Saturday, February 16, 2013

What the Heat

It's a beautiful day in Southern California. The skies are deep blue with those glorious wispy clouds stretched across the sky. You can see the mountains as if they're just a short walk away and not 50 miles. The sun is shining and there's a gentle breeze. It's a perfect day to go to the garden center and pick out herbs, fruits and veggies for my garden. My shopping cart is full of carefully chosen plants and some soil. All I need is a pink grapefruit tree to complete my shopping trip. All of a sudden the heat is overwhelming. If I don't do something quickly I'm going to be on the floor in the garden center unable to explain what I need. My body goes immediately into fright and flight mode. I abandon my cart and head for my car. Turn on the air conditioning and wait until it's safe to drive home.

How could I forget I'm heat intolerant? Every year I go through the same surprised reaction to my first trip out on a hot day. For some reason it seems to always be connected with my first trip to the garden center every year. Maybe I'm hoping that I have just imagined the severity of my reaction to heat. Maybe I'm thinking I've gotten better. Or maybe I'm still in some sort of denial. What ever the reason I'm still heat intolerant!

I do think it may have something to do with the fact that I've learned to manage my daily symptoms of dysautonomia. My meds are working. I've learned to tolerate the side effects of those meds. I sit, stand or walk when I need to. Avoid hot showers. Eat small meals. I avoid activities that set my body off. I've hit a point where my dysautonomia feels normal. Weather isn't consistent, it is always changing. In California 1/3 of the year is comfortable. For four straight months I can go outside without the worries of how the heat is going to affect me. I forget to check the weather. I forget to have a safety plan (ice vest, friends to help, early morning trips). Well my body has given notice. Hot weather is a possibility this time of year. Be prepared and don't forget how luck I am to be able to go to the garden center in the first place!


P.S. I haven't written in a while because I've always written about the new experiences I have with POTS. Dysautonomia has become my normal, so it isn't that often that it gives me a surprise.

Psalm 121:5-8
The Lord is your keeper;
The Lord is your shade of your right hand.
The sun will not smite you by day, nor the moon by night.
The Lord will protect you from all evil;
He will keep your soul.
The Lord will guard your going out and your coming in, from this time forth and forever.

Sunday, September 2, 2012

Heat and meetings and perfume, oh my!

This year my POTS symptoms have been manageable. Until this week I almost thought I might be getting better, but what I discovered was that I have become very good at taking care of this POTSy body God has given me. This week I have had 4 mini crashes. A mini crash in my terms is experiencing a severe POTS symptom without going to the emergency room and the mini crash usually only takes a few hours to go away.

My first crash involved the heat. It was in the 90's on Wednesday and I needed some supplies at the other end of the school. On my way back through the heat my body went through it's typical pollyjuice/blood boiling body transformation. Then my heart rate went through the roof and my blood pressure dropped. I knew I had to sit down, but unfortunately I was still outside. As I'm sitting there my symptoms are getting allot worse and I don't think I'll be able to walk anywhere without passing out. For some reason the hallways at school were empty, I might as well have been on a deserted island in the middle of nowhere. I needed help and I knew that if I stayed there I was going to pass out.  I would need to get up and walk to the closest room and hope that there would be a person who could help me in that room.  I had to make a decision which isn't easy when you're experiencing brain fog.I choose the classroom closest to me with a teacher who knows what I will need to stabilize. Good decision, I make it to the classroom and the teacher is there. She brings me my ice vest and offers me some water and luckily in a short time I'm feeling much better.

