13 September 2012

Invisible Illness ~ Kayla's Story ~ Living with Lyme Disease

This week is
National Invisible Illness Awareness Week.

Four woman, including myself,
will be sharing their stories
about living with 
Chronic/Invisible Illness
here at From My Front Porch in the Mountains!

Each post will also be linked onto the 
Invisible Illness Awareness ,
Invisible Illness Awareness Facebook page, and their Twitter feed!

It would mean the world to me if you could join in and support
us by letting your followers know what is happening
on the front porch this week :))

It isn't always easy to put yourself "out there"
and speak of personal health issues.
In fact, it can down-right scary.

The 3 women who are writing this week,
are taking a leap of faith.
Faith that you will really listen to their stories.
Faith that you won't judge.
{ Because people do!}
And faith that in telling what their lives are like,
it will help other people not affected by chronic illness
to have a better understanding of 
what our day-to-day lives are really like.

Originally, there were 2 others who
 were to participate this week.
Each made a decision at the last minute
to not share their story.
I was disappointed, but I totally understand why.
I also have great respect for each person.

Maybe next year they will feel more comfortable in doing so.
I hope by reading the stories shared here, they will know
they are not alone.
Neither person has ever shared on their own
personal blogs about the chronic illness they live with.

By being here and reading our stories, you can help
show your support by leaving comments
wrapped in love, support, and respect!

~ ~ ~
Who will be sharing their story?

Bianca van der Wiel is Dutch,
living in the Netherlands.
There is quite a contrast
in the health care system
between the U.S.
 and her country.
And the way people perceive Chronic Illness
in her part of the world.
Bianca will be sharing her story tomorrow.

Betsy Allison Tant 
lives in east Tennessee with her
husband and three children.
She is the executive director of 
Henry's Fund.
Her nightmare of chronic/invisible illness
began 5 months ago.
Betsy will be sharing her story this coming Friday.

 I will be sharing an update, and
my guy, J, has written a 
short piece that I will include in my post.
My living with Chronic/Invisible Illness 
is as frustrating for him, 
as it is for me!
My post will be here on Saturday.

~ ~ ~

Today we begin with Kayla.
A twenty-something whose life
changed at a very young age!
I actually "met" Kayla through
a giveaway I won!
A beautiful piece of jewelry that she designed
and I wear with love. 
And a friendship was formed!
I admire her so very much.

~ Kayla's Story ~

{14 years old a couple months after I
initially got sick

It was brought to my attention recently that September 10th through the 16th is Invisible Illness Awareness Week (thanks Misha)!

Being sick with Chronic Lyme Disease for the last 8+ years (my 9 year anniversary is in the middle of January), I know quite well about 'Invisible Illnesses' and what they do to those who suffer from them, as well as their family and friends.

Since the beginning so many years ago, my mom and I have been both treated like we're crazy by so many people; family, friends, doctors, and strangers on the street alike. Since Lyme Disease is one of the more shunned and unspoken of illnesses, not many people believe it's validity, which is due to equal parts misinformation, denial, faulty testing and, in my personal opinion, cover up.

I've been told by numerous doctors out of the 100s I've seen in the past that it's in my head, I'm doing this for attention, I'm faking it, I'm a well rounded individual; you name it, I've heard it.

I've seen diagnoses such as Chronic Fatigue Syndrome, Fibromyalgia, POTS (Postural Orthostatic Tachycardia Syndrome), Arthritis and Rhemetoid Arthritis, Depression, Narcolepsy, and those are the diagnosis you CAN'T see. There has also been Gilliane Barre and RSD (Reflex Sympathetic Dystrophy). I've also been tested for Multiple Sclerosis, Lupus, and many other illnesses.

It took me 5 years and a whole heck of a lot of fighting to get a concrete, clinical diagnosis of Lyme Disease and still, after all these years, many people unfortunately don't take it seriously.

On top of it all, I'm extremely sensitive to traditional Western medications which I thankfully found out early on, so my mom and I had to go almost completely natural and holistic in our treatments, which of course isn't covered by our insurance. 

{my amazing mother and I at my high school graduation}
I've had to forget about working a 'real life' job and am currently looking into filing for SSD (Social Security Disability). High school was a complete nightmare and I gave college my best try, but I found very little (affordable) online courses and the teachers at the local community college really weren't interested in taking time out of their schedule to work with me. I've lost several friends because of my illness. I've lost out on many opportunities to be a  'normal' teenager and young adult because I never know what's going to happen to my health on a day to day, week to week and month to month basis.

To sum it all up, the past 8+ years have been one, big uphill battle that's not getting any easier, even 8 years later.

All of this, and I can honestly say I wouldn't do anything different, even if given the chance.

Am I crazy you might ask?

Yes, it has been the hardest thing living with an 'invisible illness,' but I'm a firm believer everything happens for a reason and I know this has made me the person I am today and given me so many things I wouldn't have had if not for this path I was given.

