Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts

Friday, January 28, 2022

How To Get Access to the 1st Class of the Adaptive Stretching Sparkle Session

 Hi!


Last week I had the first adaptive stretching class and it was so fun! We did a live version and then I recorded the same class so that all those that couldnt make it could access it.  

And it's available to use over and over again!


 

To get access to the class, I am asking for a $10 good will offering.  How to gift that is below.  Once received, I will follow up with the link to the video.


Stay tuned for more classes!!


To gift:


Venmo: @Eliz-Martin-27

Amazon gift card: link here.  Email: elizmartin001@gmail.com

Starbucks gift card: link here.  Email: elizmartin001@gmail.com

Monday, November 22, 2021

The Sparkled Life - Holiday Gift Guide

omg I havent used this blogger platform in FOREVER.  feels like old times.  so cute.  holiday gift guide...let's do this.


if you're anything like me, the holiday gift season is the most opportune time to ask for all those "adaptive and sick and fabulous tools" that just dont make it in to the budget during the year.  so many people will ask "where did you get this fun tool?", to which I very kid like respond: "SANTA!". 


but for real, whether you're building a list to give to santa for yourself, or looking for gifts for a sick and fabulous loved one, below are a few tried and true fabulous gifts that I'd highly recommend. 



the amazon holiday gift guide 

the bike, the ice roller, the LOVED BY EVERYONE ICE PACK, you cant go wrong with anything on this list.  

everything on this list I own, have used for years, and are worth the investment.  I included the shower wipes because theyre actually (not surprisingly) the most popular item in the community.  literally, theyre amazing.  dont skimp on them!




just the comfys holiday list

bombas socks.  the little compression in the regular socks feels like a hug on your feet.  its gentle and rewarding. 

if you want something more compression-y, highly suggest their compression socks.  I wear them almost daily.

SOMA!!! omg there isnt another brand I love more.  

their cool nights pjs are amazing all year long - theyll keep the night sweats away while also keeping your body temperature regulated.  they are the only brand Ill wear to bed.

the bra - i know a bra for the holidays really? yes, really.  its the perfect bralette - its comfortable, easy to put on (key!!!), and attractive.  I own more pairs that I should admit.  theyre truly amazing.




the small business guide

(I know I probably forgot some good ones but these are my 5 go tos I use almost daily)

koldtec - the wearable ice pack.  it's a classic.

the embr wave - who doesnt know temperature regulating technology? the cold feels like an ice cube to the wrist and the warm (my favorite of the two) feels like warming your hands by a heater/fire.  

releaf pack - they're cute, they mold to what hurts, and they stay freaking cold. I sleep on these (legit, under my head) every night.

yuyu bottle - i have two of these, the hot water bottle and the sport ice bottle.  damn, I just love them.  the hot water bottle stays warm for 5-6 hours and is much safer than a heating pad! the sport ice bottle - again, another thing I sleep with every night.  I keep it in bed by my feet just in case they are burning.  it stays cold throughout the night.  its amazing. 




the extras

things you cannot go wrong with when buying for your sick and fabulous friends: the gift of convenience.  I use both shipt and instacart every week. you can gift someone a subscription for a year of free delivery.  let your loved ones stay home away from germs and do all the shopping from the convenience of their phone.  

Instacart referral link:

Shipt referral link:


and then of course, any starbucks giftcards, delivery.com, grubhub...they may seem basic but any reason to just order something instead of having to make it is a little miracle to us.  really.


thank you for reading all these! here's hoping for a lovely holiday seasons!


Tuesday, July 10, 2018

CBD Oil Be Lit

CBD oil is kind of the craze right now.  For a white I was skeptical, mostly because I saw SO many network marketing companies selling these products on instagram.  And of course I researched like heck and read so many places that these items were often diluted or didnt have cbd oil in them at all.

I stayed away.

And then a while ago I was introduced to Joel and Theramu.  He sent me some cbd products at kind of the best time to try them - I was have a MS hug flare that just was sticking around for weeks.  I was desperate so figured what the hell.

Damn it - they provided relief.


