Tag Archives: ME

FIVE REASONS WHY I CHOOSE TO TELL MY STORY

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Since the beginning of my illness, I have always chosen to be very open about sharing my experiences with others. Somehow I felt that the burden to hold in “the truth,” was more painstaking than being honest about what was going on in my body. The full severity of my illness was probably only known to my family and close friends, but I was happy to share my story with anyone who asked. I believe, like the above quote states, that others can find meaning in my personal story. Below are the 5 reasons why I chose to and continue to choose to remain open about my health struggles:

 

1. Chronic Lyme Disease is called the “great imitator” for it’s ability to mimic other illnesses.

Patients are often misdiagnosed with conditions such as MS, Chronic Fatigue Syndrome, Fibromyalgia, ALS and Parkinson’s. Treatments aimed at these other diseases, generally do not yield much improvement for patients when the root cause is in fact, an underlying infection from the Borrelia bacteria or one of it’s pesky co-infections. I had been diagnosed with a list of ailments including Interstitial Cystitis, Pelvic Floor Dysfunction, Chronic Pelvic Pain, Adrenal Fatigue Syndrome, Hypothyroidism, Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity Syndrome –ALL of which can be symptoms of Lyme Disease. Many will remain undiagnosed unless enough awareness is raised for the idea that these other “illnesses” may instead be symptoms of Chronic Lyme Disease.

 

2. The profound fatigue, pain and neurological issues that often accompany Lyme sufferers is very isolating.

We are often forced to quit our job and stop participating in social or leisure activities. Many of us become housebound and bedridden for significant periods of our illness. I persevere in telling my Lyme story in the hopes that those buy soma 350 struggling the most will read it and feel encouraged that improvement can come no matter how desperate the circumstance may seem.

 

3. Lyme Disease is not well-known, well-researched or well-respected in the medical community.

By speaking and writing about Lyme Disease, I am able to contribute to the grassroots efforts of fellow Lyme sufferers to increase the understanding of this illness. The more information available to patients, the public and the medical community, the more people will notice that this is a real and disabling health crisis in our country today.

 

4. I have found strength in numbers.

Through attending support groups, uploading photos on Instagram, posting my status on Facebook and Twitter and blogging, I have been able to connect with so many wonderful people from around the world. Each of us are striving in our own way to have victory over our respective illnesses. As a result of sharing our stories, we have been able to encourage one another in the midst of the dark times and celebrate milestones during the better times.

 

5. I am passionate about being an advocate for myself and others with Lyme Disease.

Navigating the complexities of finding an accurate diagnosis and pursuing proper treatment can be very overwhelming for patients and their families. Despite my healthcare background, I too found obtaining a proper diagnosis and treatment plan challenging. Now that I feel I am on a better road to achieving wellness, I write openly about my treatments so that others may have some additional ideas and resources to discuss with their physicians.

I believe the more honest and real I am about my battle with Lyme Disease, the more people can be helped by my experience. Tell me, why have you chosen to or not chosen to tell your story?

#MyStory

MY FOUR MONTH TREATMENT UPDATE

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Instatus 29-03-2014 23:21

This week, I had my four month follow-up via phone consultation with my Lyme Literate Nurse Practitioner. I had spent much of 2012 and 2013 bedridden and unable to perform most of my activities of daily living. I required the assistance of my husband for most everything and I estimate I was functioning around 5% of my normal self for nearly a year and a half. I have written a few posts describing those dark days and grappling with the reality that Lyme Disease was slowing stealing my life. Somewhere between late October and mid November, I reached a point of desperation as the treatments I had been trying with my previous doctor had yielded no results. After reaching out to others in the Lyme community and hearing their experiences, I decided there was still enough hope and fight in me to once again look for a new practitioner to treat me.

Enter Nurse P.  I had known about Nurse P. for several years. Her story is much like mine where her initial symptoms presented as a bladder condition and then eventually progressed to the point where a series of tick borne infections were identified. I felt that since Nurse P. had experienced both my bladder condition and Lyme Disease herself, she would be the right person to develop a new plan of attack for me. I had my first phone consultation with her in mid October. She ordered a series of tests including vitamin D, CD 57, a urine culture, 23 and me genetics testing, Adrenal Stress Index and a blood stain from Fry Labs. By mid November, all of my test results had returned and the picture of what I had been dealing with for nearly a decade, finally became clearer. I was both happy to have some answers and overwhelmed by the long road that now was in front of me.

