Since I first began to write about my illness I have always tried to improve myself physically, emotionally, and mentally. There are days when my world feels like its just caving in on me. Especially after I was told that I should not pursue a Nursing Career.
By nature I am a caregiver. I don't know how else to be. I feel like I have lost everything. I lost my marriage, my children, my home, moved over 20 times and even my sanity. I always believed that I was a strong woman and I could endure anything that came my way.
But my illness reminds me that even strong woman fall. Sometimes so far that it seems that reaching the top is a never ending goal. It was like the time I flinched the first time I was struck by my first husband. I remember that awful feeling like,
Yes, I can die. Yes I can be broken. Yes, I can be beaten I remember placing my arm up to cover my face and I flinched.
That's what Tardive Dyskinesia feels like. When I get nervous and I start to shake uncontrollably and I can't speak. Sometimes the words I want to say come out wrong. Or I might even type them wrong, but the meaning is the same. I feel like Job.
And I can't help but wonder when will I ever be the same. I know that I might not ever be the old me again. That is something I struggle with daily. I wake up and my head is already shaking. I take my medication "Clonazepam". It's a small does. It's used for patients with Parkinsons.
I remember telling the Neurologist,
"Just give me something to help me pass a job interview." I miss working in the hospital and I miss taking care of people. How can I take care of anyone if I'm shaking like this. Granted with the medications I am better, but I still have my days when I am not. I get so depressed that I refuse to answer my IM's or E-Mail and sometimes the phone.
It's even harder knowing that a couple of my children refuse to except the fact that I am disabled. I understand their pain. It was hard for me to except too. I was hell on wheels. I gave my poor mother a very hard time at the Social Security office. I feel bad, because I made her cry.
To me it was like saying I was helpless, useless, beaten down and weak. That is not to say that all disabled people are weak. There are many people who have been great leaders in this country with disabilities. I'm just speaking of my own feelings.
I want to work, but yet I'm afraid that I'll fail. I'm afraid of being mistreated again. My Neurologist told me I wasn't ready to work. But I still finished my resume' and want to try. Maybe with a temp agency. I hate being alone, but I'm alone because I choose to be. If that makes any sense.
I feel like I'm always hurting inside. And I tell my mother that sometimes I wish God would come and take me. I don't mean suicide, just the rapture. I wanted justice and got some justice. But now I want my sons to understand me and to know that I may never be the same again. I'm still the old me inside. I'm still funny, I like to dance and joke around.
I'm still on Cymbalta for my depression, Meloxicam for my Osteoarthritis, and Benadryl to help me sleep. I want my life back. I had a steady job for five years, friends, and was going to college for two years. Now I spend most of my days with my mom, cat, and puppy. Sometimes I hang out with my little sister and brother. But not often. I have two good friends that see me when they can. I'm not totally alone, but I feel like I'm alone. And I feel like why me? Why did I lose so much? I was very pias growing up and devout to god and Jesus. I was a good mother and good wife. I prayed and trusted God.
Then, I think about the time I didn't place my trust in God . I feel like maybe what happened to me is just. Maybe this is a punishment. But deep down I know that whatever I may have done was never so bad that god would allow this to happen. For all I know he could be testing my faith. Like Job was tested.
So, here I am. TESTED. And TESTED... And I pray, pray, pray for better days and better way of life. I pray for my sons and my family. I don't want to be a burden to anyone. And yet, that's how I feel. I'm judged because I don't spend much time with my children.
To begin with, when I came out of the hospital I was not in my right mind. I was shaking all over and nodding. I was speaking words that didn't make sense. I had to relearn to walk, hold my head, and drive. I had to learn to get plenty of rest. It was hard on my mom too. She would often say, "
Donna, can't you stop... Just stop."
So, I walked into the bathroom. Looked into the mirror at my shaking head and said very seriously,
"Stop... (waited) Stop....((waited) Ok. Stop..." Then threw my hands up and said,
"Nope. I can't".. After awhile it was a joke around the house. My brother would mimic the way I crossed my mouth and my way of speaking. My mother too. I laughed to keep from crying about it.
Sometime when I was speaking what I thought was Navajo. Mom would say,
" Donna? Do you want to go to bed?" And I would nod quickly and blink. I was ticking and I couldn't stop. We slowly walked to my room; which was once my fathers. She would help me to bed and give me the medication that was prescribed.
Then my mother introduced me to using looms. I started making hats. I've made too many to count. We noticed that my head would stop shaking when I focused on one thing. My feet stop moving up and down. I was able to speak better. We both felt that it was part of my nervous condition. Somehow it was linked to my emotions.
The next thing we did was I bought longer looms to make blankets and baby blankets. I loved doing that. I felt in control of myself when I worked on the blankets. Slowly I got better. I saw my Psychologist once a week for a year. She helped me to see that most of the deep emotions and heartaches I had were valid. And the way I chose to deal with it was also valid. She helped me to see that my conscience and my sub-conscience divided because I could no longer deal with my reality.
I remember feeling as though I were looking into a window at myself. I knew what I was doing, but I couldn't help myself. I remember thinking I was under hypnosis. Every wink , blink or nod from my family was a command. I could hear my ex boyfriends voice just as clear as day asking me questions. Trying to help me. I was talking about all the horrible events of my life from childhood on up to current events.
I also had Psychiatrist that I spoke with briefly once every three months. I saw my medical doctor as needed for my Arthritis. I had every test you could possibly have, CT, Blood work, EKG, and Brain Scan. Nothing. They couldn't find anything except that I suffered a heart attack at some point.
