Slow Going, Big Warning

Days since injury on crutches: 15Prognosis: Unknown (grim) Doctor visits: 4 Casts: 3

Another morning in a doctor office. The kids look how we all feel. Tired.

Today's post is a little cautionary tale. I knew something was wrong with the cast the first night we came home. I had pain before, but this hurt. Tight around my ankle, burning up my shin bone. Pain that kept me up until 3am, then woke me again at 6am. When I talked to a receptionist and my neurologist, they said things along the lines of "of course it hurts, it's a bad sprain." One receptionist suggested I could go to the emergency room because the surgeon was out of the office that day. But it felt a little better during the day. And I couldn't imagine it getting worse. Except it seemed to do just that.

When I called yesterday, the receptionist said it was good I had an appointment soon. He would look at it then. Okay, more medicine, then.

I was so relieved to see him until he said, "You need to keep it elevated."

"I am keeping it elevated. Constantly! It hurts right here."

"Well, then. Oh." He felt my skin pushing again the plaster on the topside of my ankle. "I see the problem."

Yep, there was a problem. The plaster was too tight so the ankle got progressively more inflamed and irritated. More swelling, more irritation, more swelling. Not a good cycle. He took clamps and spread the plaster. My skin burned anywhere the metal touched. Owie. More to heal.

It feels much better now. Uncomfortable. Sore. Cast. But not crazy-disaster-melt-down-pain.

My lesson was, again, the importance of advocacy in medical-care. It seems easier for symptoms to go untreated with my chronic condition. First of all, I constantly question- Maybe this is normal, maybe my system can't handle healing, maybe the CMT is causing extra _________ (fill in any number of words here). Second, we are all a little lost (me and my doctors). So it can be easy to write off pain, or difficulties as side-effects of CMT, when in reality the pain may be may be a whole different story.

I live in a rural area, so I don't have a team of specialists in CMT around here. Which is the case for many of us living with mysterious diseases. So I just need to take those breaths, check in with myself. It's hard to trust symptoms when you don't trust yourself, physically. Let go of that story. Trust my instincts. Get help even if I feel whiny or over-reactive.

I am paying attention now. I just hope everything turns out okay. Today he asked when we are seeing the specialist, and when I said, "End of August," he did not look pleased. I didn't make the appointment. I don't want to wait that long. We haven't even had the MRI yet. We have no idea what's wrong.

I hope, hope, hope that it just needs immobilizing and all of these efforts get us toward the goal of feeling better. If I hear that I need surgery after all of this-

Ugh, I can't even go there. One day. One challenge at a time. With lots of hoping.

I miss photography. I really am stuck in bed. All day long. I can't go out because I need this foot above my heart. For at least another week or two. I took this photo through the bedroom window. Bike parade with the neighbors. At least the kids are enjoying summer!

Me? I would enjoy normal night's sleep. Please.

I haven't even been able to enjoy the Olympics because our recordings keep messing up. But that's another post. Time to chase that sleep. :)

Wishing you good health!