Oh NO! No Paxil, NO Neurontin again

I ran out again with no money to pay for anything. I was approved for Medicaid last week, but they are awaiting two pieces of paper, so I am not active in the system, and my private insurance was already cancelled. AAAAARRRRRGGGGGHHHHHHH. I was very anxious just thinking about what happened to me in October with withdrawal. I tried to get a 30 day supply with a coupon to get it free, but my doctor hasn't answered me, even as of today (I just called). So, right now I have gotten a week's supply of both for $30 to tide me over. I paid for it myself. Never a dull moment in cripville. I went away overnight to a friend's who is very funny, and she made me laugh alot, thank god. I was getting depressed again. I feel like my life is two steps forward, one step back, financially. No filling in for the school for two weeks now. No paycheck from them yet. No Disability benefits, no unemployment, But, I still have a roof over my head and a vehicle that runs. I can be grateful for that, and I am. I have been sober now, no drinks for 75 days (this time).

Neurological Poetry

Here's a couple more poems related to my disability. I have been told these are my best (the ones about my disability) because my heart is in them.


If I Were a Word

On the clean white page
At first glance you’d think you knew me
Monosyllabic, straightforward.

But upon closer examination
You would see dyslexia
Letters in reverse.

And when you gaze upon the lines and circles of me
Letters would bob up and down
On the horizon.

If you uttered me out loud
Your pronunciation would fracture
Like clashing notes
On a discordant scale.

Dissecting my phenomes
Will not help you label:
Noun, verb or adjective,
But if you must
Go with gerund.

Once you have stored me
In your linguistic lexicon
Will be afflicted with anomia
For I will have wormed my way into your cortex
Burrowing deep into Wernicke and Broca.


Neural Auras

Go tell tell Theresa of Avila
To tell Jean D’Arc to tell
Hildegarde that
Pablo has been here.
Rearranging photos
Again.
Why else
Would that dog
Have his wide smiling mouth
On the side of his head
Like a pink glistening wound?
There’s a small cobalt spot
Blinking off and on
In my right eye,
And here’s a lovely
Gold firecracker burst.
At night ghosts
Float and dance
In my headlights
And I slam on my brakes
For what really isn’t there.

There's more where that came from, if anyone is looking and likes them!

One of my poems--actually one of my favorites!!

Fighting with Frida

She offered me Tequila.
I declined,
I can’t hold my liquor.

We launched in without ado.
I was born dead, what more do you want?

What they did to me was unspeakable.
I was held up with steel,
Cut and braced, the pain was extreme she sneered.

Doctor tied me up and hung me
With weights and pulleys,
I screamed when he forced me.

Operated on without anesthesia
Plastered in casts for months,
They even withheld morphine.

You are wasted I said.
Besides they left me to bleed
Through stitches for days.

She threw Tequila in my face:
They cut off my head and
Sewed it back on!

They ripped out my beating heart
And held it aloft, I cried!

They made me eat my aborted fetus
She wailed.

We pull hair and scratch faces.
Bitch! She bellowed.
She hit me with her steel brace,
I knocked her silly with my crutch.

Get out of my life, I said.
Until we meet again tomorrow.


People have told me it is hard to know who is talking to who in this poem. I know that it is true--hard to tell, but it is a poem of one upmanship. I was the one born dead who starts off the poem. Enjoy!

Worked last week!!

I actually worked 3 days last week as a Special Ed aid!! I really enjoyed it too. The kids were cute (for the most part) but they aren't always. I swear they have invented new rules for reading and math (new terms) that I am not familiar with. It was hard too--more walking than I anticipated, standing too. I got out the crutches. Luckily they did not bother my shoulders the way I was afraid they would. I also tolerated the walking and standing alot more than I anticipated. Thank God I kept up with my exercises. All in all I had a good week, although there was some sadness I didn't expect--I was reminded of the isolation I felt growing up not being able to keep up with my class, and being the most disabled student in my school. It also reminded me that when I was first in school, I was very anxious. I don't know if it was social anxiety or if I was afraid to leave my mother. Who the hell knows.

