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!