Janice7846

I don't know what to do

2009-05-19T02:58:00Z

I have debated for weeks if I should mention this or not but I have to let some things out and this seems like the only safe place I can find to write so here goes... I wonder if anyone lives with this kind of problem. Since my husband left me I have lived at home and I can not safely live here anymore. My Mom is my caregiver and I hate to say it but she ain't right. I personally think she is mentally ill. All my life she has kept strict control on me and I mean strict. She is verbally and emotionally abusive. I suspect she has some munchusen by proxy because she loves the attention she gets. Everyone thinks she is wonderful and she loves me so much. People have even called her a saint. She has two personalities, her outside one and inside one. I know for a fact she thinks she is better than me because I am disabled and she is not. Everything I say and I mean everything she will comment on usually to contridict me. We have had the stupidest, screaming arguements because I dare to insist I am right. One perfect example, we had a fight about Africa I said it was a continent and she insisted it was a country. It did not matter when I reminded her I had been in Africa twice. I was there and still she insisted she was right. A few weeks later my husband happened to say how Americans think Africa is a country but it's a continent. The fact my husband was born and raised there may be the reason she didn't argue. I know she doesn't respect me at all because I am disabled. She does not want me to get medical help and she has even lied to my doctors and PT's just so they will give up on me. The last time I was at my new cardiologist she told him, I "have led a good life". Yes past tense. she told him I have even been to Morocco. She didn't mention she made me miss my first flight and fought me for weeks about going there. I had to pay over 2k because she made me miss the flight. When I was planning my trip in frustration I asked her don't I deserve even the least little bit of happiness? She immediately snapped "NO". She really believes that too. "I have led a good life" I realized then shes ready for me to die why because she's getting to where she can't take care of me and shes sure no one else can or even wants to take care of me. She also believe we have to be exactly alike so she mirrors me and when I do something to be different from her she hates it. The only reason why she does not spank me anymore is because she knows I will report her again. At home shes a screaming control freak and unfortunately I am the only one that defends myself, My Dad just grits his teeth and bares it or cowers in silence but the family thinks I am terrible because I shout. She doesn't want my family to love me there is so much more to say she really is nuts and dangerous. I know for a fact she has made a 93 year old lady with dementia cry several times because my mom has to be right about everything. Example its saturday but the lady says its monday but mom keeps insisting its saturday until the poor lady is crying. Mom does that to me almost daily. I am honestly afraid of her but she will not let me go. She will not let me live with any happiness or dignity. I'm crying now. Several times I have had to ask her to hide my medicine so I won't try to kill myself. I have also started making myself vomit again. I was bulimic back in high school and I don't want to start that again. Of course, she is strongly opposed to me getting any counseling shes afraid I will tell the truth about her. I don't know what to do but know one should have to live like this, this isn't living but hey I have led a full life.

A new stage in my life

2009-05-01T05:11:00Z

Well, Things have changed for the better. Just when I thought I could not make it. I qualified for some state program which means I have some "help". Three days a week a lady comes to help me shower. At first I thought I'd hate it but I love it. No more fighting with my Mom and we both have a break from each other. Ty is really nice and does a good job. I am actually getting a little hope that maybe I can eventually move out. It's been a long time since I saw my old friend, "hope". But all I can say is welcome back my friend. Now all I need is a car so I can get out and start living life again and try to make some friends.

