In 1995, the ranch sold and though I was offered a continuing job with the new owners, I declined. I knew that I could no longer keep up. My hours had already dropped from 10-12 hours a day to 12 hours a week. My husband agreed and we bought a modest home on five acres so I could keep my horse and other ranch animals. I took the first year off to settle into the new house. My plan was to go back to work soon. Those plans changed in 1996. My symptoms continued to increase until I conceded to go to the Dr. yet again. The HMO gave me an appointment with a nurse practitioner. On August 20, 1996, I went to my appointment. I gave the nurse a list of my symptoms at the time. They were stomach upset, heartburn, vomiting, pain in the abdomen, severe back ache, sharp pain and aches in my joints and bones, hot flashes, extreme fatigue, blue fingers and toes, swollen fingers on and off, a positive ANA of 1:320, sore in nostrils, dry eyes and mouth (and a maternal grandmother who had Lupus.)

After giving her these symptoms I asked for another ANA test. She in turn asked how I had been sleeping. At the time I had had a few restless nights, waking for water or a trip to the restroom. I had also had a few unpleasant dreams. I was honest in my answer to her. The nurse immediately told me that she did not believe I needed another test and that she believed all of my symptoms were related to emotional issues. I went round and round with her. She continued to insist there was no need for further testing. I finally made a 'deal' with her. I told her to order a blood test for me and if it came back normal, I would consider counseling. She finally agreed to that. I was in tears through most of the visit. It was very upsetting to have to 'beg' and ultimately 'bargain' for a blood test. Two days later I received a phone call from this same nurse. She told me that my ANA had dramatically increased from 1:320 to 1:5120 and she was going to set up an appointment with a Rhuematologist Specialist.' There was no apology.

My appointment was set for October 1996. I arrived at the Dr. 's office feeling like I was finally going to get some answers and some help. My husband went with me. The Dr. was short with me as all the previous Dr. 's had been. After explaining all of the symptoms that I had been having, he did a physical exam. The physical examination lasted approx. 3-5 minutes. My husband sat in shock as the Dr. whipped through the exam. His (the Dr's) conclusion at the end of the exam was that he didn't see anything wrong with me, but he would, "go ahead and run the ANA test again" anyway.  At my return appointment, I was told in a very quick and impatient manner the following, " I don't see anything wrong with you even though you have a history of a positive ANA. I believe you need to seek counseling as Nurse --------- suggested. You do have a positive Amylase but that doesn't mean anything. You may have a sleeping disorder. I don't see anything that I can help you with." With that he walked right out of the door leaving me sitting there with more anger than I had felt in many years. I immediately stormed out and down to the records department. By the time I arrived through the doors, my fingers were deep blue. The gal behind the counter thought I had ink on my fingers.

I then went to a Dr. recommended by one of my husbands patients. He did a retest of the Amylase. The test was negative. He said I definitely had a connective tissue disease, it was a matter of which one. He requested copies of my previous records from my HMO. After due time I called to see what he wanted to do next. Blood tests? Appointment? He would not return my calls. (The only reason I can think of for this, was that this Dr. knew the Dr. I had seen through my HMO and may not have wanted to get involved)  During this time I began to look over my amylase test results from my HMO. What I found was that the medical record number on the Amylase test was not mine. I called the original Rhuematologist to let them know what I had found. I left several messages with the nurses. I was hoping that he was just confused because of the Amylase test and that once he found out about the possibility that it wasn't mine he would make another appointment with me and order new tests. He would not return my call. The nurses on the phone continued to tell me that it was not possible to make that error. I finally brought the results into the office and asked them to look at it personally. (I have to say this -- the drive to my HMO is about 1 hour from my home) She told me I was right. The number belonged to a male patient. (The high ANA was mine, it had been repeated twice and was steadfastly the same. It was also done at a different time then the Amylase) Even with this information the Dr. refused to return my calls or order new blood tests.

I then called the Lupus foundation. I told them my symptoms and asked if they could recommend a Dr. who was educated in this area. They were very helpful and kind to me. They recommended one not 15 minutes from my home. I called and set an appointment immediately. They saw me within 1 week. On my first visit he did a nail-fold test and diagnosed severe Raynauds based on the abnormal loops he saw and my history of color change. He also told me that there was a 90% + chance that I had Scleroderma. He ordered repeat blood tests and prescribed medication. He put me on Prilosec, Procardia, Propulsid, Prednisone and Naprosyn.  On my return appointment. He reiterated his probable diagnoses. After a few months under his care I developed another rash. My Dr. ordered a biopsy. The results were Lupus Erythematosis. It was now confirmed that I had 'Overlap Syndrome.'