The second crash involves sitting all day for a workshop. I'm lucky if I can sit for 25 minutes and the thought of sitting all day sends shivers up my spine. The first thing I notice is that I will be sitting in a folding chair all day, oh boy! Within the first 25 minutes of the workshop my feet ache from my blood pooling down to my feet and I can feel my heart rate is starting to drop. So I bring my feet  to the edges of my chair.  I'm secretly thankful for my slender body and flexibility. It doesn't take my body long to find this position uncomfortable and I can't seem to find a position that makes my body happy. Being in a room full of teachers I'm very aware that I must look like one of "those" students who can't sit still for a minute. I decide a walk about the room might be helpful but I become distracted by the colorful posters on the wall and I decide I might be better off if I find a corner to stand and listen to the speaker. Pooling begins again and I go back to my seat where I begin fidgeting in my seat to try to find a comfortable position again. I even try hanging my feet over the back of the chair, which only gives me a few minutes of relief and I can feel my heart rate dropping quickly. I know at this point I need to lay down and I head for the nurses office. I'm asked by several people if I'm OK, but at this point I can barely speak and if I could my brain couldn't form a coherent sentence. As I'm laying there I"m able to take my pulse and my heart rate is sitting at 32, not so good. I am blessed with very caring friends and after a few minutes of waiting for my return they take off in search of me. It's very nice to know that I have friends who are looking out for me. By the end of the workshop my brain is the consistency of milk soaked bread and one of the speakers decides to call on me for an answer. I don't hear the question because I'm easily distracted by the 50 other conversations around my table, and when she repeats it I'm not sure what the answer is, I try to reason out an answer from my soggy brain and my friends are whispering the answer to me (this is so much like what happens in school) and I give some off the wall answer, which is wrong.  I don't think the workshop leader knows what to do with a wrong answer in room full of teachers who should all know the answer. The day is over and I now feel like I'm a pinata at the end of a party (shredded and beaten).

My third crash happens while waiting in line at a store. After standing for 15 minutes,  I'm finally helped and my heart rate is so bad I'm not thinking straight and I don't know what I have been waiting for. I feel so sick that I can't figure out how to use the ATM to pay for my things. The cashier figures out there's something wrong and asks if I need some help and I tell her I think I might faint and she leads me quickly to a chair. After sitting for a while I begin to feel better and head for home.

My last crash happens today at church. I'm already feeling pretty bad from the past couple days but I decide to push through it. The singing is tough but I enjoy the songs and feeling a bit out of breath. All of a sudden someone who must have worked in a perfume factory and fallen into the perfume vat comes in and sits right behind me. My lungs begin to close up, my head hurts, and I'm ready to hurl chunks which would probably even out the smell factor in church. I try to give myself a chance to feel better by sitting in the back room of the church, but the hurl factor just won't let up and I dash for the nearest exit.

Like I said, I thought I was getting better but I have just figured out how to keep myself from crashing. I normally never go out in the heat for any reason, but last week I needed supplies and that outweighed my health needs at the time. I usually avoid sitting for long periods, but I was required for my job to attend this meeting hence another mini crash. I never go to stores on the weekends or busy times, but I had been working all week and couldn't buy the gift until the weekend. I will be getting a gift card the next time. And finally if I'm not feeling well enough to go to church, stay home and worship there, God will understand.


Proverbs 17:22 A joyful heart is good medicine, but a broken spirit dries up the bones.

Monday, July 9, 2012

Stairway to Heaven

Last week I went on a mini vacation up the coast to Cambria. Cambria is a quaint little seaside town with little artsy shops, bakeries and small mom and pop restaurants. The beach is nestled with pine trees on one side and vineyards on the other. A perfect retreat for this California POTSy.

Just a few mile North of Cambria is Hearst Castle. A tour of this hilltop mansion is always a must see for me whenever I'm in the area. The last time I took the tour was 27 years ago, way before my POTSy days. All I remember of my last visit was the amazing art, antique furniture and unbelievable architectural details. For this visit I booked a main tour of the castle and a tour of the upstairs bathroom (upstairs, I know, what was I thinking!).

I was so excited to share the Hearst Castle experience with my daughter Megan. We begin the tour and the first thing I see is a huge staircase leading to the pool and main entrance. I'm thinking to myself "were these stairs always here, I don't remember a single stair". As I'm standing on the bottom of the never ending stairway to begin my trek I begin humming the Pink Floyd song "Stairway to Heaven". Because surely I'm going to die before I make it to the top! I stop at about the 10th step to catch my breath and I'm joined by a few elderly comrades. By the 20th step I'm out of breath and have to sit down, my elderly comrades have just passed me up and I begin to giggle as they pass me up. By the 40th or so step, I'm ready to curl up on my step and take a dirt nap. I finally make it to the top and as I'm climbing I pray for a fainting couch to collapse on when I get to the top. To my surprise, at the top of the stairs there are a few rattan loungers completely empty that I'm sure God has placed there in answer to my prayer. As I lay there catching my breath I catch the gloating stair of one of my elderly comrades, I'm glad I made someone happy that day. Lucky for me the tour guide is rambling about the details of the construction of the castle, which gives me just enough time to catch my breath and hopefully rejoin the tour. I'm happy to see my beautiful daughter flitting around taking pictures and I'm grateful she is use to my POTSy self and can enjoy the tour. The rest of the tour continues into the house and about 50 of us are herded like cattle from one room to another.  I'm pleased to find chairs throughout the tour for those who can't stand in one place for long and I'm able to enjoy the tour. The tour ends and we have a 30 minute break before the next tour. I plop down on the rattan lounge chair and my daughter takes off for more picture opportunities  (she's quite talented in taking her own picture at key poolside spots).