Remembering my first hero

2008-10-16T01:53:00Z

My grandfather was a wonderful man and I always loved it when he came for a visit. To me, he was a big, strong man and I really admired him. He was also like me, he had a disability. He was the first disabled person I ever knew and he just fascinated me. My grandfather or my "Paw Paw" as I called him was my mothers father and sometime in his past, (I am not sure when) he lost his arm, just above the elbow, in a logging accident. When my mother was four years old her mother died in childbirth. So my paw paw raised the 11 children himself. He also drove a car although how he drove without his right arm I do not know. This was before adaptive equipment, before modifications and other devices that we take for granted today. He also continued working, he had a lot of kids to support AND he would come home and help with any chores. He could even make homemade biscuits with only one hand. That fact always awed me. I only wish I could have seen him make biscuits. He really was a hero to me. I think we could learn a lot from his generation. They really opened doors for us. They made their way into society and fought to be treated like everyone else. I do not think we should forget those who came before us. Someone had to push to have guide dogs accepted inside buildings. Someone had to demand the right to go to school and be in the "mainstream" classes or have their disabled child attend public school. These unknown people are my heros too and I say thank you because of you I attended a public school and college. Because of you we have the ADA, accessible buildings, handicapped parking etc. We have come a long way but we still have a long way to go. We should continue to push for acceptance, for equality and for the right to be a part of "mainstream" society. We need to do this for ourselves and for future generations.

Lifes little surprises

2008-10-12T22:07:00Z

Life can really play tricks with you. I know it does for me. I know I wrote I was giving up and accepting the way things are but then I began walking. It is still not easy but I take more steps everyday. My next plan is to walk across the biggest room in the house the living room. Thats the best room because it has a thick carpet to land on just in case. Oh I know I may never be able to walk long distances but at this point I will be happy with what I get. I am already thinking, Hey you know what? I might just get my life back. I also have a job, which is amazing to me considering all thats happened to me.

Janice

Wheelchairs, walkers and doctors oh my...

2008-10-01T06:42:00Z

I have come to realize that having a good doctor makes all the difference in the world. I change doctors or "primary care physicians" so much I am running out of options locally I may need to move to try new doctors. Bad doctors can kill you. Ever since I have been in a chair I notice doctors treat me differently like oh theres nothing I can do to help her so why bother. How can a simple case of bronchitis be diagnosed as "acid reflux" or allergies? When I was finally diagnosed and admitted into the hospital, that was just Gods timing. The doc was getting ready to send me home because the CT was fine even though I looked bad, I looked ill, I sat there coughing hard and wheezing but since my head CT was fine there was nothing he could do for me? I honestly believe it is because of the chair.

Really learning this shocked me. Come on, doctors should know better. When I was in college and walking, I had walking pnumonia but I didn't know it. I coughed so much that my co workers convinced me to see my doctor. I went and the doctor diagnosed me and got really alarmed. I ended up getting a huge shot of penicillin (OUCH) right then and there. He insisted I needed the shot immediately because it was getting so bad so I had the shot and went home and got better. I know deep down if i had been walking my bronchitis would have been treated in the beginning.

Anyway, I have another new PCP and shes a keeper. She is doing everything she said she would do. Really I am shocked. (Note: I did not use my chair I used the walker I bet that made a difference.) She is arranging for me to see a orthopedist like I asked and arranged my blood work. I had been trying to get this blood work done for a year now. Now I can relax a little and I don't have to make all the phone calls and do everything myself.

I knew being in a chair was hard and frustrating but I had no idea really what it was like. It is hard but at least we have these chairs instead of being kept in the house, isolated and stuck. Really if you think about it, we ("persons with disabilities") have come a long way but we still have a long way to go too.

I won't let them win.

2008-09-28T05:16:00Z

An amazing thing has been happening to me. I realized I am getting stronger. My legs are getting stronger. I know I know I had said I gave up and accept my limitations but the improvement is so large that I can not turn away from this possibility. I am going to pursue more intense PT even if I have to do it on my own and who knows. I am also changing in other ways. Two years ago, I nearly died from a bad case of bronchitis and severe sleep apnea. We all knew when I was discharged from hospital that I was being sent home to die. Let me tell you those movies about people that are mistakenly told they are dying well it is NOT like the movies. I did what the doctors said, took my medicine and took it one day at a time and I recently realized I am still living as if I was still sick or going to die. Well I said no more. I am losing weight and decided I look too blah so I went in got a haircut in a new style. Next I am working on my wardrobe. I am alive and it is time I start living and that is what I am doing. I decided I am not going to let them win. "Them" all the doctors who shook their heads and gave up on me even before giving me a chance.

