Friday, December 31, 2010

Happy New Year

As I reflect on 2011 I realize it's been a year of acceptance and appreciation for what I have. I have learned how to live with this new normal and view this new often purple, light headed, fatigued, tired and unfamiliar body with humor and patience. I'm settling into this new life style that is so foreign to my nature. I've learned to appreciate what I can do, because there are so many out there who have it so much worse. I've learned to educate myself on my illness and not be afraid to question my doctors. I've made so many new friends because of POTS that I would have never met. The support and sharing through the many POTS groups has given me the constant reminder that I'm not alone in this. POTS has changed who I am. My body may be physically worse off than the year before. But the person I'm becoming is definitely richer and better than the person I was before I got sick.

My hopes for next year are:
*A cure for POTS.
*A closer bond with friends and family.
*The willingness to trust God with the direction He chooses to make in my life.
*A miracle of healing would be nice.

Wishing all of you the best new year ever.


Romans 8:18
For I consider the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us.

Monday, December 27, 2010

Pajama Day

I promised myself that this winter break I would keep my social calender empty with a few minor exceptions of family events on the holidays. My two weeks would include pajama days filled with rest and relaxation.

I started things off with a day spent in my favorite blue snowflake thermal pajamas with a book I haven't read yet from my e-reader. I could feel the fatigue melting off my exhausted body with every page I turned (or clicked). A pajama day to be proud of.

On my second pajama day only my most comfy red flannels and softy snowman socks (try saying that 3 times in a row) would do! I decided I would treat myself to a marathon of The Nutcracker. The artistic direction most of these ballet's took inspired me to do a great deal of shouting at the TV like an angry football fan. I mean, who in their right mind would switch the sugar plum fairy solo with a duet with a sheep? There comes a point where artistic expression crosses over into rubbish! It was somewhere during the party scene that I began finding the commercials more entertaining than the ballet!

These commercials made my top 10 most memorable.

1. What is cable television without a Snuggies commercial. Gee, it comes in every shade of the rainbow, including animal print, camo (in case you need to hide from your loved ones) and Spongebob Square pants for the kids. Who doesn't need a poly-me-ester oversize blanket with sleeves. In my book, if it doesn't fit, don't wear it! I guess I can cross that one of my impulsive buyers shopping list!

2. RLS (Restless Leg Syndrome) medication, within 20 seconds of listening to this commercial 90% of it's viewers have diagnosed themselves with this condition and are running to their phones to call the 800 number to get their free drug sample. Unfortunately while they're out of the room dialing, the announcer has spent 2 minutes on the long list of side effects this drug may cause.

3. Acutane lawsuit commercial. If you or a loved one has taken Acutane and has suffered one of the following conditions please call ****** law firm now at the 800 number below. Obviously this commercial came on quite a bit, and if my teaching job disappears I may consider doing commercials. I wouldn't be too surprised if the same law firm isn't representing patients who ended up taking the above RLS drug in a few years.

4. The upside down hanging tomato plant. Really? What's wrong with using a nice pot and growing tomatoes in the traditional way?

5.The 16 individual brownie pan. A definite impulsive shoppers must have, because it would look lovely collecting dust next to the Foreman Grill, Juicer and The Chopper!

6. The Cami Secret, just clip this onto your bra straps and instant cami! Woohoo, so how hard is it to actually wear a camisole? This so reminds me of the dickeys of the 70's, but at least the dickey replaced a long sleeve shirt, and the dickey didn't last very long so I'm sure Cami Secret isn't too far behind it.

7. Fat melting pills, just take the pill twice a day, and watch the fat melt off your body. I'm sure this commercial is popular with those who don't want to work a little for their weight loss!

8. Stretch mark removal cream, which follows the fat melting pill commercial. You will need this product after all the fat melts away and leaves your body with rubbery stretch marks. But you need to hurry for this one, the first 2 callers receive a free .25 sample, but don't fret the next 1 million callers who purchase our product will get one free! But wait, if you call within the next 5 minutes you'll also receive this travelers size bottle, just pay separate shipping and handling.

9. The shake weight, this commercial had me blushing within the first two seconds. The Shake weight is designed to tone woman's arms, but I'm sorry to me it looks like something hmmm... how to word this, I can't so you'll have to check out this commercial yourself, just check their web site @

10. So far my all time favorite commercial is the Schick Quatro Woman's bikini trimmer. This is a "they didn't" commercial. It starts off with three woman in short skirts and heels pushing pink lawn mowers singing about trimming below the belt. They pass different shaped shrubs singing the praises of the many shape options you have (oval, circle triangle and narrow rectangle). I kept telling myself they surely can't be showing this on TV, yet I couldn't stop watching giggling hysterically.
If you haven't seen it it's definitely a must see, it can be seen on u-tube titled "mow the lawn".

So unfortunately that's how I've been spending my first week of winter break, hopefully the second is much more exciting.

Inspired to spend my days more wisely,

Proverbs 13:4 The soul of the sluggard craves and gets nothing, but the soul of the diligent is made fat.

Thursday, December 23, 2010

Merry Christmas

I wanted to wish my loyal and precious friends a very merry Christmas.
May you enjoy the precious moments given to you.
May your day be symptom free.
May you bless those who need you.
May you remember the reason for the season.
May God bless each of you and keep you in His arms of protection.


Luke 2:10-11
And the angel said to them, "do not be afraid; for behold, I bring you good news of great joy which shall be for all people; for today in the city of David there has been born for you a Savior, who is Christ the Lord.

Saturday, December 18, 2010

My BFF has a New Friend

My BFF (Big Fat Foot in case you've missed a blog or two.) has a new friend. Which would be my BFB, Big Fat Belly! I would prefer not to have Big Fat anything, but POTS seems to be a magnet for everything undesirable!

One of my POTS symptoms is constant nausea. It feels like morning sickness all day long without the the sweet prize after nine months. At first I responded as most do, and didn't eat much. The decrease in eating seemed to make my POTS symptoms even worse, and the nausea only increased. It took over a year to discover that eating small meals all day helped my nausea and gave me little boosts of energy as well. Eating has become a triggered response to nausea. I feel a little nauseous I eat.

It doesn't help that the foods my body likes most are a bit high in the fat category! I crave nuts, dairy, breads and pasta. Fruits and veggies sit at the bottom of my stomach like a giant boulder with time a of digestion equalling that of a piece of chewing gum (which is several years according to gum legend).

All this eating has its consequences. Two years ago I was a size 0, two years of my new eating regimen and I'm an overflowing muffin top size 4. Dieting in any way shape or form is out of the question. I struggle with an eating disorder, and trying to diet would only put me on a path of insanity! I was a walking, talking calorie calculator. I couldn't put a single thing in my mouth without doing a mental calorie count. It took me a while to accept eating as a good thing, food has always been like poison to me, what's a girl to do? Exercise is a problem as well. Anything that makes my heart rate go up triggers my POTS symptoms. Yoga positions make me dizzy. I'm not sure what the answer to this problem is, but to be honest my fear of becoming as big as a house are beginning to look like a possibility. The serenity prayer seems to be the one thing I can cling to. God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. This is a small hurdle compared to others I've faced. I'm lucky I can eat, many people with this condition often have serious digestion issues. Maybe that's the answer, eat while I'm still fortunate to be able to do so. There may come time when I won't be able to eat the way I can now, and the extra spare tire around my middle may come in handy.

Inspired Michele muffin

Philippians 4:13
I can do all things through Him who strengthens me.

Saturday, December 4, 2010

Christmas Spirit

This week I didn't need to have a visit from the ghost of Christmas past to realize that the spirit of Ebenezer Scrooge had taken up residence in my body. Or maybe the Grinch, but snippy, grouchy Michele had definitely entered the room when it came time to decorate my home.

Every year I look forward to the first signs of Christmas. The wanna be home decorator begins dreaming of new ways I can transform my home into a Christmas wonderland. I almost cheer when the stores begin playing Christmas music right after Halloween!

This year was no different. I usually begin decorating on Thanksgiving weekend. Since our Christmas decorations are up in the attic I have to wait for my He-man son Sean to get them down. Unfortunately for me, Sean doesn't quite have the same enthusiasm for decorating the house as my daughter and I have. It took a week of hounding before he finally got them down for me.

It's Wednesday night, right in the middle of my work week. I'm tired and fatigued but excited to finally be able to get the decorations up. My daughter and I have always decorated the house together and we both were like two kids in a candy shop. Traditionally we have always played Christmas music, but this year my daughter asked to sway a bit from tradition and play some of her favorite music instead. Wanting to be the hip, cool mom I agreed to her request with a little inner disappointment. After five minutes the music began to grate on me and I regretted not sticking with tradition. I believe that's when the Grinch began to seep into my oxygen deprived brain.

Everything began going down hill from that point on. First, the lights in the tree wouldn't light in two rows of the tree (we have a fake tree because of allergies, yuck). Just trying to hold my arms up to check each individual light and afterward spreading the branches so they look somewhat natural was exhausting. It was at this point that "Ms. snippy" took over my body. Then the light for the manger of the nativity scene wouldn't work so "Ms. Whinny" joined "Ms. Snippy". I'm sure at this point my daughter was thinking it's time to put me in my room for a "time out". Thankfully she was still in her "happy place" joyfully humming away to her music. We finally get the lights to work on the Christmas tree and it's time to wrap the tree with ribbon. I begin to help, but my arms are no longer of any use to either of us, so my daughter points to the couch and tells me to sit. My daughter busily finishes the ribbon and asks for my opinion (what she really wanted was praise for a job well done). "Ms Perfectionist" and "Ms. Impatient" joined the party of attitude crashers, and I begin "fixing" the ribbon, only to have to start over. My joyful assistant Megan leaves the room with a few attitude crashers that I created "Ms. Not Good Enough" and "Ms. Angry". I get the ribbon in place and the pain and fatigue have taken over and I give up on the long anticipated Christmas decorating and head for a bath.

