Donna's Story

Growing up I can remember being a happy, healthy, and care free child. I was never sick except for the normal childhood diseases, measles, German measles, and chicken pox. For the most part I can remember having a cast iron stomach and I could eat all the green apples I wanted and not get sick.

When I was a teenager I noticed a sore forming on the tip of my finger and it is was very painful. After a couple of days the sore ulcerated and my mother took me to the doctor. He said he never seen anything like it and wasn't sure what it was from. He treated it as a spider bite, gave me medicine and sent me home. I didn't realize it at the time but this was my first encounter with raynauds.

My senior year in high school I started having severe stomach pain and was having trouble going to the bathroom. My mother took me to the doctor and he hospitalized me to run tests. They found out that I had gastritis and a spastic colon. He told me the foods to stay away from and told me to watch my diet.

After I graduated from high school my childhood sweetheart went into the Marine Corps. After he finished boot camp we got married. He was then stationed to Camp Pendleton in Oceanside, California. We had our first baby a year later. We were divorced three years later. Following my divorce I started having stomach and bowel problems and after further tests I was told that I had a peptic ulcer and my spastic colon was acting up. I was put on a diet for six months and was fine.

I remarried two years later to the man of my dreams. We tried to have a baby for a year and a half and finally I got pregnant. My third month of pregnancy I was at work and I started hemorrhaging. I went to the doctor and he told me to go home and go to bed and stay there until it stopped. He told me that I was probably going to loose the baby. I was in bed for three weeks and finally the bleeding stopped. I went to the doctor and he examined me and said the baby was fine and had a strong heartbeat. After my second daughter was born things started to change.

My fingers had been turning blue for a few years and I didn't give it much thought. They were now starting to turn white and I had another spider bite. I went to my doctor and he told me that wasn't a spider bite it was raynauds. He referred me to a neurologist who gave me a complete physical and took blood to run tests. He told me that I did have raynauds but it was a secondary disease and an auto immune disease usually accompanied it. He told me that most probably I would get Lupus down the road. He prescribed procardia to help the blood flow to my fingers. At the time I started taking the medication he told me that he had never given it to any body as young as me. I had never heard of Lupus and had no idea what he was talking about. I felt fine and looked fine, so I just shrugged it off.

I got pregnant with our third child and in my 6 1/2 month of pregnancy Joshua was born. He was a fighter but only lived for one week. I thought my heart was truly going to break. That was one of the worst pains I have ever endured. He will always have a special place in my heart and to this day I still miss him. We later found out that procardia causes premature births. I was taking that medication until I found out I was pregnant at 4 weeks.

My doctor told me that the best thing I could do would be to get pregnant again. I had three miscarriages and Mark and I decided that emotionally we couldn't go through this any more. We made the decision to get my tubes tied. I had the surgery and two weeks later my doctor called me and told me that he needed me to come in the office. He told me that the routine Pap smear that they did before my surgery showed cancer of the cervix. Six weeks later I had a vaginal hysterectomy. In the recovery room they found out that I was bleeding internally so they did emergency surgery and cut me from hip to hip. Somehow a blood vessel wasn't tied and I almost bled to death. He left both of my ovaries and a year later one of my ovaries filled with blood and burst. I was rushed to the hospital for emergency surgery and the ovary was removed.

The next few years were very painful for me. I was very depressed over the death of our son. The ulcers were getting worse and nothing the doctor gave me was working. One night the pain was so bad my husband went to the drug store and got some black salve. He told me that his grandmother had always used it on them when they were little, and maybe it would work for me. He packed my ulcer with this black tar looking salve and bandaged it up. After two days I now had a hole where the sore was and the infection was gone. I used that until even that wasn't helping. I was also having panic attacks while driving, problems with my stomach, bowels, and pain in my back. The doctor ran tests on several occasions and couldn't find anything other than the gastritis, spastic colon, and depression. I thought I was going to go crazy because I knew there was something else wrong, and didn't understand why it wasn't showing up.

