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, December 26, 2016

Complicated Feelings: chronic health

I wanted to share my perspective and some honest feelings and opinions regarding chronic health issues. I'm reading/hearing most people with chronic health problems struggle with their feelings and wonder if they should feel the way they do. I consider myself a generally happy person. So people are surprised when I say stuff annoys me or makes me mad. Many people think they aren't allowed to feel these things, they're already enough of a burden, so they carry a lot of guilt. Feelings are often extremely complicated, hard to understand, and feel overwhelming on bad days.

I feel like I can be really patient with others. But I'm not very patient with myself. Annoyed at myself because I get so tired doing stuff I'm sure I could've done for hours when I was 5 years old. The last few months I've had major digestive issues. I was really discouraged and impatient because I worked so hard at making healthy food choices, working around my difficult food allergies and copper issues, ... yet I kept getting incapacitated spending way more time stuck in bed than I wanted; trying not to the think about all the stuff I was supposed to be doing. Each day, I felt I was getting more behind in responsibilities, and no matter how hard I tried to not think about it, it kept making my body worse. Then that annoys me, that I couldn't process those feelings, so then my body rebelled. It's a bad vicious cycle to be in.  I found some good video clips about digestive problems for wheelchair users (another post soon), and saw the problems I was having took people with spinal cord injury a year to really recover and get in a good body rhythm. How long should it take me, since I don't have a spinal cord injury? No idea. But I realized expecting to have my problem resolved in 2 weeks wasn't very realistic when it takes some people a year. Having a more realistic time frame helps me be more patient with myself.

I've been working really hard a few months now with exercising and food. (another post on that soon too) I built myself up gradually, to being able to do an hour of exercise a day. Then I woke up one morning last week and couldn't lift my arms up. I could barely sit up in my chair. For 3 days, no matter what I tried, my body refused exercising. My muscles kept shutting down within two minutes of trying. Not exercising seemed to make my bad disks flare up. I  kept trying not to cry at everything because I was just so frustrated! I only wanted to go forward, I didn't want set backs to where I was physically 6 months earlier! Then I had to rationalize with myself that I didn't waste 6 months of exercises, that this wouldn't be permanent. I was messaging with a friend, who had just had these same challenges the week before. Talking with someone else who understands really makes a difference.