If not for this, I wouldn't have found my passion for naturopathic and holistic health, healthy living or even creating jewelry. I wouldn't have created my jewelry businesses, started my blog or met half the wonderful, amazing and inspiring people I've met over the years.

I also have support through it all. My mother has been my biggest advocate from day 1 and continues to fight every single day for myself and my health. She's given up opportunities and spent countless hours researching and taking care of me, not to mention taking me to different doctors and appointments and putting us in debt to find 'the thing' that will finally work. In her words, "I will leave no stone unturned!"

Plus, I wouldn't have met and fell madly in love with my boyfriend, best friend, and soulmate, who, like my mom, has become one of my biggest advocates and support systems.

{the love of my eternity}

Illnesses like Lyme Disease and the other "invisible illnesses" of the world need to be addressed, not only by knowledgeable doctors that will actually listen to their patients and work to gain their health back, but also from people who just don't understand that what you see sometimes ISN'T what you get.

You need to treat people with respect regardless of what they look like on the outside because if you don't personally know them, you certainly don't know what's going on in their lives.

Great rule of thumb: Treat people the way you wish to be treated! Old school, but still relevant to this day. 

Thank you Misha for having me today and spreading the awareness of this important issue! It was an honor to write this for you and National Invisible Illness Awareness Week.

Love, Kayla
The Eclectic Element
Connect with Kayla on Facebook
And take a look at her gorgeous hand-made jewelry on Pinterest
Please take a moment to read and understand Lyme Disease

Thank you for being here today!
I really hope you will take the time to leave a comment
and let Kayla know how her story
has resonated with you.


{My apologies for posting this so late.
Between dealing with a few health issues today and
a computer that did not want cooperate,
I am about 7 hours late with this!
That's life!}


TexWisGirl said...

such beautiful women, all courageously fighting forward. :)

thank you for sharing your story, kayla. my husband has worked with a woman with lyme's disease. she struggles as she's often had to call in sick, has weakness in her body people don't seem to understand, and i'm certain has been ridiculed behind her back. i appreciate your advice to treat others as you'd like to be treated. God bless your mother. :)

Diane Cayton-Hakey said...

It must have been complete relief just to finally have the correct diagnosis. What complete frustration this must have caused you on a daily basis. Glad to know that you seem to be doing a little better right now?? Are you?? Don't worry about doing this post late.. Misha understands and so do the rest of us. :-)) Take care, sweetie.

Pattie @ On Hollyhock Farm said...

Thank you for your story Kayla. I did not know Lyme's disease lasted that long?!
Sometimes dealing with doctors is just as bad as dealing with the illness! We have to be our own advocates and study and research and ask millions of questions and still not get an answer! I had to TELL my doctor I had Eppstein Barr Syndrome and then Fibromyalgia!!!! We are here for all of you! You are stronger for dealing with your illness.

Melinda said...

Thank you for sharing your story.
Our custodian at our school has this disease and I know it is nothing to mess with!
Keep up the good fight and shairing your story with others.

Thanks to you too Misha!

M :)

Bianca said...

Hi Kayla, being the next to share our stories here, I can understand a little bit of what you're going through. A little bit, because every person lives and deals different with an illness, don't they? Nice to hear you have your mother who knows what you'll have to deal with. My mother and mother in law just got it a week ago I think, when I posted my story on my blog. My MIL even sent me an email with apologies that she never thought it was so bad and never really thought about it at all! So, what ever will become of this week - in the US or Europe - for me that was worth the whole thing now!!!
Hang in there suger and keep making your beautiful stuff.
Hug, Bianca

Rural Revival said...

Thank you for sharing your story Kayla. I've read about the seriousness of Lyme Disease, yet it's another one of those illnesses that seems to stay hidden in the shadows. Thanks for bringing it out into the light.

I'm off to visit your jewellery designs and to brush up on my knowledge of Lyme disease.

Hugs to you

PS. You and your sweetheart are such a cute couple!!

PPS. Give your mom a hug for me, she's truly a very special lady. : )

Mamabug said...

Thank you Kayla for sharing your story. I'm so glad you are a fighter! God Bless you!

Lynne said...

Thank you Kayla, for sharing your story and journey. Although I have heard about Lyme disease, my knowledge is nothing compared to having you share your story, making it personal and giving a face to the reality you endure.

Sometimes in life we meet GOLDEN people. Your mom is one for her tenacity, Misha, another, for her encouragement, your "sweet" for his faithfulness and love, and you because you have brought something from the invisible to the visable.

Again, thank you . . .
may your best days be more, and more and more.

Donna said...

So glad you shared your story about living with Lyme Disease. Bless you and your mother for having to deal with this illness. I have read how devastating it can be.
It is so sad that it took so many years to be diagnosed correctly.
Thank you Misha for allowing Kayla to share her story.

Olive Cooper said...

