Full Disclosure: The kind, generous folks at Mitosynergy gave me samples of their products to review, provide feedback, and see if the products improve my energy levels (I already use their MitoLipo product).
Fatigue–like it’s a miracle I can lift my head off the pillow most days kind of fatigue–is my worst symptom. Even with more than two years of treatment under my belt, this symptom has barely budged. I have already tried dozens of things to try to combat this type of “sick” fatigue. Over the next month, I will document my progress to see if there is any improvement using the Mitosynergy products in my situation.
To begin, I filled out a Brief Fatigue Inventory to better track my progress and note any measurable changes.
Brief Fatigue Inventory:
0 is no fatigue, 10 is as bad as you can get.
1) Rate your fatigue level now.
Rating: 8
2) Rate your usual level of fatigue during the past 24 hours.
Rating: 8
3) Rate your worst level of fatigue during the past 24 hours.
Rating:9
Note: I had horrible insomnia last night, and I was exhausted to the point where I did not know if I could walk to the bathroom.
D. Normal work (including work outside the home and daily chores)
Rating: 7
E. Relations with other people
Rating: 7
F: Enjoyment of life
Rating 6
Note: Even in the moments of craziness and uncertainty, I still find moments of joy.
I will incorporate the following products into my current treatment and detox protocols:
1) MitoMelts– a powder that you take under your tongue with mitochondrial-specific nutrients to optimize neuromuscular health. The product tastes pretty good–like a SweetTarts candy.
2)GreenTeaSynergy Plus– a room temperature tea you sip throughout the day. It has a blend of green tea, noni, and Humic Acid; with Humic Acid shown to have viral inhibitor properties.
3)MitoMudBath Extreme Cleanse– a detoxifying mud bath with a blend of peat, pine essential oil, wintergreen essential oil, sulfur, and glycerine. This product drains easily, even in an Old, Chicago tub like mine.
Getting ready for my first mud bath.
I will write an update on this new addition to my treatment in the next few weeks. I hope and pray I can make a significant dent in this fatigue once and for all!
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.
As you might have realized from my blog, I love Pilates! “Draw your abdominals toward your spine.” “Wrap your shoulder blades down your back.” I hear those cues in my head when I am practicing.
I like the way Pilates makes me feel. I feel energized instead of worn out. I feel lengthened instead of compressed. It boosts my mood and helps me feel like I am getting buy carisoprodol stronger throughout my lengthy, no-end-in-sight-any-time-soon, Lyme treatment.
I recently shared my experiences with Mackay Rippey from Lyme Ninja Radio during a podcast. We covered a lot of subjects, from treatment to herxing, acupuncture to Pilates and pretty much everything in between (even coffee enemas— oh my). Below is the link to our interview. Please take a listen and as always, feel free to leave me a comment.
First, thank you so much for your nice words and comments the past few months regarding my post, A Life On Pause, through Facebook, emails, my blog and elsewhere. Tens-of-thousands of people around the world read it! I am speechless. That is the greatest compliment I have ever received. The article is even scheduled to be printed in the upcoming issue of The Lyme Times, a quarterly journal through LymeDisease.org.
I have been hesitant and excited to write this update. Hesitant because, well, there’s the fear of relapse in the back of my mind, and excited because I finally made a dent in this disease. Lyme is a sucker punch of an illness and has delivered enough low, unexpected blows to me to last a lifetime.
I’ve been treating Lyme Disease and a host of overlapping conditions for nearly two years now. My condition fluctuates between bad and worse days. This pattern has been consistent. My treatment has been intense, occasionally hurling me backward before I can move forward again. Quitting is not an option, though I sometimes fantasize about throwing all my pills in the trash. It’s not easy to take upwards of 60 pills, herbs, tinctures and supplements each day.
This is my life. When the alarm sounds, it’s time to take my medications. I have taken medications in a Chipotle bathroom, the back of a taxi, dressing rooms, the hair salon, the grocery aisle at Target, in the middle of a church worship service, even, on a Ferris Wheel (once).
This is my present, strange reality. And there are still years of treatment ahead.
However, I made a promise to myself early on in my treatment that I would never measure my progress by how anyone buy soma drugs online else was doing. I would choose the treatments that felt right for me. I do not chase after treatments in the hopes of finding a faster fix to my circumstance. I don’t have the financial means nor the energy to do so. I accept that recovery, remission and a better quality of life take time and effort. It’s more work than I could ever have imagined.
