MS Strength

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.

My initial experience with anxiety/depression and IV steroids, outlined in my last post, proved to be very traumatic and a life lesson in getting appropriate help. I hate steroids, but I did them again this past spring during my last relapse. I’m glad they’re there, and I now know how to better cope when taking them (I make sure to get a prescription for Klonopin, a sleep/anxiety medication which works best for me while on them.) A friend of a friend is going to school for her counseling degree and she mentioned the possible mania and deep depression that result from steroid use. I actually experienced a milder version of anxiety and sadness this time around, and I also found myself doing something quite odd (I recently told this same story to another MSer:)

The strangest thing I ever did on steroids was lust after, buy, and return a blowup baby pool. It was June and I couldn’t sleep, so I was up at 4 am with the cat and I couldn’t tear myself away from the Sears.com website. I was lusting for one of those shallow pools with a filter, so I kept going to the website and looking at it. Finally I decided to buy it. Then I anticipated its arrival. Every day waiting for that damned pool. Then it arrived and the filter kept breaking, so I deflated it, stuck the whole thing in a couple of black Hefty bags, and dumped them on the customer service desk at my local Sears. I really chewed them out. This whole pageantry lasted my entire steroid use (about 2 weeks.) I normalized (somewhat) after that.

I don’t know what to expect with my next steroid go-round (I’m assuming this year’s won’t be my last), but I have found that it is definitely a learning experience and being fully on an antidepressant before using them, as well as visiting regularly with my therapist, helped me tremendously this past June. Just like with the steroids, I’m not fond of taking antidepressants, but I’m so glad they’re available.