Tag Archives: Encouragement

More Than 43,000 Pills Later: A Two-Year Treatment Update

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Saturday, October 24th, 2015

Today is my second anniversary since beginning treatment for Lyme Disease and multiple other systemic infections. I dreamed of this day. In my mind, I expected some fanfare, a sign to mark this milestone in a very long fight. In two years, I have swallowed upwards of 43,800 pills, supplements, and herbal tinctures. I make no exaggeration. I expected to be in a different place– to be well by now, back to work, and maybe even thinking about starting a family. However, today is a decidedly ordinary day in my life with Lyme.

In two years, I have spent nearly $40,000 in out-of-pocket medical expenses. I wonder how many other illnesses drain a person of their life savings and leave very little to show for it. I don’t know the answer to this. Maybe there are more, but I can only tell my story– the story of someone trying to crawl her way to the top of the highest mountain. If I close my eyes, I imagine myself reaching the long-awaited summit. I hold out hope that I will finish this climb. I am steadfast in my determination.

In two years, my cell phone alarm has rung approximately 5,840 times alerting me to take my medications. I don’t think I have ever missed a pill. It’s habitual now. Can you be a professional pill-taker? If so, I am one. It’s absolutely second nature. I eat, sleep ( as able) and take my pills– 730 days in a row and counting.

In two years, I have taken around 1,095 detox baths, 1,095 sauna sessions, and 730 coffee enemas. No, you’re eyes aren’t blurry. You read that correctly. Coffee enemas. The funny thing is that I only drank one cup of coffee in my entire life. I really hate the taste.

But, I am willing to try almost anything if it will help. The baths, sauna sessions, and enemas give my body’s natural detoxification processes a boost at removing the toxins accumulated from killing multiple infections and ingesting several medications. It’s a necessary, but inelegant part of recovery.

Some of my medications are harsh on the gut, liver, kidneys and other organs. Blood draws are a regular part of my life to make sure we are not causing more harm than good. As patients, we joke that getting well and managing our symptoms equals a full-time job. I guess it’s not really a joke since it’s actually true. Restoring my health is the most effortful task I have ever faced.

I hear rumors that I am well. Someone order carisoprodol online mentioned it to “this” person, “this” person then told ”that” person, and finally, “that” person told me that I am doing great. I am flattered people think I am doing so well, but the reality is much less glamorous.

More Than 43,000 Pills Later…

I am not cured, healed or even “well” yet. Despite two years of aggressive treatment, I still struggle every day. To quantify a good day, I function at around 40% of my normal. That means roughly 60% of my day requires me to rest. However, most days are not 40% kind of days yet. This is still better than where I was a year ago. For that, I am happy.

While my pain has decreased, my memory is better and my sleep has improved, crippling exhaustion is the invisible symptom that troubles me the most. This is not the type of exhaustion that comes after working a long day. No, “sick exhaustion” is in a category all to its own. My energy drains and my body becomes too depleted to get out of bed some days. It’s tired from this relentless, intrusive fight. Infections still run amok underneath the surface. Maybe it’s due to the facial yoga exercises I’ve been doing, my new silk, exfoliating mitten or a super healthy diet, but my illness rarely shows on my face. I continue to have ups and downs, moments where it seems like remission is in reach, and periods of going backwards. This cyclical symptomatology is the very real nature of living life with a chronic illness. Thankfully, the setbacks are less severe than they used to be.

Treatment will continue to be aggressive for an undetermined amount of time. I sometimes get asked if I am angry about having to go through this. Most of the time, I am not. I passed the point of feeling like my body betrayed me and grateful that I have a body that refuses to give up. Another person– a different body– may have quit a long time ago. There have been moments of immense joy and self-discovery in the last two years. I live for those moments.

Here’s to another 43,800 pills, unexpected moments of joy and healing milestones. Although this journey is sometimes overwhelming, I will continue to pursue my healing with faith and persistence.

Thank you all so much for allowing me to share my story with you these past two years. To my husband, family, friends, and even strangers, your encouragement sustains me along this weary road.

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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.