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.
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| 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!
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| 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.
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| This is what my Lupus flare fevers typically look like |
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| Lupus “Butterfly rash” - thankfully it isn’t like this all the time but it usually gets worse when in a flare. |
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| Charli always seems to know when Skye and I are not feeling well. The BEST pup! |
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| 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!
