Gratitude

When I go through a particularly funky patch, especially when I get mired in self-pity, a gratitude list usually helps.  I have so, so much to be grateful for, it’s humbling. Thus, today’s list:

• My parents; their support, love, belief in me; everything they do is out of love and the desire to see me happy & healthy.  I could not ask for more.
• My sisters; they ‘get’ me, support me, accept my foibles, appreciate & remind me of my strengths.  They make me so proud.
• My girlfriend/partner; she is, in my mother’s words, “the best thing that’s happened to [me].”  It’s true.  She sees me as I am, all of me, the good, the bad, the ugly, and she accepts -- embraces, even -- all of it.  She knows how to ground me and how to reach me when I get lost in the labyrinth of my thoughts.  She’s been through hell and back with me.  She is my family.
• Musical theatre!  And the opportunities to experience it!  Last night I saw Avenue Q with my sister and cousin.  I laughed so hard!  I love the way theatre makes me feel, the energy I feel as an audience member, the anticipation I feel for the day I can return to the stage.
• My extended family; they accept me as I am, Lyme Disease & all the bullshit that comes with it.  They offer their support.  They validate my personhood -- I am still a worthy human being, despite the limitations caused by illness, and they never let me forget it.
• My little cousins; there is a uniquely special place in my heart for my little cousins (who aren’t so little anymore!).  Before I knew anything about Lyme Disease, when I thought I was just dealing with severe, intractable depression and anxiety, they were the best medicine.  My mother would bring me to their house and, for a little while, I felt the weight of my pain & sadness lift.  They were brilliant twinkling stars in an otherwise dark period of my life.  My life is much sunnier now, but they remain sources of light and joy.
• My cousin, Cathy; before I knew I was sick with Lyme Disease (& all those fun co-infections & opportunistic infections & sensitivities!), I watched her fall ill with a rare autoimmune disease, called Behçet’s Disease.  Despite her pain and debilitation, she became very active in raising awareness and money for research of this “orphan” disease.  She kept going.  She served as a huge inspiration for me when I was fighting depression; I recall thinking, If Cathy can get up everyday and face life, despite everything being thrown at her, then I have no excuse not to do the same!  From that moment, I resolved to push myself harder, to overcome what life had thrown at me.  Cathy still inspires me with her strength, determination, & fortitude. 
• My friend, Heather; Heather is one of the strongest women I know.  She’s also the reason I was finally diagnosed with Lyme Disease (she recognized my symptoms from her own experience with late-stage Lyme), after years of doctor-hopping and misdiagnosis.  She has the hugest heart of anyone I’ve ever met.  I feel blessed to call her one of my closest friends.
• My friend, Jeanne; We’ve only met in person recently.  I spent 5 days at Jeanne’s house, surrounded by her beautiful family who opened their arms to me, made me feel at home, made me feel loved and understood.  Jeanne has Lyme Disease but, somehow, she still manages to give of herself to others in need.  She is always giving, always looking for new ways to give, to help others who struggle with illness, with lack of support, with anything & everything you can think of.  Jeanne also has the uncanny ability to calm me down with humor & love when I’m catastrophizing and ready to pull out my hair. 
• The ability to write; I read this quote from Lord Byron recently: “If I don’t write to empty my mind, I go mad.”  That is, essentially, why I write; I must write.  I write to purge demons.  I write to figure out how I feel and what I think and what I believe.  I write to understand myself.  I write for catharsis.  I consider writing a runner-up to breathing, for Things I Must Do To Stay Alive.
• Energy drinks; My doctor wouldn’t be thrilled to read this, but energy drinks help keep me sane (along with writing, theatre, loved ones, medication, gratitude lists . . . ).  I do my best to drink organic energy drinks sweetened with Stevia, but, really, Red Bull will do in a pinch. 
• Books; Ask anyone who knows me: I read.  A LOT.  So far, this year, I’ve read 50 books.  I’m currently on numbers 51 & 52 (Swallow the Ocean by Laura M. Flynn & Run by Blake Crouch, respectively).  Next on my list is The Emperor’s Children by Claire Messud. 