Here's some jumbled thoughts and opinions, in smaller pieces: 
  • I've read many times that when life altering things happen, we need to let ourselves grieve. Even if we haven't had someone we love die, we are still allowed to grieve without guilt. When someone gets in a car accident and is paralyzed for life, they need to grieve. Here's a definition of grief: http://www.dictionary.com/browse/grief
    • 1. Keen mental suffering or distress over affliction or loss; sharp sorrow; painful regret.
      2. A cause or occasion of keen distress or sorrow.
      3. (idiom) come to grief: to suffer disappointment, misfortune, or other trouble; fail:
  • We can mourn the plans we had to change, that life won't turn out the way we wanted. We can feel disappointed that we can't do stuff like we used to.
  • Having to change how we do everything is really overwhelming! It does cause exhaustion, stress and distress. That stuff can consume most of our thoughts for months! I don't think we can really avoid those feelings.
  • Comparing usually isn't helpful, unless it's to try to understand typical time to recover, or looking at someone with a similar health problem to see what they found helpful. It's important to keep flexibility for your differences in mind..... If you need a cane, and your friend uses a wheelchair, ...you both have needs. The important thing is to each have your needs met, the best way for you. Just because someone looks worse off than you, doesn't mean you should deprive yourself of the help that you need. Trying to justify why you should just get over your "insignificant problem" only causes you harm.
  • We can feel we failed that day. We can feel it was a bad day, and just try again tomorrow. A bad day doesn't mean we are a failure. It just means we had a bad day, and we're allowed to have bad days. We're allowed to have several bad days in a row. We can also look for nice things during that time, like seeing a rainbow, seeing a toddler smile and wave at you, watching birds play in a puddle, or smelling roses and lilacs. 
  • Every one processes thoughts and feelings differently. We don't get to pick the speed others process those thoughts. We can't rush anyone to grieve so they can move on with their life. We each have different speeds we need to go, no one processes things in the same way.
  • I don't think anyone should tell you how to think, feel, or react; and we can't choose how others think, feel or react. 
  • Sometimes family and friends can be hurtful. Sometimes we misunderstand what they meant. Sometimes we want the same thing, to have a better life, but have different opinions on how that can happen. Sometimes knowing you have the same goal lessens the bad feelings.
  • Sometimes people feel awkward and don't know what to say to us.  Will they offend us if they say "go for a walk" when we can't? It helps to tell people where you stand. I explain that sort of stuff doesn't bother me. I tell people I prefer humor, and that I prefer to hide out in the background. 
  • People may disagree with your health choices or tell you that you are wrong. They don't live with your body, so ultimately your opinion is the most important and most correct regarding your body. 
  • When we're sleep deprived and too tired to make food, we can get extra cranky or extra sensitive.
  • We can be surrounded by people, even people we love, and still feel lonely or isolated. 
  • When my electrolytes plummet quickly, not only do I physically feel awful, crazy emotions pop in my head. I can feel angry, lonely and like crying for no reason. No thoughts attached, just a surge of unwanted feelings. When I feel that surge of feelings, followed by the thought "I'm going to barf!", I get to my electrolytes as fast as possible! As soon as I balance, those feelings go away. That's my body's warning sign that I need to fix my electrolyte levels fast.
  • We can feel angry and its really OK.  I just need to be left alone to blow off steam and work through it by myself. I usually don't stay mad very long. Most of the time, if I can just say something makes me mad, be left alone 10 minutes, then I can then move on to the next thing in under an hour. I can be mad at nothing specific, or just feel mad that I don't know how to get unstuck from that moment, or that I want to be able to do it myself but don't know how. (impatience) I'm usually not mad at the person I'm talking too, unless I specifically say, "I am angry at you for this ____".  Anger at feeling limited, usually makes me want to fight back, in a good way, to not quit.
  • When I'm overloaded about new health things I have to deal with, my body shuts down, and I need to just stare at a wall and do nothing,...for hours. Once I get through that phase, then I'm ready to tackle books, whatever I can read, to figure out how to fight back. That phase usually lasts a few days. Then I feel ready to try new things. Finding out I was allergic to nightshades about 5 years ago was really overwhelming. I felt overwhelmed for a few months. But I recently discovered Vietnamese food doesn't use any of my many food allergies. Except sometimes peppers which can usually quite easily be left out. I'm now a huge fan of pho!
  • Getting stuck in bed for a few days gets really discouraging. It's when I feel most alone and bored. I don't want to hear or see electronics because I already feel sensory overload. I can't get in a car like that, so I feel rather isolated. I get dependent on my family during these rounds and don't like that, I like to be independent. It's easy to worry about how long I'll be stuck like this, or if I'm being too big a burden. Is this a new permanent problem? I'm too tired to think of plan B.
