My Journey into Lupus Continues

Thank you, my loyal followers for allowing me to vent yesterday, so I now continue Monday's blog about my journey into Lupus. I ended Monday's blog with going back to school after Christmas break, but I wasn't feeling well, and I kept missing days of school and finally at the end of January I was not able to go back to school for the rest of the year. That is the short version. The longer version was something like this.

I did indeed go back to school after Christmas break, but something felt off. I keep getting fevers, high, then low grade. It was weird. I was achy. Most of all I was tired, so tired, I would come home from swim practice and go right to bed, my mom would wake me for dinner and I would go right back to bed after. I was so tired some days I barely made it through swim practice and I LOVED swimming. I hated not being able to do it. One day in school. One day

home sleeping. One day in school. The pattern went on. My mom took me back to Dr. Welby. He didn't like it. He did bloodwork, LOTS of it. He recommended me staying home and resting and doing my work at home until they figured it out, one day in and one day out wasn't good for me and after three week out, the school sends a tutor home. If I had done this since the beginning of January I would already have a tutor and not be starting from scratch.

Just as a NOTE:

I should say I was a nerd in school. I liked school. I loved Math and Science. I have a Masters in Math. For me to miss school, especially as a freshman when I was at my special request taking TWO math classes was unfair. I was overwhelmed.

So where was I, yes, bloodwork didn't find anything, so they did more which didn't find anything. They tested for anemia, Lyme's, Mono anything they could think of. I think they tested for mono a million times before they were done. They didn't know know what was wrong with me. Dr. Welby was really worried. He *affectionately* called me his problem child. I know I saw other docs too and they did more tests and then he sent me to CHOP (Children's Hospital of Philadelphia) to have more tests done. The only thing they tested me for that Dr. Welby hadn't tested me for was Juvenile Arthritis, because of my achiness. Guess what it wasn't. It meant more bloodwork. I was a human pin cushion at least I felt like one. My veins were so sore, they hid. I remember CHOP had to take blood from my foot because the veins in my arms and hands were so bad.

I think I must have been worried but I don't really remember being worried though. I remember missing hanging out with my best friend at the time Kelly and my friend Shannon. It was hard for them to understand me being so sick and why I didn't look sick when they would come over to see me but I wasn't allowed to go out. I didn't have the energy to go out anyway. I wanted to sleep. My brothers thought I was so lucky that I got to stay home from school. I just wanted to feel like going to school. I didn't have the energy. I know my parents were worried. I would hear them sometimes talking at night. My room was right across the hall from theirs. I know they worried about me and my mom would cry. I feel bad now because I would go back to sleep, I didn't even have then energy to get out of bed to go and comfort her.

At this point it is probably March 1991. I am sleeping now 18 - 20 hours a day and I am still tired. My mom has to wake me up to eat meals and I will fall asleep at the table alot of times. I am still taking Ceftin or Ceclor (I do not remember which) as an antibiotic since January because they are hoping to keep me healthy, which I obviously am not, and they don't want me to get any sicker. A tutor comes in the afternoons for an hour or two hours to go over my work with me, but I am tired most days. But fortunately for me, I think the work is easy and can complete ts in less time. One of the few times as a 15 year old I was grateful for being gifted with a brain. So I can go back to bed when the work is done. YES!

By mid March I am developing new symptoms, my hair, which is long, about halfway down my back, is starting to fall out. Every time I wash my hair, which I was trying to do every other day or less, because it is getting harder for me to take care of now too. I know my mom will help take care of it for me if I ask, but she is so busy trying to take care of me and still take care of my brothers and so worried about me. She didn't need one more thing to do for me. And now my knees are starting to swell. I am having a very hard time getting up and down the stairs in my parents house. I think the tutor starts to come 3 times a week instead of every day. I just can't make it up and down the stairs unless I have to, so I stay in my room. The bathroom is upstairs so it is easier on me.

My parents have made an appointment for me with a rheumatologist. They didn't know who else to go to. CHOP was supposed to be our last stop, who supposedly would figure it all out. None did, and I wasn't getting any better. So we went to see, Dr. Quinn, Medicine Woman. (She was much taller than her TV counter part but had that long flowing hair and a warm bedside manner.)

Dr. Quinn noticed a symptom that I hadn't picked up on right away right away, my butterfly rash. Adding up her checklist. She asked out family history. My mom has Rheumatoid Arthritis. Her mom, my grandmom, has Lupus. "Ok, that is what I wanted to know," She told my parents and I straight up. "I want to do more bloodwork but I am looking for Lupus." Me, I didn't know what that meant really. I was exhausted, I thought, yeah! a diagnosis finally! I will be all better, back in school and nothing to it. My mom and dad knew different I guess. The were looking at each other sadly. She wanted to see me back next week once I had gotten the bloodwork done.

I bet you can guess what Dr. Quinn's bloodwork said. I had Lupus. My ANA and Anti-DNA and whatever tests she did way back they (to be honest I do not remember other than those two now which ones were done I could go back and look it up but it doesn't really matter now) were so off scale she was shocked she told us. She had patients she said who had had lupus for years who never got numbers as high as mine. Dr. Quinn didn't want to start me on prednisone too soon and have to keep upping and upping my doses. I was put on anti-inflammatory to reduce the swelling in my knees. I was given a dose pack of steroids, but not a full course of prednisone. She wanted to kick start my system and see what happened. She also said one of the reason my joints didn't bother me for as long as the did was because I was a swimmer. She recommended me getting back into it gradually, just basic aqua therapy a few morning a week, so my parents got our family a membership to the YMCA. It was hard but the water did make my joints feel better.

Unfortunately, Dr. Quinn's diagnosis and estimate for my recovery time now put paid on me returning to school for the rest of the school year. She thought I was recouping well but I wouldn't be well enough to return at all for my freshman year. (I cried for days over that) She wanted me work work on getting healthy so I could go back next year. She couldn't guarantee I would feel up to everything I had done in the past, but I was young and she hoped that since we had caught and diagnosed it "relatively" quickly. (At the time 4 months, did not feel like a quick diagnosis, but in talking to people who have taken years and years to reach this same place I had, I suppose it is), that I would recover most if not all of what had been lost this past few months. I was to continue my regimen of vitamins, anti-inflammatories, rest and swimming.

So began my life with Lupus.