Well, the surgeries are over, the nightmare has ended and it is time I wake up and rejoin the world. I can take a few steps on my own and I can stand longer than 60 seconds. We had a guest this weekend and I really pushed myself to keep up and much to my surprise I did keep up. I had to use the wheelchair when we went to the airport and I was not used to it. Lately I have been using my walker whenever possible and I have gone a month without even touching the chair.

How did I do this? When I came home after my second fixator I could not even move my leg, my muscles were too weak. I certainly could not do my PT exercises at home alone so one night I was thinking how can I get my leg stronger. A baby, Babies are always moving their legs and arms, constantly moving mucsles to get strong enough to stand and then walk. So I began clinching my leg muscles then I would turn my leg right and left. Before long I was able to lift my leg and move it. I egan to have a strange de'ja'vu(sp) since I was 4 when I learned to walk I could remember more and I realized I was doing the same things I did was I was a child. When I was little I used to walk pushing a baby stroller. We didn't realize it then but it was a walker for me. My parents used to hold my hand a lot to help me walk and now I do that again, I hold their arm. My next idea is to imitate holding the furniture. I used to hold on to furniture to walk and I think I found the perfect replacement I found a ramp with a sturdy handrail, a ramp would also give me more exercise as I go up and down the "hill". I am kind of learning to walk the way I did as a child and it is a weird feeling to be reliving that time in my life. This has to work and I can see the "prize" at the end of the long, long road. I am going for it and I will not let them win.

Sorry I didn't mean to show off or just dwell on myself, its just for so long I have been basically alone. I hope some of you can understand.

The topic on everyones mind... politics

2008-09-09T20:18:00Z

I have tried to avoid writing this but I can't seem to avoid it. Politics is one of the two topics one should avoid in some discussions but I have seen others write on this topic so I figure why not.

I just do not get it. What is all the fuss over McCain and Palin or should I say Palin and McCain? McCain himself has not changed, he's still 72 yrs old, he still wants to continue the wars and he is still a bush wanna be but now he's up in the polls and his fund raising is up all because he picked a woman to be his VP. I have read, "is she one of us?" and in my opinion no she is not. Sure she didn't abort her down syndrome baby and I respect that but she has a special needs child that needs more than a VP mom that has no time to spend with him because she is busy trying to learn how to be a VP. In my opinin you "have to BE one of us" not just be related to one of us. It reminds me of people who are clearly uncomfortable around me that assure me they have a cousin, a neighbor or a childhood school friend that had "special needs". I think so you still do not know what it is like...

Why hasn't anyone mentioned McCains attitudes regarding "us"? When he was in Vietnam his first wife was at home raising the kids and keeping the home for him. She supported him all that time and did what she could to make sure her husband was not forgotten over there. However, while he was away, she was in a terrible car accident. She has had about 23 surgeries just to keep walking. When McCain came home he had a limp and he was shocked to see his wife had a limp, was 4 inches shorter and had gained some extra weight. What did he do? He left her, divorced her and married Cindy who is thin, tall and has two good legs. That in itself told me a lot about what kind of man he is and what kind of president he would be.

Also, he did not consider what kind of person would be the best choice for VP for this country. He only thinks of himself. He wants to be president so bad he chose an inexperienced soccer mom to be his VP because he thinks that will give him the Hillary supporters and the religious voters. Clearly he thought of himself in this case. Choosing a female for his VP? Clearly he is using her because she is a woman, not because she is the best qualified. I think that is completely sexist. Did he look for someone with experience in foreign affairs? No, Alaska is not a foreign country so that wouldn't count either. Did he look for someone with governmental experience meaning experience with congress and the legislature etc? Did he look for someone that would be a good president should something happen to him? No, he looked for a woman. Tell me, if Palin was a man whose wife had a down syndrome baby and they kept it? Would he see the same interest and support from the press and voters? My answer is no, McCain would not have even considered "him". McCain puts his own wants and needs before anyone or anything else.