Must be boring, or too full of self pity, or depressing

I was just reading some other blogs. I hardly have had any comments to mine. I guess it must be boring, too full of self-pity (of which I have too much) and too depressing. I should start to post some poetry. I don't know much about computers, hence I do not have pictures here, or any other interesting things to share. It is really just my rant about my life.
But, you know, it allows me to let it all hang out without censoring my thoughts, because I am anonymous. I still sometimes censor myself in my hand written journal in the fear that I will die tomorrow and my family will find it. Really, if you knew me in person you would not recognize the person who writes this, because on the outside I smile and laugh alot and appear upbeat most of the time. That is my persona on the stage of life. The great divide, the schizophrenic mind, the split personality between outer and inner. The Pollyanna that I was raised to be vs. the self-centered spoiled crippled kid who hates life because of my fate.

Denied!

I was officially denied Social Security benefits today, now I must appeal. This whole situation really feels like a circus. Yesterday and the day before I was so depressed about my situation and today I woke up in such a different frame of mind for no reason I can pinpoint, but it is a good thing. I could not have tolerated this rejection yesterday. Today, well, today is today. I woke up feeling good, and the sun was out. I filled out a job application for a day care center, and they were willing to have me come in for a "trial" with the kids to see how I do, but the pay was so poor, and besides the place was dingy, and smelled of urine. I didn't get a good feel there. So, no go even though I am desperate. I feel guilty but what good would it do to work in a situation I am not comfortable with that pays so poorly? So, more applying. Now I am applying for a part time reporter's job for my local paper. I don't have the experience writing for a paper, but my writing skills are good. We'll see. There is so much to worry about I can't even respond anymore emotionally. I think this means I am numb.

The Sun is Out!

The sun is out here today in Southern NH, thank god. I have volunteer work to do today, but I just found out that a job I applied for is already being filled, so it must have been an insider to take it. I am in a panic about my unemployment situation. I actually got a response from someone here about being a phone sex operator, and I tell you if I were that kind of woman (which I am not) I would do it, and make big bucks! I am waiting to hear about my appeal for unemployment. I think I am going to win, but who the hell knows? I got a call from the Social Security Disability people yesterday asking me about whether I met with clients in my last two jobs. That puzzles me. Why would they want to know that? Probably they want to know or think I am a therapist, and can continue to do that, but that is not the case. I was awakened by this woman and was not in my right mind. I wish I had been thinking more clearly. She said I would have a decision in a few weeks. This waiting game is very anxiety provoking.

Another Day of Unemployment

Another day of unemployment and not writing poetry, or anything else. Made a meeting this morning, did volunteer work and went to the pool. Slept too, which is what I feel like doing now. God, this is hard. I was hired by the local school district as a substitute aid, but they haven't needed me yet. I despair of them calling me. I am continuing to search for work. I paid 4 bills today, and now I am out of money again. It goes so fast. My oldest friend ordered me to start writing, but I don't feel motivated at all. Even if I began writing it would take me lots of time to start to make money at it. My mind feels full of anxiety which makes it hard to write. Those creative jices are dammed up right now. I feel useless and am trying to stave off the self pity, which I have enough for everyone and myself left over, usually. Trying to keep my chin up is getting old though.

My dreadful typing

God, I need to monitor my typos better. I was reading some past posts and I caught many of them. It is an indication of my impulsiveness and my stream of conscious writing that I don't notice them until later.

Making It

I have been hired by the local school district to be a substitute aid in Special Education. I an really happy about that, but they haven't called me to fill in yet, and I am anxious to go to work--to earn money and have something to do. I hope they aren't setting me up--no intention of actually havnig me work. I dont' think they would do that though. The obsession to drink is leaving me, thank God. Things are looking up for me. I am feeling much better emotionally. I had my appeal hearing for my unemployment benefits, and I think they are going to give it to me. I was given the time to get a statement form my PA in Orthopedics to write a statement that she didn't feel I should go back to my job, and she was more than willing to do that for me. I should have an answer soon.

