Sunday, March 27, 2011

POTS on the Prairie

I visited the eye doctor on Friday and the good news is I have healthy eyes. The yucky news is that my vision issues are caused by my lack of oxygen from POTS, and there's really nothing that can be done about it. I've been trying to come up with some positive solutions to my recent struggle with my vision. Simple solutions like frequent changes in the kinds of things I do, such as computer time, TV time, reading and plain old fashion busy work. But there have also been some high tech answers as well. My e-reader has a font size option so I can make the words a bit easier to read (though the problem seems to be with time reading and not the size of font). I can even download audio books on my new high tech phone!

Thinking about these new high tech answers to my problems made me realize how good it is to have been diagnosed with POTS in 2008. There are medicines that help enormously, there are watches and phones to help monitor my heart, I have a computer to learn more about my condition and then there's Facebook to bring me together with other POTSies and remind me I'm not alone dealing with this. I can only imagine what it must have been like to get POTS 200 years ago. My imagination takes me to a southern plantation. I'm laying on a fainting couch fanning myself complaining of having the vapors as all my friends and family watch in dismay. But I figure with my luck I'd end up on a prairie in the middle of nowhere too sick to milk the cow or feed the chickens. I couldn't wash the clothes with a wash board in the creek and I definitely couldn't pluck a chicken if my life depended on it. I would be lucky to see a doctor and there wouldn't be treatment options. The chances of survival would probably be slim.

The diagnosis for dysautonomia has only been around for about 20 years. Dysautonomia is still a mystery to doctors around the world, but there's allot of research being done. I often complain of the doctors lack of knowledge, the lack of treatment and the feeling of being a guinea pig for this disease. Well the truth is treating dysautonomia is not perfected yet and I AM a guinea pig. My prayer is that being a guinea pig is going to make things better for my children and their children (since there has been a link to this being genetic). Having POTS blows big time chunks, but I'd rather have it now than 200 years ago. My life with this POTSy body here on earth is a teeny tiny fraction of eternity with a new body that Christ has promised me. I need to learn to live with this challenge and try to see what God wants me to do with the life He has given me.

Inspired,
Michele

Revelations 21:4-5
4 and He shall wipe away every tear from their eyes; and there shall no longer be any death; there shall no loner be any mourning, or crying, or pain; the first things have passed away." 5 And He who sits on the throne said, "Behold, I am making all things new." And He said, "Write, for these words are faithful and true."

Tuesday, March 22, 2011

What to Blame?

I'm writing this unable to read what I'm writing or really able to check my errors. So please excuse any flubs I may miss on this page. My reading vision this week has become quite blurry, I can only read for very short periods of time, and my eyes and head hurt when I try to focus on anything longer than a sentence. I have tried my reading glasses, but there is no improvement. This new development is cramping my life style. I love to read and really enjoy writing my blog.

Trying to pinpoint the cause of this new symptom in my health has become difficult. Is this a new POTS symptom or just some "normal" health issue. Since I've been diagnosed with POTS almost three years ago ten out of every ten new symptom that has mysteriously popped up has been linked to POTS. It's only natural that when something new comes up my first thought is "oh great another POTS symptom!". And if I'm being completely honest with myself this new symptom seems to feel connected with feeling like I'm constantly lacking oxygen. I'm always feeling dizzy and tingly on my lips, nose, scalp and tongue.


Struggling with reading is very irritating! I am an avid reader, I prefer reading over TV. I'm not able to enjoy my favorite past time either, chatting with my friends on Facebook. Reading more than a few status post gives me a headache and I feel extremely guilty not responding to my friends. I can hear the shouts of "bad friend" in my head, but true friends will understand. I am really thankful that I teach kindergarten since all the print is super-de-duper large, it hasn't really taken an effect on my teaching ability.

I so have a tendency to ignore many of my symptoms. I've learned to just accept them and move on, but my vision and ability to read is something I refuse to ignore. I'm hoping I'm wrong about it being a POTS symptom and my vision issues are just a sign of my "normal" aging. Maybe the real Gurtie is looking my way and I'm really getting old (God forbid!). I'll find out for sure on Friday during my appointment with my optometrist.

