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.

Wednesday, May 25, 2016

Carrying things, but still keeping two hands on my wheels

My purse from Sasha Leather (used with permission)
I need to keep my phone and wallet with me. When I put stuff in my pockets, they fell out and hit my wheels. When I carried stuff on my lap, it flew to the floor. I pondered how to carry my phone and wallet while still keeping my hands on my wheels.

I sometimes loose my speech. So I use my phone to text my family that I need electrolytes or that I'm stuck.  I also have an app on my phone. It speaks what I'm typing, to help me communicate what I need help with.

I thought if I could wear something around my neck, then my hands would be free to push the wheelchair. I have weight restrictions and bad disks in my neck. So I needed just the minimum. I looked for ideas on Google images. At first I thought something like the passport carriers looked good. But they were a little bigger than I wanted. I saw this image above from Sasha Leather and knew it was exactly what I was looking for. It was the perfect size to fit my moto x phone. The image led me to an Etsy shop, where I purchased it. There's a little pocket inside to hold cards. I keep my debit card, ID and and handicap parking card in there, with my phone. When I go into a store, all I need is this little purse. Before I leave the house, I take out cards I may need on my trip. Like if I'm going to the library, I add my library card to my purse. There are other things I need to keep with me, like pink salt, electrolytes, water and snack. But I don't need to carry all that all the time, I just need it close by or easily accessible. I keep my small backpack or cooler in the car. If I get stuck and need my electrolytes right away, I can just send one of my kids to the car to retrieve it. I've seen people add bags to their wheelchair, but I don't know how to stay balanced in my chair with weight or bulkiness of bags added to my chair. I'm rather accident prone and thought bags attached to my chair would be disastrous.

This case is leather (durable), light weight, and I think its pretty cute. Its been a great, affordable adaptation for me. I was not compensated for this post, just really happy with my purchase and wanted to share about this great adaptation for me. Here's the link to the store if you are interested:  Sasha Leather (Etsy shop)

PS. Other things I'm working on to carry stuff, (future posts): I got a picnic basket to set on my lap to try to carry stuff around my house or in the store. I'm using a 3 tiered rolling cart in my kitchen. And I'm working on an apron that Velcros in front, so I don't have bulky ties between my back and the chair.

Monday, May 16, 2016

Safe internet searching for info about wheelchair living

Clothing has been a challenge to me over the years for multiple reasons. I do prefer comfortable clothing and cute hats. After a month of hours in a wheelchair every day, I realized I needed to adapt my clothing even more. My first clothing experiments have worked great. I've been studying online pictures of adaptive clothing. I'm in the process of other experiments, then I'll share about all these clothing experiments.  I've also discovered more specific things I need to figure out, to get around the house and out in public a little more independently. Unfortunately I also discovered innocent internet searches about adapting to wheelchair living, often turned up pornographic search results. It's been a challenge to look for what I really needed. I'm learning safer search phrases. My next few posts will include things I've been learning and testing out.

I often do searches on my smart phone, for helpful videos or stories. When I first started searching about adapting to a wheelchair, and working around paralysis, I was shocked and upset that all the top search results were adult content (that this adult doesn't want to see or hear about) images of scantily dressed people and that sort of stuff. What does that have to do with preventing pressure sores, lightweight wheel chairs and adapting my kitchen?! It appears those are top questions and curiousness about paraplegics, but that was not what I meant with my search phrases. I share my phone and computer with my children, and I don't want to see this stuff either. I use an Android phone. The first thing I did was log into Chrome and select a setting to block adult content. I now only search logged in to Chrome, so it has my safe search settings. I also found "incognito mode" was helpful for if my search phrases turned up unwanted results. Then my history, ads on various internet pages and future searches won't keep showing up inappropriate. My phone asks me if I found the Google search results helpful and I kept clicking on "no". Very recently I started finding some great websites showing how people adapted their house, parenting from a wheelchair, and finding creative ways to adapt to daily living. So now when Google asks, I can say yes, that was the search results I wanted.

This YouTube channel has been my favorite, called "Paralyzed Living". I've been subscribed to this channel about 5 years now. I think Brian Kenny is a great teacher. He's positive, encouraging and explains things step by step. I recently saw a video where he gave the date of his injury and was surprised to find that many of his early videos I watched were within a year of him being paralyzed. Because I didn't have a spinal cord injury, I never went through rehab where many wheelchair users learn how to do everyday things to be independent. This channel has many great videos including: how he gets from the floor into his wheelchair, how he gets in and out of the swimming pool, how he adapted his house, how he gets dressed, camber, wheelchair maintenance... There's so many little details that need to change when you regularly use a wheelchair and it becomes a big challenge to learn. Videos like this really help me, and make we want to try stuff too. Like this week I took my dog for a walk in my wheelchair. It was a success! Here are three of my favorite videos. This first video made me really interested in the lightweight rigid frame wheelchairs.:
Technically I should have been driving with hand controls from the time I was put in leg braces. It's thousands of dollars to modify the car, then only I can drive it. I have to take a special driving course, and it goes on my license that I use hand controls. So I adapted by taking my right leg brace off while driving. My doctors agreed this was safe, since I had sufficient ankle and foot strength while sitting, and at the time my problem was episodic, with at least a half hour warning for when I needed to get off the road or find another driver. I do not currently drive, because the paralysis in my thighs is now permanent, so I can't lift my leg to go from one pedal to the other. I was really encouraged to see this affordable way to drive, and that other family members could use the same car. I talked to my doctor about this video. He said when my hands get stronger we can try sending me to hand control driver training.
This was a really helpful video. I watched it several times looking at details to help me get ready for house hunting for wheelchair friendly things.