Another Day

Today I have my hearing for my appeal for unemployment benefits. I am nervous. I am afraid I will crumble and get really nervous and tongue tied. On the other hand, I know I will survive it, I just can't wait until it is over. I am officially hired in the local school district as a sub paraprofessional--as a special ed aide. Now I have to wait for them to call me to come in. It is not known to me how often they will call. How can I tell? It will be a day by day thing, but it is something as opposed to nothing at all. I am nervous, but happy. I just finished Harriet McBridge Johnson's book, "Too Late to Die Young." Although I am probably just as smart, she is muc h more outspoken and confident. I would like to have her balls. I enjoyed the book very much and think people could learn alot about disability rights and living with a disability from it. I didn't like the part about the NY Times Magazine. In the end she gave in to them about the pictures of her they wanted, despite the fact that she told them no on the issue multiple times. She sold out to them. I was looking her on the web for the pictures but haven't found them yet. We disagree on many things, Harriet and I, but I then all of us are not the same and cannot be lumped together. For instance, I believe in assisted suicide and I also think that Harriet should not have agreed to debate with Peter Singer. He is a dangerous man. A very dangerous man. If I am in a vegetative state I want my feeding tube removed, I don't care how much our society improves in including people with disabilities fully into society. I ahve seen too much in my work life, particularly in my last job a a social worker in a pediatric home with severely disabled children. I believe in personal choice. There's my lecture for today.

Things are getting better, maybe

The good news is I have a temp job that I have now had for 12 days. I don't know how long this will last though. I am working on a special project that is time limited. I had a bad day there though, so I am discouraged. It has become clear to the supervisor that I don't always learn things quickly and I made a dumb mistake that really upset her. I feel so stupid, even though I know I'm smart it's just that sometimes I need tons of practice to get things right. Details with paperwork are hard for me.
I have been going to tons of meetings because I want to drink. I have been dealing with cravings for a month now. Ever since I had thwose two glasses of wine. Things are not settled, and are not easy right now. Still. Sometimes lately I feel so depressed. I am trying to so hard to keep going.

Still hanging in there

I haven't looked to see how long it has been since I have visited here. Things are OK, but the last week or so has been hellish. I ran out of my antidepressant and didn't have the money to get more. I started going through withdrawal only I didn't realize that was my problem. All I can tell you is that my anxiety level shot through the roof, I wasn't sleeping well, and I was having night sweats and then shivering. (Sometimes in the day too). I started to think I wanted to be dead. I thought my problem was what I was going through. I gave in and put the Paxil on my credit card because the local mental health center didn't have any in stock when I went there. I just needed someone to help me, and it felt like no one could or would. Just when things were bleakest a friend called and offered me a temp job in her office. Well, her boss offered it but I found out from my friend first. I will be there until Thanksgiving. I also have a job interview on Wed. of this week. I am hanging in there, day by day.I won't tell you it isn't difficult. A you can tell, it is.

Desperation

Still unemployed, and getting more depressed. I am finding it hard to get up in the morning. Despite those feelings I am keeping busy. I have 3 volunteer jobs now. My bank account went below zero yesterday, and I have about $57 dollars to my name. I went to visit a friend for two days, and had wine at dinner with her and her husband. Then today I got home and got a call from someone more desperate than myself. An alcoholic who has been actively drinking and is now very depressed about herself. She signed herself out of the hospital. No one has ever called me like that before. I did the best I could with her but I felt like I was floundering. I made an agreement to meet her later for a meeting. God, we feel like shit and then someone comes along who is in need of even more help.
My spirit is sad. I need help for myself and my Higher Power put an opportunity in front of me to talk with someone else about why it is important to stay sober, and how to do it.