Maybe just Gurtie,

Saturday, March 12, 2011

Droids and Apps

Last week my wireless phone mysteriously disappeared. After making a painstakingly thorough search of my classroom I can only conclude that my phone was abducted by aliens! I spent several days hoping that maybe one of my kindergartners would return it or maybe the aliens would beam me down a newer improved phone, but neither was the case. I purchased this phone nearly three years ago so that I could use the amazing new technological ability to view my e-mail from my phone! I loved my phone and I'm not one who needs the latest in technology. I would have kept my phone for another 3 years if it didn't mysteriously disappear.

So after being phone less for several days, I finally decide I need to get a new phone. Now I need to make a decision. Do I make the smart financial choice of getting a phone similar to what I have or be financially irresponsible and get one that has the latest technology for the month (because we all know that that there will be something better out there next month). So I make the irresponsible choice and decide on the newest most advanced model for the month. Now to decide on a phone. I usually spend hours if not days researching the pros and cons of any large financial purchase, but this middle aged technologically challenged woman would probable need to purchase and read "Technology for Dummy's" before I could decipher the terminology in the phone reviews. So I decided to contact an expert, my 24 year old son.

I call my son and ask him for his recommendation. He begins by asking me what I need in a phone. I tell him it needs to have a keyboard. The line is silent and then he tells me they all have keyboards what kind do I want? Now my end of the line is silent. So my son realizes that I'm clueless and gives me some options. He asks, "What else do you want?" I answer, "I heard from a POTSy friend that there's a phone that has a heart monitor." My son begins rattling off names, Droid 2, Droid X, Galaxy S and iphone 4. Being a Star Trek fan I zero in on the Droid because it sounds like a Borg, and who doesn't want a Borg in your purse, that's what I'd like to know! My son continues to list the many pros and cons to each phone and tells me to call him at the store if I have any questions.

As I'm driving to the store I begin to fantasize about how wonderful it will be to have my very own Droid. Aren't droids kind of like robots that do everything for you? Maybe this disappearing phone thing is a blessing in disguise! So I walk into the store with my list of phones and I am approached by "happy salesman". He asks me if I need help and I hand him my list and he now appears to be "very happy salesman". "Very happy salesman" begins rattling off features and I give him the deer in the headlights look. He decides to change his approach and asks me "what are you looking for in a phone?" I tell him "a keyboard that's sensitive to numb fingers that also has a heart rate monitor." Now he has the deer in the headlights look and tells me he'll be right back. When "happy salesman" returns he directs me to the Droid and he begins playing with it. He smiles and says "cool, I found the heart rate app", and he shows me how it works and I'm sold. "Very happy salesman" rings up my purchase and hands me a piece of paper with a list of a half dozen cool apps that are his favorite and then wishes me a great evening. As I walk out the door with my new handy dandy Droid, I'm thinking "Stupid, stupid, stupid, you really can't afford this phone!" But I walk out the door anyway.

My son gets home and immediately begins playing with my new phone, rattling quick directions on how to use it. We check out the new heart rate app, he adds himself and his sister to my contacts and leaves me alone with the phone. Having no idea what he just showed me, I toss the phone in my purse and forget about it till the next evening when my son asks "Are you having fun with your new phone?" I tell him "I haven't looked at it since yesterday." and he shakes his head in disappointment and walks away. I'm sure if I put in a tenth of the energy I put into my classroom I would have this new phone and all its apps down. Who knows I might even find some apps that would actually make my life easier. Or maybe I should read the manual that came with the phone, I'd probably learn a thing or two, but does anyone really read those things?

So I have this cool new phone that has hundreds of apps that I don't know how to use. I can't call anyone because I lost all my contacts in my old phone because who uses a phone book anymore? Even if I did have a phone book, I wouldn't know how to input them anyway. On the positive side I do know how to use the heart rate monitor which is way cooler than my ugly watch!

I'm sure my old phone will reappear at the end of the school year. I'll probably find it in someones desk stuck to the bottom next to an open bottle of white glue and a rotten peanut butter sandwich.

Technologically challenged (I'm sure there's an app for that),
Michele

Proverbs 1:7
The fear of the Lord is the beginning of knowledge:
Fools despise wisdom and instruction.