More posts about my adaptation experiments and discoveries coming soon.

Monday, May 9, 2016

Wheelchair debate: yes, or no? Just today or every day?

Quickie QRi rigid frame, ultra light chair
(Coming soon: posts about adaptive things I've been learning )

How to decide the answer to such life altering questions?! Here are some of my inner battles I've fought for years, and how I came to be at peace with my decision this month.

I think it's essential to really think about what you need. Not to guilt yourself, but to really think about (prioritize) what you need for daily living...More than just wilderness survival, because who wants to live their whole life just barely surviving? I want to live a life full of adventures! Even more, I want to live my life full of non-medical adventures!!! And yes, there are many countries where people will never have all the things we think are necessary. There will also always be people with problems worse than ours. (Post soon on humanitarian ideas) I'm convinced these kinds of thoughts won't help us with solving our own problems. It isn't about deprivation, but rather about really living. Our problems feel real to us, so they should be addressed as best as we are capable. Our best should always be enough. (Easier said then done!) I've also been given advice to delete the word "should" from my vocabulary. I think it's best to just think of our own situation and ponder what we feel we truly need. Then make a list of things you really like. Things (and people) that makes you happy, or that makes life easier. This way you'll be prepared when life knocks you flat on your face. These lists also help us better know which battles are worth fighting that day, which ones you might want to fight another day, or things you might just want to let go of, for good. Start out by making sure that your essential needs list is all taken care of. (Example: quality sleep, clean water, nourishing food, safe shelter...) If you can't meet those needs yourself, ask for help. I'm still needing a lot of help with food prep. Then when you are out of emergency mode, think about some of the "wants or nice things", to help you really recover and heal. I was really touched when I heard about a cello player I know getting chemo treatments. Someone came to play cello for him during the treatment. He said there's healing for your body and there's healing for your soul. Having someone play cello for him then, healed his soul.

When something is episodic it's really hard to know when to fight and when to stop before you do more damage. Most the time, I think I guessed wrong, because I usually over-do things, trying to fit in as much as I can on a "good day", not knowing when the next "good day" will come along. I've fought needing a wheelchair for years. What about staying independent? What about all the inaccessible houses I'll never be able to get into, and no sidewalks? Adaptations to houses are so incredibly expensive! How will I fit my kids and a wheelchair in a car? Cello, current wheelchair and 3 kids do not currently all fit in my car at the same time. Since I had good days, as well as bad days, I tried to avoid the wheelchair, for when I got back to good days. But then when my muscles refused to work, doctors refused to let me use a wheelchair, saying my legs would atrophy, so I just had to learn to fight it. I asked them how I was going to get to a bathroom or make food for myself when my legs paralyzed for 12-72 hours (which is what my legs were doing then). I told doctors that my husband carrying me and catheters were not acceptable answers. They had no other ideas or answers but still would not let me have a wheelchair. I decided to do it my way. Meaning I bought an inexpensive wheelchair (Nov 2012) for the extra bad days, since my doctors and insurance refused to help me with a need that I considered essential. I also knew I needed to move too, to find a house with wider doorways and a one level house. That was extremely hard for me, but ended up being really good for me too. The days I used my wheelchair, I found I was able to do so much more with my life, than wear myself out fighting all day. I didn't hurt and I slept great through the whole night. Wheelchair days were great, because I felt nothing, literally. I could finally relax and recover. But I only used the wheelchair when I was severely paralyzed from the waist down, to show my doctors (and myself?) I was "fighting back". If I tried to stand up on those days, I'd crumple to the ground, so the choice for wheelchair was easy those days. As soon as I could feel my legs, I was up walking again. The days that my legs were "only really weak", I drug myself along, sometimes getting stuck and needing someone to go get my wheelchair to get me unstuck, basically feeling tired of being tired.