  • Escaping is good, for awhile. Until we can process feeling yucky. Then it's nice to live life in the moment. I like to escape by reading historical fiction novels. I'll also watch videos and read biographies about other wheelchair users to try to get ideas for adapting. So when I'm feeling better, I'm ready to try stuff!
  • Even after years of this, I still feel guilty cancelling stuff last minute, or arriving late. I get up and get dressed every morning and try. Sometimes I make it to the car then suddenly start throwing up from alkalosis. I know there's only so much you can do, but I don't like feeling like I'm not dependable. It still stinks.
  • I've learned that while playing a stringed instrument, you need at least a temporary grip on your emotions if you are playing for other people. If you're mad you can't get that note, you can hear those feelings in the song. I think playing an instrument gives a healthy outlet to process feelings.
14 Questions I ask myself (periodically reassessing):
  1. If you could change things, how would you spend your time? Not the answers people expect you to give. But if you had 10 hours of free time a week, how would you spend it? Would you take a music lessons? paint? learn cake decorating? join a sports team?
  2. What is the most important household stuff to help your day run smooth? Can you hire someone or reward your kids for helping with these extra things? Top 3 things for me right now: 1) a clean kitchen (meals are hard enough with a clean kitchen); 2) clean floors (sticky stuff sticking to my wheels makes me irritable very fast); 3) clean, unwrinkled laundry. (Trying to get dressed without clean clothes in my dresser can be unnecessary stress. And wrinkled stuff doesn't work with my sensory skin issues.)
  3. What do I need to get to, and how can I get there? Doctor appointments, meetings, they go on our Google family calendar, that shows up on everyone's phones. As I add things to the calendar I first check on transportation with my family. There isn't public transportation right by my house. I do have some things I'd like to do in DC. When I get better, I know I can be dropped of at the train station, then feel independent by getting around for the day on public transportation. 
  4. What things can I do when I need to decompress?
  5. Which friends/family can give me a sympathetic ear then make me laugh about stuff? Which friends/family can help me readjust my expectations when I'm impatient? 
  6. What stuff am I good at, that I can still do when my body wants to shut down?
  7. What stuff am I feeling guilty about?
  8. When I'm annoyed about having to depend on people, (or embarrassed about something), how does my family feel about that? Ask very specific questions. Most the time I find out I'm the only one annoyed by that issue, and I'm surprised how they feel.
  9. If I only had energy for one responsibility today, what would I do?
  10. When I have a bad day, did I try my best? Do I feel it was enough? Does my family feel it was enough? They're usually nicer about this than I am.
  11. How else could I do this same thing? Ex: bad hand day adaptions, order online if grocery shopping is too tiring, etc.
  12. Is this thing or idea worth my limited energy?
  13. What things calm my body/mind quickly? For me right now: Listening to violin music, stretching, sewing, puzzles, reading books, decompressing by sitting still in a dark room for 10 minutes...
  14. Do I want to try something new? New food? I've always been terrible at sports, but I'm wanting to attempt wheelchair tennis with my husband when the weather warms up some.
Feelings are complicated. I think it helps if we give ourselves permission to just feel things, even if we don't know what to do with the feelings yet. They can affect us physically whether we want them to or not. Trying to  ignore them doesn't usually resolve things: Instead it can make us feel stuck or hold us back from joy. Life also doesn't pause until we get a grip on our feelings. We may still feel overwhelmed trying to get a grip on our feelings when a family member is diagnosed terminal, or deployed, or we get a new injury, loose our job, have to move,....Adapting can be hard, and it's normal to feel it's hard. Normal to feel disappointed, mad, hurt, left behind, deficient, misunderstood, frustrated and lonely. But we can feel better knowing it's normal. That it will get better. Even if we have a progressive illness, it will get a little easier when we figure out how to adapt to the latest problem. We may have more bad days than good, but that doesn't mean all days are bad days even though it may feel that way. And one day can have good and bad things through out the day. I once had a horrible day that kept getting worse as the day went by. A friend showed up surprising me with a delicious bowl of soup that was free of all my allergens...that changed my bad day to a great day! Finding people to love, and doing things with people makes life more meaningful. Trying to work through our feelings lets us grow. It helps us see the good things in life. Therapists may be needed. Friends and family are also very helpful , and sometimes they are enough. Thanking people for their help and time really helps.  Is there anything better than spending time with someone you love, an unconditional love that goes both ways? It means you love each other on bad days too. I know I am very lucky and blessed to have the husband that I do. I also know a best friend or close sibling can make all the difference in happiness too. On my worst days, these are the thoughts that keep me going and keep me happy. It's so worth making the effort to nurture our relationships!