Wednesday, March 9, 2011

Ode to Compression Stockings II Energy zappers

I had another bazaar compression stocking morning. Getting those things on cracks me up and then my laughing just zaps more energy. I've been wearing the knee high stockings daily and have gotten the hang of putting those things on with very little effort. Yesterday morning I decided to wear a dress, so waist high stockings were a must.

So I've done all needed preparation for getting on these insanely difficult stockings. They're inside out as my sales lady instructed. I'm in the center of my bed to buffer any falling over. I've had my breakfast and my coffee to provide much needed energy. I've laid them out flat and straight, stocking toes facing my toes so that they don't get twisted up while putting them on. And finally I've done very little energy zapping activities in the last thirty minutes to ensure that I'm completely energized for this what looks like simple task.

So I've squeezed my rather slender legs in what feels like the casing of an Oscar Mayer Wiener. While doing so I've experienced the typical fall overs during the struggle. I'm also giggling to the point of tears and I'm exhausted. I definitely used up all my spoons on this simple act. I think next time I plan on putting these stockings on I'll make sure that I'm supplied with some extra energy. Maybe I can use my phone charger and suck on the end of the power cord or maybe an IV infused with a Monster drink would do the trick. There's got to be a better way of doing this. And before you inform me of the wonderful handy dandy gadgets out there for putting on my energy zapping hose, I know, I know they're out there. I'm just technically challenged. I still don't know how to use my tv remote or the space saving storage bags that attach to my vacuum cleaner. So I'm not adding one more divice that will get stuffed in my cupboard collecting dust.

Who would have ever thought putting on hose could make me laugh so hard (though it could be hysteria). Thanks POTS for another laugh!

Inspired to laugh,
Michele

Ecclesiastes 3:1-4
1 There is an appointed time for everything. And there is a time for every event under heaven.-
2 A time to give birth, and a time to die;
A time to plant, and a time to uproot what is planted.
3 A time to kill, and a time to heal;
A time to tear down and a time to build up.
4 A time to weep and a time to laugh;
A time to mourn, and a time to dance.

I like to try to keep my time equally balanced.
Though I do hope the whole killing thing is about killing bugs and animals for food. Because if not, I have not found a time for that yet!

Saturday, March 5, 2011

Magic Eight Ball

Last night I decided to step out into the wild side a bit and take a chance at an evening out with friends and colleagues. One of my favorite teacher friends was having a jewelry party and I was craving for some form of a "normal" social life. She was kind enough to find some understanding colleagues to give me a ride to her house, and I couldn't wait to actually be doing something "normal" for a change. As the night drew closer, I was beginning to listen to those shouts of doubt that were screaming in the back of my head "What if your body can't handle it?" and "Please don't let me crash in front of these people." I decided to ignore those pesty voices in my head not worry about what might or could happen.

On the night of the party my body seemed to be pretty cooperative, but my brain was on brain fog mode. I couldn't seem to compose a single sentence without a pause... or an "um" or "uh" in the middle. I seemed to be a little more self conscious of my inability to make intellectual conversation with these ladies from the world of academia. I know that these ladies don't have a mean bone in their bodies, but my past experience with a mean judgemental teacher I worked with several years ago always seems to creep into the shadows of my thoughts. As I was sitting there becoming more frustrated with myself I began to wish for a remedy to my problem. Poof, I discover the solution! I need to switch out my brain with a Magic 8 Ball. If someone asks me a question I could just tilt my head to the side and the little triangle answer would pop up on a glass panel on my forehead. Here's how a conversation might go.

Jane: "Michele, do you think the union protests in Wisconsin will be successful?"
Michele: Head tilt "As I see it yes."
Jane: "Do you think our district will be sending out allot of pink slips this month?"
Michele: Head tilt "Outlook not so good."
Jane: "Are you expecting to get a pink slip?"
Michele: "My sources say no."

Conversations would be a whole lot easier with a Magic 8 Ball in my head. Even with my many brain fog moments, I had a great time! Nothing like great friends, great food and some really beautiful jewelry to fill an evening. It was nice to get out and have a "normal" evening out. I'll have to do it again real soon,

"Outlook good!",
Michele

James 1:19
This you know, my beloved brethren. But let every one be quick to hear, slow to speak and slow to anger.