Still Unemployed, Continued

I am still unemployed, but I have a job interview next week at a local college as a counselor for their students with disabilities. I am very excited that someone finally called me back! They are the only ones, out of the nearly 20 jobs I have applied for. Last week I was quite depressed about my situation, with lots of drinking thoughts. I went to many meetings to help with that, and I didn't take a drink. I have applied for every form of financial assistance I coule this week and last. Food Stamps, Fuel Assistance, Financial help from the town. It was so hard to do that, it felt demeaning. I have always wanted to be independent and take care of myself. This kills that. I haven't heard back from any of those agencies. Meanwhile my bank account is slowly headed to zero.
This is the most frightening place to be. I need a job very soon. I am working hard at it, there is no doubt about that. I hope to be able to report that I have one soon!

Damn it to hell

This has been a tough day. I realized I had better go to the welfare agent for the town and apply for welfare. I have an appointment with her for Thursday. It felt so humbling. What I really want to say is that I felt embarassed and humiliated, but then someone at a meeting tonight told me that I needed to learn the difference between humility and humiliation, and that it will only humiliate me if I let it. I wanted to drink today. So, I went to a meeting. Then coming out of the meeting someone called me over to talk with me, and I lost my balance stepping off the goddamned walk and fell. Naturally I put my arms out to break my fall and it hurt both my shoulders. Damn, fuck, shit and piss me off. I need for my shoulders to get better. I had a really good PT session today, it really helped and I felt so good. Instead of drinking I bought a huge ice cream and ate the whole thing. Incidently it was also my dinner, since I hadn't had dinner yet. That is my rationalization for eating the whole thing. I wanted it to take me out of myself and it did.

Wow someone likes this site

Thank you Johnny Canuck. You left me a message telling me this site rocks. I don't know why you think that, but it gave me a lift. Yes, if enough people tell the truth maybe it will help. But, really my writing stinks here I think! It really is just stream of consciousness whining. Thank you for your compliment though. Yes, I want to tell the truth to people, that is why I started this--I want people to know the daily struggles of life with a disability. But if feels so self indulgent. If you met me you would see that I am in fact quite functional, I just walk funny. Compared to others I have it easy. Actually, some days I think about how people don't see my struggle because it doesn't look too bad.
It is often alot more obvious with people with severe disabilities, but that also comes with its' own price. I wouldn't want to trade, trust me. I will deteriorate soon enough with age, and end up permanently in a chair, probably. God, every day practically I want a drink, but I don't drink. It's hard. Reality is tough stuff. I accept myself more though. If I didn't I wouldn't even be able to apply for disability benefits.
I would just push on through and continue to get injuired.
Thank God, AA is keeping me from drinking.

Feeling Desperate

I am feeling desperate today. I still do not have a job. I am very low on money and just got my first bill for COBRA coverage. I have to pay at least 2 months right now, possibly 3 right now. It's not my fault they didn't bill me sooner and now it's all due.
I still do not have a job. I keep applying. I keep applying.
I have to remind myself that I haven't given up. As long as I keep trying.
I am feeling panicked though. A relative is helping me money wise, but it is not enough for all the costs I have. I don't want to admit this to my relative. I only asked for what I would get if I were on disability so that when (if) I get approved I can pay her back. Augh. This feeling feels awful. I am not sorry I left my job (because of my supervisor) but this is new territory for me. Major economic insecurity. Major. There is an office job locally that is every other weekend that I have seen and I don't want to work weekends, but I may have to bite the bullet and apply. It's not much money, but it would be something, which would be better than nothing. This is really hard.

