My name is Christina Foster (Chris is fine) and I am a 29 year old divorced mother of 2 boys, Sean, age 7 and Nicky, age 5 1/2. We live in Otisville, NY (a "sneeze and you'll miss it" town about 70 miles north of NYC). We share our home with a cat named Snickers.
My story starts in October of 1997. I had a cough that came and went, but ignored it. As time went on, the cough became worse, but I still ignored it. I woke up on a Saturday feeling "blah". Couldn't put my finger on the problem, but I attributed it to the fact that I had been working 60 hours/week and wasn't taking proper care of myself. There was also a lot of stuff going around the office (flu, bronchitis, upper resp. infections, etc). So I figured "great, I'm coming down with something". As the day went on I felt worse, but still thought nothing of it. On Sunday I woke up and my eyes ached, I had a sore throat (felt like I was trying to swallow past a lump in my throat) and my whole body ached and I started getting stiff. When I woke up on Monday, I had all I could do to lift my head off of the pillow, I could barely swallow and my entire body felt like I had been beaten up. I also had a low grade fever. I went to the doctor and he diagnosed me with the flu and sent me home. I didn't buy the flu theory since I did not have all of the classic symptoms of the flu and I had never had this much pain and stiffness with the flu before. By Wednesday, I was having a very difficult time moving and the pain was incredible. I had left work after having been there for about 2 hours and went back to the doctors. I demanded that he check for something other than the flu, but he again tried to tell me that it was the flu. Just to humor me he did a CBC. He almost fell on the floor when he saw my white blood count. He told me that I had a serious infection, but that he did not know where and immediately started running an antibiotic via IV right there in the office. Almost immediately after the start of the anitibiotic, I started spitting up and once he saw that, he knew he was dealing with pneumonia. He did chest xrays and sure enough, double pneumonia. I was to continue the IV antibiotics for 3 days.
My symptoms kept getting worse--couldn't eat, fever was steadily climbing and the pain and stiffness were gradually getting worse. In addition, I was getting weaker and weaker. I looked and felt like death warmed over and by Saturday I could barely walk, because I was (for the most part) paralyzed from the neck down. All I could do was shuffle and even that was a major task. My father drove me back to the doctors office and he did another CBC. My white blood count was even higher and at this point my temp. was at 106. I was told that if I did not get to the hospital immediately I would die. So, up to the hospital we went. I was poked, prodded, stabbed, etc by every kind of needle and tube you can imagine. At this point I was out of my mind with the pain and begged for them to either put me into a drug induced coma or kill me. When I got into the hospital, my lungs were only working at about 20% and I was screaming in pain (I never knew that this kind of pain existed. I thought childbirth was pain, but that is a walk in the park compared to what I was feeling at this point). I almost got my death wish fullfilled on Sunday, came that close.
They knew that they were dealing with the pneumonia, but did not know what the rest of the symptoms were, so I was subject to every test known to man (and probably some that aren't known to man). All tests came back negative, with the exception of the sed rates, white blood count and liver profiles through the roof. There were a couple of other factors which I do not remember, but they still could not come up with a diagnosis. In the midst of my battle with the pneumonia, constant chest xrays, bronchoscopy, etc. a rheumatologist was called in and even he missed the Still's the first time. I was finally released from the hospital with Prednisone, Elavil and Tylenol. About a week later I was still got getting any better, so I was sent back to the rheumatologist. It was by a fluke that he saw the rash (it wasn't there when he saw me in the hospital) and he immediately told me that I had Still's Disease. I went through all of the "normal" emotions of someone who has just been told that they have a chronic illness for which there is no cure -- the shock, disbelief, depression, confusion, anger and finally acceptance. I have come to the realization that this is now my life, like it or not, and I truely believe that God has gotten me through this far, so He will continue to see me through.
I have been on various medications, including Prednisone (started at 60 mg/ day and have gradually tapered down to 5 mg/day), Elavil, Amytriptoline, Tylenol, Indocin, Mtx, Celebrex (didn't work) & Plaquinil. I'm sure I've missed acouple in there...try to remember them all! In between these meds I have also had to have cortisone shots in my knees and shoulders. Currently I am on Plaquinil, Indocin, Pred., calcium, Antivert (for vertigo) and Tenormin (for high blood pressure. It went out of control and got as high as 160/110).
While I have not had some of the more serious ailments that I have read about, I still have a hard time keeping up. I have my "good days" and "bad days", and with working full time and then coming home to another full time job with the boys, it sometimes wears me very thin. My family has been good about it all, but it's hard for them. You can try to understand, but unless you actually live each day with a disease, you don't really know. I know that prior to my coming down with Still's I would never have been able to comprehend this in my wildest imagination. I worry each morning, "Will I be able to move? How bad will the pain be today? Will I be able to get through ok?", etc. It's also hard with the boys. They are very understanding, considering their ages; they understand that mommy just can't do the things that she used to, but it still bothers me.
My worst hit areas are my knees (being the worst), wrists and fingers. I sometimes worry about eventually having to have knee replacements and/ or eventually ending up in a wheelchair, but I guess I will cross that bridge when and if I come to it. In the meantime, I try to have a positive outlook and I refuse to let this disease get the best of me. Even on "bad days", I keep pushing. If, for no other reason, my children. I am glad that this site now exists, as it's nice to have someplace to come to where everyone knows and understands from first-hand experience.
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