I contracted NF in late February 2002, in Ft. Richardson, Alaska, near Anchorage. My husband is in the Army and we were living there at the time. I got sick on a Friday evening (throwing up-I couldn't even keep water down). My husband wanted to take me to the hospital on Saturday, but I convinced him to wait till Monday morning. He still practically had to drag me in to the ER! The doctor hooked me up to an IV because I was dehydrated. Then he tested for pregnancy, which wasn't really an option. He told me I wasn't pregnant, then decided I had the flu and sent me home with some pills. My wrist was already starting to hurt then, but I didn't mention it because I thought I might have just twisted it or typed too much on the computer. It never occurred to me it could be linked to the illness. My husband woke up the next morning and discovered I had been up most of the night throwing up again. The pills seemed to make it worse if anything! I just remember trying to drink water and kool-aid all night and neither would stay down. And now my wrist was swollen and red with two black blisters, one on my wrist and one on the back of my hand. Our neighbors watched our 14 month old son, RJ, and my husband drove me to the hospital AGAIN. We got there about 6:30 in the morning and they took me in right away.

The scariest part about NF is most doctors just don't know about it. That was the case with me. Finally about 8:00 that night, my husband went home to take care of RJ and the doctor came in and told me he had called a friend in CA and they thought they knew what it was. They took me into surgery right away, and Ryan drove back to the hospital. He was there when I came out of surgery, but I don't really remember much because of the morphine. I stayed in the hospital for nine days with my wounds open and constant dressing changes. Those were the worst! The one doctor kept poking his finger in my wounds and digging around to keep everything from growing together before they could close me up. That was worse than the dressing changes, but I had my husband's hand to crush for most of it! I was in the ICU for the first half of my stay in a special room for infectious diseases. I felt like a freak but it was worse when I got moved to a regular room. There the doctors and nurses donned special suits and face masks when they came in to care for me. The only person who made me feel better was my occupational therapist, Capt. Beal. She talked to me very nicely and I knew she actually saw me as a person, not just a disease. She sure hurt my arm trying to get the range of motion back but I knew it was all for the better!

My wounds were open for two weeks. Just when they were going to close them up, I developed a terrible rash from the antibiotics and the doctors decided to wait for it to clear up in case I needed skin grafts. At least I got to go home for the last week. Ryan had to drive me back in twice a day for dressing changes, and he took care of flushing the PIC line they had given me when they ran out of places to put IV's and take blood. Finally they stitched my arm up. The doctor put a series of tiny slashes in it to stretch the skin so I wouldn't need skin grafts. I was begging them not to do the grafts because it would mean another night in the hospital and at that point, I just wanted to be home with my family. We went to a fancy military dinner the day after I got stitched up and it felt so good to be out of the hospital and/or house and be dressed up with my hair done! It felt so good to be done with the doctors, but I still had to go to Occupational Therapy most days.

Gradually over the next 3 months, I got almost complete motion and strength back in my arm, and luckily the NF was in my right arm and I'm a lefty. Now a year an a half later, I just have 5 long scars ranging from the back of my hand to my elbow. People I've talked to say it just looks like I was in a car accident. Even the spots where the blisters were have filled in most of the way. I have almost 100% strength and motion back. I think the scars are ugly, but I'm glad I still have my arm. It remains a mystery how I contracted NF because I hadn't been out the week before I got sick and I didn't have any visible cuts. It was February in Alaska and I'm a stay at home Mom so I had been inside the whole week or so before I got sick. I don't have any pictures to share because I didn't want any taken. Now I wish I would have, but at the time, I felt like a mutant and just wanted it to be over. Even in the picture from the military dinner, I stuck my "bad" arm behind Ryan so it wouldn't be in the picture, and it was covered with a kind of sock thing that therapy gave me. I've always been pretty healthy and this was the only time I've ever been hospitalized other than for my son's birth. I couldn't have gone through it without Ryan-I just hope nothing happens soon because he's in Afghanistan till this February and I need him there for big scary medical stuff.

I'm so happy the NNFF website was there for me so I wouldn't feel so alone. It really helped knowing other people have gone through the same thing I did. God Bless them all for sharing their stories, and thank you Ryan, for being there for me through the whole thing.