Discouraged

I am feeling discouraged today. Actually I am discouraged for some part of every day. I don't have a job. I got a call for one today, but the physical requirements were not clear in the ad in the paper, and I knew i couldn't do it. CRAP. I feel like I will never get anything. I don't mind not working as long as I can keep busy (which I can) but I need to make some money. I will be in deep shit in about a month from now. Perhaps I will apply for welfare. I am not beneath that, just so I can survive. That is all I want, for now. I just want to be able to have enough so that I don't have to do (I don't know where this is headed). I don't want to live an extravagant life, I just want to have enough to survive on. I'm too overqualified for the stuff I am applying for. That is my problem. But, there isn't enough human service jobs out there for me to apply for that I can actually do. SHIT. This is a very un 12 step like attitude to have.

Not Working Yet

This is week 5 without a new job. I know I am applying for jobs that I am way over qualified for and probably these people are wondering why the hell I would want to work their part time jobs. I mean I don't even get calls for interviews. I have started putting on my cover letters that I am applying for part time work due to changing life circumstances. I think I need to put that I need to keep my earnings within certain set guidelines. Then maybe they will read between the lines and call me in. This is harder than I thought. I am used to applying for full time work being difficult, I thought this would be easier because I thought my education and experience would go further in showing that I am a dilligent worker and can be trusted, etc. But they really mean they want a high school grad when they say that. We'll see. I have to keep my spirits up. I am discouraged though, and trying to put a good face on. I went to the library and took out a book on how to work at becoming a freelance writer. It's hard to break into as a field. It wouldn't be something I could make money at overnight. I need to do some free work and build up a portfolio to have something to show for myself. Then I have to think of things to write about of interest to me and to others. What if I really am a lousy writer and don't know it? I don' t even want to go there, but it is my fear.

Still Unemployed

Here I am still unemployed, week four. I am looking, sending out resumes, but not even getting calls. It is depressing. I don't mind not working, and I can last another month without working, but I am getting nervous. I realize the jobs I am totally over qualified for the jobs I am applying for. I am hoping that that is the only reason I haven't heard from anyone.
I still haven't heard back from the advocate I was directed to for my discrimination complaint.
At the end of last week she was working from home, so maybe she is not feeling well or not able to get to work. Life is never dull.

Creativity

I woke up at 5:30 and couldn't get back to sleep, so I got up. I am feeling creative today. I started an art project over a year ago that I have not finished. I started to paint an old pair of shoes to represent how I felt about my feet, and my disabilty, but I never finished it because it became too painful, emotionally. I wonder if I can finish it soon. I have old sandals and another pair of old shoes. I was going to paint them all as a series. I hate it when I lose my motivation. I get excited about new projects but then they go bust, or I go bust. There is a part of me that wants to just stay home and be an artist. What money is there in that? None. Unless you are incredibly good and can sell yourself and your stuff. It's nice out today. I have to go outside. I am getting stiff from sitting more. At work I was always up and down. I just pushed my way through it. Like all of my life, just push on through like a blind mole in an underground hole.

Weeks 2 and 3

I have been keeping myself busy looking for a part time job, running to appointments, and filling out myriads of paperwork: for the Medicaid people, for the SSDI people, for the unemployment office, and for MCAD--Mass Commission Against Discrimination. I visited MCAD last Friday and told my story to a worker there. She gave me paperwork to fill out, and an advocate to call. I have been playing phone tag with the advocate. The story of what happened to me makes me want to cry. I dream about work every night. Last night I dreamt that my old supervisor yelled at me in front of a classroom full of people and I called her on it. Most nights, however the dreams are about the kids and young adults I left behind. Today I got my pictures of my last day at work. I looked at them once, quickly and put them away. They are painful to look at.
I feel as though I will be swallowed by my depression and grief at times. This is a huge change for me--to be unemployed and to be applying for disability benefits. The jobs I have been applying for, some of them, anyway, are way beneath my skill level but I have to tell myself it is OK. It has to be--whatever I can do or get hired to do I can't make a lot of money at it because of the SSDI application. Acceptance, acceptance, acceptance. That is what 12 Step Programs teach. For me it is key to maintaining sobriety. Accepting myself and my disability. But sometimes I hate that I have to work so hard at accepting my life, and what I have been asked by life to accept. Some days it sucks.

