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.

Monday, June 19, 2017

Making My Bedroom More Wheelchair Friendly

Making things accessible often means really expensive or drastic, but it doesn't have to be. You can re-think the space you already have. Several small things made a big difference for me. Hoping this post might give you some ideas while planning your own more accessible space. Last year we did a remodel, making our living space more efficient, including moving our master bedroom. My current bedroom is a little smaller than my last bedroom, but I now have a bathroom as part of my bedroom, and it's much easier to get around in my new space.

We live in a rambler house built in the 1980's. (one main level) We chose the house because we could see lots of potential for good accessibility. It had wider than average doorways and hallways. In my last bedroom, (original master bedroom for the house) one wall had two tiny closets, the other wall a large window, the third wall was too short for a bed, and the room was without a bathroom. So, there was really only one place to put the bed and dressers. I have a queen size bed, so when I wheeled along the side of the bed to try to get into my bed, it was a really tight squeeze. Only about one inch on either side of my fingers. On my left side: the bed, on my right side: the dresser. Not very easy to get stuff out of the dresser. Also, by the time the closet doors opened, I was backed up against the foot of the bed.

The formal dining room was just a little smaller than the master bedroom, with two wide open doorways. 2 inches smaller in the width, 5 inches smaller in the length, but there was a better layout. When you exited the formal dining room, there was the hall, that just dead ended. Then a very small 1/4 bathroom, and further up the hall a side entrance to the kitchen. The bathroom was on the other side of the kitchen wall. We added hall space to the bathroom, making it a long, narrow full bath room, that’s easy to wheel back and forth in. We took out the sink and cabinet in the bathroom and put in a small wall mounted sink, that I can roll under. The second doorway to the dining room became the entrance to my bedroom where a door was added.

In this picture of my old hall, a tub was added, where the blue tape is. The tape line to the back wall was added to the bathroom. In front of the blue tape became closet space, the visible door opening in this picture became my closet doorway with a small bi-fold doorway to maximize space. The wall on the left side of the hall, from the blue tape to the back wall was taken down. Right about the front edge of this picture a wall went up, to close off the hallway. In the back corner of the bedroom (by the blue tape line), is the current entrance to the bathroom. I found from my old room, it's rather challenging to get through the bedroom door (open, get around the door, reach back to close it) then also through the bathroom door. I didn't want that challenge in my new space, especially in the middle of the night. So, there is no door between the bedroom and bathroom, just an open doorway entrance. I can't emphasize enough how much easier it without unnecessary doors!

The first picture in this post, you can see my bed is right by the doorway. I have several feet all around this side of my bed and in front of my dresser to wheel around. The dresser is on the back wall of the room with enough space to turn my wheelchair in a circle in between the bed and dresser. At night, I put my phone on the charger, setting it just under the edge if the bed, along with my kindle that I read every night. Then in the morning I pick up my phone and kindle, and take them to my office. I use a buckwheat pillow. It really helps me with my neck issues, I can't go back to other pillows now! The bed itself is a platform style bed, with a memory foam cushion. It's the same height as my wheelchair seat, making transfers easier. It's really nice that I can easily reach the light switch and the door handle. I got lever handles, much easier for bad hand days. On the outside of the door is a second handle to pull the door shut. (see picture on the right column of my blog) I also got a small grab bar to make getting in and out of bed easier. It takes good abdominal muscles to get up from laying down, which I don't have. My doctor asked me to get a bar for safety. There are some bars that go to the floor. My toes are a magnet to stuff like that. I could just see myself stubbing my toes every day when I got in and out of bed. I got this one from Amazon (link to bed rail) The bar is connected to a huge board that slides under the mattress for stability. I wish I had gotten this years ago, it really helps. (No compensation, just really love and recommend it.)

Our kitchen had two entrances. One that went into the regular, informal dining room, and one that went into the hall. When the wall went up for my closet, that blocked off the entrance from the hall to the kitchen. I thought it would be really nice to use that space in the old kitchen doorway as my kitchen space, where I could roll under the counter and park. The builder built a simple wooden counter for me. I bought custom glass to cover the painted wood. It's got my tea things, as well as space for me to do food prep.