Hold it right here. I am NOT saying a woman can not be VP or President. I am saying choose someone based on their knowledge, experience, values and their record not because of their gender, race or religion. The fact is Palin does not have the experience or knowledge to be VP of a entire country. You know I have been president of a club in college for over a year so maybe I should try to run for Govenor of Florida? Hmmm... Govenor???? Nahhhhhhh.

I was talking to a friend that was for Hillary, "Why?" I asked. "Because if she needs help she has her husband there to help her". Oooookay. I just sighed and shook my head. This is the presidency of the United States, she doesn't need help with cleaning out the garage or washing dishes. Our country is in trouble folks and if we don't do something now we may regret it. So this is my viewpoint on the entire matter. I do hope I am wrong about him but I can only go by what I have seen so far. Okay I have that out of my system. End of my politcal tirade.

I lied to her

2008-08-23T00:46:00Z

This has been on my mind lately. An incident involving a sweet, little girl. I was in MD seeing another specialist when I met a little girl I have forgotten her name but I think it was Wendy. She was a dwarf and cute as a button. Her father asked me if I would talk to her and I said I would so we had a private chat. She told me she was the only little person in her family. She then asked me if people (kids) had made fun of me when I went to school. So I asked her were the kids making fun of her. "Yes" she said quietly. "It doesn't feel good does it?" I replied. "No, it doesn't" she said. "Does it get any better?" she asked me with a hopeful look. There was a huge lump in my throat as I looked at her sweet little face and tried to find the right words. "It.... will get better" I told her. "Just be the nice, sweet girl you are and soon you will have some good friends and the kids will be older and will know its wrong to make fun of people." In my mind I knew it wasn't 100% true, oh it will get better but it will never totally stop. I didn't think I was lying to her as I tried to say the right words. Shes grown up now and I hope shes happy and she's surrounded by good people but I realized last night that I had lied to her. I have since learned that no matter your age there will always be someone waiting for the opportunity to hurt you. I learned that lesson the hard way. I came to disaboom looking for a place where I could fit in after I was called names, made fun of and attacked by members of a mailing list I was on. I must say it is the first time a wife and mother and a grandmother has called me names and made fun of me. That was last Nov. and it still hurts. It has really changed me. I no longer trust people and I find it nearly impossible to reach out and make friends. I know I should just forget about it and let it go but I am finding it hard to do. I really have bad luck when choosing friends anyway. I had one friend steal from me and another friend sued me due to a car accident I had with her in the car. Can I pick them or what? LOL No, I am not trying for a pity party and its probably a bad idea to use this blog as sort of a journel. Yes it is a bad idea. Honestly, I just wanted to share that incident with that little girl.

If everyone was disabled.....

2008-08-21T19:00:00Z

I heard about a poll that asked would you rather be disabled or dead and a majority of people said they would rather be dead. Wow, that honestly shocked me. I have thought about this a lot and first of all NO ONE is perfect. I feel like everyone has some sort of physical, mental or emotional imperfection. Do you wear glasses? I don't so to me that makes you disabled. Got a "bad back" I don't so again to me you are disabled. It's just some disabilities are more limiting than others. I have never met a 100% non disabled or "normal" person. I don't think any of those people exists. Anyway, what is "normal"? Sure you can get up and take a shower all by yourself but thats not "normal" for me or thousands like me. I happen to need help getting up and getting a shower so thats "normal" for me.

I also tend to think what a great loss to the world if disabled people all killed themselves. Beethoven was deaf. If he had killed himself the world would have lost some wonderful music. One of our presidents wore leg braces and used a wheelchair. The inventor, Alexander Graham Bell was disabled and teachers were disabled. I am sure there are many more examples. Without some disabled people in the world, we all would have lost some very special things, music, art, books, the telephone etc....