But my story begins to take a favorable twist. Those who see me, talk with me or follow me on social media know there has been a subtle shift occurring in my symptoms. I have better days. At times, even a good day:
I felt the wind whip through my hair and the sunshine on my face as I sat by the lake. I shared delicious dinners with long-time friends. I tasted my first Stanley’s donut. I walked through my neighborhood park and breathed in the fresh air. I had a wonderful 4th of July with my mother and Tom and only required a few days to recover. I took the dogs to the park. I danced to an old workout video. I hung upside down from some monkey bars. I even napped! Yes, insomnia that tortured me for years is truly improving. There is such happiness in these small victories for me.
When I look back on the last year and ten months, I feel proud. I am proud of my attitude through this journey, proud I persevere along the path of recovery and proud of the life I am rebuilding bit by bit. This has been my greatest challenge, but I now know things do get better.
It’s nighttime. Lying in bed wide-eyed and frustrated as the clock ticks, you pray for just a few hours of precious sleep. Insomnia plagues you. Your usual sleep medications have no effect on you tonight. It’s as if you just swallowed some candy instead of a sleeping pill. Tears stream down your cheeks. You bury your face into your pillow and weep softly so as not to wake anyone else. Is this really happening again? As the night bleeds into yet another day, time becomes irrelevant as there is never any period of rest. The sleep deprivation is a cruel form of torture for you with no end in sight anytime soon.
If you could nap during the day, the constant sleeplessness might be easier to tolerate. Lyme Disease wiped out your ability to nap years ago and no one has any solutions for you. Some people want riches or fame, but you, you just want a brain that functions normally. To have a brain that sleeps, isn’t foggy, jumbled or forgetful, is your greatest wish.
A streak of bright, orange light bursts through the curtains. Damn it! It’s morning now. Utterly depleted, you continue with your idle rest in bed as you wait for the alarm to go off alerting you to take your medications.
Almost every medication prescribed to you requires you to take it on an empty stomach. These are instructions you find particularly challenging to follow. Sometimes, you wait more than two hours before eating breakfast just to squeeze in your morning handful of pills.
Invariably, some medication or supplement gets missed. You panic as you rework your entire medication schedule for the day. There is no room for error anywhere. Hopefully, tomorrow you will get back on track. Treatment for Chronic or Late Stage Lyme Disease is regimented and intense. You persist through these demanding protocols in the hopes of having a normal life again.
With the multitude of symptoms you experience daily, you’ve become too ill to work. Career advancement is not a realistic option for you anymore. No landing your dream job. No starting your own business. The longer you struggle with Lyme Disease, the further away the reality seems that you will ever go back to what you once were.
Lyme Disease can be disabling although some medical and political establishments will tell you it’s not even a real disease. Oh, how you would love if this disease were fake, a figment conjured up by your wild imagination. That somehow seems treatable and much less expensive.
But it’s not an elaborate fabrication or something you’ve concocted for attention. You’re not lazy, unmotivated or a head case. You are not choosing sickness so you can lay in bed all day. This illness is real and it comes with a hefty price tag.
If you have Lyme Disease, you will buy soma us pharmacy spend all of your money – every last cent – trying to get well. You will invest tens-of-thousands, if not, hundreds-of-thousands, of dollars on trying to save your life. If you’ve had this illness long enough, you’ve maxed out your credit cards, probably drained your savings, pensions, IRAs or 401k’s. Evidence of a life before Lyme quickly vanishes.
Physicians most literate in treating Lyme Disease are not covered by your insurance. To get well, you will likely need a multifaceted approach to treatment, including regular testing, prescription medications, supplements, and herbal medications. The effort to repair the damage that chronic Lyme Disease has caused is costly, burdensome and at an enormous out-of-pocket expense to you and your family.
Yet, you continually find the strength to persevere. You hold on to hope with fists clenched so tight your knuckles change color. Your hope is in a better quality of life. Your hope is in a future filled with joy and less suffering.
During your battle with Lyme Disease, you have not been able to attend weddings, baby showers, family holidays, or outings with friends. You have had to say, “no,” more than you say, “yes.” By now, you feel the pain of isolation. You wish people understood your illness better or, at the very least, that you had some special superpower that allowed you to articulate the torment raging on inside your body.
