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
Monday, April 3, 2017
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
|Me on a visit to Richmond, VA-Mar 2017|
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
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
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.
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:
Monday, December 26, 2016
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
- 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.
- 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?
- 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.)
- 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.
- What things can I do when I need to decompress?
- 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?
- What stuff am I good at, that I can still do when my body wants to shut down?
- What stuff am I feeling guilty about?
- 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.
- If I only had energy for one responsibility today, what would I do?
- 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.
- How else could I do this same thing? Ex: bad hand day adaptions, order online if grocery shopping is too tiring, etc.
- Is this thing or idea worth my limited energy?
- 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...
- 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.