One Week Down

I know have been out of work for one full work week, and it feels very odd. I kept myself very busy last week, although what I most wanted to do was sleep I felt so emotionally exhausted. I didn't let myself as I was afraid to get too used to it. There is a part of me that is really fearful about all of this. I applied for disability benefits last week. I also had 3 doctor's appointments and am being sent back to Physical Therapy. (On my last day of work I went out to eat with friends and as we were leaving the restaurant my foot got caught between two bricks in the sidewalk and I fell, reinjuring both my shoulders. They both really hurt. In addition my Neurologist wants to see me or he will not prescribe any more Neurontin for my nerve pain, since he hasn't seen me in over a year. Oh yes, and my cats are not well. One has some kind of injury on her foot and the other is showing signs of a UTI. Just goes to show--it is a good thing I quit work or my supervisor would be beside herself right now.
I am trying to come up with things for me to do so that I don't just vegetate here at home, and lose all my motivation. I don't know what it is I want to do althought god knows how many times I have said I want to write. Well, here is my chance, but I must be dilligent and work hard. I must be disciplined.

Only 3 more days

I only have 3 more days at my job before I leave for good. I am so glad to be leaving my supervisor, but not the children and families I work with, or my co-workers. My co-workers are wonderful people as are the parents. The children are wonderful too--each in their own unique way. They have taught me so much about being human and being beautiful despite what the world at large may think. I am still looking for a job. I think I am going to apply for disability benefits which would then allow me to work part time and not be so exhausted constantly.
I have to admit I am afraid. I am stepping out into thin air. I was very anxious last week, and very sad. I will admit here and now that I had a slip in my sobriety--ingesting some products that contain alcohol, but can be found in the drug store. I could therefore tell myself that I wasn't really "drinking". This alcohol thing is insidious. I have now set myself up for wanting more, because it felt good. One day at at time. I am going to more meetings this week and I got a 24 hour chip last night at a meeting. I took it to work in my pocket and everytime I thought about alcohol I put my hand around it. This leaving of the children and families and my friends at my job is very painful.

I Quit

I finally decided that I truly had it at work, and I quit my job after I couldn't get my scooter out of its storage space in the morning because I was boxed in, and I found my supervisor being sarcastic to me about my being 10 minutes late getting to my desk. I don't need that kind of difficult time. So, I quit, without another job. I am totally out on a limb at moment. I am working on finding another job, and I have one prospect at Voc Rehab. My Voc Rehab Counselor is retiring and has put in a word for me with the supervisor. (I went to see him in May when I was out on leave, to tell him I needed a new job, and the predicament I was in with my spervisor). I am hoping that that comes through for me, I think it is my best shot, to have someone introduce me, and to also work for an agency that works with people with disabilities. Well, actually I work at one of those kind of places now, and it does not help me any with my supervisor!
Actually, there is a part of me that would love to win the lottery and stop working all together! Me and everyone else, right?

I started this blog because I thought I had something to say about living a life with a disability. It seems that in fact my life is boring. I don't have as much to say as I thought. Now a newspaper reporter in my area wants to know who in the area blogs. I don't know if I should come forward, but probably I will. I am self absorbed really. I want people to know what I think, but at the same time, I don't know if I want someone I know to read this. Being anonymous is kind of fun. It allows me to say what I really think.
I have gotten information from the Disability Law Center in the state I work in, regarding having been on medical leave. I cannot be treated in a retaliatory way because I was on leave. So, I was right to tell my supervisor that telling me that I cannot go to medical appointments during the day, was illegal like I said. Things continue to be difficult there at work for me. She will not give me a break. I went out today and bought an "interview suit". I am trying to be positive, thinking I will go on job interviews soon. I am trying to keep my head up above water. In truth, I really started to feel depressed this week about my situation at work. I am trying to not let that blackness get me, but god this week was hard. I just pray that a job will come my way soon. Going to my current job is torture. Sundays are the hardest because I know the next 5 days are coming.

