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.

Tuesday, April 18, 2017

Discovering I Have Other Relatives That Sign ASL

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

Monday, April 3, 2017

Public transportation, tips in a wheelchair

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

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


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

Sunday, March 26, 2017

Current projects for blog posts

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

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

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

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

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

Friday, February 24, 2017

Exercising- Working Through My Muscle Issues



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

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

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



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


Monday, January 23, 2017

Making Big Goals, Despite Health Challenges

How do you make goals without health problems derailing good intentions? I want to do so many things. My mind has it all figured out, but usually my body usually says "no way!" So frustrating and annoying! When I have bad days, I plan all the stuff I'm going to do the second I feel better. Then I wear myself out and start over. Obviously that's not been working, for years, but I get impatient and try to squeeze in as much as possible on "good days". How do you plan realistically, so later you don't beat yourself up for not getting to half the plans? And what do you do when plan A,B, ....Z, aa, bb...they all fail?

ASL has been my dream for years! I finally realized waiting for my life to calm down, just wasn't ever going to happen. I needed to carve a space into my schedule and make it happen! Saying "I want to do sign language" didn't really get me anywhere. I wanted to do ASL for 20 years, but  nothing happened from just wanting it or wishing for it. I wrote down why I wanted to do it. I wrote down what my obstacles were. I pondered what (or how) I needed to overcome these obstacles. Once I knew all that, I knew I could just go for it! My biggest obstacles were: 1) Time, 2) too many bad health days, 3) transportation.

I wasn't balancing the electrolyte chloride. Because I didn't know how. Very little is known or written about chloride deficiencies. Once I figured out how my body responded to chloride, I had less bad health days, much shorter episodes, which meant I now had more time to do things I loved. 2 of my 3 obstacles were addressed. As I kept having long episodes involving my voice this past year, I started thinking much more about ASL; like how much I missed it, that I need it to help with communication now too. I thought about why I started, why I loved it so much. That it had kind of eaten at me, this disappointment that I quit, and wasn't getting better enough to dive into a big thing. Thought about why I quit (crazy health), so there wouldn't be a repeat when I tried again. I don't always feel my fingers, but I figured plenty of people sign with muscle issues. Then I wondered, "Why not?! Why can't I take a class?" There had to be a way, and I decided to find it. I also decided that when I started up this time, this was a for the rest of my life commitment. I started thinking about logistics to make my new goal of ASL happen. I examined everything I did each day and decided if I should continue it (or not) and how much time I wanted to spend doing each thing. I've worked hard at setting good, realistic goals. Really had to think about what was truly doable with my body. (I was also making exercise goals during this same planning session.)

I started out small, while I worked on creating my goals and plan. I watched videos and tried different times of day to practice, to test what worked best. I found two sets of free You-Tube videos I really enjoyed and found helpful. One was Bill Vicars with LifePrint; The other was Rochelle Barlow doing ASL in 31 Days. I also decided (at least to start) that I just wanted to be good at being conversational in ASL. Work on gaining vocabulary and learning good ASL grammar-sentence structure. Which meant I didn't need to go the college certification route right now. Not being able to drive makes that route not possible right now. Rochelle offered what seemed the perfect solution for me. She designed a class on-line for people with crazy schedules. (everyone right?) The idea was to spend 5 minutes a day, and over time you build vocabulary and skills. Watch a video then work on flash cards that went with the videos. My third obstacle addressed! My husband encouraged me and told me he really wanted me to do this for myself, so I signed up. Family support is so helpful! First class in 22 years, but I finally did it! I was so happy and proud of myself! (Personal side note: My husband remembers how much I loved ASL when we first met. He actually drove me to all my classes because I didn't have my drivers license yet. He also let me practice my signing assignments with him, because I needed a friendly audience. These things were actually  a big part of me realizing I wanted to marry him. He supported me with my dreams and helped me get there. -Literally and figuratively)

I've met my ASL goals for 4 months now, so I did make a good plan for me after all. Hooray! I think if we don't think it through, and create a very specific plan (like schedule a set time for practice), we're less likely to stick with it long term. Whenever something takes a lot of work, I'm realizing I do need to remember why I do things, to know that it's worth the effort, when things get hard. And if I get sick or have a bad muscle day, then I have to let it go, give myself a sick day to recover. I know I can try again the next day, and its really OK, because I know I'm trying my best. Many people have talents but then they drop them when they finish school, have big health challenges, or start having children. Our talents can help other people (including our family), while at the same time they can help us. Things like painting, playing an instrument, singing, playing sports, can help us by decompressing or just the happiness of doing something we love and enjoy. If you're disappointed you stopped working on a talent you loved, do you know your obstacles? It took me 9 months to realize chloride deficiency was my biggest obstacle and know what to do about that. If you feel stuck, can you try smaller increments of time? 5 minutes a day? Or just one day a week? Do you have a friend who wants to try the same goal with you?... I'm really glad ASL is back in my life again.


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If interested, here was the solution to my scheduling and transportation challenges. I get no compensation for this. I just think she's awesome and fun, so wanted to share. I have worked on  Rochelle Barlow's classes of: ASL in 31 Days, ASL in 5, ASL Done Right vol 1, and this week started ASL Done right 2, which includes Foundations lessons. http://www.asldoneright.com/  Here's a video example: