Keep moving forward!

    It has been a busy month but we are still kickin’! 

    I know my last post was pretty negative which is really not the mindset that I usually have and definitely not the one I want to have. I have been on the struggle bus for a long time. It feels like my life has been somewhat frozen since September 3rd and it has been getting the best of me - I’m working on it! That is actually one of the reasons I haven’t updated in a while. I was dealing with a severe lack of sleep again due to pain and the combination of the two was keeping me in a really dark place. 

   It finally feels like we have taken some small steps forward so I wanted to share that and give an update as well. I had another seizure a few weeks ago - it wasn’t a big surprise because I had some signs leading up to it but still disappointing and frustrating. Within a few days of my seizure I gave in and called my dr to schedule an appointment to try to figure out ways to help me sleep more. They got me in pretty quickly and we have a plan going forward to help with my pain and inflammation. Since that appointment my sleep has increased some and with that came the first glimmer of hope that I’ve had in a while. Some nights I get as much as 5-6 hours and then I have nights like last night that I get maybe an hour and that’s it. I was at regular 1-2 hours per night though so this is a big improvement. We will take it and are very thankful. 

     I have been making a list of small goals I’d like to accomplish each day and that has been helping me a lot. I do have days that I am too sick to get it all done but most of the time I have been able to! It isn’t anything that would have impressed my former self but I’ve had to change my perspective over these past 7 months and I know how important these daily wins are so I plan to continue to do this. I have been encouraging Skye to do the same also.    

    We have had a lot of important appointments recently with more on the way - I had my appointment last night to get hooked up for my 72 hour EEG that was ordered by my Neurologist all the way back in September. So grateful to finally get this done! I look hilarious and according to my family I look like a pilot (Alex), Spider-Man (Aidan), Thanos (Colin), and Turboman from the Christmas movie (Skye). Today I get to go to the children’s hospital with it on so if you see me out today with a beanie on my head even though its 85 degrees just mind your business. Have to cover this thing up at least a little. 😂 Skye wants me there though so I’ll go for her. 

    Speaking of Skye, she’s really been through it lately too. Her health has continued to decline and we are hoping to find something to help her soon. It’s so hard to see your kids go through something like this and not be able to fix it. She has constant pain, has drastically fallen off of the growth chart over the past year and she wants to sleep all of the time so she had some labs done for these things and today she will have her third MRI in a week. When all of this started she would cry at the thought of any blood work or IV’s and at this point she just watches them while they do it. No more tears! I am proud of her but also sad that it has gotten to this point that shes so used to it. Praying and hoping for some answers!! We see her Rheumatologist on Friday. 

   

     That’s all I’ve got for now. I’m in a Lupus flare and it is hard to type. Here are some pictures of the past month and a half. Trying to focus on the bright spots because they are there if we look for them 😉

A friend bought Skye these adorable boots and that inspired her to get dressed and fix her hair and stuff. Made me so happy! We also celebrated Maia’s birthday at the end of February. 

Some cousin love that we were able to enjoy with some perfect Spring weather

Aidan is buying the S2000 back from my parents and he’s so excited. We first bought that car when he was only 1 year old so it has a lot of sentimental value to us. I had to do comparison pictures of course.

I love that Alex involves the boys in doing maintenance on the cars and stuff. His dad taught him and now he gets to pass that on to our kids!

Dog park day and a sunset picture I took on one of the walks Skye and I took together

No one gets to see what this thing looks like underneath the beanie besides family and 2 other people. I’m glad it’s added some laughter to the house I suppose

This one is a big deal to me. I was able to close my rings on my watch almost every day in March! Closing my rings used to be a given but is no longer something I will take for granted. The 5th was the day of my seizure so you can kind of see the downfall leading up to that and the 31st (Easter Sunday) I felt absolutely awful and really couldn’t function at all. 

    

No rainbows or butterflies…

If you want to read only positive posts then this isn’t the one for you and that’s ok! Just keeping it real. Right now our life is not full of rainbows and butterflies. More like rain clouds and vultures or something, I don’t know. Just don’t say I didn’t warn you! Several people have told me that they appreciate the updates on here but more than anything I am posting for myself. It helps me to write out and process my thoughts. 

My last update was mid-January but it feels like so much has happened since then. January has got to be the longest month of the year, am I right?! I spent most of the month in a flare, spent about half of the month on steroids, caught the Flu which was absolutely horrible and had some other really big things happen in our lives. Not sure why everything hits at once but boy oh boy, it sure does. 

 I had my 12 week post op appointment for my back and that went well. Everything is still in place and healing on schedule from what they can see on the x-ray. We also have a plan going forward due to my reaction to the metal that will ultimately result in me needing another surgery to remove as much hardware as they can. This can not be done until at least 12 months post-op to allow the spinal fusion to be complete though so for now we focus on managing my symptoms as much as we can until then. In November I will have a CT Scan and if the fusion is complete we will schedule surgery. If it is not ready yet then we will recheck about 3 months after that. 

