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!