Welcome

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

Sunday, December 13, 2015

Audio emails, when typing is hard

I love emailing with people. I get lots of emails asking about family history things, answering questions I posted on message boards, commenting on things in my tree or blogs. I want to thank people. I want to answer their questions. I want to keep in touch...but my hands and eyes often don't work very well. Sometimes these episodes last a week or two. Often my eyes can't handle looking at electronics for more than a few minutes then I need a long break from it. I have special filters and coatings on my glasses. If my answer took a bit of thought, it often took a month to send, then I'm apologizing too. Taking so long REALLY bothers me, (and stresses me out) that I can't keep up. Its something I want to do. My Google dashboard shows I average 800-900 emails per month. That's a big crazy number to keep up with! This has been my challenge and dilemma for awhile.

I subscribe to a few simplicity and minimalism blogs. I have lots of pictures and art on my colorful walls, because they make me happy and relaxed. Most of my art was done by my father in law. My pictures are often old family pictures it was hard to find, and they tell a story. Minimalism isn't about an almost empty house or deprivation. It's about getting rid of what you don't need, so you can have time for what is important to you. So that looks and feels different to everyone. Different phases in life need different things. Thinking about how I spend my time feels important to me, because I take longer to do things being handicapped, so I want my time spent on worthwhile things. I've had a lot of trouble with emails, and wish I didn't.

Then I saw a post in October that really helped me from the site "No Sidebar". http://nosidebar.com/simplifying-digital-life/ They talked about trying audio files for email replies. Just that week, my brother sent me an audio reply in a message on Facebook. I loved it, because he lives halfway across the country, I don't see him much, and it was really great to hear his voice. I decided to start experimenting. I've been asked by people I tested this with to share specifics on what I did and used:

First I just looked to see what I already had.  I use a Logitech headset for Skype calls. So I just started using that for recordings. It costed me about 30$ five years ago. Here's the one I use, on Amazon: (The Logitech headset I use) I use Windows 7, and there was a microphone in my program files. I just clicked on the microphone icon (using my headset) and it started recording. I saved files to the desk top, then attached them to emails, as if I was attaching a picture or document. I asked my friends to give feedback and tell me if it worked. First 6 people said it worked great and they loved hearing my voice. Then I got 3 replies saying it didn't work. Turns out the ones it didn't work had Apple things. I went to check the file types and realized then that the files I made were WMA files, meaning "Windows Media Files." Oops!

The next plan was to try to make MP3 files. I tested various programs. I found a free program that I like and regularly use now. It is called Apowersoft (Apowersoft program here) I sent it to Windows, iPhone, and Android users. Everyone I tested told me my files were working. I got my emails all caught up in 2 days! The Facebook recorder I believe is 60 seconds limit. You can do multiple audio files there if you want to talk more than 60 seconds. The Apowersoft doesn't limit like that. But too long a recording will be too big for email. I also am a huge fan of Evernote and love that you can do audio clips, pictures, etc all in one note. Then tag it, share it and always find it easily. I use a Motorola Android phone. I love that I can hold my phone with my Gmail open and speak into it while looking at my computer. So I read emails on my computer and answer them into my phone. The speech to text works great. I did look at some friends' iPhones and showed them they had the same option. The microphone is located in the corner of the keyboard. That's what I had mostly done that last several months to keep up a little better. But the audio clips in email is the fastest and easiest way for me to try to keep up with emails. If typing is a challenge for you (time or physically), try experimenting with audio clips!


PS. I am not affiliated with any of these products listed. I was just looking for a solution, Googled ideas, tried them and liked them.

Monday, October 26, 2015

Free Lance Star newspaper articles about family history

One of my favorite things to do is family history. I love volunteering at my local family history center. I teach classes on how to use FamilySearch. I also give people individualized help, trying to help them discover more about their ancestors. I really love FamilySearch, because there is a huge world wide focus.  World wide records accessible to the public, for free!! With huge amounts of records regularly added. I wish I had more hours in the day to help with indexing, and digitizing projects! I help with indexing when I can, and look forward to when I can volunteer to help with digitization-preservation projects. There's several premium subscription sites like Ancestry.com, Fold3, My Heritage, NewspaperArchive.com and FindMyPast that our center gets (free to patrons). I personally love and subscribe to most of these sites and also use them in addition to FamilySearch while helping visiting patrons. Here's an article printed today (26 Oct 2015) in my local paper. (Fredericksburg, VA) I'm pictured, showing what I love to do. I feel very rewarded volunteering time for family history. I also enjoy being a member of the Fredericksburg Genealogical Society.
newspaper article link

