And the “excitement” continues!

    First I wanted to give a quick update about my post-op appointment that I had mentioned in my last post. I saw the PA that works with my surgeon and she is happy with the way things are progressing! The X-rays of my back looked good and all of my hardware is in place. Now on to the exciting part. “Exciting” would be written in sarcasm font if such a thing existed… 

   I think I mentioned in a previous post that I don’t have feeling in most of my left leg from the knee down. I also have something called foot drop and this is all due to some nerve damage that was done before surgery as well as inflammation that is still present in the area. This should improve and hopefully will completely resolve but it could take 6-12 months, maybe more. 

   The problem with foot drop and numbness is that my left foot was dragging when I would try to step so I have not been able to move around much and last week my ankle collapsed from under me when I was just standing still. Since then it has happened a few more times and my foot is now very swollen and bruised. My PCP had me come in for X-rays and thankfully it is not fractured but it is badly sprained so I will be in an aircast for a while. 

  This pushes physical therapy back until my ankle sprain heals but my surgeon’s office is aware of it and are keeping extra close tabs on me and have scheduled extra post-op appointments. I will have a virtual appointment in 2 weeks and then another one 2 weeks after that. 

    I received my aircast today and I will say that I am much more confident when I move around now since I’m not worried about my ankle collapsing on me anymore so that is definitely a positive. I can’t sneak up on anyone with this thing because I sound like a pirate with a peg leg but at least I’m more stable. Physically at least 😂 Mentally, not so great but I know it’ll be alright eventually. Gotta keep moving forward!

    That’s pretty much it for this update I think. I’m really frustrated because this feels never-ending but I am trying hard to focus more on the positive things. I am not always successful at it but the effort is there. I also like to make jokes as a coping mechanism. Laughing beats crying any day!

   So here I am with my new accessory. It matches well with my back brace and walker. I’ll save those pictures for another day though - I’m not sure everyone is ready for all of that just yet lol. I know I sure wasn’t. 

She always figures out a way to be as close as possible to me. Velcro Dane!

Little by little

 I’m now about 2.5 weeks post op from my Spinal fusion. I intended to post an update a few days ago but I had some things I was dealing with so I just couldn’t make it happen. 

  I’ve had the expected ups and downs that are come after surgery but the overall trend is going upward which is really all I could hope for. I have not had anymore seizures since Halloween and my amount and quality of sleep has been improving. This has made me much more clear headed. Between the lack of sleep and the seizures over the past several months I really wasn’t able to think clearly at all or really function in any capacity. I have been quite zombie like. As you can imagine I am so glad to be seeing improvements in this area! 

  My pain does get intense still but is well controlled as long as I stay on top of it and I have my first post op appointment later today.  I’m still having some complications with numbness but I am not going to get into that right now. I want to talk to my surgeon and see if I can get some more input on it first.

  Positives for this past week: 

•Alex is not totally better but is definitely improving and was able to go back to the gym some this week!

•My sister in law so graciously let Skye come and spend a couple of nights there because this mama needed a break! I knew Skye would have a good time there and I love my sweet girl but she’s been quite clingy to me. She had the best time of course and I’m so thankful that they let her come and stay for a bit. 

•Colin made dinner one night last week and he’s already thinking ahead to what he will make one night this week. Going to try to make this a once a week thing. He is always so proud of himself when he makes dinner and he’s actually really good at it. 

•Aidan got a new job!! He will be working at Publix and I’m so excited for him!    

•We are so thankful for the continued love and care that is being shown to us by so many of our friends and family. As much as I like to be home and used to think I’d love nothing more than to isolate and never leave my house, the reality of it is that it can be a bit lonely. But honestly I haven’t felt that too much and that is because of so many of you! The texts, the long visits, and the quick drop-ins have all made this situation much more bearable. And the meals - we are oh so thankful for those. 

   As much as I want to do more now that I’m starting to feel better, I’m just not there yet and once again God has put the brakes on for me to make me slow down. I’m barely moving so I’m not sure how much slower I can go but I’m trying to follow the rules so I can get better. Little by little! 

