Shannon Wagstaff

My name is Shannon. I am 29 years old. I have been married to Dan Wagstaff for over 11 years. We have three wonderful children Ivan age 9, Nicole age 6, and Laura age 5. We live in a small farming community in Idaho. We had been living a normal and happy life until I got sick on August 27, 1999. I had just started back to work after many years of being a stay at home mom. In July I had Gallbladder surgery and was recovering fine. I was so happy to be going back to work. I woke up one morning with what I thought was the flu. I had fevers, aches, pains and a sore throat. I called in sick to work a few days and thought I would be fine soon.

It wasn't until I got the rash and the pain got worse that I realized that I was not going to be fine. At a clinic I saw a different doctor each visit who had different blood work done. I was given creams for the rash and Prednisone for the swelling. No one knew what was happening to me. I felt so bad and the fevers were spiking up to 105.5`. I could not move without crying. My husband had to help me do even the smallest of things. Walking to the bathroom, getting dressed, combing my hair became things I could not do by myself.

About two weeks into all of the pain and blood work I had been seen at a different clinic. There they did more tests, more blood work, and still the doctor's were baffled. My white blood cell count was too high, my sed rate was too high. At one point they mentioned Rocky Mountain Spotted Fever, Cat Scratch Fever, Lupas, Lyme Disease, Hepatitis A, B, and C. They even thought I might have a really bad case of the flu. The doctor on that night referred me to a doctor in the same clinic and I saw him the next morning. He did more blood work and called in two specialist, and Internal Specialist and Rheumatologist. Two weeks later I went into the hospital. There they did more test an Echocardiogram, a CT of my abdomen, a Colonoscopy, chest X-rays, and more blood work. At one point they were taking seven vials of blood at a time. I was still having the fevers, rash, pain, fatigue, night sweats, and insomnia. I stayed in the hospital for a week taking three different IV antibiotics. With no answers they sent me home with all kinds of medicine to take.

I had an appointment with the Rheumatologist eight days later. It was at that time that he told me I had Adult Onset Still's Disease. I was always going to have it, it was never going to go away, and it was only going to get worse before I got old. I was so happy to have a name to what was making me sick. That it was not something that I was going to die from like brain cancer. The disease was going to just cause me troubles the rest of my life. He told me that we would need to check my Sed Rate regularly, at the time my highest count was 127. We would try many different drugs until we found one or a combination of several that worked the best for me. My future held many scary things. Things that I am still not ready to look at until the time comes.

He started me on Aspirin Therapy and kept me on the Prednisone. I also took a multivitamin, calcium, and an iron pill. I had become very anemic in the hospital. After a while he stopped the aspirin and on November 11, 1999 he started me on MTX shots. I also started taking folic acid. As he increased my MTX my hair started to fall out. He then add Leucovorin and that helped with the side effects. I am now taking 35mg of MTX a week and 15mg of Leucovorin. I had gotten off the Prednisone for a while, but recently started taking 20mg because of a flare. I know it will take a long time to get off of it again. My doctor wants me to have the best quality of life that I can. Prednisone gives that to me. I was just awarded Disability benefits. It will give me new choices of medication. My doctor wants to try Remicade next. I hope that with this new drug added to what I take now it will be just what my body needs to be as close to "normal" as possible.

One thing that has brought me through all of this has been my family. My husband and children have been there every step of the way with hugs, kisses, and words of kindness. My other family members have been there with meal's, babysitting and a large abundance of love, prayers, and hope. I have also found a new family. The people that I have met here on Stillagin's Island. They give me the understanding that only those with the same kind of illness can give. I can tell them things that I can't express to my other families. If you or someone you know has this illness please come and take a mini-vacation here. You will find good and true people that will support and love you.

I am still trying to come to grips with all the changes in my life. I have experienced many stages anger, denial, fear, and acceptance. It took a long time for me to come to understand and accept that I had a chronic illness. I must have gone through the first three stages about four times before I finally became "OK" with my disease. I will never be the same person I was in the summer of 1999. I just can't jump up and run downtown for milk or bread. I am learning how to live life in the slow, slow lane. The journey that this illness has taken me on has been a bumpy one. Now when I look at the future I just sigh and take one moment at a time.

Prior History that was written, the above is the updated version.

Hello to everybody. My name is Shannon. I am 27. I have been married to Dan for 10 years in may. We have three children Ivan age 7, Nikki age 5, and Laura age 3. We have had very happy life until August 7, 1999 when mommy got sick.

I had just started back to work after many years of being a stay at home mom. I was very happy to go to work and the kids seemed to be having an ok time with the changes. One morning I woke up and felt like I had the flu. Aches and pains all over but not to bad. After a few days of this my throat started to hurt. It wasn't until I got the rash and my pain started to get worse that I started to worry. I went into the doctor and they did all kinds of blood work and found I was running a fever. They gave me antibiotics, steriods, and a cream for scabies. I used the cream and the rash went away. The steriods even made me feel better.

A few days later the pain came back, an almost unbearible pain all over my body. I could not even take myself to the restroom. My husband had to help me off the couch. After a week of this I went back into the doctors. More blood test. No idea why I was still having the fevers and no idea why I was still in so much pain. They gave me Lodine XL to help with the pain. Two days later my pain got bad again and just being plan scared to death of what was happening, I went into a Quick Care Clinic. The doctor looked at me and said I had the flu but she wanted some blood work done first before she sent me home. After the blood work came back she came into the room and said, " You are one sick girl!!" Oh what a relief to hear someone finally believe me. I was sick!! My white blood count was way too high and she thought I might have Cat Scratch Fever. After more blood work and still no real answers she got me an appointment the next day with a doctor in the clinic.

The next day I went into the clinic and started down a road of many blood test and no answers. They test me for Rocky Mountain Spotted Fever, lupas, Lyme Disease, anything and everything. Finally four weeks after all of this started at an appointment with an Internal Specialist, he told me that I need to go into the hospital so that they could just test me for everything. I had already had a Echocardiogram, CT of my abdomen to check out my liver. After I got into the hospital I had a Colonoscopy and chest X-Rays. Plus many blood test, they were coming into my room and taking 7 vials of blood at a time. At one point my fever had gotten so high they had to put me on a cooling blanket to make it come down. It was 105.5!!

After a week of three different IV antiobiotics and still no idea what was happening they sent me home. I had a doctors appointment with my Rheumatologist 8 days later and he told me I had Still's Disease. After eliminating everything else that is all they had left. The next thing to do was to leave me on Prednisone and start checking my Sed Rate regularly. He also pu me on a multivitamin and an Iron pill, I had become very anemic in the hospital. The next six weeks are just a blur of pain and doctors visits.

He stated me on MTX on November 11. I am up to 17.5mg. I have been trying to decrease my Prednisone from 60mg, I am now down to 40mg. I feel ok. I have bad days were I have a hard time doing anything without taking a nap. The pain is bad put bearible. The stiffness is worse. I have a fog in my head that makes me not think right. My good days are good. I can move without to much pain and the fog is gone. I can do housework with resting spells but no nap. I have a hard time with my monthly cycles and the doctor is talking about a Hysterectomy. I will gladly do that is the pain will stop.

I have been through so many different emotions. Most of them caused by two things. The medicaitons and the understanding that comes with a chronic illness. The knowing that I have now lost the me I was and trying to come to grips with the me I am now. I will never be the same. I know that I just can't jump up and run out the door with three kids to run down to the store for a gallon of milk. I am learning to deal with life in the slow, slow lane. I hope that I will find the right mix of medicaition that will return me to as close to normal as I can be. But for now I will take one day at a time and love my family because I am still here.