Tuesday, December 5, 2023

Always Look for the Silver Lining!

   Always look for the silver lining!

    I have this conversation with Skye often as she is dealing with her own health issues. It's not easy to do and there are times that I want to throw up my hands and just give up. I don't have all of the answers as to why things happen and I don't know when things will get better. Or if they will get better for that matter. I definitively have my moments of frustration and lose my cool more than I'd like to admit during trying times but I really do make an effort to stay positive and I feel like that helps me get through the various trials I've been up against. I can't control the situations I find myself in medically but I can control how I deal with them. Skye still struggles with this a lot but I think it takes time and practice to switch that mindset and I have had a lot of both over the years! 

   A little over three months ago my life looked quite a bit different. I was your average busy mom always on the go driving kids to all of the places and activities and I was working a job that I really enjoyed. I was a group fitness coach for the last 5 years and I truly enjoyed working with all of our members, celebrating their successes, and writing workouts for them to (lovingly) complain about. It has been a huge part of my life for so long and I am so thankful I had the opportunity to experience it. 

   I have so much more I could say because I am very passionate about it but that is not the point of this post. The past few months have rocked my world and really changed so much about my life. I found out this summer (I think it was in July) that I had somehow managed to fracture my back in two places which may not have been so bad but when you combine it with a connective tissues disorder it causes a lot more trouble. I struggled with severe pain and barely any sleep for months but I'm stubborn and I still managed to continue on with things mostly as usual with some modifications given by my doctors. I was referred to a Neurosurgeon and was trying to mentally prepare for back surgery that I was told I would need to have. 

   What I did not mentally prepare for was seizures. My first one happened very early in the morning on September 3rd. My thrashing woke Alex up and I was unresponsive. It lasted for about 3 minutes and after a few more minutes I was able to respond to Alex by squeezing his hand like he was asking me to. After about 10-15 minutes I got sick and was able to start talking though I couldn't really form complete thoughts or sentences. I had never had a seizure before that so we went to the Emergency Department to be checked out and they started me on seizure medication while there. 

   A couple of days later I had a second one and this cycle continued every few days for several weeks. My dr increased my seizure medication until I was on the max allowed dose and at that point they finally spaced out to once every 5-7 days or so. At least now we knew what to expect but still had no answers as to exactly why this was happening. All we had were theories and the hope that getting my back repaired would help. 

   I am happy to say that since my back surgery a month ago I have only had 1 seizure. That was at 5 days post-op so I still had a lot of inflammation around my nerves. I am still on the max dose of medication for them as well but now is not the time to try to wean me off of the seizure meds just yet. 

   You know how you make plans in your head of how things will go and then things go absolutely nothing like you expected? That has been the case here. I planned to have the surgery, take off probably about 6 weeks from work and driving to heal, do some physical therapy and then voila! Back to my usual self! Instead I have been unable to drive for over 3 months and am looking at several more months ahead of me before I am cleared, I have barely left my house aside from drs appointments and I am no longer physically able to coach. 

   You're probably wondering by now where the silver lining comes in. Well I am getting there, I promise! This unfortunate series of events has provided me opportunities that I didn't even know I (and my family) needed.

  •  I have been able to be home with Skye every day for 3 months. As I said before, she has her own medical issues and because of that she is doing virtual school this year. She has been quite clingy to me and being here for her in a time that she needs me most has been priceless. 
  • Alex is working from home still which we never thought would be the case and having him close by has been such a blessing. 
  • About 2 weeks after my seizures started Aidan turned 16 and was able to get his drivers license. This has been such a huge help! Giving me rides to appointments, carpooling Skye to dance and even grocery pick ups. I'm thankful that Alex wasn't left to handle all of this on his own. I know he can (and he has many many times in the past) but this is a much longer amount of time than usual.
  • The outpouring of love and prayers and meals and surprise gifts from so many has meant so much to us. I am not good at accepting help typically and in this season I have had no choice. It has shown me that I really do have so much to be thankful for! Not that I didn't already know but it has just been much more front and center. 
  • And last but not least, I didn't even know it was possible but my level of appreciation and love for Alex has grown so much during this time. I don't even have the right words to say for this one. He has stuck by my side for 20 years now - married for over 17 of these and we have been through so many experiences together at this point. He has always been here for me and stepped up even more when I have needed surgeries and things like that. But this time has been different. I normally am stubborn and very much like to accept minimal help even from him but I have never been as sick as I have been the past few months. I have never needed this level of help physically as I have needed the past few months. The seizures affected me to the point that there are many days I can't even remember and he has been patient and kind and never complained. Not one time. 
    I know there are more but those are just a few of the things that instantly come to mind. Blessings that I already had around me but maybe I wouldn't have seen some of these as clearly until my whole world felt like it was crashing down. 

And for that, I am thankful! 


Tuesday, November 28, 2023

Thanksgiving and Rollercoasters!

   First of all, I hope you all had a good Thanksgiving spent with friends and family - we spent Thanksgiving day with Alex’s side of the family and then celebrated a second day on Saturday with my side. We had “traditional” thanksgiving lunch on the day of and BBQ at the second gathering. I am definitely thankful for that because I can only handle so much turkey!


My 20th Thanksgiving with this guy! 