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. 
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.

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!

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. 

Monday, March 7, 2016

Efficient Houses- What do you want your house to do?

This weekend, I went to visit a Frank Lloyd Wright House. http://www.woodlawnpopeleighey.org/aboutpope-leighey/  I was very curious to see it, because he was a pioneer with his ideas and philosophies. So much different than most architects of his day. I enjoy learning about how others think and live. Especially when their ideas aren't like everyone else's. I appreciate creative thinking. Even if it's not something I plan to try, I still like pondering the ideas. One of my first thoughts inside the house, was that it felt like how I remembered houses in Japan.  I loved the big long windows and built in furniture of the Wright house. The space felt bigger than many homes that I've been in, the same size. I was told Frank Lloyd Wright visited and studied in Japan before building this series of houses. In the office, there was a sign of quotes he stated about his Usonain houses. Like: gabled roofs, gutters, trim and light fixtures are unnecessary. He also purposely didn't do a lot of storage space, so people wouldn't fill up the house with junk. I personally have trouble with most overhead lighting, causing me visual sensory overload. The lighting in this house was all recessed (simply), with the sunlight being most of the light source during the day. The dining room overlooks the patio, with floor to ceiling windows. Fruit trees and gardens were often planted close to the houses. These things all helped to make me feel very comfortable and appreciative of the efficient, yet beautiful uses of space. I felt that the house could really meet the average person's housing needs, but Americans seem to like more stuff and bigger spaces.

I lived in Japan from 1980-1983. Small spaces, sliding doors and tatami mats, but very efficient, with beautiful plants and gardens. I have memories of: zoos, tea with friends, amazing bicycles trails, cherry blossom festivals, with amazing picnic places. I even visited a traditional bath house. In "American Village" (temporary housing until could get on base) they had these big, 3 foot deep bathtubs, with very hot water. I plan to have a bathtub like that one day! Growing up with a big family, in base housing (military enlisted), I watched my mom get really creative with space. Once we had one bedroom with dressers in the closet to fit one more bed in the room. The closet in next room over had the dresses for all the girls. I visited two houses (only about 900 square feet), where my ancestors raised 5 kids. It didn't feel crowded.  Downstairs you entered the house into a living room. Then you went through the living room for the bathroom and master bedroom. Kitchen was off to the side. Upstairs, where the dormer windows were, the children all slept. A divider went up. Girls on one side, boys on the other. Sometimes an actual wall was built. Sometimes during the summer kids slept on screened porches.

Families started getting a TV in the late 1940's. But they didn't have entertainment centers, video consoles, DVD stands, computers etc. Homes weren't the entertainment. You ate, slept, washed clothes, worked in the garden, cooked, read, wrote letters, and mended. You worked outside in the fields, in the barns or at factories. Visiting with friends and family was important and enjoyed. During frontier days, a visit to town to get supplies and mail was a big deal. Communities came together to build schools and churches. A much slower and simpler time. I'm sure they had much less debt than we do today too, yet had richer lives. Maybe harder labor, smaller spaces, and less to do, but there were meaningful relationships, self sufficiency and more sustainable living.
old writing accessories: stamps, ink well, blotter, wax seals, pens with nibs

So what do we really need to do in our houses? Does our house reflect that? If we could have more free time, what would we do? How can our house reflect that? What function do you want each room in your house to be? I have one large room that functions as library, office, sewing room, school room and archives room. But my kitchen is only used as a kitchen. My bedroom is just a bedroom, no electronics or work in there.

I decided I would like to write handwritten letters, play violin and do sewing. Over the last year, I adjusted things so that my space is ready for those 3 things that I feel are important for me to do. My music stand stays up, in my parlor, with the violin right beside it, ready for practice. (I'd just move it if company came over.) I have a little writing desk set up with old writing accessories and a fountain pen. I also made it so that my sewing table stays clear, with my sewing machine ready to go, whenever I get some time. I have a rolling basket under my sewing table that holds my current mending. Also my cut out and pinned projects. I love to be outdoors and in a garden. Physically that's been very hard the last few years. So for plan B, to hold me over for awhile, I grew herbs and some flowers in big pots on my deck. I've been in my new house 3 years now. With physical limitations, I value my time and energy. I don't want to spend time cleaning stuff if I don't have to. I realized if I haven't used something since I've been in this house, its not worth my time or efforts. It gets donated, so I have more space and energy for the stuff I do enjoy, that feels meaningful in my life.

