I can recall with lots of details where I was, when I found out the Twin Towers had been struck, on September 11th, 2001. I can recall my emotions upon seeing the Columbine School shooting. I can recall in minute detail, the year, the day, the time, the movie theater where I saw the movie “Mrs. Doubtfire”.
You are probably thinking okay, I can understand why you remember those two tragedies that were world changing with lots of emotions. Why on earth do you remember so many details about seeing the movie “Mrs. Doubtfire”? For anyone who has ever experienced Cellulitis, that one word should explain it all.
Up to this time, my Lymphedema really did just seem like a cosmetic issue. Occasionally I needed to wear the ugly beige, not really skin toned, knee-high. My ankle itself was a little different looking than my right ankle, but not noticeably. (Read my post on What I Did Right, and Didn’t Even Know)
We had a family tradition of going to see a movie on Thanksgiving night. So as a family my parents took us to see a brand new movie that looked really funny, “Mrs. Doubtfire”. We went to see a 7:20 movie that night in 1993. I walked into the movie theater feeling absolutely fine. About the time Robin Williams was being hit on by the bus driver on his way home from his ex-wife’s house dressed up as an old lady, my left leg started to hurt. It hurt enough that I was uncomfortable. I was sitting next to my Mom and told her that my leg hurt. She didn’t think much of it, I didn’t either so we finished the movie.
By the time we were getting up to leave our seats, it hurt to stand on my leg. There was a burning sensation going from toes to my groin. I whined on the way out to the car about my leg hurting, my parents I’m sure figured I was just tired.
I got home and cried climbing the stairs up to my bedroom, my leg hurt so bad. My leg looked normal, I wasn’t running a fever. My parents at first didn’t take me very seriously. I’m crying, I’m trying to get to sleep, I keep telling my parents my leg hurts really bad. (I don’t blame my parents here, they were just as uninformed of this major issue with having lymphedema. I also may have been a little dramatic as a 15-year-old girl.) Our neighbor’s son, who was in medical school, was home for Thanksgiving, so my parents thinking this is nothing and wanting to placate me, called to see if he would come and look at my leg.
The med school student came over, looked at my leg. Nothing was red, nothing was hot to the touch, I wasn’t running a fever. I was an overtired, drama queen 15-year-old girl. I eventually got to sleep that night. I woke up, the next morning, my leg was a little red and a little sore, but the searing pain from the night before was gone. My friend wanted to go to the mall, so why not?
We got to the mall, my leg was killing me, I started to feel sick to my stomach and dizzy. My friend took me home. Now I am running a fever. My mom takes me to the doctor, who does a blood test and sends us directly to the hospital. I am admitted to the Pediatric Intensive Care Unit.
I don’t remember much from my time in the hospital, I slept a lot. But I do remember how bad those strong antibiotics burned going up my arms, those antibiotics burning holes in my veins, causing the nurses to change my IV’s location frequently. I spent 7 days in the hospital. (Probably the reason I almost pass out anytime I need an IV now.)
I was on and off of antibiotics for the next 3 months.
How had this happened? I did not have a single cut, scratch or in-grown hair on my left leg. I didn’t have any broken skin between my now fat (swollen) toes. I didn’t have any fungus like Athletes Foot on my feet. I did have Lymphedema.
I became aware, in just 24 hours, with what is every lymphie’s biggest nightmare. Cellulitis. Cellulitis can go septic like mine did. Cellulitis can do this in a matter of hours like mine did. Cellulitis can kill. Luckily, mine did not.
This was the first glimpse for me, that lymphedema wasn’t just a cosmetic issue. Luckily it is still my only hospitalization from cellulitis. I am not a person prone to get this regularly. But some people with lymphedema are prone to cellulitis and hospitalizations can occur multiple times a year. I was never warned by the vascular surgeon I was seeing that this could happen.
This is when, with hind-site being 20/20, we should have sought out a doctor who knew lymphedema. Again, according to the vascular surgeon, if I had been wearing my compression more I wouldn’t have gotten an infection. At this time he did say that my lymphedema was primary in nature, more or less saying that since I didn’t have a reason to have lymphedema, but I did that made it primary something was just wrong with my lymph system. Don’t run, don’t pound, wear ugly compression. This time I was listening a little bit better after having a life threatening infection.