My 15 year old had her who knows what number deroofing yesterday, another in the armpit. Usually I don’t get emotional, I try to stay strong for her. I know her mind instantly goes to that place where she doesn’t want to make me upset and I don’t want to add to the trauma already occurring.
It took forever to get her numb, the doc kept trying, but she wasn’t numb yet and the tears started flowing. They gave us an ice pack and 10 minutes to let what felt like 20 needles of lidocaine she had in her armpit sit. They told her she didn’t have to do this and we could quit. She said she didn’t want to have come this far with all of the numbing and not have the abscesses that have been bothering her while wearing her bra daily be removed, she had already endured the worst pain with the lidocaine in inflamed, angry and extremely sensitive skin.
She’s so strong, she sits there, holding my hand, taking it like a champ, crying silently. She knows that she has to endure some incredible pain, then on to healing, and hopefully they heal and are a thing of the past…at least those ones. This is medical trauma; this disease causes immense trauma that no one can understand. We willingly and knowingly put ourselves in these positions on a regular basis just to try and make a better life for ourselves. We do things to our bodies that people would just shake their heads at, that people don’t understand. We knowingly cause pain and scarring to try and keep this from happening again, at least in that same spot. We do this knowing there are no guarantees of success, and yet here we are again, fingers crossed that this time it will work.
What I know is that a bill will be coming in the mail shortly after for this procedure to the tune of $25,000 total, with my potion being at least $2,500 and I know that they will just pile up. I know that we will be back for many more and that the bills will just keep coming. I know that on top of her HS, I suffer myself and am still working on the bills from my surgery that helped me so much from years ago, and I know that there will be no end in sight. As a parent, having to even factor this into the equation is sickening, disturbing, sad, and truly heartbreaking. I want to be able to do whatever my daughter needs to make her quality of life better without a second thought.
We sit there with the ice pack on, joking about the small box of tissue they gave us that they will most likely have charged us $40 for so she better use it all, picking it apart, how it’s 2-ply but so rough and she jokes that I used 3 of them. In my defense that was before we brought up how much they’d show up on the bill for. She’s sure to remind me that she only used 1 tissue. She mentions the box that she has in her car from the last time and I feel guilt rise in my throat. We’ve been here and done this before, countless times and yet she asks to come back for more.
They come back in, she’s partially numb and they start on the deroofing procedure. I’m openly emotional at this point and tell them that dealing with this on the daily is one thing, but this fucking sucks so much. They give her more lidocaine in the center area where she is still not numb and are finally able to make that numb. It’s now after 5pm, everyone has gone home, we’re in the room with the HS Specialist and the Med Student accompanying her on the search for tunnels in her armpit. She had 2 single abscesses removed with a punch deroofing and the 3 that were in the middle were tunneled together. They were each taken by punch deroofing and then the tunnel was cut open revealing the biofilm that our body is so busy making.
Now comes the healing, physically, mentally and emotionally. I’m not sure what’s more difficult, watching her go through this, or watching all of the different kinds of healing that are happening. There are so many stages of grief that recur every time this happens. Physically, there are so many things to take into account, the tape placement, are the bandages going to stick, when can we use different products to advance healing, how to keep changing the way the bandages are situated to keep the tape from ripping her sensitive skin, making sure it’s not too bulky, but there is enough gauze there, it’s like origami to figure out how to get it just right. Having to think about how to carry your backpack at school, not wanting to sit out for PE, but having to because you have open wounds in your armpit, how are you going to wear a bra, so many things that you don’t take into account and that a person without HS wouldn’t give a second thought to.
Mentally and emotionally she’s tired; I’m tired. There is a loss, a mourning that happens each time, another trauma; one we’ve knowingly and willingly chosen. I wish it got easier, but I don't know that it does. I know for me it has gotten easier as time has gone on, less traumatic, more empowering, but I have age and experience on my side, she doesn’t. I wish i could fast forward her to where I am now, to help her see that she is fucking amazing and that she is who she is in part because of her HS, the good, the bad and the ugly.
The trauma we face is real, it happens for us often, more often than any of us speak about. This doesn’t just include procedures, this includes every time we go to the OB/GYN for an annual exam and apologize to them for what they’re going to see, every time we unexpectedly bleed or drain in public, or even in our own homes in front of other people, any time that someone may smell our odor, any time we may walk funny because of a groin abscess, any time we have to go braless, any time we meet someone new and approach the topic of what they can expect to see, any time we have to explain our situation to someone, any time we feel overtaken by the mental, physical and emotional toll this disease takes on us. The trauma is relentless. How do we process this and accept it? How do we keep it from sneaking back up on us at the most inopportune times? How do we squash it and let the resilience rise to the top. Does it ever go away?
Have I just pushed my trauma down and tried to bury it with this story of “I am who I am because of this disease”? That I’ve overcome it? It feels like it’s been lying in wait all this time. I want to teach my kids to do better than I did, to deal with it head on, but how do I teach someone to do what I don’t even know if I did myself? How can I help or teach someone when I don’t know how to do this myself?
,..now where is that damn $40 box of kleenex
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