How It All Began, Pt 4

lyme disease awareness ribbon

  My last post ended two years ago, when I became bedridden again.

  It was absolutely devastating to find myself once again unable to get out of bed because of I was so ill.  Never in a million years did I want to reach that place again, yet there I was.  The IV antibiotics had cost me my life savings and more, so not only was I income-deprived, I was broke.  Independence had been taken from me even though I had made it my life’s goal to get out of bed in my teens and do something with my life.

  Lyme disease is harder than most can ever imagine.  As one person put it, “if you don’t have Lyme, you don’t get Lyme.” Because my liver was so overwhelmed by the medications I had been pouring into my body, I began to put on weight, even though I was eating next to nothing.  The search for a new LLMD began.

  Again, my amazing mother found an incredible doctor and I began to see him shortly after becoming bedridden.  It took unparalleled effort to drag myself to his office and the testing he did was intense.  However, he identified key problems with my body (including reduced liver function, a high amount of Candida thanks to the years of antibiotics and a severely disabled gut).  We began to work on these issues while also addressing the Lyme bugs and co-infections that were still wreaking havoc with my system.

  This LLMD put me on a Paleo diet along with many natural supplements including herbals.  Amazingly enough, after a few months, I began to feel better.  There was still no possibility of me getting off the couch but the joint and muscle pain was reduced and the fatigue was not quite as overwhelming as before.

  A few months later, things were still looking up.  Although many of the treatments and supplements I was taking were things I had tried before, they had never been combined in this particular way; each had a specific purpose for treating one of the items on my list of grievances. Together, with the Paleo diet, my body began to heal.

  It has been a year and a half since I began with this latest LLMD.  My current health status is nearly the opposite of what it was two years ago.  Not only has my health improved but I am continuing to test and identify problem areas, afterwards adjusting my protocol as needed. If life continues on this way, I will be ready to join the workforce again and perhaps get back into school.

  It has been over 16 years since I first became sick.  The Lyme is still not officially in remission and it is probable that I will spend the rest of my life fighting this disease.  However, it has made me the person I am today and for that, I am grateful – I’ve been through rough times and so far, my success with survival is 100%.  That fact is encouraging on difficult days.

Thank you for reading my story.

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How It All Began, Pt 3

lyme disease awareness ribbon

  In my last post I ended my story at age 18, after my trip to Puerto Rico.

  My eighteenth year was quite momentous for me. Although I still did not know what was causing me to be so ill, I had a dream and no one was going to stop me from going after that dream.  I wanted to go to college.

  During that year I finished the last two years of high school in five months and got my GED.  Soon after receiving my GED I became a licensed driver, and my search for jobs began.  My pain had not subsided but I was determined not to let life pass me by any longer.  After three failed suicide attempts, I realized that death was not going to release me from my illness and neither were doctors so somehow, I had to release myself.

  Thus began the years of “faking it.” Oh boy, was I good.

  When I was nineteen I entered the work force and hid my illness from everyone.  I disliked even discussing it with family.  The only way I could survive each day was by pretending that this illness did not exist and by pushing away the immense fatigue that followed me everywhere.  Friends had no idea that I was battling world war three inside because I did not show weakness and made sure my dress and makeup revealed someone “ordinary,” someone I desperately wanted to be.

  Eight years of faking it.  I was able to make it eight years.  Few people outside of my family knew the real me and even when I did disclose something, it was only a miniscule amount of the real story.  To show weakness meant that I felt weakness, which was something I could not feel if I wanted to survive.  In the workforce, I excelled quickly and was put in positions of management.  During the evenings, weekends and summers, I took college classes and received high grades.  My dates/boyfriends saw the woman I chose to show them: an energetic blonde with a beautiful tan and gorgeous smile who was determined to make something of herself. 

  My over-taxed and under-appreciated immune system, along with my weakened liver, would not allow me to lose weight.  I felt that in order to be successful and appear healthy it was essential that I be thin and so, in desperation, I developed an eating disorder. After six months I had lost nearly 50 pounds but had also become addicted.  Due to the disease ravaging my body along with the complications that come from an eating disorder I visited the ER on multiple occasions. 

  It was during these years that I had finally gotten two diagnoses from a doctor: Fibromyalgia and Chronic Fatigue Syndrome.  Due to the fatigue, joint and muscle pain and weakened system these evaluations made sense but also helped lead my mother to the idea that Lyme disease could be the culprit behind this mystery.