I made the decision to enter into arbitration with my HMO. I tried calling MANY attorneys. All said it sounded like I had a good case until they found out who the HMO was. Each and every one of them at that point would say..., "Sorry, I don't think I can help you with this." After months of trying to get an attorney to help me I decided to represent myself. My research included trips to the Stanford Medical Library, local libraries, Internet research, gathering information from the Scleroderma Foundation, the Lupus Foundation and Sleep disorder centers, and a very long deposition from my new Dr. I prepared for almost two years. I even had medical information in my possession from the very HMO that I was going up against proving that everything I was claiming was correct.

The day of the arbitration was wretched. I was not allowed to use ANY of the information that I had gathered. The reason I was given, was that I am not a medical Dr. and therefore cannot present any medical information. I had to sit there and do nothing. The questioning was awful. I was made out to be an emotionally unstable female with no disease at all. When I hesitated at one of the questions...( I always think before I speak) the Judge actually made a sarcastic remark that I reminded him of Bill Clinton. The Judge, HMO attorney and the Dr. all had a chuckle. It wasn't the only sarcastic remark that was made. There was even a jab thrown at me after the Judge saw my cross pin that I was wearing. He informed me that Drs. "Are not Jesus Christ you know" ( My 14 year old daughter had ran away from home just one week before arbitration and a friend gave me the pin for hope. And yes, we found her. By midnight the very night she left. Praise God.) The Dr. laughed as he told how ridiculous it was that I 'claimed' my fingers were blue after my visit with him. But to top it all off, the HMO hired an 'expert' witness from Stanford. This Dr. got on the stand and claimed also that all of my symptoms were more than likely emotional. He testified that he saw nothing in my records that indicated any disease. Because the symptoms that I was experiencing were erratic and unpredictable, I was unable to give specifics like, how many times a month do you experience this or that. And how long does this pain last? The picture they painted was that I was making it all up otherwise I could answer these questions. The Judge gave me one month to come up with an 'expert' witness of my own. I was unable to afford $500-$600.00 an hour for such a witness. I lost the case. I now owe $2,000 to the Judge for his fee. I have no choice but to make payments in small monthly installments. I do not look forward to being reminded of that experience once a month for the next 3 years.

I continue to spend out of pocket for my private Dr., hoping and praying that I don't end up in the hospital. My health has stabilized under his care. My symptoms are the same with the exception of added problems with my joints, and the progressing stiffness of my fingers. However they are somewhat controlled through education and medication. I am in better shape than I was two years ago without any care at all. I keep most of my meals down and have learned how to take care of myself better as far as diet, rest, exercisee and general alertness to symptoms go. On a good day I can ride my horse and chase cows all day. On the bad days, I sleep and read.

The road has been an extremely difficult one so far. But with the Lord's encouragement and love, and the quality care of an educated Rhuematologist, life is good.  I can no longer work full time out of the home. I am finding ways to save and earn money from my home. I enjoy each day as it comes. When things are not going great I FIND something to be thankful for. My two boys, 16 and 17, have been wonderful. They are always helpful and supportive. My husband has also been through a great deal, from doubting me to brokeness when the truth hit him, to sadness when I am suffering, to the love and kindness and support that he so generously gives me each day.  I have had to redefine myself in my own eyes. I have always based the larger portion of who I am on what I do. I have always been strong and capable in any task set before me. When the realization set in that my physical being was now weak and I could no longer build a fence in the hot sun, bear the shivers of an icy day fixing pipe, or wrestle a calf to the ground on a daily basis, my heart sank. I felt about as worthless as a person could get. I became depressed and angry. When I accepted the fact that I lost the arbitration I simultaneously accepted the fact that I had some changing to do. The disease was not going to change for me, I had to learn to work my life around the disease. I signed up for some classes at a correspondence college. I began to spend my time enjoying my children and my husband instead of dwelling on the illness and the arbitration. Money is tight, the illness is with me, but the joy of life hasreturned. Thanks to the Lord's good grace.

I have learned a few things that I would like to share with you. My hope is that maybe one of you out there will somehow be helped in someway by my experiences. This disease can be a lonely and scary one. You are not alone. You can have joy and hope. With that in mind I offer the following words..... If you are having problems and you feel that your Doctor is not handling it well, go to another Doctor. Second opinion? Get a third and fourth if necessary. It is YOUR body and YOUR life. I did not keep a 'Journal of Symptoms'. That was a big mistake. If you have to answer questions about your disease to any professional in any field, keep a list. Write down your symptoms. I know that they come and go throughout the day. Some things as quick as lightening and others that drag on endlessly. But being able to specify the type, frequency and duration of symptoms cannot only greatly aide your Dr., but can help you keep an eye on yourself and be invaluable in a court situation. Also, if more people keep records of their symptoms, more accurate and specific information can be used in studies.  If you disagree with your DR. s advise, express your concerns before you leave the office. Discuss it with him or her. Don't be afraid to question your Dr. They are only human like you and I.  If you are having trouble finding a qualified Rhuematologist who is experienced in connective tissue disease, call the Scleroderma foundation or the Lupus foundation for recommendations.  If you hear of treatments, herbs or diets, or if you think of any question to ask your Dr., write them down. So often there are so many things to discuss with the Dr, we tend to forget to ask this or that.

