you, for then, for this ...it's worth it.
I mean ALWAYS.
March 16, 2011
I'm doing so badly right now that I'm all but PRAYING. Scared. Suffering. Just wanting to know what to do! what to change! how to GET WELL!!!
February 15, 2011
2/15/11 5:41am
I "belong" to no one and to anyone I choose to belong to, for however long I feel like belonging to them. THAT is the truth.
Lives gone by.
Reassuring/validating my child self is easy, knowing what I know now about kids and parents and adults ...doing that for my teenage self is also easy, given what I know now. My 18 - 25 self? Not the easiest thing up until recently, but last night, when she said, "I love you, Cris."? Wow, did that ever feel good. Wound closed. Fuck all of you. She loved me.
December 8, 2010
Therapeutic epiphany:
I don't miss anyone. It's no one's fault that I hurt. I have MS. I feel things intensely and for no reason. What I truly miss at this point is feeling healthier.
It wasn't your fault Drue. I'm sorry that I blamed you for my anguish, even though you never really knew that I did.
November 25, 2011
Being this sick is not cool ...not cool at all. I really need to just stay the hell away from people. This sucks.
October 8, 2010
I refuse to give up.
drops of jupiter
9/27/10 5:07pm
and then, it all fell down...
I was laying there, having chemicals pumped into my veins...
It's when the hope I had ...the delusion I was suffereing from...
fell away.
At the end of the day...
all I had was me
Me against the world.
...'cause you weren't there.
August 10, 2010
Pack the smokes on the thigh ...smacking the blood stains ...more than daily ritual.
All I ever wanted
All I ever needed
was all I lost.
After the quest was completed...
It's amazing just how many of these people suddenly mean absolutely nothing to me.
HRT+MS=
It's been years since I was in this much pain. EXCRUCIATING
Have to stop the shots again, have to find out if it's what's causing this.
I can't make it through if this doesn't stop. This is not endurable. It's INTOLERABLE!
May 11, 2010
I haven't written in my journal in way too long. I wish that my printer worked better and that the ink cartridges were more affordable ...and that this computer had a half decent word processing program, so that I could use it for journaling again. I miss writing ...journaling. The internet can be damn rough on the ego, and pen and paper just aren't what they used to be anymore. My hand and brain and eyes aren't what they used to be aymore.
I'm not what I used to be anymore.
April 3, 2010
...and the heat invades. I sweat. My brain swells. I can do nothing to stop it ...or so I feel. I struggle to breathe. I struggle to think. I struggle TO LIVE.
March 30, 2010
Guess I'll actually get drunk tonight. Every so often, it should be ok. Medicinal beer is necessary, but sometimes I just want to enjoy it for the sake of it. I'm so tired ...tired of all of it. I just want to sleep, and to wake, and to live without PAIN.
February 8, 2010
I really miss my blog right now. Facebook is ok, but it's not the same. I dunno. I guess I miss journaling. I miss writing ...no holds barred. I miss being able to SCREAM.
January 26, 2010
I'm dying, and I'm dying alone. How fucking Goth.
December 18, 2009
I think that I'm leaking... urine. Yeah, fun stuff. I can only hope that I am mistaken, but I don't think that I am. Yeah, welcome to the next phase of living with MS ...or dying with it. fuck.
November 7, 2009
It was the Hydro. All of it... from day one, back in January of 2008. Now... to get through this. HAVE TO GET THROUGH THIS.
October 7, 2009
Ten years ...more than ten years. More than 10 years it took me searching, combing, setting things up, waiting ...hoping. More than ten years to find the ONE who had all the right responses ...all the right replies ...all the right comments ...all the right words. ...the one who knew the code... Yeah, because I GAVE IT TO HER!!!
September 8, 2009
312pm090809
I'm so scared... so tired. I'm just getting sicker and sicker. The depression is above and beyond what I've ever dealt with, as is the paranoia... and the fear.
..and I'm so damn alone ...too alone.
Hurting
I don't want to even think about this being over. ...but I feel devastated. ...beyond devastated.
Obliterated.
It came damn close.
1pm July 9, 2009
Again, I feel nauseous. I cannot recall ever experiencing this level of depression... this sense of doom. There seems to be no fixing it. I feel like all my hope is gone. I feel like I'm not going to make it. I feel too much.
breaking down
3:15pm 6/20/09
I feel nauseous. A big part of me just wants to completely break down... shut down... no more I love yous... no more forevers... no more waiting or hoping or planning... no more commitments... obligations... plans...
I'm fucking sick!
I NEED!!!
May is always May.
4:56pm 5/27/09
Hanging on with every ounce of strength I can muster. fuck. one year, I simply won't make it.