We did a lot of thinking, measuring and looking for the smallest items possible, to give as much room as possible in a small space. I think because of these efforts, the space doesn't feel small. While the remodel was happening, I really thought about each of my things. Did I want to put it in my small space or give it a new home? (usually as donations) I enjoy minimalism articles, especially Joshua Becker's writings. I read a lot of these articles while planning for the remodel, pondering what I really needed in my space. I downsized my clothes to just what I really wear, (just a little more than a “capsule wardrobe”) we got better closet space, so we got rid of one dresser in our room. That also helped a lot with more open space. I wear 100% of my clothes now with most tops coordinating with multiple skirts. I only wear loose tops and long knit maxi skirts now and love them. (don't like pants or jeans anymore) I also don't have anything under my bed anymore which I'm rather proud of. I hung a nice old-fashioned mirror at wheel chair height beside my closet. I hung up less things on the wall, just picking my favorites, two of which are my father in law’s art prints water colored.

In my bedroom space, I now only have visible: the queen size bed, one side table with a lamp and small SAD light, one dresser (some decorations on the dresser), one music stand and my violin. In the bathroom, I have a nice wooden medicine cabinet, with 2 hooks for towels. Only a bottle of soap at the sink, with a small trash can between the sink and toilet. On the back of the toilet I have a small tray holding everyday things I need access too, including the toilet paper roll. A large grab bar is on the wall in front of the toilet. In my bathtub/shower, I have one bottle of soap, one bottle of shampoo, and a bag of Epsom salts handy. I have a white shower curtain and white curtains over the window.

The wide doorway of my closet (with bi-fold door) and having less stuff lets me wheel into my closet. My closet shelf was measured with me sitting in the wheelchair. I moved a small cabinet from my office to inside my closet. I keep sheets, towels, toilet paper and medical supplies in there. A pump for my wheel chair tires, a drying rack for clothes, and my two pairs of shoes sit on top of the cabinet, which is much easier to reach than on the floor. This closet space allowed for me to have a roll under sink without the cabinet below it. My husband also has a closet that was previously unused, walled off space. We keep the laundry hamper and travel gear in there.

I gave colors a lot of thought. I have this big thing against the color beige in my personal space. I usually like lots of color. The new space used to be 3 different colors, but I changed all the walls in my new bathroom and bedroom to white, except one wall I painted a nice Kelly Green. The bathroom floor and walls around the bathtub have nice gray tile. I chose the black/oiled bronze hardware. I really love the look of my new spaces, feeling that it looks very calming and clean. It's also all very low maintenance. I don't have a lot of energy, so I don't want to spend what little energy I have, just cleaning stuff. My room now has just enough, all things I use frequently. In the morning, I get dressed, make the bed, put my pajamas away, and my room is pretty much neat and clean. Every few days I sweep and wipe down bathroom surfaces and that's it. It's now been a year since we did the remodel.  My body feels calmer and less overwhelmed with less stuff visible. I feel much more independent with my more accessible house. I really love, enjoy, and appreciate my new accessible space!

Tuesday, April 18, 2017

Discovering I Have Other Relatives That Sign ASL

I'm pretty excited because I've been trying to learn ASL, and I'm practicing every day. Then recently a relative found me and told me I have deaf relatives and that ASL is their first language. Please see my other blog post for Paula's story. This is about my Mecklenburg and Brunswick Virginia relatives, so it's got some family history, because we have deaf ancestors as far back as colonial days in Virginia. And they attendeded schools, learning sign language. I've had so much fun learning and listening to these stories. Here's the story link: http://juliecabitto-preservinghistoryrecords.blogspot.com/2017/04/paula-wright-our-deaf-ancestry.html