I have also decided it would probably be a much better world if everyone had a limiting disability.

1. Less crime - It is hard to break into a house and rob it if your blind or in a chair. How many disabled gangs do we have? Yes I know disabled people (we) do break the law but I think that would also be greatly reduced but the crime rate would drop.

2. Less war - Yes, it is hard to fight a battled if you have a limiting disability. I suspect generations of disabled humanity would have finally learned to talk and negociate any problems.

3. Since we all would need assistance we all would learn to work together to help each other. What a wonderful thought, we would be more sensitive, perhaps more compassionate and more caring to the needs of others. We would be closer to each other because people would need each other just to get through the day.

I guess non disabled people need to get over the fear disabilities or of disabled people and learn that we are not that different from each other. We laugh, we cry, we love, we hate. We can sing, dance, act, paint, write...etc. Non disabled - disabled, it makes no difference to me because we are not that different from each other. I guess the point is, if you do become "disabled" then let me assure you, life can and does go on.

Janice

International travel overseas in a wheelchair.

2008-08-14T02:10:00Z

     It was 2003 and I had just returned back home after 17 months in MD with a fixator on my leg trying to lengthen it. I was anxious to return home and have some PT so I could actually bend my knee a little bit without screaming in pain and then go on my long awaited trip. I had met a guy in a chat room 2 years earlier and even though he was so far away he had given me the support I needed by phone and by the internet to make it through an awful time in my life. After much thought and discussion I had agreed to go to meet him and visit his country, Morocco. Everyone thought I was nuts. You're going to a primitive, third world country ALONE in a WHEELCHAIR????? To say "it was an adventure" was an understatement to say the least. Much to my surprise the only place that treated me badly was in an airport in USA. Since I had never left USA I had no idea what to expect. How would they react to me, a disabled person??? However, I was treated much better than I ever could have imagined. I was barely searched as I was wheeled around metal detectors and had my passport stamped while everyone else waited in the long, long lines. The adventure was about to begin. I was finally going on the trip I had dreamed about for so long.
     I had to change planes in Marrakesh and fly to Casablanca, the plane had emptied and I waited and waited. Finally, two guys came in with that awful isle chair and they got me to the door of the plane when I saw the STAIRS!!! Oh great how was I going to get down there? They helped me stand then put their arms together and I sat on their arms and they carefully carried me down to my wheelchair. A man was standing beside my chair at the bottom of the stairs when I realized I was wearing a skirt which means from that angle, he was probably getting an unexpected view. Then he smiled this big wide smile and I knew he had gotten an unexpected view. I groaned "I don't believe this..." The guy carrying me replied. "It's no problem". I think that's all the English he knew. Anyway, all I could think was "Did I just flash someone at the Marrakesh airport?" I was carefully placed into my chair and wheeled inside the surprisingly modern airport. I had a five hour wait for my next and last plane so I sat there. Once in awhile someone would come over and chat with me like a very nice lady named Zena. (who can forget someone named Zena?) I had not slept in over 24 hours, it is a 2 day flight from Florida to Morocco. I was exhausted and uncomfortable. Some guy sitting nearby kept looking at me but it was okay because I was staring at everyone. Finally, he got up and came over and turned my wheelchair to face the empty seat. Then, very gently he lifted my leg and set it on the empty seat. It felt so comfortable and it was one of the nicest things someone had ever done for me. I was able to snooze a little until a guy came to take me to my plane. Again I was carried up into the plane and carefully set in my seat. Okay I get to Casablanca and again came the aisle chair (I hate that chair) and there were NO stairs!! (Yippee) My wheelchair was waiting for me and we did the "get out of the aisle chair and get into the wheelchair" dance while not putting any weight on my bad leg. Again I was wheeled through the airport and I am terrified my friend/fiancee would think I wasn't coming because it was taking soooo long just to get off the plane and through the airport. What if he left? I tried to tell the guy to take me outside to meet my friend but we had a language problem. By now I was beginning to regret not taking French lessons in high school so after getting my luggage and moving as slow as humanly possible we finally went outside. There was a crowd of Moroccans milling about and one rushed over to me and placed the biggest bouquet of flowers I had ever seen into my arms and lap. After a quick, small hug he dashed behind me to push my wheelchair and then the crowd went nuts. For one terrifying second I thought did he bring all his relatives/friends with him? It looked like they had all been waiting for me. Oh, was that the guy I came to meet, I barely got a look at him. He moved so fast he was like a blur. Luckily he had said my name so I was almost positive it was him. This wasn't how I pictured meeting him. I was supposed to come out and our eyes would meet. Then he would come closer to me and with a smile he would welcome me quietly as he handed me some flowers as violin music played in the background. It was nothing like my dramatic and romantic fantasy. Everyone started talking loudly and gesturing wildly and followed us as I was whisked away to a waiting taxi. I use the word "taxi" loosely. My thought was that's not a car, that's a sardine can with tires. Does Morocco mean "Land of small cars" in English? I was helped into the "taxi" and waited while they struggled to arranged my luggage and wheelchair into the tiny little car. There was lots of shouting and talking back there. To this day I do not know how they got everything into that little car.
     Finally, the driver got in and my fiancee squeezed into the backseat which was also full of my stuff. Then we were off to the hotel where I desperately wanted to lay down and rest. I had been sitting for 2 days. I clung to my car seat as the driver sped wildly through the crowded streets of the city. I was sure no one knew how to drive because they all drove like maniacs. I watched in shock as little motor scooters carrying sometimes 2 or 3 people with no helmets flew down the road and weaved back and forth between cars. It was about this time that I began to realize I had lost total control over my life. Like I was on some sort of a rollercoaster ride. That is how I arrived to Morocco. At least that's the most memorable events of my arrival. Next time I will write about the highlights of my trip. The crazy times and the special moments of my trip. Lets just say it was my first real adventure and I loved every minute of it.

