Monday, June 21, 2010

If You Give a Mouse a Cookie/ If You Give Michele a Disease

One of my favorite books to read to my kindergartners is If You Give a Mouse a Cookie by Laura Numeroff. The book starts with a picture of an adorable mouse holding a chocolate chip cookie, with the words;"If you give a mouse a cookie, he will ask for some milk to go with it." In the story the child keeps giving the mouse what he asks for, only to be asked for something else. It's a very sweet story, and in the past I've always used this to describe the typical direction home renovation projects usually go. If you replace the bathtub, you'll want new fixtures to go with it, until in the end you have remodeled your entire bathroom.

Well it seems like my villain disease dysautonomia falls into the same category. If you give Michele dysautonomia she'll get EDS ( Ehlers Danlos Syndrom) to go along with it. Or how about one of the dozens of other syndromes that seem to like to tag along. Several months ago there was a posting on one of my favorite fb sites (Dysautonomia Awareness), "What else do you have?". The commonalities in diseases from a staggering number of those who shared were mind boggling! Here's a list of the ones that came up most often.

POTS-Postural Orthostatic Syndrome

NCS-Neurocardiogenic Syncope

EDS- Ehlers Danlos Syndrome

IBS-Irritable Bowel Syndrome

CFS-Chronic Fatigue Syndrome







Heart disease



And a large number of digestive disorders.

I could easily place half of these on my list, though I have not been diagnosed with them. Why no diagnosis? I don't want to take anything else, I'm so super sensitive to medications, one more might throw me overboard. So I push through the popping hyper extended joints, stretchy skin, migraines, princess and the pea syndrome, arthritis pain, purple hands and toes just so I don't have to take one more pill.

Well my big fat foot brought me back to my doctors office. I lived with one swollen foot for three weeks, and wearing ugly shoes during those weeks was the last straw! I want my pretty shoes, I want my pretty shoes (as I lay on the floor kicking and screaming)! So I drag myself to the doctors office, and I'm sitting on the examination table. The head doctor comes in and takes one look at my foot and informs me that my foot is indeed swollen (wow, she's good). She asks about recent injuries, which I answer "none". Does it hurt, "sometimes". Length of time swollen, "three weeks then, now it's been five". She asks about medications, and I give her the list. She looks back at my feet which are now a lovely shade of purplish/black, she raises her eyebrows, and asks if this is normal? I smile and respond "yes". She looks through my lab results from my recent hospital visit and asks me what the hospital did for my low platelet count? My answer, "What low platelet count?". My doctor responds with, "they didn't do anything about this platelet count? Hmph!". She spends several minutes rechecking my chart, and starts running down a list of thing to watch for. As she goes down the list; head aches, dizziness, swelling, discoloration, shortness of breath and irregular heartbeat. I remind her that those are all symptoms I experience on a daily basis. She "hmph's" again, and says nothing for a few minutes, then says that if I feel worse than normal to call her immediately. Now in my head I'm thinking, how do I distinguish worse than normal. These things happen in at various degrees daily. She sends me to the lab, where they take 10 blood samples and after bandaging me up the nurse declares "oh... I forgot one, sorry." Grrr.... don't you just love those phlebotomists! After being stabbed by a needle for the second time, I schedule my next appointment for the following week as directed by my doctor, and head out the door. I then realize I have no idea what having a low platelet count means!

Now being curious and feeling the need to be informed, I head for home (with a side trip for some yummy Chinese food), to find out what having a low platelet count means. I get on my well used computer and head for Web MD. Before dysautonomia I had never heard of this sight before, but with all the disease tag-alongs from dysautonomia I go there to keep myself informed about drug side effects and my current medical issues. Now, this site isn't for the faint at heart! There should be a warning on this site in big RED letters, If you haven't been given a specific diagnosis stop here! They give you every medical possibility on your inquiry. The list for low platelet count included Lupus and Leukemia, AHHHHH! Calm down Michele, no one mentioned Leukemia on the list, get a grip!

So I went back to the doctors today. My platelet count is still dropping, she still doesn't know why, and she wants to run more bloodwork. And to top it off, she has no idea why my foot is swollen! I WANT TO WEAR PRETTY SHOES!!! Can't she just stick a pin in it and pop it, that should bring the swelling right down!

