My Lymphedema story starts when I was 29
What is Lymphedema?
In simple terms, Lymphedema is swelling in a limb. It’s your lymphatic system gone bad or not working well.
Lymphedema is a buildup of lymphatic fluid that causes abnormal swelling of the head, neck, abdomen, breast, legs or arms. The swelling occurs when Lymph nodes are removed, or when the lymphatic vessels are damaged or missing.
There is no cure for it. It is most likely to be misdiagnosed, and people go for years without knowing what is wrong with them.
Years ago, I walked to work where I tended bar. I simply got up one morning and my leg was swollen. I didn’t think much of it – I thought I fell walking home from work even though I didn’t feel like I fell and had no scrapes to prove this. I also didn’t remember falling, which isn’t saying alot. I drank like a fish back then and didn’t remember much of anything when I drank, lol.
I walked into work before my shift one night and was talking to one of our customers. I happened to point out how swollen my leg was and I was immediately taken to the hospital, where I stayed for a week. I was diagnosed with a blood clot. After a week of bedrest and Coumadin, I was released with a diuretic and a swollen leg.
The leg stayed swollen. If I slept with my leg up, the swelling would go down (but not all the way down) at night, and as the day progressed it would swell. It never hurt, although sometimes it could be uncomfortable – especially if I was tired. The leg looked painful. People asked me all the time if it hurt. At night, yes.
The doctor said to wear compression stockings when I brought up the swelling. I went and bought compression stockings. Tried to put it on. Trying to wear this thing and it hurt like hell (not to mention ugggggleee…) and I quickly gave up the idea of compression stockings. I compromised and started wearing Legg’s Sheer Energy support hose.
I lived with Lymphedema like this for years. I never had a name for it, doctors couldn’t explain why the leg was swollen. A paramedic I spoke to said the same thing happened to her and she had the “veins stripped.” Whatever that meant – I still don’t know.
I got pregnant. I was first looked at by a midwife, and she was the only one who showed concern about my leg ad referred me to a doctor. He didn’t have a clue but monitored me and prescribed Heparin shots for me twice a day because of blood clot history.
Ten years or so ago I went to a heart doctor. He looked at my leg and said “Oh, that’s Lymphedema. There’s nothing you can do about it except live with it.”
Gee, thanks, doc. But hey! I had an official name for it, finally. It only took 15 years to find out what it is. The doctor could not tell me why or how I got it. I assumed (and still do) it was the blood clot. Even with a name, there was precious little on the web about it, and I quickly discovered that very few in the medical field were really familiar with it, and worse, knew of no treatments for it.
Sadly, this is still true today, although it’s getting better.
I waitressed for years with Lymphedema. After my son was born I decided I needed benefits and went to school and worked a sit down job. Big mistake. Exercise is good for Lymphedema, you see. Then I quit work to take care of my mom, the leg got even bigger. Then mom died and that’s all she wrote. Not working now, because the Lymphedema progressed into elephantiasis.
I’ve spent years of my life never understanding why I never had energy. I’m always tired. ALWAYS blamed this on my drinking, smoking, and weight. I stopped the drinking and smoking. Lost weight years and years ago, got into almost top condition, still had to lose 40 pounds (which never came off and I couldn’t figure out why) and I still had zero energy. Always felt like I was hit by a mack truck. I could never understand why I couldn’t do what my mother could do – seemed to me she was superwoman. I couldn’t do it, lol.
Finally dawned on me. Lymphedema.
I have learned alot over the last year, and I’m going for treatment. Let’s see how it goes.