Thursday, December 24, 2009

Being Social

The last few weeks have been very social for me. Typically I get my human interaction from students, their families, and my family (including Rob here). I don't go out searching for excitement or gatherings. I find them exhausting.

While in Oklahoma/Texas for my Grandfather's funeral, I was able to do something really nice. I met up with an old college friend in Dallas. I actually met her 20 years ago when I accompanied her for a concerto competition at a summer music festival. (I got a free ride to the festival for helping with orchestral music library duties and accompanying students in the competition).

Jean was still in high school at the time. I ended up attending the same college for graduate school while she was still in undergrad. We became good friends and have stayed good friends. The type of relationship where no matter how long it has been since we've talked directly or seen each other, we really have a nice time. There have been fleeting thoughts that if I were to need a Matron of Honor, Jean just might be the person I ask. She is definitely my oldest friend who has kept in touch over the years. After earning two degrees in music and spending years working in the newspaper industry, Jean is now a certified financial planner running a successful business. Go Jean!!

Then after I wrote about the snow here in Northern Virginia, a high school classmate realized that I live less than 3 miles from her. (We are both on Facebook.) With the craziness of canceled plane flights, she got stuck here for Christmas. We met for lunch on Tuesday, a lunch which lasted longer than 3 hours. Wow, it was good to see someone from "back home" who has lived away from Oklahoma as long as I have. She was in band as was I, but I was so terribly shy at the time that I only really knew a small circle of friends.

Since reconnecting with high school classmates on Facebook, I have received such wonderful support and frequent kind words. For those of you who might read this (because I know several do keep up with the blog occasionally), thank you very much! You knew me before health issues were ever an issue. You knew me back when....

Then Tuesday night a new friend on Facebook, who also has MS and lives in the area, messaged me. When I got the message, I immediately called her and we spoke for over an hour, then planned to meet for lunch yesterday. We had a great time! Also since we attend the same neurology clinic, we had some sharing to do about folks there.

I told her that I recently learned our previous MS nurse (I love nurse Carol) did not end up moving to California as we first thought. Someone who works at HealthCentral whose wife has MS told me that she still attends their same church in Vienna, VA. Kipperly and I joked about stalking nurse Carol for continued MS support (she was THAT good!!) Of course, just kidding about the stalking......I think. ;)

Although Kipperly has been diagnosed with MS much longer than I, it is only in the past year that MS has really taken a turn for her with at least three significant and distinct relapses requiring steroids and disability from work. It was good for me to see face-to-face the frustration and fear which I so often read in blogs and questions online. Fears which I have felt many times myself.

I am realizing that there may just be things I have learned to live with (and become less anxious about) which others do not experience randomly from week to week, or day to day. Maybe I've forgotten how frustrating and humiliating it was the first time I completely lost control over my bladder in public. Actually the VERY FIRST time this happened was in college. I had walked across campus to my dorm. Somewhere along the way, I realized that a bathroom would be a good thing and I tried to make it. When I knew that I wasn't going to make it, I sat on a brick wall outside of my dorm building and let loose. I was humiliated having to walk inside in soaked jeans to get on the elevator to my floor. I immediately took a shower to try to wash off the stench, but the embarrassment was harder to wash away.

Somewhere also during this past weekend, I communicated with someone from an MS forum. She was denied assistance from NORD for her Copaxone. I told her part of my NORD story. We ended up speaking on the phone Monday regarding ideas for improving her financial application, trying to make it more clear how her need is indeed justified.

This person is very newly diagnosed. After telling me a few of her symptoms and asking a few questions, she asked me what my symptoms have been. I was honest and summarized the highlights, big and little, while just talking matter of fact. No fearmongering, just straightforward talk. Of course I emphasized that not everybody has the same symptoms and certainly not to the same degree.

Maybe I'm a bit too straightforward at this point. I may have scared her unintentionally. (I'm so sorry H. if I did.) I don't want to frighten people, especially with the knowledge I've gained from others who share their own stories. But I also don't want to hide the realities. I hope that others can see that even though I have permanent numbness in different parts of my body, residual visual disturbances which do bother me, an eye which tends to bounce now when I'm tired (or not), trouble with balance sometimes and an awkward gait especially when I'm overheated and fatigued, weakness in some muscles, mild spasticity, a right hand which tremors ever so slightly very infrequently, nerve pain, etc., etc...... I hope that they see that it is OKAY. Life goes on!!

Tonight I'm headed over to Rob's mother's house for their traditional Christmas Eve dinner. My Mom is coming and we'll celebrate Christmas together. On Sunday, Rob and I will meet up with some of his friends (who he's known since high school) coming through town. Tis the season to be busy and social.

If I'm not around much, you'll know that I'm probably meeting with somebody whether on the phone or in real life. Having social support is such an important thing, especially during the holiday season which can be stressful for many.

Merry Christmas to all!


  1. Being Social is great and you are right...even with all the little nagging goes on! :)

    Hope you had a fabulous Christmas Lisa!