Roller Coaster

I hate roller coasters. They scare me! A lot! Except for some bizarre reason, I love Space Mountain at DisneyWorld. It must be because I can't see what is coming because it is so dark. I can't worry about what is coming next. I can only hold on!

My life has become a roller coaster. I had a few good days in the past few weeks. Coming off the cyclosporine has been a blessing. I have a lot more energy and felt pretty good for a couple of days. It was exciting! 

Then I hit the peak of the roller coaster that is my life and down I went again. I've woken up "old school" swollen and pink. I've felt the phantom hives and even had some real hives pop up. I've even resorted to Benadryl a few times. Ugh. 

I almost wish I hadn't had the good days because now I know what I'm missing. And that makes life even harder. 

Stress is a huge trigger for me and I can't seem to manage it well at all. 

I've had some new symptoms in the past week too. Swelling of the bottoms of my feet and some vision issues. Funky vision is usually an indication that a migraine is coming. I have taken lots of tylenol to help with my headaches. 

I was supposed to drop my afternoon hydroxyzine (antihistamine) on Friday to see if I could make it without it. My doc is hoping the Xolair (injection) will take over if I drop some of my doses of antihistamines. I haven't been able to do that yet...too reactive to risk it. I may try to drop that dose this week depending on how things play out. 

I'm really struggling with the swelling/weight gain lately. I only have a few shirts that fit (depending on the swelling of the day) and two pairs of pants. I do, however, have two closets full of clothes that I cannot wear. It's so depressing. I worked so hard for two years to lose a lot of weight and now I'm right back where I started. But it's worse because my swelling makes my body disproportional and it's harder to lose weight on as many meds as I am on. 

I want to rewind. Rewind almost 14 months and not have this condition that rules my life. I want to feel better. I want to be able to ride my bike and run. I want to wear the clothes in my closet and not feel disgusted by myself every time there's a mirror around. I want to have energy to hang out with friends. I just want to feel better. I know I sound like a broken record, but I really want to feel better. 

Please pray that the "good days" will come back and that they will eventually outnumber the bad days.