As I'm soaking in my "extreme" bubble bath with the jacuzzi jets on full blast, my conscience begins to take over. I begin to mull over what was the real culprit of the evening. I realize I'm not upset with the lights, nativity scene or the ribbon placement. I'm really angry at my POTS for stealing one more good thing from me. Can't I do anything normal without the reminder that I have POTS! Many questions begin to surface. Did I have this much trouble decorating last year? No. Does this mean I'm getting worse? Maybe. What will things be like in a year from now. Stop, stop, stop! I need to stop worrying about tomorrow and deal with today. I just crushed my precious daughter's spirit, and I need to take responsibility for my actions. It's time to kick out the attitude crashers and eat some humble pie.

I did what I needed to do, apologize to my daughter, praise her for a job well done, and thank her for the amazing help she is to me. Then I fell into bed knowing that I'm blessed to have an amazing, helpful and forgiving daughter.

When I woke up the following morning the house was completely decorated by my awesome daughter. I might have POTS, but I also have two amazing children, a wonderful home that can be decorated, food on my table, friends and family to share the good times and the bad. Just another reminder to remember the good always outweighs the bad.


Luke 12:28
"But if God so arrays the grass in the field, which is alive today and tomorrow is thrown into the furnace, how much more will He clothe you, O men of little faith!"

Monday, November 22, 2010

Computer Overload.

I'm one of those people who truly enjoys everything about Facebook. I love responding to my friends posts. I have had days when I've spent hours praying over some of my fb friends who are struggling (most of those fellow POTSies). I get a kick out of U-tube posts, checking out new pics and the funny status reports. I treasure the comments others post on my status reports, and enjoy letting others know they're heard. I'm amused at the Frontierville's often controversial posts. I love to play FV even if I feel like a lab rat running through a maze for an insignificant prize at the end. Some of my favorite bazaar prizes was a monolith sized sun dial, a stars and stripes barrel and my all time favorite.....a Trojan rabbit. What would the 18th century frontier be without a trojan rabbit?

Last week I had a computer overload. Work was exhausting, my students were more challenging than usual. Though "under the table boy" only had three difficult days out of five. I believe his mother should be considered for saint status. She is one of the most amazing woman I've come across. Last week I needed to work on report cards. I had planned on working on six or seven a day so that I wouldn't be overwhelmed. I started on Monday and when I returned on Tuesday my report cards were cyber breeding and had doubled. The computer tech guy had already left for the day, so Tuesday was a wash. The tech guy was able to fix my problem quickly on Wednesday and I was able to complete a dozen report cards that afternoon. Now to top things off, some suit at the district office decided this week would be a perfect week to do benchmark testing! I know you'll be shocked to hear that kindergartners are not able to bubble in scan tron sheets, so guess who gets to manually put in 32 benchmark test sheets into the system? That would be me! They were due on Thursday, so I needed to get them in on Wednesday afternoon. To start things off, I couldn't get into the system, thank God the tech guy was still in and walking down the hall when I needed him! He gets me me into the system, thanks Colin! I begin entering my student's scores. I push the tab butten too many times on the tenth students score sheet, so I backspace and lose all scores I've input so far. My body begins to feel the fatigue and my hands and feet are in pain from the pooling of blood in my extremities. I decide to put my feet on the computer desk with both feet on the outside edges of the keyboard. It sounds uncomfortable, but I'm very flexible. I start over, and lose the scores a second time half way through the process. Now some of you might be thinking, "Why don't you save the scores you input every so often?". The answer is, the computers are very slow and it takes forever to save the scores, it's almost faster to lose the scores and start over. I kept thinking I wouldn't make the same mistake, but my fingers are so use to responding to things a certain way that the habit was hard to break. Well, the custodian (who happened to be a sub) walked in my room to do his job, he gave me a quizzical look. I'm sure my position looked a bit odd to him. He begins vacuuming, and I continued to enter my students scores for the third time. I lost the scores again! I begin screaming "NO,NO, NOT AGAIN!" over and over. The custodian stopped vacuuming and gave me a "Are you insane?" look. He shook his head, I apologized and he quickly finished cleaning my room and left. I'm surprised the men in the white coats didn't make a visit to my room. I finally smartened up and entered all the correct scores globally (enter the first student's score, push a global button, and all the students have the same score), then I saved those scores and had a salty snack, came back with a little more sanity, and finally changed the students scores that were wrong, and I was done!

When I got home that night, I had no desire to touch my computer. My friend Lisa who works on a computer all day has told me she has no desire to get on the computer once she gets home from work. I never understood her reasoning until this week. I was surprised that I didn't want to check on my friends, I didn't want to watch funny u-tube videos and I didn't want to complete missions on Frontierville. I just wanted to veg out. Finally on Saturday I started playing Frontierville, but I still avoided social contacts and had no desire to even write my blog (which I usually find fun and stimulating). Thank goodness I feel more like my old self today. I'm looking forward to checking out my friends statuses, praying, laughing, watching u-tube videos and playing Frontierville.

I have a week off from teaching, and time to enjoy Thanksgiving. POTS has given me a reason to be thankful daily for the things I can do, and the blessings God has given me. Having an attitude of gratitude does change your perspective. Wishing all of you a joyful time of family, friends and health.


Saturday, November 13, 2010


This seems to be the week of MORE! MORE concerns that my POTS is getting worse. MORE stress from work with report cards and benchmarks due. MORE fear as I face a new diagnosis and a doctor who appears afraid to treat me. MORE darkness as the increase in meds makes me feel like I'm in a valley I desperately don't want to be in. MORE losses of things I love because of POTS. MORE chemical sensitivities, no more stepping out my door during cold weather to smell one of my favorite smells, burning fireplaces! MORE fatigue, MORE nausea and MORE sleep deprivation!

I want MORE of a social life. I want MORE energy to do the stuff I have to ask help for. I want MORE of my old self back. I want MORE time without the constant reminder that I have POTS.

I'll be so thankful when my body has adjusted to the med increase and I'm less whinny and MORE like my old more cheerful self!

Need to be MORE inspiring,

Psalm 40:2
He brought me out of the pit of destruction, out of the miry clay; And He set my feet upon a rock making my footsteps firm.

Thursday, November 11, 2010

Fire Walker?

My sense of humor seems to take a front seat whenever I get news that tries to take me to my "unhappy" place. As I lie in bed contemplating my visit with my new neurologist and his diagnosis of peripheral neuropathy my humorous part of my brain decided to come up with what I could do with my new symptom or talent (to be on the positive side). Visions of fire walkers began dancing in my head! Hey, I could totally do that and look and appear to master the whole "mind over matter" thing! The funny thing about my imagination is it's pretty detailed. I can hear Brick House by the Commodores playing in the background as I strut across the burning rocks in a spandex jumpsuit that only members of a Jane Fonda '80's workout video could pull off. The people around me are clapping and bouncing to the music clad in shorts and t-shirts of the tropical Paradise they're surrounded by. As specific realities of my POTS symptoms set in so do the details of the scene in my head. Being temperature sensitive the scene changes from a tropical paradise to the frozen arctic. The spandex jumpsuit is replaced by a fur lined parka and the people are no longer swaying to the music in shorts and t-shirts, but huge coats and lined snow pants. There's no music playing, only the chattering of teeth by the crowd. As quickly as the scene changed from tropical paradise to arctic freeze, so did the humor change to hard truth. This new diagnosis isn't really funny.

As the doctor was moving a metal rod from my toes and up my leg, the reality that I couldn't feel the rod below my shin left me puzzled. The same thing was done with my fingertips up my arm, at first I was relieved that I could feel the rod on my fingertips, but then I was shocked to realize the rod was freezing cold at the fold of my elbow, and I didn't know it was cold until then. Peripheral neuropathy the doctor notes and on to other test and a discussion on treating my recently increased POTS symptoms. The discussion on neuropathy would have to wait as I educated the doctor on how I was treated in the past and a bit of hand holding (my holding his hand) as I encouraged him in proceeding with my typical regimen to combat my symptoms. I left the office with a lab slip for blood work and new questions to my already long list of unknowns with this disease.

This new diagnosis wasn't a total surprise, I had suspected it for almost a year now. Many of my POTSy friends have shared their experiences with neuropathy, and my symptoms seemed to echo theirs. But I've always felt that until I had a diagnosis, I would keep on my rose colored glasses and pretend my symptoms were just something else! I never seemed to ask the question about neuropathy in the past, because it always seems like we're dealing with some other more life threatening symptom of this disease, or major hurdles such as wheel chairs and handicapped parking.

I've noticed that I've been given the truth of this disease in small bite size chunks. Heart rate and dizziness chunk, nausea and fatigue chunk, wheel chair and handicapped parking chunk, migraines and supplements chunk, and now new doctor, health plan and neuropathy chunk. Never more than I can chew, never more than I can handle. God knows me too well and because of that I'll trust that this too is as manageable as all the other chunks.

Still inspired, Michele

Proverbs 15:15
All the days of the afflicted are bad, but a cheerful heart has a continual feast.

Neuropathy may be associated with varying combinations of weakness, autonomic changes, and sensory changes. Loss of muscle bulk or fasciculations, a particular fine twitching of muscle, may be seen. Sensory symptoms encompass loss of sensation and "positive" phenomena including pain. Symptoms depend on the type of nerves affected (motor, sensory, or autonomic) and where the nerves are located in the body. One or more types of nerves may be affected. Common symptoms associated with damage to the motor nerve are muscle weakness, cramps, and spasms. Loss of balance and coordination may also occur. Damage to the sensory nerve can produce tingling, numbness, and pain. Pain associated with this nerve is described in various ways such as the following: sensation of wearing an invisible "glove" or "sock", burning, freezing, or electric-like, extreme sensitivity to touch. The autonomic nerve damage causes problems with involuntary functions leading to symptoms such as abnormal blood pressure and heart rate, reduced ability to perspire, constipation, bladder dysfunction (e.g., incontinence), and sexual dysfunction.

Saturday, November 6, 2010

Hard Choices

In the U.S.A. we have 4 choices in health care:
1.Medicare for the poor, disabled and retired.
2.HMO's the least expensive private insurance. Clients must use doctors within their network, a long and difficult referral process for specialists and many prescriptions are not covered.
3.PPO's the most expensive private insurance. Clients choose their doctors and most prescriptions are covered.
4.Pay for your own medical services out of pocket.