I'm much more at ease with it at this point, I know my autonomic system seems to continue to fail me in one way or another. I'm pretty sure dysautonomia is the culprit, and in the mean time, I'll just stay away from sharp objects for a while! If this turns out to be some new disease, I want to name it. I was thinking of something along the line of BFF syndrome (Big Fat Foot Syndrome), and who doesn't need a bff, that's what I'd like to know!

Still inspired,

Saturday, June 12, 2010

Electric Cart/Bumper Car

It's Saterday, and better yet, shopping day! I woke up this morning having a worse than normal POTSy morning. Being typical Michele, I decided to push through it (see previous blog), and take off for the market. As I get out of my car I'm feeling shaky, dizzy and tired. Now this should have been my cue to turn around and head for home and my very comfortable bed. But no....., being my typical stubborn self I decided to push through it. Though I'm not so stubborn that I didn't see the writing on the wall, and I did make what I believe to be a smart decision, and use the electric shopping cart in the store.

I picked the one closest to the door, got settled in and pushed forward. It won't go! There is no manual, I guess most people are brilliant enough to figure it out. After several minutes, and several tries, I get my cart to go. Immediately I felt I had made a mistake, I felt like I was moving in slow motion, this shopping cart was sooooooo slow! It was like energizer bunny meets Tommy turtle. In my head I'm screaming "I NEED SPEED!" When I'm in my car I like to drive fast, driving isn't a means to get from place to place, it's a race to see how fast I can get there. You've seen the likes of me before, I'm the one passing you on the road only to be stopped at the next stop light, but at least I got there first! So I'm lumbering down the first isle, and have to get up to reach the soda on the top shelf, and I'm thinking, "I hope all my items aren't on the top shelf, or I'm doomed!". The store I'm shopping at is going through a remodel, and they have decided to move everything around, the gingerale is no longer in the soda isle, and I'm screaming again, "who in corperate America decided to put gingerale in the nut isle?" Oh I know, only a nut would come up with that (sorry just venting). I get my gingerale, and head around the corner. I ended up going down an isle that I didn't need to go down, and my shopping cart dies! I look around, and see a young woman working at the end of the isle, and I call out to her, she doesn't respond, I think she's ignoring me, so I try again, this time I get her attention. I ask her if she can call someone to bring me a new cart, and she disappears. As I'm sitting there, I decide to try my cart again, and Bingo, the cart begins to move, again at a snails pace. I decide to drive myself to another cart to save the store workers the trouble. I pass by management, and explain what I'm attempting to do, and they send someone with me to help me switch carts.

Carts are switched and I'm on my way! This cart is way faster than the last one, woohoo the race is back on, until I crashed into the corner of a graham cracker display and knock over a half dozen boxes of crackers. And I'm thinking to myself, "well what do you expect, they're in my way, what else was I going to do, slow down and go around them?" I head for the place I left off, and find that two out of every three items are on a shelf that I can't reach grrr! I turn the corner and the bread isle is cluttered with bread racks that workers are unloading, and my speedy cart won't fit. I'm thinking again, " hmmmm, my cart would make a pretty decent bumper car, and I'm sure I could push those bread racks right out of my way!" But reality sets in, and I don't want to be banned from the store, so I stop my cart, get out, and walk down the isle and get the bread items I need, then head back to my cart. I'm out of breath, and could really use a couch at this moment, but I push forward. I need bananas, and try to get as close as possible. I stop in front of a dried fruit display and reach for the bananas, but the cart decides it really liked crashing into the graham cracker display and creeps forward and knocks over the dried fruit display, oh no! Now, the veggie guy and I are on pretty good terms, and when he heard his display tumble over he turns around to give the person who destroyed his display the evil eye! After he realizes it's me, he gives me the one eyebrow raised look, and heads in my direction. At this point I'm out of my cart trying to make things right for my favorite veggie guy! He asks "what's up?" and I explain about my rough morning and the need for the cart. He tells me he's surprised by my story, but he explains that the store usually doesn't allow demolition drivers to drive their electric shopping carts. I chuckle and apologize, and after all is picked up I head very carefully to finish my shopping. Because the store is not in it's usual order, I've forgotten a few things and head back to look for the items missing. My cart is overflowing, these carts are not meant for those with families. As I head around the corner, the eggs slip off the top of the cart, along with my bananas! I hang my head down with shame, and look for someone from the store to clean the mess I've just created. The young woman who went for help when I needed a new cart gives me a look and heads for the phone, next thing I hear is "clean up on isle 12". I get the items I've missed, including the eggs, and rest them on my lap, and head to the check out isle.

