The Guest House

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they're a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.

 

-- Jelaluddin Rumi,
    translation by Coleman Barks

I Wish...

I had an appointment with my Lyme doctor on Monday and, due to severe GI symptoms, we are stopping my treatment pending several test results that can help us figure out what is going on. I am very scared, as the longest I've been able to go without medicine is two weeks, after which all of my symptoms came back tenfold and set me back several months.

I've been in treatment now for over a year, and it is quite upsetting that I cannot go more than my regularly scheduled once a week break off antibiotics without severe consequences. I asked my doctor if this is common and she said a lot of people do make faster progress, so this shows that I'm not making good progress. Can you say discouraging?!

We are waiting on several test results before we can figure out a new plan. I have a follow up appointment on October 10th, and we are going to discuss the next step--most likely starting bicillin shots.

Although I have been on oral antibiotics for over a year, they cannot cross the blood brain barrier (BBB). When you attack the Lyme spirochetes with antibiotics, the spirochetes run for safety--in the case of oral antibiotics, that means the brain.  If I understand correctly--and I sure could be wrong here--my options for crossing the BBB are three: IV antibiotics, bicillin shots and hyperbaric oxygen treatment (HBOT)

Right now, of these three, bicillin shots are my only option. If I did IV antibiotics, I would need to have surgery to install a port in my arm, and the risks of stroke, blood clots, infection, or losing my gallbladder are high. I would need to have full time help taking care of my kids (and myself!).

Having an open port in my arm would also mean that going to the barn to see my horse would be incredibly risky (due to infection). I need my horse. She is my respite; my shelter from the storm. Not being able to see her--quite possibly for several months--would be a crushing blow to my mental well being. However, IV antibiotics are quite effective and since they do cross the BBB and it might be my best shot at remission. At this point,  I am keeping it open as my last option.

Hyperbaric oxygen treatment is also another option for crossing the BBB. However, it costs several thousand dollars, which is not covered by insurance, and that is not feasible for us to swing financially. I would need to go for treatment several times a week and I would need help getting to and from my appointments. Like IV antibiotics, I would also need full time help taking care of my kids (and again, myself!).

So that brings us back to bicillin shots. I honestly can't say that I know much about them, other than the fact that--according to several friends with Lyme disease--they are VERY painful, and it is worth noting that people with Lyme disease have a LOT of pain on a daily basis and do not toss around the word "painful" lightly.

Any treatment that crosses the BBB causes a major Herx reaction (a die off reaction that causes a sudden, massive increase in toxins quicker than the body is able to rid itself of those extra toxins--thus causing a major, extremely painful increase in symptoms, which can last up to several months; the Herx reaction is the key in knowing that the diagnosis of Lyme is correct). With bicillin shots, again, I would need lots of help with myself and my kids.

My husband would likely be the one administering the shots to my butt (how romantic!), and he just informed me yesterday that he looked it up on the internet and read that if you accidentally hit a vein when giving the shot, it can kill you. Seriously, this is my BEST option??!

How did I get here? My head is spinning and I've been thinking more and more about the tick that I found under my armpit in 2001 and how my life ever so slowly and subtly changed forever. Had it been a rapid change, we would have thought without a doubt that that tiny hitchhiker under my armpit was to blame.

Instead, the timeline when everything started going haywire in my body was slow, and my husband and I forgot about the tick until piecing things together 10 years later. The warning signs of tick-borne illness can be slow and subtle, sometimes spanning years and even decades before the body eventually collapses and the oodles of symptoms can no longer be ignored.  

I don't know what's going to happen to me. I don't know if I will ever be better. The Lyme disease may be too far disseminated in my body to ever be fully eradicated. I wish I would have paid more attention to that tick under my armpit. I wish I would have known there was Lyme in my area. I wish I would have known to push for preventative antibiotics at the time. I wish I would have known the facts. I wish....

Heroes

Ryan White (credit)

Ryan White was a poster child for the HIV/AIDS epidemic in the 80s. Ryan, a hemophiliac, became infected with HIV after receiving a contaminated blood transfusion; he was officially diagnosed with HIV in 1984, when he was in his early teens.

Ryan, who was thrust into the spotlight after a very public court battle over his expulsion from school because of his illness, openly discussed the trials and tribulations of his disease. Ryan fought to increase public awareness of the disease and emphasized the great need for research for the growing AIDS epidemic.

In 1989, the movie The Ryan White Story was aired. As a child of the 80s myself, I can clearly remember the impact the movie had on me. I was blown away by the bravery of this young soul, wise beyond his years.

Ryan's story exposed an ugly side of medicine, calling attention to a disease which was being largely ignored by the medical community because it was steeped in ugly politics. Amid bullying and death threats, Ryan White bravely fought to change public perception of HIV/AIDS, a disease that had previously been thought to only affect the gay community.

On several occasions, I have heard certain aspects of the early HIV/AIDS controversy compared with the chronic Lyme disease controversy. Just like with HIV/AIDS, the medical community has closed its eyes on chronic Lyme disease; insurance companies are denying coverage for treatment; doctors are losing their licenses for treating; patients are dying from not being able to get properly diagnosed and treated.

Ryan White was an innocent child caught in the middle of the HIV/AIDS controversy; my friend Juliana King is an innocent woman caught in the middle of the grossly mishandled Lyme disease epidemic. Like Ryan, despite the controversy surrounding her illness, Juliana's passion and spirit inspire all who know her. Her bravery in the face of sickness never ceases to amaze all who learn of her brave battle with Lyme disease.

Just like I was blown away by The Ryan White Story, Juliana's own story is amazing. She has endured more than most of us can imagine (including recently overcoming an excruciatingly painful collapsed lung after having surgery) and she is still smiling!

Lyme disease recently caused Juliana's long, blonde hair hair to start falling out in clumps, so she bravely shaved the rest of it off. Despite seemingly insurmountable obstacles, Juliana always has something positive to say, and her indomitable will and unwavering hope has turned her into one of the Lyme disease community's biggest and most loved heroes.

Ryan White played a pivotal role in changing the way the world looked at the AIDS controversy. My friend Juliana is changing everything you thought you knew about Lyme disease. Ryan and Juliana are heroes. They didn't ask to be sick, but they moved/move mountains anyway. We can learn a lot from these two!

 To learn more about Juliana's story and how you can help:
Hope for Juliana
Juliana's Facebook Support Page

Juliana and her son in better times

To learn more about Lyme disease:
Columbia University Tick-Borne Research Center
 Basic information about Lyme disease

To learn more about Ryan White:
HRSA HIV/AIDS Programs