Monday, February 14, 2011

Rose Colored Glasses

My former husband use to tell me I needed to take off my rose colored glasses and take a good look at the real world I'm living in. I'm thankful at the time that I liked how I saw the world and that he only saw the world in black and gray. I realized I wasn't the one with the problem and the sad thing is that his negativity was the real issue. Now don't get me wrong I am not stumbling through life pretending things are not the way they are! Believe me when I say that I've felt the pain life has dished out for me. I just choose not to relish in it too long. Rose is such a joyful color, why not paint my world with joy instead of darkness.

Growing up I had a difficult childhood. But when the pain of living in a dark scary world was getting me down, I always looked for the beauty in the world around me to bring joy in my life. It didn't take much; an Autumn leaf, a bird perched on a tree or my favorite iris bush that seemed to bloom all year around just for me on my way to school. I am so glad I picked up this coping skill at such an early age because it has definitely made a difference in how I deal with dysautonomia.

They say laughter is the best medicine, I'm convinced it's true in my case. I wake up in the morning giggling at the decision I need to make first thing as I sit up in bed. Do I drink the 16 oz glass of water my parched body requires to start my day or run to the restroom before I have an accident. The giggling usually doesn't help the situation. After I drink the ginormous glass of water, I make a run to the toilet only to find myself running into walls because of the lack of blood to my head. So I sing to myself "What do you do with a drunken sailor". I begin to giggle and almost lose it at the door. I head for the kitchen to make breakfast that I force myself to eat. The nausea is overwhelming every morning, but I have a song for that too, "It's not easy being green!" with a visual of Kermit the frog singing to me. I have to admit that the extreme fatigue and body aches are a bit more of a challenge to laugh at or see a positive side to, but I do imagine I must look quite odd constantly moving around and shaking my limbs to keep my blood flowing to my extremities. Sometimes I imagine myself looking like Lerch form the Adam's Family with my arms bent at the elbows and my hands in the air. I often think I'm in an "I Love Lucy" episode as I try putting on my compression stockings and fall over every time. My hands and feet are a rainbow of color and pattern and I do still marvel at their uniqueness. And if all else fails I can still look out my window because there's always something amazing to see out there to cheer me up.

I'm not saying I'm always laughing and cheerful, I have those days that are harder than others. I just choose to be a glass half full kind of girl. The world is a much nicer place when everything around you is pink!

Inspired,
Michele

Romans 15:13
Now may the God of hope fill you with all joy and peace in believing that you may abound in hope by the power of the Holy Spirit.

Friday, January 28, 2011

Ode to Compression Stockings

Oh how I love thee compression stockings.
I compare thy hug to a size 8 woman trying to squeeze into a size 2 jean.
Your tight embrace compels my feet to do an Irish jig,
and your firm squeeze sends a burst of energy that gets me through my day!
I will loveth thee all the days of my life!

I was told over a year ago to purchase compression stockings to help with my pooling and circulation issues. The first time the doctor mentioned it to me waves of horror sent shivers down my spine with the thought of wearing something so ugly and lacking of style. By the second visit and second recommendation to purchase the stockings I thought I should be a good patient and give them a try. I went on line to check them out and my jaw hit the floor at the price of one pair of stockings. I could buy a cute pair of fine Italian leather shoes for the price of one pair of UGLY stockings! I'm NOT going to spend that much money on a pair of socks! So being the cheapskate that I am I went to my local drugstore and bought a pair of cheap ones that cost less than $10.00, and headed for my favorite shoe salesman at Nordtroms for a nice pair of peep toed flats. I put on the cheap compression stockings and I couldn't tell the difference between them and my normal socks except for the fact that the compression stockings cut off my circulation below the knees.

One year later and I'm with a new neuro and he also recommends the compression stockings. I cheerfully tell him they don't work and we move on to other more important issues. Three months later and the dreaded subject of compression stockings is brought up again! I'm beginning to wonder if maybe there might actually be something to these compression stockings and sheepishly bring up the fact that the stockings I tried were very cheap. I told the doctor that compression stockings are very expensive and if he might write me a prescription for them, and he agrees! I'm still not completely sold on the stockings idea and hold on to the prescription. A week later my legs are in more pain than I've ever experienced. The pain and discomfort is so bad that I'm beginning to wonder if I can continue to work with this much pain. I finally decide the compression stockings may be my last option. My former husband may have been right about one thing, I am a stubborn German!