The store is really busy, so I unload the cart myself. By the time I'm done, I'm so dizzy, I can't see straight. I sit back in my cart a bit dazed, the cashier asks for my store club card, and I give her a blank stare. She asks again, and very shakily I hand her my card. I can only imagine what she must be thinking about me (intoxicated comes to mind). She completes the sale, hands me my receipt, and wishes me a good day. The bag boy asks if I need help out, and I tell him "no thank you", I believe I've caused enough trouble and head out the door.

I'm sure after I left the store management found a video clip of me and made a sign for the employees warning them not to allow me to use the electric cart again. It probably says something like "Warning this woman is dangerous and will destroy store property! Do not allow her to use an electric cart!"

Honestly I won't do that again, I'm more tired from that trip than the trips when I push my own cart. Needless to say, the next time I will know better than to go shopping without enough spoons to push my own cart.

Still inspired,

Wednesday, June 9, 2010

The Push!

The push, not to be confused with La Push (the native American village in which a very gorgeous Jacob resides)! Anyone with a chronic disorder knows what "the push" is, it's pushing your body to it's very limits, sometimes just to do a simple task. We all do it, and many of us pay for it later. To not do the task would be giving up or giving in. It would be the same as a prize fighter quiting a fight before he even started just because he might lose! For me, doing the task is part of living, to give up is to stop living.

I recently had a crash (severe symptomatic episode) at church. I knew I wouldn't be able to make it up the stairs to help lead a small group, so I had asked a friend to let the other leader know I wouldn't be able to make it. Well this lead to a well meaning friend taking over some basic decisions for me. I knew I needed to go home and rest, but next thing I know I'm being told I should use my wheelchair. Now I'm more than willing to use my chair if the episode is really bad, but that day I just couldn't make it up stairs. I knew that I could make it back to my car, but most likely at a very slow pace. I was told that not using my chair was an issue of pride, and that I should get over my pride issue and use the chair. Again, I know my friends intentions were only to look out for my best interest, but guilt and shame only made me feel worse. Next I'm being told that someone would be driving me home, now I'm on the fence on that one. At the time I felt up to driving, but if I had walked to my car maybe I would have needed a ride home. But the options were taken from me. Coming from a family with a handicapped family member, I learned very early that you don't just help the handicapped, you give them the option, for example; asking"can I open the door for you?", instead of just opening the door. I just want my options. Now if I'm not responding coherently to your questions, please make the decisions for me, in fact you might want to call 911.

Well, this well meaning friend brought me home. Next thing I know we're discussing my work options! I had shared that work leaves me exhausted in the evenings and weekends, but the joy of teaching is so worth it! I shared that if I had to quit it would be like a death sentence to me. Being isolated in the evenings and on the weekends if tough enough, I can't imagine living like that 24/7. I know many of you are living this reality, and I know many of you are doing some amazing things with the time you're given, I'm just not ready for that yet! I was told that that may be where my life is heading and that I should face that reality. I FACE THAT REALITY EVERY DAY! I know it's a possibility, but as long as I can work, I will work and pay the price for it, it's worth it! When I'm at work I feel so much better than when I'm at home, I think I'm getting spoons from my students, and that's how I'm surviving.

I guess the purpose of this blog is to let those who have people with chronic illness in their lives, to be sensitive to their wants and needs, and to ask them if they need help. And if you are suffering from a chronic illness, don't be afraid to ask for what you need, and to be OK to decline if you don't need the help. I believe that letting others make decisions for you gives them free reign to always make decisions for you. Positive boundaries are a good thing, it gives me some sense of control in my life, even though I suffer with a disease that leaves me feeling like I have very little control.

I hope you understand that I do feel very fortunate to have so many amazing people who care about me and want what's best for me in my life. I know these friends only have the best of intentions, but sometimes we're the only ones who know what we truly need. For many of us "the push" is worth it.

Always inspired,