I am going to post something a little different tonight.
I have always said that one reason I am able to cope with HIBM in the way that I do, is because I am lucky to be surrounded by such a strong support network- family and friends who are there for me in any way I need them to be.
Tomorrow my baby boy will turn one.
Not only will I celebrate his first year of life tomorrow, but I will also celebrate the first anniversary of a dream come true for me. I will be reminded tomorrow, and probably every birthday of his thereafter, of all that is good in the world. I will be reminded of the fact that if I want something badly enough, and I’m willing to be flexible in how I go about getting it, I can and will find a way to make it happen. His birthday will always be proof that if I listen to my heart, if I trust my inner voice, if I believe in myself and not let others sway me, I won’t go wrong.
Read more “Dreams Can Come True”
Today is Rare Disease Day. And despite all of the talking, sharing, writing and public speaking I do about my rare disease, HIBM, it is still hard to believe that I actually have one. Read more “My Holiday”
This week was one of those weeks when I was made acutely aware of the fact that most people in the world-or at least, in my world in West Los Angeles- are not disabled. And as such, most people just don’t get what it’s like to not have their body function as it normally “should.”And therefore, they sometimes simply are not able to put themselves in my shoes or worse, not willing to even learn more about what it may be like to try to walk for a day in my shoes. Because I imagine if they were able to do so, then experiences like the one I had this week wouldn’t be so painful.
That was really hard.
We were invited to my uncle’s house for shabbat dinner tonight. My husband Noah couldn’t go because he had his holiday party for Kaiser at the same time (doctor’s and nurses only). My dad was also going to my uncle’s and together we decided he would come over early so we could drive together, mostly because I was concerned about coming home alone with both boys and getting them both inside safely.
Read more “Reality check”
This last month has been tough. I have literally been sick with one cold after another for what has felt like an eternity. And though, like most people, I’ve never enjoyed being under the weather, ever since being diagnosed with HIBM, being sick or suffering some sort of physical discomfort has taken on a whole new meaning.
In the old days, pre-HIBM, being sick meant feeling temporarily miserable. It was an annoying interruption in my day-to-day routine, but nothing that I ever really spent too muh time worrying about. Sure, it was frustrating not getting to the gym, but I could force myself to enjoy the down time and even the side benefit of not having an appetite and maybe losing a few pounds. Most of all, I could look forward to when I would feel healthy again and get on with my life.