One Year Post Op

 
 

This is what I sent to my surgeon on July 14th 🖤 I wrote here that I heard vascular compression surgery takes 3 months to get out and about, 6 months to feel like surgery was worth it, and 12 months to feel better than you ever have. I am now over a year out and it was accurate for me. My scar has turned white and I do finally feel recovered, but it did take the full year (and the 1st 6 months was brutal). Before I had all restrictions lifted, my doctors and I wanted to make sure with testing and imaging that not only did everything heal completely and correctly, but that all my organs and blood flow along with the grafts looked good. I'm happy to report we did get that amazing news from multiple specialists (along with even some unexpected additional benefits/improvements).

 

I remember back in July 2019 at my cardiologist's appointment the intern asked me what my quality of life was. That was actually the first time I was ever asked that at an appointment. I remember trying to think about it and at first said "well, it's ok because I have two daughters and they keep me going." Then the intern started asking more direct questions, are you able to stand and do chores and my sister-in-law who was with me said "Marlee, be honest." It wrecked me. I realized my quality of life was poor. I think the next appointment after that they asked me for a number and I said 3, which at the time looking back know that wasn't even accurate.

I had a friend ask me recently the same question of what it was right before surgery. I couldn't believe it came out of my mouth, but it was a 0. She then asked me what my quality of life is now and I shared a 6 or 7. She said "that's huge!" And that she's read that a 7 is actually an EDSer's 10. I then felt the need to explain my life is still different with fatigue and all that I can do and my comorbidities, but she understood this because she knows EDS. I had another friend six months ago ask me if I'll always continue needing my cane. At that time I did tell her that it could improve once I started exercising and physical therapy back up, but after thinking about it more, I realized I hadn't really been honest with her or myself.

I think a part of me still fought that it's ok to need adaptive tools and that every day can look different for me. My PT told me one day I may need a wheelchair and that another day I might not need anything, but to listen to my body and not feel guilty or that I'm failing if I do. It doesn't mean my surgery didn't work, it means I'm finally being kind to my body after years of needing assistance, but not knowing why or that it was real. A big part of the reason it's hard and scary to use something like a wheelchair is that some people assume you are faking illness if you can stand or walk. Honestly I didn't realize people used wheelchairs even if they could move their legs, they are called ambulatory wheelchair users. I learned if I didn't use a wheelchair I wouldn't be able to be out of bed or the house, or actually function when we got home (or the rest of the week). The freedom that mobility aids give, most EDSers once they actually use one, are mad they didn't start using one sooner.

 

 

 

I have written and rewritten this whole post a million times, especially once I get to this part. I think it would just help to share this quote from Jennifer Brea-

"My recovery story has become my recovering story. And since I hate simple stories, now that mine is proving to be anything but simple, I’m ready to share a little more of what my journey has been." 

I felt that it would be a missed opportunity if I didn't explain how I did win one battle, but I still have an enemy I'm up against. Now that my doctors and I know that surgery on my multiple vascular compressions was successful, what is the latest on my health?

 

 

I have always made sure to include even though my operation was needed and gave me quality of life back, I still have Hypermobile Ehlers-Danlos Syndrome, which caused my compressions. I have started describing EDS as a whack-a-mole. With EDS because it's multi-system, patients are usually affected by a lot of different comorbidities. We have to decide what is at the top of our to-do list causing the most severe pain/symptoms at the moment or interfering with functioning (or what could cause irreversible damage if let unaddressed or untreated). The problem with my list is that a lot of the diagnoses I need to look into, they are rare as well and can be difficult to find the right specialist knowledgeable enough to diagnose or even willing to treat you just like the compressions. I did receive 2 new diagnoses recently, but would like to get the other ones figured out before sharing all the details.

I planned to start having uninterrupted time to sit down to write posts, answer comments, research more about other diagnoses, and schedule those new doctor appointments once my oldest started kindergarten. The last six months I wanted to really soak up as much time with my family and make as many memories as possible, which we definitely did 🖤 As life goes with throwing curve balls, because of the current situation with COVID where we live, I am actually going to be teaching both girls at home instead for now. There's no way I could be doing it if I hadn't corrected my MALS, SMAS, NCS, MTS, and PCS last year. I have to admit that I am really excited to use my teaching degree again and pour into the girls a little longer after feeling like we missed out on a lot of those things when I was so sick.

 

 

Something that I wanted to make sure I shared in this post is that I would not realize seeing all the doctors I did when I was in a bad way prior to surgery would actually work in my favor. There were a lot who didn't believe I had the compressions or that any of my symptoms or pain was that severe. This past year when I saw some of those doctors again, they couldn't believe the difference in me and wanted to know all the details about my surgery and my story. I would've never guessed at the time that them witnessing how sick I was and how I'm doing now would help spread advocacy and awareness. I think that is good lesson that you just never know the why in our suffering.

 

 

Also my closed doors. Oh there.were.so.many. I couldn't understand at the time why I had to experience them, I was beyond devastated again and again. Not only have I been shown exactly why those surgeries or surgeons weren't the right option for me, but it opened my eyes that God was protecting me. Although I would meet some not great doctors along my path trying to get diagnosis and surgery, I would also be introduced to doctors that I'm now so fortunate to have on my team. Even if they may not have much knowledge on the compressions or EDS, they are in my corner and help me in any way I need them. I even have appointments I actually look forward to, which still blows me away. I know I can seem critical about the medical community at times, but the fact is there are doctors out there who want to help patients. I don't want to just complain or point fingers, I want to educate, give options, and create change and wow has God been making a way to do that. This past year what I'm seeing is that those closed doors for me are leading to open doors for others.

 

 

 

You may have noticed a theme in all the songs in this post. I couldn't be more grateful to be living again and never take it for granted this gift because I know so many would give anything for that and dream about it. I can't begin to tell you how surreal it is to be doing so many things I wasn't sure I'd ever do again like going to the beach and swimming in the ocean with my husband and daughters. For those warriors (or parents of warriors) still searching for answers or direction, I know you are trying to come back to life. There is hope. Please don't give up. What if the miracle's a moment away?

 

 

I asked those that reached out the last few months what they would like to see on my surgiversary post. The consensus was everything haha. So that's what I'm going to try to do :)  I have a 4 part series that I will be sharing soon. My readers have probably learned I like things organized and arranged in an efficient way. When people message me with questions or asking me to share about my experience, I've learned it's so much easier on me without having to try to remember everything and helpful for them (so they can also refer back to instead of rereading through messages) if I can point them to just one place on my blog to find everything. What should you expect for the Surgiversary Series? I wanted to publish a few other posts that people have specifically requested first, but here's a preview of the topics: More explanation on how I'm doing with symptom improvement, my full story that led to Germany, additional tips or things to know about diagnosis and surgery, and what is in the works for multiple vascular compression advocacy/awareness. Stay tuned.

  

 

If you missed my previous post op posts, here's three months and six months.

 

 

 

 

If you want to listen to all the songs on -> YouTube or -> Spotify

"Here she stands today
In her brilliant shining way

Fully alive
More than most, ready to smile, and love life
Fully alive and she knows
How to believe in futures

All my complaints shrink to nothing
I'm ashamed of all my somethings
She's glad for one day of comfort
Only because she has suffered

Here she stands today
In her brilliant shining way

Fully alive"