As a child my father taught me that the most important thing when providing for your family was to make sure you had insurance. Life insurance, car insurance and health insurance were all a must. Having a sister with Cerebral Palsy made the importance of having insurance a reality.

As a young mom I was faced with a difficult choice of staying home with my children or working to provide health insurance for my family (my former husbands employer didn't provide health insurance). I chose to work even though childcare took 75% of my salary, I was pretty much working for the insurance benefits!

I have been very fortunate over the past 20 years that my employer has provided me with a PPO with very minimum out of pocket expenses and great service. Last Spring I was faced with a very difficult decision. My PPO would now cost me $360 dollars a month to keep. Now add the fact that I was just informed that I would be taking a 20%pay cut (roughly $1,600 a month) and the decision was made for me. Unfortunately for me my budget is a bit tight because of my recent divorce and purchasing my home from my former husband at the top of the market. I couldn't sell my home if I wanted to because my home took a 33% drop in value because of the recession. Don't get me wrong, my former husband deserved every penny, just bum luck on the timing of the recession.

So here I am with an HMO and a bit concerned over the care I might receive. I tried very hard to be proactive. I chose a group that refers patients to my neurologist,as most POTSy's know a good neuro is the key to getting better. I also made my general practitioners appointment the first week that my new insurance was activated (which was a real hassel in itself). I had my prescriptions changed over, and one denied the first day grrrr.....! I requested the referral to my neuro and was told that this group doesn't refer to my neuro! I was told that they would attempt the referral process and that was the last I had heard about it.

I have been very blessed to have been in great health (for a POTSy)this past month, so I had not given the referral process another thought. Which was a huge mistake on my part. With teaching 32 students and a few "special" students I've been a bit preoccupied. I still have to laugh (rather than cry) at the irony, I have 12 more students and get paid 20% less. Now some would say you're working less hours, NOT. Prepping for 32 is much more time consuming, and hence I'm putting in more hours!

Well, all that stress and longer hours is finally catching up with my POTSy body. All week I've been watching the warning signs that my body was on the down swing, shortness of breath, very purple hands and feet and extreme fatigue, but I'm a push through it type, so I kept working. On Thursday my body said "that's enough, you need to rest!" So I requested a half day sub and went home and took a much needed nap. When I woke up I decided to call my new doctor and check on my referral. I was told it was denied. Being too sick to deal with the stress of making numerous phone calls I called it a night.

On Friday during my lunch I called the patient advocate with my HMO to find out the process of fighting my denial. My advocate was actually very nice after I explained the reason for choosing her group. She told me she would do a little investigating and get back to me. A few hours later she told me that my neuro was never on the referral list and gave me the group he was connected with. She told me it would be a long process to switch and that she would recommend seeing their neuro and hopefully get the ball rolling on the referral process.

I call the neuro that I have been approved for and attempt to make an appointment. I'm put on hold and then told my appointment date would be December 2nd. I tell them I'll take the next available appointment, and I'm told that December 2nd is the next available! My voice goes up an octive and I explain that I have a rare disease and I can feel my body getting ready to shut down, can they please fit me in somewhere? I'm told "So sorry, this is the best I can do". I become panicky, because I know I'm on the road for a trip to the ER and an unwanted vacation in a hospital room without a view! In a shaky voice I ask the poor man on the other end of the line "So if I end up in the hospital who do I tell them my neuro is?", he responds, "You don't have a neuro, I'm sure they have someone in the hospital there who can help you." I start laughing hysterically (I'm sure at this point the man must have though I needed a psychologist and not a neuro). He confirmed my appointment time for December 2nd, and quickly got off the phone with me.

So here I sit, without a neuro, feeling very POTSyish and abandoned by my insurance company. What's this POTSy girl to do? Those of you who have shared the past four years with me know that God has carried me through a difficult divorce miraculously. He's helped me recover from an eating disorder that consummed every thought. He has comforted me through the death of my father and He gave me a quick POTS diagnosis and an amazing neuro. He will carry me through this bump in the road as well. I will give this to God and use the wisdom and resources He has provided me to get through this. This is nothing compared to losing the love of my life through a painful divorce.

Still inspired,

What would difficulties be without my favorite verse.
Jeremiah 29:11
I know the plans I have for you, declares the Lord, plans for welfare and not for calamity to give you a future and a hope.

Sunday, October 24, 2010

POTS: Tornado warning!

My life with POTS has left me feeling like I'm living the movie "The Wizard of Oz". One day I'm struggling with POTS symptoms, that resembles the bleak black and white world of Kansas. The next day I'm almost symptom free and living in the joyful, colorful world of Oz. After two years of having POTS, I'm still surprised by the fickleness of my symptoms. It often reminds me of a tornado destroying one house and the house next door is still completely in tact. The randomness of the destruction is a mystery.

The POTS tornado seems to skip over me at work! I've often shared how blessed and fortunate I am to be able to teach. I'm awed and amazed that I'm able to walk to my car at the end of each day. Teaching kindergarten is no easy task, most of my students have been the center of their families universe all their lives (as they should be). Now place those precious five year olds in a classroom with 31 other five year olds and only one teacher to meet all their needs and it's quite a shock to their little systems. Now add the hundred or so standards that the state of California requires me to teach them, the shoe tying, the emotional meltdowns, the glitches in the schedule and the daunting task of preparing them to be the best students they can possibly be is overwhelming at times. Being able to complete my day is nothing short of a miracle, so I celebrate this accomplishment daily, knowing God must have a purpose for me in this place.

The POTS tornado seems to touch down for odd reasons as well. Like grocery shopping (which I love), I'm always completely wiped out, exhausted and very symptomatic after every trip. POTS seems to strike during worship time also, singing leaves me out of breath and dizzy. The loudness of the worship band does odd things to my heart rate and adrenaline, I've learned to sit at the back of the church which has helped quite a bit. It can be so frustrating, today I went to the front of the church to pray with a friend (my heart wanted to be there so badly), the band music was roaring and so were my POTS symptoms. It was so distracting that I started to become angry, I was able to remind myself as to why I was there, and put my mind back on track and finish what I was called to do in the first place.

I often wonder at the randomness of the symptoms. Why can I do such a strenuous job such as teaching and yet shopping, singing and worship music sends me crashing. I'm learning to be thankful for what I can do, and ask God for answers as to what I can't do. If I listen hard enough I'm sure He'll answer!

Inspired and learning,

Saturday, October 16, 2010

Living the Moment

Before my POTS diagnosis I woke up in the morning, got ready for work, worked hard, looked forward to the end of my day, and counted the days or hours for the weekend to hit. I loved my career and enjoyed what I did every day, but I looked forward to my time away from work. I often see TGIF as someones status on FB, I've never seen a TGIM. Work is some place to make money to pay the bills and do the things you enjoy outside of work.

Work became something completely different for me after my POTS diagnosis. When I was hosplitalized I could barely walk from my bed to the bathroom without being completely exhausted, dizzy, out of breath and as white as a sheet. I became a "House" episode. My heart,lungs and brain all checked out normal (yes, even my brain). It wasn't until I told the doctors to check my heart rate and blood pressure laying down and standing up did my diagnosis become obvious. I was told my condition is rare, the treatments varied in each patient, and I may or may not recover. I didn't realize at the time how scary those statements should be to me. I was given several meds to try (some worked and some didn't), and a short list of things to avoid. The list made it pretty obvious that mornings were gong to be difficult, and I still chuckle at one of the items : Avoid having a b.m. in the morning. How am I suppose to do that, I've done my big business every morning for as long as I can remember! Most of my education I picked up from other POTSies, I don't know what I'd do without their knowledge and support! When I first returned to work there was a deep appreciation for the fact that I could go to work. Work no longer was I place I had to go to five days a week, but a place I get to go to five days a week. Believe me when I say it isn't easy. Every day I wake up nauseated, dizzy, and exhausted.

During this journey, I became connected with many amazing people who share this wonderful diagnosis. What I discovered was the majority of them have it so much worse than I do. Daily migraines, fainting (I have never fainted, only feel close to fainting), severe digestive issues, severe pain and fatigue, tachycardia and bradycardia, and weak swollen and discolored limbs. My friends can't work, and want to work so badly. They deal with sever chronic illness every minute of their lives, and we complain about a rough day at work.

In the beginning I had a deep appreciation for being able to work, but that has grown into something much more. I'm learning to appreciate every minute. Every word I speak, every communication I acknowledge can leave a life changing experience in someone I touch, no matter how small the event may seem. Even in chaos and exhaustion I have a choice as to how I use it. Sometimes when my classroom is being unruly, I'll close my eyes for a second and appreciate the fact that life is happening around me. The rules in my room are important, but how I enforce those rules is just as important. I'm looking less at the clock as a way to measure the end of my day, and more as a measure of what more I can do in the time I have left.

I've been given twelve more students in my class, and at first my attitude was this is wrong, I can't do it, and I'm not getting paid enough to do this. What I realized is that I get to have twelve more students in my room, they will change who I am and how I teach, and I have the opportunity to change and affect who they are. Is it wrong, YES! Developmentally kindergarten and first grade should only have 20 students. I can't change the state budget, but I can accept what I have and make the most of this opportunity.

I've also seen a change in my attitude about parent-teacher conferences. These conferences add two to three hours to my day. For those of you who are not in education, I get paid for a 6.5 hour day, not for eleven or twelve. I'm not given a stipend or extra pay, it's part of my job description. I've always done this part of my job grudgingly. A week of hard labor, and the hope of getting them complete without any parental conflicts. But this year was so different. I have such a supportive group of parents, and I love my students, so I couldn't wait to spend some one on one time with these amazing parents. This time I enjoyed the insight I received from my parents about my students, and feeling like we had connected as a team to provide success for their students was a joy! Last night I posted "joyfully exhausted" as my status because I knew every moment was well invested and worth the exhaustion I felt at the end of my day.