Hi Kayla, thank you for sharing your story. I am familiar with Lyme disease as I am an RN who used to work with an M.D. who treated patients with the disease. I hope you are doing well. Sounds like you have terrific family support. I too have an invisible disease, rheumatoid arthritis. Hugs to you, Olive

Karen said...

Kayla, I live just across the river from Lyme, CT where it is believed the disease or atleast major outbreaks originated in, I believe, deer ticks. So the disease and those aflicted are many here in this neck of the woods. It is not shunned or made light of around here and Doctors are becoming much more aware of it's many symptoms and possible treatments. I'm sorry that you live in a part of the country that perhaps doesn't have good knowledge or support for the disease.

Linda said...

Our daughter has had Lyme's disease for several years now - she was a vet assistant - so I understand your difficulties and applaud you for the decision to use this public forum to further awareness. God bless you as you continue to live your life moving forward, not staying stuck in the past.

Oz Girl said...

Kayla, I'm happy to see you enlightening even more people beyond your own blog about Lyme disease, but I'm still not happy that you have it. >:-{

Misha, such a wonderful idea to showcase 4 different stories from 4 unique, strong women during Invisible Illness week.

My sister has rheumatoid arthritis but rarely talks about it. I know this runs in families, and I wonder about some recent issues I've been having.... but haven't checked anything out medically, yet.

At any rate, I know that Kayla is well versed in natural foods, and I'm sure you are too Misha, but another website that everyone may find interesting is Nourished Kitchen: Reviving Traditional Foods (nourishedkitchen.com). Today's post is particularly interesting: a story of recovery, and a recipe for simple pear sauce. There is also a link in the article to a book, "Breaking the Vicious Cycle", which after reading about it on Amazon and the reader reviews, I might be getting it myself.

I enjoyed your post today Misha and will be waiting to read everyone's story. It's a good reminder for me to be ever so thankful for my health and fitness.

Crocheted Little Things said...

Hi there, coming over from Kayla blog! I know her story by heart right now and she's so strong and inspiring to me. My son is autistic so I totally get the issue of the "invisible illness". People forget to look with their heart and only register what they can see with their eyes.

Kayla @ TheEclecticElement said...

TexWisGirl--Thank you for your kind words! It really is rough when people don't understand, especially when one day you seem to be fine and the next you're not.

Diane--Thank you for your comment :) It was definitely a relief, but unfortunately even though we have the diagnosis, people still don't take it seriously.

As for how I'm doing, it's still up and down; This year has been a rough one for me, but I just take it one day at a time!

Pattie--That's what I tell everyone I come across, not only who has an illness, but who are dealing with tough situations. You are ALWAYS better because of them :)

I know people that have had Lyme for 20, 30, and 40+ years, so once it hits the chronic stage, it's nearly impossible to get rid of it.

But I do wholeheartedly agree-We have to be our OWN advocates!

Melinda--That it definitely is not! Thanks for your comment :)

Bianca--Everyone tells me that I have it so much harder then they do, to which I respond I don't believe in having it 'worse.' We are all dealing with tough things and that makes myself and what I'm going through neither better nor worse than anyone else!

I'm sorry to hear about your family, but at the same time it's almost vindication to you that they finally somewhat understand.

Everything happens for a reason!

Andrea--It's definitely one of those diseases that has a lot of controversy behind it. Not only do I deal with being sick, I deal with the politics behind it >.<

P.s Thank you for your kind words :)

P.s.s I WILL! She IS a very special lady; I'd have been gone a LONG time ago without her help, guidance and support.

Mamabug--Thank you so much! :)

Lynne--It's always so much more powerful when you put a name, face and story to an illness, which is why these awareness campaigns are so important!

I've met so many of those 'GOLDEN' people you mentioned and I keep meeting them every single day :)

Thank YOU for your sweet comment!

Donna--Thank you so much for your encouragement and comment on my story! :)

Olive--I've been diagnosed with rheumatoid arthritis, but it all correlates with the Lyme; it's definitely tough, so I'm sorry to hear you have to go through that.

Like Pattie mentioned, we are better and stronger for dealing with these illnesses!

Karen--I know many, MANY people up near your neck of the woods with chronic Lyme; the northeast is definitely one of the most affected places!

Some people, however, don't realize that it's located in ALL 50 states as well as Canada, Mexico, Europe and many other countries.

I'm so happy to hear even though many are afflicted, that Doctors are coming to their senses and actually TREATING people.

Linda--Thank you for your kind words and your sweet comment. I'm sorry to hear that your daughter has this too.

It's one rough disease and it's different for each person that has it!

I hope you and your daughter, as well as your family are doing well :)

Susan-Thank you for sharing about that website! My mom and I are pretty good with natural and organic foods, but I'm always willing to learn new things ^.^

And of course thank you for your lovely comment!

Lu-You know I <3 you and Gabriel! :) You guys are always in my thoughts and this week is for you and him as well!