One night I was painting designs on sweatshirts and I went to stand up and I couldn't. My hips felt like they were stuck and I couldn't stand for several minutes. I made a doctor appointment and he took some blood. The next day we left for Florida to spend Christmas with Mark's mother. When we got back home there were several messages on our answering machine from my doctor's office. The last message said, "Please call our office as soon as possible and make an appointment to see the doctor." I went in and he had a very serious look on his face. He told me that I had scleroderma and he wanted me to see a rhuematologist as soon as possible. I was frozen and couldn't move, couldn't hear, couldn't understand anything he was saying. I just wanted to run and I did. I cried all the way home and Mark held me and wanted to know what he said. I told him and I could see the fear in his eyes because we knew someone who had scleroderma. She was very sick; her skin was so tight on her face, arms, and hands. She was hospitalized so many times and they didn't think she would make it each time. I was just horrified that I would look like her. Mark and I went to the library and read everything we could find pertaining to scleroderma and all it did was scare us more.

Mark and I made an appointment to see the rhuematologist. After an hour of taking notes and examining me, he told my husband that all he could do was keep me as comfortable as possible, but bottom line I was going to die. I knew we had to leave because Mark had that look in his eye like he wanted to kill him and he isn't a violent person. We left and never went back. Needless to say his bedside manner stinks.

I asked my friend for the name and telephone number of her rhuematologist, and I made an appointment to see him. He made me feel very comfortable and I trusted him from the start. He told me that I had CREST Syndrome and explained what all the symptoms meant. He was very good at explaining any questions or fears in great detail. He was also very interested in any input I had on the disease or any of the things I had tried. He gave me my first copy of the Beacon and he had written an article in it. I seen him every three months and each and every time he would have an intern with him so they could see my raynauds. He would show them what my finger nail beds looked like under the microscope and would let me look too. He told me that all the interns ever got to see was a picture in a book and this was a treat for them. He also told me that my raynauds was the worst he had ever seen.

One morning I got up and I couldn't walk. I went into my rhuematologist and he told me that I had osteoarthritis in both knees pretty bad. He gave me cortisone shots in both knees and told me to avoid steps permanently if at all possible. Then he dropped the bombshell on me. He was leaving and going back to his hometown and open a practice there. I was again devastated because I didn't want to start again with a new doctor. He referred me to a female rhuematologist.  The past four years my swallowing has gotten worse, and she has put me on prilosec and since doubled the dose. I don't eat a lot of meat because I have trouble swallowing it. I have had 4 to 6 shots in my knees, and done physical therapy to learn how to walk taking the stress off of the knees. I have had rashes upon rashes on the trunk of my body. My hips continuously throb like a headache. I have gone to physical therapy to help strengthen my back and hips to ease the pain. I have severe dry mouth and have to carry something to drink with me everywhere I go, even to bed. I also have dry eyes, and I don't have tears when I cry. This is one of the most frustrating things because when you want to cry you want to feel the tears on your face. I have also been treated for depression. I have had trouble with a pinched sciatic nerve. I sometimes have trouble with anti reflex when I lay down for bed. I sleep elevated in bed but sometimes still have problems. I have to sleep sitting up in a chair sometimes. My hands are very swollen all the time and are very painful. I have very patriotic hands that turn red, white, and blue. I have a couple of fingers starting to draw. I am experiencing tight skin, on my mouth, hands, and lower arms. I have had ulcerated fingers countless times. My weight has been like a yo-yo. I will loose 40 pounds and then put it back on. It has been unbelievable. Months go by that I am not hungry at all and other times the site of food makes me sick. I try to eat 4 to 6 small meals a day and this really helps. Two years ago I was off of work for six months because I had 4 or 5 finger ulcers at one time. I almost lost a finger because an ulcer got so bad. My rhuematologist sent me to a plastic surgeon and he gave me a sample of Intra Site Gel (made by Smith & Nephew) which is a wound dressing to pack the ulcers in. It works great for me, but he told me that it doesn't work for everyone. I have lost 5 teeth because all the medicine I take covers up pain and infection. I don't know it until it is too late. The entire dentist scene is very unpleasant for me. I have gone to the emergence room with a 103.1 fever because of a kidney infection. I had to stay all day until they pumped several bags of antibiotics through me. I sometimes have trouble with my feet and ankles swelling. My face stays bright red almost all of the time. I sometimes have trouble concentrating on things and my memory isn't what it used to be.