Try not to be too distressed if your physical condition prevents you from continuing your job or lifestyle. There are many opportunities in life that are available. Think of it as a chance to do something new and exciting. Not everyone gets a chance to start over with a new direction in life. Your disease takes center stage often enough in your life and your family's life, try to give your family, friends or even that dog of yours center stage every day. Even on days when you don't feel so good. Your disease is not going to magically go away, but time with your loved ones can pass quickly. Don't let it pass you by. If those around you don't seem to understand your need for rest, remind yourself that even though you would like them to understand, they simply can't unless they know the feeling themselves. Then tell them you love them and go lay down. Don't try to go without your rest for the sake of guilt. You will only make it worse for yourself. It's OK to take a nap. You have a disease that demands it from time to time. (There are times when naps during the day can harm your nighttime sleep resulting in additional fatigue. Please discuss sleep patterns with your Doctor to find out what is healthiest for your situation.) If your having a 'good' day, take advantage of it. It is one thing to rest when you need it, it is another to take it easy if you know you have an event that evening you want to have energy for, it is quite another thing to not do ANYTHING because it 'might' make you tired. If it's a good day....GO HAVE FUN WITH IT!

It's easy to dwell on the negative. Try leaving notes for yourself around the home or office that make you smile. Try dwelling on the positive. No, it is not always easy. Try anyway. You're too tired to do anything but sit? Your joints hurt and you can't walk? Try sitting outside watching the birds or the clouds. Take a nap on the porch. Fall asleep to the breeze. Look at the stars. Pet your dog. :) Don't assume the worst. Hope for the best.

May the Lord Bless you with His love in your times of pain, frustration and anger. And may you see and feel the little joys that He brings you each day. (Like that little bird singing outside your window - or the smile from a loved one)

I have always wanted to work with teenagers on some level. In two and one half years, Lord willing, I will have my AA in behavioral science, my AS in health education. AND a certificate as a drug and alcohol specialist. Once these degrees have been obtained I can go with it. I will be able to attend junior high schools and high school as a guest speaker on drug, alcohol and health issues combined. I will be able to set my own hours, working one hour at a time at my own choosing. AND educate and help, and be useful in the lives of as many teenagers as possible. Making semi decent pay. I always thought that I would never be able to attend college with this disease. I was wrong. There are MANY programs in the college system that work for people ni our shoes. We are considered handicapped to a degree. I am able to obtain a key to the elevators so I don't have to take the stairs. I am able to have someone assist me in note taking if my hands become stiff or swollen or numb. And have found wonderful counslers that have worked with me to give me a schedule that is bearable. Going to school on Monday, Wed and Friday for four hours and having Tuesday and Thursday off. I also bring a pillow to school with me everyday to lean on because of my back problems. I also have installed on my PC a program that allows me to speak into a mike and it types automatically. Needs much pratice to get it used to my voice but will be VERY helpful to me. They have worked the schedule so that I have no wasted classes. ( IE: Basket weaving - LOL )

I also have been needing some tests run that I have not been able to do because of insurance. Well, through the ears and eyes of others I have found a new Dr. in the Kaiser system. Yes, at Kaiser. However it's a totally different hospitol. I still cannot bear to return the original Kaiser that gave me so much trouble. This Kaiser hospitol is an hour plus drive, but worth it. I miss my Dr. that helped me so much over the last two and a half years, but we have kept it open so that I may see him whenever I need or want to. My new Dr. is young and loves to diagnose and discover. I have been seeing him for two months. So far so good.

I still deal with daily problems such as stiff fingers, colds hands and feet, vomiting my meals if I don't take my pills, fatigue, cramping muscles, rashes on my face and the skin on my face is also becomming tighter. But nothing that is causing any extra problems for me. All in all I feel better today than I did 6 months ago. I still rest when I need to, take lots of pills and all that wonderful stuff, However ALL of my symptoms have been put on the back shelf. My determination is to finish school one day at a time and go from there.

The Lord has blessed me with new hope.

I had the opportunity to speak at a sleroderma fund raiser. I heard myself talking about how angry I was at the way people veiw me. Over-reacting etc. I determined to change that by pushing even harder. To know in my own heart that I really am doing everything I can. Being active and having goals is so very important. All of my energy is going into school right now. And I love it. What about time with my family? Well, even though that time has been shortened the quality has improved ten-fold. I am happier and feel stronger emotionally. That makes our time together much nicer.

Well, that's about it. Oh one moe thing I would like to share some vitamins that I started on a few months ago. I have been told by nutritionalist that there is no vitamin that will help. WRONG! I found a book that list several. Just simple vitamins that you can pick up in any grocery store. I don't have that list right in front of me, but will get it to you with in a couple of days.

God Bless you all. May He give you peace and hope and comfort in your lives.

Check with your Doc. before taking these. Everyone is different.