musings from my notebook

Pages from my notebook

There are some things that I don’t even share with you guys. Weird, right? I share pretty much everything with you. So then I thought maybe I should share what I don’t share and turn it into what I do share.

Oy, I’m dizzy from that sentence. Here are some random scribblings from my notebook:

I am not my flesh and bones. They fight themselves. I do not have to fight myself and make it worse.

There is a civil war going on in my body. Humira was winning for a while, but began to fight a losing battle. Time for Enbrel reinforcements! Abraham Lincoln said that a house divided cannot stand. Some days, I hardly can. Like Lincoln, I will not give up the fight.

I am not my illness. It does not define me… But if I have no memory of a me without illness, then who am I?

Why do I get to suffer? Why does it always last? Will I ever get better? What is ‘better’ for me anyway?

It is so hard to be patient – with the situation, medications, myself. I virtually always had this. Why can’t I get used to it? Why can’t I accept it as my life? Why can’t I just be patient instead of a patient?

I do not push myself when I should, and I push too much when I shouldn’t. Work on this.

Forgive yourself. It is not your fault. Illness isn’t caused by anything you did and in no way did you deserve it. You were five. About the only bad thing you did was blame Kelsey for things you did so you wouldn’t get in trouble… Although, that was pretty horrible. Talk to her more.

I fear my condition getting worse. I’m afraid that I will begin to lose the control I do have. I am terrified of needing ‘help’ – assistance devices, help getting dressed, help showering or bathrooming. Definitely most afraid of the last one.

I feel scared about losing my will to fight for myself and having to ‘give in.’ I have come close so many times. What will be the last straw?

I fear being alone because my illness becomes too taxing on myself and others. I’m afraid of dying along and not cared for in a horrible nursing home like my great grandma Kay [who died of complications from MS]. She deserved better, and I deserve better. I don’t ever want to be in a nursing home, no matter what else happens. I miss her so much. I wish I could have gotten to know her as an adult. On the other hand, she’s not hurting anymore, not confined to a go-cart. Jeez, I’m jealous.

My illness does not define me. But it does though. It is why I do what I do. Without it, how would I have turned out? I probably would have ended up playing softball and doing track, going to Harvard like in my dreams, and studying law or medicine. Instead, I’m here. I’m on this cold call floor captioning calls for the deaf and hard of hearing. I live in a great city with good insurance now. I have a wonderful boyfriend and amazing friends I probably never would have met. So… maybe it’s worth the pain?

There is no normal anymore, just different circumstances surrounding what used to be the nuclear family. Why do we try so hard, then, to be normal?
‘Normal’ is a house with a two-car garage and a pool. It is marriage and 2.5 kids and a dog. It is certainly not arthritis, not steroids, not weekly injections to alter my DNA.
The only normal thing about me is that I have all the parts, all the building blocks that make up a woman. Why do I try and want so hard to fit in when I was born to stand out?
Because ‘normal’ – as hard as it might be to achieve – has got to be easier than this… right?

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  1. Just want to say thank-you for this. I have an overlap form of JRA and am currently in a very active pattern of disease activity. Always helpful to read about other's experiences with similar emotions and struggles.

  2. Beautiful post! I admire you for the courage it took to let us into your inner thoughts. I have thought of many also and thank you for putting some things into perspective! It helps to know others out there are going through similar circumstances. I agree about "normal" and about not letting it defining you but confusion about it As it changes who you are so strong! Thank you for sharing!

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