I’ve been diving into my blog files, the medical files, and making lists.
Sam has a 99% diagnosis of Crohn’s Disease. Oh, the weeks of two different hospital visits, emergency survey, ileostomy bag, and the future concept of weeks, months, and years of potential hardship.
I feel like I’ve been wresting with resentment for a few weeks. I can look back at my past journals and know how I felt.
“I’m hoping she doesn’t have Crohn’s Disease like I do. Or another similar IBD autoimmune problem. But we will figure it out and fix it. Because all I’m hoping for is for her to feel better.”
“Which was the right path? Go slow and follow what the blood tests are saying (nothing wrong? It’s not Crohn’s disease?) or go fast and do all the tests at once?”
“We were convinced through logic to do the Endoscopy first (and alone!) because while the x-ray showed possible inflammation near the ileocecal valve, the rate of false-positive on the x-ray is high. The blood tests were all normal and the latest tests can detected IBD and they were not detected.”
“The new Dr who is performing the procedure walks in. He proceeds to question all of our choices, question her diet, query why we aren’t doing the colonoscopy and endoscopy at the same time, and basically freak me out more. Why aren’t we doing that? Well, our main doctor has a different style and we went with her recommendation. I asked her to do both at the same time. Why didn’t I fight harder for that? But the blood tests were all negative. My Mom doubt is killing me. Was it the right decision? At this point, we feel like he’s going to find nothing.”
I can read through all that and logically know why we made that decision to only do the endoscopy. But I can vividly remember feeling powerless because I couldn’t speak up more assertively. Arguing against logic is hard because I’m usually going off my gut or intuition. And I obviously appreciate logic. But mama-bear feelings are big.
And it wasn’t the doctor who I felt that I was fighting against. It was J. If we told the doctor we wanted to do both (endoscopy and colonoscopy) that we had a strong reason to want to check EVERYTHING while we were in there, that probably would have happened. But… BUT… there were reasons why we didn’t. But while I can’t remember the exact words, I just remember the feelings of 9 years ago being in the room with this incredibly conservative doctor and J being right there, seeming to agree with her – asking all the right questions. And then that new doctor walked in the day of the surgery acting like we were so stupid for not doing both.
Yes, I have Crohn’s Disease and watching her be in pain was so hard. And putting my own diagnosis on her didn’t seem 100% right but it seems so frustrating now that she “most likely” has it.
All the years of me following the SCD diet fanatically, doing incredibly crazy things to try and control how my body reacted… And I can’t count how many times I tried encouraging Sam to follow my diet but I never, ever had the support of J to do it. It was always point after point how this diet wasn’t nutritious, wasn’t healthy, and other points on why we shouldn’t do it for her. And, bless her heart, she wants to please both of us and looks up to both of us and would never want to go against something her Papa didn’t agree with unless I got very vocal and strong about it.
And how could I be strong about it? My diet is incredibly crazy. I’ve had multiple doctors flat out tell me I’m wrong for not doing stronger meds. But my gut told me that I had to do this and that this was right for me. And I did hundreds of hours of reading, research, and experimentation with my own body to prove to myself that I was on the right path for me.
And I tried what I could with her.
“Then I tried gluten free with her for 10 days and she got backed up even worse. A quick trip to the ER, x-rays, some other not so fun stuff that she didn’t appreciate (although it did make her feel better…) resulted in some regularity but still awful stomach pains.”
And man, I tried. I tried what I could control. But it always felt like I had to do it alone. I had to do all the shopping for the specific foods, go down the aisles myself, scour through the Internet for ideas while the other half of the household did what they wanted to do. It always had to be in summer because I wasn’t the one who made the lunches for school in the morning. I would have had to lay everything out, plan it meticulously. Was that completely the truth? No. There are nuances there. But it still felt like I was doing it alone.
And what do I want? An apology? No. That feels meaningless.
But I’m grieving.
Grieving the loss of her health. The loss of healthy years and not feeling well. The sad look in her eyes, the constant underlying pain that we always knew was there but never had blood results or hard-core reasons to push it. We would ask sometimes if she wanted to go back to the doctors but what KID wants to go to the DOCTORS. Once in awhile she did.. but what was it? It was always pain. It was blood tests and weird procedures. Of course she didn’t want to do that.
What would her life have looked like if I had her, and even the whole family on my diet? They never would have been 100% on it. So would it have even worked? No. But more collaboration, or partnership on it… being heard… I was listened to, of course.
