Cigna my insurance company in reviewing the transplant request has requested a couple of records- one of them a mammogram which I have never done (I turned 40 last year…..yes I should have done it then…..) so I have an appt scheduled for tomorrow.  The other gyne record I gave them so hopefully next week I will get approval.   Of course they can’t promise anything over the phone, it’s a clinical trial, medical director has to review, etc and my transplant case worker tells me it only takes medical director 24-48 hours to decide so I’m anticipating a yes.  I’ve come this far.

In the meantime these steroids are killing me.  I haven’t been on a DMD (disesase modifying drug) since October so my body wasn’t protected and was acting crazy.  I had three steroid infusions the week before last done in outpatient settings and I’m on the 2nd week of oral steroid taper.

The neurological symptoms are largely improved on steroids but my balance, mobility, vertigo, gait, fatigue, confusion, and all of that are just increased.  I can’t drive or walk much or do much of anything and that is very frustrating.  I’m eating clean making my own food with my delivered groceries and feeling good about that.  I would like to increase my physical activity but it’s very difficult.  I put on my fitbit yesterday for the first time since August and took a whopping 2500 steps which actually took some intention to do.  I’m going to try some chair exercises.

I’ve also applied for disability which is something I never thought I’d do.  I know it can take years to go through but hoping that my case will go smoothly.  I made a good contact at the local office who seems supportive.  I also have a disability policy I took out several years ago that’s only good for 6 months but that’s totally fine with me for now so hoping that will help.

So life in the meantime is about surviving your symptoms, trying to get your household affairs in order, being as healthy as you can, planning and being a full time patient.