Several weeks ago I visited my doctor's office to discuss tapering off my meds. It just doesn't sit well with me that I am angst ridden over the origin of every piece of food that crosses my lips, but then I inject myself with a medication each week that actually weakens my immune system. Intentionally. I want to gain some control of this disease. That shouldn't be so hard, right?
So my doctor gave me his blessing to start on this path. And he actually prayed with me about it. My doctor is awesome like that. We both believe in the Great Healer. We decided I would try to go 2 weeks in between shots and the 3, etc. until I figured out the lowest dose I could comfortably take.
I was so gung-ho about it! The day I should have taken my medicine came and went without the least bit of pain or inflammation. And then I went on to day 8 and day 9. On day 10 I felt tired, but nothing more so I laid down to rest during naptime. I felt a strange cramp in my foot as I rested, but thought little of it. And then I got up to get the kids up from nap. And I couldn't walk. I couldn't put any weight on my foot without seering pain coursing throughout my body. I had to crawl to my kids rooms to get them up and then crawl down the stairs on my bottom like a 2 year old. Next to my 2 year old who was thinking we were playing a game. Then I put ice on it as my kids watched a movie while we waited for Daddy to get home.
The pain got worse and worse until I was crying from the pain. They were tears born not only from the pain I was experiencing then, but the pain I had experienced almost 5 years earlier. Tears born out of pain, frustration, fear, anxiety, uncertainty, anger. Very familiar tears.
But this time my tears didn't fall on the face of a newborn baby who was blissfully ignorant to her mother's situation. This time they were witnessed by children who were fully aware that something was indeed wrong with Mommy. I tried to explain that my foot had a boo boo, but you just can't see it. My son told me to get a Band Aid. So sweet. But there was fear in my daughter's eyes. Real fear. And I felt horrible. But it only fueled my tears.
I crawled to the refrigerator, then to my bathroom and gave myself my shot. Once my husband got home, he fed the kids and put them to bed. Then I called a neighbor who is a great friend who came over to hang with my sleeping kids while my husband took me to the ER.
We waited for 2 hours, but the girl with the autoimmune flare up understandably took the back seat to the real life-threatening emergencies that came in, so I kept getting put to the end of the line. As we waited my foot slowly started to feel better as the shot started to work it's magic of destroying my white blood cells. So I decided to go home. My husband wheeled me out and I told the triage nurse we were leaving.
The next couple of days my foot continued to improve and I felt confirmation that my body is in fact not ready to come off my medication that quickly. I need to take slower steps and this week I went 7 days and 12 hours between doses. Maybe next week I can do 8. We'll see.
But the real story here is that the next day I was faced with telling my almost 5 year old that mommy has a disease.
Please join me in my next post as I discuss how that conversation went down. You won't want to miss it! It reminded me who is really in control in this situation...
Here's the next post!
Here's the next post!