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.

PS. At age 39, I finally started my dream of learning to play the violin.

Tuesday, November 29, 2016

Clarisa- deaf blind

I was told about this Facebook page.  Clarisa is deaf and blind. I really love the video of the dad titled, "I am so thankful for Clarisa". I love that he holds his daughter while he signs about how he loves her. On the FaceBook page in the "about" section it says, "Clarisa Vollmar is a DeafBlind baby. Instead of being an object of pity, she has inspired many people around the world. She is a beacon of hope!" .....So since I can't figure out how to link to that video, I hope you'll go check it out. 
https://www.facebook.com/ClarisaVollmar/videos/
 
Clarissa has a go fund me page. https://www.gofundme.com/ClarisaVollmar Her page has a cute picture of her laying in a basket of small balls. It says "Her videos has collectively over 5 million views in a year! Your donation for would enable us to continue make instructional and inspiring videos on Facebook, all for without charging anyone."

I have a young family member born deaf and blind. He's made huge strides. With surgeries he can hear and see a little now. He's happy, always has been. Everything is funny and a game to him. If anyone were to pity him, that would be silly. He would wonder why. I doubt anyone with disabilities wants pity or finds it helps anything. Most people I talk to are very averse to it. Personally I find it just wastes time that can be spent trying to figure out new ways to do things. Or time that could be spent reading a book while eating chocolate.  I'm really enjoying these videos and seeing this family learn and discover cool stuff.

Sunday, November 13, 2016

Hand challenges- Things that are helping me

I'm going to try making videos to explain things a little easier. I started a you-tube account several years ago to have a place for some of my family history video clips through my Virginia blog. I'm reworking all that. I've found several helpful You Tube sites, on how people adapted. People tell me they like what I'm sharing, so I'll give it a try for awhile. Here's a video clip today on how I'm working with my hands. It shows some things that are difficult and what I'm trying to do about it. If you have questions you'd like me to make a video about, let me know.

Thursday, October 6, 2016

Trying to exercise and loose weight with health limitations

Gaining weight in a wheelchair, when you wanted to loose more, is really discouraging! When you know you need to weigh less for your health problems, yet your health issues restrict you; Muscle paralysis when I do much of anything, and having to counter electrolytes to account for exercise; Having weight limit and physical restrictions is so hard! I kept trying to do "just do my best" but little by little I get slowly worse. Yesterday, I started complaining to one of my best friends, how yucky I feel and that I'm ready to drastically change, in hopes I can do at least a little better. I seriously need to see some type of improvement somewhere. I work so hard with food already its a bummer to not see measurable results. Even though I know it would be so much worse if I didn't work hard with food. I just want to see more results.

Huge concession, to show I'm really serious, and until I can get my numbers under better control, no chocolate. Its the only refined sugar (and has copper) that I buy, and I average about one chocolate bar per week. (Dairy free, soy free, and very dark chocolate).  I use a lot of fresh vegetables and fresh fruits, and wasn't quite sure how to count that sort of stuff. I mostly just do stretching and riding in my wheelchair. How do you measure that too?

My friend recommended, and I've now started "My Fitness Pal", an app. I have it on my phone and bookmarked online. So far, so good. Seems easy to enter stuff. My daughter and 3 friends signed on last night as my friends to cheer for me. My daughter told me she got a notification I burned 33 calories doing my daily night time stretching. That made me laugh. And I got a notification that my friend came in under her calorie goals and what she did for exercise. I'm seeing how this will be really good for me.

I've got a wheelchair ramp now, and my arms are getting stronger. Not my right hand yet. I have adapted by not grabbing the rim, but instead my hand covers rim and wheel, which is not quite as fine a motor movement and works well for my mobility. It's fall weather, so I'm ready to start trying a roll down my street, as often as I can. As far as I see, pedometers aren't quite ready for measuring wheelchair movement like steps. But I was Googling how wheelchair users with muscle issues try to exercise. I found a guy reference a source and found it, regarding calculating calories burned in wheelchair: http://tntoday.utk.edu/2011/10/28/wheelchair-exercise-calorie-burning/

Food not only affects me with food allergies, and being celiac...but literally everything is affected with an electrolyte problem. Even things we often don't think about like PH (alkalosis for me), and voltage gates of the cells. I'm now trying to consciously think of food as medicine. I'm learning certain foods always make me feel good. Others like avocado help me a lot, but I have to work with them, because of high naturally occurring copper and I get copper poisoning easily. (Two days last week I had to take benedryl for all the welts I kept getting.) My doctor actually put me on a low copper diet and we came up with a plan. Copper is an essential element and in many fresh vegetables that I love. It also seems the foods I like high in potassium are also high in copper. Digestion, processing food and moving food through the digestive system is done by electrolytes. So when mine drop fast, that's where I usually feel it first. I have found some foods like quinoa, squash, cantaloupe, cherries and apples always make me feel great. Anti inflammation foods usually help me, quickly. I digest fruits much easier than vegetables. So I often stick with simpler veges like spinach and zucchini on tougher days. I also do well with (and like) black beans.