I guess my target audience would be those who are relatively healthy. Work doesn't have to be a prison sentence, "time served". There are people who are chronically ill who would give their right arm to be in your shoes. Try to think more about the time at work as opportunities to make a difference, and the people around you as precious moments to make a positive difference in someone. Many of my friends are alone and would love to be able to touch someones life (for some talking makes POTSies out of breath and dizzy, including myself).

For my POTSy friends, try not to waste precious time focusing on the can'ts. Dysautonomia is a thief, and has stolen our health and many of the things we enjoy in life. You have family and friends that need your heart, compassion and moral strength. Please don't let this disease steal the joy out of the moments you spend with others, make each moment count, because to be honest there's always someone out there who has it allot worse than you do.

Always inspired,

Psalms 126:5
Those who sow in tears shall reap with joyful shouting.

Saturday, October 9, 2010

I'm a Super Freak, Super Freak, I'm super Freaky!

I'm a super freak! I would have downloaded Rick Jame's Super Freak, but I'm not THAT KIND of super freak. The song is kind of fun and catchy though.

It's Friday, and it has been a busy week. Back to school night, unruly students, PTA meeting, picture day, and alphabet party to end it all. I had plenty of volunteers, and the students had a blast using foamy letters to make A,B,C hats, letter name necklaces, stamping A,B,C's on vests, shaving cream writing and play-dough letters. But managing time, behavior, checking on groups and taking photographs can be very tiring. Thankfully all went well the rest of the day, but I was pooped.

To finish off the day I had a doctors appointment with my new doctor. I had to change insurance plans because of an increase of $350 on my former and much better plan. I was very nervous going from the top of the line insurance to the bottom. It's scary when your healthy, add having a rare chronic disease and it can be a nightmare. The new doctor was very nice. Then I told her I had dysautonomia and she replied "You have what?". I said it a second time, and she made a pretty good guess at what it is by it's name, which is a better response than I'm use to getting. I gave her my symptoms list along with the medications that work. While I was sitting on the examining table my feet turned a hideous shade of purple (my feet have a tendency to show off on the examining table), and her eyes popped out and she said "Is this normal?" I giggled and said yes, and apologized for not including that symptom in the list I just recited. She informed me that I should get some compression stockings, and I giggled again and said "I do wear them, but I'm a bit naked right now." She giggled too, so we're off to a good start. At least she gets my bazaar sense of humor. I requested a referral to my neurologist who specializes in POTS, and she informed me that it's next to impossible to get a referral outside their building. My sole purpose in choosing that medical group was that they were the only one in my plan to refer to my specialist. So I guess I'm on the road for some red tape and hassles. Oh well, what's new.

So I get home and I'm feeling more fatigued than usual. I take off my sweater, and my hands and arms are red, which is a new thing for me (my hands are usually red and purple and that's all). To top it off my arms are blotchy and spotty! I take off my shoes, and notice my feet and lower legs look the same. I decide to take it easy and I stick a frozen dinner inside the microwave. In 5 minutes and no effort dinner is ready. I watch "Say Yes to the Dress" and decide to call it a night. I get ready for my nice cool bath and as I step into the tub I notice my whole body has blotchy red spots "Nice"! As I dry off my swollen purple feet and my blotchy body, I start crying. I'M A FREAK! Then my wonderful sense of humor comes back and Super Freak begins to play in my head, and I feel a bit better. When I put my socks on I notice my feet are so red that they can be seen through my socks. I decide to show my daughter my freakiness, and I tell her that I'M A FREAK! She giggles and tells me "No mom, you're special!". Special is good, and a much more positive way to see things. So "I'm super special, super special, I'm super special now, da-da-da-dum, da-dum, da-dum, da-da-da-dum, da-dum, da-dum".


P.S. It's so funny my week ended this way. On Wednesday I actually thought I might be in remission, I felt almost normal Sunday through Thursday, I hadn't felt that good since before POTS. Funny how quickly things can change, just gotta role with the punches.

Heal the sick, raise the dead, cleanse the lepers, cast out demons, freely you have received, freely give.

Sunday, October 3, 2010

My Favorite Discoveries

I thought I would designate a post to some of the things I've discovered that have helped me cope with having POTS. Some are personal life lessons, and some can be purchased at the store or on line.

My very favorite thing is my Mio heart rate monitor watch. For over a year I didn't quite know what my heart was doing, and unfortunately I confused bradycardia symptoms (low heart rate) with tachycardia symptoms (high heart rate). Knowing what my heart is doing, and how bad it really is has given me peace of mind.

My ice vest is one of the ugliest pieces of clothing I own, but also one of the most important. My body doesn't respond to temperature like the rest of the world. My body temperature rises and falls in extreme weather. I purchased the Artic Heat ice vest because it's light weight and doesn't soak my clothing. It was a bit expensive but definitely worth it.

For a year I carried packets of salt with me everywhere, ewww gross! I discovered from some helpful POTSies that salt tablets are way better. Please check with your doctor about dosage and whether this is a good option for you. And don't forget plenty of water to go with it.

I spent the first year of my POTS diagnosis in a continuous state of nausea. I thought it might be the medications I was on. I discovered by accident that if I ate small meals all day that the nausea only exists in the morning hours.

Finding the right medication combination can be a long and frustrating road. In the beginning of my medication trial it was very frightening. The first medication they tried made my heart raced so high, that after I vomited I was on watch for 24 hours. The medications I'm on now had such bad side effects that I became suicidal. The sad thing was, that the medication worked very well with my POTS symptoms, and they didn't have any alternative medications to give me. I was forced to live through the emotional battle or become bed ridden and an invalid for the rest of my life. It took a little over a year, but I'm now able to take my medications without the scary side effects. What a difficult choice that was! Be patient, and be in constant communication with your doctor.

Living with POTS is like living with the Blob, the symptoms change from day to day, and sometimes it's hard to tell the difference from a "normal" illnesses and POTS symptoms. Being connected with a website support group is very helpful. People who share this unique disease usually can answer questions you have. Often times reading posts from others will shed some light on symptoms that I have that I didn't know were POTS related. People who have lived with POTS often have a wealth of information that our doctors may not have tried. And always seek the advice of your doctor when you hear about something new.

Like I said in the previous paragraph, living with POTS is like living with the Blob. Many of us share similar symptoms but our bodies react to medications differently. Some people with POTS are very symptomatic and are still on the road of finding something that works for them, and others have found treatments that allow them to live close to normal lives. Remember everyone is different.

I often experience survivors guilt, feeling bad for those who have it so much worse than I do. But I have learned to appreciate what I can do, because there are so many who have it worse. Even if I was living with the worse case scenario of POTS, it still would be better than paralysis, being a burn victim or so many other debilitating diseases. POTS has taken so much away, but I do have a choice as to how I deal with that loss. I've learned to focus on what I can do, and not on what I can't.

POTS has friends, don't be surprised if you become scent sensitive or intolerant. I became very dizzy at a bon fire at church one day, who knew? Sound sensitivity was very surprising, my heart rate went through the roof listening to very loud praise music at church. Ehler Danlos Syndrome, Raynauds, Irritable Bowel Syndrome, and Lupus usually go hand in hand with POTS. Just be prepared for anything.

I try to keep my friends and family in the loop of how things are going for me, but I'm also learning that it's a process for them too. They have lost the Michele they knew well, and they have been given a different Michele in it's place. Don't forget to give them some grace, and communicate what you need from them.

I have been a servant most of my life, serving and helping are things I enjoy. POTS has made that difficult. I've learned to accept help and ask for help, neither of these come natural. I've learned to accept that the warm fuzzy feeling I would get from helping others is now happening to those who help and serve me. God is at work in those around me, and I need to sit back and get out of the way.

When writing my blog, I try really hard not to pound people over the head with my faith, I'm more of a love people to Jesus, than a hit people over the head with a bible type. Being a Christian is at the core of who I am, and not sharing how God has made a difference in dealing with POTS would be denying who I am. So hear it goes, I trust that I have POTS for a reason, I believe that God uses my circumstances for His purposes. I have seen God work miracles through my POTS diagnosis, and I've seen God change my heart through the difficult circumstances. I'm not saying this is easy, there are days when I'm frustrated or angry with things that happen to me with POTS, but God gave me feelings for a reason and I'm learning it's OK to ask "Why this God?", and I'm learning to wait patiently for answers. Because He always answers, maybe not in my timing, but in His.

Truly inspired,

Jeremiah 29:11
For I know the plans that I have for you, declares the Lord, plans for welfare and not for calamity to give you a future and a hope.
My life verse.

Monday, September 27, 2010

HOT, Hot, hot!

It was 109 degrees in beautiful Southern California today! I have been dreading this weather all year. I thought maybe the wonderfully cool summer was a prequel to an autumn closer to that of the autumn felt by the North Eastern US. But I was W-R-O-N-G wrong!!! I had already switched my boring summer wardrobe with my delightful winter clothes. Hello soft cashmere, leather boots and turtlenecks, good bye drab cotton t-shirts and leggings. I had my heart set for savory soups and delicious stews and roasts, enough with the fish, chicken and rabbit food!

I knew the heat was coming. One of the symptoms of POTS is temperature intolerance. I've often described the way I feel in the heat, to the scene in Harry Potter Chamber of Secrets, when Harry takes Pollyjuice Potion and his body goes through a very uncomfortable transformation. I feel like my blood is bubbling, a strange fatigue and tingling sensation takes over my limbs, my heart rate rises, I get very dizzy, my temperature rises a couple degrees and I feel very panicky. When I feel that way, I need to find a cool place and cool off immediately. If I don't I end up on the ground and my body shuts down. This is always followed by a trip to the hospital. Oxygen, an IV and a day or two in bed will usually get me back to my old self. But this is obviously something I want to avoid. Nothing like a public display in front of my students, parents and colleagues to make me look incompetent.

I'm very blessed to have an air conditioned classroom. But there are other hurdles to jump outside the classroom, and that was what I dreaded most. Usually I'm a worrier, but I'm finally learning that worrying gets me nowhere, and I need to trust that God has this all under control, even if it ends up being my worse case scenario. I'm also learning to look ahead and plan for the things that might cause me trouble. Finally I'm learning it's OK to ask for help.

