Weeding the Patio

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I’m a weeder.  The only weed killer I use: My fingers or the Dawn dish detergent, vinegar and epsom salt concoction; and that only sparingly.  I would rather get down on my hands and knees and just pull those suckers right out.  I find it therapeutic.

 

I also love my patio. It provides four seasons of pleasure because even after a snow fall, we can light the chiminea and sled down the back yard.  With wine.  But springtime — there is work to do.  Leaves and other lingering debris that fell after the last fall sweep are clumped in the corners and weeds are growing up through the spaces between the bricks. A wall holds my potted herb  plants and flowers.  As the herbs go to seed in the end of summer, the wind and birds scatter them. They emerge in the spring through the crevasses by the retaining wall.

Since it was so nice out yesterday, I decided it was patio clean-up day.  I put on my garden gloves, hat and went out to work.  Dill!  Little dill plants sprouted everywhere.  And cilantro.  HMMMM.  Thinking about cooking with them made me smile.  I got on my hands and knees and went to plucking herb seedlings and moss out the cracks of my beloved patio, with Mary and Jane, my two herb BMFs (Best Medical Friends) keeping me company.

About a year ago, I either had a horrific relapse or was reinfected by a tick I never saw.  Shocker, eh? Regardless, it was bad and I had to resume treatment for the fourth or fifth time. I’ve lost count.  Anyway, my LLMD put me on a new experimental protocol.  It was working, so it was hell.  Check off everything on the list you all know by heart.  Leave no patio stone unturned, my friends. The herxheimer spared me NOTHING.  My husband and I  were lounging on the patio one night and I and said, “I can’t take this anymore.  I’m going green.” He didn’t comment.

Back in March, I noticed there were seeds at the bottom of my “medicine” jar. I figured, WTF and threw them in some dirt and plopped them under a grow light. I kept them moist but never got to the part where you check the PH of the soil etc.  They fought. They struggled. I was sure I would loose them.  The day before was their first time out on the patio alone for a full 24 hours. When I stepped out on the patio to weed I saw a few delicate leaves were turning whitish. Mary and Jane look traumatized.  “Oh my god, I’m a horrible grower.” I cursed under my breath.  “I thought they were ready!”  I had no idea , What was I thinking?  They needed serious TLC, so, out came fresh potting soil and a new spacious plastic pot.  I can’t lift anything cool like terra cotta.  Nor can I affoIMG_3115rd it.  But, alas!  I transplanted my little warriors from their starter cups into a patio planter I painted by hand. Once I got my BMFs in their new soil condo, I partook, put on my Beats and went to removing all patio invaders.

I threw diatomaceous earth on the ants — sorry guys.  I pulled each weed carefully as to not leave behind any part of the root, or it will just grow back. I whisked up the little pine needles filling all the cracks.  It felt good to get cleaned up. Although – you know how epic a challenge that can be most of the time. With every tug  I sniffed and played, ‘name that herb’.  There were definitely chives out there.  My I-pod shuffled to  “The Climb” by Miley Cyrus. It was a song I used in a behind-the-scenes video I made in Lake Placid when my daughter won a bronze medal at a regional figure skating competition.  Lyme slammed the door on that chapter of my daughter’s life. When the song finished I switched to the Miley playlist. Every song moved me to a different place and time, and emotion. I was never a huge fan, but it suddenly occurred to me: Having had a daughter,  Miley’s music was the background to my decade of challenges and illness.  So very many–challenges.  Every song had some meaning to my life.  I find myself listening to her often.  Lyme does truly change everything.
Soon I realized the sun was really warming up the day, and being crunched down for so long would not be good.  I stood up ever so carefully and made it to the chair. Passing out was not outside the realm of possibility.  I sat and stared out for a bit.  I think I may have had a little absence seizure while gazing out over the yard surrounded by beautiful trees filled with ticks. That thought jarred me back into reality so I took off my headphones and went inside to escape the heat.  I peered back out through the screen door at yard work yet to be done and shuddered.  It took me five hours to calm down after I pulled a tick off my stomach two days ago.  I couldn’t have a repeat of that scenario.  Feeling depleted, I sat down and started eating salty chips and hydrating away the POTS. BWWAHAHAHA.

Seriously, though.  Using marijuana has helped me tremendously.  The bad days are so much more manageable.  I don’t throw up the medicine, I have an appetite, the anxiety melts away, the pain subsides and my tight muscles unravel from their twisted up knots. I’m able to focus, think and write.  Most importantly, it enables me to enjoy small things and let go of what I used to miss.  The demons turn to daisies and a tiny little bit of chocolate is better than sex.  In my personal experience, it also helps my body eliminate “impurities” during a detox bath.  If you are a lucky Morgellons symptom sufferer like me, you understand what I mean by that.

