Empowering Caregivers-Spotlight-Jacque AKA Onwhls

I am beginning this with the day our lives began to fall apart but our hearts became closer.

In July 1995 I fell, breaking my foot and ankle. In the following months, my doctor (a rotten HMO physician) tried to convince me that the lingering pain was in my head - not a result from the broken bones. After about a year I consulted another physician - this one a fresh, just-out-of-medical-school doctor. I related my symptoms (bluing of the skin, rashes, the feeling that my leg was being scraped with a fork with only a slight touch, and a burning similar to the feeling of ice being held on the skin too long) to him, and he ordered a 3-phase bone scan for me. The results concluded that I had Reflex Sympathetic Dystrophy (Reflex Sympathetic Dystrophy Syndrome Association of America English Version is the site that will give you further information). This condition has turned my life upside down, and in addition to the physical problems I also experience insomnia and depression (I take medication for both). I am on 1,000 mgs. of morphine a day, using a pump, liquid and pill forms. I have had my R.S.D. doctor now for 5 months, although it took me 6 years to find one. It is too late for any doctor to help me, but with the medication my life is now tolerable at times.

Because walking is now dangerous for me (the bones break too easily), I am wheelchair bound, and my biggest dream is to own a van with a lift so I can have a little bit of independence.

My husband Greg was to have back surgery in November of 1996. He had worked for Packard Bell for 17 years, but the day of the surgery both his paycheck and his benefits were cut off, leaving us with no insurance and no income! Therefore, I went without treatment, resulting in full body R.S.D. and now it is in my organs. In January 1997 I was granted SSD, because I not only have R.S.D. but also Osteo Arthritis, Rheumatoid Arthritis and a few other medical problems. In this past year I broke 4 bones in 2 days, and now have a metal wrist because of the compound fracture.

My SSD was $385.00 a month, our house payment was $595.00 a month, and we lasted for 4 months after Greg's pay and benefits were cut off. We were homeless. We put what we could in storage, gave the rest away, and along with our cat, bird and camping things we left in our van for what we thought would be the adventure of a lifetime. The first night was a sigh of relief because it was all behind us and we only had one way to go - up. We had barely enough to stay in the parks, and had to move every 14 days. I felt so sorry for Greg has he had to do so much for me, for at that time I didn't have an electric wheelchair. We had never experienced a situation like this and didn't know about the many resources that were available to us such as the churches, soup lines and food banks. Here we were - middle class people who had good credit, a new car, a van, a motorcycle - and hungry. It can happen to anyone - and it's only a paycheck away. We lived in the parks, parking lots, - anywhere we could park, for 5 months. In October, 1997, we were finally placed in government housing.

In this same month we found out about workers compensation. Greg applied for it just 3 days short of the expiration date, and had we known about it earlier we wouldn't have lost all that we did. Greg had another back surgery in November, 1997 (one year from the first one) and this time they "caged" his back. It didn't work and he was given SSD, so now he had SSD and WC. They cover his back and medicare pays part of his doctor visits but nothing covers his prescriptions. He also had a few problems other than his back before he was granted WC and SSD, so he cashed in his pension of 17 years, losing $150,000.00 for early cash-out. He said he had to do it, not wanting to ever see me hungry or cold or "without" again.

Throughout our homeless period I thought I loved Greg with all of my heart, but every day I fell in love with him over and over again. We had such a hard time, but we were and still are so close. We spend every day, 24/7, together and he is my best friend. I am lucky that our relationship was strong enough to go through what we did and remain together. I have to stop here and add that we did have to get a divorce, as my medications are $8,000 per month. We have not remarried and by law never will, but in our hearts we have always been and will always be husband and wife. Greg thinks he needs to be the caregiver, but we care for each other the best we can. Some days we've just laid in bed together because neither of us could get up. We've ordered in if we could eat. We now sleep in different rooms as we can no longer sleep in the same bed, but we have an intercom that the head of our beds so we can hear each other breathe. Also, I have sleep apnea and have a problem breathing at times, and Greg can hear me if I need his breath!! We don't enjoy the life we live but I am glad it is Greg that is here in my life because he is my heartbeat, my breath, my everything. I thank him for his strength and I thank God for our strong love in each other, for if it were not there we would never have made it back to the place where we are now. We have a home again, all cars paid for, all bills paid, food in the cupboard and great love in our hearts. We do live a very painful life but being together and caring for each other is something I am grateful for. I am not alone - we are as one. Being ill with anything chronic and painful takes life away but it does have its advantages also. You realize how precious love and friendship are. You don't take as much for granted, and you cherish every second that you have pain free. I do miss not being well for Greg so I can help him more, and for what I cannot do with my grandchildren, but as life is what it is and I have no power of what happens, I am grateful for what I have and thank God it is Greg I spend my life with.