My list goes on and on, but I have tickets to see Billy Elliot tonight (!!!) so I’d better get dressed! 

I would be honored if you’d share some of the things for which you’re grateful, in the comments. 

You know you have late-stage Lyme Disease & multiple chemical sensitivities when . . .

1. You’ve had a colonoscopy before your 30th birthday. 
2. You consider going to the ER for chest pain and shortness of breath, but eventually decide it would be a waste of time and money because the last time you went with the same symptoms, all your tests were “normal.” You figure you’re just having a die-off reaction to your medication, so you do what you can to detox.
3. You often pass on going to the ER when struck with symptoms that would have a normal person dialing 911. You’re used to these symptoms and don’t feel like dealing with ER doctors who, more than likely, don’t know a thing about late-stage Lyme Disease. 
4. You’ve had more than one doctor comment on the amount of medication you take, as though you delight in taking handfuls of pills everyday, not to mention the foul-tasting tinctures you take on top of the pills, and the mud-colored drinks you imbibe in an attempt to regain your health.
5. You’re used to having to explain late-stage Lyme Disease and co-infections to new doctors you encounter. In fact, you’ve been asked by more than one medical professional where you received your medical training. 
6. Even your caregivers tire of hearing people tell you that, “You look great! You must be feeling better!” Your mother is ready with a canned response, so you don’t have to waste your breath explaining once again that how you look is not a valid measure of your health.
7. You tell your mother to sit in the waiting room when you know you’ll be undergoing neural therapy at your bi-weekly doctor appointment, because she doesn’t handle needles well and you don’t want to traumatize her by making her watch as the doctor injects procaine into your scalp, your tonsils, your adenoids, your sinuses, your abdomen . . . 
8. As much as you hate the crown of thorns, you know you’ll feel more clearheaded once it’s done, so you subject yourself to the pain of 10-plus scalp injections. 
9. When your doctor tells you to take Vitamin C to bowel tolerance, you clear your schedule for the rest of the day because you’re resigned to the fact that you’ll be spending a good part of it in the bathroom.
10. You’ve come to enjoy getting brain MRIs. You find the pounding of the machine soothing and use the time to take a quick nap. 
11. You can’t help but laugh when, just before sticking you with a needle, a phlebotomist tells you “This might hurt just a little!” After 16 weeks of IM Bicillin injections into your rear end, the discomfort from a needle in your arm doesn’t even register on your pain scale.
12. You’re not really fazed when you feel your spleen twitching. You run it by your friends, who’ve experienced similar twitches, and decide you’ll simply bring it up with your doctor at your next appointment. 
13. Your mother knows that, when you tell her you feel like your brain is too big for your skull, it’s going to be a BAD day and she just tries to make you as comfortable as possible. She doesn’t even bug you about the fact that you drink meal replacement shakes for 2 out of 3 meals; she knows how nauseous you get from these headaches.
14. Though she still refers to your LLMD as a “witch doctor,” your mother has come to believe in the validity and efficacy of energy medicine and all sorts of ‘alternative’ medical techniques she’d have scoffed at only a year ago.  (Your father doesn’t quite ‘get’ what it is that your doctor does, but he respects your choices and has seen the difference in your health since you began seeing the “witch doctor.”)
15. Your family members come to you with their medical questions because they know that even if you don’t have the answer, you’ll find it out or direct them to someone who knows. More often than not, if the question is medication-related, you know the answer. 
16. Your close family and friends know to immediately put you down as a “maybe” for any event that requires an RSVP. They understand that you have good days and bad days, and you won’t know if you can attend a function until you wake up that morning and assess your pain and energy levels.
17. Your parents and sisters take note of restaurants that are Lyme-friendly (i.e., they offer gluten-free dishes, organic meats & veggies, etc.) and excitedly recommend them to you.
18. Your girlfriend researches gluten-free alternatives to meals & deserts you love and cooks/bakes them for you every chance she gets.  (She’s totally a keeper!)
19. When traveling, your parents know to make sure there’s a refrigerator in your hotel room for your probiotics. 
20. Also, when traveling, no one bats an eye when you order 8 large bottles of spring water from room service. You can’t drink tap water (too many impurities and metals), and 8 bottles is usually enough to last you about 24 hours. 
21. Your sisters aren’t too fazed by your face mask anymore when you pull it out in public. 
22. Your mother no longer wears perfume and is learning to clean with natural cleaning products in order to make your environment more friendly for you and healthy in general. 
23. Everyday conversations with friends, more often than not, meander toward the topic of bowel movements (too frequent, too infrequent, consistency, etc.).
24. There is no longer any such thing as TMI (too much information) when talking with friends who also have Lyme.
25. You forget that the dinner table is not the place to bring up the subject of bowel movements. In fact, you forget this quite often because your memory sucks, but eventually your family learns to tune you out. 

