A Pirate A Day Keeps the Chronic Illness at Bay!

In costume in front of The Black Pearl Shop this summer

On Sunday I enjoyed one of the purely amazing happenings of summer: The Renaissance Faire. Also known as 'the only time you can dress up in a costume (unless it's Halloween) walk around drinking and have everyone think it's completely normal.' This year I decided there would be no wheelchair nonsense. I refused to take one and ruin the mood. After all, it was Pirate's weekend and it would be hard to plunder asunder in a wheelchair. 

Restricted to a wheelchair after keeling 

over in 2012

So I planned everything out to make conquering the day a realistic event. Keeping my long long hair from stifling me, keeping up the fluid drinking aka lots of honey mead & water, getting in those necessary breaks, and refusing to let my body get the best of me. This is me on the right in my pirate costume provided by my friend, posing on my right, celebrating year four at the Renaissance Fair. She insisted on doing the Jack Sparrow 'the Pearl' hand movement in front of The Black Pearl shop. I gave it my best with my trusty cane in one hand and a glass of Honey Mead in the other.

My friend gets a 'muddy' kiss at the Mud Show

My friend and her boyfriend had to muddle through last year's paramedic medical crisis of mine at the Renaissance Fair and started getting nervous. No one wanted to see me keel over and have the medics-in-a-golf-cart whisk me off to the medical building to drown me in gatorade and smother my body in cold towels. Unfortunately the winding down of the day meant my body started to do the same. By the time we stopped to enjoy The Mud Show my body was starting to get 'the signs.' "I need to sit in the shade" was my beginning comment to the something bad is going to happen montage. To bad the closest benches to the shade were still mostly in the sun. I could feel the heat starting to fill me. My heart was going bam-bam-bam-bam faster and faster. My friend had just survived a 'mud show' kiss and was still trying to get the gritty taste from her mouth when she took an alarming look at me. She was on her way to get water before I could get a 'I really really need some water because it's ridiculously hot in this body!!!' So she left her seat and a few moments later I could feel the signs. Her boyfriend, who I have now known for years, moved into the seat next to me. The time was perfect as I caught a glimpse of the ground. 'Please don't let anybody notice!' was my thought before things went dark. 

We ended Pirate's day on a happy note with a big smile!

I came to laying in a lap with my friend forcing an ice cold open bottle of water in my hands. The Mud Show comedians had distracted the audience with such humor no one had noticed the catastrophe unfolding. Thirty seconds of chugging down ice-cold water and a cool feeling flooded my senses. The water did what my body could not do by itself and cooled me down like a normal person's sweat would. I must admit I am proud of my body and myself. True, I could not go at the pace I did before becoming ill but I'm not sad about it. I was able to gauge what my body needed and modify my routine to it. Instead of fighting against the urge to ignore my body's warning signs, I listened and took life at my own pace. Thanks to that I could spend the day with a cane and not restricted to my wheelchair.


Before you start celebrating with me I have to be 100% honest. I got back and felt absolutely dreadful to the point of barely being able to drag myself into a bed. Within moments I was asleep and spent the next day exhausted, in pure misery from my body's complaints, and laying more dead than alive on my bed. I don't regret a moment of the day but I do wish somehow I could have avoided the day after results. 


Enjoyed hearing about Pirate's Day at the Renaissance Fair? Experience my three years of adventure (this was number four) via my squidoo on it: http://arts-humanities.squidoo.com/a-three-adventure-through-the-renaissance-faire

Today's Heart Ain't Feeling So Happy

My heart has decided to do it's own 'thing' today. Before I suddenly crashed into the chronically ill life I now live I never gave heart health a real thought.The most exciting time I bothered to think about it was when creating a transgenic fish expressing the TBX20 gene and even then it was all about the zebrafish's heart and not my own. Yet today I have woken up remembering just how wonderful it was to never ever have given a second thought to the workings of my heart.

