Hi, my name is Laura and I am 42 and married to the most understanding man for 18 years. I have 2 beautiful girls ages 22 and 16. I have just been diagnosed with CREST. I was originally diagnosed with Lupus for the past 6 years and have been treated with all sorts of medicines and been to many specialist. Up to the time of the Lupus diagnoses, it was a long 8 years of convincing someone that something was wrong. I was going crazy.

In 1989, my youngest was 2 and i was so tired all the time. Just figures it was chasing after her. I was a restaurant manager at the time and also worked long hours. Then my joints started to hurt. They tested me for Arthritis and it was negative. They gave me muscle relaxants and I took tylenol for the pain.

In 1990 my half-sister was dianosed with Lupus. She had all 12 symptoms of the criteria. WOW, what a shock. At the same time I started having breathing problems. All pulmonary functions test were normal. Still having the joint pain and now i had shooting pain from the joints going down thru the muscles of my legs and arms. The doctors just looked at me with a look of disbelief. I would come home crying.

In 1991 my mother passed away and before she did it was a very stressful year. Stress makes the symptoms of lupus worse. 2 weeks after her dealth, I had a heart attack and my kidneys shut down. They blamed it on family history. And by this time my breathing was getting worse and they still couldnt find anything wrong with me. I went thru cardiac rehab but I never regained the strength or energy i once had.

We delt with everything as a team. My husband was very supportive. He would see me in pain, he would come to the doctor with me and tell him i was in pain. Nothing worked. They all thought I was nuts

In 1996 my father passed away. Since my mothers death, I was the sole caretaker of my father. Not that he needed that much taking care of, but my half-sister were not here to help me. I would sit with him and we would talk about missing mom, the fact that my hslf-sister never called him, ( which really hurt him), and general things of life. Then boom, I was helping him changed the pool filter one day and i broke out in the classic butterfly rash of Lupus. Confirmation at last, so I thought. I went to the University of Iowa and they told me nothing was wrong with me except maybe an allergy to the silica sand in the filter. I was devastated. Its all in my head again. My personal MD was sort of disappointed in the University. He felt I had Lupus but was unwilling to put it on paper.

In 1997 I was under alot of stress. I was executor of my fathers estate. My half-sister didnt like that and fought me tooth and nail. If only they knew. My father wanted to write them out of his will and I told him not to because he did love them as his own kids. Somedays during that time I wished he had. My syptoms were at their max, exhausted, sore,rashes, and then my hands started turning bright red and staying that way for hours for no reason. I had to make it to the end of the estate process, there was no way I was going to let them win. When everything was said and done in Aug, I collapsed. I was in the hosptial for 2 weeks with low iron, I had lost over 40 pounds in 2 months,I couldnt swallow without choking, and major heartburn. They scoped me and said I GERD and put me on Prevacid. Put me on Iron and couldnt explain my weight lose. I kept losing weight over the next few months until I was down to 110 pounds and skin and bones. Finally a diagnoses, Lupus. Well I knew that!!

1998,1999 and 2000 we all about the same, syptoms would come and go in severity and they would treat them as best they could. By this time I was on medication for GERD,Herniated disc in my back and neck, depression, mood swings, inhalers,muscles relaxants. I felt like a walking pharmacy. I became a basket case and so did my family and my husband. We all were at each others throats and it was terrible, ALL because of me. What a terrible feeling. I tried to take my own life at this point, (please dont feel sorry for me or say that I was stupid), I felt it was the only way out at the time. I now know that life is too precious to take. Its common among auto-immune patients to hit rock bottom. Its a reality check.

2001 was a better year. I was on stonger medication for my depression and my husband was beginging to talk to me about what all this was doing to him. I never even thought about him. Oh my goodness, did that wake me up.I finally realized that my kids were mad at me for thinking so little of my self to try suicide and be so self centered for not thinking of their feelings. They were both scared at inheriting Lupus and they were watching first hand what it did to me. We ALL went to councelling.

Since my heart attack, I have seen my cardiologist every six months. Everthing was fine until 2002. I started having chest pain again. The scoped my esophogus and my lower third of it was numb. So they blamed the chest pain on that, but I didnt get better with prevacid twice a day instead of once. They told me that as long as part of it was working and I could eat, nothing to worry about. My EKG's were all fine so I agreed with them. 2 months later, another heart attack. Luckily again, little damage to the heart muscle itself.

For the past 2 years, I had had trouble with getting up in the mornings. I would be stiff and sore and unable to move without crying. I had lost 4 jobs because of attendance problems and that broke my heart. I was a good employee and an excellent Registered Nurse. ( IN 1997 I graduated and got out of the resturant business). This just wasnt the person I used to be. I search for a rheumatologist to manage my Lupus better so I could be myself again.

That takes me up to now. I have gone through 4 rheumatologist and finally found one that is kind, caring, and honest with me. He listened to me, examined me and talked to me asking all sorts of questions. I purposely didnt transfer my records to him so he would make his recommendation on his findings and not what he read about me, most of which I have never read. Make me leary of what they have said about me. He ran his own test and the blood work came back postitive for at least an auto-immune complex diesease. Then he check my nail beds under the microscope and on that day, I happened to have what I called internal freckles on my hands. I was told they were splinter hemorrhages. I was scared. I bleed from the inside out and it flakes off with the dead skin and looks like a freckle. How freaky I thought.I had had those for years and never thought nothing of it. My hands started to swell and my ankles were huge. I wear dentures and I started to notice I couldnt put them in quit as easily as I could before. I noticed red blothing spots on my face and ears, my tongue would swell for no reason. CREST, 5 little letters than mean so much. My doctor explained what each letter meant and then ordered and ECHO of my heart to check for pulmonary hypertension. It came back postitive. Im now on isosorbide, cozzar, and lasix along with pain meds and muscle relaxants. I have an answer after all these years. I do have the dual diagnoses of Lupus and Scleroderma. Its been a long road to an answer but now I can deal with the reality of whats coming. Sort of ironic, I wanted to die before and now I will die before my time.

Anyone wanting to talk please feel free to email me. I'm looking for someone who is more advanced than I am and would like to talk to you about what to expect. Thank you for listening.