I also am really excited about the Freedmen's project that is a partnership between FamilySearch and the Smithsonian. Here's a link to more info about that project, including videos and pictures about the collections. http://www.discoverfreedmen.org/media

I helped with a local kick off for Freedmen's project and that was in this Friday's newspaper. (23 Oct 2015)
local Freedmen project in newspaper

Wednesday, October 7, 2015

Are beds essential? An older Virginia divorce case

This is a copy of a blog post I did on my Virginia Genealogy blog:

Awhile ago, I saw some names that looked familiar in the Virginia chancery index (on the LVA website). I went to the Library of Virginia and asked to see the file, because Mecklenburg and Brunswick counties are not digitized yet. The time period was about 1890. The chancery case ended up being a divorce file. In Virginia, divorces were part of chancery records. Back then, women had to "prove" there was adultery or abandonment to be given a divorce.  (My North Carolina divorce cases went before a jury.) Family members and neighbors gave depositions. The case I was reading, was talking about having a bed. It was part of the proof for adultery.  The woman was beat badly and kicked out of her house, so she ran to her father's house. Her husband then moved a mistress into the house. Her father was explaining he was very poor, and that he felt her husband should financially provide for her, because the husband had more money than him... because he could afford a bed. The father had 5 children at home and no bed. I hadn't really thought about life without beds before!

I looked up these family members on the Census, because the names weren't quite matching my family names, yet they were in the same location. It turns out the case was for an African American family, not mine. But I started asking people about beds. Many white families were also very poor in Virginia. After the Confederates lost, it was financially devastating for our state. The majority of people of all races were affected financially, for decades. I also learned that blacks could appeal to chancery courts, even if they were slaves, and they were treated fairly.

Some people told me their grandparents (white) didn't have a bed, with a frame. Maybe a cot by the fireplace. Or maybe like you think of Laura Ingalls Wilder family. You slept up in the loft on stuffed mattresses you made, using sewing material (like ticking) and filling it something like corn husks or straw. Farm hands sometimes slept in barns. People slept on bed rolls, like you might think of cowboys using. But before the Industrial Revolution, in a lot of places like the frontier, it appears beds were a luxury. I heard about one of my families traveling during their move (1920's) from the Chicago area to Winston Salem, NC. They travelled by wagon. They had a tent. They knocked on farmers doors, saying they were passing through. They asked if they could camp on their farm for the night, and maybe have a few ears of corn in exchange for doing farm chores? People respected where farmers planted their crops, and this was a way of hospitality and survival.

I love that there are amazing things technology can do, like keeping in touch with family and friends around the world. But sometimes life can feel so fast paced and just crazy-busy. I love reading and learning about when life was a little slower and simpler. What did people do for fun without electronics and TV? I love the story "Little Men" by Louisa Alcott for that reason. Sometimes we need to re-think what is really essential in our lives, to simplify life a bit. Or to feel gratitude instead of entitlement. I'm grateful I have the luxury of owning a bed for myself and my children!

Thursday, September 10, 2015

Decompressing, without electronics


One of the most difficult things about health problems for me, is when I can't do what I normally like to do to decompress. Doing something other than thinking about the crazy situation you feel stuck in, really helps life feel a bit more do-able. I love to do family history and read to decompress. If I have vision issues with episodes, my kindle still works great! I have the old black and white version with e-ink. It's much easier on my eyes and I can enlarge the font.  Sometimes I just have to wait out the episodes before I can look at electronics. (my phone or computer.) I started looking for other things to do to decompress, and remembered I have always loved puzzles. I asked others what they like to do, that's non-electronic. Puzzles, reading and coloring were the answers given. I found there's a number of "adult coloring books" (meaning not simple for children), many of which say "soothing", or "de-stress". There's lots of cool options like dragons, butterflies, cats, dogs, flowers, city skylines, Japanese scenic scenes...

