Tag Archives: Chronic Illness

9 THINGS YOU WON’T SEE POSTED ON MY FACEBOOK PAGE ABOUT LYME DISEASE…UNTIL NOW

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When I began treatment 6 months ago, I made a decision to share my successes publicly, via social media and blogging, with my friends and family.  I had hoped to paint a picture of someone who could overcome the adversity in her life and emerge changed and victorious.  The truth however is that recovery is very tricky, with lots of twists and turns along the way.  There is much trial and error involved in finding a treatment strategy that will yield even slight improvements.  I often do not post about these difficulties, shielding my friends and family from seeing the full spectrum of just how destructive this illness is.  After reading a recent statistic from the online medical journal PLOS that Lyme Disease is 6 times more prevalent than AIDS in the US, I knew I had to convey the most realistic image of what battling Chronic Lyme Disease is really like.  With Lyme Disease becoming a global pandemic, my story could very easily be the story of you or someone close to you.  So here ya go.  The 9 truths about this illness you won’t see mentioned on my Facebook page…until now.

1.  I am still homebound more than 75% of the time.

Since I have chosen to really only reveal the moments that I feel are celebratory in nature, no one sees the moments where I am too weak, fatigued or in too much pain to get out of bed for days and sometimes even weeks.  I am not a partaker in the selfie craze and don’t post sick picks.  Believe me!  Although you are not seeing pics of me in the throws of my illness, I am still very much in the midst of fighting this battle and unless remission comes to pass, I will likely be fighting it for a very long time.

2.  I am still very isolated by this illness

As you can imagine, since I am primarily homebound, the majority of my time is still spent alone.  Only on a rare occasion will I feel well enough to see someone in-person.  I don’t say this to invoke pity but rather to encourage those who may know someone who is  chronically ill to reach out to them from time to time.  It does not require much.  Just let them know they are still cared for and not forgotten.

3.  I wake up everyday, take inventory of how I feel and decide if there is enough fuel in the tank to do something or go somewhere.

Most of the time there is not. The days I feel bad still outweigh the days I feel good.  Instead, I stay home and try to come up with creative ways (like blogging) to pass the time until a day comes that I can “do” something again- which is an excellent lead in to my next point.

4.  I often have to give myself a pep talk just to get out of the house.

Fatigue, pain, a burning brain and spinal cord are constantly present.  Somedays I have the capacity to tolerate this and can rally myself to go out for a few hours here and there.  These times are still in the minority though but I hope with continued treatment, leaving the house will one day be something I can do without much thought.

5.  You will likely not be able to tell if I’m having a “good day” or a “bad day” by a photo.

Oddly enough, some of my best pics were taken on the worst days.  This is most likely due to the fact that knowing I felt so ill, I made my hubby take 25 pics before I finally found one that I deemed buy watson soma online overnight delivery “postable.”  If you saw the other 24, you probably could guess I wasn’t feeling well that day.

6  The road to recovery is actually quite bumpy.

There is no one-size fits all approach to treatment.  Some use IV antibiotics.  Others take oral antibiotics.  Still others, myself included, are using a combination of medications, supplements and herbal antimicrobials.  Nearly all of us will see several doctors over the course of our illness and try various treatment approaches until we hopefully find one that begins to get us on a healing path.  Even when we find a suitable treatment we must contend with recurring Herxheimer reactions, or Herx for short.  This is a sudden and exaggerated inflammatory response caused when injured or dead bacteria release their endotoxins into the blood and tissues faster than the body can comfortably handle it. An exacerbation of old symptoms, as well as a flare up of new symptoms, can occur.  The very treatments that aim to make us well can, for a period, make us feel much sicker.

7.  Bizarre symptoms pop up almost daily.

When my brain starts burning, that’s weird.  When my facial muscle starts twitching, that’s annoyingly strange.  When I awake in the morning to an ankle that feels like it was broken sometime during the night, that’s just bizarre.  The sudden and exaggerated inflammatory response that I spoke about in number 7, can cause a wide range of migrating and unpredictable symptoms.  Be glad I do not post those on Facebook.  You would not be able to keep up with them!

8.  Lyme Disease treatment is most likely not covered by insurance and patient’s are forced to pay out-of-pocket for some or all (in my case ALL) of my treatments.

Yes, you read that correctly.  I have paid out-of-pocket for every single doctor’s visit, lab test, medication, supplement, herb and Lyme treatment I have received for the last 4 years.  Sadly, my scenario is not uncommon as Lyme Disease places an enormous financial burden on those of us who have it.  This sum of money amounts to hundreds if not thousands of dollars per month depending on the treatment a patient may be undergoing.  43% of us are not able to work (myself included) due to the severity of our illness making the financial strain even more stressful.

9.  Despite me being ill, my husband is still as lucky to have me as I am to have him.

In the last few years, I have had several people make the comments to me, “You are lucky your husband stays with you.” or, “You are lucky to have him.”  Yes, those statements are true, however I am not less of a person because I am ill.  I still have the same heart, interests, sense of humor, etc.  We still spend hours supporting one another and making each other laugh to the point of tears.  My husband does not look at me and see a sick person.  He sees me and notices that my uniqueness has not disappeared.

Well, there you have it.  The inside scoop. An honest look at what living with Chronic Lyme Disease is truly like.  You will likely not see these topics appear on my Facebook page anytime soon, but know that my journey is far from over.  The very essence of having a chronic illness is that it is invariably, going to recur again and again.  Ingrained in me is the desire to persist so I will still continue to fight in the hopes of one day achieving a full recovery.  I look forward to celebrating many more healing milestones and experiencing life in full again with my friends and family.