Colin hurt his knee a few weeks ago. It collapsed while he was running and he's having a bit of a hard time getting around now and experiencing a lot of pain. We went to see a pediatric orthopedic dr and had some x-rays taken and they ordered an MRI which will be done next Tuesday. For now he is in a brace because without it his knee gives out on him often. The good news? Well, as usual we have met our individual AND family insurance deductible for the year already. It's fine. Everything is fine. 🔥

Alex had to go back to work on site full time for the first time in almost 4 years. We are SO thankful for the time he had to work at home - especially in the last several months since I became so sick but it has been a tough transition not having him here. It’s not like I needed him to do much for me or anything like that but just the fact that I knew he was here watching over me was comforting. I had been with him literally every single day since my seizures started on September 3rd. He’s my rock and my best friend and I miss him! This is the least of the things that happened in January and I know I’ll adjust but it was just kind of the cherry on top so to speak. 

We had a tragedy in our family in January as well but it isn't my news to share so I won't be posting that but it has just been a really heavy month. A lot of tears and no understanding of why such bad things happen sometimes. I am sure I have cried more in the past two weeks than I have in the past year. I am so tired of crying! 

I am thankful for the friends that have reached in when I haven't been able to reach out. I know that I am not fun to be around right now and I'll be the first to admit it - just call me Eeyore 🙃 I find myself avoiding any social situations because of this and because I just haven't been feeling well at all but through all of this I have realized even more just how amazing my friends are! 

We do have some positives to note as well so I don't want to skip over those even though they are somewhat "in progress". Skye's Rheumatologist and ENT had ordered some tests and procedures but I've been calling and playing phone tag with the various offices for months trying to get them scheduled. I was finally able to get a couple of them on the calendar (in April but better than nothing!). She is not doing well right now either so this is a big deal! Hoping to be able to help her in some way, somehow. I don't like seeing my girl suffer so much. Also, my dr started me on a new medication that is supposed calm down my immune response. Right now my body is in attack mode against this metal causing the continuous Lupus flare that I am in. We are hoping that will improve things some and at least get me to a place where I can be a functioning human. Right now I am not. We really won't know for a few months but hoping it helps. 

We also got to celebrate Colin’s birthday, both of my nieces’ birthdays and my sister’s birthday in January! Feeling extra thankful for family this past year! 😊

She seriously does not know how big she is. Who needs a weighted blanket?!? Not us!

 That's the update for now pretty much. Next week is really busy so I'm sure it'll be a bit before I post again and I didn't want to get too behind. As always, prayers, good thoughts, good vibes, and good jokes are appreciated.

Holiday updates

 I haven’t made a post in a while because the holidays were busy and I really haven’t been in a very good headspace but I have waited long enough so here goes nothing! December is always a really busy month in our family with birthdays and Christmas and stuff but all of that went well and we had some good family time.  

My lap Dane!

Let’s see, here are some of the positives: 

1. Not only did I completely ditch using my walker in December but about halfway through the month I was also able to transition from my aircast to a soft brace for my sprained ankle. 

2. I went to the gym a few times the week before Christmas and I was able to spend some time on the Assault bike. The bike is better for me than walking because I am still dealing with drop foot and I trip on my own foot a lot. I struggle with limiting myself though and realized after the 3rd day of riding the bike in a row that I probably need to pace myself a bit better. This is my biggest struggle because my brain remembers what I used to be able to do in the gym but my body just isn’t ready yet. 2023 was the year of PATIENCE! 

3. I went the whole month of December without any seizures!

4. I am able to move around better with less assistance and am able to do more things around the house. I even was able to go on an easy hike in North Carolina without any falls!

5. We were able to go on a mountain vacation with a lot of my family the week after Christmas and that was a lot of fun. Colin and Skye actually played really well together all week and their favorite thing was climbing on rocks and hiking. We have talked about taking a trip like this for years and this is the first time we actually did it. Best Christmas gift from my parents ever for sure! 

Top of Chimney Rock

Those are the really big things and as I write it out I am very thankful but I am also really struggling. It may seem strange that I am experiencing both feelings simultaneously but nevertheless, I am. As I learned after my first wrist surgery back in 2021, my body does not react well to having metal hardware which is why I had it removed from my wrist but there was no choice in the matter. My back had to be fixed and that required more hardware. That being said, I have been in a pretty continuous Lupus flare since about two weeks after surgery. This means almost daily fevers, all over body pain/joint pain, chills, exhaustion, a frequently flushed face and just feeling unwell in general. Steroids do help the flares but it is only temporary so I limit those as much as possible. I am working to control my diet and eat as clean as possible since that is one area I can control and it does make a difference. As I am able to workout more I will definitely work to increase that as well. I just need to remember to pace myself! 

I try really hard to look on the bright side and most days I can but over time it gets really exhausting. I’m tired! Physically, mentally, all of it. I’m not a quitter though and I’m not going to start now so I’ll keep on pushing through it, even if it is painfully slow. It does help to look back and see how far I have come though and my back is so much better than it was before surgery. 

This is what my Lupus flare fevers typically look like

Lupus “Butterfly rash” - thankfully it isn’t like this all the time but it usually gets worse when in a flare. 

Charli always seems to know when Skye and I are not feeling well. The BEST pup!

Skye is in a flare right now too so Charli shared the love with her yesterday

I was really looking forward to putting last year behind me and starting 2024 fresh but unfortunately my year started with another seizure on 1/1/24. I really thought I was in the clear because I made it exactly 2 months without having one. Talk about a huge let down!! It did help provide some answers about why I am likely having them though which is a good thing and we are doing everything we can to hopefully prevent more from happening.

Those are my updates for now. I start PT for my back and drop foot soon so I am looking forward to that since it is progress forward!

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! 

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!