Did I feel understood? I guess not. And the fact that I never felt capable of convincing and… getting him on my side!
Maybe validated is a word I’m looking for. I don’t know.
Yes, I was admired for following my diet. Yes, I was congratulated on being so disciplined. But it always felt doubtful. It felt like I had an adversary sitting at the table with me, going line by line down a chart of NO NO NO this won’t work. And I had to sit there and quickly think of all the YES YES YES, we should try it… but I freaking had my own doubts too. And having a huge wall of doubt and negativity thrown at me makes me shut down.
And when all the NO reasons were pointed out, it felt like a… “go ahead and try whatever you want” but I had to go around doing it with what felt like a judgmental eye on my back for every move I made. Every time she had more pain and I was forcing her to try part of my diet and it was on me when it didn’t work out. And it was never going to work out without 100% adherence for weeks on end which was really freaking difficult.
I feel guilty. I gave her this stupid disease. Which yes, that’s not my fault. She came into this life and it’s a beautiful one and she inherited my good and bad genes/traits. Fine. But guilt in that I couldn’t prevent this earlier. I sat in my own making of a miserable puddle of agony because I felt unable to articulately speak up in support; or even drive forward more doctor appointments because I was putting my own disease on her when nothing else proved it out – other than daily, miserable stomach aches. Why would any doctor voluntarily give a child a colonoscopy – yet if both parents agreed to it and wanted it, we could have gotten it done.
I want to grieve the loss of her giving up playing soccer – but like the butterfly effect – she wouldn’t have a beautiful, accomplished career in musical theater and improv, equipping her with amazing life-long skills. So maybe I’m grieving the loss of choice. If we had a diagnosis and a plan 9 years ago, she would have had the choice of what to do. Rather than “you are not capable of running, therefore we found something stationary for you to try”.
I’m grieving the fact she has to go through the same issues that I have had – but even more because it’s aggressive. The concept of horrible pills, infusions, more surgeries, and the potential of even worse… and let’s not even talk about the panic attacks and high anxiety that sneaks in my brain for the possibility of those “even worse” things. Especially when she’s in the middle of surgery. That’s hard to breathe through and get out of my brain. But I do breathe through it.
And I’m inhaling all these words. Guilt. Grief. Powerlessness. Sadness. Resentment.
And I’m trying to breathe them out.
I want to dig through what feelings of resentment look like. Sometimes I can feel it quite strongly. I want to be resentful of things not going perfectly. I want to resent my partner for questioning my choices. I want to resent myself for not being more assertive. But it’s hard to hold on to that resentment sometimes. Because when I do breathe out, I know that I did the best I could with what was around me.
While I imagine being in that doctors office 9 years ago and feeling powerless and upset and doubtful, I also know that I did acknowledge the other data we had. Yes, the bitter taste is still there but it’s not a strong taste. And I wonder how to keep working on it. I am cynical and pragmatic but I want to pull in more acceptance of the past. It’s hard not to dwell on the past though while we go through these next steps of figuring out what exactly she has.
Maybe it’s a reminder that I have the potential to do better in my next steps.
And what does that next step look like? Absolutely in doctor appointments, it’s sitting down and explaining all the options. It’s sitting on the couch next to her bringing up research and talking through options.
She’s an old lady now at 19. I can continue to empower her to take control. Because I do not have control, that is clear enough. And I can teach her what it looks like to advocate for her own health. And be her 2nd, 3rd, or 4th opinion on all the different options she has.
And I know there are things she is learning from this experience. She’s learning to speak up for herself. Quite forcefully in fact. Yesterday she put her foot down in food choices that had been picked up from the store and used her voice very calmly and emphatically to say what was best for her body.
My own disease has made me feel isolated and lonely in the past. My diet is a big part of that. But being on my diet for 12+ years at this point has given me such a level of acceptance and knowledge of my own reality. There is definitely isolated feelings in keeping my own counsel for the food and medication choices I make. Because there is no big discussion on my part, it’s more about me making a choice and informing my family of what I’m doing. I find more acceptance and discussion online in my various communities I’ve joined over the years.
I want to do what I can to not make her feel isolated and lonely. Having an “unseen disease” or invisible illness is challenging. I want to say hard but hard doesn’t even cover it.
It’s amazing how the day-to-day life just keeps on going. Digging into these emotions is hard, and they shift quite a bit. I’m also not very fantastic at even identifying them. I’m going to continue breathing, acknowledging, and smiling through it all. Because I want to keep finding the good moments.
And there are so many good moments to find. And enjoy.