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OVERCOMING INSOMNIA PART 1: SLEEP BASICS

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As an Occupational Therapist and chronic illness suffer, I am passionate about sleep. After all, sleep truly is the most important occupation you will ever engage in throughout your life. Sleep is vitally important for us to heal and rejuvenate, but for some of us, it has become a near impossible endeavor.

Sleep can be impacted by several factors including extreme stress, illness, hormonal imbalances and a poor sleep regime. I first became an extreme insomniac in 2010, when I lost the ability to sleep altogether due to Chronic Neurological Lyme Disease. One day, I was sleeping 10-12 hours a day. Two month later, I was no longer able to sleep at all. In a quest to one day return to a blissful night’s rest, I have combined my own professional understanding of the mechanics of sleep with numerous books, articles and consultations with experts in the fields of Sleep Medicine, Lyme Disease, Chronic Fatigue Syndrome, Fibromyalgia and Adrenal Fatigue. In part one of my post, I have compiled a list of basic sleep strategies recommended to help promote sleep.  In addition to treating the underlying condition triggering your insomnia, it is imperative that you tighten up your sleep hygiene to ensure it is not contributing to your inability to have a refreshing night’s slumber.  My hope is that you will find at least a few unique tips that you have not yet tried in your mission to overcome insomnia.

Finding Your Sleep Rhythm
1. Find time to go outside during the daytime hours, preferably in the morning, to get exposure to natural light. An average of 20 minutes of exposure without wearing sunglasses is generally recommended. The sunlight needs to reach the pineal gland in your brain via the optic nerves in your eyes. This exposure to sunlight will increase your brain’s production of the feel-good neurotransmitter serotonin, which remarkably, is a precursor to melatonin. Warning: Do not stare directly at the sun when outside. Doing so can increase your risk of developing cataracts.

2. Give your body the opportunity to establish a daily and nightly rhythm by going to bed and getting up at the same time each day.

3. By 10:00pm, you should stop watching tv, using the computer or your cell phone. The light from those devices may cause your body to still think it’s daylight and may halt the production of melatonin to induce sleep.

Dietary Considerations for Insomnia
1. If you have not already done so, you should quite smoking. Nicotine acts as a stimulant which can make it difficult to fall asleep. Also, nighttime nicotine withdrawal can cause you to awaken.

2. Do not consume alcohol before you go to bed. For a variety of reasons, this can decrease the quality of your sleep.

3. Do not consume caffeine after 4:00pm. This includes stimulating coffees, sodas, teas (besides herbal teas) and chocolates.

4. If you have frequent nighttime urination, reduce your consumption of liquids near bedtime.

5. Eating a small snack of protein and fat, such as a handful of cashews or walnuts, before sleep can be very helpful. This can promote a more restful night’s sleep by stabilizing your blood sugar. Low blood sugar in the middle of the night can create a surge of adrenaline buy soma usa causing you to wake up. If you find yourself waking in the middle of the night, eat another small snack normalize blood sugar before returning to bed.

Your Bedroom Environment
1. You should not use your bed for watching TV or doing work.

2. You’re room should be a cool, comfortable temperature.

3. Make your room as dark as you can or consider purchasing a sleep mask to keep out as much light as possible.

4. Continually watching the clock can perpetuate sleep problems so be sure to place the clock at an arm’s length and facing away from you.

5. If you have a partner that snores, you may need to consider buying a pair of ear plugs. If the snoring can still be heard through the ear plugs, you may want to sleep in a different room until you can find another method that enables you to sleep soundly despite the snoring.

Preparing for Sleep
1. Incorporate some mindful breathing when you first lay down to sleep to help relax the mind and body. Place one hand on your heart and the other hand on your belly. Inhale through your nose as you direct your attention to the rising of your belly as your lungs fill with air. Exhale through your nose as you feel the lowering of your belly as oxygen is gently expelled from your lungs. Repeat this sequence for 5-10 minutes.

2. Practice Corpse Pose. Lie on your back with your neck comfortably supported and your arms out to the side with your palms facing upward. Straighten your legs and let them roll outward. Allow your body to become heavy on the bed as you inhale and exhale with the natural flow of your breath. Permit your body to sink even further into the bed as you come to a state of total relaxation.  Remain in this position for 5-10 minutes.

3. If you find your mind racing, worrying or problem solving while trying to fall asleep, get up and take a few minutes to write down all of your thoughts in a journal until you cannot think of any more. Set those concerns aside and return to bed. Repeat this exercise as often as needed to calm an overactive mind.

Natural Sleep Aids
The following is a list of supplements often recommended by Integrated Health Practitioners to assist you with getting a restful nights sleep. Please consult with your physician regarding dosing, side effects and drug interactions before incorporating any of these into your nighttime routine.

1. Valerian Root
2. GABA
3. 5-HTP
4. Melatonin
5. L-Theanine
6. Magnesium Glycinate
7. Passion Flower
8. Phosphatidylserine

Additional Resources
The following three books are books that I personally have found to be particularly useful in my mission to beat my chronic insomnia.

1. From Fatigued to Fantastic, Jacob Teitlebaum, M.D.
2. Revive, Frank Lipman, M.D.
3. The Triple Whammy Cure, David Edelberg M.D.

In my next post, I will provide some additional tips and resources for those of us whose insomnia, despite having a solid sleep hygiene program, continues to persist. Don’t lose hope! This can be a frustrating situation to endure, but it is one in which improvement can, and often is, found.

 

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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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

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.

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street photo 2

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