One of my concerns was patriotic observance. It's a wonderful time where the whole school assembles together to pledge the flag, sing a patriotic song, make school announcements and say the school pledge. It's a very moving and special time of the school day. It usually lasts ten to fifteen minutes. On a hot day, it's one of my most difficult times. I'm very fortunate to have the support of the first grade team, who have offered to help me out if I ever need it. So I felt confident that this time of the day would be covered, and sure enough my kindergarten team mate took over my class during that time.

I was also concerned about lunch time, picking up my students after lunch means walking in the heat. It doesn't sound so difficult until you consider that walking with five year olds is and adventure in itself! The chances of at least one student falling down is very high, add a pushing or poking student to the mix, along with someone taking cuts, and a simple two minute walk turns into a stressful ten minute escapade! I asked my kindergarten team mate to give me a hand again, and she was kind enough to help. I followed lunch with indoor P.E., and my students were very well behaved!

I finished the day indoors in the wonderfully air conditioned classroom. It's time to go home, nothing dangerous there, WRONG! Walking to my car in 110 degrees can feel like a walk through the Sahara Desert without water. Then try getting into a car that has been sitting in the the hot sun all day, and it's as bad as it can get. I've had to pull over because my symptoms became too dangerous to drive with. I knew my drive was going to be tough, so I was fortunate enough that my daughter agreed to come to my rescue. She gets to my car ten minutes before I leave, and cools off the car before I get there. The only problem I had was that the longer cooler route to my car was hotter than I expected, and my ice vest was completely melted and warm by the time I got to my car.

A little preplanning along with some help from those around me, and living with POTS isn't so bad!


Psalm 139:17-18
How precious also are Your thoughts to me O God! If I should count them, they would outnumber the sand. When I am awake, I am still with You.

Thursday, September 23, 2010

"Normal" sick leads to coughing, barf fest and a side bar of piddle pup!

OK, so I was wrong to be excited about being "normal" sick! How could I have possibly thought that being "normal" sick wouldn't trigger my POTS symptoms. You would have thought that with the experiences of having a type 1 diabetic daughter, that I would have known better. I guess getting caught up in having some degree of a "normal" illness must have caused a short episode of brain fog.

Well the novelty of being "normal" sick wore off within 12 hours. "Normal sick" entails abnormal amounts of bodily fluid excreting from almost every part of the head that has holes, which unfortunately triggered some part of my stomach to rebel without warning the first night. There's nothing like the shock of waking up to a barf fest in the middle of the night. Then the wonderful realization that I can't get out of bed because of the extreme dizziness of POTS. For some reason my sense of humor seems to always kick in at times like these, and I had to giggle at the thought that just 12 hours ago I was actually joyful over having this "normal" illness! My body found it's payback for laughing at something I should have treated with a little more dread and respect! Well the adrenaline rush from being sick and the loss of my sleeping meds makes the evening a wash.

The next day feels like a normal sick day with the added bonus of worsening POTS symptoms from losing my POTS meds the night before. That night I head for bed with hopes and prayers to have a night that doesn't resemble the night before. My prayers are answered LOL, this night is definitely different from the night before. I wake up coughing, the kind of cough that feels like hairy little creatures are running along my air passages. The coughing gets out of control, and next thing I know I'm peeing like a puppy who's excited to see its owner, hmmm, no wonder I can relate so well to my kindergartners! So I head for the bathroom to change clothes and finish what I started. I'm all cleaned up, I head for the kitchen looking for something safe I can take to relieve my cough, when a second coughing jag begins. The room begins to spin, and a second set of clothing has just bit the dust. Now I'm really mad! There shouldn't be an ounce of fluid to create this problem 30 seconds after leaving the restroom, come on! I realize that it's just my body's sense of humor reminding me that it's in control, and until I crown it as my master, it will continue to torment and remind me that it is the boss of me! So I surrender control back to my body, and I promise never to take lightly any medical condition that crosses my path.

I know I'm not the only girl around who has "lost it", I do have friends who have confidentially shared (I promise I won't rat you out!). But I have to know, are girls the only ones with this problem, do guys suffer from this too? I'm sure I'll never get an answer to that question (who would admit to something as humbling as tinkling in your pants, oh yah, I just did lol), but then again, maybe they paid their dews during puberty! Well,it's kegel time!

Humbled and learning,

Job 2:10
Shall we indeed accept good from God and not accept adversity? In all this Job did not sin with his lips.
Lesson: All month God has blessed me with help in my room every single day! I will accept adversity in the same manner as the blessings.

Tuesday, September 21, 2010

Experiencing "Normal"

I woke up yesterday morning with a runny nose and a sore throat. I actually smiled at the thought of being ill with something "normal". Since I work every day with the symptoms of POTS, I figured a cold or allergies would be a breeze! The beginning of the day went pretty much as usual, with just the added nose blowing. Though it would have been much harder without the help of my teacher friend Karen and a parent volunteer. But by the end of the day my body let me know that it was done,fever and fatigue set in. I would definitely need a substitute for the next day. So I went to the office to request a sub, which on this particular day I felt like Oliver begging for some gruel. Or in my words, "Oh please, amazing, wonderful person in charge of all the critical workings of our school, would you please in all your magnificence call a sub for me". My hands quivering as I give her my sub request. I get the look, then I hand her my paperwork and scuffle out of there as quickly as possible. I go back to my room and write my sub plans, which is almost as much work as going in to work myself. Two hours later my sub plans are completed. I'm not sure how understandable they are, but hopefully the sub will make it through the day in one piece!

I get home and cancel my plans for the prayer group that usually comes to my home on Monday nights, and I cheerfully explain to my friends that I think I have a cold. My friend Lisa complements me on my positive attitude about being ill, and I try to explain that it's the first time I think I've had a "normal" illness since my POTS diagnosis. She wishes me a speedy recovery, and I head for bed.

After I hung up the phone I pondered over why having a cold would actually make me happy. What I realized is that having a cold is something everyone can relate to. When you tell someone you have a cold they can go to their memory banks and connect with the typical symptoms of a cold (fever, cough, runny nose, sore throat), and they know it will probably last around a week. I get no quizzical looks from telling people I have a cold, instead I'm told to get some rest, and wishes for a quick recovery.

When I tell people I'm having a bad day with my symptoms of POTS, I usually get a blank stare, and well wishes. There isn't a single person in my daily life who has any idea of what POTS is like. My friends can't go into their lifetime of experiences and relate to what I have. It really is hard to understand an illness that encompasses a system no-one thinks about. No-one thinks about the fact that when they stand up something in their body tells the heart to pump more blood to their head, until that system doesn't work and you stand up and get so dizzy you almost faint. No-one thinks, hey I just ate dinner, I need to send extra blood to the stomach to aide in the digestive process. Not too many people can relate to waking up feeling like you've been chased by a mountain lion, all because your freaky body decided to have an adrenaline rush in the middle of the night for no reason. The average person expects to open their eyes every day and see clearly (unless you have typical vision problems that glasses can correct), blood still needs to be pumped to the eyes so you can see, on a bad POTS day I'm in a blur. No-one thinks to send blood to hands and feet, or what it's like when blood pools to those body parts and they look and feel like stuffed sausages, or the lack of blood flow feels like frost bite. There are no famous people like Michael J. Fox or Annette Funicello to bring a face to this syndrome,and so far I haven't seen epic or a Hallmark movie about POTS either! House has mentioned POTS once in an episode and there was an episode of Mystery Diagnosis that had a POTS patient, but again both shows specialize in rare and unknown disorders. It's funny, because when I was first hospitalized and I didn't know what I had, having so many tests, and the quizzical looks on the doctors faces gave me the feeling of being on an episode of House.

Now add the fact that many in the medical field have never heard of dysautonomia or POTS, can be frustrating. Imagine being in the ER feeling dizzy, heart rate in the 30's and short of breath trying to educate a doctor on your illness. I do carry a computer printout explaining POTS, and the medications I'm on, along with the best way to treat my symptoms if hospitalized. It is a bit odd to walk into an emergency room and tell the doctor to hook you up to an IV and oxygen, and if the symptoms don't improve after an hour to call my neurologist.

I have a cold, my nose runneth over,and I gladly embrace my softie box of tissue. Much better than my POTSy nemesis my porcelain lover.


Tuesday, August 24, 2010

Multi purpose POTS meds, from anidepressants to erectile dysfunction

If you ask anyone with dysautonomia how they feel about medication, you'll probably get feelings that stretch on the edges of both sides of a pendulum. On the one side is the dependence on medications to help us to function, without it many would be bed ridden. Medications that keep us from fainting, barfing, insomnia and fatigue. We can't help but be thankful for the benefits they offer. On the other side of the pendulum, is the side effects of those medications, the inability for those medications to take away all the symptoms and the emotional roller coaster of trying one medication after another to find something that helps us to feel somewhere close to normal. And then when they don't work picking yourself up off the floor, dusting yourself off, put a smile back on your face, only to go through the process over and over again searching for the cure.

Pre-POTS Michele would be totally surprised by the fact that I would ever be dependent on medication to survive. As a young adult I often would refuse to take aspirin when I had a head ache, and even would chuckle at my close friend's family who sold Shakley (a vitamin and supplement business). I remember my friends dad who would explain the benefits of each vitamin in his overflowing fist of vitamins he took daily. In my head I would giggle at the purpose of taking alfalfa, I mean I'm not a cow for goodness sake! Why would a young healthy adult need to take vitamins for anyway? The fact that I survived young adulthood is a complete shock. My daily diet consisted of a carnation breakfast shake in the morning, a happy meal (cheeseburger, french fries and a coke) for lunch, and a brownie and coke for dinner. Who needs vitamin supplements with a diet like that.

Now old Michele is still resistant to being on medication, but the realistic Michele knows that I need them to function. Having a disease that so little is known about, makes it tricky for doctors to prescribe medications to treat it. Many of us feel like Guinea pigs, testing one medication after another, only to watch our bodies baulk from those that don't work. For me, when I hear about something new that the doctor wants to try I've become optimistically cynical. I dread putting my body through the possibility of negative side effects, but optimistic about the possibilities that this could be the one that works.