  Lyme disease – a dirty disease that no doctor wanted to discuss or deal with, so my mother (always my advocate) begged a prominent LLMD in the area to see me even though she had not taken new patients for a while.  It was with her that I finally tested positive for Lyme disease (after several negative test results in the years previous, an all-too common occurrence).    Although I was now seeing a qualified and dedicated LLMD, I was resistant to truly taking care of myself.  “Lyme Disease” was a sullied diagnosis and ostracized by even the medical community.  Many people regarded my diagnosis as fake because, after all, “chronic Lyme disease does not exist” (Lyme disease that remains in your body after the initial treatment of a few weeks on antibiotics).  By this time the disease had ravaged my body for ten years and my condition was most certainly chronic, but I was determined not to let it define my life. 

  My LLMD started me on multiple antibiotics and for several years I pulsed these medications while supplementing my routine with needed vitamins, minerals and a gluten-free diet.  Other therapies were attempted, such as natural IV treatments, saunas, particular herbals and homeopathics (to name a few).  My body was maintaining the lifestyle I desired but still at a high cost.  It took the end of a long-term relationship to motivate me to truly recover from my eating disorder and seek healing friendships and counseling for the mental toll this disease was taking on my life. 

  After over five years of pulsing oral antibiotics I felt that something more drastic was needed in order for my body to truly fight the Lyme disease and cause it to go into remission.  I sought out another prominent LLMD and began IV antibiotics.  Unfortunately, my immune system was so taxed at this point that the IV antibiotics did more harm than good and after five months on them, I was forced to stop not only the medications but also leave my job. The worst had happened yet again; I was bedridden from my illness.

To Be Continued… (tomorrow’s post will be the last of my story)

Til It Happens To You, by Lady Gaga

Last year, Lady GaGa released a powerful song entitled, “Til It Happens To You.”

 

This song was not written for those with chronic illness; however, if you pay attention to the lyrics, you may find that it still resonates deeply with those who have lived in a world full of healthy people while suffering from intense and chronic pain.  The words paint a picture for anyone who has dealt with loss.

 

“Til It Happens To You” received several awards and was nominated for an Academy Award in the category of Best Original Song in the 2016 ceremony. I have included a video of Lady GaGa’s performance below.  Once you watch it and truly listen to the lyrics, I believe you will understand why this song has touched so many people, including myself.

What Do You Expect From Me?

What Do You Expect From Me Pic Feb 2016

 When dealing with chronic illness, a  person, understandably, thinks quite selfishly.  Their thoughts revolve around how to survive each new or recurring symptom of their disease with maturity and patience.  Others may consider those who are chronically ill as self-centered and, to a degree, we are.  This is because of necessity, not because of a character default on our part.

 

 Therefore, when healthy people interact with the chronically ill without previous understanding of their condition (most likely because they have never been through anything similar themselves), they place expectations on the performances and response of those ill individuals.  A sick person lives in their own world full of pain, while healthy people tend to focus much more on the world around them, such as their jobs, relationships and social standing.

 

 To be frank, dealing with others’ expectation of those of us who are ill can be just as hard as dealing with the disease.  At one time in my life, I adhered to others expectations of me and made it my goal in life never to disappoint those close to me.  Because of that demand I placed on myself, I lived a very unrealistic life where I worked full time, attended school, volunteered, kept the house sparkling clean (even the trash cans were cleaned weekly), kept up a busy social life and maintained a long-distance relationship (which brings its own unique difficulties).  The end result was, of course, a breakdown from my body.  Unfortunately, it took multiple breakdowns, physically and emotionally, until I learned my lesson.

 

 As chronically ill individuals, we will never be free of expectations from others. NEVER.  Most likely, they will always expect more from us than we can ever give because, if they are healthy, they get those results from the other healthy people surrounding them. It is not our job to make other people happy, nor is it our job to fulfill their desires for us.  The only way to maintain a healthy relationship, both with our own body and with others, is to live according to the restrictions set upon us by our disease.

 

 Sound harsh? It is.  But once we accept our own limitations and have confidence that we can still live a wonderful life in accordance to those limits (and we can!), we actually give others the freedom to accept us exactly as we are and to back off on the pressure they place on their own lives.
 I am not giving you the freedom to be lazy; however, as I have learned, there is still much you can accomplish from the couch.  You may appear lazy to others, but trust yourself and your body to tell you when you can get up and do something, and when you can’t.  Your gut instinct will not lead you wrong. Don’t pay attention when others get angry with you for not accepting that dinner invitation or pursuing that high-powered career; do what is best for you and you will be much happier and in turn, make those around you happier.