What would you do?

2008-07-31T07:50:00Z

I hope it is okay to ask this. I really need some advice. A few months ago, I joined the center for independent living to get access to some services. My counselor began calling me "to see how I was doing" and kept insisting I call him just to say hey whats up. One call went way too far, he began discussing his personal life, hes divorced, etc and he told me he calls all his clients but he called me last so he could talk to me longer. He said he loves hearing my voice because its so sexy and even asked me several times to say the word "okay" because he loves the way it sounds. I couldn't believe it. I was very uncomfortable and ended the call. The next few weeks I avoided answering my phone. About 2 weeks later, he called again but early in the morning and woke me and my husband up. At this point, I was considering changing my phone number... I didn't want to report him and make him mad at me or would they even believe me? A few weeks later, we were preparing to move out of the apartment when he called. Suddenly I found a way out, I lied and told him my husband and I were moving to another city so he could close my case. The truth is... I didn't leave the city with my husband. I am staying with my family for now. I plan to join my husband after hes settled with a place for us and working a good job. Now thanks to this counselor I can not use the services at CIL, they were going to help me get a electric scooter or loan me one. I still do not know what to do. Did I misread the situation? Should I report him to his boss which would make him mad at me or just let it go and hope he never finds out I am still in town. I am not used to dealing with this. Well thats it...

