Bringing My MS Story Up-to-Date

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.

7 comments

  • Great blog and this information is very useful to everyone.Bringing Story and very Useful blog.

  • Jen

    Ironically my good friend just had the lap band surgery less than two weeks ago. Going well.

  • My 2nd cousin had the lap band surgery a few years ago (in Mexico due to lack of insurance coverage for the procedure). She was experiencing problems (it had slipped I think) and returned to the same hospital which did the procedure in the first place (against her cardiologist’s advice to have it done at home in OKC).

    There were complications involving internal bleeding, out of control diabetes numbers, heart attack (I believe) and subsequent death a week later…in Mexico, alone, this past August. I wanted to write about it, but couldn’t think of any good way to do so.

    After researching the topic, I discovered that apparently “adjustments” need to be made to the lapband regularly. By best wishes to your friend, Jen.

  • Jen

    Sorry, Lisa. I don’t know what else to say about your cousin.

    My friend was able to get it covered by her insurance (she works for the county) on the basis that she was considered morbidly obese (surprising because she doesn’t appear that way to me, but it’s because of her body mass index — BMI.) I guess another case of insurance coverage not always being fair. I’m glad that my friend has been fortunate with the coverage though, because she’s very entry-level, her family is currently on her insurance, and it’s one of the few perks she gets.

  • Jen:

    First I LOVE that picture…reminds me of Asseteague Island outside of Ocean City, MD.

    Second, I feel the same way when my MS Symptoms are under control and the disease is not in the Forefront of my life. I’ve been thinking about it alot lately as now that I am back to work, trying to make some positive life changes I noticed that other than doing my shot, I rarely think of my MS except for when my legs are bothering me (1x a week usually due to lack of sleep).

    I think it is good NOT to focus on our disease when we really don’t have to. As you said when you are in a flare and need to vent and know there are others out there who understand it’s cathartic to discuss it. I imagine as the disease progresses I will blog more, and reach out to support groups etc over the years. But, why focus on it now when I feel pretty darn good! 🙂

    I think it’s great all the volunteer work you are doing and going to school! It’s important to keep yourself busy and feeling fulfilled. I’m glad to hear you may be a candidate for the oral medication when it comes out. Good news all the way around! 🙂

    Enjoy your weekend!

  • kim

    I love you updating the ms story, i hate to focus on it, so maybe it is so much in the back of my life, I try to ignore it all the time and go on living a normal family life. 🙁

    I am glad you are doing so well and I have thought about volunteering at the hospital also. You are doing wonderful!!

  • Jen

    Thanks, you guys. Love ya’s! 🙂

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