Monday, April 3, 2017

Public transportation, tips in a wheelchair

This video posted on Spinalpedia REALLY inspired me. Check it out for great tips regarding venturing out using public transportation. I used to live in Los Angeles. I rode the buses there daily, when I was still young, walking and feeling healthier. It was fun to watch him get out and around, because it felt more possible, seeing someone else do it rather easily. One thing he mentioned that I'd never heard before, was disability passes; and that many US cities offer discounts, some at 50% off. I live in part of the DC Metro area. So as soon as I finished watching the video, I checked to see if there were options like this where I live. I looked up the VRE (commuter train), that runs on the Amtrak rails, and the Washington DC Metro (buses and rails).  The websites were very helpful, and all my questions were answered in the FAQ, and application instructions. I downloaded the applications on both the VRE site, and Metro site to take to my doctor. My doctor wrote that I need a wheelchair, that it's permanent, and that I need a companion. I'm not strong enough to go out by myself. I mailed in the VRE application. The Metro, you have to go in person. That was a little tricky for me because they aren't open on the weekend. So my husband took a weekday off, and we went up to Washington DC.

I hadn't gone out for a whole day for 9 months, so this was rather exciting and encouraging for me. Thankfully I figured out how to address some digestive challenges so I could stay out longer without feeling sick. It's a little scary to try to get out and about, feeling limited physically and also food allergy limitations. I got a pass for the Metro for me, and a discount card for a caregiver to travel with me. My cards are good for 5 years. There's a lot of people with various disabilities that can't drive. So I think it's great there's programs like this to help make transportation possible and more affordable. I've been wanting to do several things for awhile in DC. Now I can look online at schedules, rates etc. My disability/discount passes count as smart cards too. It's been a year since I stopped being able to drive. I thought this was a great way to celebrate, with a new way to get out and about again. Looking forward to some new adventures soon!


Here is a link to the website Spinalpedia: https://spinalpedia.com/ They have over 7,000 videos. Most of the people in the videos use wheelchairs and show how they adapted to do various things, like the video in this post.  Spinalpedia posts a lot on Pinterest, but I think you need to set up an account (free) to view most of the videos on the site.

Sunday, March 26, 2017

Current projects for blog posts

Me on a visit to Richmond, VA-Mar 2017
Lots of cool posts coming soon. I have several blog posts composed in my mind. I have stacks of interviews and stories to type up and share. I've been discovering lots of new resources, that I want to tell people about. It's very easy to get impatient with myself, because things now take much longer than I want them to. I've been trying to learn personal things for my health things as fast as I possible, so I can get back to more of what I love. Family history and genealogy feel like they are a part of me and my soul.

I have an electrolyte disorder that affects my muscles, including my vision and speech. I permanently went into a wheelchair last March. (2016) My hands are not strong enough for hand controls, to allow for driving. So, I also stopped driving then. I had so many places I wanted to see for my research! I live in between Washington DC and Richmond, Virginia. Both of which have libraries and museums I love. Public transportation doesn't come as far as my house, I'm still in a rural area. But there is a train station about a 10-minute drive from here. My doctor helped me with handicap paperwork to get disability transportation passes. I got train passes this month, so I can try to get out and about again a little easier.  I've gotten much better at balancing my electrolytes so I don't feel sick as much, and I feel safer to go out. I can also finally type on the computer longer periods of time again.  My wheelchair has made life much better and easier for me. These things have been a huge boost to my confidence and feeling more independence.

My Gray line from Mecklenburg, Virginia was from County Armagh, Ireland. (Immigrated 1838) After getting my DNA done on Ancestry.com, I discovered I'm more Irish than I thought and have found more Irish ancestors. Last week, my husband took me to Library of Virginia (state archives), and I got to see a presentation from the Ulster Historical Society, on St Patrick's Day. They sent us home with several folders worth of resources.  I also copied two very large chancery cases that day.  This month, I've learned a lot from Dear Myrtle's Irish Gen study group, on Google +. I've been rather immersed in Irish research this month and loving it! I also have some things I'm working on with Polish ancestors, so I'm planning a visit to Washington DC.

