MS Strength

Within every Multiple Sclerosis Patient there Lies an Indomitable Strength.

Archive for the ‘My Personal MS Story’ Category

Stepping Up

Posted by Jen On July - 16 - 2010

A few things are changing around here. For the past couple of years I’ve been (somewhat) satisfied with being a safe haus frau, writing from home, and having the occasional jaunt out during the week to volunteer or visit with family members/friends. Working from home has been a blessing in terms of keeping me employed part-time (I also receive Social Security benefits, which took 2 1/2 years of scanty employment, complete hardship, and tenacious interactions with the Social Security Administration to receive.) But now I need more. I need an outside, part-time career. For my own sanity.

I’m starting graduate school at the end of August. I’ll be doing an online distance ed Master’s of Social Work— MSW— program and it’ll take between 3 – 4 years, with clinical rotations, to complete. The clinical rotations will be separate from the classes, and they’ll require about 18 hours of in-person work a week. As the turtle, I’ll be very slowly and steadily taking this program one course at a time for 8-week increments pretty much year-round (I WILL get a little time off between 16-week semesters!)

At the same time, I am now making and will continue to make some needed changes within myself to be more than I currently am. Some important tweakings. ;) How can I be of service to anyone if I have unaddressed issues of my own? So a more cohesive Jen. And two of the initial areas I’ll be addressing will be my inner and outer strengths. I’ve found a local yoga studio, the Center for Health and Healing, which will have me work the front desk on Thursdays from 9 – 3pm in exchange for unlimited free yoga classes and 1/2 price massages. It’s finally time to get out and do some yoga! I’m pretty excited and I think the 6-hour commitment each week will help me slowly build my outside work endurance (I’ve been maintaining about 8 hours of weekly sedentary volunteer work thus far.)

I believe in my mind, my heart, and in my soul that I can maintain about 12 – 20 hours of mostly sedentary work each week. No more long hours on my feet as an ultrasound tech. But this is fine with me, as I believe in my mind, my heart, and in my soul that I can be of service as a medical social worker, and now’s the time to begin this new chapter in my life.

Yoga job starts bright and early next Thursday morning… :)

I Met Joan and Lisa and Sonia— What Fun!

Posted by Jen On April - 2 - 2010

What a great day yesterday! I ventured down to Delaware to meet Joan (from A Short in the Cord and Joan’s MS Chat Room), Lisa (from Brass and Ivory, MS Central, and The Carnival of MS Bloggers), and Sonia (one of Joan’s local MS buddies and a fellow chatter.)

Woo Hoo!!…… It was awesome to meet fellow MS writers and chatters in person, after nearly two years of online interactions. And we found that we had TONS to TALK ABOUT in person. Joan was a little concerned that we might have nothing to say when actually brought together in one room, but not so. We had lots of laughs, we shared more information, we learned more deeply about one another’s lives, and we also talked about NON-MS stuff!

An MS issue we did discuss: what did we feel were our greatest multiple sclerosis symptoms and did they greatly affect us? Joan and Sonia mentioned their stopped-in-their-tracks fatigue which altered both of their career paths. I mentioned my own embarrassing and VERY annoying bladder and bowel urgencies, and Lisa explained her right leg weakness and the compounding rheumatoid arthritis hand symptoms (although it was good to hear that her current RA med is helping BOTH of her conditions.)

We enjoyed food and some wine and we gazed at Joan’s adorable backyard with bird houses, feeders, and many visitors. Joan’s home actually backs to a water runoff area that has filled in since she moved there, giving her a serene small pond that she shares with other neighbors. SO COOL!…..We even met Joan’s husband Tedd and I got some better directions home, since I got thrown off course with MapQuest’s ambiguous information (SIGH…)

All in all: what a GREAT TIME!…. Thanks for such a splendid day, ladies, and I can’t wait to do it again soon. We hope to continue and make this a tradition, involving more MS ladies who’d like to gather and celebrate good food and good friendships and LIFE. We all ROCK n’ ROLL!……

Bringing My MS Story Up-to-Date

Posted by Jen On November - 7 - 2009

I don’t have the desire to talk about MS today: I imagine a lot of patients go through such times when the disease is not in the foreground. I think people DO go through phases where the disease is raging and it is all-encompassing. Writing about it then becomes a source of release. Or it’s a new diagnosis and everything is a new discovery. Or patients have a more progressive variety and there are challenges to overcome and milestones to mark. Right now I fit into none of these latter categories. However, I have noticed that I never brought my personal MS story up to the present date, and so I’ll try to get up to speed and continue where I left off. Looks like about a year ago….

I pretty much found the attack of summer 2008 to be less severe than the attack of summer 2006. Thankfully. For some reason, I’ve only had full-blown, acute attacks since starting my disease-modifying med in 2005. I was on it regularly by 2006— after problems with the flu-like side-effects—and I have had a ceasing of small, vague attacks. The larger attacks have also become what I would call “watered down.” Thankfully. My MS is currently manageable and the attacks have become fewer with more time in between. Thankfully.

In the summer of 2008, I won my disability case. I have since picked myself back up and I’ve been volunteering at one of our county library branches for several hours a week, doing database entry for the system’s volunteer program and also processing used kids’ books for a literacy program with the county’s foster care program. This venture in particular makes my heart sing! I’ve also continued to be a library English conversation group leader for foreign-born patrons interested in bettering their conversation skills. I had to stop this for a while back in the spring of 2008, when I began to bite off more than I could chew. Thankfully I got back to it and it’s now been running since 2006. Love it and I love the patrons who remind me all the time how lucky we are to live in the U.S. (no matter the politics du jour.)

I’m now anticipating some volunteer work through our local hospital system….Just waiting for my paperwork and TB test results to come back. I like that the hospital treats volunteers with the thoroughness of actual employees. Good structure.

I’m also taking online classes through my local community college just for enjoyment. Psychology. I’m currently reading Dr. Carl Rogers’ On Becoming a Person, which tracks his thoughts on the Humanistic psychotherapy movement. I DO find it fascinating: I love to hear all sorts of takes on life and what makes it go round. Now I’m contemplating what to take in the spring. Possibly a graduate social work class. At Rutgers University. And I’ll leave the house to do it!

The freelance writing has been pretty good (although a little bumpy) this past year, but I’m grateful to be able to use one of my interests to make a little side income. Social Security Disability Insurance can be tough to live off of.

Notice this post is not so much about my multiple sclerosis, but what has developed in spite of it. The only event that marked this past year and reminded me COMPLETELY that the MS lurks in the background was a searing bladder infection in the beginning of this summer. Caused a faux exacerbation that originally felt like a full-blown attack. It wasn’t. Thankfully. So no small/vague or large/acute attacks now for almost a year and a half. My record is close to two years (between 2006 and 2008.) Now it’s autumn of 2009 and I’m about my baseline normal, which is manageable. I’m looking forward to the holidays and the arrival of oral medications in the spring of 2010. My neurologist, whom I trust with my life, has approved me for either of the first two coming out. We’ll see about insurance coverage at that time. I’m just ever-thankful that I am not only living but THRIVING with multiple sclerosis….. Sometimes it’s just the luck of the draw. And who knows why? But I feel the need to make the most of what I CAN control.