Sleep issues has been a major challenge for my family for years. Bad enough we've had to ask doctors for help. We recently bought a SAD light, to sit next to the first 10 minutes we're awake. Another very important thing is no electronics that last half hour before bed. (An hour is even better.) I just ordered several color books. So now we have the options of puzzles, color books and books to read before bed. These things make a huge difference with fighting chronic insomnia, better quality sleep and getting into a regular sleep routine. Which also means better health!

When I was little, I always wanted to join the grownups with their puzzles, because I wanted a challenge. When I visited my grandma, we started doing puzzles (or board games) and having hot chocolate until midnight. I felt so grown up and had so much fun with that! My earliest memories doing puzzles, I was asking for old family stories. So I was working on game puzzles and real life puzzles at the same time. I recently met someone on a family history trip, who had a room full of puzzles. He said for years when people wanted to give him Christmas and birthday presents he asked for them to just give him a puzzle. He put a date on the box of when he did the puzzles. Friday nights, he has friends over to visit and do puzzles together and has a table set up just for that. I thought all that was really cool! He sent me home with a puzzle to try. It had two dates on the box. My mom has a really huge dining room table, with not so many of us left at home. During snow days, she pulls out puzzles and uses a section of her table to keep puzzles going.

My parlor is my decompress room. I surrounded myself with stuff I really like. We got more space when we moved and I was thankful I could have a parlor. Its almost just the way I want it. Just going to make the coffee table white again, and put up a much smaller light fixture. Its the first room people see when they come in my house, and where I bring company. If the whole house is falling apart, this is the room I try to keep cleanest and functioning. My cabinet holds board games and puzzles. My husband found a nice small table I loved, perfect for smaller puzzles and games. I love sitting in rocking chairs by the table. A drawing my father in law did of the church in Italy the Cabittos went to for centuries, is beside my couch.  There's also a 3 generation rock collection on the wall, and a shadow box of stuff found at our first house, in a historic area. I did an Alfred Hitchcock puzzle that came with a story, and no picture on the box. When finished, you look at the puzzle for clues. There's no electronics in my parlor. I also have 2 lamps with full spectrum lights, for calmer, softer lighting.

Growing up, I loved stories like those written by Laura Ingalls Wilder, Anne of Green Gables series and Louisa Alcott, especially Jo's Boys. They tell fun adventures despite challenges, that are non-electronic. I do love technology, but often feel bombarded by it. I don't really like TV, my eyes see it as flashing lights. Sometimes I watch movies on my computer while I scan/digitize. But in general, I like electronics limited, and prefer much more of the quieter, slower paced things in life. It helps my life feel calmer, with less drudgery.
What do you to to decompress?

Monday, August 10, 2015

Finding Your Voice


It's been really wonderful to finally stay migraine free! I'm also glad I've been able to ignore my wheelchair, braces and canes for several months. I had hoped maybe this meant I wouldn't need that stuff anymore. But I wasn't holding my breath over it either, knowing full well this was most likely a break. Three weeks ago I was rear ended while at a red stop light. Immediately I remembered every recently recovered herniated disk and started shaking with pain. I took two days off, trying my best "to do nothing" to recover. The pain did go away 2 days later. But all my neuro stuff started coming back with a vengeance. (Except migraines and my fingers being affected. Yeah!) One thing that became a real problem, is that I kept loosing my voice for long periods of time. My vocal cords were affected by the paralysis episodes. Gradually my episodes got worse until Thursday and Friday I needed leg braces and cane again, then Sat and Sunday I was in my wheelchair, paralyzed from mid ribs down. Saturday I could only speak a few words the whole day and that was with me really trying to force out words. So I spent my 40th birthday, (yesterday) in my wheelchair. Did that ruin my day? Surprisingly, no. I still got out to see people. (big accomplishment) I also went to my parents house for my siblings, nieces and nephews to have dinner, cake and ice cream with me. And we played board games. I also got my own violin for my birthday, so I don't need to share with my daughter anymore. About midnight, the episode stopped. I got up to walk around a bit, stretch and take more potassium.

I asked a support group for periodic paralysis if any of them had speech issues. People responded back that they did or had family who had the same problem. This really got me thinking. First thought was, "I need back up plans for non speaking days!" Then I thought about communication in general and its complexities. I remember learning a whole communication program for teaching children with autism to communicate, to help a family member. I once saw a TV show where a lady with autism explained language for her. She didn't start speaking until she was about 17. She heard people talking, but never knew she was supposed to respond to it. For her there was no difference between someone talking to her and the dishwasher running. It was noise that's just there.