Sunday, November 16, 2014

Why Being Sick is So Hard

Since I was diagnosed with MS two and a half years ago, I've managed to stay positive, to stay triumphant over the diagnosis.  In and out of wheelchairs, hospitals, clinics, procedures...I managed to remain with a smile on my face (don't worry, there were tears too - I'm not that superhuman).

But lately I have been struggling, getting to the point of "I can't even" with this sickness.  People look at my progress and they praise the journey, assuming I've been healed, fixed, I'm better.  When the reality is I just look really great...I feel like shit.

Why is being sick so hard?

There are the physical signs - your body is in pain, you are struggling.  But there is something deeper that is felt, and I tasked myself to help find an answer. 

And by tasked I mean I turned to google.  

Usually I try my best not to google health related things as the answer always is some degree of death (thanks webmd).  But I needed some type of explanation as to why life is increasingly becoming more challenging as each day goes by. 

It was here I re-discovered Maslow's Hierarchy of Needs.  I had studied Maslow and his need pyramid during my MBA to learn the how to's and the what's behind motivating people.

If the hierarchy of needs could be applied to the work place, why not to health life?  Could this be the answer? 

First, let's discuss the hierarchy of needs.  Maslow's theory states that every person has "needs"; these needs, when not met, will cause deficiencies in a person.  When needs are met, it enables a person to grow, to achieve fullness, to achieve happiness.  



There are five layers of needs, starting with the most fundamental at the bottom: physiological, safety, love/belonging, esteem, self-actualization.  

Physiological needs are based on the basic requirements for survival : food, water, air, Starbucks.

Safety needs include security in the areas of personal and financial, health, and a fall-back plan when disaster strikes: i.e. illness, divorce, name being called during Hunger Games.

Love and belonging needs allow a person to maintain emotionally, significant relationships with friends, family, puppies.  Having a sense of belonging to a group in some way. 

Esteem needs include gaining respect from others and within.  Being encouraged by those around you as well as when you look in the mirror - even if your hair isn't that cute that day.

And at the top, self-actualization, is recognizing one's full potential and achieving it.  "What a man can be, he must be" - Maslow defined.

So how do these levels of needs play into answering of the question "Why Being Sick is So Hard"?

One word: deficiencies.  

If a prior need is not met, it disables a person to be able to grow to that next tier need, Maslow teaches.   At the end of the day, these deficiencies make it oh so challenging to become the best one can be, to achieve that top need - self-actualization.   

True happiness is achieved when a person is able to reach the top, reach self-actualization.  But in order to reach that need, one must not only achieve the previous needs, but master them in the daily life.  

When diagnosed with a disease or a sickness, it hits the second tier, safety, hard.  It rocks it, and not in a good way.  Health is one of the most fundamental needs of a human person.  With that need distinguished, it creates a deficiency.  It disables a person in being able to reach the other needs of life. 

When one becomes sick, the needs of love, esteem, self-actualization, become back burners, because you're stuck in level two - safety.  Yet you crave these needs, you want them more than before because of the deficiency.  

It's a vicious cycle - you can't climb up because you don't have the right equipment, yet you spend all your days thinking of only the climb.  

When trouble hits in life, especially in the safety area, there is a usually a social response.  For example, when someone experiences a loss, you send flowers.  When someone goes through a break-up, you bring out the Chardonnay.  When someone experiences money difficulties, people pass around the basket.  

Yet, when one's health goes away, while there may be support of some kind in the beginning, it usually is diminished as time goes by.  And this is understandable - if you do not have health deficiencies, if you do not lack in the safety need area, you are focused on the higher needs - the end goal of self-actualization.  When someone around you becomes sick, you do not realize the burden of losing that need, for it is second-nature to have it.  

Maslow teaches that the area of safety is most important to children - for that is when you are most dependent.  But as we grow into adult lives, those needs of personal, financial, and health safety are so intertwined into our lives that a loss of it becomes unimaginable.  

Yet, for some, we wake up one day and can no longer walk.  And that intertwined safety need gets stripped away.  And the rest of the pyramid wobbles, crashes, burns.  We are left with pieces to rebuild, yet we are rebuilding on a rocky surface.  

