MS Strength

Okay, I’ve been taking it easy and recuperating now for almost 2 months. Stopped working (again) the beginning of May, and now tomorrow is already July 1st. Did the steroid treatment the very beginning of June for almost 2 weeks (3 days of solumedrol IV, then 10 days of prednisone taper-down.) I am going stir-crazy! I’ve been out of the house, of course, but I miss the part-time schedule I had at the library. The hours were perfect for me: 1-5pm, 4 days a week (including Saturdays, but I was so happy to be working outside of the home I hardly cared.) Problem was, the work was completely inappropriate for someone with multiple sclerosis.

When I get into remission, and it’s going very well, I tend to overestimate my energy reserves. I am someone who used to run track in high school, and walk long distances in my twenties with my girlfriends to keep in shape. So when I am feeling up, up, up, I have a tendency to overdo it. Like at the library. I was reshelving books, mostly in the children’s section. Bending, stretching, kneeling, pushing carts. And did I mention the heat? The library, being a government building, doesn’t have the best air conditioning system. Not to mention that almost 3 entire sides of the building are made up of glass windows, for aesthetical puposes. “Green house.” Ugh. So even thought the intention was good, I was in the right field, wrong position.

I am happy to say that I’m getting back out to the library system in July. The volunteer coordinator for all of the 20+ county branches will have me help her, voluntarily, enter the “mountain of data” she has into the computer system to maintain the volunteer programs. I will be volunteering 2 hours on Fridays, just to get my bearings. I need to see what level of physical abilities I have for the outside world. My plan is to maybe up this schedule gradually when the summer is over, and maintain this for a year so I can truly know what sort of part-time work I can physically handle. It may be that this volunteer work will be my “outside” career, but if it’s meaningful, that’s fine. I have a few irons in the fire with my freelance writing, a women’s health website that I’ve built up in the past 2 years, and I can literally write in my sleep (really—– the beginning of this blog was written at the tail end of complete steroid insomnia/delirium.)

Anyway, I’m content to go with the flow and see what happens with this volunteer opportunity. And ever so grateful that someone found a need to be filled and took a chance on me, again.

PS: Look for a new post about going to the MS specialists before my actual diagnosis (flashback to 2001-2004.) What a roller coaster ride that was….

I’m pretty excited about a local work-out place that has yoga classes for people with MS. I found out about it from my monthly Nat’l MS Society magazine (local chapter.) If you belong to the society, your local chapter might have such listings in their monthly magazine. Also listed are aquatics sessions (assisted and open swims) at local YMCAs, and some exercise programs for those with less mobility. I’m not 100% sold on going to this yoga group, though, because there is a closer program 5 minutes down the road, and they have a seniors’ group…Now don’t laugh, because I joined a free senior tai chi class at the library in the winter, and it was a lot of fun. There was little pressure to be “talented”, and a lot of encouragement from everyone.

My target date is July, since I am coming out of my recent relapse (thanks again to my love/hate relationship with steroids), and I need to get “back out there.”

In the summer of 2001, I was working full-time as an ultrasound technologist. I was also doing a “stat” call at a physical rehab hospital afterhours, to check seniors for blood clots in their legs (one of the side-effects of being laid-up with a new hip or knee replacement.)

The work was very tiring, even for people without multiple sclerosis. A lot of the techs would vent in the break area about how patients were always getting “squeezed” in. I absolutely hated that too, and found myself liking the health field more in theory than in practice. Patients were constantly being sent over “stat” because the business was new and of course, the doctors/owners wanted the money! About 25% of the cases that were added on needed immediate attention. I was so weary leaving there sometimes, and then every third week I might have to bolt over to the rehab hospital to do those cases. The money was very good, but for me, it was not worth my energy, which was dwindling fast.

In July of that summer I had another attack, this time affecting my right hand. It felt tingly, numb, and weak, just like my left leg had been the summer before. I had trouble combing my hair, brushing my teeth, and writing. I could barely freaking write! The left leg problems came back at the same time.

Now that I was working in a medical office, I told one of the techs and one of the radiologists. The tech said maybe I had a pinched nerve from scanning the patients. The radiologist immediately said, “Maybe you have multiple sclerosis.” She wanted to do an MRI pronto, but I promised I would get to a neurologist.

And I did. And he, being a general neurologist, wanted to do every test under the sun to figure out what was going on. I told him about the Lyme disease and treatment, so that made the situation a bit confusing. Basically he sent me for bloodwork to check for chronic Lyme disease, lupus, thyroid problems (yes, they can cause tingling in the limbs), blood sugar levels, and other things. The bloodwork came back negative for everything he checked for.

Next came the MRIs. Brain and C-spine (the top part of the spinal cord that attaches to the brain.) These came back with several (not a ton) of “lesions or scars” along the spinal cord indicative of multiple sclerosis. So it seemed a positive case for MS, given the symptoms and the MRIs, but to be more certain, the neurologist sent me for a lumbar puncture, or spinal tap. Yuck. But the hospital staff was kind and I have to say that in my experience, the most compassionate nurses have been male. Anyway, this blog entry is becoming a book, so…..the spinal tap came back positive for oligoclonal bands, something that is present in up to 90% of MS patients’ spinal fluid, but uncommon in anyone else’s. Strike three.

So this neurologist told me I had “probable MS”, and said the next step was to send me to an MS specialist. That is another story…….