The next tour begins for the upstairs bedroom and I'm thinking "what was I thinking when I booked a tour that had the word upstairs in it?" I go to the end of the tour group, which has only about 10 people in it, trying not to hold anyone up as I slowly head up the circular staircase. I reach the top of the stairs and I'm exhausted. I'm tempted to plop myself on one of the beds in the room I'm viewing and I remember that I'll set off a million alarms if I step off the designated indoor outdoor strip of carpet we are required to stay on throughout the tour. Since I cannot lay on the bed my eyes begin to search for a chair, and I sadly realize they don't have chairs on this part of the tour. I slowly trudge through the rest of the tour with occasional evil stares from the tour guide who can't begin his spiel until everyone is together in the room with him. When the tour is complete I head for my favorite rattan lounge chair and take a long rest, thankfully the garden area is beautiful and Megan enthusiastically takes more breathtaking pictures. After a well earned rest we catch a tour bus back to the bottom of the hill and enjoy a delicious lunch made with happy cows from the ranch owned by the Hearst family and head back to Cambria.

Sometimes I forget I have POTS, which can be a good thing. When I forget I often do things I wouldn't normally do out of fear of having a POTS episode. The tour was difficult, but it was worth the difficulty seeing my daughters eyes light up in every room we entered.


Psalm 111:4
He has made His wonders to be remembered; The Lord is gracious and compassionate.


Thursday, April 12, 2012

Keeping up with Rover

I needed to make a trip to my local home improvement store today. My bathtub drain is running slow and I think a drain snake will do the trick. I always get a bit excited when I'm faced with purchasing a tool that proves that I can tackle a home repair on my own. Unfortunately I can't help but dread these trips because the store is the size of a football field and always leaves me pooped out. This store has so many items it could take a day just trying to find one. Since I'm on Easter break and only need two items I thought I would designate a day to tackle the task. If this trip does cause a POTSy crash at least I'll have several days to recover.

I head into the home improvement store and I'm greeted by two peppy store clerks who offer to assist me in finding my items! Wow, I've hit the home improvement store jackpot! The lady assisting me is in no hurry to get me to the item I'm looking for, so we casually walk through the store at my snail paced speed. We find the aisle and she points out the shelf I need and she leaves me to make my choice. I pick out something within my budget and realize I also need a tub screen to stop the drain issue from happening again. I roam around the store lost as usual. Luckily another store clerk offers assistance and we're off again. This time my clerk takes off at the speed and agility of a Labrador retriever! I'm practically running to keep up with him. I almost lose him twice as he dashes between customers, carts and forklifts to get to his destination. When I finally catch up I'm out of breath, leaning against a rack, bent over trying not to pass out. He looks at me and smiles and says "you don't work out much do you?" I giggle and when I catch my breath we begin to discuss my tub issues. He decides that I have the wrong tool and he offers to show me something much better that costs less. With a big smile the man (I call him Rover) takes off at full speed to the other end of the store. Again Rover's darting around all objects in his way and I'm beginning to giggle again thinking this may be an interesting challenge. I'm also wishing I chose to take the electric shopping cart. Oh the fun of darting down aisles at full speed with the excuse that I was trying to keep up with Rover the store clerk if I knock something over. As I take off through the store I end up losing my pal Rover, but I remember he had told me what I needed was on aisle 31. I head in that direction and find him waiting enthusiastically with several items in his hand to show me. By this time I'm really dizzy but on the good side I now see two Rovers! I close my eyes for several seconds and when I feel my heart rate has slowed down I open my eyes to see one Rover staring at me with a look of concern on his face. "Are you okay mam?" he asks. I'm still too out of breath to answer so I put up one finger in hopes that he'll give me a second. I finally am able to speak and explain that I have a medical condition that makes it hard for me to keep up with him. He apologizes for moving so quickly and begins to show me the products. After I replace the over priced item with the new cheaper item, he suggests I need a high powered chemical to help dissolve the clog. So we're off to another part of the store and I realize he's forgotten about my medical condition because he's taken off at full speed! No longer up for the challenge I try to follow Rover at my own pace and fortunately he is heading back to me with a bottle of drain clog chemicals and a pair of safety goggles! He excitedly explains that the chemicals like to spit and can be very dangerous! Hmmmm..... just what I need, spitting dangerous chemicals! Rover has no more suggestions for me and he takes off enthusiastically for another customer. As I head for the cashier, I'm thinking I no longer need an electric cart but a roll away bed. Luckily there is no line at the check out counter and I head to my car.