Rant on the boss

I am blue right now. But I am trying not to be. I am in danger of being fired from my job. I was" written up" for some documentation errors that my supervisor found in my absence while I was recovering from my surgery. The next step is either a "written plan" or termination, depending on my next infraction. My supervisor has been on my back for a year and a half. She has been breathing down my neck for small things. She has been calling me into her office and yelling at me, being snide, sarcastic and hostile. She has been angry about having to accomodate me in the workplace. Now she has to accomodate me more because she tried to tell me I couldn't have anymore time off, for medical appointments, of which I have 3 coming up. She refused to negotiate that, telling me I had to go at 6:30 a.m. or 6 p.m. even if the offices weren't open, I had to negotiate that with them. I told her that was illegal. She got very upset, leaving the office in a huff to talk to the administrator. They came up with a plan whereby now I give all my appointment times to the admistrator and have to make up the time, which is what I offered to do with my supervisor, and she declined. God that woman! She has been on me for a year and a half. I am speaking with a lawyer tomorrow. This is a facility that works with people with severe disabilities for god's sake! I have pages and pages of notes of how she has treated me: dates and statements and how they were made, etc. Life with a disability is never boring! It is filled with frustrations and pitfalls of all kinds.

Cloudy

We are again having a cloudy day here where I live. It's cool too. We are all sun deprived. I start back to work tomorrow for two days. Then, next week it is back full time. I was totally hoping to have some miracle happen to me and not have to go back at all, but there it is--time to return. I so don't want to. My boss is horrible. She has been on a roll to try to fire me or get me to quit in the last year and a half. I cannot stand her temper, her yelling at me, berating me, and treating me like crap. I have been trying to find a new job, off and on now for the past year and a half, with no luck. I will get a break, I try to tell myself. The right thing hasn't come along yet. Something really good is out there for me, I just don't see it yet.
My shoulder is still recovering from surgery. I am going back to work only part time for this week as a compromise. The person treating me would love it if I stayed out two more weeks but I won't get paid anymore if I dont' start going. My mother is willing to help me financially, but when I told her I wouldn' t get paid if I didn't go back, she got very anxious and said "What are you going to do you have to go back!" I should have just asked for the money to cover two weeks and let it go at that. My right shoulder is now giving me difficulty because I have been using it to compensate for the left. I can't afford to have that one go right now. Enough whining.

Home

I have been poor at documenting my experience at hone since I have had my shoulder surgery. This is week four. I have to admit I am getting used to it. Initially I was really upset about all the time to myself. I am finding that I can entertain myself and enjoy my own company. I am finding that I don't have to work myself to death to keep away the dark sense of being alone. It certainly has been a challenge to adjust to not being able to use my arm normally. I have been a good dooby and have been doing my physical therapy. I have been thoroughly trained from childhood on to work at getting better and not to neglect my exercises.
I am finding out all about daytime TV for sure. "Ellen" has the best talk show.
I am feeling so normal without the exhaustion of my usual schedule. I think I am done crying--I have been rather weepy the last couple of weeks. I don't know, just feeling like I don't know what is going to happen to me, or feeling unmoored, or something. I am applying for Medicaid. I have found that even though I work full time I am eligible for Medicaid which I would have as a secondary insurance. I will have a Premium but at least it will be cheaper than what I pay out of pocket now for co-pays. It felt really humbling going to Social Security and Dept. of Health and Human Services for help.