Do you have anything to add to the list? Leave it in the comments!

A Timely Auction -- SPREAD THE WORD!

May is Lyme Disease Awareness month and this week my friends and I are holding an online silent auction for our dear friend, Heather, who is currently struggling with a lot, financially and medically. 

Heather has late-stage Lyme Disease, like me. In fact, she is the reason I was finally diagnosed with Lyme Disease; she recognized the symptoms that countless doctors dismissed, and encouraged me to seek the opinion of a Lyme-Literate MD. From the time I was diagnosed, she has offered me her encyclopedic knowledge of the disease, co-infections, treatments, and anything else you can possibly think of that’s related to living with and treating this disease.

I’m extremely fortunate in that I have an extensive, amazing support system of family and friends who make it possible for me to receive the best treatment (thanks, Mom & Dad!), who accept me where I’m at, and who never fail to remind me that I can and will get through this. However, my experience is far from the norm. 

Heather, like many people I know who struggle with this devastating disease, lives on her own, with her two cats, and subsists on small disability checks and the money she made by selling her most prized possession -- her violin. You can read more of Heather’s story here: http://heathersauction.blogspot.com/heathers-story.html

Heather has recently been faced with some especially tough times, necessitating the near-draining of her bank account. As a result, she’s had to stop treatment for Lyme. With this auction, we hope to raise enough money to replenish what she’s lost and get her back on track with treatment. 

Please, take a moment and check out the auction site: http://heathersauction.blogspot.com

There are some really great items up for auction, including jewelry, artwork, items autographed by Kristin Chenoweth (!!), services, and a bunch of other great stuff!

If you guys could forward the link to friends and family, I’d be so grateful. We’re trying to get as many ‘healthy’ people involved as possible, because most people in the Lyme community, especially those who have been working on the auction, are in difficult positions financially due to their own health expenses. 

Again, the link is: http://heathersauction.blogspot.com

Thank you for taking the time to read and forward this blog post and spread the word! 

A New Doctor, A New Approach

After a year and a half of antibiotic treatment, I have come to a decision: NO MORE! (At least, not anytime in the near future.)

Have antibiotics helped?
Yes, undoubtedly.
Have they been effective enough that I believe further treatment with them will have a major positive impact on my health?
No.

And more to the point, I believe there are underlying issues that must be addressed before I can get rid of these infections. To that end, I have enlisted the help of a doctor with a completely holistic approach.

My appointment was two days ago, Wednesday at 2pm. It was scheduled a week in advance. I was nervous about seeing a new doctor. First doctor appointments are always nerve-wracking because they require me to go over my long medical history, which is an unpleasant trip down a very spotty memory lane. Luckily, I had my mother by my side, filling in the gaps in my memory and supplementing my accounts with her own observations. But, let me go back for a second to say that I was especially nervous about this appointment for reasons I did not understand until it was over.

See, this doctor uses a method of assessment called Autonomic Response Testing (ART). It is a kind of biofeedback muscle testing pioneered by Dr. Klinghardt, a leader in the field of Lyme Disease treatment.  While I am no stranger to muscle testing, I have never undergone this particular type of testing, which is more sophisticated and accurate than others. I knew there was a very good chance that this doctor would be able to detect dysfunctions in my body that other doctors had not been able to identify/pinpoint, and while that is exactly the reason I wanted to see a doctor who uses ART, that is also the reason for my elevated anxiety. I was terrified of what I might find out.