Trying to meal plan and track food, ...I've always know it helps and works. But when you already feel overloaded? It just feels like too much. So I haven't been doing it. Back to my good meal planning software that I do love (previous post: good meal planner) and find easy, I've just been too overwhelmed. My friend was reassuring me that if I tracked it, I'd see results faster. And I'd see patterns easier.  Like which foods help which various symptoms. So I'm doing it now. I'm committed. The app makes it easier to enter food and weight. I don't have to think about numbers either. It calculates for me what I've been doing. I have some friends trying with me, that have similar muscle and food challenges. So it's really feeling much more doable. Friends helping and cheering for you makes all the difference.

For exercise, every day I do stretching in the morning and night, to help with spasticity etc. I've done that for years, stretching I learned watching yoga videos and physical therapists helping after my last round of injury. This time, I will also go for a long roll along my street. I tried walking my dog for exercise. That does not work, she's way too crazy and tried to pull me in the ditch a few times. I got a DVD of "Sit and be Fit", from Mary Ann Wilson. Designed for seniors and wheelchair users for safety and getting a little more cardio exercise in. I'm also going to do 2-3 exercises therapy showed me were safe for me with extra light weights.

So there's my plan. And I'm happy because I think I have a really good plan for me with my unique needs, that will make a difference for me.

Wednesday, September 7, 2016

When you feel awful, try humanitarian work!

some draw string bags
liners in bundles of 50
When you have chronic health problems, it's easy to feel discouraged. It's easy to feel limited and have thoughts like: I can't do much, I can't help, I can't make a difference... Feeling helpful and needed is such an emotionally important thing! To think about helping someone else, (and actually doing something), instead of  having too much time to think about your own problems,...it's rather freeing.

Last September, I read an article in our local newspaper about a project to help girls around the world. It really spoke to my heart. I'm finding that their situations are so much harder than I ever could have imagined. And this was something I could do! A really huge problem all over the world. With a really good plan. And I could help! I had some bad health problems and needed surgery when I was young. I cannot imagine not being able to have soap and sanitary supplies accessible through my challenges! And I'm sure many girls and women have problems like I did, but without medical assistance, so I really wanted to help.

Here's the article that inspired me and touched my heart. Its about our local chapter of Days for Girls: local news article, project info
I'm excited because our local chapter has connections with the Catholic Church. Catholic clergy can safely get to areas not easily accessible to humanitarian aid, to distribute our kits. Recently we found out a lot of children were still at home, not able to go to school. I was glad that our last batch of kits went to the girls who can't even get to school in Burundi.
This is the Days for Girls website, if you would like to look for a chapter where you live, to help sew. Or if you have supplies you wish to donate to your local group: http://www.daysforgirls.org/
They also have a fun FaceBook page, where people post info and pictures of their kits ready to send to girls. Sometimes pictures of kits being received too. https://www.facebook.com/DaysforGirls/ Today's post shows 1005 kits were received in Congo! Hooray!

shields, ready for top stitching
I met our group about a year ago, at the start of the new school year. It was a week after I read the article. I wanted my kids to do this as part of school. More awareness of others worldwide, while learning and practicing sewing skills. My girls helped cut, pin and use the serger. My son helped pin and thread ribbons through the draw string bags. I made it a goal to make 50 complete kits with my family. Then I'd just sew what ever was needed to help the group assemble kits. Last week, I just turned in my 50th kit, plus 10 more! Much of this year I haven't been able to drive. But we picked up pieces from the group to work on at home, until I was well enough to meet the group again.The quilt shop has a really nice sewing room they let us use once a week. I'm very grateful to the shop to work in such a nice place. I don't get out much these days. But it makes me really happy to go to the quilt shop and sew with other women.