When I was 18 I took American Sign language classes (ASL). Soon after, my health started to get crazy so I stopped doing ASL. Interesting though, that when I can't speak, I immediately think of sign language. But then I remember that the people around me don't know sign language. I haven't really signed for 19 years now. But I decided to start back up this month. I'm starting to watch videos, and will practice with a friend. I might start taking formal ASL classes soon too.

Writing is another form of communication. Once several years ago, I had a bad episode and a policeman was close by. He summoned an ambulance. I couldn't speak. They asked me if I needed an interpretor. I gestured that I just needed paper and pen. I wrote the answers to their questions and how to reach my husband... I regularly look for adaptabilty ideas. There are some great blogs, books and websites out there, that have given me lots of ideas.

Music is another form of communication. It is a language too. I was able to start violin lessons back up last week. (My next post will be about that.) I like to take pictures. Partly for preservation or history. The other part is to try to communicate the pictures in my head to others. I learn in pictures, and I often teach using mostly visual formats. Right now, I'm working on improving my 3 other voices: writing, violin and ASL. Thankfully my fingers have not gotten weakened again in the last few months, or I'd have to look for some other ways to communicate.

Love and compassion can be communicated without words too. There's a need for interpreting. I could easily sign for others, even on wheelchair days. I can always hear, I've never lost my hearing during an episode.  So I'm determined to learn how to sign really well. Much of sign language is facial expressions. I also listened to a guy telling his story about recovering from cancer. He said there's healing for your body and healing for your soul. He's a cello player. The cancer center found a cello player who played for him while he got his chemo. He said that helped heal his soul. I dream of playing good enough to do a service like that for someone one day!! I plan to live to be at least 100, so I've got time to learn and get better. It is so important when you have limitations to feel like you can still do worthwhile things that can make a difference. What can you do for language and communication? And how can you show love and compassion, even if you can't speak the words? Finding a way to speak and show the words in actions and deeds is always good.

Friday, July 3, 2015

Journals-very important, variety of ways to do it

          I love journals! I even love to write in them. But I'm not very good at writing in them regularly. It feels like there's always so much other stuff that has to get done, that by the time I sit to write, I fall asleep at my desk. I've tried a variety of things the last two years, because I really want to keep a journal.
          When I was little and there were only 4 kids in my family, my parents spent some time each Sunday afternoon writing in journals they were keeping for each of us 4 kids. Looking back at that old journal, I am reminded of lots of fun things I forgot. It was also funny to read again when my youngest was the same age that I was in those journals.  I could see how similar we were at the same age, and what my parents did to try to work around my stubbornness and feistiness. For Example: When I was 5, I refused to wear pants, even when it was cold. I only liked skirts and dresses. We compromised by me wearing warm tights, and pants under my skirts while I walked to school. When I got to school, I could put the pants in my backpack, and I still had the warm tights on. Mom was happy I stayed warm, and I was happy to be in skirts. Today I own just a few knit pants that I only wear during heavy gardening or painting the house. I do light gardening in a denim skirt and an apron, because I still really do not like pants!

          One day I complained to a friend that I was bummed I really stank at writing in journals. She said she'd call me back soon. When she did, she had copy and pasted parts of  emails I had sent her into a word document, telling what I had been doing, about my kids, a few pictures I sent her etc. The emails had dates, so it looked like a typed journal. And it was multiple pages long for only 3 months of emails! Awhile back before I knew my health problem, I struggled to type with my right hand or see out of my left eye. I worked with my phone, and saw that I could speak into my Android phone, and it would type up what I was saying. I typed up email (Gmail) replies by speaking into my phone. I also started doing journal entries the same way.
New roof after fire May 2008

crane, new roof after fire

          I have always tried to take a few pictures of what we were doing to help me remember, sort of as a picture journal. All my pictures are in date order and have the dates as the prefix for each title. When our house was being rebuilt after our fire, we took pictures showing the progress and cool things we don't see every day, like the rafters of the roof going up by crane.