I have physical therapy to help me walk. I use a point of reference to hold my head still. Like a pole in the distance or a car. I learned to lean my head back when I was driving up against the head rest. The Physical Therapist used Kinesiology or Voodoo tape to help my body remember. The tape was florescent. It was placed like a T- on my neck and shoulders. It worked.
There was a day when I was walking out of the bank. I was embarrassed because I was walking, like I was dancing a Native American Dance. My poor mother would look on helplessly. But she let me do things on my own. I was very persistent about my independence. And when I felt she was there to help put me back together.
Once, when we were at Walmart I was shaking so bad that I was having trouble walking. I couldn't walk very fast. My mother gave me and object to hold on too. I embraced it like a book. I walked around with it. But even as I held it tightly, I was still shaking,. But not as bad as before. I remember hating the people for staring at me. And smiling at children who didn't understand.
After awhile I refused to go to Walmart until I was better. I enrolled in the gym, "Freedom Fitness". I did this because I knew that if I didn't exercise my muscles; my condition could become permanent. I refused to live the rest of my life that way.
Sometimes when I exercised, I was worse then before. In the beginning I got on the treadmill and elliptical. I walked out of there shaking and bouncing uncontrollably. I exercised in the dark room often. I didn't want people to see me. Then I started to dance to the music while on the treadmill. I keep pushing myself further and further.
Then when I was able to control myself I bit more, I started exercising more in public. I remember getting a weird tingling sensation all the way down my back and threw my fingers. It felt like my nerves were remembering what their job was. I would walk outside when I was done and get into the truck, that was once my fathers. I remember that I was shaking so much at the light. It was a bit hard to drive. I would go home, shower and take a nap. On bad days I would ask my mother or brother to drive me.
When I started taking the cymbalta for my severe depression. I couldn't stay awake for about two weeks. It was so hard to stay awake. Then slowly my body adjusted. Then came the knee pain, ankle pain, neck pain from all the stiff motion. X-rays were done. And that's when they discovered I had Osteoarthritis. I would wake up stiff and in pain.
I remember on this one particular day, my eldest son drove from San Antonio to sell some kitchen knives. That was the first time he saw how bad my condition was. At first he smiled and gave me a big hug. I could see the pain in his eyes. We drove to my Aunt house so he could do his demonstration. Then my aunt who is a Psych Nurse said,
"No Donna. We will have non of that. No nodding or shaking." Then she said,
"Donna try to place your arms behind you." I just cried and said,
"I can't! I can't!" As I sobbed. My son began to get tearful for me as well as my mother. My aunt felt that I had a particular condition. I don't recall the name.
Then my Psychiatrist prescribed Ambien for sleep. This helped a great deal. My family also noticed that it helped to calm the ticking. Sometimes I could only move one inch in front of me. That's when I took the Ambien and went to sleep for awhile. Although my psychiatrist felt that it was not a good idea to take the medication for this. He changed it to Lunesta. Best sleep I ever got.
I kept reading my bible and praying for gods help and strength. Slowly I proved that I could take care of myself. I began to fix my own bed, wash dishes and take care of my nieces and nephew after school and a little friend. I made them grilled ham and cheese sandwiches. I helped my little niece Rena with her reading and alphabet. I helped my nephew with his math homework. And I made sure that Sierra and her friend ate well.
By this time I was on SSI; which alloted me $400.00 and they kept $200.00 for living with my mom. Which I still don't understand very well. The money was for food, shelter and clothing. That was from April to August. That wasn't enough to see my children. But with my mothers help I did manage to see them.
In September the Social Security stated I qualified for Disability. Which they took all the money I earned and divided it and came up with a figure. That was about $950.00 a month. I proved that I was able to care for my self and my mother was no longer my legal guardian. I promptly moved into an apartment a few blocks from my mothers and started again. My eligible sons received SSI in the amount of $214.00 to help them with food, shelter and clothing. I made sure that they received that. And I paid child support in the amount of $50.00 per month till May and then it's zero due to my disability. That in a way was a blessing that I truly needed.
My rent is $685.00 all bills paid. The cell phones for my son and myself is $89.00 per month. I started working on line with my uncle part time. So I needed the internet. And that was about $50.00 per month. And the rest was for gas and food. I would supplement my income by selling the blankets and hats I made. I worked for my Uncle from September to December in the comfort and safety of my home. Most of the money I made for my uncle went right back into supplies, phones, internet, gas for the truck and help my mom, and my sons if they needed it.
I joined a web site on Corkin. the link is
http://www.corkin.com/Profile/view.cfm?userid=48908 . There you will see my free E-book. All of my work on the hats, blankets, booties, scarfs and pot holders. So you see. I just keep fighting and striving. I'm not making money hand over fist by any means. But I work very hard for everything that I have. And that includes my health. I began blogging about my experience on myspace; where I also placed photos of myself and all the work I've done. Looks can be deceiving..As some of my friends found out. That link is
blogs.myspace.com/loveroses24
So what appeared helpless turned into a victory for me. I may have flinched, but I fought back.
Written by Donna C. Ledesma
Copy (C) 2009
All rights reserved
I was having difficulty walking. I was walking like an old woman and taking very tiny steps. My mother was very good about giving me the medication. I was on five different medications. But as time wore on, the medication was decreased to three. I was taking one for depression, one for sleep and one for the stiffness in my body. I hurt all the time. Especially my neck.
hopeful 