You will continue to battle this illness with everything you’ve got, but there’s very little energy left (if any) beyond dragging yourself through each day. You need continued help and support no matter how long this journey takes, but you find most relationships cannot endure this level of hardship over the long haul. Your heart badly hurts as you sense relationships beginning to slip away.
Sadly, most aspects of your life are on hold indefinitely due to this illness. Recovery is long. Thoughts about dating, getting married or planning for a family fall to the wayside. You feel this illness stealing some of life’s most precious opportunities from you as you wait for the moment when you might one day be well again. The future seems so uncertain.
Like so many other chronic Lyme patients, you constantly feel the slow, suffocating effects of a life on pause.
Note: May is Lyme Disease Awareness month. I see so many friends struggling right now that I wrote this piece in an effort to release some feelings I’ve had buried inside of me for a long time. This is my story, but it also includes the experiences of so many others I have talked with in the past few years. Many have not yet found a way to communicate the pain and heartache that comes from having this illness. I hope you will take a moment to read A Life On Pause.
With some light-heartedness and a twist a of humor, we created two films. First, I “take a bite out of Lyme” in my film by showing my daily regimen of supplements and medications I ingest to help me get out of bed each day (well, some days at least). I have hope that I will one day be in remission from this terrible illness and I strive to keep laughing and smiling through it all.
As my husband, Tom has also been impacted by my battle with Lyme Disease. Ever the comedian, his film demonstrates that sometimes Lyme just ruins things-your day, your month, an outing with a friend or even just a simple cup of coffee.
For me, the highlight of this campaign came when the Real Housewives of Beverly Hills star and Lyme Fighter, Yolanda Foster, commented “Amazing” on my film and retweeted it. Luckily, I was already laying down when I saw the tweet or I might have fainted.
What began as a grassroots campaign started by 5 amazing woman (Julie, Melissa, Özlem, Kim and Lisa), has gained order soma overnight cod some serious traction using social media. Celebrities that have already taken the challenge and showed us their best sour faces include:
Angeli Vanlaanen, Olympic freestyle skier
Ronde Barber, retired football cornerback for the Tampa Bay Buccaneers
Yolanda Foster, Lyme Fighter and Reality star from the Real Housewives of Beverly Hills
Elena Delle Donne, WNBA basketball star
Erin Andrews, journalist and host of Dancing With the Stars
Tom Bergeron, host of Dancing With the Stars
Tiki Barber, retired football running back for the New York Giants
Debbie Gibson, singer-songwriter, record producer and reality TV star
William Shatner, actor
Dr. Oz, health expert and talk show host
When the Challenge aired on Dr. Oz last Thursday, we knew we were making some serious progress with this campaign!
I applaud the efforts of the LDC team and am so proud of the hard work by the entire ?Lyme community. It’s just mind-blowing what a group of people can accomplish. Although it may not always seem like it, PEOPLE ARE LISTENING and PEOPLE DO CARE.
With May being Lyme Disease Awareness month, be encouraged to keep sharing your stories, posting your videos and pics of you taking the Lyme Disease Challenge and challenging others to take it too. Let’s keep this momentum going!
My dear friend, Lisa, sent me a gift this past Christmas. It was a plastic, motion-sensor cardinal with instructions that I could throw it away if it was too annoying.
Cardinals are near to my heart. For a year and a half, I was too ill to leave the house. Through the office window, I spent many mornings watching as a pair of cardinals sang beautiful duets with each other. Their colors were mesmerizing. For me, they became a symbol of hope to remember there was life outside the walls of my apartment.
As I grew stronger and began to leave the house, I no longer saw my two, favorite birds.
Glimpses of them are rare these days. From time to time, I hear their lovely songs cascading from the treetops. I like to imagine the cardinals are bringing hope to someone else.
Every once in a while, a sweet friend or family member will send me a cardinal knickknack as a reminder of how far I’ve come on this journey. I opened Lisa’s gift and excitedly pulled out the small strip of paper that was blocking the motion sensor.
The plastic cardinal began to sing, “Tweeeet. Tweet tweet. Tweet tweet. Twee-e-e-e-eet.”
“This really works,” I thought to myself as I perched the cardinal on the mantle.
Dog number one walked buy soma pills online past and the cardinal immediately began to sing.