After a long rest I tried out my new gadget. I'm happy to say it works better than I expected and now believe every home should have one! In case you're wondering the gadget is called "Zip it", it's long, thin, barbed plastic about the length of your arm. It's quick, easy and it's very cheap.

Your inspired POTSy plumber,

Hebrews 12:1
Therefore, since we have so great a cloud of witnesses surrounding us, let us also lay aside every encumbrance, and the sin which so easily entangled us, and let us run with endurance the race that is set before us.

Monday, April 9, 2012

In Search for Mr. Clean

To clean or not to clean? That is a question I ask myself every time I pull out the cleaning products in hopes of putting some sort of dent in a house that appears to be over-run by dust bunnies, shower grunge and the science experiment in the toilet. I'm not a lazy person and I really don't mind house keeping chores, but my evil POTS nemesis doesn't seem to want to take on house keeping chores. My lungs seem to close up and the rest of my body becomes useless. It often takes a full day to make up for 30 minutes of cleaning the shower. Now many of you may be thinking maybe POTS has its advantages. Giving up house keeping doesn't sound like such a bad thing. But living in a dirty house is just gross! Who wants to bathe in shower grunge, collect dust bunnies on the bottom of your socks or barf in the science experiment growing in the toilet(ew!).

So yesterday as I was laying in bed surrounded by pillows, trying to recover from the POTS revolt over cleaning the grunge covered shower. I began trying to solve the cleaning issue. I visualize the cleaning products that have triggered all the problems and then I see the solution is simple, and has been staring at me from the bottle of my floor cleaner for years, "Mr. Clean"! I need to find me a real life "Mr. Clean"! So now the problem is finding "Mr. Clean". I guess the first place to look is on one of those dating sites with catchy names like (fake name). I can just see the post "Looking for a man to clean the grunge in my shower, the science experiment growing in my toilet, loves to eradicate dust bunnies, is attracted to pasty white skin, purple feet, doctors visits, likes ER's, enjoys laying around watching TV and has a sense of humor! I can see the lines forming as I write.

Hmmmm.... maybe I need to come up with a second option. I could ask my adult children living at home. I just dislike asking them to become my own personal slaves, they do so much already. I could also start trying new cleaning products, hopefully something earth friendly.

I have to say part of the fun of writing my blog is finding pictures to go with my post. This week was truly entertaining. There were Mr. Clean imitations, altered Mr. Clean men, and even a few almost nude men with cleaning products strategically placed. There were a few pictures of gentlemen who looked like they would be a nice addition to my humble abode.

Inspired to giggle,

Since I'm in a cleaning mood;
Psalm 51:10
Create in me a clean heart, O God,
And renew a steadfast spirit within me.

Saturday, March 24, 2012

In a funk

Been in a funk for the last two days and couldn't figure out what's causing it. I finally put my finger on the cause and realised that my funk is caused by the loss of a fellow POTSy friend. The reason I had such a hard time figuring it out was that we were not super close. We made occasional comments on each others facebook status's, we're both believers and both of us had many things in common. She was very close to many others in the POTSy community who had every right to mourn the loss of a very close friend, I have no right to share their deep loss. But still why the sadness, why the funk?

Then it hit me.... we shared a battle with POTS with a similar battle plan.
She was someone who tried to put a positive spin on POTS. She found humor in the struggles of having POTS when it shouldn't be funny at all. She always had something positive to say if someone was down. She found beauty when others couldn't. This amazing woman was sharing a part of herself on facebook one day and was gone the next. Her battle with POTS is over. The reality of how POTS can take someone so quickly was a shock to me. The grim reality that if this could happen to her then it could happen to me.

I know that I could die in a car crash tomorrow and worrying about my future with POTS is futile, but I need to remember that things happen in my life are there to mold me into the person I need to become. It's a reminder that life can be short and each minute is meant to be a gift not to be taken for granted. There will always be a special place in my heart for Kathleen, she's a shining light of the woman I'm inspired to become.


Matthew 6:25-34
25 For this reason I say to you, do not be anxious for your life, as to what you shall eat, or what you shall drink; nor for your body, as to what you shall put on. Is not life more than food, and the body than clothing?
26 Look at the birds of the air, that they do not sow, neither do they reap, nor gather into barns and yet your heavenly Father feeds them. Are you not worth much more than they?
27 And which of you by being anxious can add a single cubit to his life's span?
28 And why are you anxious about clothing? Observe how the lillies of the field grow; they do not toil nor do they spin.
29 Yet I say to you that even Solomon in all his glory did not clothe himself like one of these.
30 But if God so arrays the grass of the field, which is alive today and tomorrow is thrown into the furnace, will He not much more do so for you, O men of little faith?
31 Do not be anxious then, saying, 'What shall we eat?' or 'What shall we drink?' or 'With what shall we clothe ourselves?'
32 For all these things the Gentiles eagerly seek: for your heavenly Father knows that you need all these things.
33 But seek ye first His kingdom and His righteousness; and all these things shall be added to you.
34 Therefore do not be anxious for tomorrow; for tomorrow will care for itself. Each day has enough trouble.

Saturday, November 5, 2011


I'm so Dizzy, my head is spinning
Like a whirlpool, it never ends
And it's you POTS, making it spin
you're making me dizzy

These are lyrics to one of my favorite oldies that seems to be the theme song for my daily life with POTS. I'm dizzy all day long. Every time I change positions my world appears to sway like I'm on a ship on rough seas. Those who are "normal" have no idea how often they change positions in a day. They just walk through life with no idea that their body is doing it's job of regulating their body to do such simple tasks. It's not just sitting down, standing up or laying down. It's leaning over a student, tying a shoe, tilting my head to put a knife away, putting a pot or pan away or getting a roll of toilet paper from the cupboard. Just normal stuff that most people never think about. Because this has become my "normal", I tend to ignore the swaying ship feeling and keep on going. Most people would sit down and wait until the swaying stopped. Ignoring the swaying ship feeling can be a bad thing, today while putting a knife away my world began to sway and I missed the drawer and the knife came tumbling down on my foot "ouch". Luckily I only ended up with a small cut. Usually the swaying stops within a few seconds and I can continue on with what I'm doing. Sometimes the swaying ship takes a mini vacation in my head and doesn't go away, then I know I can't ignore it any longer and I have to accept defeat for the day.

When I was first diagnosed with POTS the swaying ship took its toll with sea sickness all day, every day. I battled with nausea for about two years before my body finally became use to being on a ship on rough seas. While I'm on the subject of ships, my family wants to go on an Alaskan cruise! Hmmm, not sure how my body is going to like that one, and I'm not sure if I even want to spend a large sum of money to become intimate with a strange toilet off the shores of Alaska. I'll have to pray about that one.

Welcome to the SS Michele, be prepared for a goofy ride and occasional rough seas ahead.


Psalms 107 23-32
23 Those who go down to the sea in ships, who do business on great waters;
24 They have seen the works of the Lord, and his wonders in the deep.
25 For He spoke and raised up a stormy wind, which lifted up the waves of the sea.
26 They rose up to the heavens, they went down to the depths; Their soul melted away in their misery.
27 They reeled and staggered like a drunken man, and were at their wits' end.
28 Then they cried to the Lord in their trouble, and He brought them out of their distresses.
29 He caused the storm to be still, so that the waves of the sea were hushed.
30 Then they were glad because they were quiet; So He guided them to their desired haven.
31 Let them give thanks to the Lord for His loving kindness, and for His wonders to the sons of men! Let them extol Him also in the congregation of the people, and praise Him at the seat of the elders