Even as I type this I am feeling the constant reminder within my chest. Back in the day my resting heart rate ran in the mid 60s to low 70s. I never once questioned it until the day everything went to health hell. One of the strangest changes was my heart rate. Just resting it has become normal to run in the high 80s to mid-90s. When I have to go in to an unfamiliar doctor they will sometimes comment on it being 'a bit high.' I just say, 'actually, my heart's feeling pretty great today!' I've gotten so used to it, my body sees laying in bed doing nothing, with a heart rate of 94, as feeling a-okay. 

Then I get hit with days like today. I woke up with my heart beating fast. Throughout the day it started beating faster and faster and at the moment is stuck on a speed worthy of feeling like it wants to sprint free from my chest and go bouncing around on its own.  Meaning just getting out of bed and accomplishing a shower (which I did quite successfully) is like you running a marathon. I literally need to rest simply from getting up and doing what I used to take for granted. On days where my heart rate is outrageously high I have to use my walker just to be safe inside my own home. 

The reason I am not 'safe' is because my blood pressure has it's own ideas of what should be happening with me. Back in the day I believed a high heart rate went with high blood pressure. Looking it at it logically: if the heart is beating hard then the pressure in the blood's arteries should be high. Well, logic no longer applies to me. My heart is going super fast but my blood pressure remains low. Sometimes the heart rate gets far to high to fast and the blood pressure gets low or lower and then it becomes to much. I have a bit of a 'not again!' before the heart rate drops suddenly and I keel over. So using a walker means less work on me and keeps my heart rate from going to high to fast. Not exactly my choice but I could not leave the hospital without them getting me one and the cardiologist was all for it. So being myself I found the amusement and checked out the walker I would truly love. If you would like to know you can uncover the right walker for you here: http://www.squidoo.com/choosing-the-perfect-walker.

For many people out there today might seem like a total failure. I, however, am proud of my accomplishments. With a heart going marathon speed I have taken a shower, eaten two meals, crawled up the stairs, and written a blog post. Plus I have high hopes for a slower heart tomorrow and a happy holiday celebration.

Fyi. If you would like to know more about my happy and not so happy heart then please read my work on living with a heart murmur. Again, you will have to visit via the squidoo link here: http://www.squidoo.com/a-personal-guide-to-living-with-a-heart-murmur


Heart Health Made Easy! How to Lower Blood Pressure & Cholesterol 

I Travel Looking Wheelchair Fabulous and So Can You!

Here I am at the pyramids in my wheelchair!

If you are horrified at the idea of having to travel with a wheelchair, believe you cannot travel in a wheelchair, or just curious then listen up. You can travel in a wheelchair while still having an amazing time. I know because I have done it and so can you.

So where did I go?

Before getting sick I made plans to travel to Egypt and Israel. I honestly believed, since it was still a year away I would be magically healthy by then. When our tour time drew close each of my parents offered to stay at home with me but I insisted: I'm going on this tour. I paid. We can take my wheelchair. Everyone was nervous about the idea but I refused to give up the trip I had wanted to take for so long. To me it meant letting my health conditions once again letting my health issues 'win.' I had already had to give up my job, my plans for the future, and my independence. I would NOT let this dream fall away as well.

So how did I travel wheelchair fabulous? Well, I wanted to share it for the people I knew so I wrote down my way in this lens squidoo.com: how-i-travel-looking-wheelchair-fabulous. I want to share with you the ways I found to make it fabulous so you can too. Being in a wheelchair does not mean life is over for you. On the contrary, I have found more ways to be creative in a wheelchair then simply walking on my own two feet. 


Note: If you are upset the story is not just here it is because my work on Squidoo is not allowed to be reproduced completely (even by me) in other places. So you will have to visit there and find out how it works for yourself.

Stop thinking about traveling and start planning your trip today

Proudly Making it Through the Grocery Store. A Chronically ill Victory.

