Surgery update!

    My spinal surgery was 3 days ago and my drs are pleased with how everything went. I was discharged from the hospital late yesterday afternoon and am definitely glad to be home. The pain reminds me of the pain I felt when I had my wrist surgery-likely because they did a lot to my bones then and now. Obviously this one has more of an affect on my overall movement though. 

  All in all though, recovery has been hard but should have a successful outcome which is really all I can hope for. I do have a lot of numbness in my left leg from the calf down to my toes and the drs put me on iv (and now oral) steroids for that but they said it could be a bit for that to ease up. It is likely due to inflammation around the nerves they messed with a lot and my body tends to not love having metal in it. 

  Due to the numbness I had to come home with a walker because my left foot drags and is weak so they don’t want me to trip and fall. I am trying to make the best of it and crack jokes along the way. Joking around is the way I cope, it doesn’t mean I’m enjoying this. Just means I’m trying to make the best of a not so fun situation  🤷🏼‍♀️ I don’t have pictures with my walker as of right now but it needs some updates and bling added first lol. I’ve already recruited help on that. 

  Shout out to all of the support and help I’ve had along the way this week though. My kids were all well taken care of - Aidan had the opportunity to go to the Fl/Ga baseball game with his girlfriend and her family, my parents came to take care of Colin while I was in the hospital because he was sick and missed the entire week of school, and Skye was living her best life with her Aunt Paigey, uncle Michael and cousin. Then for the cherry on top she went to see the Taylor swift concert movie with her bestie yesterday afternoon! I’m not expecting to see her out of bed until 1 pm after the busy weekend she had.

    But we are so thankful for the help and for all of you who reached out, checked on me (through me or through others), commented with support on my update posts, provided meals, gift cards, or donated for meals, helped with my kids, my dog, all of it. We are blessed and thankful. Let the healing begin!

   Unfortunately Alex had been caring for Colin leading up to surgery to minimize my risk of getting sick but now he has caught it. Please pray for him to feel better quickly! My kids are older thankfully and very capable of taking care and helping me but I hate that he’s sick. Also, I’d like him to not share this with me! 

  That’s all for now. Time to work on the healing process and excited at the thought of feeling better soon!

  Here is a link to our Meal train my sister made for us. We have quite a way to go before I am back on my feet and this has been such a big help to us.

Peace out hospital!

Charli missed me but Aidan took her to Starbucks so she was also living her best life 

Came home to these flowers from my sweet boy Aidan. Love that kid 🫶🏼

 

Need the right fuel for healing! Hospital food has definitely improved over the years for the most part 

One more week!

I have just 7 days left until surgery - I cant even begin to explain how relieved I am!! As I said in my last post, we do not have any proof that my back is causing my seizures but we do have a lot of hope that the two are related. At the very least, my back should feel much better once my surgeon puts everything back in place.

It is 3:30 am currently and I have been awake since 1 am. Before all of this started I would probably be up drinking my coffee so I could get ready to go to the gym to coach. Now I can't go anywhere but I also can't sleep because the back pain is unbearable.

 Life is kind of funny though because things are all about perspective. Yesterday a friend asked me how I was doing and I said that I was hurting a lot and didn't sleep much but I also had NOT had a seizure so it was a pretty good night! I could say the same about laat night. Only slept a couple of hours but no seizure so I'm good! 

I really really hate "seizure days" if you haven't picked up on that by now. My last one was Saturday. It takes me a while after a seizure to be fully conscious and it really knocks me out the whole day. Every time I have had one it has felt like I have lost the entire day afterwards. 

 Well, that is the update for now. We did have appointment for Skye yesterday as well but I will make another post for that sometime. I need to talk to her to see if and what she is ok with me sharing.

Update on My Back and Seizures

Here is the cliff notes version for those who want a quick run down of what is going on but don’t want to know details or just don’t like reading… 

I fractured my back (no exciting story on how, sorry!). Due to this, my vertebrae is not attached or aligned as it should be anymore which is causing a lot of pain and my back is “unstable”. I then started having seizures in early September which may or may not be related to the back issue. I had/have lots of dr appointments and tests and am having surgery on 10/26 to repair my fractures and spine alignment. I’d give the pain and seizures 0/5 ⭐️ if I could. Definitely do not recommend!

And here’s the long version…. I’m not going to apologize, you made your choice which one to read!

