I need a little stream of consciousness half-hour so mentally setting my timer at 11:15.
Okay, 11:17.
The last few days, weeks, have been jam-packed. They’ve been thoughtful, fun, emotional, hard, joyful.
Basically life. And I’m trying to have a little perspective on it.
Taking up 45% of my brain is Sam. Her hair loss is so frightening to me. I want to go back and look at the dates on the calendar and add them all up, and figure out where we lost time. But it doesn’t really matter.
Seeing her… whatever it is… seborrheic dermatitis (what she calls it), psoriasis (what I’m calling it), sebopsoriasis (what AI called it), and let’s see what the Doctor is going to call it…
Seeing that makes my stomach ache. It puts a lump in my throat. I feel nauseous when we talk about it. She is going bald. There are HUGE chunks of hair missing under her massive thick mane. When you lift her hair up, it’s frightening. I’m so scared she’s going to be in a wig. But it’s not even that. Yesterday, I thankfully saw her, and coaxed her to let me take a peek again. There is new growth in those patches.
I have no control. I have persuasiveness. I have caring. I am her mother.
I can not physically pick her up and drag her to the doctor.
During Spring Break when I saw the… almost two inches? missing from behind her ear and I started dialing the doctor and her voice was SO implacable when she said, “NO, I will NOT GO this week.” Her mental health was so bad that she just could not conceptualize the idea of going to the doctor during her week off. Even knowing she was pulling scabs, flakes, whatever off her scalp and chunks of hair were coming along with it.
That was… 4 weeks ago? And we’ve been having these problems for months? Whooshhhh.
And of course, the day she left, I got a little crazy saying I needed her to concentrate on her health and she was so agreeable saying she’d call the next day! Ha. I was like, that was an easy conversation.
Did she call? No. And of course, it was a week later when I asked her. And another few days after that when I asked again. And then she’s calling me saying she’s depressed, and not sleeping, and sleeping too much, and missing meetings, and going bald, and I just burst into tears after hang up the phone.
I’m so thankful that we have an appt for her on Tuesday with Selise and Vince. Thank goodness my Mom is friends with them. So THEY called her but it was at the point where I was going to call her, and then 3-way call the doctor. Because she wouldn’t do it but I don’t know her calendar. But why does it have to get to this point? I feel like I have to have a written directive for people to follow instructions.
She’s not capable of it right now. I don’t fault her. Having to go through a GI, Derm, GP, and have these things happening to her while doing all her collage stuff is overwhelming. There is paralysis in taking the next step, gosh, I understand that so well.
But I still feel like I have to quarterback it all. I have to push, and prod, and remind, and dictate.
We’ve had at least 3 sessions with her other Derm. We’ve had the biopsy, where it didn’t say psoriasis, yet we had all the other skin issues up and down her body, where she said, yes it did look like psoriasis. But if we could keep her on the Remicade and manage all these skin issues, then that would be the best case.
But going bald is not a best case. And pointing out to Sam that there is a difference between washing her hair with the medicated shampoo and washing it, and leaving it IN for 5 minutes. And wonder of wonder, the shampoo is working a bit better than it was 4 months ago. But I had to point out, what about leaving it in for 10 minutes? What would happen then? What are other things we can try? No gluten. No sugar. Changing detergents. Rawrrrr.
It’s like we need a concierge doctor to sit and hold her hand. Because I can’t do it all from 96 miles away. And jeeesus would it be easier if she were a toddler and I could just CONTROL it.
I can’t control any of it. And I have to have some acceptance that she is older and has to have the autonomy to figure out and do it herself. Some of it. I have to keep zig-zagging.
But some of it I can do. But I can’t be there when I’m traveling next week. J is going and that’s good. I trust him, he asks better questions. But AND I feel like I’m having to spell it out for J of what needs to happen. We NEED to have her ask these important questions to her GI, after the derm appt. We I don’t want her to have her next infusion in two weeks if we should be switching biologics. SOMEONE has to ask the Dr that. And Sam is probably not going to write the email herself. If J is not going to do it, then I will do it. But the fact that I have to spell this all out is frustrating. Why do I only have this sense of urgency? I don’t even know if he’s seen her bald spots. If I hear that after Tuesday he got a good look at them and suddenly got urgency, I’m going to scream.