And this is why being sick is so hard.  

Now, I really like Maslow - I really like his theories.  But they lack in some ways.  For he teaches that without the needs of the bottom, you cannot achieve the top.  I know this not to be true.  

For there is an additional theory - The Sparkled Theory. 

The Sparkled theory, in summary, states: that with hope, additional needs can be established despite a deficiency.  

The Sparkled theory believes that even when health is taken away, and a person should hence be stuck in the "safety need" tier, it does not mean that they can not master the other needs.  

Its just a lot harder. 

At the end of the day, no matter how positive or negative it was, if you are sick and lacking in the safety need department, it's a struggle.  No matter what diets you choose, or medicines you take, or therapies you try, there is still a deficiency that makes achieving the addition hierarchies of need ever so challenging.  

This is why if you know someone who struggles with being sick, with a loss of the safety of health, have compassion.  Take the time to help them build their pyramid again.  Health will always be deficient - but that does not mean that every other need must suffer as well.  

The Sparkled Theory provides evidence that with that hope, one can rebuild.  One can restore.  One can achieve self-actualization.  

If you adapt your hierarchy of needs with that of hope, you can reach happiness.  Despite any deficiency.  Hope is the secret, hope is the key.

Love, Eliz


PS: Thanks google!



Monday, July 14, 2014

Diplopia - A Funny Word for Pirate Life



I dont even know how to tell the story of my life the past week because it seriously seems made up, it's that crazy.

Crazy, dramatic, unnecessary, and all other words that would fit in those catagories.  

The hospitals, clinics, drs, research facilities, MS society...they all express the necessary life function of keeping your stress levels at an all time low.

At first, this was one of the hardest things to achieve as I had a stressful life.

But now I can say with no hesitation that my life, even with this crazy disease, is (mostly) stress-free.

The stress that I do find comes from: hospitals, clinics, drs. research facilities.  Do we see the irony there?

I'll summarize:

After numerous attempts to contact my MS specialists office (a MS nurse, a PA, someone!!), I received a phone call from the answering service saying that the office would like me to go the ER. 

I had been told the evening prior that I should go to the ER from a resident.  But was hoping my speicalist would provide better news because I am not a lover of hospitals. 

But now it looked like that was the option.  So we went. 

The morning of as I was getting ready I was mentally preparing myself for the ER craze.  ER's have been a chapter of the most awfulness in my past and I was concerned about that day's adventure.  I was hoping for a quick, concise, ER trip. 

And then I stop, saying to myself "hell, Eliz, the chances of that happening are slim to none.  Let's be real."

Then I "hear" the voice of God say "if you dont believe in miracles, they arent going to happen."  To which I replied "JK totally believe!! Please let it come true!!"



And you know?  It did!  The had me in a room and hooked up even before my mom parked the car.  They were nice and compassionate and even entertaining (who knew!).  They even got a vein in one stick (this NEVER happens). 

I went for a brain and optic nerve MRI (if you've never had a ON MRI, it's pretty intense.  The pounding of the MRI is right there on top of your eyes and you have to keep them shut the whole time). 

Results came back and the ER dr and the radiologist confirmed some bad news: three new lesions, one of each optic nerve (left and right) and one in the cerebellum.  They were sending down neurology and I should prepare myself for being admitted for a few days.

Neurology came down, confirmed the MRI, did the exam.  We talked about options, how steroids were out since I dont respond (this is now very purposely written on my file at UPMC.  Thank goodness.  Dr's have an easier time reading files than believing patients.  Go figure).  We discussed potentially doing plasmapheresis again even though I just went through 5 rounds a few weeks prior.  It was very calming and we even discussed some of my other questions that I have (like the whole parkinsons disease issue) and how this could be addressed during my time. 

Neurology left and though I was disappointed about staying in the hospital, I felt like I was being listened to, that I was being heard, that I was being a part of the deciding situation. 


(Of course I stuck to my hospital uniform: t-shirt, leggins and toms.  Hospital gowns are not for the experienced).

And then it all changed. 

