Flare up

Lymphedema is a strange thing. It's rather complicated to explain. It happens to people that have their lymph nodes removed. Not everyone that has their lymph nodes removed get it. Some will get it with only a few nodes removed, some will not get it with almost all their nodes removed.

I'm right there in the middle. I've had 1/2 (little more than) my nodes removed under my left arm. I was warned of this and given pamphlets. Warnings to protect my arm from injury. Not to allow needles or blood pressure cups on that arm. Keep it clean. Protect it from sunburn and bug bites. Don't sleep on it. Etc.

When I began to first have symptoms I called my Onc. Kaiser in their infinite wisdom had me see my GP. As sweet and wonderful as she is, had clue none about lymphedema and told me to see my Onc. (Kaiser! It's better than nothing) When I did it took months to see the physical therapist. All in all I got the feeling that no one really understands this thing. I researched as much as I could. There are not many books on it and the internet was limited as well. All information said 'Get thee to a doctor!' I'm not finding doctors or at least these doctors very helpful.

What has been helpful was the physical therapist's instruction for manual lymph drainage. (MLD I call it my massage) Sounds dirty doesn't it? It's very simple really. You run your hand lightly over your skin in a pattern to clear all your lymph glands and move all the lymph fluid 'stuck' in my left arm over to healthy lymph glands. You start at your belly button and end with your arm. It all takes about 15 minutes. I do this twice a day. Three times on hot days when I'm at home at lunch.

I also wear a sleeve. I sometimes call it a sock. It's a tube of stretchy material that looks very much like the support socks my mom wears for her varicose veins. I don't always wear it, sometimes I forget, sometimes my arm is so almost normal that I don't think I need it. I was also given gloves, one with fingers, one without. These are horrid and I only wear them when I fly or the swelling is bad.

Friday morning I woke up to discover I'd been sleeping on my left arm. And it was still asleep. Sound sound asleep. Who know how long I'd been on it. I massage like a crazy person, trying to get feeling back into it and moving that fluid as quickly as I could.

As we're getting ready to go to SD I noticed a little red splotch on my wrist. I've seen these before. I'll get one or two and I'll massage and they go away without to much trouble. I slipped my sleeve on. It wont be as hot in SD but I'll be running around outside, this will help protect my arm.

Shortly after reaching SD my arm is driving me crazy. I peel off the sleeve and discover my entire arm is coved in blotchy red spots. Very much like the before photos on the Proactive commercials. By the time we get home, about 8 that night, I'm toast. I go upstairs to take a shower and fall into bed instead. BH is worried. He uses an Ace bandage to strap my arm to a pillow. This way I wont roll over on it in my sleep. I'm not worried. The pain is amazing. I won't be moving. At all.

Saturday. I am sick. Really really sick. I'm dying and can't get out of bed sick. My arm is hot. Did I mention I was sick? BH had to go to work. I lay on the couch and watched a movie. I dozed. I drug myself upstairs to bed. Took a couple of Advils and slept. When the Advil wore off, I took some more. At one point I knew I had to go to the hospital. I reached over to get my phone to call BH. My phone? Downstairs! I sit up and try to stand. Couldn't happen. The boys aren't home. I lay back down and wait to die. I pray death comes quickly. I doze some more. When BH comes home he looks at me and looks worried. He grabs a zippy bag full of ice, wraps it in a towel and chills my arm. The cold numbs the pain and I sleep.

Sunday morning I wake up and feel better. Much better. I can get up, move around. I feel human. I look up lymphedema flare up and see a picture of some womans arm that doesn't look any different than mine. When her flare up occurred she was hospitalized for 7 days on intravenous antibiotics.

If I'd made it to the Kaiser hospital they may have done that. I felt that sick. Thankfully the rest, Advil and ice worked.

So I'm on a renewed mission. I have always believed in alternative medicine. I've done herbal therapies long before it became popular. I grew many of those herbs myself. I have no idea what will help me with this. But it's time to start looking.