After everything I already shared about finally having that validating pain management appointment and getting the TAP block, I wanted to give a more current update on where things stand now. I reached back out to my local pain management doctor because the TAP block just has not provided the relief I was hoping for. My left flank still hurts. It still throbs. It still changes how I move, sit, breathe, and function. So the next step now is an MRI of my lumbar spine to make sure nothing there is contributing to this pain. If the MRI does not show anything meaningful, then the next thing he is considering is an erector spinae block. He explained that it could be done as a one-time block, or depending on how things look and what they feel would help most, they may consider placing a continuous catheter so anesthetic can be delivered to the area continually for a period of time.
So here I am… still in the middle of it. Still chasing answers. Still trying to hold onto hope while my body keeps reminding me every single day that this is not over yet.
What I have not said enough out loud is that I feel wrung out. There is not much left in the tank most days, and even ordinary errands can leave me completely used up. A year ago, the thought of getting a transport chair would drift through my mind every now and then, and I would push it away just as quickly. It felt too dramatic. Too final. Too much like admitting something I was not ready to say out loud. Back then it was just an idea that would flash through my mind on the really bad days. Now it feels necessary.
I finally broke down and got one. Even typing that stirs up more emotion than I want it to, because it is not really about the chair. It is about what that chair represents. I have spent so much of my life being the person who just keeps going. I am active. I push. I show up. I figure it out. I do not even know where I am pulling that from most days anymore. What people see as my “normal” often comes from a place I cannot even explain. It used to just feel like that was who I was and how I functioned. Now the spurts are short, and if I look like I am doing well, a lot of the time it is because I am pretending I do not feel like I am dying inside.
That is the part people do not see. They see me go to the wrestling tournament, load the kids up, walk through the store, keep moving, keep trying, and they assume that means I am okay. They do not see what it costs me afterward. They do not see me scanning the room for something to lean against because I cannot keep standing one more minute. They do not see me sitting on a random bucket at Lowe’s because my body was done and I had no choice but to sit, even if I looked ridiculous. They do not see the drive home when I get quiet because talking takes too much energy, or the moment I get home and collapse because I spent everything I had trying to look functional in public.
So yes… I got the transport chair. Not because I am giving up. Not because I want to be pushed around everywhere. Not because I think I need it every second of every day. I got it because there are days when walking through a store feels like running a marathon. Days when getting from the parking lot to the entrance already feels like too much. Days when I still want to be there with my family, still want to go, still want to say yes, but I need another way to make it through without paying for it so brutally afterward.
If I am honest, there is grief in that. There is grief in needing something that once felt unthinkable. There is grief in knowing my body has changed enough that this even has to be a conversation. There is grief in feeling judged by the people closest to me, because when your own family looks at you like maybe you do not really need it, it hits differently. It makes you question yourself for a second, even when you know the truth. My husband questioned me when he saw it. He asked why I got it. He still seems a little off about it, for lack of a better word. And I get it… in his mind, maybe I am still the woman who pushes through everything, the one who always finds a way. But that is exactly the point. I have been pushing through everything. I have been forcing a level of function that might look impressive from the outside while feeling devastating from the inside. At some point, survival starts looking like adaptation. At some point, using a tool is not weakness… it is wisdom.
So I told him I want to keep it in the back of my car for the bad days. For the days when walking feels impossible. For the days when I still want to go but I need some kind of backup plan. For the days when my body has nothing left, but life still keeps moving anyway. Because right now, that is where I am. I am not quitting. I am trying to make life fit inside the limits of a body that is asking more and more from me just to do basic things.
I am thankful wrestling season is over because I am exhausted. This week alone I have four appointments. One is at my main specialty hospital over an hour away, and the other three are here in town. Next week is spring break, and honestly, I feel overwhelmed just thinking about it. Then my mind jumps to summer, because that is what my mind does now… it keeps looking ahead and wondering how I am going to get through it all. I know I will. I always do. I find strength somehow for my girls when there is none left in me, and that strength comes from God because trust me… there are no extra reserves hiding in this body.
I have also been struggling to keep weight on. Pound by pound, it keeps slipping away. Between this flank pain and the stoma and J-tube site pain, it is painful just to be hooked up. Something that is supposed to help sustain me has become another source of pain, and that wears on a person in ways that are hard to explain unless you have lived it. On top of all of that, we just started building our house from the ground up a couple of weeks ago, so I am trying to pack too… and not just toss-things-in-a-box packing. I mean detailed packing. This box is this. It belongs in this room. Label it all so there is no guessing later and unpacking feels a little less overwhelming when the time comes.
So no… this chapter is not over yet. I wish I could say it was. I wish I could tell you I was finally on the other side of this. But I am not. I am still in the thick of it. Still trying to trust God in the middle of a story that has not wrapped up neatly. Still believing there is a reason for this pain. Still believing there is an answer somewhere, even if we have not found it yet.
Thank you to everyone who keeps praying for me, checking on me, and reminding me that I am not carrying this alone. Please keep praying. My journey is far from over. But I am still here… still fighting… still trusting that one day all of these scattered pieces will finally make sense.
#MomWithATube