Ellen's the Best

Now that I have been home for an entire week, I can say that Ellen DeGeneres has the best talk show going. She is funny and smart. Today she had on Paris Hilton, though. I couldn't help but wonder if Ellen was thinking "What a Bimbo Slut" the whole time. She (Ellen) had her mother on today. She looks suspiciously like David Letterman's mom, I must say. Maybe they are interchangeable. This is what my life has been reduced to in one short week! I am kind of enjoying being home. It is such much more relaxing than my crazy schedule of working full time, going to the gym 3 times a week, singing in chorus and going to AA. No wonder I am exhausted usually. I wish I could get off this treadmill. Part time work would be good. Gotta go--my shoulder is sore from being on the Internet.

Desperate Housebounds

I think I will write a new show called "Desperate Housebounds" after being home for 6 days without going anywhere after my shoulder surgery last Fri. This has been really hard, although today has been much better. This being homebound sucks. I couldn't do it full time, I don't know how people stand it. It has brought up so many painful feelings of isolation from my childhood surgeries. I don't want to say goodbye to anyone over the phone or in person. I don't like feeling so helpless and needing so much help from others. I felt so sad until today--I don't even know why. Walking with one arm in a sling threw off my balance, which I didn't even think of before the fact. I have this fear of growing older and becoming more disabled. On the positive side, other than my arm the rest of me feels better not running around so much and overdoing things. I am glad to be out of work for a week. I need a new job. It would be wonderful to work just part time.

At it Again

I don't know what this title means. Really all it means is that I am typing here again I guess. Well, 10 days until I have my torn rotator cuff repaired. Life is getting more and more interesting. I am nervous as I haven't had surgery in 30 years. It brings back such old crap. I am anxious about the anesthesia and the length of recovery. I will be out of work for a week, which in many ways is not bad at all. I am just afraid that I will feel too isolated and get depressed. I am looking forward to the break from work otherwise. Life with a disability is never dull!
I have been able to get up and read a poem at an open reading twice recently. I hadn't been able to do that in a couple of years. I had a spot for 15 minutes of just me reading a few years ago and I tried to do it standing (like always) and my legs started to tremble and I finally had to ask for a seat. I have felt too self conscious to read again. But, I have been able to get up, and not only that I am much more relaxed about the idea of people watching me or seeing me walking, (a lifelong battle of self-consciousness that I have fought). The key is self acceptance, I am finding. I have gained alot of that recently, and I have AA to thank. I have finally been able to give myself positive feedback and feel OK about myself lately!

Last wishes

I askd my sister today if she wanted to be my "HealthCare Proxy" because I don't have one, and I don't want to happen to me what happened to Terri Schiavo. I told her I do not want to be resuscitated if my heart stops, I don't want to be put on a ventilator unless it is for something I may recover from, like pneumonia, and I am lucid. I told her if I was in a coma or an irreversible state that I didn't want to be kept alive with a feeding tube. I want to either not have one inserted in the first place, or I want it removed. My mother butt in with comments about people who come out of comas after years. I pointed out that what they don't tell you is that the people don't come back fine. I told them that Terri Schiavo was brain dead--she had a flat EEG. I don't want to be kept alive that way. I see too much in the health care facility I work in. We have gone way too far in keeping people alive when we should let them go. We were not meant to live on machines. The medical profession has not done anyone any favors with technology. We need to die when it is our time to die. It is our time to die when our heart or breathing stops, and when our brain stops. I told them my bottom line is I do not want to come back more disabled. I am a disabled person who believes in free choice to go when we want to. I agree that the biggest problem with a disability is the inaccessibility of society, but unless we had such open accessibility and are fully accepted into society, I don't want to stick around. I have had enough medical intrusion and treatment in my life.

So Frustrated

I couldn't acess my blog: Criplife, so I have created Criplife2! I tried some of the remedies listed in "help" and etc., but nothing seemed to be working and I was too frustrated to keep at it, since I don't know alot about computers to begin with, like playing around with cookies, etc. I deleted a bunch of temporary cookies, and changed some settings, no luck. I am still me, a 44 year old woman with Cerebral Palsy, trying to make my way in this world, with frustrations and some fun experiences in the crip kind of life.