Then, dog number two walked past and sure enough, it started to sing again. In fact, dog number two walked in front of the cardinal a few times, each time triggering the motion sensor.
Once again, the cardinal chirped when Hubby came close.
Realizing that the mantle was probably not the right place for this gift, I did what any sentimental gal would do with a hypersensitive, plastic, motion sensor cardinal:
I stuffed it in the sock drawer.
I couldn’t possibly toss it in the trash! I was very touched by Lisa’s thoughtful gesture.
Last night I had terrible insomnia from recently adding some medications to my treatment protocol. Frustrated by my inability to fall asleep, I got up to take the second half of my sleep meds. I fumbled around in the darkness until I had my pill container in one hand and a glass of water in the other. I took my sleep meds and set my glass on the dresser.
As I turned to crawl back into my bed, I heard a muffled sound coming from the top dresser drawer.
I awoke this morning to some wonderful news. An article I had submitted to Mind Body Green a few weeks ago has gone live!
After being bedridden and housebound for such a prolonged period of time, people often ask me, “What are you doing to regain your http://nygoodhealth.com strength?” Please click on the link, How Pilates is Helping Me Heal From Lyme Disease, to learn how The Pilates Method of exercise is an important tool in my recovery.
What are you doing to improve your strength? Please feel free to leave a comment below.
In 16 years, not a single snow storm or blizzard deterred me from seeing my family during the Christmas season.
Dating back to my freshman year of college, I would pack the car to the brim and drive to Minnesota. I usually brought a giant pile of dirty clothes to wash at my parents house, as I had typically run out of quarters by the end of the semester. In the years I had my job as an Occupational Therapist, I loaded the car with gifts that I had proudly purchased for my family. When I got married, my husband became part of my holiday traveling tradition also.
By 2011, I was no longer well enough to take those trips.
Christmas with my family is huge. Parents, sisters, brothers, cousins, children, grandchildren and friends all congregate at my Aunt’s house in what invariably turns into a 2-3 day marathon of food, fun and some serious card playing. Games like Canasta, Continental Rummy and Nuts have been a family tradition as far back as I can remember. I grew up playing cards and learned to count while playing poker with my grandmother. My cousin, Julie, is the undisputed card-playing champion of the family. Her hands move so fast, at times they’re blurry.
I miss those days.
Not yet strong enough to endure the Christmas festivities, I find myself trying to create new traditions in Chicago.
In our apartment, we have a small, buy carisoprodol canada decorated tree that sits on our mantel. We tried a 7 foot tree one year, but my beagle tried to eat it so we had to downsize.
Every year, I pose the beagles in costumes just long enough to snap a pic or two. I have a reindeer, a Santa suit and a snowman costume. The costumes are decided based on their cooperation. This year, I had a pocket full of yummy treats so I had their full participation.
Like last year, my mother will be coming the day after Christmas. We will partake in our annual tradition of driving around looking for the best displays of Christmas lights. We have been doing this since I was a child, first in my hometown of Winona, and now in Chicago. This is one of my favorite Christmas-time activities.
There are moments however, where I realize I am not yet adjusted to my life with Lyme and such an uneventful holiday season. There will be no big, family meal and no presents to unwrap, as every spare cent we have goes towards my treatment. Such quietness seems foreign to me.
Hopefully, I will one day soon be able to enjoy Christmas and the busyness once again!
Merry Christmas and Happy Holidays from me, Tom, Seven (15 yrs) and Caylie (12 yrs)!
The other day, I was walking at the mall with Tom, enjoying the Christmas displays and celebrating how far I have come. I have been tolerating my treatment plan well and slowing increasing a new supplement called Mito Lipo to improve my mitochondrial function and give me more energy.
“I think I am turning a corner with my health.” I cheerfully said. To illustrate my point, Tom abruptly made a 90 degree turn in front of me while dancing.
The day after my outing however, I was hit with such severe fatigue that I have since been cheap soma online overnight cooped up in my bed for the last two days. I don’t do lying in bed well anymore. I’ve got dreams, ideas and things I would like to accomplish. My mind maybe capable of doing more, but my body does not always receive the memo.
So, here I lay in my cozy bed viewing elephants on my iPhone as I recuperate. I know this is a temporary set-back. Next, I will check in with various members on the local Lyme forum and chat with a few friends on Instagram. What would I do without social media?