Janice

Airbag danger

2008-07-21T21:07:00Z

Okay theres a subject. My parents cars have airbags and I can't get in the back seat, can't bend my knee enough. When I was driving I had my airbag disabled. Due to my height and my neck problems a airbag would probably kill me. I have tried to explain, reason, plead, and beg my Mom to have the passenger-side airbag disabled but she refuses because "it's against the law" well so is killing your daughter. I have become virtually housebound because I am too afraid to go in her car anymore. A few weeks ago she almost had a accident and after everything was fine, the stress of watching the car almost re-end the car in front and knowing that airbag almost opened well I sunk down in my seat and burst into tears. Why does she have to make everything so hard. Life is hard enough for me as it is but she makes it worse. Everyone thinks I am too agressive and hard as a rock but I have had to fight for everything all my life well I am tired of always fighting everything but if I simply stop and give in then I am sure I would die within 1 year.

Dramatic yes but it is absolutely true. Is life really supposed to be so hard and miserable? I don't think so but it is the hand I was dealt. Oh well I will continue the fight as long as I can....

Janice

People

2008-07-09T05:04:00Z

I have been busy getting my paperwork together for my new job and I have a few other projects/ideas in the works but my main problem is I lack the confidence I need to even get going and I have a bad habit of starting things and never finishing. It is the way I was raised and I don't like it. I have been like that most of my life. One time I found my childhood diary and I think I wrote in it 3 times. So I need to push myself to get to work and try to make a better life for myself.

I don't really know what else to write about. It's been a hard day. I hope tomorrow is better.

Janice

Life goes on

2008-07-05T21:25:00Z

I have been doing a lot of thinking and thanks to the replies here, you guys have helped me let go. You guys got it. You understood what I am going through. I do know many of you understand waking up in a hospital and being given the bad news. You know what its like when they bring in that wheelchair for the first time. Why do they have a big smile and act like they are bringing you some big prize or a present? I was never allowed to grieve for what I had loss and whats really bad is they didn't grieve or feel any loss like I did. Its like who I was before 1997 never existed and I don't think it's right to forget that. I accomplished much more than anyone ever imagined. I was the first one in my family to graduate high school and go to college and graduate with honors. I learned to drive and I had my dream job in a TV station. I am not trying to brag. I am trying to say I wish I could tell them I did not die in 1997 and who I was then and what I did then should not be forgotten.

In many ways, I feel free and I feel like a 1000 lb weight has been lifted off of me. This IS my "normal" now. Time to move on and make a new and good life. I am ready to be happy again. First, I need a creative outlet, so maybe I will try to take a course in photography at the JR college and see how that goes. But my main priority is getting to be as independent as I can now. I am going to try and get my ortho dr to admit me to the local rehab center here in town or refer me to any rehab center. I have lost a lot of strength in my good leg and I need that back and I could use to the exercise. I really have gotten so weak. I need to relearn how to lay down in bed by myself and how to get out of bed by myself. With my family I do not have much chance of doing anything by myself. Its like they can't stand to see me struggle. The truth is they do not understand me or what I want and need. My parents, my husband anyone that knows me, they don't understand what I go through. They just think I am a terrible person because I shout. I live in constant frustration and I lose my temper and yell or snap at people. I know they are trying to help me but that much help is killing me. Example, last night I was getting ready for bed with mom standing right next to me and when I began to pull my dress up over my head, shes was there her hands jerking or twitching as if to take the dress and pull it off of me. I have asked nicely "let me do it myself "and I have said nicely "I can do it myself" but after being nice about it after the 10th time or more in a row I get frustated at saying it over and over and fighting them and I get mad and yell or snap and I am the bad one because I want just that bit of independence. I am still not allowed to dress myself. I even specifically wear 1 type of dress a simple pull over dress no buttons or zippers so I can dress and undress myself. In the morning, they are too fast for me and before I can stop them its on me. It is exhausting and almost painful to always having to be forceful and always be angry and fighting. The worst part is I am hurting my family. They mean well and they love me but they refuse to change. The only thing I am allowed to do myself is the computer and feed myself oh and watch tv. So the best thing to do is to find a rehab center to live in and since my husband is away, now is the best time to do this. The hard part is getting medicaid to pay for this.

