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.

Inspired,
Michele

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!"

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.

Blessings,
Michele

More

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,
Michele

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.

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.

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,
Michele

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.

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,
Michele

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,
Michele

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