The First Post - About Me

It all has to start somewhere. I've been thinking of starting a blog for some time. I've been pondering it, but just not sure where to start. I also have 3 very young children (as in VERY young - all age three and under!) so my time is often limited.

Like many things in life, sometimes you just have to jump in and go for it. So here I am!

To start off, I should probably talk a little about myself so you know where I'm coming from. My name is Sarah and I'm 27 years old. I live in Wisconsin with my husband, Michael, and our three daughters: Kierra, almost 4; Alessandra (Ali), 2 and a half; and Angelina (Angie or Lina), 8 months old.

As for the part that makes me unlike many other mothers my age - I have an unknown neuromuscular condition. I've had symptoms since about age 10 or so and got slowly worse. Now I have seemed to plateau and do not seem to be getting worse as quickly. My main symptoms are muscle weakness, nerve pain, and numbness and tingling. Oh and the lovely fatigue - can't forget that! I wear leg braces (AFOs) that go up to just below my knees. This helps bring my toes up so I don't trip as easily. They do work as I don't trip very often at all anymore. Yet I still cannot walk long distances, stand for too long, go up stairs without a very sturdy railing, and I lose my balance easily. I can get injured pretty badly when I fall, so I need to try to lessen the chances of that.

There's so much more to my disability, but it is very difficult to sum it all up quickly. How do you sum up 15+ years of doctor visits, hopes and dreams, dead ends, anger, loneliness, betrayal, and eventually a certain level of acceptance? To make a long story very, very short: I have been to Mayo Clinic and they told me they do not know what I have, but it does closely resemble Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), but could also be genetic even though none of my famly members have ever shown any symptoms. How's that for a huge jumble of words that basically means: "We don't know what you have, why it's happening, what to do about it, or what will happen in the future. So good luck!" Makes me wish that there was an actual Dr. House like the TV show. Sigh...


Anyways, that's my health condition in a nutshell. I will probably explain some things more in depth in future posts, but I probably won't dwell on it overly much. While it is my condition and what I have to deal with daily, it's not the important part of my daily life. It's just a part of me. I'm a mother first. ;)