With prescription in hand I head to my local medical supply store and hand them my prescription. I'm told to have a seat and someone would be with me shortly for a fitting. A FITTING! I look at the guy and say "Excuse me, I'm just here for compression stockings, not crutches or anything like that!" He smiles and says I need to be fitted which is normal procedure for compression stockings." I sit down and wait, and within minutes a lady with a tape measure begins measuring various parts of my legs. She hands me one pair of thigh high stockings in my desired color, and she asks me if I know how to put on compression stockings? I give her a "are you kidding me look" and she takes that as a "no" and begins giving me a "lesson" on putting on compression stockings. In my head I'm thinking sock are socks, I should be able to handle it. But I have nothing better to do with my time so I actually take note of the key points to her lesson. I'm thinking one pair of stockings are not going to get me through a week of working. I mention my concern and she directs me to the calf high section and I chose a pair of navy socks to wear with my jeans. I'm thinking the insurance company will pay for the thigh high and I'll pay for the other pair. We head for the cash register and she announce the total, almost a hundred dollars! I mention the prescription and she explains that the insurance companies will not pay for compression stockings because they are considered cosmetic. I explain that I have orthostatic intolerance and that it's definitely not for cosmetic reasons. She says sorry but they have NEVER been covered by the insurance companies. I'm thinking "seriously, who would want to purchase a pair of these ugly things for appearances sake!". I end up charging them and head out the door.

The next morning I take my lovely knee highs out of the box. I attempt to put them on and soon find that the traditional way is not going to work. It's 6 am and my brain is still on defog mode. What did the lady say to do....tick.....tick.....tick, hmmm, something about turning them inside out, not sure why. I turn them inside out and can't get them over my toes and up my foot. I keep trying and end up falling over backwards. As I lay there I'm thankful I attempted this on the bed. But now I've got to get myself up which is never an easy task for me. I'm back in my sitting position and make another attempt to get these "special" socks on. After 5 minutes I get the first sock on, woohoo! Now I'm tired and I still have one more sock to put on. As I hold up my second sock my arms are shaking but the experience with the first sock makes it a bit easier to get the second one on. As I sat there on my bed recouping from putting on my stockings I'm thinking the time and energy spent putting on these stockings are probably not going to be worth any results I may get from these things and that I probably just waisted a chunk of money.

I'm in the parking lot at work and the walk to my classroom is probably the most difficult walk of the day, so off I head for my classroom. I notice the difference immediately. I feel like I have more of a spring to my step, hmmm this is good. I get through my first hour of teaching and I feel pretty good as far as my legs are concerned. By the end of the day I'm feeling not an ounce of pain or fatigue that usually plague me at that time and I'm ecstatic! I head for the parking lot and notice I still have a glint of the spring in my step from earlier in the morning and I'm smiling from ear to ear.

I get home and go on line and order four more pair of stockings and find out that there's quite a discount on line and in larger quantity purchases. I love these things so much that I begin to envision how I'm going to incorporate my stockings into my summer wardrobe. Maybe I could begin a fashion trend of wearing compression stockings with shorts and skirts! The next days unseasonably warm weather put a quick halt to wearing compression stockings in the heat. My feet felt like they were doing hard labor in a sweat shop in those things.

If you've been putting off purchasing compression stockings for vanity reasons or costs. I will tell you that they are worth more than all my designer shoes in my closet. I'm kind of like that guy in the DR Seuss book Green Eggs and Ham I will not eat green eggs and Ham, I will not try them Sam I am or in my case I will not try compression stockings, I will not wear them doc I am! After my first day,
I will wear them on a train and on a boat and in the rain!
I will wear them in a tree, they are so go, so good you see!
I will wear them here and there, I will wear them anywhere!

Inspired,
Michele

Proverbs 1:5 A wise man will hear and increase in learning. And a man of understanding will acquire wise counsel.