Life as it is

Life can be really hard. I can make a list of all the symptoms that I have and another list of all the challenges that I face or have recently faced. And yet another list of all the challenges my family faces. I can justify us all to be extremely angry and depressed. It would be completely just, but what good would that do?

What good does it do to prove that I am right? The doctors that didn't diagnose me for 16 years were wrong. The people that have hurt my family are wrong. My family members could make better choices to take care of themselves and make their lives smoother.  I am in so much pain and have to force myself to work and pay the bills rather than get government assistance that I likely won't qualify for while we pay way too much money for insurance that doesn't cover much. What good does it do to lament and string a mala of discontent? None.

We all hear the one liners throughout our lives about looking on the bright side, cup half-full, think positive...blah blah blah. But, really, when the shit hits the fan in your life it is the only thing to do. It really doesn't help to justify your misery about all the woes in your life. Trust me...I have tried.

What helps? Well, I think just accepting what is and doing what is to be done to help when there is something that will help. And let go. And forgive. And smile. And laugh. And enjoy as best you can, through the pain and the challenges again and again. It is how it is. I don't know why this is the way it is, but I can't change it. Resistance is futile. I can accept and live fully or resist and be miserable. I think I will choose the former cause' the fruits are a little easier to swallow.

Walls

"Hit the wall, " a violent metaphor that I try not to use. It's common usuage though makes it a perfect example.  I have been watching the Olympic trials lately and have heard the phrase referred to again and again. When the athlete "hits the wall" they must dig deep into their reserves to keep moving forward or succomb to physical collapse. I can really relate to this.

Maybe instead of the oh-so-violent "hitting" I will say "met the wall" instead. Meeting the wall is a common occurence for anyone who is chronically ill. For me, that wall has been too close recently in that I feel as if it is there all the time. I can count the cracks and crevices on the wall and would prefer it to go away. I could push against it, whine and complain. I know it won't change a thing though, cause' it's a wall. It is what is.

The body is part of the greater order of things. Why is it in so much pain and so weak? That is the million dollar question to which there is no answer. When we follow the answer back to the source -- it just is. I can fight it or accept it. Two choices. That doesn't mean give up. Do what needs to be done to help. But, if the wall is there I can meet it and greet it or hit it and fall down. I can dig deep into those inner resources like the athletes do in hopes that I can push forward. This doesn't always work though because in chronic illness the body is so depleted. Sometimes the answer that comes when I dig is, "The account is empty. You are now borrowing on credit."

I think I am learning to manage the walls. Greet them, meet them, accept them more. This doesn't mean I am not tired of them. I am so freaking tired of managing them - the utter exhaustion and fatigue from a myriad of symptoms. But, I can see that "hitting them" or falling to the floor in tears at the sight of yet another wall is just not an option.

Meet and greet with as much of a smile as I can muster....all I can do right now.

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....

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.

Learning to listen

Listening to music is simple. Choosing not to listen when someone is talking and you don't want to hear what they have to say, also simple. But having to listen to your body and know what it is trying to tell you, not simple. The messages seem cryptic and confusing with hidden paths and potholes.

When living with illness, the balance between being functional and completely crashing is so delicate. One is always picking and choosing, weighing all options and trying to discern who is talking. Is it that inner knowing that says to rest or even to get up? Or is it that desire that really wants to be fulfilled but would be detrimental to that ever-so-delicate balance you are trying to maintain?

I gotta say I am getting weary from trying to figure out who is talking. And, unfortunately, the consequences are so high why I don't hear what is really being said. Thankfully, tonight the voice of reason screamed loud enough (multiple times) and somehow I resisted going on a walk (three times) when really I was too tired to do so. Bummer. It was pretty outside, the air smelled nice and I am blessed to not be suffering with allergies. But, I listened. It will be nice tomorrow and hopefully the fatigue will have lessened enough that I can get out and enjoy the beauty.

And tomorrow, yet again, I will need to unclog my ears and listen. Really listen.

Roller coaster

I feel as if I have been tumbled about on a roller coaster ride these last few weeks. Would rather not relive the trials and tribulations. Somehow though I want to capture the essence in a short manner. Doing anything small has never been my forte. I will give it an honest effort.

I am getting stronger. Can't deny that. The treatment (traditional Chinese herbal medicine, Chinese/Japanese traditional treatments, supplements and vitamins, thyroid and immune support medication, saunas, detox baths, walks, massage, counseling, clean diet, rest alternating with activity, etc. etc.) seems to be moving me in the right direction. For that I am very grateful. So many symptoms are calming down. But somehow, the gradual calming of the ever-so-familiar symptoms is making room for new, or even very old symptoms/patterns, to show themselves. I should probably be grateful for this too. I must say opening that gratitude jar is a lot more challenging.

Any illness, any chronic long-term journey towards wellness, really brings forth all that needs healing. This is happening in a MAJOR way in my life. I gotta say it is super tough. Trying to focus on all the positive (go to in a pinch) cliches. Everything happens for a reason. God only gives us what we can handle. Blah blah blah. It is how it is. It is all part of the order. I try to make these sentences drown out the, "Seriously this is happening to me! WHY? I've had enough!" The later battle cry doesn't help anything. Everything that is happening is happening because for some reason it is supposed to. I must listen to the subtle messages and move forward in this time of healing in whatever way necessary. (Remind me of that next I am whining and screaming to make this scary roller coaster ride stop!).

Trust

It has been almost a month since I have written. I feel all jumbled just trying to think about how to summarize. There is no way to succinctly say what has been happening or how I have been feeling. Maybe there is no need to say it either. What is wanting to come out right now is the issue of trust.

We all have trust issues. We are born helpless as babies and have to trust completely that our caregivers will do what is best for us. Sometimes this happens and sometimes it doesn't. As I told my daughter recently when she was complaining about some of her friend's parents, "As parents, we all do our best based on the circumstances and the background. Sometimes our best is pretty shitty, but it is the best we can do at that time." We as children grow up with all this baggage. Then, as adults when we are ready to deal with it, strong enough to handle what is inside the suitcases, it is as if they start unpacking themselves.

Now, toss in chronic or severe illness into the mix and well, there is quite a party to be had. When we are sick physically, mentally and emotionally those reserves to handle the baggage that starts unpacking are greatly reduced or depleted. Life goes on as we struggle to deal with what has seemed so basic. Tasks like getting out of bed, bathing and getting dressed now take more energy than sometimes is there. The day is spent trying to manage the myriad of symptoms and to stay as positive as possible. We have to trust that everything will be okay.

There is the million dollar word. Trust. We must have faith and trust that our bodies will heal. That our friends, family, co-workers, bosses, spiritual community, etc. will understand that we are ill and doing the best we can. We have to trust that someday this will be better. Sometimes we are vulnerable, very vulnerable. Many of us have varying degrees of long-standing trust issues from childhood traumas or abuse. On some level we can't trust our minds or bodies when sick because they are so unpredictable. It gets even more complicated and painful when people around us use this time of vulnerability to break that trust. It is a delicate time. A time to foster trust and faith.

I have been contemplating this a lot lately. I know this is a huge issue for me, and likely for many others. How to really trust when so sick and vulnerable? I can't say I know the answer. What I can say is that I am trying. I am sad that people use this time of vulnerability to purposely break that trust. I guess that is human nature. We are given free will and sometimes, for reasons unknown, people use that free will to go against proper values and what is correct. But life goes on. We keep growing and healing and building/re-building this trust muscle. We do the best we can to trust and have faith that all is and will be well.