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I want to make it very clear how RSD has changed my life forever. In order to make this journey understandable I have to explain how life was for me before RSD came into my life.
In the months prior to the incident the incident that caused the RSD I was a full time student and a full time employee. I worked 40 hours a week in a mental health hospital. I was taking from 13-18 credit hours in school. I was doing 15 hours a week at my internship. I also had a family with a 14 year old son. My son has ADD so he is a full time job himself.
I worked the graveyard shift at the hospital. The shift I worked was 10 hours from 9 pm to 7:30 am. When I got home from work I would immediately drove my son to school. I would sleep for about 5 hours. When I got up I would eat something then start on my school work or go to classes depending on the day. While working on my school work I would also be cleaning my house. Whenever I would stop studying to use the bathroom or get a drink or just take a break I would pick up a little or wash a load of dishes or change laundry loads or fold clothes. At 3 pm, if I wasn’t in class, I would pick my son up from school. Once home I would follow the above routine until time to cook dinner. After dinner I would take a very brief nap, some times as little as an hour. Then it was time to go back to work again. This is the schedule I followed for the year and a half prior to my injury.
On April 7, 2002 my life changed forever. I got hurt at work restraining a child who was out of control. This was the night from Hell at work. We had 19 seclusions and 2 four point restraints that night on the child and adolescent units. The chaos was breaking out when I arrived at 9 pm and continued until approximately 1 am. At 2 am I finally went to the hospital when the swelling in my wrist would not stay down after icing it.
The ER sent me home with a sling. They kept me off work until I could see the orthopedic doctor the following week. This is when things went from bad to worse.
I am not going to go through all the mess that happened but will give you a brief idea of what I have been through instead. I want this to be more about what my day to day life is like now not what happened with the doctors and so forth. In brief I started with physical therapy that did not work because the pain kept moving. This progressed to surgery on my shoulder, this too failed. More physical therapy that did not work. Next was the referral to the pain doctor where RSD was diagnosed. The pain doctor only wanted to treat me with opiates which are generally considered to be wrong practice with RSD. Then I was sent to another pain doctor who started the RF ganglion nerve blocks. They worked for awhile but no longer. Then the spread from my arm to my leg. One doctor denies it is RSD the other says it is. The testing that was done indicates it is RSD. I have fired the first doctor because of this and other things he did wrong. Anyway I now have RSD in both the arm and the leg. I have also since been told there is a problem with my eyes that may or may not be glaucoma and that the optic nerve is larger than usual (RSD maybe?).
Back to my day to day stuff. I can no longer work. Going to school has been quite an ordeal. I can’t carry my laptop to school for note taking any more. This has made it really hard for me to take notes. Note taking was the main reason for the purchase of the laptop but it is now far too heavy for me to carry in my left hand and my right hand is busy with the cane that I now have to use. I spend most of my time researching RSD (as my pain levels allow), going to doctor appointments, physical therapy appointments, psychologist appointments, and lawyer appointments. Add to that mix classes and trying to write papers. I have appointments with the Department of Vocational Rehabilitation to try to get help with the things I need to help me get along in life. I am fighting workman’s compensation to have them cover the spread to my leg. Oh and let’s not forget the meds three times a day. My kitchen looks like a pharmacy just with my meds.
Next we’ll look at the mental Hell I have been through. I have been belittled and degraded by my employer. I have had a doctor chew me out for taking my self off methadose. I have had a million people ask me a million questions about what has happened that I am walking with a cane. I have had co-workers show me their disgust with the fact that I would return to work on light duty. On top of all that I still have nightmares about the night this happened to me. Every time I get stressed out I have these full blown, full color nightmares. The night this happened was like a war zone at work and I relive it far too often for my comfort.
Doing household chores is almost impossible but I manage when the pain levels are low enough. It now takes me hours to do a days worth of dishes because I can’t stand long enough to get them all done at once, I have to take frequent breaks to let the pain subside. There are things I can no longer reach and now I have to wait for some one to be home to get things out of upper cabinets for me. I have to have my son carry the laundry hamper to the laundry room for me. I can no longer sort the clothes on the floor because bending that far is really painful. I have to pull what I need out of the hamper. This sometimes causes things to get missed and dirty clothes left in the hamper until the next laundry day. Forget vacuuming! The vibration triggers severe pain in my shoulder and arm. Making beds requires 2 people now because I can’t do all that walking around the bed or I would be done for the day. Papers that used to take me a matter of hours to type now take me at least twice as long depending on the pain levels. If it took me an hour to type a paper before it now takes me no less than 2 hours because of the frequent breaks I have to take. If there is such a thing as dyslexia of the fingers I have it because I now tend to type things funky, it’s like my mind and my hands don’t meet up anymore.
I don’t have the energy or stamina I used to have. I am tired all the time but never can sleep during the day even in my bedroom where I have all the windows blocked from when I worked graveyards. My skin burns so bad at time I don’t get out of my pajamas. There are days when I hurt too bad to shower. I have to wear the baggiest clothes possible on those days or the pain about drives me insane.
I
hope this gives you an idea of what life is now like for me. I went from this dynamo person to some one who at times can hardly get out of bed. I hate this!
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 JANINE ,,,, I know how my life is still changing,,, so much more testing I am now starting too go thru also. Learned this last week while I was in DENVER. WOW,,, this is soo hard for any of us too deal with. As with me,, being a indenpendant truck driver,,, and going all the time,,, as with home, now it takes me *****time**** too do what needs too be done,,, with the meds. making one soo fatigued, soo hard. And now also having too have help with things,,, it is really hard too adjust too. I have too have a caregiver,,, and home health care coming in too help me my needs and med needs both,,,,,, ****** I HATE THIS ALL****!!! It takes away privacy of home,, it interefes with daily lives in so many ways that we take for granted. That not many people even think about!!! Then meds,,, the side affects!!! UGGZZZZZZZZZZZ ,,, none of this is no fun for none of us!!!!!! BELIEVE me,,,, there is answers coming for us all. I know it is hard too wait,,,,,, BUT There is answers ,,,,, I know my dr is demanding answers now,,,, after what he expeirenced monday,,, during my physical. SO we will see what is going too happen!!! By the way they calledme too see if appts are being set up,,,, if not called monday now,,, I am too call back and will be called for appts. SO that was encouraging also. annie
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