I mounted my computer monitor to the wall, so I'm looking up, to help my neck problems. I like to watch old movies while I cut, pin, etc. I'll work on batches the length of a movie. (BBC Masterpiece Theater while sewing is a real treat for me.) When I have sewing machine marathons, I plug in earphones and listen to quiet relaxing music to help me unwind at the end of the day. During my remodel, I put down a vinyl tablecloth and had sewing marathons at my dining room table. I love this project and plan to continue supporting it for the rest of my life.


It's feel working on these kits is relaxing and fulfilling. This helps meet my emotional need: to feel like I can contribute something, so I feel less physically stressed.  And I feel something profound in my soul. A gratitude I can do something important, despite my physical issues. You don't have to be able to walk, or talk, or have strong hands to do this project. I tried to find and use the brightest, cutest material, hoping that they know someones was thinking about them as they sewed. And hoping one part of their life might possibly get a little bit better with my gift, made with love.

Sunday, August 21, 2016

Making doorways easier for wheelchairs

I quickly found it challenging to go through a door, then turn around and try to close the door behind me, while in a wheelchair. Reaching backwards to close the door doesn't work well for me. Those arm muscles don't work so well and I usually just end up hitting my wheels or loosing my balance. This is a simple modification we did:
Handles with levers are much easier to open with weak hands, as opposed to a round door knob. Round standard door knobs requires a gripping motion, which is more hand strength, than a push down with your hand on a lever. Then a handle on the other side of the door helps me pull the door shut, so I don't have to try to reach backwards. This door is in a corner, so I couldn't shut the door behind me by myself until we added this handle. After testing this door and finding doors became a challenge and a barrier, I knew I didn't want to deal with this every day in my own room. So during our remodel, I asked the builder to not put a door up leading into my bathroom. (master bath) That decision has made life much easier for me. Especially trying to work in already small and tight spaces. This door pictured has worked so well for me, that we're adding handles to other doors in the house now too. We found we needed to purchase larger screws to get all the way through the door. With the doors being hollow, we wanted the handles to be more secure.

A year ago I read a book I enjoyed called, "Rolling Back Through Life Disabled", by Mike Shirk. I bought it on Amazon Kindle.  I thought he was very inventive and thought up a lot of affordable creative ideas. This is a link to his blog. I particularly like his hooks he made to grab and open things easier. His writing was the first I read, that got me thinking about clothing and where seams should go. His ideas helped get me thinking about simple things around my house like modifying my door. http://lifedisabled.com/category/mobility/home-modifications/
I also saw on the Paralyzed Living You Tube channel, (on the house tour,) his house
door inside the garage had a handle. As always, I am not compensated for these opinions. Just like to share things that helped me in case they help someone else too.
See this video at 6:16 and 6:50 for his door.

Friday, August 5, 2016

Adaptations for weaker hands

I drop and break things all the time. My fine motor skills aren't very good any more. My arms and hands have stayed weak for 3 years now, so I decided I need some new ideas, and decided to learn more about quadriplegic adaptations. I started looking at pictures and reading more about what quadriplegic said helped them and why. Depending on level of SCI (spinal cord injury) quadriplegics have a wide range of what they can do with their arms and hands.

I'm right handed, but my neuro stuff (and facet joint issues that affect hands) are worse on the right side. When my doctor saw me last, he said my hands weren't strong enough to qualify for hand controls (for driving.) My left hand is a lot stronger than my right hand.

I found that a lot of ideas involve strapping the hand to things. After studying several pictures, I decided to experiment. I ordered industrial strength Velcro that's sticky. I also ordered Velcro that you sew to things. Two things I drop a lot are my phone and my kindle. After holding them for a minute my hand goes totally numb, I can't keep my grip, then drop whatever I'm holding. Or my hand cramps and starts to hurt. I made an elastic strap and sewed Velcro to it. Then I did the corresponding other side of Velcro in industrial strength, to the back of my phone and kindle.The elastic is rather loose. The way I set up my kindle, my hand is strapped to the right side, so my thumb sits on the front to tap the pages forward.

I've been testing this about a month now. I say this experiment was a huge success. I only made one strap and alternate between the two devices. I think I want to just keep a strap stuck the back of both. So I will make more elastic bands with Velcro sewn on. This way every time I pick up my phone, I just hook my hand through the back.  It's less stressful, (and less frustrating) not worrying about dropping and breaking so many things. It's physically much easier to hold things this way. It's a rather inexpensive adaptation too.

I did a similar thing with my violin bow, so I'll post about that soon.


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!