Welcome

Welcome! My health problems add craziness to my life. Here I post ideas I've tried, also questions I'm still asking. I have an electrolyte disorder. So I have crazy neuro stuff like complicated migraines, alkalosis, loosing my speech and paralysis. (including legs and hands) Little by little, foods had to go, they affected my brain and immune system. So I avoid like the plague: soy, dairy, gluten, nightshades, and try to avoid refined sugar. My body requires pink salt and electrolytes. I now use a speedy red wheelchair that I love. I've craved a simpler life, but how do you do that with crazy health stuff? I've already had a fire and flood, so I really don't value possessions. I value people and experiences. I am not compensated for any posts, just my opinions.

Sunday, July 17, 2016

New adaptations for me: clothing and my house

I'm working on several posts about new things I'm learning and trying that I think are cool. Like lots of Velcro strapped to my hands and stuff so I don't drop things as much. And adapting (again) how I play my violin. I haven't posted for awhile because it's been rather hectic trying to adapt to so much so quickly. In the midst of it all, about every 2 hours I have to readjust and try to balance electrolytes. I've been adjusting to doing everything sitting, not being able to drive, not having strong arms or hands, and trying to remove some barriers. Like doorways too small to fit through in my house. It's all getting easier with lots of time, rest and practice. I feel pretty great being in the wheelchair instead of walking. I don't hurt as much, I'm not so exhausted. I can get around so much easier, faster and safer than I have for several years now. Trying to have my family lift me up the front step to get into the house wasn't very great. I haven't figured out how to do crazy stuff with my wheels yet like this video from "Paralyzed Living". My arms aren't strong enough yet, but I have anti- tipping wheels for when I'm ready to try. I'm trying to slowly build up strength. I have to be careful, because too much exertion and those muscles will just quit, sometimes for several days.


I'm currently having my house remodeled with rooms switched around. We had an informal dining room that I made into a parlor when we moved into the house. The parlor was about the same size as my bedroom. We had the parlor, a hallway and a half bath on one side my house. I wanted to make the space more efficient and accessible for me. The old parlor will now be my bedroom. The old hallway now has a bathtub and a closet in that space, attached to the new bedroom. The doorway to the bathroom was widened, without a door to the bathroom now. Getting through a door then closing it behind me is usually a challenge. Now I won't have to be challenged in my own room! The space isn't huge, but just enough for what I need. Our other bathroom also had the door widened. I also recently got a really nice wheelchair ramp built. I already feel a lot more independent! The remodeling should all be finished by the end of this week. I can hardly wait!

Clothing has been difficult. I've always preferred skirts. They didn't get stuck in my leg braces and pants make me feel suffocated. I feel like I can breathe and relax more in skirts. But I found sitting in a wheelchair, moving my arms to roll forward, having no waist.. my skirts seemed to regularly wriggle up into my rib cage. I didn't have that problem walking. Also underclothing and other seams cut into my skin after hours of sitting and I've heard scary stories about pressure sores. Everything seemed to be scrunching and bunching around the middle of my rib cage.  Dressing in the bathroom and at the start of each day is difficult with snaps, hooks and buttons (with finger issues), trying to balance lifting myself and arrange the clothes on me with wimpy arms. My first few days in the wheelchair, I knew clothing had to change and simplify!

I was scared to look up clothing and underclothing ideas online, because as I said in a previous post, bad search results already popped up for searching things like: handicap, paralysis etc. After some thought, I remembered old people often have mobility problems, so I started looking up ideas for clothing seniors. I guessed right, good safe search results. I read from others who use wheelchairs about paying attention to where seams are in underclothes and pants to try to prevent bad pressure on the skin. On an arthritis page for seniors, I saw you could get bras that zip up in the front and people said they were comfortable. You could also get underclothes and specialty jeans with just side seams, so you aren't sitting on seams. I decided I needed calf length to ankle length skirts, because I wear knee high socks and I didn't want socks and skirt bunching up around my knees where the edge of the seat is.  I found long maxi skirts are really comfy, cute and easy to get dressed with. I got a couple of fun patterned maxi skirts and a few simple solid color knit shirts, to mix and match outfits. It works. But ...even as a preemie, I had a big stomach. After lots of prednisone to treat neuro stuff and herniated disks, my stomach got way bigger than I wanted. Numerous health problems make it extremely hard to loose that weight, and I really don't like seeing pictures of me to see how much bigger I've gotten. Overall I'm usually not very self conscious, but a big abdomen, is just something I really wish could be different. Especially since I try so hard to eat healthy. I've heard other wheelchair users say stuff like weight struggles aren't made more flattering in a wheelchair, so I'm trying accept that it's just going to be this way for now. Knit shirts are comfy, but I think they make me look and feel even bigger than I really am. So I'm going to work on sewing some shirts I like. As a teenager I use to have what we called peasant style shirts. Some were cool embroidered Mexican shirts. I loved them!! Poofy sleeves, with drawstring neck, loose fitting. I got one shirt this week to try and it's definitely the way I want to go.  I got some pretty lightweight material and now I'll start working on trying to sew new shirts.

I discovered a blog I really like, while I was looking up new clothing ideas for wheelchairs. I now subscribe to "The Wheelchair Mommy." She's a mom and homeschools like me. I love that she writes about simple every day things. I think she really shows that your life is not over or as limited as you first think, because of a wheelchair. She shows that you can still do fun stuff and dress nice in a wheelchair. Moms wash the dishes and get groceries whether they are in wheelchairs or standing. This was a post I liked that she did about new wheelchair jeans with better pockets. http://www.wheelchairmommy.com/2016/fashion-is-for-every-body/

Patience, rest and perspective really seem to help. I'm grateful things are starting to feel easier and more doable!

Next post, my experiments with Velcro!