Merry Christmas 2015

  Merry Christmas 2015 to all my friends, family, and any others who have taken a few minutes out of their busy holiday schedules to read this!

  Amazing how quickly a year passes.  As I sat with my counselor the other day, we marveled at how 365 days could come and go.  Those days have been filled with struggles and triumphs, disappointment and joy, tears and laughter.  As we come to the end of this year, I would like to reflect on what 2015 meant to me and what I wish from this holiday season.

  At the end of 2014, I was at an extremely low point in my life.  My health had deteriorated to such a degree that simply surviving was all I was managing.  However, in October of 2014 I had been to see a new doctor and by Christmas I was on a new treatment program.  It certainly wasn’t providing instant gratification, but after fifteen years of being chronically ill, no sudden miracles or cures existed and I knew I was in it for the long-haul. 

  In February of 2015, my sister and I enjoyed a small vacation.  Although I was wracked by four migraines within the five days we were away, it was still an enjoyable time and a chance to see four different walls for a short period of time.  By July of 2015, my health had taken a clear turn for the better.  After sticking to the strict new protocol set up by my new doctor for 8-9 months, my joint and muscle pain had greatly deteriorated, my energy levels were improved, my cognitive function was better and my emotional state was better than it had been for quite a while.  Although I still struggled with constant headaches, sleep issues, pain and brain function, I was greatly encouraged.

  Of course, with Lyme disease, things can turn around quickly.  Because of the detoxification my body had experienced over the past months I began to experience new symptoms that drove me back to the couch and my mind, back to despair.  For these past few months of 2015, life hasn’t been a bed of roses.  As always, I am continuing to try new medications, supplements and treatment plans, and my doctors are alongside me in this battle. 

   My counselor recently asked me what I wanted from Christmas.  The question puzzled me; Christmas isn’t about getting, but about giving.  However, it made me think seriously about what kinds of gifts I would truly appreciate this holiday season.  The following are a few ideas that came to mind:

– Peace

  The constant belief that my times are in God’s hands and that no matter what happens, I am being cared for by One Who is greater than any doctor on earth.

– Confidence

  The knowledge that what I have been through has made me stronger, wiser and more prepared for the battles that lie ahead.

– Endurance

  The capability and patience to deal with all the new symptoms and health concerns that I know await me in the New Year.

– Selflessness

  The ability to put aside my own issues and reach out to others who are unable to articulate the hells they are enduring.

– Happiness

  Many consider love to be the ultimate secret to happiness; I however, believe that good health is happiness (and Buddha, coincidentally, agrees with me).

 

  There is one more thing I would appreciate this Christmas: knowing that everyone who is reading this post understands that, no matter what they are going through, someone else in the world understands about some of the harder aspects of life and appreciates and respects the fact that you are still here, still battling, still surviving.  You are constantly in my thoughts and prayers, and I pray that I can encourage you to keep on fighting through any struggles you face in the year to come. 

  Merry Christmas everyone, from Shelby and Bella (my faithful fur-baby)

Brain, Brain, Where Art Thou?

Yesterday I was at the hairdressers, ready to get my hair cut.  I went to a new hairdresser this time, so I was unfamiliar with their system.  Also, I only had a limited amount of sleep under my belt and though I thought I had enough brain power to see me through, my experience proved otherwise.

Walking up to the counter I was greeted by a woman.  “Are you getting a shampoo, cut, and blow dry?” she inquired, obviously having asked that same question a million times.

  “Haircut,” was all I could mumble after a brief moment of dead silence.  She watched me then nodded. Suddenly, my mind began to spin – wait, did she say shampoo, CUT, and blow dry? That was exactly what I wanted, and that was the only combination they were offering. Holy crab cakes.  I just made myself look like an idiot.

And I wasn’t done.

When the hairdresser began asking me questions about the type of cut I wanted after I showed her an example on my phone, my brain went blank again.  Didn’t I just show her the picture of what I wanted?  Shouldn’t she know how many layers to cut now?  Why is she asking me questions?

  “Um…yeah,” I responded blankly to her questions.  Wait, what did I just agree to? Then she began to shampoo my hair, and proceeded to ask more questions.  What questions, I have no idea.

“Mmmhmm,” was my response to whatever she was saying.  My brain went blank again.  Doesn’t she know customers can’t hear others with shampoo all up in their ears?