ER resident came in and said my Specialist wanted me sent home, with no treatment, and he would see me tomorrow morning.  

Im sorry?  We were all on the same page that this was serious, that action needed to occur.  But now the great MS Specialist (who doesnt even practice in the hospital) says to order me home and no one has authority to tell him no?  

"Uh yeah."

Can I get a second opinion?  blah blah blah

"Um no.  Not in this hospital."

#awesome

I'll spare my thoughts on the negligence of this situation. 

I went home and while I was happy to be in my own bed and not the hospitals, I was also concerned.  This was serious.  And I felt like I was being pushed into a closet.

The next morning I met with my MS specialist.  I left the office with no answers, no apologies (lots of excuses/explanations), and no plan of immediate action.  

My best option is to retrain my brain / eyes how to see.  I've retaught my legs, arms, speech, etc.  I can do this.  It just means the pirate patch might be around for a bit.  

And there is still the overall concern with how/why this is happening and so quickly.  But I cant think about it because there are no actions to take at this time.

However, if I may hint, I do have a big appointment in August with a dr who looks promising.  I have my doubts only because of the past two years history.  

But like what happened explained above, if you dont believe in those miracles, they wont happen.  



So I'm believing.  Im hoping.  Im praying. 

Oh and Im also relearning how to see.  Have I mentioned my body is kind of bad ass?

Keep up the love and sparklers!

Love, Eliz
 

Thursday, August 22, 2013

Sparkle On

Guest Blogger...Captain Team Sparkle...aka my Mom.  Love.





I've learned over the past few months that one of the hardest things about MS is its unpredictability.  Even when a MS sufferer is in remission they can have a good day followed by a day where they truly cannot get out of bed. (As one MS sufferer calls it, a pajama day! More about that later.) It is hard for people who aren't intimately involved with someone with MS to understand this. A person with MS can't plan vacations, dates, or appointments with any confidence that they will happen.  They don't know from day to day when a "pajama day" will happen.  

Unfortunately, friends and acquaintances don't always understand the unpredictability of MS and take offense when lunch dates are cancelled, phone calls aren't answered, emails aren't returned.  They feel inconvenienced when plans suddenly change.  What they don’t see is what the MS sufferer is experiencing which might include extreme fatigue, tremors, spasticity, dizziness, cognitive dysfunction, headaches, and a multitude of other symptoms.  They might be lying in bed with the curtains drawn, using all the energy they have just to get something to eat or go to the bathroom.   Talk about inconvenience!

Elizabeth recently had long time friends who wouldn’t talk to her for weeks because she had to cancel an appointment. The day that Elizabeth cancelled the appointment she spent the entire day in bed because of an excruciating headache.   It was not a good day.  In fact it was a very bad day.  Imagine the stress that Elizabeth had to deal with as she repeatedly apologized and was never really “forgiven”.

Imagine a world in which you worry about every birthday, anniversary, wedding, baptism, appointment, or vacation.  Will you be able to attend?  Will you have a relapse?  Will you simply have a “pajama day”?  And you have to worry about other people’s reactions.  How often has a MS sufferer heard, “But you were fine yesterday!”  Or, “How can you be too tired to meet with me?”

Why am I the guest writer today?  Because Elizabeth is having an extreme “pajama day”.  She was able to walk all the way down the aisle at her sister’s wedding.  She was able to give the Maid of Honor toast.  She was able to attend the day after “wedding brunch”.  She was able to go to a doctor’s appointment by herself.  She was able to go to Starbucks and address many MS Bike postcards.  And then it hit.  An extreme pajama day.  Actually, several extreme pajama days.  And we are praying that it isn’t weeks and months of pajama days.  But, once again, that is the trouble with MS: its unpredictability. 

BTW, why pajama day?  I don’t know where I first read it, but one MS sparkler posted that she does not call any day a bad day.  Every day is a gift and she will not label any of the days as a bad day.  And so she coined the term pajama day.  This leads to one more thing that I have learned about MS.  MS sparklers are truly inspirational and show the rest of us how to live. 

Sparkle on, Elizabeth.