McGinley Method: Week 6

Time for a Touch-Up

Well, after last week this isn’t exactly the weekly update I was expecting...

I finished off last week in a really good position- I had done drills and exercises that worked me up to a 10x1:00 run in my driveway. It was the slowest run in the world because i was constantly turning in the driveway, but hey! It was a start! I didn’t expect that “start” to be the end as well.

Monday: OFF. We were sick with normal non-Covid colds Friday and Saturday. On Sunday we started turning a corner and I would have run if it wasn’t literally below 40 and raining. Gross! Why not give myself another day! Well another day turned into two because my brother decided to move his cookout from Sunday to Monday so our first maskless Covid vaccine party! woo! I was still weary. We know literally sooo much about Covid. How many days you are contagious for, how and where it spreads the most... but I feel like I know nothing about the common cold, so I just kept my distance and tried to stay outside.... and I talked a big game about how good my legs were feeling, and they were feeling good! But sadly this was the last day this week they felt good.

Tuesday: 6 minutes
I took the girls both to the playground behind the school in town that has a really big and flat school yard area. I warmed up with all the usual drills and even had my GPS! I walked a bit before I officially started my watch then I ran a minute and walked a minute... I took a mental note that everything felt more normal, but still no shin pain! This is great! Then I ran and walked... I mean it didn’t feel perfect, it still was pretty sloppy feeling stride, but something needed to change... I ran a bit, walked a bit... oh my gosh I’m actually running....the pace was unknown but it didn’t feel as restricted as my driveway simply because there was more open space. Maybe 9:30 pace. Then I ran... and sudden shooting predictable.... LIKE CLOCKWORK- pain gripped my left calf. I’ve been saying through out all this “it’s definitely working, but I don’t know if I can run” and a few weeks ago with my right calf I assumed it was compensating muscles but had some concerns it was PAES. I never really have things occur on my right side so I’m not as familiar with the symptoms.... but my left side? Make no mistake, this is PAES symptoms. Exactly at the 6ish minute mark as is typical... (3:30ish mark for running, and not even a consecutive minute). I shot an email over to the nurse immediately because we just spoke, and I was way more optimistic then. Maybe my optimism is clouding my judgement? Maybe my shins hurt too, is it all just placebo!!?

She quickly got back to me that sometimes in the first 90 days people need touch ups and that maybe he missed a spot. They keep close tabs in the first 6 weeks because that’s when most people are free of symptoms. I’ve been symptomatic the whole time but it felt different enough that I could convince myself it was compensating muscle soreness... but this episode I’m sure it’s not. From viewing so many CTAs in the support group, there’s like big black sections where the dye can’t reach, so I’m not sure but I imagine it’s like a hose kinked in multiple spots, fixing one doesn’t make the water go through. But the dye is essentially his eyes, so if there’s no dye accessing the other spots where it’s “kinked” he can’t know. That’s at least my theory. So theoretically if I go back we will do the CTAs again and should be able to compare the previous ones with post Botox to actually see where it’s working and if it’s actually working. I read another blog where this happened and I hoped it wouldn’t be me, but reading that blog made me decide to do this in the first place because Dr. McGinley’s commitment to the patient really came through, and by the third try it worked for her. I’m in for the long haul (or at least 3 tries).

I immediately shot back and email asking about price and.... Ugh. Cheaper than the first, and second, but still a lot.... especially considering we just spent $15,000. Yes, you read that right. It’s important to get it done ASAP so that the first treatment doesn’t wear off ....so I set up a Go Fund Me.

Wednesday-Sunday
No need to break down these days individually. I spent it limping, crowd funding, having waves of deep appreciation for it all and deep deep sadness that the life I once knew could be over. I never expected I couldn’t run... but even worse, I can’t really do anything. It’s hard on me emotionally to witness the impact it has on my family. The kids don’t care now but someday when we want to hike and travel I’ll be dead weight. I’m committed to this process with McGinley for three full treatments, but also looking and preparing myself for surgery... and the surgery is hard to swallow because it’s as big of-if not more of-a gamble than the Botox... the only difference is the Botox you’re gambling money, the surgery you’re gambling long term health. The surgery can cause infections and irreversible damage. The scars are HUGE and since I also have compartment syndrome I’ll have those scars as well...Several people end up amputated because the pain is too great still, or they just can’t get blood into feet and eventually that’s the only option left.

Sample compartment syndrome scars.

Sample fPAES scars

You can probably see why I’m not exactly rushing to get my legs cut open in several different places. And It’s not uncommon to need multiple revisions for surgery for the same reason I need it for Botox. If they don’t cut out enough muscle they go in again, but cutting it out is permanent where Botox will just wear off it you’re unable to atrophy it by developing new patterns of movement. You can see how this invasive surgical option would lead to amputation actually being desirable. This is why the Botox option, although expensive, is the route I’m going. If it were covered by insurance as surgery is, everyone would choose it!

Go Fund Me

I’m not one to typically ask for help, but we really hustled to make it work the first round, and now I really do need the help. I’m up against a timeline that is impossible without help so... I’ve had to swallow my pride a bit. It used to be about running, but it’s just about having full function of my leg again now. Below is the link, I appreciate any help I recieve more than you will ever know!

Click the picture to donate!

Sunday
The absolute plus side of this week is that I survived blocking rehearsal AND the recital! I am NOT a very good dance mom, and hobbling around wasn’t really my plan, but I survived, and managed perfect buns two days in a row and mostly un-smudged make up! 😅