Post Holiday Update

I am soooooo glad to be out on vacation this week. Middle school is really, really hard. Those kids were giving me such a run for my money, and I find myself becoming someone I don't like when I am trying to keep them in line. Some days I feel like such a failure at it. I think elementary school is more my speed.
I had a nice time with my family over the holidays! This is a first. My mother was calm, not "hyper" and getting angry over little things. All the kids were well behaved.
When I was leaving my mother wanted to give me a box to put all the leftovers in. I told her I needed bags, that a box would be too heavy. (Not to mention I need my hands to help me get into my house from the garage). She then packed it all in one bag and said: "it's not heavy". To which I said: "Maybe not for you" which pissed her off. It just amazes me that she is so out of touch with what I can do and what I can't do. She worried about stuff with me that she shouldn't, but then she totally misses the mark when it comes to some of what I can and cannot do. It's very confusing to me, which it always has been since childhood.
I have to get off this computer. My neck is irritated and my fingers are jumping around of their own accord because of it. It is so weird!!

Calling every middle aged person with CP

The other day I was talking to my doctor and then my therapist about being middle aged with CP and the lack of information about living with CP in middle age. I sure would like to know what others are going through, or not as the case may be. I found out recently that part of my left lung has collapsed. I wonder how many others out there have had this happen to them.
My therapist urged me to find a website that deals with the subject. I don't know of any. I then realized that maybe I could attract people with CP who are middle aged. I don't know how to do this though, except so far I changed the name of this blog to perhaps get more people with CP to see it and perhaps comment. I am feeling alone with my disability right now. That happens alot.

Life in Middle School

Life in Middle School is very interesting. I learn new things all the time. Not just social, or about myself, I learn new academic things, or am reminded of old information that I forgot. I had a very interesting situation come up this week. I was sitting in front of the 8th grade on a stool, in front of a podium stand. I went to get down and I had to lean forward since my feet don't reach the floor--I am too short. Well, I leaned forward and my boob got caught on the corner of the podium stand, and it was now poking me. I tried to move, but two legs of the stool came off the floor. I felt alarmed and looked alarmed I am sure.
There was a boy sitting right in front of me who saw this and he looked alarmed too. I very gently put my weight back to get the stool down and my boob off the corner. The boy said: "Mrs. T. from now on you should only sit in that chair" (He pointed to a folding chair that someone just vacated). It could've been a disaster! I could have given myself an unintended mastectomy, I would've made a scene! I'm so glad I didn't fall. Just a note: I am not married. Despite telling the kids that I am a "Miss" they call me Mrs., even some staff call me Mrs. People just assume that all adults are married. In a way I don't mind: let them think someone loves me enough to marry me.

Handicapped Heaven

The really good news is that I have a new job! It's a part time job at a local middle school where I am in charge of 3 Academic Studies classes. Basically, it's study hall, but I have to give these kids grades! It has been quite a challenge as I have never been in the role of disciplinarian before. My job is largely that: getting kids to get quiet, and do some work. I have been on the job for about 6 weeks now. My 6th grade class is very challenging. It is only part time, but boy I come home feeling like it is a full time job, often. I don't nap every day now (I did at first) but when I do take a nap, it is 2-3 hours long!
I titled this Handicapped Heaven because of how wonderful everyone has been to me. When I first got there my team advocated for me to get a classroom moved so that I wouldn't have to go outside and across the parking lot to the modular classrooms! They asked me my opinion but basically they made it happen for me! Then one day I was hit by the little yellow Special Ed bus (there is some poetic justice in there somewhere). I didn't have a designated parking place. By 11:00 a.m. that same day (read Same Day people) I had a handicapped spot set for me. Usually these things involve writing things up in triplicate and waiting 6 months for someone to do it. I have never been treated so well on the job! Amen!

She's Gone, Gone, Gone!