I hear skeptics already gasping.  How could a mother with a teenage daughter be so, so, irresponsible!  Don’t think I made this decision lightly. When I sat her down to tell her my choice to seek assistance from mother nature, I started with, “Desperate times call for desperate measures.”  Ironically it was the very next morning mid driving lesson when a wave of nausea washed over me.  “Pull over” I said.  A minute later I was outside the car bent over vomiting in the grass along a winding country road.  After I got back in the car I flipped down the vanity mirror to see mascara running down my cheeks and petechia forming under my eyes from the force of the vomiting.  I wiped my cheeks, blew my nose and said, “And this is why I need weed.”

No doubt some people will grimace in disapproval, but I don’t care about being judged anymore. I’ve suffered too much for that.  I just do my Liberty Walk.

Featured Song: Liberty Walk – Miley Cyrus

 

 

Connecting the Dots

The Lyme Disease Science and Policy Forum took place at the Rayburn House Office in Washington DC May 19th.  I attended.  It was awesome and highly disappointing concurrently.  Let me immediately clarify that any disappointment had NOTHING to do with the agenda, speakers, coordination efforts, etc. Many thanks and hats off to Bruce Fries from the Lyme Action Network for all his work.  Many thanks also to all the wonderful presenters.  I couldn’t have been more impressed.

My personal and greatest disappointment was the absence of congressional representatives at the Forum.  There was a lack of “suits” I’ll call them; if you don’t mind.  Evidently, congress thinks a global epidemic with financial consequences and huge amounts of human suffering is not a priority.  There, I said it.

As I sat around looking at a sea of bright green clothing,  I reflected on the senate representative meetings I participated in early that day. I doubt that the Chronic Lyme Disease agenda was ever even a small blip on their legislative radar.  Congressional representatives didn’t attend the forum, because most did not know the gravity of the situation before our “chats”.  However we do have a global epidemic and I think we got their attention.

During meetings with congressional staff, several of us representing the Lyme community shared brief personal stories as a prelude to Bruce’s presentation of facts. What facts?  Too many to explain here, but in a nutshell: Facts about how the CDC, NIH and lack of Gov’t Agency oversight have been at the core of the epidemic mis-management.  Following the big “reveals”, we transitioned into requests for a portion of the 1.1 billion dollars the Whitehouse earmarked for the Zika virus and more effective congressional oversight of the the CDC.  We pleaded the case for money to fund research for an accurate diagnostic and effective therapeutic.  We shared the numbers…. Each meeting was a half hour.  It is impossible to explain this crisis in anything less than a full day seminar– or five, but we did the best we were able.  I think the looks on our faces probably said the most though.  While we were all composed, well dressed and coiffed and at our Lyme best, most of us were in the same unmistakable place…

“I’m expending mega watts of energy to get through this day because it is of dire import. But when I wake up tomorrow and three more days after that, I will be paying dearly for the effort.”

You can’t hide suffering in anyones’ eyes.  I met so many amazing people at this meeting.  We share a common journey and fiery spirit that enables us to endure such horror and still find a way to fight like warriors to make it stop happening to our children. The rate of suicide is evidence of what our future will be if we don’t start addressing both the physical and mental illness epidemic that is created by the late stage lyme infection rate that is rising like a weed out of the ground in spring (or a viagra user – snort.)

As the Forum progressed I was internally assessing the value of this new website and crowd funding effort.  (“Our Lyme Nation” and United We Heal) Dr. Ronald Stram, Center for Integrative  Medicine, was wrapping up and spoke the truest words.  I’m paraphrasing, but the gist of it was, “We as people are going to have to address this at a grass roots level.” To me that sounded like perhaps the “Our Lyme Nation” movement is on the right track.  And it is a movement.

Aside from getting our unified voices heard, getting an accurate diagnostic to market, and funding an critical charity for continued research and human aide, we are creating a paradigm shift.  Our grass roots effort will prove that united people have the power to solve real problems without intervention of governments or reliance on venture capital.

I should point out that there were two presentations from Lyme diagnostic firms at the Forum.  We heard two great speakers from  Translational Genomics Research Institute and Ceres Nanosciences.  They are making wonderful  progress toward a diagnostic.  However, that should not preclude getting funding to all entities that can deliver on the accurate diagnostic mission.

This is where United We Heal comes in.  Flourish Partners is a consultant firm with brilliant scientists that work outside the US.  They are not a life-science mega-firm with unlimited funding.  What they do have is groundbreaking science not currently being attempted by anyone else and they are confident they will be able to bring an accurate diagnostic to the marketplace within 12- 18 months – provided they obtain needed funding.   The best part, is the once they are successful,  profits will fund a charity for research and human aide.  Think of the good that can be done.  Just because they are outside the US doesn’t mean that we can’t fund their efforts.  There is too much at risk NOT to.

“Unite We Heal” & “Together We Flourish” This is the Lyme Revolution.

Listen to CEO of Flourish Partners, Helen on. Lyme Ninja Radio – With Helen…

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Pictured left to right: Allie Cashel, Dave Conner, Linda Osborn and Raven Liberty.