I was recently given the news from my general practitioner that she reviewed my case with a doctor from the Mayo clinic, he gave her some recommendations for my treatment for POTS. The recommendation was for a new supplement that would help with the treatment of the vascular issues of my POTS symptoms. She chuckled as she explained that this supplement was commonly used in patients with erectile dysfunction. To sound professional she immediately went into explaining how the supplement worked on my vascular sytem and gave me a dose recommendation. When we hung up the phone I had to laugh, it seems that many of my medications I take have multi-purposes. I take an SSRI which is mostly used as an antidepressant for vascular issues and now this new supplement for erectile dysfunction which is also being used for vascular issues. I did my homework on the supplement, and the information from WebMd seemed to put a positive light to the supplement, so I decided it was worth a try. The good news is, it's been a week and a half on the new supplement, my body has not rejected it with it's common symptoms of nausea, vomiting or digestive tract issues. Though I am experiencing a strong desire to listen to old school '80's music and a craving for milk duds. On the positive side I'm experiencing less if no fatigue, and I seem to have more energy at the end of the day.I will consider this a victory if I continue to feel the same after three weeks. It makes me wonder how many other drugs are out there that are used for something else that they may find could help my condition. Maybe that anti-fungal pill might actually work on my nausea, who knows.

Always inspired,

Monday, August 16, 2010

Michael Jackson, Howard Hughes and Me!

What could I possibly have in common with Michael Jackson or Howard Hughes? It's definitely not the money or fame. I can't dance (though my inner diva sometimes believes I can) or design aircraft. The commonalities may seem illusive, but they're actually reclusive. All three of us have different reasons for choosing to be separated from society, each of us has made a conscious choice to be alone.

I should be disturbed by the fact that I don't have a problem with spending most of my time alone. It was only a few months ago that I wrote the blog "Friendship and Chronic Illness", where I seemed upset with my new lifestyle, where being alone was not a preference, but a byproduct of being chronically ill. Now being alone is as comfortable as a good book and my temperpedic bed.

The way I see it, being home is safe and easy. It's the one place I can control. If I need to put my feet up I can. If I'm hot I can turn on the air conditioning. If I'm hungry I can eat. It's quiet in my house and my kids enjoy the peace as well. It's a stress free environment. If I feel faint or nauseated, there's no one around to feel embarrassed about my condition. At home I can just deal with it with no explanations.

Going out has become work, and my constant brain fog has caused me to forget things like water to keep me hydrated on my trips out. I know I could make a check-off list, but to be honest I've kind of stopped caring. I'm like that diabetic teen who eats that candy just because they're tired of diabetes hanging over their head. I often feel trapped by the outside world. Yesterday I was sitting in church, the noise, getting up and down and the excitement level pushed my symptoms to veer its ugly head my way. But that's nothing compared to the feeling of sitting in a pew while my heart rate dips to 30 then followed by an annoying adrenaline rush that sends my heart rate soaring to 160. I can't leave or I might faint, all I want to do is lay down and wait for my heart to calm down. Now I know my dear friends would be fine with me laying down on the pew next to them, but most of the church is aware of my condition and I really, really don't want to bring attention to myself. At home I can lay down like a dead fish out of water and no one knows I'm floundering!

Reading a book, watching TV or sitting at my computer would have never been on the top of my free time list before POTS, but I've learned to settle for this almost reclusive lifestyle. I do have a few exceptions that seem to fit in my comfort zone. I have an amazing pair of friends who come to my house once a week for sharing and prayer, and a once a month card making night. I will continue to push myself to go to church, God calls for us to commune with one another and I know I can't do this alone. Now if I become a horder and my home unlivable and you don't see me for weeks, please do an intervention.

Always inspired,
Michele the hermit

Saturday, July 31, 2010

Fear Factor Tachycardia/Bradycardia

If you had asked me two years ago what tachycardia or bradycardia meant, I would have shrugged my shoulders and given you a puzzled look. Now those two words are as familiar as chocolate ice cream and cream puffs. For those of you unfamiliar with their meaning; Bradycardia is defined as a resting heart rate of under 60 beats per minute, though it is seldom symptomatic until the rate drops below 50 beat/min. It may cause cardiac arrest in some patients, because those with bradycardia may not be pumping enough oxygen to their heart. It sometimes results in fainting, shortness of breath, and if severe enough, death. Tachycardia typically refers to a heart rate that exceeds the normal range for a resting heart rate. It can be very dangerous depending on how hard the heart is working and the activity. Normal heart rate is usually 60-100 beats per minute.

I thought I'd share what goes on in my head when I experience my friends bradycardia and tachycardia (I often refer to as brady and tachy). I could be reading or watching TV, when I begin to feel a thump in my chest and a ticht squeeze in my heart, a second or two later another strong thump, it's a strong slow steady beat of my heart against my chest. I figure because I am resting I must be experiencing brachycardia, so I check my watch that has a heart rate monitor, and sure enough I have a heart rate of 54. I'm thinking, hmmm not too bad but something to pay attention to. The thumping soon gets further apart, and I'm beginning to breath a little faster, my lungs burn and I feel a bit dizzy. I check my monitor, it reads 46. I begin to worry that my heart may just stop. I'm feeling worse and my monitor says my heart rate is 39 and fear sets in and I begin to wonder if I'm going to survive this one. Next thing I know I feel an adrenaline rush, and my heart starts to pick up; 47...58...72...94...110...143...157, now I'm wondering if my heart is going to explode! My arms and legs are tingly, my heart is beating through my chest quickly, and I now wonder if I'm going to have a heart attack! In five minutes my heart rate has gone from 39 to 157, now the chest pain begins because my heart has just had a work out. Again I wonder if I should be worried, I think to myself "I always survive these radical episodes, maybe there's nothing to worry about?" But then another part of me says "What if this is the one time I shouldn't ignore it?". Those two opposing thoughts have very different consequence. If I went to the hospital every time my chest pain was practically unbearable I'd be there every day, but one of these days my heart may just decide it's had enough and ignoring it could be fatal! I know I've survived this so many times I often chastise myself for worrying, but I'll be honest, it's just plain scary!

I have so many dysautonomia friends on facebook. They are the most brave and couragous people I have ever met. They often laugh and push through the pain they live with daily. On occasion one of them will share on their post that they are experiencing extreme heart rate fluctuations and I can usually feel that twinge of fear in their post. I often fear for them as I fear for myself, will this be the one time bracycardia or tachycardia goes too far? Will my friend survive this episode? All I can do is pray for them and give it to God as I do every time I experience it for myself.

Always inspired,

Thursday, July 29, 2010

The Happiest Place on Earth!

If you you live in Southern California you might think that Disneyland is the happiest place on earth, but for the rare few like myself, that's not the case. I was kidnapped last year for my birthday, and my awesome friends thought a visit to Disneyland would be the perfect gift! The time at Disneyland with those friends was absolutely amazing, but I personally don't get the draw to the place???? I just don't get how spending long periods of time in line to see the same dolls sing "It's a Small, Small World" over and over could possibly be exciting. The pirates are still chasing woman around and around and the ghost in the "Haunted Mansion" still plops himself next to you at the end of the ride. The balloons, hats and food are still the same as they were 40 years ago when I visited there as a child. Now I could be a bit jaded because I've been there so many times, and that may be the reason it has lost its magic for me. Though I do know people who go quit often and love it there.

I'm sure many of you wouldn't be too shocked to learn that my happiest place on earth would involve some sort of shopping. The middle of July was my favorite stores annual anniversary sale, woohoo! The catalogue for the sale comes a week before the sale, so I have a full week to drool over the shorty black swade boots, the Michael Kors pencil pants and Nine West blazer with the leather patches on the elbows! I decided I would take this slowly (the sale lasts three weeks), making a few trips and pace myself would be a smart way to approach it.

My first trip would be the shoe department, I can't imagine anything lovelier than a half a football field size space filled with nothing but designer shoes on orderly displays sorted by style, sigh. I've decided to shop for boots for my first visit, and had my selections ready to show the salesman. So I walk into the shoe department and after placing my eyeballs back in their sockets, and getting my heart rate back down to a semi normal level, I show the salesman my selections, and explain that I can't do to much shopping because of a medical condition. I tell him my size, and he heads to the back, he shortly returns with a plethora of boots for me to try on. I give him an appreciative smile and try on the studded black swade shorty boots with the big buckle on the side. They fit like a glove and I place them in the purchase pile. The salesman then pulls out a pair of very cute Frye boots for me to try on (they weren't on my list, but definitely too cute to pass up). I place my foot in the boot and I can't get my foot into the boot, I loop my fingers into the pulls on the side of the boots, and I can feel the energy zapping from my body. The next thing I know I've fallen to my side panting like a fish out of water. The salesman's eyes are now the size of saucers, and he asks if I'm OK. I show him one finger hoping he knows I just need a minute, I push myself slowly back up and try to compose myself. I look around and see all the lovely shoes, and I'm back in my happy place. The salesman recommends that I try standing and push my foot in, I really like the boots and give it a try. I stand up and bend over to reach for the pulls of the boots, that's when the room starts swaying and I fall forward, right into the poor salesman. He steadies me, and I fall back onto the couch. He gives me a concerned look and I immediately get the feeling he thinks I might be more trouble than the commission he could get from the sale. I smile and give up on the very cute boots, I'm thinking if my skinny foot doesn't fit, I can only imagine trying to get my BFF to fit! I explain to the salesman that if I have to go through this much trouble trying to get boots on in the morning, I would be too exhausted to go to work. He gives me a sympathetic smile, and I suggest something with a zipper. Another pair of darling knee high boots come out of the box and I am back in my happy place! The boots fit like a glove, and I place them in the purchase pile. I'm done for the day, and hand him my ATM card and purchase the boots. I head home with a gratifying smile on my face.

