Don't come here expecting to feel sorry for me - I don't.

I hope that sharing my progress and thoughts can offer some nugget of information or a point of view that can help anyone else struggling to come to terms with having MS, living with any form of MS or who lives with, supports or knows someone with it.

I’ve said before that I want to be really open about the stuff I’m dealing with, without it being the topic of discussion all the time. But, like I said when I posted on The Chronicles of Nani after my diagnosis, it’s not “why me?” it’s “why not me?” If there’s something I can do to make it easier for someone living with MS, or living with someone they love having MS, well, that’s why me!

If you or someone you know is affected by MS in any way or if you just seek to understand it, you are welcome here!

Sunday, April 28, 2013

Still Not Cured

First off if you follow this blog and are still here, Hello! Thanks for coming back! I’m still here, still have MS. Oh come on, if I’d found a cure I’d blog about it. If I’d found a cure I bet a lot of people would be blogging about it. But no, no cure. I’ve just been kinda lazy about posting.

There have been challenges so far this year. On New Year’s Eve I was sick, I’d caught a cold and was feeling gravely throat and tired, a nasty cold. David brought me home Chinese and I got half way through the won ton soup and started feeling achy, like a fever achy. So I sat down on the couch and fell asleep.

David wasn’t feeling too well either, come to find out later a number of people we’d been with the weekend before got sick, and I vaguely remember him saying happy new year and asking if I wanted to come upstairs or just sleep on the couch. I opted for staying put. I awoke at just after 3AM, still achy and slightly chilled and when I tried to get up, I couldn’t. I tried a few different ways grabbing the sofa, the walker… My husband came down after hearing me crying and whimpering and tried to help, short of bending down and picking me up, I wasn’t going to be able to move. He called 911.

The first couple days of 2013 lack the clarity my memories usually have, especially ones that recent. After my first ever ambulance ride, I was invited to stay with the staff at the hospital for a few days. It was the flu! The flu amplified every MS symptom I have, which is basically that I went from barely able to move or function to not being able to move of function at all for a couple of days. No, I hadn’t gotten a flu shot, I never get sick, I only get an actual pesky cold every few years, why would I get a flu shot?

Accepting and living with a disease takes pretty much constant adjustments and you don't get used to every new challenge at once. I was diagnosed in 2011, but the symptoms have been there since 1996. The girl who “never gets sick” has actually BEEN sick for 17 years! This year, and every year from now on, I’m getting the flu shot!

The hospital stay that started on January 1 took care of my out-of-pocket limit with insurance so, while I had almost finished my payments for my MRI in 2012, now with the hospital stay added It’s going to take until October…2014. The upside of that is that for the rest of THIS year, the insurance company picks up the full bill so I’ll ask both my PCP and my neurologist to make sure they order anything and everything they might want done next year by December!

I’m doing okay now, except that the reality of living in a 1950s era two story plus basement house is starting to take its toll. We did get a shower chair that I sit on outside the tub and pull my legs over and get out the same way. That has taken some of the shower anxiety away. There are a few other things I need to do as soon as I can. I need elevated toilet seats and grab bars in the bathrooms now and between the pain and pinched nerves that are almost permanent in my neck, arms and shoulders from climbing and the jeans that are wearing out quicker than I can replace them from sliding down on my butt, I really need to figure out a way to get a stair climber. I’d say the upper body and rug burn pain is almost worse than the back and leg trouble from the MS! I really want to work on finding a way to remove all the steps from my world whatever way I can. It’s not just for comfort, but safety too.

With the out-of-pocket done for the year, I’m going to be getting a power chair! The only thing I’ll have to pay for is the cup holder. My dream was that I’d use the power chair and our paratransit service for my husband and me to go to Mud Hens games, then I’d want the cup holder, right? It would also hold a bottle of water at the farmer’s market or when I’m dropped off an hour before my doctor’s appointment and with a power chair I was going to have the mobility to go to vocational rehab and get a job! So, I’d want coffee at work too.

Except that the power chair won’t be leaving the house any time soon. We don’t have room to install a ramp. I can still use the chair in the house and it has leg lifts so I can keep the swelling down in my ankles that I get from not enough weight-bearing exercise. We can still use the manual chair for baseball and doctor’s appointments and that cup holder can motor coffee from the kitchen to the dining room without me spilling it now. The carpet will appreciate that.

I’m not totally giving up on the power chair, but it’s going to take some time to come up with the solution. I’m open to any suggestions that don‘t include “you need a ranch.” We’ve heard that from both sides of the family. No one who’s told us that has ever said it with their checkbook open though, ya know? But any smaller-than-a-new-house affordable ideas, even crazy ones, are welcome. In my world crazy has often been the mother of brilliant!

Okay, for now I’ll sign off. Later this week I’ll post about friends, family and caregivers, especially caregivers, and what those of us that have the disabilities need to know to understand what they’re dealing with so we can help them cope too