Kristen Aileen Santamaria

My Experience       Symptoms           The Aftermath           Contacting Me

I would like to take a moment to state that this page should not be considered a repacement for qualified medical advice, this is simply my experience. I am only sharing the parts of my experience that I feel comfortable sharing.

I am not sure when my Lupus experience started. I can say that several years ago, I asked my primary doctor to test me for Lupus because I knew my grandmother had it and I had noticed some simularities in symptoms. He tested and he told me that one test came back positive and the other negative, so he told me "let's just act as though you have it.

This past year, starting November 17, 1998, I have experienced many strange things and was not quite sure what to make up of it. I requested a visit to a rheumatologist assuming that this would provide me with the answers I was looking for. Unfortunately it provided me with more questions. She did extensive testing and told me that the results reflected that there was no way I could have Lupus. Now this left me curious becuase I have read many things and talked to many people who told me that you could have negative tests and still have Lupus, especially if you have had a positive test in the past. I saw my test results and saw that they were on the edge of being positive and asked that I be treated for what my symptoms said and not what my tests said.

I was told that I do have Fibromyalgia and they are tentatively giving me a diagnoses of Lupus, stating that because I want to get pregnant, they do not like giving me a diagnoses of Lupus because they would have to treat me with Prednisone which cannot be taken while pregnant. I am happy to at least have a name for my symptoms.

I am currently only receiving treatment which would be safe during pregnancy in case i were to become pregnant. I have taken Vioxx for pain relief and tried many other pain meds. I have also been diagnosed with atypical endometriosis which seems to have a connection with Lupus. I will be getting a second opinion in January.

Fatigue, joint pain especially hands, feet, neck and back, migraines, chest pain (costochronditis), asthma, abdominal pain, rashes, sun sensitivity, hair loss, low grade fever, cold hands and feet, depression, and swollen ankle.

The Aftermath

Is it any wonder I see a counselor every week? I was forced into disability from my job when I asked to work part time. I probably wouldn't be able to work at this point anyway. Once I was on disability, they fired me. I am currently filing charges against them. My husband and I have changed our life style considerably. We have canceled four vacations. The most recent being thanksgiving with our families. I could not bear the thought of a six hour drive and running around to visit people. I have left stores in the middle of shopping because I thought I was going to keel over. I once left my husband in the middle of a grocery store. I handed him a jar of spagetti sauce and ran from the store. I have found myself hanging over a grocery cart wondering if I would make it through the store. We are doing a lot less and I feel terrible about that but I just can't do everything I used to. My doctor told me not to cancel my holiday plans becuase he thought I would be more depressed, he was right but I would not have made it through.

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Contacting Me
kas5@lehigh.edu

I also participate in many list communities through onelist and can be contacted there. I moderate two lists and you are welcomed to join. You must go to onelist by using the link provided above and become a member, then you will be able to subscribe to my lists. I moderate Chryseis@onelist.com. This is a list for women who feel that they have health related problems from abuse they may have suffered, emotional, physical or sexual. I also moderate atypicalendo@onelist.com This is a list for woman with endometriosis or their friends and families to vent, get support, ask questions or share stories and jokes. Laughter is the best medicine. If you would like more info please feel free to email me at the above address.

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