We shaved our heads today....for a great cause!

I am shaving my head today!

Today I will Rock the Bald!
In just a few hours I will be shaving my head to raise money for childhood cancer research! Thank you to those of you who have already donated. For those of you wishing to donate, there is still time. Today at 1:00 p.m. Eastern time, please join me live or you can watch the recording that I will post.

If you would like to make a cash donation in person, please let me know. I have enveloped from the St. Baldricks Foundation to send those in.

Online donations can be made here:

https://www.stbaldricks.org/participants/mypage/933092/2017

Thank you for supporting childhood cancer research.

Let's take childhood back!

Chronic Illness and Evacuation | Why I decided to stay in Florida during...

With Hurricane Irma about to bear down on Florida, there has been what has become known as the largest mass evacuation in U.S. history, out of the state of Florida.

Many chose to stay, however, and many have received backlash from their choices.  For those of us who have chronic illnesses, evacuating may not necessarily be that easy.  I convey my reasoning in this short video.












Disaster Information for People with Disabilities and Chronic Conditions

Has life ever put you in a new place?

When life puts you in a new place as a result of a chronic illness, or a traumatic situation, throughout the process remember to dig deeper, and you will find the passion, the power to heal, the purpose for which you are suffering through this moment. 

• The Truth!
• It will be a challenge, but it will be worth it!!
• Take care of the basics.
• Take time to re-energize.
• Start thinking proactively.
• Stop thinking negatively.
• Take care of the body.
• Take care of the mind.
• Surround yourself with positive influences.
• End toxic relationships, if necessary.
• Move to a new area, if that will help.
• Strike a balance between your old life and the new you that you are trying to create.
• Cultivate passion and purpose through perseverance!

Click on the link below to watch the video and read the balance of the newsletter.

Has life ever put you in a new place?

My POTS symptoms September 2nd, 2017

I am still learning about this syndrome called POTS.  It's only been a few months since my diagnosis, but I still seem rather clueless about my symptoms.  The day I was diagnosed was rather vague.  I had a lot of really big words that sounded rather like BLAH BLAH BLAH a my cardiologist spoke to me about my diagnosis.  The last thing I remember hearing him say was that we should really just try to make life as comfortable as possible from here on out.  I also remember hearing that this was the cause of my "exercise intolerance" and that heat intolerance would become gradually worse.

When I returned home, I really began to do some research, but I still couldn't determined what symptoms were POTS, which were lupus and which were neuropathy or related to some other condition. 

I decided to write about my symptoms today because it has been an interesting day.
My youngest son and I decided to visit my oldest son and to spend some time at the pool with my granddaughter and her great-grandmother.  It was while there that I remember hunting out every drop of shade that was available.  When the sun touched my skin it felt like tiny bits of hot coal burning into my skin.  You can only imagine how frustrating this is being an Island Girl....born on one island, grew up on another and love being in the sun......but today was unbearable.

To top it off, when I returned home, I couldn't seem to keep my eyes open.  Fatigue hit me like a ton of bricks and before I knew it I had slept for about 3 hours.  That my not seem like much, but to me that is like an eternity.  

A thunderstorm passed through while I was sleeping, but the worst of it was after I awoke.  Every joint in my body seemed to ache.  I couldn't walk without feeling like I was walking on pins and needles.  The pain shot through my feet like the bolts of lightning which shot through the sky as the storm passed outside.

My head "caught fire" a few times.  Well, not literally.  It just feels like my head is on fire, but I don't perspire, and it is only my head.  After doing some research I discovered that POTS patient report this, so it seems to be a common symptom of dysautonomia.

It is 4:45 a.m. and I am wide awake, probably because of the long nap, but sleep eludes me lately.  Even if I go to bed at 10:00 p.m. I still wake up several times during the night, and get up at 6:30 for my morning ritual of going outside to walk through the garden.  It is the only time that i go go outside without the sun scorching me.

As I type this, my fingers lock up periodically.  I attempted to play the keyboard yesterday and my fingers just couldn't cooperate.  It is the first time that I actually came close to crying for the loss of possible loss of the ability to do an activity.  I was introduced to the piano at a young age, and studied classical piano until I was close to 18.  Over the last few years I did not play as much due to illness and work and parenting responsibilities.  It is only now that I am beginning to appreciate truly the possible loss of the use of my fingers and hands.

I remember growing up and seeing my grandmother rubbing her fingers from time to time.  I was aware that she suffered from arthritis, but never truly understood what that was doing to her body. I have decided to document my daily symptoms in the hopes that I can track what my most common ones are, and also hope that I can learn of triggers, if any.

What are my POTS symptoms today?

1. Abdominal pain
2. Bloating
3. Difficulty regulating body temperature
4. Dizziness
5. Fatigue
6. Hearing loss/ringing
7. Chest pain
8. Insomnia
9. Muscle fatigue
10. Joint pain
11. Numbness/tingling limbs
12. Palpitations
13. Shortness of breath
14. Tachycardia
15. Weakness overall

Well, it is nearly 5 a.m.  I should probably try to get at least an hour slep, considering that I will be getting up shortly...again.

See you next time.

Thanks for stopping by...