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!  

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 🙃. I will need to go get more coffee though. .

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.