Sigh.
Another 30% of my brain is sitting on the fact that $1,800 was the quote for my MRI.
I had a thought that I didn’t need to get it if I was just going to go on a biologic anyway.
That’s a lot of money. Can I afford it? Yes, I can. Can I easily afford it? Also yes.
Did I just not want to get it anyway because I didn’t want to hit that PAY button? Basically yes.
When I asked at dinner on Friday, my extended family, every single person was like, yes get it. haha
Would I get it for Sam? Yes, I would.
UGH. Fine. I’m going to pay for it.
Maybe tomorrow. Our deductible is so annoying. Seriously, that is a lot of money.
That’s a lot of therapy appointments.
My therapist had a question for me… Who am I if I’m not perfectly controlling my health?
I had wanted to sit with her in my angst of going on this new medication. Or potentially. Although I think I have convinced myself that I just need to do it.
If I can control what I put into my body, I am a disciplined and strong. Although I don’t think I’m a strong person. But discipline is one of my core values.
What qualities make someone disciplined and strong? Are those two things the same?
I sort of stumbled through it a bit. I was describing systems, and then results. Which wasn’t really the question. I can be disciplined… because I have my systems. It is not about how strong you are. I don’t feel like I’m strong. Or am I strong but I don’t feel like I have strong willpower.
I am disciplined because I put my workout clothes on my floor every night and pick them up, and take them downstairs with me when I get up. I am disciplined when I put on my stretch band and do my stretches while I brush my teeth. When I do my French during cardio. When I make my homemade yogurt every week.
Disciplined is the ability to stick to a system and show results from it. It’s being true to what you say.
We talked about how it’s consistency and persistence, those would be actual qualities, maybe.
But I don’t feel strong when I decide to not eat the chocolate that a work friend brought to me from Japan. I set it aside, and then 15 minutes later, I turn around and pop it into my mouth.
That doesn’t feel strong.
Or when I’m telling myself to not look at something, NOT to do that thing, and then I walk right over to my computer, open a browser, and off I go.
Why did I do that? That doesn’t feel strong.
Discipline and strength.
I apply a lot of morality to these words.
I do feel “better than” when I can stick to my diet and feel good from it.
Look how disciplined I am… I feel like if I can stick to this diet, this has shown me and everyone else… that I can get shit done. I feel like I’m being “better” at it, therefore I’m “safer”.
Nasty feeling. A superior feeling.
I feel good as a result of sticking to my diet, so I feel safe because I’m disciplined. If health is my “moral” reward, then getting sicker or having to take medication, feels like a moral failure. It’s a shield from feeling vulnerable but where does it leave me when I need to acknowledge that taking additional medication does not mean I’m failing.
Taking harder meds means that I am balancing my needs and being flexible. My diet is a system I’ve optimized. I can be flexible with it and not feel that I’m “cheating”. It is helping me AND medication can also help me further.
I can have compassion for myself.
Can I believe it when I say it?
I do feel grateful I get to have these weeks/months to process this before going on it. It is a double-edge sword though, I always feel better being certain and going with a decision, then sitting in the uncertainty.
That was a hilarious discussion with my therapist. “What do I do when I’m uncertain?” I research. I try to be certain. I withdraw. I don’t want to feel stupid or be wrong. My brain tries to solve uncertainty with control.
But I KNOW that whatever happens, my history has shown I can/will pivot and figure out a way. I don’t feel that my decisions were bad because once I move forward, I take a deep breath and just do it, and find another way. But man, the uncertainty sucks.
Where can I find acceptance? Radical acceptance?
I feel like I also use the concept of going on these meds and potentially having adverse reactions to them down the line is scary but this isn’t a medication that I’m stuck on. I can stop it. If I do stop it, I don’t think I can go back on from what I understand but I can go on something else.
I can have Intentional Flexibility. Then it goes back to the question of who am I if I’m not perfectly controlling my health? I am resourceful. I am curious. I am kind. I still get shit done. I am helpful.
I am all those things and more.
What would a flexible but still intentional approach look like, even with a medication?
Such a good question. Something I need to figure out.
After I get my silly MRI.
12:14 and I didn’t even cover the craziness of yesterday and how I had set-backs AND took a deep breath and moved forward, was present, and enjoyed the day.
That’s another blog, I guess.
