Tag Archives: IC

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.

CELEBRATING SMALL VICTORIES WITH MY MOTHER

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September, 2012

After my husband left the house to run some errands, I found myself sitting on the dining room bench. I don’t recall where I had just come from, or where I intended to go. I only know I was drained, so very exhausted. My brained seared badly as if salt were being pored into an open wound. I do know however, that I was sitting on the bench to rest. I often wondered how one could suffer such exhaustion and still have legs that held them up. Alone, resting on the bench, I pondered if a day might come that my legs no longer had the strength to carry me. Would I crumble to the ground? Would I cease to exist? I let my mind wander. Before I knew it, I was enwrapped in my thoughts and staring at the hardwood floor. This was indeed a very bad day.

“Hello. Hellooo.” a familiar voice called up the stairwell. Absorbed in my thoughts and unable to break away from them, I only faintly heard the voice. Suddenly the door opened and in walked my mother.

“Mom! What are you doing here?” I called to her.

I had not seen my mother for almost a year as she lives in Minnesota. Although she had been willing to come much sooner, I had been bedridden for the past four months suffering severe neurological symptoms. I could not tolerate excess noise or stimulation well and repeatedly declined her invitation. I kept hoping that I would spontaneously awake to a better day, week and eventually, a better month. Then, I would have visitors, discuss my short-lived relapse and celebrate being back on the healing path with a nice dinner out on the town. However after several month of declining health, it became apparent that those days were not coming anytime soon.

Knowing I most likely would continue to tell my mom not to come, my husband had surprised me by arranging the arrival of my mother by train for me. My mom briskly walked toward me as I sat on the bench. She hugged my skinny body. With wet, sunken in eyes, I looked at her and said, “I can’t believe you are here!”

Embarrassment flooded over me as the strong , independent daughter she once knew was no longer present. I anticipated it would be difficult for her to see me in this condition and that she would feel powerless to help in this circumstance. I worried I would not have the strength to keep her encouraged. I had always buy legit soma online maintained a positive outlook about recovering from the mystery illness that was believed to be Chronic Fatigue Syndrome, but I had deteriorated so rapidly this time, I was uncertain what the future held for me. Many tears were shed that weekend. Tears from a mother realizing how ill her daughter truly was and unable to relieve my suffering. Tears from me knowing how difficult this must be for her to see me this ill.

I have some recollection of my mom rubbing my back to console me as pain radiated along my spine while I lay in bed. Much of the rest of her visit is a blur. In addition to high doses of sleep medication, endless bouts of insomnia and profound fatigue contributed to a brain filled to the brim with fog. Two days later, my mother returned home.

December, 2013

More than a year had passed since my mom’s visit in 2012. Over that time, there had been many low points from my illness and my mother was able to support me from a distance through phone calls and daily Facebook chats.

It had been suspected that I had Lyme Disease based on clinical symptoms for a year, but tests as recent as this past October were finally able to to confirm it with much greater certainty and I was able to begin a more targeted treatment program as of November. Although progress is slow, I have been able to reach a point of more stability in my symptoms and I was recently able to invite my mother for a 4-day visit to the city.

I am no longer completely bed bound and am able to make short trips out for a few hours at a time once or twice a week. I still have a giant mountain to climb before I reach the top, but even mild progress in a year is worth celebrating. Knowing this, my husband planned a surprise trip for my mother and I to Tiffany’s on Michigan Avenue. We chose to pick out a matching pair of Mother-Daughter Band Rings. My mother is more than just “mom” to me. She is my friend and I am so happy to have had her here with my husband and I over the holidays to celebrate yet another small victory in my Lyme journey.

Band Rings from Tiffany's

Band Rings from Tiffany’s

Mother-Daughter Matching Rings from Tiffany's

Mother-Daughter Matching Rings from Tiffany’s

MY 2014 NEW YEAR’S RESOLUTION

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My dogs have sniffed every area of my house thousands of times over, maybe more. No matter how many times they revisit the same corner or the same front yard, they do so with such a sense of excitement and optimism. Each new day brings buy soma medication online about the potential to discover something amazing. My New Years resolution is to be more like my dogs.

Seven and Caylie at the Beach

Seven and Caylie at the Beach

 

Caylie and I at the Beach

Caylie and I at the Beach

INSPIRATION

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“Never ever confuse the end of an era in your life as the completion of your destiny.”

-Brian Houston, Pastor, Hillsong Church, Australia

A VIBRANT POP OF RED

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Symbols.  I don’t really have any.

