One week ago, May 22nd and 23rd, several Lyme fighters and Lyme Disease supporters gathered at the headquarters of the IDSA in Arlington, VA for the fourth annual Mayday Project protest. Those of us not able to attend the protest in-person were able to participate by faxing, emailing and using social media to deliver a 24 page document to the IDSA suggesting that they redefine the guidelines for the diagnosis and treatment of Lyme Disease. To see the document in it’s entirety, click here.
Our mission was to persuade the IDSA to “accept persistent Lyme disease as a diagnosis” (The Mayday Project, facebook.com, 23 May 2014. Web. 23 May 2014).
The Mayday Project further states “This will open the door for people to do research into the chronic form of the disease and hopefully produce a cure. This is what we ultimately want” (facebook.com, 23 May 2014. Web. 23 May 2014).
Fox 5 DC came to cover the event and has since buy soma overnight fedex produced two great segments on the devastating effects of chronic Lyme Disease and the controversial methods of transmission for this illness. Please click on the following links below to watch the videos.
I am so grateful to The Mayday Project, the people who attended this year’s protest and to those who helped to advance the cause of Lyme Disease (many while seriously ill) by contacting the IDSA through various forms of communication. It’s seems our voices are beginning to be heard and I hope and pray that our illness will finally be recognized and patient’s will have faster, better access to appropriate medical care. Perhaps next year I will be in better health and able to participate in the protests in-person. Between the local and national protests, this year’s Lyme Disease Awareness Month was a great success.
Fighting Chronic Lyme Disease can be daunting. I will admit to feeling weary and overburdened by the struggle on at least a few (okay maybe more like several) occasions. I try to be strong, but sometimes, tears are shed and I temporarily feel a sense of defeat.
A recent conversation with a friend challenged me to think of the opposite of defeat. Instead of allowing my thoughts to drift toward a place of darkness and pessimism, could I begin to cultivate an overcoming mindset in spite of my decade long journey with a chronic illness? Let me be completely honest with you. This battle has been nothing short of grueling for me and I have not always handled it so gracefully. At times, I need soul-grabbing inspiration to even force myself out of bed some mornings.
I began to flash back to several of the patients I had seen in my career as an Occupational Therapist. Some exhibited striking emotional and physical resilience, overcoming unimaginable obstacles. Regardless of the troubles that may have greatly distressed them, they were able to rise to the challenge of their circumstances over and over again. These unique people had a perception about life and adversity that enabled them to conquer weariness and repeatedly maintain a prevailing state of mind.
I believe there are lessons I can learn from these extraordinary individuals that have been placed in my life over the years. Rather than allowing myself to deviate toward the negative, I think it is possible for me to further develop an overcoming attitude as I walk through whatever situation lies before me by being mindful of the following 4 principles.
1. Rather than being lifted out of a situation or going around it, overcomers accept that they often must continue to walk through it.
I have noticed something about those I admire the most. They’re honest and realistic about the uncertainties that are before them. They know that not every journey will be easy. There may even be times when the question arises, “Why did this happen to me?” but they do not dwell in this place very long. They see an opportunity for personal growth in their difficulties and are willing to take that risk. A dear friend of mine, who has been battling an obscure illness, remarked to me, “I never knew there was such strength within me. I would not have known this had I not gone through this experience.” Is it possible that going through difficulty may in fact yield a positive change in me? I aim to remain open to this point of view.
During seasons of my chronic illness, I have felt confused and angry at the drastic changes that have occurred in my life. I am now learning that overcomers give themselves permission to redefine their identity in spite of the struggles they may be having. They see light in a direction where others may see darkness. As I absorb this idea into the very deepest part of me, I find myself thinking, “Although I am now different than I was before, I know that better days still await me.” It’s a relief to me to know that an alteration in my life doesn’t have to equate to the end of my future.
3. They focus on what they have, rather than what they are lacking, and ways they can share what they have with others.
I have spent countless amounts of energy recalling what I used to do or reminding myself of what I had in my pre-illness life. These comparisons generally lead to a sense of loss and frustration. In contrast, people with an overcoming mindset choose to focus on the positive aspects of their lives. By maintaining their attention on what they do have, they can often find new and creative ways to share their gifts and talents with the world. I find that as I begin to implement these principles, I am discovering more peace within my current situation and unique moments to share my story with others.
And now, the most important attribute of all.
4. They are committed to finishing their goals.
An overcomer sees obstacles in his or her life and chooses to persevere and press onward. Many of us can start something, a new project, a new business, the pursuit of better health, etc. However, not all of us have the ability to finish what we have started. Some of us lack endurance for the ups and downs of the journey and give up before our objectives have been attained. Call it cock-eyed optimism, foolishness or sheer faith, an overcomer can see even the slightest improvements as advancement and uses that momentum to continue in pursuit of the goals they have set for themselves.