Monday, February 8, 2016

Practicing a song I love

I have always loved the movie, "The Sound of Music" with Julie Andrews. Even as a little girl, I was mesmerized with the movie. One song that I have found to be really inspiring over the years is "Climb Every Mountain". (Shown in official video clip above.) There really wasn't anything wrong with Maria wanting to be a nun. It was a good thing to want to do, and a great thing for many people to be. But for Maria, she discovered she needed to do something different. Something unknown, and scary. It's hard when you realize that you have to do something different. I've had a few times where I had to completely change my plans for my life. They were good plans. It was perfect for some of my friends and family. But I needed to do something different. A song like this helps me to feel more courageous to change course, even more than the "Confidence" song.

Two weeks ago, I was struggling to play my violin most of the week. My fingers kept locking up. My neck vertebrae were inflamed and I was hurting a lot, all day. So I decided to just focus on 2 notes I really struggled with to get right. They were always very sharp or very flat, I just couldn't quite seem to get them right. I've hung on to some sheet music I bought 20 years ago, and found my "Sound of Music" sheet music. I looked at the song "Climb Every Mountain." It had the two notes I was struggling with, about a dozen times! I started practicing it, and it was way easier than I expected it to be. I told my teacher at the lesson, I knew I hadn't quite mastered the other songs, but I was using this one to help me get those 2 tricky notes. Even though I had just picked it up and tried to play, starting the day before, I played better than I ever have before. I found that if I hummed the song, I kept the notes in tune. I think it was my best, because I knew the song really well and it had sentimental meaning for me. This was the whole reason I wanted to play an instrument, to play things in my heart, to be my other voice. A creative outlet for me. I'm still a beginner, but it's getting easier. I have a completely different way to hold my violin than is normal. But now I can practice for an hour and my muscles don't lock up at all from my neuro-muscular challenges. I've been able to practice every day this week. I found a different course that works for me, and it's very rewarding.

Monday, January 25, 2016

Quiet time is essential for me.

Today I was reading a blog post that sends inspiring words to homeschooling moms. This post on Simple Home School was about Self Care For Highly Sensitive Parents. Well that's me, sensory overload takes over my life sometimes! The blogger talked about this book that really helped her called "Quiet..." by Susan Cain. book on Amazon I can't get enough quiet, so I had to see what this was about. Over 4,300 reviews, best seller book in lots of places. People like Andrew Weil and psychology professors giving it great reviews. How could I have missed this when I love books so much? Then I saw the publishing date. Oh, that was an extra bad health time for me, preparing to move to a one level house and trying to get around in a wheelchair. Glad I can learn from it now though. I watched this video today, ordered the book on kindle and have completely loved all I've read so far. I completely loved this TED talk. I found it inspiring, and had a good laugh through the camp story.

Here was a TED poll

I thought maybe I just liked to hide out more, because I was too tired with bad health stuff.  The older and more exhausted I get, I seriously dream about how life would be easier being a hermit. I guess I associated introvert with shyness and I'm not shy at all. My daughter jokes that I'm the polar opposite of social anxiety. She saw me reading reviews and watching this video, so she read me the actual definition of extrovert. Oh, well I do not fit that all! Um, guess I should have read the definition a long time ago. As far back as I can remember, I made treks to the library, carrying stacks of books home. Then I built a fort to read in. I preferred puzzles with grown ups instead of joining the kids my age playing ball. I loved to talk to friends about books, and share books with them. That was way before my health stuff got crazy, so I've really always needed and enjoyed quiet time. Quiet recharges me. Noise, flashing lights and crowds of people for hours exhausts me and makes me feel ill. I think bad health stuff makes it more noticeable. I also think that goes the other way too. If a person with depression is also an extrovert, getting out and seeing people is needed even more when the depression gets worse.

