McGinley Method, Take 2
I stopped blogging after Week 6 because I had to focus on getting through the last weeks of school and getting myself miraculously back to Wyoming again. I had a lot of emotions having to return to Wyoming so soon, and I don't think I would have even tried to go through with it if it weren't for the outpouring of support people showed through their donations to my GoFundMe and my venmo. I've been home from Wyoming for a few days and have already started re-writing my Boston Marathon training. Every time I think it's over someone tells me it's not.... and when it's the doctor treating you that says you can run... well, why the fuck not?
The week leading up to leaving for Wyoming was absolutely insane. For starters, my phone stopped working on the Thursday before. It kept telling me no SIM. My sister was planning to come over on Saturday with her husband so that he could help assemble the giant playset our kids got from Santa.... My hope was to have it up before we left so that my mom, who was watching the girls, wouldn't have to do much because they would hopefully stay outside and enjoy the novelty of the backyard swingset and clubhouse. Well waking up on Friday, Maebel had a little cough so since we're still covid conscious around here, before Mary planed to come over we took the girls for Covid tests to be sure. On my way home (tests were negative as I expected) I stopped at T-mobile to get my phone fixed... and it they said I had to take it to an apple store... which is 45 minutes away and I was planning on doing this playset thing... so I wasn't going to have time to go to apple for a while.
Mary cancelled on us because her daughter was sick. So we had to do the whole playset ourself! (My dad did come over, but questionable how much he helped as he basically just confused my husband haha! but having his better drill was helpful) It took us THREE full days and it was 85-95* and non stop sun each day! So... I never got around to getting a new phone and although I should have been checking my emails etc.... I just wasn't thinking because I was trying to compartmentalize everything and not think about Wyoming until I checked the other boxes in front of it. I am super impressed with how well we put the playset together though!
Super long story on the phone made short: it took 6 hours from the moment we left our house to go to apple and the moment we got home! They couldn't figure it out and ultimately I laid the law down and was like "I need a new phone... I'm going on a trip tomorrow and I need a phone" and they just gave me one because it was clear there was an unknown defect with my other one and I was still under warrantee. Because it was a brand new phone I had to re-upload all my apps and make it "My" phone again (get contacts back etc.) But there was just too much to do so I just was like "I'll do that when we wait for the plane"
Well... We missed our first flight... I can't even tell you how close it was. I made it one minute before the doors closed and they gave Matt an extra two minutes. I was like "he was right behind me" but he usually does pre-check so at security he forgot to take his i-pad out and had to go all the way back through. Fortunately they got us a new flight just a bit later and so we could sit, get breakfast, and I could set my phone up. We got on the plane with plenty of leg room (they upgrade our seat for free too) and after the flight landed I turned my phone back on and realized how many missed calls and emails I had from the McGinley clinic. SHIT. As it turns out I needed another referral for the CTA's. For some reason I missed that memo (dead phone) and just before my insurance had approved the previous CTA's so in my head I thought it was all encompassing. I don't know, in hindsight why would I ever think that? Insurance will add every bit of red tape possible! Anyway.... I call and find out we are going to owe $2,400 more dollars than we planned! I'm trying to figure out how to not end up divorced in the Denver airport, but Matt is so good, he was just like "we're here already, nothing we can do now but figure it out"... Ultimately we ended up using our mortgage money because we both get paid the day after our mortgage is due. Ugh. But stress level is at an 11. I at least hustled to get the referral in before the actual appointment so I can shoot for the reimbursement later.
We made the best of it! Used a bunch of gift cards I got to starbucks from students and a few more people donated to the GoFundMe which helped a lot. THEN the babysitter cancelled on my mom.... So I had to find a new babysitter from halfway across the country. That was fortunately the easiest hiccup of the trip, but c'mon! Everything going wrong! This didn't make me feel good about being out here.
My appointment wasn't first thing in the morning like it was the last time, so I was able to eat early in the morning (had to be fasted for 4 hours leading up to CTA) and we had a perfect weather in Casper so we explored a bit which helped ground me about the whole process. We arrived to get my CTA and even though it burned a bit, I coughed up the cash.... I got a picture this time with the MVP flex. I did notice it was significantly harder to press hard enough to be above 120lbs of pressure. My guess is this is partly because I still haven't fully adapted to the loss of muscle from the first round. I found that very interesting but pressed as hard as I could. I was sweating like crazy between the heat from the iodine, and just the amount of effort it took to create that force and hold it.... I was so relieved when the technician said "release"
I continued to feel stressed about this whole process, but the stress went away when I finally got to the appointment. Dr. McGinley showed me the baseline images from May again, showed me how much better things were now, after the first treatment. Then showed me exactly where there was still entrapment which matched my symptoms (more on the right than left which usually hasn't been the case but if you followed my blogs I actually blogged about that). As soon as I saw the images, all that stress and money has been worth it again. It's a shame this isn't covered by insurance because not everyone would be able to do what we just did. We barely were able to do it and we had a lot of financial help from friends and family and also from the government with the stimulus (and soon with the child tax credit) and had to stretch ourselves financially a lot by putting our mortgage off a day (which we wouldn't have done had we known) and maxing out every credit card we have. Did I mention I also couldn't find my debit card to pay? God, I had put it so safely in my wallet that it was stuck between two cards and I couldn't see it. Matt had been really chill about the money up until that point, but I could see on his face that he was going to lose his mind if I lost the card.
I got the botox put in. It hurt worse this time than last time. The first time they inject lidocaine to numb first, and then inject the botox, but to reduce the amount of needles they are now using a cold spray and to numb surface and I wasn't a fan. haha! But I will say I think that my legs feel less bruised having 50% less needles injected into me...
I wish that was where the bad luck stopped but we also got caught in freak hail storm when we were at a food truck place with Matts friend on our way back to Denver.... and then out plane was delayed almost 3 hours.
So overall, not the best experience but the one thing that went right was the thing we came for, so can't complain! It was 99% worth it to see it's working... I'll reserve my last 1% for when this last little bit of artery and vein is free and I can run. I feel pretty confident... So much so that I've already put together a return to running program. In about 4 weeks I'll be running 6 weeks I'll hopefully be running 5-6 days a week and I'll be 9 weeks out from Boston. So I'll get 7-8 Weeks of specific marathon training if all goes well.
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.
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.
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!
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! 😅
Welcome to my blog! I've been blogging for a long time on various platforms. My intention has never been to reach the masses, but rather to give myself a chance to reflect and journal. I feel it at least challenges me to be somewhat coherent, however you can expect ramblings and grammatical incorrectness here!
I've recently been diagnosed with CECS and fPAES and had it treated with BOTOX of all things... So I suspect to see more and more people looking for answers with that in the future and hope to continue blogging so there will be easy to access follow-ups as that was helpful for me.
NOTE: Apologies that some of the pictures incorrectly load sometimes. I try to keep up with the glitches, but can't always! Hope it doesn't impact the blog experience for all the PAES visitors.