Below is a peek into my morning routine. Two different days, same exact scenario! She’s just a big baby 🐾

10 days post op

 I’ve been wanting to post an update for a few days now but it has been so up and down that I guess I’ve been waiting for the right time. Kind of wanted to experience some “wins” so I could post some good with the bad. I like balance!

Overall it was a good week. Hard to believe Halloween has come and gone. Alex took the kids out to trick or treat in the neighborhood and my sister and brother in law brought my nephew over and joined them. I also was able to visit with my sister in law and niece a couple of times this week too. How lucky am I!?! There is just something so fun about loving on nieces and nephews - especially since my own kids are far past the baby and toddler stage. 

Skye dressed as Wednesday Addams this year and loves to paint so she painted this scene on her pumpkin!

She is also obsessed with Taylor Swift so she needed a pumpkin also 

Aidan took Charli to trick or treat at chick flick a. They were giving out dog treats

Only picture of myself for Halloween. Had to get into the spirit at least a little!

Charli wasn’t so sure about the Colinsaurus Rex

Ok so now for the update - I’m 10 days post op now - things are going as expected I guess. I won’t have my first post op appointment for another week so I’m going off of what the drs told me while I was inpatient. 

Recovery from spinal fusion is not an easy one for sure and I’ve had a lot of surgeries to compare it to. The pain level at best gets down to a 5/10 but tends to hover around a 7 or 8 if I move at all. I was sleeping on the recliner up until Tuesday night. It was easier to get in and out of on my own and I’m all about independence as much as possible. Sometime in the middle of the night on Tuesday night/ early Wednesday morning I had another seizure episode and as I was coming out of it (but before I was able to talk or function at all) I knew I was alone and it really put me in panic mode. I tried to call out and yell for Alex but no sound would come out and it was like my whole body was paralyzed. It took almost an hour before I was aware of my surroundings enough to get up and make my way to my bedroom (to Alex) and ask him to help me get into the bed because I was too scared to be alone. I think that was around 3 or so in the morning. 

If you think it’s scary to be woken up to your kid staring at you from the side of the bed in the middle of the night you definitely don’t want to be woken up by your spouse staring at you while crying (with a walker by the way). It would make a good scene from a horror film. Not sure Alex was able to fall back to sleep that after that surprise wake up call. Sorry babe.

So about the walker… PT and OT saw me in the hospital and made me bring a walker home to use because I have deficits in my left leg and foot. I’ve got something called drop foot and am not able to clear the ground well when I try to walk. I had this leading up to surgery as the severity of my vertebrae displacement progressed but we were hoping it would be gone after surgery. The drs feel that it is likely due to inflammation and compression of my nerves but we are kind of in a “wait and see” period. As of right now I can not feel most of my left leg from my knee down to my toes. They put me on IV steroids while I was still in the hospital and then continued with oral steroids when I came home but so far no change. 

So those are some of my negatives just to try to keep it real but I want to follow up with some positives because it’s important for me to focus on the good things! 

•I’ve figured out how to get my pain to a manageable level for the most part which enables me to rest when I need to and will ultimately help my body heal. 

•I’m starting to walk short distances in my house without the walker as long as I have something I can hold onto - a wall, the couch, etc. This allows me a little more freedom to be able to get myself a drink or whatever when I want to. 

•I have been SLEEPING! This is the biggest one as I had not slept more than 2-3 hours at night in months due to my pain with my fractured and slipping vertebrae. My longest stretch of sleep was almost 6 hours. Thank you God! I missed my pain med dose that night and it took a long time to catch up but it was well worth it. 

•I have been setting small (like REALLY tiny) goals for myself every day to get that sense of accomplishment and that has been helping me stay in a more positive mindset. Any tiny step forward is a win though and I know they will add up. I do still get really frustrated and grumpy (just ask my kids 😬) but I am trying…

•I don’t know about all of you but since we are past Halloween I feel like I am well within my rights to watch Christmas movies now. So far I have tried to watch 4 different movies with the kids and I fell asleep every single time. 😂 oops. I’ll keep trying - I love Christmas movies! 

That pretty much covers the basics. My support system has been amazing and I’m so thankful for every one of you. I’ve felt very loved and cared for this week and for the past couple of months since this nightmare started and it means so much to me and to Alex and the kids too. 

