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

A New Perk

There has been and will be again complaints about things that just don’t work as “accessible.” I think the people who design accessible hotel rooms, doorways in restaurants, public bathroom stalls, should be required to spend a day in a wheelchair and a day with a walker with a knee or both in a splint to freeze it so they understand for whom they are designing facilities. Really, try to maneuver a wheelchair between two doors that have a hallway with a right angle turn in between them, or step over a door frame that rises up an inch with a knee that won’t pick your foot up much higher than that. Stand in a shower with bad balance when there is not a shower chair. My husband and I like to travel on weekends and I’ve been there with all those and more!

I think the most laughable recently has been a rest area in Indiana on the way to my nieces’ graduation. My aunt and I were going into the ladies room. She pushed my chair in to the doorway. It was one of those walk in turn and immediate left and then another right to be in the actual rest room. My chair went in and the footrests hit the wall. The majority of the chair was still in the hallway. I couldn’t tell you what the handicap stall was like because there was no way I was getting into the actual bathroom. We ended up getting off the freeway at the next exit to use the facilities at a gas station.

I greatly prefer the more modern rest areas that have separate family/handicap stalls. Those stalls are wonderful for both purposes; family and handicap use.  If there is a family rest room available I use it. I figured that out at a St. Louis Cardinals game last year. When I asked where the ladies room was, the red-jacketed gentleman offered me use of the family/handicap bathroom. It may sound silly, but I’d never had a better bathroom experience at a baseball game before that! Note to anyone that hasn’t used them yet; the family and handicap rooms are actually designed to protect small kids and allow users of chairs or walkers a comfortable and safe bathroom stop. As a rule at an event or attraction, the first thing I do is locate the family/handicap bathroom so I know if and where it is.

But in the title I promised a perk. The family/handicap bathrooms are a plus and better than a supposed-to-be accessible stall. The perk is courtesy of the US National Parks!

On our recent vacation to the Outer Banks in North Carolina, we’d planned to visit the Wright Brothers museum and a few lighthouses. I wanted to proactively look into the accessibility of the different attractions. There are ramps to the monument at the Wright Brothers museum, but there are no ramps or elevators to get a wheelchair to the top of any of the lighthouses. Okay, if there had been a way to get to the top of a lighthouse in a wheelchair I’d have been shocked.  What I did discover is the Access Pass!

The Access Pass can be obtained if you have a permanent disability. The card can be obtained at any National Park or monument that is staffed. I got mine on the way in to The Wright Brothers Museum. The Access Pass allows me to visit National Parks and Federal Recreation Ares for free. That’s one personal vehicle in the park or the pass holder and up to 3 companions for single admissions. The wheelchair is not keeping me out of the National Parks, it’ making it easier to fill up my National Parks Passport with more stamps! We got our stamp for Cape Hatteras Lighthouse and I wheeled all over while David, my husband, climbed to the top.  I got lots of pictures, including of him sat the top. It wasn’t “easy-peasy.” At the end of the stop my arms were falling off! But it sure beats sitting at home looking at someone else’s photos!

Photo credit: Nani!

National Parks Access Pass FAQ

Crisis Mode Kicks In

It is NEVER funny when someone falls! The last time I wrote something about falling in a forum, people actually replied that they thought the story was funny. How is something where someone can get really hurt ever funny? I just don’t get that.

One fear that always in the back of my mind is what happens if I slip in the shower. Years ago my mom did that when she was visiting Grandma and my dad had to go pick her up, bringing someone to drive her car home because she’d dislocated her shoulder. The thought of being naked and wet and having to have emergency people get me out of the tub and take me to the hospital is mortifying. Yesterday I got to find out what I’d do.

The most dangerous parts of flying an airplane are taking off and landing. Basically the same is true for showering if you can’t really walk at all without assistance; getting in and out of the shower are the most dangerous times.

Yesterday I was feeling full of energy and although my right leg has been especially weak at times for a few days, I have a shower chair, so I’m not standing in the shower, I took a late afternoon shower/hair color break. The hair color was my ultimate undoing. In think the extra 15 minutes of sitting on the shower chair made it stiffer when I got up after finishing the shower.

I followed my careful procedure for getting out of the tub, using the wall-mounted soap dish for balance and the wall for support, using one hand to move the shower chair to the outside of the tub so I could move to the back wall to grab the cemented-in bases of the towel bars while I climb out, good leg first pulling the bad leg over when I’m on solid dry ground. Only yesterday, when I stood up and carefully moved the chair to the outside of the tub, I felt my right leg starting to buckle. I grabbed the soap dish and tried to tense up my leg muscles to keep me from falling. I almost regained balance and rose up too, but then I started slowly folding to the ground again. When I was close enough to not get hurt, I let go. Of course that’s the detail my brain recalled as I slumped down in slow motion. It probably happened faster.

There I was; not hurt, but wet and naked sitting in the tub. I tried to get my feet flat so I could move a little; sit up straighter and decide what I needed to do. Since the bathtub was still wet too, my feet slipped on the wet surface and I realized the first thing I needed to do was dry the tub and me.

Good tips time! When I shower, it’s usually after my husband leaves for work, so I’m home alone. Part of shower prep for me is to make sure I have towels on the towel bar so I can reach them after I sit back down on the shower chair I move to next to the bathtub, my cane next to the towels on the bar so I can grab it if I need it and my phone on the counter in case of emergency. It’s good to be prepared for the things you never want to happen.

I managed after a couple of minutes to regroup, to stretch enough to grab my cane and use the cane to pull down the towels. Two towels in the tub dried me off, except my hair, and the bottom of the tub except what was under me. I had to do some moving and resting in between moving to get that taken care of. Once the side of the tub was dry enough to safely do so, I used the handle end of the cane to drag the phone down and over to me. I said it was a late afternoon shower and I wasn’t hurt, just too week to stand up. so instead of a 911 call, I called my husband at work. He was due to be off work in an hour and I just wanted to let him know that I may very well still be sitting in the tub when he gets home.

Using the towels and taking frequent breaks in between little bits of movement, I managed to get myself up on my feet and out of the tub – 40 minutes after I fell. I texted my husband to let him know I was texting from the bedroom where I wrapped up in a blanket with three pillows supporting my back and read for another half hour before I got dressed and went back downstairs.


As a result of yesterday I realize that I really need real live grab bars in the shower that I can grab with both hands and use instead of the wet tiled wall to support myself. Also, perhaps an extension of the chair or a new chair that can extend outside of the tub too so I don’t have to step over. Maybe if I’m coloring my hair, I should get up and stretch my legs a little while the color is setting instead of remaining sitting in the tub is a good idea too.

But I learned that my “crisis mode” brain still kicks in. Boy the temptation to break into hysterical defeated tears was there at first, but I pushed it away to work on a solution, like I have all my life. So, take that, MS! Even with the bad legs, I’m still me and I’d still last for a while in the event of a zombie apocalypse. I have sound survival instincts…and a grave fear of being rescued wet and naked. I have a few bruises that have shown up today, but I’m okay; and my hair color looks great!