A Flare

I've been feeling it coming on, joints swelling, chest hurting, cough, rattle, it always seems to happen when I go below 10 MG on the demon drug. I've tried every day to mentally battle it, to keep swimming, to tell myself I would level off, that it would be different this time.

It was not to be so. Yesterday Dr. Leeper listened to my chest and said if I weren't already on so much Remicade and Methotrexate, he would put me up to 60 mg of Prednisione. We compromised at 20. He couldn't believe I had been swimming that same day. How? he asked. How can I not? was my answer. I have a life to live, kids to raise, THINGS TO DO.

After Dr. Leeper, Amanda and I went to little 5 points. She really loves going down there, and it gives me joy to see that. We went in a shop where a bird had flown in, and the shop keeper was trying to shoo it out with a broom type contraption. She didn't have any luck at that while we were in there. We looked at vintage clothes, crystals, incense, trinkets and toys, and just plain wierd stuff. We ate lunch at a place where the front wall is a huge garage door (like at a mechanic). The door was wide open and a nice breeze came in. We were right on the street and we could people watch while we ate. It was nice. Then I could walk no longer, so I took up residence in the window of a bakery and sipped Lemonade while Amanda walked around. A guy with a teal painted skull walked by a few times. Some girls with about 80% of their bodies tattooed came by, and there was this one guy trying to sell everyone newspapers. If you wouldn't buy one, he became borderline violent, so we stayed as far away from thim as we could.

Next, we drove north to my next appointmnet. We were early, and there was a Great Clips across the street, so I decide to get a quick hair trim before my 6:00 appointment. That was mistake. I think the black guy cutting my hair had never cut a white girls' hair before. He took F-O-R-E-V-E-R. He started a 5:10 and finished at 6:18. At 6:00 I tried to get up from the chair and leave, but he woulndn't let me. I still have no idea what he was doing, but whatever it was, he did it ONE HAIR AT A TIME. My head weighs at least 1 extra poound because of all the goop he kept putting in there. And I have such a simple haircut! All he had to do was follow the cut, trim it up, blow dry it and be done. It was the strangest experience in a hair salon I've ever had, like some perverse twilight zone version of "Just a routine trip to the hair salon", with a hideous cackling and off-key music playing in the background.

Finally, I did make it to my next appointment and then back home. It was a long day and I was tired. My O2 tank ran out just as we got into the Alpharetta City Limits. Today was a setback medically. Not only does the DEMON DRUG interrupt my sleep cycle, but it impacts WHO I AM, HOW I ACT, and worst of all HOW I THINK. And then it takes SO LONG to wean back down again.

I struggled with the decision. When I was preparing my morning meds last night, I put the 20mg in. Then I went back and took them out. Then back in, then back out. Then when I was struggling to lift one of my feet off the floor with both hands to put on a sock, I succumbed. I put the 20 mg back in, and in it stayed.

I have become so swollen that I can barely walk, dress, move even. My weight is way up, I think because I'm so swollen. Of course it will go up again when I start taking more Predninsione. It's like a vicious circus ride that never stops, only winds tighter and tighter, with less options at every turn, fewer paths of escape.

And then there was THE DREAM. THE DREAM I had the night before going to see Dr. Leeper. It was the most horrifying dream of my life. I was visited by DEATH, taunted by DEATH, mocked by DEATH, until I finally woke up in a cold sweat and had to take a shower, change my clothes, and the sheets. It shook me to the core of my soul, making me fearful of sleep. But I did pray, and I was spared another visitation last night. Well, to be honest I didn't sleep at all last night, so it's kind of deceptive to say I was spared the visitation. The truth is, I didn't sleep at all last night, so upset about the FLARE, the Prednisone, and the visitation from DEATH.

I put my bathing suit on at 3:00 this morning, with every intention of driving to swim at 5:30. But when 5:30 came around, I realized I was way too unstable to drive, so I didn't go. Michael said he'll take me tonight and I'm going to go. It's what I HAVE to do, Its ALL I CAN do to fight back, my tiny window of defiance against this disease from Hell.

So I put my suit back on, feeling nauseus like I was about to throw up everything I've ever eaten. I asked Michael to take me to get a salad before swimming, thinking that I just needed a nice glass of Iced Tea and some rabbit food. WRONG. I just got sicker at the restaurant. So we came back home, my entire salad with us in a to-go box. So despite 2 attempts, I didn't make it to the pool today. It's like windows that keep slamming shut, and I hate it. I will try again in the morning.