Skye has a specialist appointment today so I may post another update but it probably won’t be for a few days. It will be my very first trip out of the house since I came home a week ago so I’m nervous how it will all go. 

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!

 

They say that all things happen for a reason....

 

     I'm not really sure where to start here but in the past when something has happened it has always helped me to write about it. If you've ever read my pregnancy blog posts then this post will make a lot more sense but if not feel free to go check them out HERE (Colin's story) and HERE (Skylar's story). If you don't feel like going back to read then no worries.

    

      Let's just say that my pregnancies are horrible and dangerous and because of that Alex and I decided to take all necessary steps to prevent it from ever happening again. Plus, let me just be honest and say that I'm at my limit with three kids. They keep us pretty busy!! The day after Skylar was born (it'll be 5 years on May 10th!) I had a tubal ligation done. The doctor cut a section out of each of my tubes and voila! No more possibilities for pregnancy. Or so we thought....

     A couple of weeks ago I started not feeling well and I thought nothing of it at first because I can't get pregnant but after it persisted I went ahead and took a test to "rule it out". Not the first time I've done this and not the first time I was shocked to see it turn POSITIVE (remember that Skylar is an IUD baby). The next week was spent going to the dr multiple times for blood tests and while I was in fact pregnant, my hcg levels were dropping which indicates an impending miscarriage. This week I will be having surgery to have both tubes completely removed and also a D&C if necessary. 

    I have gone through every emotion possible for the past couple of weeks: shock, anger, sadness, impending doom, hope, relief, more sadness and a million others that I don't even have words for. It's confusing to find out you're pregnant with a baby you never planned to have and then find out soon after that it isn't going to be viable after all. I still have some pregnancy symptoms, though today I've noticed some improvement, and my brain is so overwhelmed and confused. 

 
 I'm sharing this because it really helps me to talk about it and process it all and because my friends and family who do know have really helped make this bearable for me. I can't imagine going through all of this alone. It's way too much to handle. 

    I really wish I knew the reason for all of this. Maybe one day I will, or maybe not.... What I do know is that I've got an amazing husband, 3 amazing kids, family and the best doctor and friends that I could ever hope for. 

   That's pretty much it. On Wednesday my dr will look at my tubes during surgery to see how they magically reconnected themselves or whatever. I'm quite curious to hear and if he finds anything I'll post an update once I'm up to it. 

   Maybe I'll be better about blogging again but let's face it - I've got 3 kids and a giant Great Dane puppy so it's probably not likely 😏

*UPDATE* Surgery went well yesterday. I'm pretty sore but it's bearable. When my doctor did my first tubal he removed about 3 centimeters from each side. Upon close examination he found that my left tube managed to create a channel and reconnect itself. He took pictures and gave them to me but I'll spare you from those. :) This is an extremely rare occurrence and all of nurses and anesthesiologists had something to say about it since they had never seen this happen with the kind of tubal that I had. Now I have no tubes at all on either side so there is nothing to grow back and I will not get pregnant ever again. I'm thankful to have the surgery done so I can start the healing process (physically and emotionally) and move on. Thank you for all of the thoughts and prayers!

*UPDATE - one week post op* Well this past week has gone really fast thankfully! Physically I'm healing really well and was really only sore for the first few days. Honestly most of the soreness was in my ribs and shoulder from the lovely gas they pump you full of during laparoscopic surgery. I'm still in disbelief that all of this happened and I'm pretty sure my hormones are still a little crazy. I'll blame my moods on that anyway just because I can. I've been walking at least 3.5 miles a day since day 4 and that's been going well so hopefully I can get back to the gym soon. I was just cleared to go back to the gym before all of this happened so it’s frustrating! In the mean time I figure between the walking and my blood thinner injections I have a great chance of not having any DVTs again. On that note, Colin has been helping give my Lovenox injections and he LOVES it. I'm not sure if I should be proud or worried that he likes stabbing me so much lol.

Right now I'm switching my focus to Skylar's 5th birthday which is in ONE WEEK!!! How is that even possible? I have yet to plan a birthday party or anything yet so I'd better get right on that... This is probably the last update I'll do on this unless something interesting happens at my post op next week.