Round two is a planned shopping trip with my mom and daughter, first stop is the Nordstroms shoe department of course. I'm in need of a new pair of dress shoes and my mom and daughter want to try some things on as well. We've taken my wheelchair this time because we're planing on hitting several stores in the mall. I find a cute pair of patten leather flats to buy, and as I'm waiting I see a cute pair of leopard print flats, but ignore them because I don't really have allot to wear with them. My partners in crime also find very cute shoes to purchase, and we head up to the woman's clothing department. I find 3 pairs of the Michael Kors pencil pants, and make my purchase. I am now wishing I bought those cut leopard print flats, but I'm not going to drag my family back to the shoe department again.

We head out to the mall and go directly to my favorite lingerie store, Victoria Secret. I have a coupon for free panties, and it's a pretty place to shop. My 70 year old mom has never been there, and she picks up some thongs and pasties and heads for the sales counter, telling everyone she passes what she's purchasing. I turn several shades of red, and I hold on tightly to my shopping bag they let you use to conceal your purchases, in fear that my mom will show everyone my adorable yet very private pair of lace panties! We thankfully head out the door, and finish the rest of our shopping without any more embarrassing incidents (though my mom did tell the waitress we were eating lunch at about her special purchase).

Round three, last trip to my favorite store before the sale is over. I get there a few minutes early and too anxious to wait. I decide to walk around the building looking for the mall entrance. It's farther than I planned, and by the time I was in the store my heart rate was 117 and I was out of breath and shaking! I find a couch in the shoe department and lay down. I'm sure I looked like a drug addict or alcoholic, but I'm beyond caring at this point. A kind salesman sees me (the same one that helped me when I was with my family last week). He asks if I'm OK, and I tell him I just need a minute, and he asks where's my wheelchair. I explain that I usually don't need it if I'm just gong to one store, but that I stupidly had taken a longer route to get into the store and that I'd be fine in a minute. He waits quietly and I am quickly revived by my wonderful surroundings, the shoes are calling my name and the smell of fine leather is working its magic. I explain to the salesman the shoes I'm interested in and where I saw them last, and he heads back to get my shoes. He brings back several styles for me to try on, and I'm back in my happy place with a darling pair of Calvin Klein leopard print and patten leather flats!

The happiest place on earth is now my closet. I open the door close my eyes and smell the Italian leather and imagine all the possibilities. Happiness is all a matter of perspective.

Always inspired,
Shoe Diva Michele

Friday, July 16, 2010

Stressed Test

Woohoo, survived my much dreaded stress test. It should be called "How stressed can you get test!" The stress for me began two weeks prior, when the doctor told me to schedule the test, and I'd need to go off my medications two days before testing. I haven't been off all my meds since I was diagnosed two years ago! The thought of barely being able to walk, having blue lips and being bed ridden came merrily dancing in my head! Then I started having fears of the test itself. I began to wonder, if I pass out, will someone turn off the machine before it throws me across the room? Now mind you, I do have a bit of an imagination that tends to get carried away a bit. I kept seeing those cartoon figures (me inserted) being thrown across the room by the conveyor belt thing you walk on. Then I remembered my last test in which I had been on my meds for a week prior and was in the best physical shape a 48 year old woman could be in. At the time, yoga and exercise were a daily activity for me, so peddling a stationary bike was no problem back then. Two years later and my muscles are the consistency of wet toilet paper, weak and squishy! So this test is definately going to be a bit more challenging than the last time.

So being the control freak that I am, I begin to plan out my day for the test. I figure if I have some control somewhere, I won't freak out too much. NOT! So I call my friend Von to come with me for my test, I inform my prayer partners and bible study group to pray (I'm praying as well). I plan to wear my very cute workout outfit that never gets a work out. I realize the morning of the test that they have they're own version of workout clothes there, so I decide to wear something cool and comfortable instead.

It's the day of the test, and I'm feeling pretty yucky, but thankfully not as yucky as I thought I would. My friend picks me up and we have a nice visit before the test (I highly recommend bringing a friend, it was the best part of the day). I'm called to the back and led to a room with the treadmill and the Frankenstein machines. I'm told to strip down and put on the attractive oversized gown, and to please wear the gown with the opening in the front! Why bother wearing a gown at all. I'm now wearing the sheet with armholes with "my girls" peeking out the front, and looking at the treadmill and thinking "I'm definately not dressed appropriately for this machine!" and, "I'm truly missing my cute workout outfit and it's missing an opportunity to get its first workout since it was purchased a year ago." The technician comes in and begins attaching sticky electrobe circles on my bare chest, and I don't even know her name! She begins with an echocardiogram, and starts talking to herself, then she asks me "how long have you had mitro valve prolaps?" my answer, "mitro what?", she repeats the question and I respond with "two minutes?" she laughs and says, "oh this is your first echo then?" I respond, "no, I've had two before this, so I guess this just developed", she responds, "no you're usually born with this.". The room is silent, because my head is thinking why wasn't this found before, and what the heck is a mitro prolaps valve (found out on webmd that it's no big deal, but it sounds kind of serious when your all wired up to a bunch of machines). She finishes the echo, and then begins attaching more wires to me along with an attractive belt that the wires are attached to. The doctor comes in and asks me to step on the treadmill machine. The machine starts, and after a minute I begin to feel like I've worried for nothing. Next thing I know the doctor says "how odd... are you double jointed?" I answer "yes in a few places, but not everywhere." he asks me to do the thumb trick, whick I can do, but I have now lost balance and trip on the machine. The doctor sighs and realizes he's working with someone who can't chew gum and walk at the same time, and stops questioning me. The machine begins to tilt up and speed up, I'm a little out of breath, but I'm doing fine, then the machine slows down and my heart begins beating through my chest, the doctor mumbles, "that's an odd time for adrenaline to kick in!" and I giggle in my head (odd is how I'd sum up my symptoms). I begin to get dizzy, and inform the doctor, and he responds with "can you go just a little longer?" In my head I'm screaming NO, but unfortunately I'm just trying to stay upright and I'm seeing spots and I know I'm going to go down any second, so I finally say "no, I'm really dizzy", he says "just a little more time!", I'm ready to drop, and I whisper "stop", and I let go of the machine and he stops it, and I drop. The doctor and the technician don't seem too surprised by my behavior and they tell me I need to go to the examining table, and I'm thinking just give me a minute guys, but they carry me impatiently to the table and the technician begins doing another echo. I guess my little episode was keeping the technician from getting another picture of my heart. So sorry I got in your way! They finish the test, and the doctor mumbles about rescheduling another appointment, and tells me I'm a bit out of shape as he heads for the door. I giggle in my head, because I'm too fog headed and too shocked to speak, I'm also wondering how in the heck he expects me to get a workout when I nearly faint every time I pushed my body in the slightest bit. Unfortunately the doctor can't hear what I'm saying in my head (that might be a good thing lol), and he leaves the room. The technician tells me to get dressed and to take my time, and she leaves. I'm still dizzy and out of breath, and the examining table is beginning to look like a really good place to take a nap. I rest for a while, get dressed, take my overdue meds and head for the appointment desk. The receptionist is busy, and after several minutes she begins to reschedule my appointment, at which time, the room begins to spin, and I make a b-line for the floor before it's too late. The receptionist peaks over the counter and asks if I'm ok (and I'm thinking to myself, I'm on the floor, does it look like I'm ok, but maybe people plopping to the floor is completely normal for this paricular office) so I respond with just a bit dizzy, I'll be fine in a few minutes. She finishes making my appointment (so I guess it's normal for people to plop down on the floor here), and she hands me my appointment card and walks me to the door. As I walk out, I think to myself, this went much better than I thought it would. I had visions of passing out, and emegency rooms with sound proof rooms that I might get lost in! Any day not spent in the emergency room is a very good day to me!

Always inspired,

Monday, July 12, 2010

No Parking

It's days like today that I'm fully aware that God has a sense of humor, and I believe it's my purpose in life to make Him laugh! I'm beginning to believe that my life with dysautonomia is script for a new sitcom. The jist of the comedy is to see how many strange and funny situations you can put a chronically ill middle aged woman in.

It's a typical day for me, another one of many follow up appointments for my BFF (Big Fat Foot). I'm fully prepared, ice vest in ice chest, water, salty snacks and a good book to read during my typically long wait in the waiting room. I arrive at the parking lot 10 minutes early, only to find a line into the lot 50 cars long (exaggerated number, but 50 sounds much better than 12). When I finally pull into the lot there's a sign that says "Lot Full". Now how can a hospital parking lot possibly be full? My mind goes into typical "Michele" mode, I can't be late. I can never understand why I worry about being late for my doctors when they are always late for me. So I'm thinking I can park in the street somewhere, I've totally forgotten the fact that I have a handicapped parking placard, and I all want to do is make a b-line out of the lot. Unfortunately I'm behind an elderly woman who's afraid to move forward or sideways and seems to be struggling with a decision as to which direction she should go. Bingo, she makes a decision, I can see her backup lights heading straight for my front bumper! She decides to go backwards. I'm thinking as she's backing up that surely she sees me behind her, and that she won't run into me. As she gets closer I begin to worry and I take a look in my rear view mirror and notice that the car behind me is just inches from my rear bumper, and there's nowhere for me to go. Then BONK, sure enough she bumps into me! We both get out of our cars, and survey any damage, both cars are fine, but I'm experiencing an adrenaline rush and racing heart rate. I get back to my car in hopes to finally get out of that lot and into a spot somewhere not too far.