          Last week I was archiving some older pictures and saw one that surprised me. (above) I had been sewing costumes for a play my kids were in. I also worked backstage helping dress everyone in costumes, and I helped with quick costume changes. I remembered I was struggling with a herniated disk in my neck, and the problems it caused with my right hand. I couldn't feel if I was holding material or not, and I kept dropping things. But I forgot until I saw that picture that I also had a bad fall, the day before the play. I tore ligaments all through half my left hand and had bone bruising from the ring I was wearing bending and being smashed into one knuckle. I looked at that picture and thought, "yes, I do some pretty crazy things!" It also reminded me how determined I get to never quit, or back out of commitments.

          It's easy for people to feel they are aren't doing enough, and feel discouraged. Especially in the middle of poor health. Or we forget we can't move as fast as we did when we were teenagers before health stuff started kicking in. Then there's all these "I should be able to do_____". I've been told with handicaps to just eliminate the word "should" from my vocabulary. I write in my journal about my struggles with these things and try to think of better words than "should". Seeing some type of a journal helps us see how far we've come, and that we really actually do stuff. It reminds us how we got through the tough times. It's hard to remember these things when we're in the middle of crazy stuff/life crises. When our kids become adults and start to go through the same things, it helps to show how you felt going through the same thing. Or when new challenges arise, you can read to remind yourself how you got through previous challenges. I can look back and see I've always been feisty and stubborn, which are good things to have when fighting crazy health stuff.  I've found the best way for me to write by hand in an actual journal, is first thing in the morning, sitting out on my deck, listening to the birds. There will always be messes to clean up. But taking time to write, and letting the rest wait, seems to make the day go a little smoother for me.


Wednesday, June 17, 2015

Trying to balance my life-Periodic Paralysis!

(Update 23 Jul 2015: I have needed more potassium once the weather got much hotter. I've also had success trying several forms of potassium. )
 
Throughout the last 2 years, whenever I had really bad days, I went to read stories or books about people with mobility handicaps. Especially paraplegics, because I often test paralyzed from the waist down. I don't read them to feel sorry for myself, or to convince myself it could be worse. I have only one motive: to look for ideas on how they adapted to life, to see how they accomplish day to day stuff. About 2 months ago on one of my really bad days, I saw a book about periodic paralysis, written by Susan Q. Knittle-Hunter and her husband Calvin Hunter. I was intrigued because my neurologist said 15 years ago my body looked and acted like Periodic Paralysis. It was the first thing my doctor suspected. He was very surprised when my potassium levels and EMG test were normal. So it was dismissed that I didn't have that. But I figured since my body was so similar to it, I might get some ideas. I downloaded the sample onto my kindle. I was so amazed, I knew I wanted to buy a copy! Usually I get my books on Kindle, but this time I wanted a paperback book to write in, notate and easily show my family. The first thing that amazed me, was Susan said many people have normal EMG's and normal potassium levels in between episodes. That was the only two reasons I wasn't diagnosed with it!

I spent a few days reading all I could in the book, on the website, and other websites. I watched videos of people having episodes. Their episodes all looked like mine! I decided I needed to compile some evidence to convince doctors. This is really rare, estimated 1 in 100,000, according to NIH. I thought of 8 ER/hospital visits that my potassium could have been really low, based on symptoms I was now realizing were related to severe K+ (potassium) deficiencies. I got back lab reports on 24 visits. The crazy thing is, my potassium was only checked during 2 hospital visits! My neurologist told me that because I'm considered a "neuro patient" with my complicated migraines, spasticity, mobility issues, had a TIA and probably have petite seizures, that my K+ should always be checked as a standard hospital lab. I created a chart with the date of all labs I had records for, the reason they were asked for, if they checked K+, and the K+ results. Out of 29 labs (during abt 15 years), my potassium was only checked 8 times! Three times by a doctor which K+ was a routine lab for him.  Of the 8 labs, half were low enough to be called hypokalemia (low potassium, 3.5 or lower). I also discovered that the DNA tests from places like Ancestry.com and 23andme have shown genetic mutations on a few known chromosomes for Periodic Paralysis. I ordered a test and recently got my results, showing I do have those same DNA markings. There is a 500$ genetic test, just for Periodic Paralysis, but I wasn't ready for that cost. (not covered by insurance)

