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.