I find a parking spot two blocks away in a lot that says "City Water Building, No Parking unless you have official business". I'm thinking I'm two blocks away from my doctors office and I don't care what the sign says, I'm going to be late and this is the closest parking spot I can find. I have a handicapped parking placard, so I'll take a chance. I grab my bag and hurry to my appointment. There's a cool breeze and I'm thinking I should be fine. I walk a block and feel winded, I walk past the hospital entrance and feel dizzy. I'm only a building away, I tell myself "you can do this, you're almost there keep going". I walk about fifty steps and I'm very dizzy, everything is tilted, I can feel my heart beating through my chest and I'm short of breath. I know I can't go any further so plop myself on my butt, and place my head between my knees, I'll just sit there until I feel better. NOT! I didn't realize it at the time, but I guess I plopped myself right in front of the emergency room entrance! Now I couldn't find myself in front of the gift shop or the vending machines, NO, I end up in front of an Emergency room! Now in my head I'm not very worried about the physical state of my body, this is typical pushed myself too far, and I need to rest and I'll be fine mode of thought. But to someone looking at me in front of an emergency room door, I'm sure I looked totally different to them. A woman came to me and asked if I needed any help, I said "no" of course, but I guess that answer wasn't good enough for her. She replied you look terrible let me get you some help, I shook my head no, but she was insistent. Next thing I know there's a big burly orderly in front of me with a wheel chair trying to help me up. It's then that I realize that I'm sitting in front of an emergency room door "Oh no!". If you've read my blog on my last visit to the emergency room, you know this is the last place I want to be! In my head I'm panicking because I'd rather die than be left in some sound proof room lost for an hour, with medical personnel who know little or nothing about my disease! Now I'm still dizzy, my heart rate is 140, my head is foggy and I knew I wouldn't be able to say anything coherent for at least five more minutes. Now there are a few people standing around me, and I'm thinking this is bad. But I manage to tell the orderly that this is normal for me, please give me a few minutes. I'm left alone with this kind man who waits patiently by my side and after about 5 minutes I begin to feel a little better, my heart rate has dropped to 95. I tell the orderly thank you, and that I have dysautonomia, his response; "I've never heard of that before", I giggle and say "not many have". I slowly try to get up, and tell the orderly thank you. He asks me, "Are you sure you'll be OK?" I tell him "yes" and head for my doctors visit, because now I'm late!

By the time I get to my doctors office, I'm dizzy again with all the symptoms I just experienced in front of the emergency room. The nurse says "your late!" I shake my head in digust and try to sign myself in, but the page is blurry, the nurse shoves another paper in front of me and says you need to blah-blah-blah, I can't make out anything she has just said to me, I give her a confused look initial something she is pointing to, and plop myself into the nearest chair. I curl up, close my eyes and try to get myself back to normal. The nurse says something to me, and I don't respond and it's then that I guess she realized something is wrong. A minute later she is helping me into an examining room where they check my heart rate and blood pressure, which are both through the roof. The doctor comes in, and I remind her that these symptoms are normal and will probably get close to normal shortly. She asks what brought it on, and I explain about the long walk because of the parking situation, and she lets out a moan and explains that there is another parking lot around the corner with a shuttle service to this building. I giggle again, and she gives me a "she must be losing it" look", and gets on with my BFF issue. She can't figure out what's wrong with my BFF, and refers me back to my rheumatologist, so I'm back to square one again. The doctor has the nurse call for a shuttle, and the shuttle guy gives me a ride to my car. I explain what lot it's in, and he responds "oh no, I hope it hasn't been towed away, they're always towing cars from that lot!" I giggle again, because it figures. I get to the lot and woohoo, my car is still there, better yet, no ticket!. I thank the driver and head for home.

As I begin to ponder over my latest explerience I think maybe the humor thing might be the other way around, I'm sure God is putting me in these crazy situations to make me laugh! Who knows, maybe I'll write my own sitcom. Now for a title, Dysed and still laughing, or maybe the silly adventures of dysgirl. Hmmm I'll have to work on that.

Still inspired,
Dysgirl Michele

Thursday, July 8, 2010

CyberVille to CreateVille

I had been looking forward to summer break since about the beginning of June. I wasn't in a big hurry because I had one of the most amazing groups of students ever, and I knew this would be the last time I would have only 20 students in my classroom for a very long time. But the exhaustion from the end of the year activities and requirements for testing, cums, packing up and report cards had completely exhausted me. I'm still shocked I made it through my last week of school, I was so symptomatic and should have been in bed.

I had very few plans for the first week of vacation, I knew I needed to rest, and rest I did! I stayed in bed and read a good book, I spent time on Face Book making comments and posting status's. Things were going well until a sweet friend sent me a neighbor request for a new game on Face Book. I had made a decision to quit these games several months ago. I had decided to quit for two reasons. The first was keeping up with my farm was exhausting and required me to check it every day and this commitment was beginning to feel like work. The second came after a dear friend was leaving on a business trip and asked me to tend her farm while she was away. When she asked me I giggle and in my head thought "poor thing, she's worse off than I am!". The first day I harvested her crops that were ready on her farm, tended to her animals and harvested her fruit trees. After doing hers and mine, I was fatigued and feeling a little resentful (I was working at the time and very tired). The second day I finished harvesting her crops and I tended to her animals (I stopped harvesting the fruit tree, because nothing bad happens if you don't). On the third and final day I tended her chickens and that's all, I was done. I realised then that FarmVille had become a chore and I was no longer enjoying the activity, so I quit. I never felt the desire to return, and I began spending some of that time uplifting friends and connecting more with my family.

These games are so appealing, and you can tell this type of gaming is focused on woman. The characters are cute, they have big eyes and sweet smiles. The player gets to design their avatar choosing hair color and style, eye shape and color etc. The game begins with simple tasks and gives rewards for each task completed. Often times you are rewarded with coins so that you can purchase more items for your game, and bingo, you've been hooked. Being able to get more stuff is a natural human desire. The one with the most stuff wins! Then there are the collections, another opportunity to get more stuff, unique stuff! It's so appealing.

Now take someone like me with a chronic illness, who has been forced to give up on many physical activities such as gardening, hiking, socializing and Mall shopping, and these games look even more appealing. Take FrontierVille, in this game you get to chop trees, build a town, plant and harvest crops, clobber bears, snakes, foxes and gophers, clear land and tend to the cute farm animals (I liked the geese the best). I had a cute little family (little Bella and handsome Edward)who shared my farming tasks. We were the perfect little family, we worked together with smiles on our cute little faces, there was no complaining about doing chores and we all got along without any arguments! Now add the chance to help friends on their property and you have a game that allows you to do all the things you can't do or are too dangerous to do in your own life. For example, during my last week of work my friends were packing up their rooms because their assignments in the school had been changed. I so wanted to help them, but could barely survive my normal day. I felt so useless, frustrated and angry that I couldn't be there for them. These games allow you to help your friends with very little effort, and accomplish tasks without sending our bodies into physical chaos.

Now add our daily symptoms to the mix, fatigue, nausea, head ache, brain fog, irregular heat rate and blood pressure, pooling, swelling and pain and these games are so easy to love. You can just sit there on a bad day, and with little effort at least accomplish something when you can barely keep a glass of water down and walking to the bathroom may result in passing out.

I'm very goal oriented though and at first these games satisfied that part of me, but in the end I had nothing tangible to show for my time spent. I needed something to prove that I am accomplishing something during my day. The challenge was "what could I do with my time when I'm feeling sick?". This vacation from gaming had forced me to re-evaluate what I still can do during my free time. I did allot of scrap booking before my former husband left, I had stopped because the pain of going through family pictures had become emotionally unbearable. I had put my scrap booking material in the back of my closet and hadn't touched it in four years. The pain of my past is over, and it's time to get those books out and finish what I began many years ago. Once I set up a corner in my dining room with my scrap booking materials, scrap booking will take very little effort and there will be so much to show for my time spent doing it. The second thing I re-discovered was my love for making cards. It's another craft that allows me to be creative and takes very little physical effort. To top it off, I've decided to have a little card workshop at my home. Once a month I can enjoy my past time with my friends. There's nothing better than a group of friends getting together, making cards, laughing, sharing and then enjoy a nice lunch afterwards.

There's nothing wrong with computer gaming, we all need a little time to gel out in front of the computer. I just needed a little balance, I still get on my computer several times a day when I'm home. I check on friends and post my status, but I'm balancing my time with other activities when I'm home and not feeling well. It's giving me a sense of accomplishment for how I'm spending my day.

Still inspired,
Cracked POTS

Thursday, July 1, 2010

You Look Sick

I'm sure in teen circles the term "you look sick" would be considered a complement, but coming from my former husband, I interpret it to mean "God Michele, you look like death warmed over". To be honest, I'd prefer to be caught in a slammin'outfit, hair done and flawless make-up. Mainly because I would prefer that he left my home saying "Wow she looked good, maybe I should have never left." Now this is truly my own unrealistic fantasy within my twisted head, so please excuse my temporary delusional thinking.

Today was one of many typical POTSy days (nausea, dizziness, fatigue). So I'm in my sweatpants, old t-shirt, hair sticking out in every direction, no make-up and I'm an odd shade of green. I hear a knock on my door (I'm thinking it's probably a salesman and I'll scare them away with my green tint and a kind warning that I may puke any minute), I open the door and to my surprise it's my former husband. He takes one look at me, steps back and says "You look sick, is this one of your bad days? I nod, invite him in and we have a polite visit. As he's leaving he does tell me he's sorry that I'm feeling so bad, and heads to his truck. To give him some credit, I did get the feeling he felt badly for leaving me to deal with this illness alone. I now look at his decision to leave as a good one for both of us. I know I would be worse off if I had to deal with the stress of a one sided marriage.

How I appear to others has always held some importance to me (now I'm very average looking but enjoy trying to look my best). Having POTS has altered my thinking about appearance a bit. I still try hard to look my best, even if I feel awful. I don't know what I'd do without my liquid foundation, it can conceal just about anything! I use to get a bit upset when I was feeling very sick and people would complement me on how good I looked and that I didn't look sick at all. After someone would tell me I didn't look sick I'd have this secret internal dialogue shouting back at them, "can't you see I feel awful". I now take the sentence "you don't look sick" as a complement of the good job I'm doing to hide how awful I'm really feeling. Not looking sick takes the focus off being sick (which encompases just about every waking minute for me). It helps me focus on conversations about others and away from my illness.

I'm also learning that if someone catches me on a really bad day, and I look as sick as I feel, that that's ok too. This new comfort in appearance is extending to my obsession with having a neat and tidy house. If I'm not up to doing the dishes, and there's a stack of dishes on the counter when a friend comes over, who cares. I don't change my opinion of them if they have a few dishes on their counter, so why get all Susy home maker on myself. Life is too short to be so hard on myself.

Still inspired,

P.S. I sitll don't get why the former husband just drops by my house unannounced, and I've never once desired to go to his. He left me, so why does he keep coming back?