Looking back at this pic from three years ago, I choked up a bit. I may “appear” okay, but inside my body, a serious war waged on that had me fighting for my life. What many never knew is that I am leaning on Tom because I was too weak to stand on my own. My hair is long and uncut because I was too sick to endure a trip to the hair salon. My glasses were broken because I stepped on them 4 months buy soma 350 mg online prior and was not strong enough to go to an eye doctor. I was bedridden 90% of the time and remained that way for 18 agonizing months. After this picture was taken, I immediately had to lie down. The girl in this picture knew she would fight an invisible battle for the rest of her life– a battle that would rarely ever show on her face. I am so glad this girl was brave, had perseverance and most importantly, never gave up. ?
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.
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!
I encountered a discouraging bump in the road last week. In addition to Lyme Disease, I have an inflammatory bladder condition called Interstitial Cystitis (IC).
Marked with bladder pain, urinary frequency and urgency, I have had this condition since 2005. It was fairly well-controlled for about 4 years. I even thought the most difficult days of dealing with IC were behind me. Unfortunately, this flare-up shows my bladder has more healing to do.
As I struggle to understand why I am once again experiencing such severe bladder symptoms, I decided to take a specialized urine test from a lab called Pathogenius. The lab performs testing at two different levels using a culture and DNA detection. My nurse practitioner only recently began working with this lab. Whether or not a patient improves using treatments designed around this testing method, remains to be seen.
My level one culture came back negative. However, the DNA portion of the test detected abnormally high levels of a bacteria I was unfamiliar with called Prevotella Bivia. This bacteria is not a tick-borne infection like the others I am battling. In fact, some amount of this bacteria appears to be present in healthy individuals and poses no trouble to them.
Perhaps my immune system, already suppressed by multiply systemic infections, could not keep this bacteria in check and my bladder became symptomatic again.
That’s my best guess.
After reviewing the results, my nurse practitioner presented me with two treatment options:
Option A is to instill medication directly into my bladder via self-catheterization. A two-week course of medication and supplies arrives at my house from a compounding pharmacy. It’s not covered by insurance, so my out-of-pocket cost would be somewhere between $200-$500. A second, two-week round of the instillations is usually required. For a one months supply, the total cost is between $400-$1,000. This is in addition to the $1,000+ per month my husband and I currently pay out-of-pocket for my treatment.
The pros of this treatment are:
1) It delivers medication directly into the bladder so the antibiotics do not have to bypass the GI tract where it can disrupt normal gut flora or interact with the other medications I am taking.
2) It’s an innovative new approach to treating interstitial cystitis.
The cons are:
1) It’s expensive to do and I question whether it’s sustainable for the average person over a long period of time. Several courses of treatment could be required to achieve maximum benefit.
2) Repeatedly doing bladder instillations carries the risk of contracting a urinary order soma online from canada tract infection, which is then treated with another oral antibiotic.
3) This treatment is so new that it is not yet known what the rate of success is.
A pit in my stomach formed as I did the math. With our current situation, I felt Option A would not be feasible for me. It’s just too costly.
As FOMO set in (Fear Of Missing Out on a treatment that might be THE treatment to finally cure me), I reluctantly asked for an option B.
This option is to add yet another antibiotic to my already rigorous treatment. In this case, it would be the broad spectrum antibiotic, Clindamycin.
The pros of this treatment are:
1) It’s cheap. In fact, I would pay nothing with my insurance.
2) In addition to treating the Prevotella Bivia in the bladder, it also targets the Lyme bacteria in the nervous system.
The cons are:
1) Since this antibiotic kills bacteria from such a broad spectrum and I am already on an aggressive antibiotic protocol, it could increase my risk of developing candida overgrowth or worse, a potentially life threatening GI infection called C-Diff.
2) I need to take this antibiotic three times per day, making it difficult to schedule it around all my other medications.
3) It’s also hard on the digestive tract.
4) Because this antibiotic has penetration into the nervous system for the Lyme bacteria, there is a high likelihood of experiencing an increase in my neurological symptoms as the new antibiotic kills those bacteria.
Truthfully, I really didn’t like either of the options. Neither annihilating my gut nor going in debt seem like great solutions. In the end, I chose the only affordable route for me. I added the fourth oral antibiotic to my treatment for the next 10 days. Following completion of this antibiotic, I will re-test with Pathogenius to see if there are additional infections.
During this course of treatment, I have significantly upped my intake of probiotics and digestive enzymes to help protect my gut and decrease the risk of C-Diff and Candida overgrowth. As predicted, I am noticing an increase in my neurological symptoms and worsening insomnia has been the most difficult symptom to endure. Luckily, I am already on day 6 of my 10 day plan.
I am hoping this new treatment will shed light on potential causes of Interstitial Cystitis in some people and yield improvements in my symptoms.
I will post an update after I have completed this course of treatment.
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.
The other day, I couldn’t find my cell phone. I looked under the bed, on top of tables and shelves and literally under every scrap of paper in the house. It had vanished.
Where could it be? I hadn’t even left the house in a week due to a blizzard and not feeling well from changing up my treatment plan.
Suddenly, I had an inkling, a vague recollection of what I was doing when I last had my phone in my hand.
I ran to the kitchen and threw open the refrigerator door. There, on the top shelf next to a loaf of Udi’s Gluten Free bread, was my cell phone! (This would be the appropriate place to insert an emoticon- the one with the wide-open eyes and a line for a mouth that basically says, “Oops. I did something stupid.”)
As I reached in to grab my already chilled phone (I estimate it had been in there for about an hour) I said out loud to absolutely no one, “And this folks…This is a perfect example of why you too should have the Life Proof cell phone case!”
I’m sure everyone has left their phone in the refrigerator at least once, right?
I have a legit excuse for my absent-mindedness. I promise.
About two weeks ago, my nurse practitioner decided it was time to intensify my treatment. This buy soma online fast generally leads to a few steps backwards as my body adapts to the changes. This time around however, the changes seemed to have stirred up some old symptoms with a vengeance.
We included the antibiotic, Flagyl, into my protocol to target bacteria that are in a specific form called, “cyst form.” This antibiotic packs a powerful punch and has left me feeling more fatigued than usual and foggy-headed (obviously).
I also said goodbye to my trusty companions of 16 months, Banderol and Samento, and added a more potent herbal formula, called A-L Complex, by Byron White. With an increase in joint pain, muscle spasms and a flare up of Interstitial Cystitis (an inflammatory bladder condition that I have had for 10 years), just one drop of this formula makes me feel like a car ran over me!
One measly drop!
I always say, “If I must go through this, at least it’s winter so I know I am not missing much.”
With today’s temp at a frigid 12 degrees, I feel sorry for anyone who has to leave the house!
Next week, I am meeting with my local Lyme doctor to discuss some strategies to deal with the increase in pain and fatigue I am experiencing. I hope he has some brilliant ideas for me.
To see my full, updated treatment plan, click here.
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?