My next bit of evidence was to do tracking. I charted how I felt for a month, and which neuro things were affected. I got some liquid ionic potassium, a bunch of avocados and sweet potatoes. (Which are quite high in K+.) The first day tracking, it was my second day of a bad migraine. That migraine caused me felt so sick with vertigo, nausea, my eyes were affected and my whole body ached as if I had the flu.  I saw a post on Susan's face book group. Someone posted the question "how much potassium do you take to fight migraines?" I could not believe this possibility even existed! I immediately ate a whole avocado (abt 975mg) and took 99mg of ionic potassium. Within 10 minutes I could feel my migraine stopping better and faster than any migraine med I'd ever tried! Twice more the symptoms started back up, so twice more I took 99 mg of potassium and ate potassium rich foods. The next morning after I woke up and stretched, my fingers and legs had twice the strength of the day before. Over the next month of testing, going by my feeling of symptoms, I found I averaged 500-600mg of liquid ionic K+, plus an avocado daily (raw, nothing on it, abt 975mg K+), and my neuro stuff stayed away. I could feel stuff start to flare 3-4 times a day, every day. But the symptoms always stopped within minutes of taking the K+. (A recent lab showed I was not taking too much K+, but rather I was finally getting balanced.)

Most of my life I've had severe allergies to many things. Since I was a teenager, if I tried to stop Allegra for more than 2 weeks I got a respiratory infection. I found that the two meds I took lowered K+ levels. I had just spoken to my doctor about stopping them because they didn't seem to be working anymore. He agreed it was safe to stop, so I did. I've also had severe vitamin deficiencies since I was young. I've been taking 10,000 IU of vitamin D3 daily but could not get above 25! I got several labs over the last 4 years to make sure I wasn't taking too much D.  I just kept showing up deficient in D as well as several other vitamins and minerals. I saw a gastro doctor who specialized in nutrition. She said my vitamin issues were much more than being celiac. Especially because I never cheated, and it's been over 5 years of no gluten in my system. She apologized for not being able to find the source of the absorption problem.

I recently saw my neurologist. I showed my lab summary sheet. He was amazed at my drastic improvement in only one month, that I stayed so well for a month and I went a whole month without migraines, a record for me! He ordered a slew of labs. He wanted to double check I was staying in safe range for K+ and not going high. My K+ was normal, and for the first time ever all my labs showed normal range, no deficiencies except B12! I was only taking magnesium, D and K+ at the time of the lab. (No other meds or supplements, taken for one month.) So for now it is believed by my doctor and I that I do have this. I meet all the criteria for it. My doctor said if I continue for another 6 months like this, and/or my DNA rest shows mutations for it, then I will have an official diagnosis. I'm feeling better than I have in over 20 years! My muscle weakness is almost completely gone. My finger tips have feeling in them again so I can get back to learning to play the violin. Pollens that normally do me in are out with a vengeance but my body doesn't seem to notice. My neuro vision problems are gone. All my neuro stuff has stopped. All my health problems have stopped for a month and a half now. (Except I know I am still celiac and can't eat a few foods for the rest of my life, and I'm good with that.) I never expected to feel this great! I don't feel handicapped anymore. And I am ready for adventures!

Periodic Paralysis is genetic. I think it just started with me. No one else in my family has had my crazy stuff. It's an ionic chanelopothy. My body does not process K+ correctly. When the potassium shifts, my muscles weaken or go paralyzed along with other neuro problems. When the K+ levels in my body gets corrected, (by supplying more K+) then the symptoms/problems stop. There are several variations of Periodic Paralysis. Some versions are symptoms with K+ getting too high. I've told my doctors for 15 years it's like a light switch being flipped on and off. One minute I can walk and the next I cannot. A lot of doctors have tested me and been amazed that one minute I have reflexes and the next I do not, until that episode ends. Now I know that "light switch" is potassium. I do feel the chemical shifts in my body when I get the right amount of potassium. It feels weird. I read that I have 50% chance of passing this on to my kids. I started symptoms when I was 18, with two episodes as a teenager. I'll be 40 in 2 months.  I'm glad I know now, to prevent my children from going through what I did.