Just a little background for anyone wondering - I have several autoimmune diseases that I have dealt with for as long as I can remember and one of them that specifically causes a lot of issues is called Ehlers Danlos Syndrome. It is a genetic mutation that affects the collagen in my body which causes flexibility and unstable joints. This can affect any joint in my body - including the spine which is made up of facet joints connecting each vertebrae. 

When I was a kid I had a lot of “party tricks” which were really cool at the time but when I turned 30 I started experiencing many torn  joints and also stress fractures (both hips in the past and currently my back). Those party tricks don’t seem so cool anymore but how would I have known?! 😅it’s not totally my fault though, just in general the “wear and tear” on my joints happens earlier than most. 

My back has often given me trouble from this instability and I can’t remember a time when I did not have at least some back pain. That’s what the heated seats in the car are for, right?! Alex doesn’t believe me but I know I’m right 😉

Back in May my pain started to increase more and more and by June/July it was drastically decreasing the amount of sleep I was getting. The pain was getting so bad that I would wake up at 1 am, 2 am, 3am, etc and would be up for the day. This went on for months. 

I had an appointment with my PCP who sent me for a Lumbar spine MRI and to a spine specialist. I found out that I have bilateral Pars fractures (these are the part of the vertebrae which make up those facet joints I mentioned) which has resulted in my L5 vertebrae sliding forward across my S1. This is called Spondylolisthesis for those interested in medical terms. This has caused a lot of narrowing and compression on my nerves and explains my symptoms of pain, numbness down both legs, and currently drop foot on my left side so I kinda drag that foot along when I do try to walk. Lots of tripping going on these days - It’s quite a sight actually. Skye does a great impression that she’s already shown some people 😑 

My diagnosis is “Bilateral Spondylolysis with Spondylolisthesis”

I was referred to some Neurosurgeons by my Spine specialist but anyone that has dealt with medical issues (especially since Covid) knows that this can be a painfully slow process. Pun intended. 

Before I even had an opportunity to see the Neurosurgeons for a surgical consult I started to have seizures. This was definitely a first for me and scared Alex and I both a lot. He took me to the hospital where they did some basic tests (brain ct looked good!), blood work, and put me on seizure medication with instructions to not drive and to follow up with my drs and a Neurologist. 

The seizures continued every 3 days or so and at this point my pain was increasing. More tests and we still don’t have a concrete cause of the seizures. Two drs have suggested it could be something called Lupus Cerebritis since I also have a diagnosis of SLE Lupus but my lupus is pretty well controlled at the moment so I really don’t think it is that. Usually this happens when it is not well controlled. Alex and I are really hoping that it is related to the intense pain and lack of sleep I have been dealing with because that should be an easier thing to fix. 

We won’t know for a while but we’ve got to hang on to that hope because this has been HARD! My seizure med dose was increased a couple of times and I am now on the maximum allowed adult dose so we can not increase anymore but it has been helping! My seizures have been less frequent and less intense. Oddly enough, no matter how “bad” or “not so bad” the seizure is I am totally knocked out and barely remember anything for about 12 hours following.  

My first seizure was early morning on September 3rd. I have not coached since September 1st (I wish I’d have known it was my last time - at least for a long time - I probably would’ve made them do more burpees or something! 😂). I had no clue things would take this turn and unfortunately I have been feeling so bad most of the time that I haven’t fully processed it all yet. We are still taking a day by day approach. 

On the upside - surgery is scheduled and it’s only 10 days away!! My surgeon feels very confident that he will be able to greatly improve the way I feel once we get past the initial surgical pain. As far as the seizures go, we won’t know for a bit. Either way though I am looking at at least 6 months of no driving. This gets pushed back each time I have one. Now that’s a hard pill to swallow…. 

If you hear me make jokes about my broken back and how my kid probably “stepped on all of the cracks” on purpose, well, it may seem strange to some but humor is the way I deal with things. It sure beats bitterness. I can’t change it - may as well try to laugh a little when we can. There have been some very very bad moments that humor can’t make better or fix but if I’m having a better day and the opportunity arises, I’m definitely going to crack a joke or two!

 

We all know which kid is responsible 😂

If you made it through the long version, thanks for reading! If not, I get it. This is mainly for me to just get it all out. It is therapeutic for me to write out my thoughts and I know some people may be curious what’s going on anyway 🙃

I’ll try to keep up with adding quick updates here instead of Facebook. Keyword is quick! They won’t be long like this one. Promise!