I changed rhuematologists in December because my doctor went into private practice with several other doctors. She no longer gave me the time I was used to getting and I was hurried in and out fast. I no longer felt that she had my best interest at heart or wasn't the caregiver I thought I should have. It was hard for me to move on but it was time.

I am now seeing a new rhuematologist and on my first visit with her I found out that she went to medical school with my old rhuematologist. She still talks to him and she caught me up on the last four years of his life. She examined me and went through all of my paperwork and she told me that I have suffered long enough. She told me I wouldn't be returning to work and to call social security disability and get the paperwork going. She also talked to my husband Mark, and told him that any time he had a question or a fear not to hesitate to call her.

I went on sick leave from work October 1997. I applied for social security and had my phone interview the end of January 1998.  I had to fill out mounds of paperwork. The entire process took approximately 75 days.  I am happy to report that I was awarded social security and started receiving benefits April 1998.

In September 1998 I had an upper endoscopy done of my esophagus.  The internist who performed the test advised Mark and I that my esophagus wasn't strong enough to swallow my saliva much less food.  He also told us that I had a hiatial hernia at the bottom of my stomach and my intestines were red and inflamed.  He prescribed propulsid four times a day and that has helped a lot.  He also told us that they will not remove the hernia until I throw up everything I eat.  Oh something to look forward to, and I can hardly wait.  He also advised me to eat 4 to 6 small meals per day which I was have been doing for quite awhile now.

My rhuematologist prescribed salagen for my dry eyes and severe dry mouth.  It has been wonderful.  She gave it to me to try as she got some samples of it and it is GREAT!  I am happy to report that I have an occasional tear.  It doesn't take much to make me happy.

My eating habits have changed so dramatically this past year.  Sometimes I can eat six bites at a meal while other times only two bites which is very frustrating.  In the past fourteen months I have lost a lot of weight.  I have gone from a size 14 to a size 8.  I am currently battling nausea all the time.  I had another esophageal endoscopy October 1st, 1999 and they found out that the propulsid is not working anymore.  My esophagus isn't working at all anymore which we already new.  The propulsid was helping to push my saliva and food into my stomach and it isn't working any more.  My gastritis is also flaring up. The doctor took me off of propulsid and I am now taking Reglan (the generic is Metoclopramide) to treat the nausea, heartburn, and it also helps not to feel full all the time so I will be able to eat more.

I get up everyday and try and pretend I don't have a disease.  I push my body to do things until it says STOP.  I think your frame of mind has a lot to do with this disease.  I don't feel sorry for myself and I am a fighter and everyday is a new challenge.  I don't plan on giving into this disease anytime soon.  I am hoping that they will find a CURE for this disease in my lifetime.  Both my daughters get blood work done once a year because I worry I may have given this horrible disease to them.  Our youngest daughter Jill's sed rate was a little elevated this year.  It scared me and the doctor said it could be a lot of things so don't worry.    

I have a very supportive and loving husband who is a big help to me.  Mark and I have been together 21 years and married for 18.  I personally think that God broke the mold when he made him.  So okay I may be a little prejudiced.  Ha. Ha.  I seriously think we are soul mates.  We have two beautiful daughters. Jennifer is 23 and has completed three years of college.  She is in the process of filing out paperwork to go into the police academy.  When she graduates from the academy she will finish her last year of school.  When she completes her last year of college she will have three bachelor of science degrees.  Her dream is to work in forensics for the FBI someday.  She has to be a police officer for three years before she can apply.  Our youngest daughter Jill is 17 years old and a senior in high school.  She also wants to go to college and be a special education teacher.  She is very good with children and she also has a handicap.  She is deaf in her left ear and is a very compassionate loving child.  I thank God everyday for blessing me with my family whom makes me complete.

Mark adopted Jennifer when she was 14 years old. Her biological father would never let him adopt her but the court let her make up her own mind when she was 14. Every year for Christmas she would ask that her last name be the same as her dad Mark. She finally got her wish.