I'm really thankful I found Susan's book! She has a book and workbook. I bought both and have been thrilled with how much I am learning from them. I'm thankful she has taken her experiences and tries to create awareness for this problem.  Yes I did the work, but I got the idea to ask for a re-evaluation from reading what Susan has written/writes. I am writing this post in case it helps to add awareness, because so little info is out there, even for specialists. Here is the book I bought, and the website with it that helped improve my life a lot! 
 book: http://www.amazon.com/gp/product/1484062248?psc=1&redirect=true&ref_=oh_aui_detailpage_o01_s00
website: http://www.periodicparalysisnetwork.com/index.htm

It is literally all about balancing for me!

Saturday, March 28, 2015

Perspective during our health crises

 When crises happens in my life, we revert back to the bare minimum: rest, nourishment and trying to recover. About a month ago I was on my way to see my neurologist for complications I was having, when all of a sudden I was hit with a norovirus. Thankfully I wasn't driving. When I felt temporarily stable, I got back home and camped in my bathroom, the sickest I've ever been in my life, for several days.  Everything was cancelled, everything had to wait. Sometimes we just have to do that in life.

Sometimes when I have bad handicap days, I try to find stories about other wheelchairs users. I want to learn how they got through their crises time and how they adapted their homes. One amazing fact (to me) is that most who become paralyzed have about a year recovery.  That's just the bare minimum basics, with most of that time being in hospitals.When I read others stories, it reminds me I need to be more patient learning new skills, and taking more time to rest and recover.

I read a story yesterday I found really inspiring I wanted to share, about Michael Graves. He's known for a lot of his household designs at Target. I bought some things he designed for Target. I saw an article that said Michael Graves was also known for Universal Design which is a subject I'm really interested in! Many people go buy a house, and then by the time it's paid for, they can't live physically in it anymore! They're older, and can't do stairs. They have knee problems, use walkers etc. Universal Design is the idea that you buy a house and it works with you young and old. It's handicap accessible but beautiful, not looking institutionalized. As I read this article I learned something that amazed me. It said Michael Graves got a viral infection at age 68, that left him paralyzed, needing a wheelchair. His perspective: he said he thought his paralysis made him a better designer! He designed the Wounded Warrior homes at Ft. Belvior. I saw those last year and thought they were beautiful homes. I'm truly happy our veterans can have something nice to recover in. I have a lot of veterans in my family, so this is very important to me. He also designed a better, more comfortable transport wheelchair for hospitals. The article also says Graves was in a hospital for two years recovering, and asked, "who want's to recover in a room that's beige?" I can so relate!!
Here's the article: http://www.mnn.com/lifestyle/arts-culture/blogs/the-lasting-legacy-of-universal-design-champion-michael-graves
I love that Michael Graves, put his knowledge and perspective to good use to help others!!

Addendum: Mr. Graves just recently passed away. I'm thankful for his contributions and awareness for accessibility, functionality and also the need for things to be beautiful. Here's a TedMed Talk he did in 2011 about his hospital stay and why he felt rehabs needed to be re-done. https://www.youtube.com/watch?v=_fiEB3Ktzj8

Friday, January 30, 2015

When life feels loud, do you have a quiet corner to decompress in? Indoors and outdoors?

Sometimes things get really loud literally, and sometimes they just feel really loud, because I get sensory overload. When I don't feel well, I've always craved a quiet little corner to recover in. Where no electronics can get to me, for a little while. Then after my little break, I feel more ready to get back to my responsibilities again.

When I was little, my parents used to find me with my bed sheets draped like a tent and I held a flashlight reading mysteries. In Japan it rained a lot, but I liked to be outside. So I often carried multiple umbrellas to build forts, including to read under my little umbrella fort.

I have two new favorite places at my new house. I still read on my bed when it's a bad day, because then I'm still able to have adventures instead of thinking about feeling sick. (No electronics in my room). An indoor corner is good for me in case of bad weather or bad limitations day. But getting outside is so much better. So I've always tried to find a corner indoors and outdoors. This picture taken from my back door is the first corner I set up. In the summer it's very shady. In the winter it's very sunny, and it has a peaceful view. My deck has potted herbs along the wall, so even if I'm not very mobile, I can still have a little taste of quiet and the outdoors to decompress some. The deck overlooks a hill and small creek. If I cross the little bridge over the creek, there is my favorite place (2nd place) for if I have a good walking day. It's under a big, low growing tree, surrounded on two sides by a thicket. I can sit in that corner, on a blanket, real still, and see tons of birds and squirrels running across the branches in front of me and overhead. Sometimes butterflies flutter around and bunnies hop by too.

