Uncategorized - Living With HIBM

The million-dollar question

October 7, 2015November 18, 2017

Exactly a month ago, I was walking over to say goodbye to my younger son and our nanny at an indoor play area and I tripped on a toy and fell. I went down hard and my left hand, the much weaker one, bore the brunt of it. A bunch of people saw and rushed over to me, but per my usual, I played it cool. I told them I was fine. I can’t stand that kind of attention, probably because it’s on top of what is now a new baseline of daily unwanted attention. Luckily, my son didn’t see and I decided to skip the kiss goodbye and instead wave from afar. I needed to get out of there as quickly as possible. I came outside and saw blood leaking out from under my rings on my ring finger and discoloration on my skin. It hurt like hell. I walked to my car, not just feeling the physical pain but the emotional angst of realizing that I probably wasn’t going to be able to go exercise that morning. (Exercise is no longer an optional luxury but rather a means of muscle preservation and survival.) Within minutes, my ring finger started to blow up. Luckily I had the sense to take my rings off right away. I started driving. I didn’t know where to go. All I wanted to do was drive to the gym. But two blocks in, it was getting so bad that I had to pull over at a random Taqueria and ask for a cup of ice.

Damn you, Acceptance

August 8, 2015November 18, 2017

It’s been four years since we moved into our new home. Our first house. We knew it was the perfect fit when we found it. Big enough that we don’t feel like we’re on top of each other, yet small enough for me to not feel stressed walking from one end of it to the other. It also satisfies our joint need to live somewhere that straddles the line between residential and urban. When you hang out in the front yard, you feel the comfort of being on a tree-lined street with houses on all sides. But walk one long block down the street and at your disposal are restaurants, coffee shops and even a mall with a movie theatre.

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Chapter 14: The 9.5 Year Phase

July 31, 2015November 18, 2017

Wouldn’t that be so nice? If there were actually an entire textbook dedicated to HIBM? One with an index where I could look up what to expect a year, two years or 10 years from disease onset? With chapters like, “How Much Exercise is Okay?” Or, “What is the Role Hormones Play in Disease Progression?”

What goes up must come down

June 5, 2015November 18, 2017

I’ve had a good few months. Like, really good. If you’ve hung out with me lately, you’ve probably had the fleeting thought of, “Um, is Jen on stimulants?” As in, I’ve been talking fast and thinking fast- what I jokingly refer to as feeling “high on life.” And though the only stimulant I’ve been using lately is coffee, I have managed to sustain such a happy baseline and keep such a positive outlook. I have whispered things to myself like, “maybe in my lifetime there will be muscle transplants.” Or even, “I’m sure the FDA’s going to approve a treatment any day now.” Basically, I have been how I think people hope that I am- feeling grateful and happy for all I’ve got. Feeling blessed to have an incredible husband, feeling joyful to have two healthy boys and feeling relieved to have a job that so suits my physical limitations. I have been a model happy, brave person.

Where to invest

April 7, 2015November 18, 2017

I haven’t written in a while. Not since January in fact. Lately I’ve been spending some time thinking about why that is.

It’s definitely not for lack of difficult or painful experiences related to living with HIBM. I have come to realize that such experiences are built into my daily life and will continue to be a part of my daily life, for the rest of my life. In some ways, these last few months have been harder than most- I have attended a conference where I met a handful of other HIBM patients, all of whom were wheelchair-bound, except one. I have stepped out into the world now on numerous occasions using my new cane, forcing me to not only confront the fact that I am getting physically weaker, but also forcing me to endure extreme levels of self-consciousness and emotional discomfort. A level of vulnerability I have not experienced until now. And I recently returned from an annual vacation destination where evidence of my progression, as manifested by my difficulty in climbing up the same little hill I’d been able to climb so much more easily in years past, made it extremely challenging to stay calm and not fast forward to the day I won’t be able to climb it at all.

Sanford Burnham Rare Disease Day Symposium speech 2/27/15

March 4, 2015November 18, 2017

I debated posting this most recent speech titled, “Letting Go While Holding On” from the Sanford Burnham Rare Disease Day Symposium in San Diego last Friday. Partially because I did a fair amount of cutting and pasting from past speeches and partially because I actually fumbled a few times (I know, the horror). But I know I must use any opportunity I can to put our message out there.

Riding the Train

January 14, 2015November 18, 2017

Every year for winter break my older son has 3 weeks off from school. And every year I feel a bit annoyed about it. It just feels like an unnecessarily long period of time for winter break. But this year I decided that we would make the most of it. I planned not one, but two vacations. That’s sort of my new thing- planning vacations. A coping strategy I adopted in the last couple of years. It’s not only the experience of being away that is so therapeutic, but also the act of planning and the anticipatory excitement that sets in leading up to the experience. It doesn’t have to be and hasn’t really been anything exotic or extravagant, (my husband’s indulgent 40th birthday weekend in Big Sur an exception). Just something to take us- or me mostly- out of the routine and out of my head.