Wow, I didn't know it had been so long since I had been here. Over two months. This is a boring blog. I don't know how to use any cool graphics, or even how to add pictures or anything.
Anyway, it has been an eventful summer. I don't know what it is I have been doing, but I have kept busy. I don't have much to show for it in other words. To be fair I have been making greeting cards, writing poetry, applying for jobs (still), filling out government forms(still), and going to AA meetings.
I have GREAT NEWS!! Shortly after my hearing with the Commission Against Discrimination (at which they decided there was enough merit to my case to take it) I heard that my former supervisor resigned!!! Her last day was this week. I couldn't help but think that my case had something to do with that. I wonder if they told her to find another job. I did hear that she was overheard saying that she didn't feel supported by management. I don't care. I don't even care if I get a settlement or not. I feel that I have accomplished enough by seeing this through to the hearing. I feel so powerful. This is the most powerful thing that has every resulted from my complaining about discrimination. I feel that finally, I got heard by someone, or somebodies. She didn't deserve to stay there, working with people with disabilities, that is for sure!

In My Favor

Last Tuesday I had my hearing at the Commission Against Discrimination regarding my former supervisor. They ruled in my favor!
By that I mean that they screened my case in and will be investigating further. All of the reasons that my former workplace came up with
for why discrimination didn't occur, and why the case should be thrown out, fell flat. A couple of things that came out through the investigator and my attorney are very bad for my former employer. I feel so validated I don't even care at this point whether I get any sort of settlement from them, just being validated in this way is enough for me. Just knowing that my complaint has been heard and that they now know they cannot get away with their behavior, particularly my former supervisor. This is a first for me in my lifetime, this feeling of being validated around discrimination issues.

June 6th

I am back!! I have not had a lot of motivation to come here to post, or to be on the computer at all, because the setup I had was killing my neck and arms. My friend moved my monitor onto a lower table for me and helped set me up so I could type on my lap without the keyboard falling off. It is much more comfortable. However, I have to say my neck hurts today because I had my first steroid shot in my neck on Tuesday, and it is still sore today. I feel like I need to ice it. Anyway, I have a hearing on June 6 regarding my discrimination complaint against my former employer due to my supervisor's behavior. I got a lawyer last week to help me, thank God. I was scared to death, and still am, but less so. My former employer's response to my complaint was a 50 page legal document. It was so overwhelming.

No Mediation

I got a call from the Mass. Commission Against Discrimination telling me that my former company has not agreed to mediation. They said no to it.
Therefore, I have a hearing on 6/6/06. I immediately got very anxious about it. Then, I spoke to my sponser and a friend, which really helped. I am curious as to what will transpire. Life is never boring for me, that is for sure.

Getting a Lift.

Yesterday I went to the New England Folk Festival because my chorus had a session there. I saw an old friend there which was great! When we got to the room where our session was, I realized it was up on a platform I couldn't get up on! Luckily two good looking men helped to lift me up and down which I didn't mind at all! I've had people have to lift me up into or out of their trucks and vans. If you really want to do something, sometimes that is the only way to go. I have to get off now, this e-mailing and websurfing and typing on the keyboard is killing my neck and irritating the pinched nerve to my arm. (Bummer really!) In my semi retirement I can't stay on long, depriving me of times when I could be playing games or surfing instead of feeling bored or lonely. I go to an Ortho surgeon on Wed. for a second opinion about my bad neck. Both my physiatrists feel I need surgery, and referred me. My arm is worse now--it hurts like hell easily now.

P.S. Still sober!

I have now passed 6 months without a drink. The obsession to drink has been lifted, and I don't want it to return. I need to be grateful a day at a time.

Discrimination Heaing

Let's see, I am not sure when I last put in an appearance here. Things have been relatively calm for me, so I guess that is why. The biggest thing is that I heard on my disability discrimination case (against my former supervisor), that the former company wants to go to mediation with me. I agreed to that. The attorney who called me said they wanted to do it by the end of April. I am too nervous about it to be excited. I don't have a date yet. I can't believe it is going to happen. You mean to tell me that I filed a discrimination complaint and someone is actually recognizes it and wants to compensate me? Unbelievable. However, whatever they decide will not be enough to compensate for the pain that I felt, emotionally, and for having to leave the people and clients I worked with. It will be an interesting hearing. I hope they don't bring my former supervisor with them. I do not want to see her.