All I knew was I had showed her a picture of what I wanted my hair to look like.  I felt so tired sitting in that chair as she cut away, tense but also very tired.  My brain had shut off.  Turns out, she butchered my hair and I walked away a very sad customer.  But I couldn’t argue, or even tell her that she had cut it completely wrong.  By that time, the energy source to my brain was zapped and it was all I could do to drive home, where I fell onto the couch.

Oh brain, where are you when I need you?

Support Your Local Pharmacy

  In the past ten days, I have made multiple trips to the local pharmacy in order to pick up medications. This scenario is nothing new; I have so many medications that I am a frequent customer, both dropping off prescriptions and picking up more medications.  pharmacist1

  I don’t think the pharmacy would still exist without me as a customer. Not only do I have a ton of medications due to the complications of chronic Lyme, but many of the medications are very expensive.

  Many Lyme patients experience the same scenario: they have necessary hard-hitting medications, but are forced to pay unreasonable prices at their local pharmacy for these meds.

  Without Lyme patients, do you think half of the pharmacies would exist around us? I’m not sure if mine would! They get more of my money than is believable. However, I must have the meds, so what can I do?

prescription_pharmacy

  Support your local pharmacy.  Have Lyme disease.

“THE LOSSES OF LYME:” Self-Esteem

“Win”
by Brian McKnightgreen pics 5

 

Dark is the night
I can weather the storm
Never say die
I’ve been down this road before
I’ll never quit
I’ll never lay down, mm
See I promised myself that I’d never let me down

    I’ll never give up
Never give in
Never let a ray of doubt slip in
And if I fall
I’ll never fail
I’ll just get up and try again

Never lose hope
Never lose faith
There’s much too much at stake
Upon myself I must depend
I’m not looking for place or show
I’m gonna win

No stopping now
There’s still a ways to go, oh
Someway, somehow
Whatever it takes, I know
I’ll never quit, no no
I’ll never go down, mm, mm
I’ll make sure they remember my name
A hundred years from now

When it’s all said and done
My once in a lifetime will be back again
Now is the time
To take a stand
Here is my chance
That’s why I’ll…

I’m gonna win.
green pics 2
 
  Dear Lymies,
 
  The other day I was through. Through with life, through with the pain, through with fighting the same battles every day. Every morning I wake up exhausted and push myself to get up and go; every afternoon I survive the driving forces of pain in my body that beg me to lie down and stay down for a long, long, long time; every evening the feeling of numbness crowds my mind as I realize once again that, just like the days, months, and years previous, I will go to bed and wake up the next day, only to encounter the same battles with the same levels of pain and the same side effects of Lyme disease.
 
  “I will do whatever it takes to get better,” says a note card on my bathroom mirror.  I put it there to remind myself that I WILL fight, I WILL get up, I WILL win.
 
green pics 3
  Each day mocks me however, as the pain increases and the side effects of Lyme such as excruciating aches and pains in all my joints and muscles, a cluster of headaches that never go away, debilitating exhaustion, little-to-no energy, and the psychological urge to give up.  These are only a few symptoms. 
 

  When I decide to fight every day and every day it seems like I lose, my self-esteem seems to vanish as though to say, “whatever you are doing, it isn’t enough and whoever you are as a person, you aren’t enough to beat this.”

 
  I fight to maintain a positive attitude and, thanks to 14 years of fighting these battles, I am often able to catch these low self-esteem thoughts before they drag me down to the dark pits of discouragement. 
 
 
Everywhere in my apartment, I have notecards reminding me why I fight, why I fight every day, and why I must continue to fight even if it means battling for years and years.
  green pics 4
  Even if we fall, as we all do, we do not fail.  I had to share the song above as encouragement, and point out those special lines. 
Falling does not mean failing.

What Quote Best Describes You?

Below, I have given ten quotes or sayings

that describe those who are ill and in pain, and those who are suffering constantly. We are all in different stages of chronic disease, however; and so, keeping this in mind, I challenge you to pick ONE of the quotes below that best “hits home,” or best describes you at this time.
Feel free to then copy that quote onto your own blog. Sometimes, relying on the words of others keeps us from becoming overwhelmed when we attempt to describe the physical, emotional, and psychological pain we have to endure every day.
When you pick that ONE quote that best describes you at this time in your life, I would love to know as well. How can I continue to post my tidbits and scribbles, when I am unaware of the audience I am addressing? I want to HELP with this blog – so HELP me, if you can!
Go ahead, read the words of others now and hopefully, you will find a quote or saying that means something to you at this point in your life.

 

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