It is time for me to have some peace, be happy and feel good about myself. As for walking I already decided NO MORE SURGERIES! If I walk great, if not, then I can still have a good life.

hugs, Janice

Admitting the truth

2008-07-04T08:35:00Z

It has been on my mind a lot lately and it is I something I do not want to accept but maybe it's better if I accept the truth and try to move on from there. The truth is I will not get back my ability to walk. God knows I have tried. 2 fixators, several surgeries, months and months of PT a lot of blood, sweat, tears and pain. A few weeks ago the thought that I will not walk like I did before 1997, well, it started going through my mind and I guess it is time to accept it. It is better than getting my hopes up and then having them crash back down. For the rest of my life I will need a wheelchair or a walker. There I said it and it hurt worse kinda like pulling a band-aid off of a hairy arm but at least I am facing it. For the first time in my life I feel and see myself as disabled. The really ironic part is now that I truely need services like Voc Rehab, PT and whatever else is available, I can not get it.

In college when Voc Rehab insisted on buying me a scooter, I didn't want it and I resisted it. I didn't want anything to do with VR except for modifying my car. I felt I didn't need them but now that I really need help the doors are closed and locked. My leg was almost 7 inches shorter than my left leg before the surgeries but with lengthening it was only 1.25 inches shorter than my left leg. It was so close and for the first time in my life I almost had 2 feet on the ground. It was my dream come true. After the fixator was removed my leg began to shorten and today I finally admitted it has shortened again. So lets add another .25 inch to my already 4 or 5 inch lift. It gets shorter because I have no hip socket for my femor to be stablized it and so the femur has been sliding up and up. So it was all for nothing, everything was for n-o-t-h-i-n-g.

College was for nothing. Why did I bother to even finish high school? Why did I learn to cook or learn Spanish or learn to drive? The surgeries and all the pain and suffering that came with it and all the hard work was for NOTHING. All the X-rays,needles, pills and doctors and time away from my family, for nothing. Loved ones died while I was away lengthening. I missed saying good bye to them for NOTHING. All I can think now is geez when I mess up I really mess up big time. I can't do anything right. Even from the beginning I couldn't even grow right in the womb and so I guess it is a habit with me...

I am so angry at myself, the world... everything. I don't even know how to relate to people and to socialize "normally" anymore. I used to be "Miss Popular" and now I have 0 friends. I guess the worst part is I finally see myself the way the world sees me. It's time to accept reality, I am not going to walk like I used to, that life is over now. I will not have the life I dreamed of. I will not be a good wife to my husband and be able to take care of him and our home. I will never know the joy of holding my own baby in my arms. Maybe its best I can't have kids. I can't run and play with them. Their friends will stare at me and make my kid feel uncomfortable. What if my kid became ashamed of me?

I tricked a good man into marrying me. I promised him I would be walking "soon" and I promised him children. I didn't mean to trick him. I was told by the doctor in 2003 that in a year I would be walking, he looked me right in the eyes and lied to me and another doctor assured me I could have a baby. Unfortunately, I believed them. The hardest thing though is knowing I did this to myself. I wanted out of that leg brace so bad, I wanted to "fix" my leg so bad, I wanted to be more "normal" that I wouldn't accept that it may go wrong. I wouldn't hear or even think about it. I haaaad to do it. I didn't know just how "normal" independent I was or what a good life I had but now I know what I have lost and all I seem to think now is OMG what have I done??? There are no do-overs in real life. Its a hard lesson to learn. But it gets worse because I truly believe, no, I KNOW that with the right doctor and with really agressive PT or a different leg brace I could maybe walk. I mean I can take about 10 steps with even my cane. I have come so close to walking again but its like trying to catch smoke in your hand.

Yes, I know its a pity party. I rarely have them but I have to get it out because it's eating me up inside. There is no happy ending for this story, sadly this is not a movie.. Okay enough. I do feel a little better. I raged, I ranted and now I am going to go to .

Janice, the drama queen