I made a list of dozens of webinars I want to watch. I've been shown dozens of new websites and resources just this month.  I plan to type up things I've been learning for my blogs. This past year, I got all my old archived emails into Evernote to tag and organize. I've also moved notes from personal messaging systems like FamilySearch, Ancestry and Face Book, into Evernote. The more I tag and put my notes into notebooks, the more I see more blog post ideas; As well as questions that I want to go back and ask people, now that I've learned more things the last few years.  Of course, as with life in general, these things are always a work in progress. I'm going through my notes and getting things into my computer a little at a time so it's easier to share. I'm thankful that I am still moving, not feeling stuck,...even though it's a slower pace than I prefer. Much more coming soon, ...a little at a time.

(This post was created for all 3 blogs: My Virginia blog, Polish blog, and simplifying-health blog)

Friday, February 24, 2017

Exercising- Working Through My Muscle Issues



I've now worked harder at getting healthier for 5 months! I met 2 out of 3 goals. My goals in Sep 2016 were:
1) Lose half a pound a week.
2) Work up to a half hour of exercise, 5 days a week.
3) Keep a food diary.
Results: I only lost 4 pounds, but I'm exercising much more than I thought possible in only 5 months. I've struggled with exercise intolerance for several years. My muscles don't hurt, they just usually stopped working at the 10-minute exercise point. I began exercising 10 minutes per day, trying low key exercises for seniors. Then I worked up to 10 minutes twice a day, then 3 times a day. Then I started exercising 20 minutes at one time. Now I exercise an hour per day without any muscle issues. I also start and end each day with stretching. Bad muscle days still happen, but less frequently now.
I use the "My Fitness Pal" app to track food, exercise and goals. I think it’s an excellent app to improve health. (I used the free version) The most surprising find for me, was to see that I regularly only got 1/4 of the US daily recommended amount of calcium and sodium. I mistakenly thought I had those 2 electrolytes balanced enough. Most foods I eat are naturally low in sodium. I wasn't aiming to eat low sodium, it just happened. Adding more sodium/chloride has made a huge improvement in my life, especially with alkalosis. My doctor said I still need to take more chloride, and gave me a new goal for that. I told my doctor I was rather discouraged I didn't lose more weight with so much hard work. My doctor explained I need to be more patient with my body. There's still too many variables that need to be under control longer before my body will start losing weight. I'll continue working on my healthy goals, subtracting the weight loss goal for now. My doctor endorses my plan and encouraged me to keep trying even though it's hard not seeing more outward results. Patience is so hard, I wanted more weight loss by now!

The most helpful thing for my exercise stamina, was finding a workout geared towards my muscle issues. When I first got the Wheely Good Fitness DVD, I was still struggling to make it through 20-minute low key workouts without my muscles locking up. This workout was way more challenging and intense than anything I had ever tried, as well as twice my endurance length of time! But I was able to do this work out the first time I tried it. I found the instructor motivating, encouraging and sometimes humorous. Kris has muscle problems himself which I think is why his workout works so well for me. Both the aerobic and weights workout always make me feel amazingly better. They loosen up my muscle tightness, make me stronger, clear my head and have been a huge help alleviating pinched disk pain. When I feel disk pain, I start up the weight routine. Previously during bad pain days, I just did 2 pound weights, stretching and rested. But the last two weeks, I also tried my aerobic exercises. It quickly stopped the pain, was more effective then resting, and helped me pull through the episodes. I'm surprised yet grateful to see my body can do that now.

I've decided that despite little weight loss, I've been rather successful after all! Gaining physical strength gives me more independence. I'm starting to figure out how to balance my health things. I'm trying to be more patient with my body, because I’m realizing it's working hard to overcome a lot. My body simply needs more time of what I'm doing to get healthier.



I love this workout! I got my DVD on Amazon. Today I saw this is available as part of Amazon Prime streaming. I bought the Wheel Fit wheelchair aerobics Level 1. Here's the website if interested. I am not compensated for this post. I just feel it's made a big impact on my efforts to get healthier: http://wheelygoodfitness.com/