Sunday, June 24, 2012

Pain does not equal suffering

So much swirling in the head that "should" be documented. The successful fundraising event, the outreach, the Lyme disease awareness raising, etc. etc. But, due to the nature of this disease the thoughts are not coming together. The head pain has taken center stage again along with it's companions -- gaggy retchy, joint and back pain and stomach pain. They seem to be doing all the talking.

The good news is I did muster up the energy to have a talk with all these characters. I laid down the rules. They seem to not be listening to the "do not enter signs" posted everywhere, but they must listen to this sign. NO AMOUNT OF PAIN IS GOING TO CAUSE ME SUFFERING ANYMORE!  I can enjoy my life while in pain until it is not there anymore. If that means spending a lot of time "not being productive," then so be it. Maybe the main bit of productivity for me these days is to stay relatively cheerful and not let all these "pains" get me down. Having a headache for 15 months is something, by some twisted logic, I have learned to live with. But, when the pain is so bad that I can't stop retching or open my eyes or even move without tears....well, then is hard to stay cheerful. Somehow yesterday and today I did it. I managed to even leave the house and do things (for a short time) that I wanted to do. This included going to the Olympic Trials and seeing Asthon Eaton (who broke the world record in the Decathlon yesterday) up close and personal! Afterwards, I laid in bed and passed out (literally) from the pain, but it was worth it. It's all about choices.

I keep hearing from doctors, "You've had this for 17 years so there is a lot of neurological damage. Headaches are one of the hardest Lyme symptoms to get rid of. I will do my best but it will take time." Well, I think that means I have only one choice left. I must learn to live my life with ridiculous amounts of pain. (I've had pain for 17 years but NOTHING like this RAGING head pain). I think this last 15 months I have been so focused on it going away and staying away, that every time it returns I allow the emotional suffering and disappointment to enter with it. And along with the suffering comes this old feeling of being attacked and out of control. Hence the spiral downward when the pain increases or becomes severe without any warning.

Enough of that crap! I can still pray to heal completely and believe it will happen WHILE accepting that for now, I need to learn to live in pain. It's temporary. When it's not there that is fantastic. When it is there, oh well. I managed to do this for two days in a row and for that I am grateful. If I wake up and there is no pain...excellent! And if not...well, there is always day three of learning to live happy and in pain....

Sunday, June 3, 2012

Coming out: Lyme Benefit on Sunday, June 10th at 6:30 at COZMIC

Coming out. In this culture the phrase "coming out" typically means declaring your sexuality to your family and community. I just realized that this phrase has it's own meaning when talking about illness. We all know the stages of acceptance, the grieving process....blah blah blah. I think I want to add the "coming out" stage.

I thought my "coming out" was when I became visibly very ill in the Spring 2011 and had to disclose to my community how ill I was. This led to so much support in many ways that I am eternally grateful for. It also took away my mask of anonymity. As hard as this is (and trust me it is hard), it has opened doors of healing and support I never thought possible.

One such door is about to be blown off the hinges and the next phase of "coming out" will commence. My sweet friend/co-worker Wendy has organized an amazing benefit night for me next Sunday. For me? Really? These thoughts swirl through the head at varying pitches of amazement. Honestly, it couldn't come at a better time on many levels.

The bank account (once again) is bleeding heavily. Somehow though, through this whole process, when one door closes another opens. When I run out of money and have no idea how I will pay the medical bills, then money appears. I am learning, again and again, that I have to trust the universe to provide what is needed.

What is also needed right now is for me to feel encouraged and hopeful. I had been feeling a little better since going to Portland every two weeks to see the traditional Chinese medicine doctor. I started to attach to this "feeling stronger," which was why when the Lyme flared (again) in the last few weeks I felt as if someone had punched me and I couldn't catch my breath. Discouraged is the understatement of the year. It is so easy with this disease to get discouraged. Healing isn't remotely linear or gradual and everything is completely unpredictable. But, somehow I am still moving forward through the ridiculous amount of head and body pain and the myriad of symptoms that just can't seem to get the memo to get lost.
 
My motivation for writing this post was to get my thoughts together before the benefit next week. I want to somehow be able to speak with some degree of knowledge and coherency about a disease and treatment that is ridiculously complicated and convoluted. Somehow my brain, that is ravaged by this f*&^*^ing disease, needs to put together coherent thoughts that make sense and can convey what I have been through and impart resources to others that are seeking diagnosis/treatment. Oh, this is where I pray to the higher power and ask the universe to provide. Just a minute. Okay....did that (for the hundredth time). It better work this time because on Wednesday I really "come out." Wendy scheduled an interview at the local public radio station (KLCC, 89.7) at 1:00. Holy crap! (breathing, breathing, breathing).

Hopefully the words that should be articulately conveyed will enter into the head. I do want the fundraiser to be successful, because honestly I do really need help with the medical expenses. But, what I want more than anything is to help raise awareness about Lyme Disease. I have been sick for 17 years. This disease has engulfed my body and my life. It didn't have to. I could have been treated properly when I was originally diagnosed in the Spring of 1995. I wasn't treated properly because I didn't know what to fight for. I didn't know that the doctors were not informed or were mis-informed. I didn't know that the quality of my life was at stake. I didn't know the amount of havoc this disease would cause to me and my family. If I had a clue, a window into the future, I would have fought harder to find treatment. But, I didn't know.

That is what this "coming out" is really about now. If by talking on the radio, standing in front of hundreds of people on Sunday at COZMIC, and taking off all my masks that remain.....if that helps one person to not suffer from Lyme disease that it is worth it. It is so worth it.




Here are links to more information about Lyme Disease:

For general information about Lyme Disease, here are some links:
http://www.ilads.org/
http://www.lymediseaseassociation.org/ (will have their brochures
available at the benefit)
http://underourskin.com/ (fantastic documentary. Available on Netflix
and other online sources. We will show the trailer for this movie at the
benefit).


The press release that I received from Wendy. Feel free to copy and send to your friends/community.

On Sunday, June 10th beginning at 6:30 pm at COZMIC there will be
a benefit show for Faith LaCross.  Faith contracted Lyme Disease 17
years ago, but was just diagnosed one year ago and began treatment.
Most of her medical
expenses are not covered by insurance.

Entertainment at the event will include the Eugene Bhangra Dance
Group, acoustic guitar by Will Brown (all original songs) and a guitar
and vocal set by Julia Damon.  All are local Eugene performers.

In addition to musical entertainment, the show will include a short
presentation about Lyme Disease (yes, you can contract it on the west
coast!) as well as a raffle of local original art pieces and various
healing arts gift certificate baskets.  Raffle tickets are $2 each or 6
for $10.

Tickets for the show are $8-$20, with a family price of $15 and are
sold at the door.

We hope to see YOU on June 10th, beginning at 6:30 p.m. AT COZMIC, 199
WEST 8TH AVENUE.