My health stuff has been a lot worse than usual the last two months, giving me plenty of time to rethink the things I need. Being able to walk is a really big deal to most people. I've reached the point where I'm pretty done with it, physically and emotionally. A quick run in the store with leg braces and canes exhausts me and make my joints hurt for the rest of the day, and sometimes the next day as well. Walking incorrectly for years, dragging my legs and leg braces at the hips to move, I now have permanent damage to my body. I now regularly fight multiple herniated disks and have other vertebrae degenerating. Multiple treatments caused weight gain, and...I found I just hated all this, often thinking how a wheelchair would be so much easier, wondering why the idea was so horrible but still didn't feel ready yet. I started feeling it was now doing more harm than good. I started wondering if I stayed in a wheelchair, could I maybe save the rest of my spine and my arms and hands? I don't even walk in my dreams any more. Instead in my dreams, I am either stranded, stuck on the ground trying to figure out how to get home without being able to walk or drive; or I'm speedy fast in a shiny red wheelchair, not in pain, with everything adapted to the right height for me, daily living adaptations already figured out.  (If you can't tell, I'm an all or nothing kind of person, with irrational expectations for myself, even in my sleep.)

Me visiting an art museum on bad leg day 1 Mar 2013
I started getting less and less warning time for severe paralysis. The last few months, less than 5 minutes, or sometimes just a few seconds warning. The episodes also kept lengthening in how many days it lasted. After years of not getting enough electrolytes into the muscles, they can become irreparably damaged. My first round of leg braces about 9 years ago, the guy was concerned I already had permanent damage in my thighs and was compensating how I walked. I often feel a pulsating, rhythmic contraction, (either muscle contractions or nerve impulses) when episodes start or stop. The feeling stayed pretty constant for several weeks in my abdomen and thighs, which first convinced me it was permanent not episodic there now. I had a really bad flu in March that made me extremely ill for 3 weeks. Since then my legs just quit, they made the decision for me. Honestly, I feel so relieved I can now medically be justified to just stay seated!!! Yes, honestly it's hard to readjust, but not nearly as hard as what I was doing. I just feel relieved and glad the decision is over, so I can focus on other things, like keeping my hands working, and working on my adaptive way to play violin.

My new(er) doctor saw me last week and discussed wheelchair living with me. My doctor had safety concerns I hadn't even thought about like I'm high risk for falls whenever I get out of my chair. He thought I needed a motorized wheelchair for bad hand days, but I didn't even want to think about the cost involved with that and the challenges of transporting it out into public. Fighting the need for a wheelchair for so long made me become more dependent on others to bail me out. Using a wheelchair helps me feel less stuck, safer, more independent and I feel that I have more freedoms.  I currently have a simple transport chair like you see in hospitals and airports. This Quickie QRi chair pictured in this post is being custom built for me right now, hooray!  So my re-evaluated needs are: I need to be in less pain, be safer (preventing falls), and have increased mobility. I'm extremely grateful and fortunate (feeling blessed) that my family supports me and helps me with my decision to stay in a wheelchair. I'm actually enjoying figuring out how to live a better life by being a wheelchair user.

A puzzle I recently did with my husband
I believe that everyone needs to feel loved. Everyone needs joy and contentment. We need good friends. We need to be able to bust out laughing. We need family support and need to give support. Not saying these are easy things when life feels overwhelming. But it's good goals to work towards. Then when we are out of crisis mode, we can add the nice things we love. My list has things like: picnics in a beautiful place, chocolate, puzzles, listening to beautiful classical music, sitting by trees and watching birds play, playing my violin, Skyping my friends, sitting at the table for dinner as a family, sewing, going for a walk (or roll) with my family, reading well written historical fiction adventures, ...and more chocolate...all things that can be done sitting just fine...and I can see so many "good days" in my future now!

Periodic Paralaysis reported on in British newspaper

Here's an article written about Susan, who runs a Periodic Paralysis support group that I joined and find immensely helpful. Susan Q. Knittle-Hunter, and her husband Calvin Hunter do amazing things to help people like me with support, and trying to help make the public aware of our situations. This is what my neurologist gave me a tentative diagnosis for last year. Susan has a rare form of Andersen-Tawil Syndrome (ATS).  She can switch between low and high potassium in the same episode. I'm the hypo form, always low in potassium. A London newspaper did several calls to interview her. Our facebook group shared some concerns we have, Susan passed the concerns on to the reporter. I have concerns like I feel that doctors aren't taught enough in med school about nutrition and rare diseases, and electrolyte disorders (outside of only emergency room visits, as opposed to long term complications). Really glad for the awareness this paper is trying to do. Most people it takes 20+ years to get diagnosis. Newspaper article 5 May 2016 click here:  Woman wakes up PARALYSED...50 years to be diagnosed...

Here is the blog Susan writes: http://livingwithperiodicparalysis.blogspot.com/
I love the facebook group. People from all over the world post challenges, ask questions and share things that worked for them. Right now the group is over 500 people.

Coming soon: I'm working on posts about adaptive things I'm trying, videos and blogs that I found helpful and my thoughts on permanently going into a wheelchair.