I love efficiency! I even love my laptop. It may seem sitting still and taking breaks from electronics is inefficient, but I truly believe everyone needs unplugged time to recover. It depends on your day, demands, etc how much down time we each need. Most people feel the crunch more in December or at final exams. I find spending quiet time in a little corner of nature helps me work and think more efficiently. If I don't take the time, I'm just going to waste the time fighting migraines and everything else that comes from not resting enough. Looking at birds and trees is much more pleasant! Have you found a quiet corner outdoors for you yet?

Tuesday, January 6, 2015

Instead of New Year's Resolutions, how about making a lits of your needs?

picture I took of strawberries I picked at farm
One good thing crazy health does, is it causes you to really think about what's truly important and what your needs actually are. When I have a day that everything seems to spin out of control, I try to stop, and just take care of my needs. Whatever is scheduled, I call people and apologize to explain that I have to have a "shut down day to recover." Often that means no electronics for the rest of the day, minimal lights, nourishing food, drinking lots of water, a good book to loose myself in, and a good night rest. It helps me recover much quicker. By the next day I can try again.Yes I do have children and have done this since they were little. They stayed close by and helped me keep everything a little quieter and a little darker during the migraines until my husband could get home. They really understood.

Unfortunately my bad days are happening more often and get more severe. So what to do next? Other friends have asked me the same questions. The next thing I did was make sure I didn't schedule more than one thing per day. So if I had to cancel, I never had to make more than one phone call. Also, now each person is aware of my health, and that it is unpredictable, so I feel less guilty canceling last minute. I'm also always looking for ways to simplify things!

Another thing I've been doing for awhile is reading autobiographies of people with MS, polio, and wheelchair users (especially paraplegics), trying to see how they adapted to their new life changes. Unfortunately most the stuff I really want to know it seems they learned in rehabilitation centers and with occupational therapists from an injury. So I'll just have to keep learning it hand's on I guess. But it does help to know I feel the way so many others feel. I read one book this month I especially liked. About MS and feelings. There's books about the clinical, medical part, but not the emotions of how to deal with a chronic disease. This book amazingly does that. I'm in no way associated with the author or publisher. I just found it helpful and really well done. If interested, here it is on Amazon: MS & Your Feelings by: Allison Shadday 

to help me in kitchen
Instead of looking for new things to do for the New Year, I'm thinking about what we really truly need, actually making a list of it, then addressing them the best that we can. Just the basics are hard enough for me some days! When you have bad handicap days, you think even more literal and simple. Like: I need food (that I'm not allergic to), sleep, and to go to the bathroom. (And shower or bath as soon as I'm strong enough, usually the next day.) Walking across the room is nice and independent, but isn't necessarily essential. If the bathroom is across the room, getting across the room is then a need. But if your legs don't work, then you start to think creatively. What obstacles prevent you from getting across the room? How much does it cost to remove those obstacles? If you had a wheelchair could you get through the door to food? How far to food? Same floor or does a flight of stairs impede you? One obstacle I've had with food is that my hands and feet aren't working so well. So I keep dropping everything. If I want to make a salad, that's a lot of things to get out and the potential to drop a lot of things (including a knife and cutting board). I found my solution by this little cart from Ikea. http://www.ikea.com/us/en/catalog/products/30216536/  So now I load everything I need into this cart & push it to my dining room table to work. It's light weight. I can either push it walking in my braces, or push it in my wheelchair. It's safer, efficient, no tripping over what I drop, and much less frustrating!

Maybe your needs aren't literally trying to walk. Maybe you want to go for daily walks for exercise. Maybe your need is to have a good night sleep regularly. Or to have more time with family. Or to eat healthier, less take out in your car. Or to commute less. Or to be in a different house that meets your health needs better, or a house that you can afford better. Or to walk into a roomful of people and not feel anxiety. Some things may seem like wants, but if they affect you physically and emotionally, and if they affect you daily, I think it's safe to say you may want to re-examine that as a need. If we make sure especially on our bad days, all the needs are being addressed, that will make 2015 a much better year for us!
Happy New Year!