Hey, April Mae here! I thought that since TJ’s down for a while, I’d take over the blog for a bit and talk about what life is like with a chronically ill significant other. Long story short, it has its ups and downs. It’s exhausting, both mentally and physically. It’s also exciting and humbling.

I met TJ shortly after he was diagnosed so unlike many of you, I’ve never seen him “normal”. In a way, it’s kind of nice that I haven’t because that means I don’t have to go through the grieving process that TJ has had to; I don’t have the same expectations that he or an old high school buddy does of his body. But it’s also kind of sad, to not have seen him in his full glory. I do look forward to the day that his myositis enters remission and he/we can have a normal life together! I do grieve though…I grieve for not being able to travel with TJ, have outings together (without having to have an escape plan or a bag full of medical supplies), and for the bad days when he’s in so much pain.

But he’s so darn cute! TJ treats me like every woman deserves to be treated. He’s thoughtful, compassionate, and always tells me how much I’m appreciated. While I continue to hope and pray for his pain to diminish, I also know that even if he were to always be in this state, I would still want to be by his side. Its hard work, but I feel like it’s worth it. We’re definitely experiencing the ‘for better or for worse’ section of wedding vows!

Over the last few days, TJ has had a lot of excess pain due to a combination of normal laparoscopic surgery and being off of his primary myositis drug. Once his body’s had some time to heal, he’ll start the Methotrexate injection again; that should cut back his pain and get him back on the path to remission.

The morning of surgery last week was very stressful. I felt like I was just in a constant state of silent praying! I work in admissions at the local hospital and I meet so many patients that are having an upcoming surgery. You always tell them, ‘I’m praying for a quick recovery for you!’ or whatever, but it doesn’t always seem real. Then when you’re significant other is about to go through surgery, it’s more than real! It hit me a few days before surgery and all the possible complications came flooding back into my mind. But TJ did great! He handled the anesthesia well and there were zero breathing issues throughout and after surgery! When we walked into the recovery room to sit and talk with TJ, I felt this huge weight being pulled from my shoulders.

As we sat there, I read a comic book to him. I’m pretty new to comics and TJ has opened that whole world up to me, so I thought maybe he’d like to hear some of it (even though he doesn’t remember any of it now!). He was finally given a bed upstairs and settled in for a long night. That first night was long; nurses popping in every hour with pain meds and getting TJ comfortable. I think I got like two hours of sleep. Hospitals are exhausting! By Saturday, TJ had started walking out of his room with a walker and later in the day even made it down the hallway a few times. He’s going to make an adorable old man! Haha.

Sunday morning we met with the urology hospitalists again and they informed us TJ might be able to go home that afternoon. That was a shocker! He wasn’t mentally prepared to leave and I think that might have made a difference. It was sooo great being able to take a warm shower and see the puppy again! She must have sensed that TJ wasn’t feeling very good because she never left daddy’s side! I took a photo of them cuddled on the couch.

Since TJ was in so much pain and the pain medications we had gotten at discharge weren’t cutting it, we did go to the emergency room twice just to make sure everything was ok. They wondered about a clot in his lungs due to elevated lab results, but scans showed he was clear. The doctors chalked the pain up to normal surgery pain; the surgery had involved moving organs out of the way to access the kidney and adrenal gland, so there was probably some bruising and tenderness that would take a while to heal. We also met with the pain management doctor on Wednesday because TJ was concerned about taking that many narcotics. Got some more medical advice, instructions for how to take his medications, and told that his body needed time to heal. Hopefully once he can start his injections again he’ll return to baseline where the pain and breathing is more tolerable.

TJ is sleeping now, and while I really want to wake him so we can talk before I go to work, I know his body needs that rest. He’s been spending his time alternating between the bed and the recliner, just taking it easy. We’re working our way through the Back to the Future trilogy (October 21, 2015!) so things are pretty chill here. He uses the walker to get around the house and is getting stronger day by day. He isn’t supposed to lift anything over 10 pounds, so can’t pick up 17 pound Lacy…it’s pretty sad. We appreciate all the support and prayers during this time! It really means a lot to TJ to see so many people rooting for him. That helps his spirits so much! Thanks for reading, and hopefully the next blog won’t have to be so long!

-April