Call me “pragmatic” “a realist” or “unimaginative,” but I prefer a thing to be an actual “thing” or I am just not that interested.  I have a pretty black or white stance on this matter. At least I did, until a vibrant pop of red entered into my life last year and changed everything.

Fatigue, insomnia, muscle pain and weakness began to take over my body. My brain and spinal cord burned unceasingly for months, as if I was being torched from within. I spent more hours in the day crying in agony, than not. I was told I had an “unfortunate” case of Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity Syndrome.  “It won’t kill ya,” the doctor said, and advised me to begin homeopathy. Sadly, I had grown much too weak to leave the house, now. In fact, I had become bedridden. Sounds, from the low hum of a television, to banging pots and pans and even the softest of voices became amplified 10-fold in my head, beating against my ear drums, as if someone where screaming at me. I frequently retreated to my quiet, dark bedroom to be alone. Days became weeks, weeks became months and suddenly I was a shell of my former self trapped in the only room I could find some refuge. Actually, doctor, I WAS dying slowly and agonizingly.

On a rare day, I emerged from my dark room weary and blurry-eyed. Despite having no appetite I told myself, “You must eat. You can do it slowly, but you must get some food into your system.” I managed to muster the strength to crack two eggs into a frying pan, stand the three minutes required to cook them and walk to our office, whereby I promptly collapsed into a chair. Tears streamed down my cheeks, as I was already well-versed in the misery that each day brought. Today would be no different.

Suddenly, a staccato tweet.

A soft chirp, unlike any I had ever heard, became faintly audible through the window. Curious, I opened the blinds.  As my eyes adjusted to the unusual encounter with the sun, I saw the most beautiful shade of red I had ever seen in nature. Not more than 5 feet from me sat a male cardinal perched in all his brilliant glory on the tree tops below my window. Twenty feet to my right, stood his mate on a wood post fence. Although smaller in size and different in color buy soma online 500mg than her male counter part, she was no less spectacular. With her light green feathers, red mohawk and neon orange beak, her uniqueness glowed in the morning sun.

I watched their interactions with wonder and excitement. She would speak to him. He would speak back. In an awestruck moment, a beautiful duet was forming before my very eyes.

Then, they were gone.

I sat back in my chair with my plate of now cold eggs and deeply inhaled. Something felt different inside me, at least for the moment.  The tears had stopped, my breathing had slowed and HOPE, hope had appeared in my heart. Two gorgeous cardinals, birds the size of the palm of my hand, reminded me that there was still a world outside my walls to experience and that there was still life inside my very weak body.

Through the window, I began to have daily encounters with these two precious cardinals for nearly a year. They would spend hours in the trees surrounding my house and I could recognize their calls to one another. On a day when my brain and spinal cord were burning less, I could walk down the front steps with the aid of my husband and we would watch this interaction in person. No matter how many times I saw it, I continued to remain captivated by them and experience a sense of hopefulness deep in my soul.  As the days began to grow shorter and colder, I worried that I might not see them again. During one of our back office sitings, my husband had his camera ready and was able to capture the male for me in the hopes of keeping my spirits lifted through the long Midwestern winter.


Nearly a year has gone by since I have last seen my cardinals. It seems as though they may have taken up residence in a nearby neighbor’s tree.  I was told they lost their babies in one of spring’s torrential storms.  From time to time however, I can still hear them making beautiful music together in the trees that surround my house. Although I haven’t been able to catch a glimpse of them, just knowing they are there brings a constant reminder to me that there is always hope, beauty and life even in the midst of the darkest times.  A dear Lyme friend reminded me of that as well when I unexpectedly received this sweet gift of encouragement from her.

Hope Cardinal

TAKING A BREAK FROM LYME DISEASE

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The last few days, I have been taking a much needed mental vacation from my illness, from obsessing over it, researching it, chatting about it and just non-stop thinking about it.  My recently developed philosophy has been to celebrate small victories and re-learn to enjoy my life again.  The following images of my birthday and short film following an afternoon with a friend, are some of the most fun days I have had in a very order soma online us pharmacy long time.  I may still be ill, and as recent test indicate, quite ill, but I am determined to challenge the notion within myself that I simply can not do or can not enjoy anything anymore.

Below are some photos my husband took during my birthday celebration with just the two of us two days ago.

oliver peoples photo 1

street photo 2

prada photo

Below is a Thank You short film for my friend Vanessa.