   We always decorate Gingerbread houses on Thanksgiving day so we did that after lunch and it’s always fun to see how they all turn out. Even my niece was old enough to help this year! She and Skye both enjoyed tasting the decorations as much as they enjoyed decorating I think. Alex’s dad always loved watching the gingerbread house decorating and he was definitely missed this year but we wanted to keep the tradition going. 

Gingerbread Construction Crew



Family Christmas movie! Charli begrudgingly shared my lap

    Now on to the rollercoaster part of my post. Obviously I can’t be talking about a real rollercoaster although I wish I was. Those are much more fun! I’m talking about the ups and downs of recovery and a life with autoimmune disorders. About 8 days ago I started tracking my temperature because I had been feeling feverish for the previous week or so. I didn’t start tracking until then because I didn’t have a working thermometer and had to get a new one. My suspicions were correct and I have been consistently running fevers. While this was not totally unexpected after this surgery it is definitely very frustrating! 

   Just for a little background info, back in early 2021 I tore a ligament and in order to repair it my surgeon  placed a titanium plate, screws, and an anchor into my wrist. About two weeks after that surgery I started to experience fevers and more joint pain than the usual amount that I’d dealt with for years (due to Hypermobile Ehlers Danlos and Raynauds Disease). I have been dealing with those autoimmune disorders and others for many years but we later discovered that the titanium kicked it up a notch. My body reacted to the metal and I was diagnosed with SLE Lupus shortly after that surgery. After many months of trying various treatments we found something that seemed to get it mostly under control and in fall of 2022 I was able to have the hardware removed. I felt so much better once the metal was gone! I still needed my long term medicine for Lupus but my daily fevers stopped completely, my flare ups were few and far between, and my blood work looked better than it had in over 10 years. 

   Fast forward to me fracturing my back that required a spinal fusion to be done and my only option was to once again have hardware installed. We hoped that being on my current treatment for Lupus would keep things at status quo but as of right now it looks like I may be back to battling the flares again. The hardware has to stay in for at least a year until the fusion is complete but it is really disheartening to know that I may already have to plan on another future surgery to have it removed. Honestly I really don’t even want to think about it at this point. Chronic pain is completely exhausting!

   This past weekend was a busy one, especially compared to what has been my “normal” for the past few months. We went on Thursday to be with family, went out Friday to get our Christmas tree, and then went out again on Saturday for Thanksgiving #2. By the time we left there my face was flushed with the classic Lupus butterfly rash and I had another fever. Sunday I woke up in terrible all over joint pain and yesterday was the worst day I have had in a while. The pain was a solid 9/10, unable to move or function the entire day, make me sick to my stomach and constant tears in my eyes kind of pain. My Dr fit me in for an appointment as soon as I was able to get there and they gave me a shot of steroids to help calm the flare down. We discussed looking into other treatment options to try but I am hoping that once I’m healed from the surgery that things will improve on their own. Thanks to the steroids my pain level is much more manageable today but that is more of a bandaid fix rather than a long term solution. 


Of course they had to choose the largest tree there. Look at those faces though - how could I say no?!?



Guess what Aidan is putting on his Christmas list now…

Playing with my sister and brother-in-law’s hedgehog Romeo



   That was a longer update than I intended but a lot of it probably wouldn’t have made much sense without some of the back story. As always I plan to take this one day at a time, one roller coaster at a time. And as always, I know it’s all going to be ok. ☺️ If you’ve been keeping up with updates and checking in or even just thinking about or praying for me thank you!  

Saturday, November 18, 2023

Baby steps!

   This week has been a mixed bag but I’m going to focus on the wins! I slept about 4 hours the night before last which was an improvement on the rest of the week and last night I got about 6 hours! Definitely feeling more rested this morning and a more positive. 

    My back is healing nicely and I’m now in my air cast for my sprained ankle. I am able to move around MUCH better now that with the cast on because it keeps my ankle from rolling. I have been able to be up and moving around more in my house this week. I still have not gone out of the house for anything aside from drs appointments but I’m trying to be brave and go somewhere tonight. We shall see!  

   My leg is still numb from the knee down but I told Alex I am starting to be able to feel some sensation at the top of a couple of my toes. May not sound like much but it tells me that the nerves are starting to heal which is really big deal and very encouraging. 
 
    My surgeon ordered a Bone Growth Stimulator for me and someone came and taught me how to use it yesterday. It is supposed to help facilitate the fusion in my back and I will use it for anywhere from 4 months to 9 months. It basically looks like a back brace and I wear it just for 30 minutes once a day so that’s not bad at all. 





   This morning started out a little exciting with me rolling my ankle again (I did not have my cast on yet) and then I spilled my coffee all over myself but I’m not even mad. Sleeping has put me in a pretty good mood I guess πŸ™ƒ. I will need to go get more coffee though. .



Tuesday, November 14, 2023

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 πŸ˜‚ 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!



Monday, November 13, 2023

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 🐾






Monday, November 6, 2023

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. πŸ˜‚ 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. 


Sunday, October 29, 2023

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  πŸ€·πŸΌ‍♀️ 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 

Thursday, October 19, 2023

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.

Tuesday, October 17, 2023

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?! πŸ˜…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 πŸ˜‰


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 πŸ˜‘ 

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! πŸ˜‚). 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 πŸ˜‚


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 πŸ™ƒ


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!