I think one of the first times I realized I was really different from other people around me was on a 7th grade field trip to Montreal, Canada. I loved seeing so many flowers in the city. I wanted to see everything, because  some of my ancestors were early citizens of Montreal and Quebec. I loved the old walls, the old buildings, the beautiful churches, the French accents, boats on the river... It was so beautiful to see and feel! A highlight of the trip was to watch a game in the Olympic stadium. I was sitting in the stadium... completely baffled. Everyone else was having a great time, so what was wrong with me? I get no pleasure from watching sports. It's so loud, so crowded, lots of fast movements, people yelling, whistles, echoes from announcements...how could anyone enjoy anything so loud I wondered? How did yelling make people happy? Or why did they yell when they were happy? How can anyone think in a complete sentence with so much noise?! People leaving trash and spilling popcorn every where, yuck...Then of course a massive headache begins. I spent the whole game watching people and their reactions, trying to make sense of it all, wishing I could walk back to the hotel room.. But I'm glad it makes other people happy. When I first got married, I told my husband I wouldn't stop him from watching sports, but I just could not watch games with him, way too much sensory overload for me. It's worked for us. Thankfully he enjoys sports but isn't obsessed with it.

 So what would I like to do if I had tons of free time? What are my favorite ways to decompress? As soon as I walk into the Library of Virginia I feel immensely happy, excited, yet peaceful! A lifelong dream for me would be something like digitizing a collection at the National Archives. Or going to really old churches in Europe to help digitize their records. Once I went to an event at the DAR hall. I had to go around just to take a peek at the library, even though it was closed. I love visiting old farms where my ancestors were from or going to various libraries and archives. I love puzzles, board games, sewing with my mom, reading books, family history, trying to learn stuff on my violin, studying old maps of forgotten cemeteries (and homesteads) seeing how they fit together, gardening, more time with my husband and scanning (digitizing) while watching a BBC Masterpiece Theater movie on my computer, ...Pretty much all stuff that completely bores or isn't exciting enough for people who thrive on excitement. But I love that stuff.

A big challenge for me is that the rest of my family needs to be around lots of people to feel better. I've known people who had to go out to get popcorn or a drink, when it was in their cupboard. I couldn't grasp that concept. Getting in the car is never fun for me, and I despise shopping. (It's a chore) It would be so much nicer to eat allergy friendly popcorn in my quiet house, with birds outside my windows. So I've discovered I can be polar opposite of a lot of friends and family, but that's OK. If I need lots of people I can hang out with my big family. I have lots of friends, but like to meet in small cozy groups. When my daughter first asked me to go to the mall, just the thought made my heart race, immediately thinking "how can I get out of this?" Some of my kids over the years felt like they would shrivel up and die if they didn't see mobs of people or the mall, while at the same time I knew I would die and need 3 days in a dark quiet room to recover. I have to mentally remind myself these are normal and pretty safe things for teens to love. I am painfully aware now, that I was a very abnormal teen.  I spent all my high school lunch time in the library, that overlooked the ocean. The librarian became a friend and put books aside for me that she knew I would like. I've never had any interest in bars, clubs or parties. My idea of fun was a walk on the beach with a few friends, sharing some chocolate. Or having a picnic at a beautiful place. Thankfully my husband doesn't get overloaded and can take the kids to big things. And its really nice that my daughter can drive herself to crazy busy places that I avoid like the plague. Then everyone keeps mostly content.

I do love the messages in the book and video. We don't want everyone to be forced to be introverted and vice versa. We each have our strengths. The world needs all kinds of people. This explains differences in how people think and feel (even physically) to better understand each other. All very helpful things for me.