I haven't been here in a long time. Times have been a little shaky. I am doing better with finaces. I have been getting a little bit of work. Mostly I am working hard to keep busy but I have too much time still. Too much time to ruminate on what bothers me. The weather is getting better, and it actually feels like spring this week.I have been to several medical appointments this past month. Some of it unpleasant. I still don't have a final second opinion on what to do with the bone spurs in my neck. I had an appt. with a neurologist who gave me a new diagnosis: Myofascial Pain Syndrome. My thought was: "NO kidding, I think everyone my age with CP has this. Tell me something I don't know!" All of my joints and several other spots like my chest and shoulder blades hurt when he pressed on them. I would've been thrilled by this news when I was in my late twenties, as I was in tremendous pain everywhere and I didn't have a name for it. Some of my providers thought it was psychosomoatic pain. It got better when I got my scooter. (Using my body less to walk, what a concept!!) Anyway, in my late twenties I was working and going to school--too much. If my body didn't feel any pain I wouldn't be myself, and I wouldn't know what to do with that! It's when it gets screaming in my face that I can't stand it. I'm doing OK mentally though. The weather is nice and I am sober!! .

Where I have gone

I haven't been here in 3 weeks. I haven't had anything to say really. I haven't worked much. I just applied for another job today. I had to go to the local school district's office and it was totally inaccessible! I couldn't believe it! There have to be parents out there who are disabled, who are needing to get into that building. No railing on the stone steps outside, a really old freight elevator that requires major strenghth to open and shut the doors, and if not the elevator, then it requires going up 20 steep steps.
I have been feeling down lately, which is why I haven't written , I guess. I am having an identity crisis now being without steady work, and no kids or partner. A friend told me recently that another woman we know who has CP is wanting to go to the local assisted living place, and she is only 58. I just turned 45, and it stopped me short, making me wonder how long I have to stay active and busy. I don't want to think about it too much! I am trying very hard to stay busy.

Time Flies When you are Having Fun

I haven't been here in almost two weeks. These past couple of weeks have been somewhat eventful, I guess. I went to the Neurosurgeon for my bone spurs this week and god, I was so anxious I woke up at 2:00 a.m. the day of the appt. The Neurosurgeon said that the risks of the surgery outweigh the benefits, and I would need more than one surgery to fix my neck. So, he would not recommend it. When I asked about it getting worse with age he said it could take 20 years. I don't believe it will take that long. He said that the spurs in the front of my neck are too small for me to feel and something else was causing my swallowing problems. I didn't believe that either. The appt. felt like it went too fast, like he really didn't have time for me. I felt kind of blown off. I came home angry. He did say he wants me to have an EMG for the nerve function in my arm, and a steroid injection in my neck. I have the EMG in a month, and then I go back to see him in May. I have my appt. with my Physiatrist this week, so I want to see what he thinks. I came home feeling depressed. I had my birthday and turned 45. I feel old. I was not happy.I am worried about losing my independence, developing more neck problems, and generally becoming incapacitated. I stayed sober though. I felt like drinking, but I didn't. Today is day 125 in this round of non-drinking life. I went to a meeting today. It is snowing but not as much as they said for us. Blah, blah, blah.

So I am a Hypocrit!!

So I am a hypocrite. I babsat my neice the other day and my sister-in-law gave me a stack of books to look at if I wanted to borrow any of them, and there was "A Million Little Pieces" and I took it home. We'll see if and when I will read it. Seeing it there, I couldn't resist.