Nurse P. confirmed an abysmal vitamin D level and a very low CD 57 indicative of the Lyme bacteria, Borrelia burgdorferi, and an immune system that was slowly being drained. The blood stain from Fry labs showed evidence of the Lyme co-infections, Bartonella and Protomyxzoa. Finally, the 23 and me genetics results revealed MTHFR and COMT mutations reducing my body’s ability to perform methylation making me feel even more fatigued and impairing my liver’s detox capabilities. Armed with this new arsenal of information, we were ready to put my treatment and detox plans into action.

Areas of Improvement:

1) I have been treating with a combination of medication, supplements and herbal antimicrobials from the Cowden Protocol. When I began treatment, I had a very poor tolerance for any sort of medication or supplement and would often have a bad reaction or major set-back. Thus far, I have slowly been able to increase all medication, supplements and herbal antimicrobials without any set backs.

2) I have been able to effectively manage recurring herxheimer reactions, an intensification of symptoms buy soma online us pharmacy caused by an increase in the body’s toxic burden when the Lyme bacteria die, throughout my treatment by implementing a variety of detoxification strategies.

3) I have a slight decrease in the burning sensation I often feel in my brain and spinal cord.

4) I notice an improvement in my mood and my sense of optimism.

5) There is a small reduction in my sensitivity to sound. I can talk on the phone, watch a movie and listen to music with the volume at a reasonable level.

6) I am able to get out once or twice a week for a few hours at a time. This generally involves going to the grocery store, acupuncture or the chiropractor.

7) My vitamin D level has now improved to a healthy level.  I am very happy I now have one area in which I can say I am “normal.”

These are the areas I HOPE will continue to improve over the next 4 months:

1) As we increase the killing power for the infections, this phase of treatment is proving to be more difficult to tolerate than the previous 4 months.  Over the next 4 months, I would like to be ble to work up to the full doses of the antimicrobials I am taking.

2) A recent blood test indicated hypothyroidism, which may very well be contributing to my fatigue and need to stay wrapped up in my infrared heating pad 24/7.  Rather than giving me thyroid medication, my Nurse Practitioner believes I may in fact I have an iodine deficiency and that my thyroid is lacking in the raw materials it needs to make adequate levels of the hormone. I hope to have my thyroid in a normal level in the upcoming months.

3)  I hope to be able to increase my b12 levels as they are low as well.

4) I hope to regain more energy and stamina, although this symptoms seems to be among the most stubborn of all of them.

5) I would like to see my ability to sleep improve as well as my ability to nap return.

6) I would like to begin implementing a condition program to try to regain some strength.

My four month consultation ended with Nurse P. saying, “I just want you to know I am so proud of you and all of the hard work that you have been doing. I believe whole-heartedly we are on the right path. You have done all that I have asked of you and more.” I too am proud of the commitment I have made to myself to continue on the path of wellness and hope that my efforts are rewarded with better days ahead.

In an effort to protect the identity of my healthcare practitioner, I have chosen not to use her name. I hope one day, all health practitioners are able to treat Lyme Disease freely and openly without undue scrutiny, but sadly, such is not the case yet 2014.

EMERGING AGAIN

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One of the most heart-wrenching realizations I have ever had to accept was the fact that I was not well. For years, I agonized over this truth.  Slowly, I was being swallowed up by a list of unexplainable symptoms that insidiously began stealing life’s joys and highs from me. I thought I was doing everything right. How had my life taken this path?  Why was I unable to help myself despite having spent nearly a decade helping others? Would I ever be strong enough to heal from my illness and enjoy life again?

Failure, that overwhelming presence of insufficiency, in my life was never as strong as it was the moment I said my final goodbyes and left work.  A large portion of my identity disappeared that day.  I believed rest, a few select medications and supplements would help me regain my energy, but one year into treatment, it became apparent that this would not be the case.  As relapse after relapse occurred, I became more fearful that exerting any amount of energy would cause me to go further into the depth of my illness.  Moving, talking, laughing, listening–nearly everything became my enemy as all forms of stimulation became an energy zapping experience.  More and more, I was becoming my illness.  Lyme Disease had brought me to a frightful place and I could no longer imagine what it might be like to live life with it, yet still pursue happiness.

If I close my eyes, I can imagine myself fearfully lying in the bed for months on end.  After all, I am not yet far removed soma order tracking from such days.  I recall a sad time late last fall at my doctor’s office.  While sitting across from my doctor, I tearfully told him that a full recovery was not likely, but at the very least, I hoped for a day where my mind would be filled with thoughts other than Lyme Disease and sickness.  Indeed, my expectations had become quite low.