Wednesday, January 20, 2016

Finally! An effecient way to think about food

Food is supposed to be my friend. Yet, I despise it by 5PM when I'm exhausted and really truly don't want to think abt it. I'm frustrated daily, that it's almost time for dinner, I have to decide what to eat (while my brain is going into shut down mode), then see if we have ingredients for it. Fast food or take out isn't an option. I'd rather skip a meal then face all the allergic reactions for several days. But I know the rest of the family needs to eat, and I know I need to be consistent with food too. Really, whether I can walk or speak or not depends on foods and electrolyte supplements. By evening it's just all way too overwhelming to think about. Daily I think about how much easier my life would be if I could meal plan. I had the goal to just plan 2 days. That worked for awhile. But then I had days where I went to make the meal and found I was missing ingredients. Or I just couldn't stand up (or even think sitting -from bad episodes) or think of what to tell the kids to make. My brain could only sometimes plot out dinner, then fend for yourself the other two meals. But then its easy to miss multiple meals without a plan. Even a really simple plan would help, I just couldn't do it. Too many vicious cycles, for too long! My husband is amazing with food. He can think about food effortlessly, and it always tastes good. When I just feel like I'm going to cry about food, he can think up a plan and cook it. But he commutes a rather horrendously long, exhausting commute. In my opinion, food is my biggest obstacle of all my health stuff. Planning it and following through with meals. My children are great helpers. But to have a plan...

Then this epiphany moment came while reading Tsh Oxenreider's post about "3 things I'm not doing..." http://theartofsimple.net/to-not-do-2016/   I thought, "This is EXACTLY what I need!!!!"   I loved the overall idea of not making more resolutions, but rather instead rethinking your life, then simplifying. She mentioned she is using Plan To Eat (PTE), and included a picture. I immediately checked out the site. It's really truly free to test out for a month. I was an instant fan! I just gave an email address and created a password. https://www.plantoeat.com/   There's lots of great video tutorial clips.

I really can't use cookbooks. If I'm lucky, I might have one or two recipes in a book that meet all my needs. So we had a big stack of papers I kept in the kitchen cupboard. I love being paper free, but hadn't got to that point yet with food. I added the little "PTE button" to my toolbar. I found recipes, clicked the button, and immediately I had the recipe ready to save. It includes a link to where I saved it from. I also thought up recipes that we just do, without paper, so that ingredients could get on the grocery list. (Like polenta and roasted veges) We love carbonara. We make a version GF and dairy free. Corn pasta seems to work best for us. And we use Ramono or other sheep and goat cheeses. I was thrilled to see Jamie Oliver had a GF recipe like ours, except we often add fresh parsley. So I saved Jamie's recipe, (Jamie's site) added a parsley note, no need to type, yeah! Notes like "soak beans" automatically show up on the calendar the day before. I always forget that stuff. I found that on some sites with a lot of adds, it didn't copy over well, but a warning showed it didn't copy. If that happens, you just copy and paste. (There's a video abt that) I was also feeling more confident seeing several new food sites with lots of food allergy safe recipes. When I first started gluten free, I had to do a lot more mixing. Better mixes have simplified things a lot. It was great to find recipes that reflected that. I thought it was funny that my daughter explained "pizza, all mom's allergies in a box!". I actually found a pizza recipe I can make, while the rest of the family can eat regular pizza. http://minimalistbaker.com/goat-cheese-caramelized-onion-pizza/ I also found a Chinese dumpling recipe, gluten free. So excited to try that. I miss dumplings of all kids more than anything since going gluten free. So I'm really starting to feel optimistic and happy about food now!

I spent a few days doing "start up" stuff of finding recipes, basically going digital. I love efficiency. In two minutes I planned two weeks of meals, paper free. I just dragged and dropped on the calendar. Click on carbonara picture, drop it to Thursday night dinner slot. So easy! I also found I could copy a link, into my family Google calendar, and now there's a feed going straight from PTE to my calendar! I use Android. So I logged in through the browser, and there it is on the site. Planner, ingredients list, including a staples list. So if my husband is on his way home from work and stops at the grocery store, he can look at his phone and see what food is needed today, or 7 days, or two weeks, etc. Multiple options. I think the mobile version is good visually and with efficiency. The subscription is very nominal. There's no ads on the site, which I also like. I find all this totally worth that cost to have all my crazy food needs addressed. It's easier to plan healthy meals. And I only need to get what's on the list, instead of a cartfull because I hadn't decided on food yet. Hooray!! I'm am really excited about this better solution to my challenges.

(PS. I get no compensation for this. This is just a really nerdy happy customer.)