James Frey--I change my mind

I have to take back what I said about James Frey: I saw him on Oprah yesterday and he is a liar, and I do care about that--just as she does. I kept thinking though--of course he lies, he is a drug addict and alcoholic, that is what we do! (When we are in the throes of our addiction). On the other hand, the book should not be advertised as a memoir, and also the editors should have checked the facts ahead of time. I have heard that he isn't part of a 12-step group, and that explains some things to me--he is not "right-sized" and he is not honest with himself. He needs to make amends to everyone who has read his book. I was going to read it and now I am not. He has a new book out, and how do I know if that is a true story? Having said all that I want to say I have not lied here in my blog. I do not lie, period. I am too afraid for one thing--I have never been a good liar. You can spot me a mile away if I even tried. However, I was dishonest in my drinking days in that I hid myself at home nightly and drank. I didn't let people see who I was, and I pretended to be someone else on the outside. My dishonesty had to do with omitting informaiton about myself, denial.

Bone Spurs

I found out recently that I have numerous bone spurs in my neck. One is pressing on the nerve to my left arm, and others are pressing on my esophagus. I had one PT session that made me dizzy and nauseaus and I lost my voice. I saw a second doctor who said there is no doubt that I need surgery--more than one because I have so many bone spurs, front, back, and sides of my vertebrae. He told me to stop going to PT as it could make me worse, and do damage. I am seeing a surgeon on 2/9. I am anxious but trying not to get too freaked out by it, just taking a day at a time, not projecting what is going to happen to me. I don't like the idea of being isolated after surgery. The idea of not being able to do things for myself. God, I hope it isn't too long a process.

James Frey

To tell you the truth I don't care if some of James Frey's book "A Million Little Pieces" was fictionalized. Although, he should have told us. But, the thing is, the stories he has described probably happened to some alcoholic/addict somewhere along the way. I haven't even read the book, but someday I will. What I heard on NPR is that he used a story where he discussed being drunk and high and plowed into a policeman. He describes being beaten on the way to the station, and it never happened to him. Well, I'm sure there is someone out there who had that experience, after listening to people at meetings. For now I will withold further judgement until I read the book.

The New Walking????

I read an article in Newsweek last night titled "The New Walking" about people who are not disabled buying motorized scooters so they don't have to walk so much. These are AB's buying scooters for enjoyment! I resent that. I would love to be able to walk anywhere I want, for as long as I want, but I started to lose the ability to spend long amounts of time walking when I was in my 30's! I got my first scooter at age 32. They have greatly improved my life and I wouldn't know what to do without them, but I would give them up in a second to be able to walk on my own. AB's don't appreciate what they have. It mentions the aging population and the rise of obesity in this country. Some people are getting them because they are too heavy to walk. People need to get off theire butts!
Having my scooter has benefitted me socially too as people in public no longer avert their eyes at my approach--they make jokes, tease me about my driving or ask where I got it because their elderly disabled relative could use one. It is a conversation piece. But when people at work would remark on how they wanted one I would say: "Yeah they are fun, but the qualifications to get one suck!" I think I am going to write a letter to Newsweek on my opinions about this. This is my rant for today!!!

Happy New Year

HI Blogland and Happy New Year:
I had a good day today. I was out with a friend for good conversation and fun. We saw the Chronicles of Narnia and I loved it. The cinematography was wonderful! It was like looking through a window at live action, not watching a film. And the story was magical and wonderful too. Now I have to read the books, I haven't read any of them!
Cripland as usual has been very interesting, never a dull moment. I have to go for an MRI of my neck, more PT and to see another physiatrist, since the one I saw last week specializes in Sports Medicine and does not know alot about neurological disorders like CP. I regretted going to see that first physiatrist as it set off all these other appointments.
I have a funny dyslexic story (don't get me wrong, I was never diagnosed with it, but with age and fatigue I often read what is not there). Last week I read a story about a poor elderly man, tied up and beaten. I read that he was beaten with a phone card, which made no sense, and so I went back to see he was beaten with a phone CORD. I have shared with several people this incident, to many laughs. (But it is very sad for the man involved don't get me wrong on that).
Here's to a better 2006 for us all.