But in my case, ignorance is not bliss; it is an underlying current of anxiety that makes me sicker. So despite my fear, I went through with the appointment and found out some interesting factoids about the current state of my health:

• I am chock full of parasites! I even have them in my lungs. I had no idea a person could get LUNG parasites!
• My organs are riddled with mercury. Time for a heavy metal detox!
• I have major digestive issues. My symptoms made that pretty clear, but then the doctor asked me to stick out my tongue and, upon a single glance, said, “Whoa, YES, definite digestive problems."
• Thyroid issues, too!
• I have difficulty eliminating toxins; my liver is particularly overtaxed and angry.

There are more, but these are the major issues right now. I’m not surprised by his findings (except for the lung parasite; that’s just weird), just a bit overwhelmed by confirmation of what I already suspected. Suspecting I have underlying issues that need to be resolved before I can treat Lyme Disease and co-infections is one thing; having my suspicions confirmed in detail is something I need time to digest.

My friends reassure me that knowledge is power, and I know they’re right. Now that I know what’s going on, I can address each problem instead of crossing my fingers and hoping that X treatment, which lasts x many months, will eventually put a dent in the infectious soup living in my blood, tissue, and organs. Sure, treatment will take time and patience, but at least we’re no longer shooting in the dark.

I know that many people are skeptical of alternative medical practices, and they should be. Just as they should be skeptical of any medical practice, including those widely accepted by mainstream medicine. What I like about energy medicine (ART falls into this category) is that, in the hands of a skilled practitioner, it can illuminate root causes of problems, which can then be addressed, instead of simply treating symptoms. I’m also a fan of homeopathy and herbal medicine because, when used correctly, they don’t cause unnecessary damage to the body. They work with the body to strengthen its own ability to fight off infection, instead of against it, killing off both good and bad bacteria. 

Of course, this is simply my opinion and there is no single correct way to regain health. If a certain method of treatment doesn’t sit well with you, trust your gut and go with what feels right. Right now my gut tells me I’m headed in the right direction. I can only hope this is the case and go forward from here.

Antibiotic Moratorium and Working with Blame

I’m taking a doctor-prescribed, much needed break from antibiotics for the next 6 weeks. All I have to say about it is: THANK GOODNESS!

I’ve felt extra toxic lately, so a break should do my body good. Of course, a break from antibiotics does not necessarily mean a break from treatment; I’m taking a bunch of herbal anti-microbials, which are kicking my butt! However, it does feel better to be putting herbs into my body than injecting pharmaceutical-grade antibiotics into my veins everyday. 

Over my 4-month course of IV Bartonella treatment, I experienced a lot of ups and downs. Recently, I found myself with more energy and less brain fog than usual, which was amazing! It came right around the holidays, too, which was convenient. Then, a couple of weeks ago, the crushing fatigue, with which I am so intimately familiar, seemed to return. It was disappointing. I became scared that the progress I thought I’d made was lost. I wondered what I’d done wrong to make the fatigue and, with it, the brain fog return. Luckily, I have a supportive community of friends with Lyme disease who were quick to remind me that:

1) This is normal. Scary? Yes. But normal.

2) It will pass!

3) I am not alone in my experience or my fear.

My friends’ reassurances calmed me enough that I was able to shut off the line of thinking that involved blaming myself for my setback. Self-blame is one of the first reactions I have when something goes wrong. It’s easy to see how blaming myself might have become a habit; for so many years I was told by doctors that either there was nothing wrong with me or I was crazy/depressed/needed to see my psychiatrist ASAP. Their less-than-encouraging reactions placed the blame of my illness (or ‘illness’) squarely on my shoulders, and my shoulders alone. It’s taken time to learn that, when it comes to this illness (or, really, most illnesses), the concept of “blame” is useless. Sure, it’s part of the process of coming to acceptance of unpleasant circumstances, but it’s something to move through. Getting stuck in blame, whether is it self-blame or placing blaming elsewhere, is toxic. Until I let go of blame, I can’t move forward toward health. It’s not an all or nothing proposition though. For me, it’s something I go back to, but each time I do it has less of a hold on me. 

I hope that, if you’re stuck in a rut of blame or anything else, you find your way out and are able to move forward to more vibrant health.