Although we may find ourselves in unexpected situations at times, cultivating an overcoming mindset can make all the difference in our lives. It will allow us to discover hope, beauty and life even in the midst of our darkest days and celebrate the milestones during the better times. Instead of being defeated by the seemingly impossible nature of our circumstance, we can actually emerge strengthened, transformed and with the ability to celebrate the smallest victories.
May is Lyme Disease Awareness month. Today, May 16th, on a rainy and unseasonably cold day in Chicago, along with some of my fellow Lyme fighters, I went downtown for a peaceful protest in front of the Illinois State Medical Society Headquarters on the first day of a two-day event.
My friend in Lyme, Jenny, (yes, there were two of us) met me and brought me a lime green t-shirt to wear, with “Team Jenny” written on the back. She and much of her family, spent the last few days preparing signs and t-shirts. The event organizers assembled tote bags filled with Continue reading →
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.
Today, May 1st, kicks off Lyme Disease Awareness Month. I will be tweeting a new fact about this disabling illness everyday in an attempt to educate the public and the medical profession about the devastating effects of this disease. I hope you will join me in my efforts. Let’s make May, 2014 the most successful Lyme Disease Awareness Month in our country to date!
Lyme Disease Awareness Month
1. Lyme Disease is “The Great Imitator,” mimicking over 300 diseases like ALS, MS, Parkinson’s, Alzheimer’s and Rheumatoid Arthritis.
2. Lyme Disease is named after Lyme, Connecticut, the town in which it was first discovered.
3. The first known cases of this disease occurred in 1975 amongst a group of children and adults in Lyme, CT.
4. The first Lyme Disease sufferers displayed unusual arthritic symptoms.
5. In 1982, Borrelia Burdorferi, the bacteria that causes Lyme Disease, was discovered.
6. In 1982, The Arthritis Foundation developed the first brochure on Lyme Disease.
7. Federal funding became available for Lyme Disease research, education and surveillance in 1991. I am unable to locate figures of this initial funding, but I was able to track down some statistics for the current year. According to PLOS, a peer-reviewed, open-access medical journal, Lyme Disease is 6 times more prevalent than AIDS in US. For 2014, the federal government has budgeted $23.2 billion for domestics AIDS research, education and programs. For Lyme Disease treatment, prevention and education, the government has budgeted a paltry sum of $9 million. Yes, $9 million to an epidemic that is 6 times more common than AIDS.
8. From 1998-2001, an attempt was made to make a Lyme Disease vaccine.
9. Lyme Disease is the most common tick borne illness in the Northern Hemisphere.
10. In 2013, the CDC released a statistic stating 300,000 people are diagnosed with Lyme Disease each year in the United States. That was 10 times the amount of people than the CDC had previously reported.
11. Pets can also contract Lyme Disease. A unique characteristic about this illness in dogs is that symptoms don’t start to appear until 2-5 months after the initial infectious buy soma medicine bite.
12. Lyme Disease is most often contracted in the months of May through August.
13. Lyme Disease cases have been reported in all 50 states.
14. Lyme Disease has been reported on every continent in the world except Antarctica.
15. 25% of reported cases of Lyme Disease occur in children.
16. Typically, Lyme Disease is transmitted through a bite of an infected dear tick.
17. Most ticks carry multiple disease-causing pathogens called co-infections.
18. A single tick can host up to 30 different pathogens such as Bartonella, Babesia and Mycoplasma.
19. Ticks as small as a poppy seed can deliver a bite that goes undetected.
20. Some mosquitos, flies, mites, fleas rabbits, rodents and birds have also been found to carry the Lyme Disease bacteria.
21. Less than 50% of infected people exhibit the classic bullseye rash.
22. The acute stages of the infection may present as flu-like symptoms. However, many people will remain symptom free for a time, but can develop Lyme symptoms months, years or decades later.
23. The spiral-shaped Lyme bacteria is hard to detect and hard to kill.
24. Health insurance often does not cover treatment for Chronic Lyme Disease sufferers.
25. The medical community is in opposition over diagnosis and treatment guidelines for Lyme Disease.
26. The most common methods of testing for Lyme Disease are the ELISA and the Standard Western Blot Tests.
27. The ELISA and the Standard Western Blot tests are often not sensitive enough to detect Lyme Disease.
28. Improved testing does exist through labs IgeneX and Fry, but patients are often left to self navigate getting these tests done.
29. The current treatment guidelines suggest that a 2-4 week course of antibiotics should be sufficient to “cure” Lyme Disease.
30. The current guidelines do not take into account duration of time one has had the illness, involvement of co-infections or that the Lyme bacteria can evade detection by the antibiotics and remain undetected from the immune system.
31. If you suspect you may have Lyme Disease, An LLMD, (Lyme Literate Medical Doctor) is specially trained in the diagnosis and treatment of Lyme Disease.
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.
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.
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?
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.
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 becomingmy 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.