Yesterday I proudly made it to not one but to two grocery stores. People may say, 'so what? I go to the grocery store all the time.' For me, it's not quite the same. My chronic illness means I am not allowed to drive. The last time I drove was because a friend of mine did not realize there really is a very big reason why I am not allowed to drive. After one hour behind the wheel she told me 'that was the scariest hour of my life!' Needless to say my pleas for getting behind the wheel remain unanswered. So when I want to go anywhere I need someone to drive me. This means I also do not have much say which really sucks because you end up going wherever the person wants to go. Thankfully my brother is not into sneaking other errands into the one he wants to go on. He is like me, get in, get out, go home and return to life.

So what is a trip to the grocery store for a chronically ill gal like me? Well a key part happens to be the cane. After about ten minutes I had to give up the cane and commandeer the shopping cart. Then I look like I am trying to weld myself to the cart's handles. I usually end up hanging half over the top of the cart and letting my legs do the work. Then comes the 'o crap I really want to get that' tricky part of the shopping. I hate asking for help so I hold on to my cart for dear life and reach out with one hand in the hope of grabbing the right thing. For the most part it works or someone stares long enough to take pity and hand me what I want. 

My manly man brother carrying me into an Egyptian pyramid.

Now I do like to look at the prices which works just fine in your regular old grocery store but when it comes to ALDI, it all goes out the window. Spending a lot of time in Germany means I have a healthy respect for ALDI but being chronically ill means the respect ends up going a little into the realm of frustration. Have you ever tried to look at prices way up high without letting the blood fall completely to your feet and keeling over? That is where my brother comes in. The man is ridiculously tall compared to my petite frame. When it comes to looking and pulling off shelves he is amazing and when it comes to deciding what to buy, I am amazing. He looks. I grab and keep rolling right along. Old ladies move aside because I am on fire! Alright not literally but once I get going I cannot stop. Stopping increases the likelihood of fainting exponentially so I let him do the produce scrutiny and I pass by things. Then return to what I like. Grab it (sort of) and keep going. I like to think I am perfecting this skill. If there were a chronically ill shopping Olympics then I am working my way towards gold medals with every trip.

So there I was speeding, for me, down the aisles when I came to a realization.....there were a LOT of people in line. You can't speed through the ALDI line. It just will not happen. So I went back and forth with half of me now leaning over into the cart and the other half still moving. My brother stopped by to ask what I still needed, 'meat balls.' I'm not a big meat eater but those Fit & Active meatballs are gluten-free and damn tasty! So he went left and I spotted a line opening. I had a window of opportunity and by ALDI I was going to use it! To the stares of the people around me I reached into the cart for one item at a time. I was the hated crazy store slow person who holds up the line and what was worse, I did not have the funds on me. The cash register guy was staring at me, 'um...I have a lot of health problems (obvious) and I go kin d of slow but the guy with the funds is coming. Really! He is on his way.' He looked doubtful, I felt doubtful, where the hell was my brother? 

Meanwhile my brother was worriedly looking around for his chronically ill sister. No one had started screaming to call 911 so he knew I must still be in one piece. The both of us were panicking and the lady behind me asked if she should just wait a while. Now I was really holding up the line and only half of my cart was on the conveyor belt. All the standing was starting the heart rate going, the blood was dropping.....'I turn around and you're in line?!' He was there in an instant. 'I need to sit down!' I had doubts about sitting on the ALDI floor, it looked clean but I would most likely get squished by an old lady on her own speedy grocery store trip. 'Please do not break.' I whispered to the counter. My cane and I struggled onto the counter to the smile of the old woman next to me. 'I...really needed to sit down.' Why I was explaining this to a lady I had never met went beyond me.

'You don't have any boxes?' Anyone who goes to ALDI knows if you forget your reusable, ultra-green shopping baskets then you better start hunting down the boxes. You have to put your food in something or you are going to be making a lot of trips from the car into the house and back. 'Nope. Just one.' My brother is a manly man. He was fine with one box and fifty trips from the car and back. I shrugged and pushed off the counter before snagging some trail mix, my reward for not keeling over during this grocery trip.