Two weeks ago, I caught myself pondering some new thoughts.  As I thumbed through the food in our pantry, I recognized my head was filled with ideas about the future and questions like “where will our first vacation be when I am well enough to travel?”  The mental milestone that I had been hoping to one day achieve had, without a doubt, been conquered.  What was it that had shifted my thought process so I was able to dream?  I realized that somewhere along the Lyme Road I allowed myself to like, even love things again.  I gave myself permission to find me once more in spite of the struggles I may be having.

Much to my pleasant surprise, I have not relapsed and continue to slowly grow stronger and braver.  I am finding that my sense of humor is returning, that I have an addiction to quirky-patterned button up shirts and my voice as an advocate for this illness is quite loud and clear.  I will admit that rediscovering myself through this illness has been scary, but I truly like the person I see emerging.  Yes, I have a chronic illness, but this illness no longer has me.

#EmergingAgain

CHRONIC ILLNESS AND QUALITY OF LIFE, PART 1

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I had been an Occupational Therapist for nearly a decade before I became too ill to work.  Prior to the decline in my own health, I had seen patient’s with a wide variety of diagnoses — rare brain tumors, cancers, Multiple Sclerosis, and Scleroderma just to name a few.  Although the pathology of these illnesses are all quite different, it did not matter if an illness was acute, chronic, visible or invisible. Illness was still illness and it’s plight was not easy on anyone.  I learned this fact early on in my career.  I also knew that at no time could I truly relate to the variety of illnesses the 1,000+ patients I had seen, endured on a daily basis.  Where I may have fallen short in my personal experiences with my patients’ illnesses, I made up for with sensitivity, imagination, and the genuine desire to help.

Over the past few months, I have observed a trend amongst bloggers, online forums and support groups of chronic buy soma online no prescription illness sufferers feeling increasingly more misunderstood by family, friends and doctors.  I often hear phrases such as, “They just don’t get it.” or “If they could walk a day in my shoes, maybe they would understand me better.”  Obviously, there is no substitution for the experiential knowledge gained by actually enduring a chronic illness.  Unfortunately, it is unreasonable to think that most people in the lives of the chronic illness sufferer will likely ever encounter the same unique set of circumstances.  Consequently, patient’s feel lonely and isolated.  Families become confused because they don’t know how to help.  Friends may disappear because they no longer know the “right” things to say.  Doctors are often too busy to really have the time to listen to the needs of their many patients.

So how do we stop the trend of the chronically ill feeling perpetually misunderstood?  Can we, as family and friends, actually view our ill loved one with new eyes?  I believe the answer is “yes.”  I often refer to symptoms associated with a chronic illness as The Revolving Door Theory where symptoms seem to cycle in through the door one minute, and cycle out the door the next.  Rather than seeking to solve the persistent list of revolving symptoms or criticizing your loved one for having them, try a new approach.  Be willing to help improve their quality of life by displaying empathy, love, kindness and compassion.  A few simple actions can help sustain those of us on the lingering and unpredictable path of chronic illness to experience a better quality of life.    

On the next blog post, I will list ten ways in which those close to me have demonstrated empathy, love, kindness and compassion during my long battle with Lyme Disease.

AN INESCAPABLE LOVE

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If it’s possible to simultaneously feel multiple opposing emotions about sickness, then that is how I would describe myself throughout most of my battle with Lyme Disease.  I feel both terribly weak and incredibly strong at the exact same time.  I experience a great sense of loss of my former self, but somehow have gratefulness deeply rooted in my heart.  I feel depleted in energy, yet have never felt more satisfied in my life. I wrestle with the notion that I am failing in my quest to overcome this illness.  At a moments notice however, the tiniest step forward can leave me feeling victorious.  I have also known a heart-breaking kind of loneliness, the kind that can only be understood if you are separated from those things and people that you love most in life.  Without such great loneliness though, I never would have encountered such a profound sense of love.

In spite of being ill, failing, lonely, struggling, empty and weak, I am still buy soma canada pharmacy lovable.  My mind tries to comprehend and my heart attempts to absorb the magnitude of  knowing that just simply because I came to be on this earth, I am unconditionally loved. With my merits gone and my vulnerabilities on display, this revelation came to me.  Somewhere between fighting for my life and realizing I have a second chance at it, I changed.   My core, my spirit, the very deepest places of me, have changed.  I now walk this journey equipped with the knowledge that my lowest lows and biggest mistakes are wrapped so tightly in a powerful love of which I will never escape.

Would I have come to understand this truth without my illness?  I do not know, but I am thankful for the lessons learned during my most painstaking days.  I no longer feel the persistent urge to work harder, try harder or push myself more to heal.  Contentment has finally settled into my heart.