Help Me Hope Jewelry is born from a breakdown, Mcdonald's binge, and lots of much-needed hope

A few days ago I had one of those thank-goodness-this-rarely-happens-breakdowns. I decided I was going to stop all my pill regimes and seemingly pointless treatments. This would be the end. I would just go to back to where I was: wheelchair bound, completely reliant for everyone for everything, and just hope for the best. Luckily I have wonderful people in my life, a fabulous boyfriend, and McDonald's is like my mental high-sodium cure. Get some fries, cheeseburger without a bun, and a McFlurry in me and I am ready to keep on fighting! 

'HelpMeHope' Dysautonomia Awareness Charm Bracelet

After all the tears and all the food I realized I had been on the verge of this happening for a long time. The reason? I had started to lose hope because everyone else around me seems to have lost hope. No one ever said, 'I still have hope! Don't give up hope yet!' It's hard to be the only one hoping day after day. Falling apart made me realize I need other people's help to keep up the hope battle. Trying to do all this hoping day after day without others' help is just about impossible.

So Help Me Hope was born. Help Me Hope jewelry literally helps me keep on hoping. Every piece of jewelry has awareness colors for a certain condition I struggle with on a daily basis. This way people can help others hope by showing their awareness for conditions often overlooked like dysautonomia. 

On my squidoo, I have a lens (aka article) written which explains more about Help Me Hope jewelry. I'm going to attempt to attach the link here http://www.squidoo.com/help-me-hope-awareness-bracelets.

The collection is available on etsy.com at http://www.etsy.com/shop/HelpMeHope.

I must admit my favorite of all the pieces up so far, there are more to come, is the dysautonomia awareness bracelet. I like the simple chain look and the silver wire wrapping around the deep deep blue shade.  

Kuruma desu ka? Confused? I would be too

         
       Sometimes I think I may be more than a little insane as I sit here listening to Japanese phrases. I am not allowed to drive around here so it's highly unlikely I will be needing to ask questions like the one above. By the way, it happens to mean....Is that a car? I can also ask you if you have seen a small truck or a large one. Those are the phrases evidently on the ipod learning agenda.

To hot for pics. Sry. This one from a few wks ago will have to do!

 Still it beats being outside in this blasted heat. I used to think the heat was wonderful, could not get enough of it. Now it gets a little to hot and I keel over. Like last week when I was so highly impressed by the antique teapots I ignored how hot the tiny shop was getting. Next thing I knew Tommy was shaking me while dragging me halfway out the door and apologizing to the shop people who thought I was obviously on the verge of death. The man has amazing multi-tasking skills. How he manages to convince people not to call 911, shake me out of being passed out, not freak out, and still walk at the same time is beyond me.

Although the man has had over two years of dealing with one chronically ill girlfriend who has taken him from icy cold ERs to yellowish ICUs and just about every where in-between. And yes, I am that one and only girlfriend who became chronically ill at 24. Sometimes we joke about all his 'other' girlfriends but I am pretty positive it is just me.

So for the moment this is me. Dressed in a sun dress to beat the miserable heat, improving my pronunciation of Japanese random phrases, and sipping a cool glass of Strawberry blush wine. I feel not-as-bad-still-bad today and my one foot has disappeared again. It's there but the sensation is rather doing it's own nerve thing. But I really cannot complain as I have not fainted today, I finished a painting, and my brother is taking me food shopping tomorrow. When you cannot leave the house alone, struggle with the stairs, and have a lot of health problems, the grocery store gets to be a pretty exciting endeavor. One I really really hope to be well enough to do because I could go for some gluten-free mac n cheese (Amy's brand not Glutino) right now. So will I make it there tomorrow? Positive thinking says 'hell yes' Reality says 'it's 50/50' and I say 'Jake can carry me up the stairs and put me in one of those grocery store motor scooters'