I don't wanna

I think it is appropriate to post a bit of a disclaimer. This post isn't going to be sugar coated with humor or some positive message that I am trying to talk myself into. I just can't muster it at the moment. Sure, there is positive in my life, lots of it. For that I am grateful. But really, sometimes I think one just needs to let it out and now is the time for me.

I am so freaking tired of this journey. I am tired of Lyme Disease and whatever co-infections, autoimmune diseases, mold and chemical sensitivities, etc. that go along with it. I am tired of PTSD and it's not-so-pretty manifestations. I don't want to wake up with the symptom of the day, cry in the car before and after home visits at work because I am so tired. I don't want to fake it and make it. I don't want to have infections I can't get rid of or pain that is so familiar that I talk to it when it returns after a brief exodus. I don't want to worry about nutrition and what I should or shouldn't be eating. I don't want to startle so badly that it takes hours to recover and realize that I am safe. I don't want to keep searching for answers or accept the very uncomfortable and unpredictable present. I don't want to miss my 20 year high school reunion. I don't want to nearly pass out from a short walk or bike ride. I don't want to feel this lost and floundering.

I just want off this sorry-go-round.

Okay, deep breath. Time to slow down the pity party.

No matter how much I want off this ride that is my life, I don't get to hop off. Just like everyone has their intense challenges and they have to keep going. I have to keep going. Gosh I want it to be different. I want to feel good and lay on a beach and swim in the ocean and laugh with old friends. Oh, I want to do that. But just like my mama always said, "You don't always get what you want. You are old enough for your wants not to hurt ya." Well darn it.

A glimpse of today

I don't have anything witty or profound to say today. No big revelations or point to this post. Today I am happy and sad at the same time. Really guys, I am tired of being sick. I am tired of trying to live life, stay positive, enjoy and accept what is while being so sick. I am really tired of it.

Today went like this.

Woke up relieved and sad that I had found homes for two of my beloved kitties. Found homes for them because I just can't take care of everything I used to -- have to simplify life a bit. Had very little energy and was late doing my morning prayer ritual. Tried to juggle finishing my morning puja and tending to cat kennel customers (my business) at the same time. Then it was time to "check off the list" before going on a play-hooky-from-work-day-time-date with my husband.

Take meds, check. Scoop dog poop, check. Pick zucchini that I should have picked days ago, check. Find warm clothes, check. Eat something, check. Call customers, check. Want to cry and go back to bed because I am too tired to go on.....ignore. Instead, laugh with my husband, smile, get the car an oil change that is 7,000 miles late and finally head to the coast. Sleep the whole way because it was either that or pass out or cry. Nightmare dream about my daughter and her dramas with school bullies that keep tormenting her in the community. Wake up at the coast. Eat lunch. Walk on the beautiful beach and take a nap in the sun with my sweet, sweet husband. Barely make it up the steps to get to the car because the hips don't want to work. Use the bathroom a million times because the bladder is retaining urine and not emptying. Crawl back into the car and fall back asleep because everything hurts so badly. Wake up as we arrive at home.

No more energy. Check email and Facebook. Text some friends. Try to find a home for sweet, old shit eating neurotic dog. Lay in the bed with a crushing headache watching a lovely movie with my sweet husband. Attempt to get up to cook something and end up in bed before even starting. Sweet husband is steaming the zucchini. Bless him. Try to ignore the fact that I feel so stinking ill and that I am so bloody tired of feeling this way.....

The order

Why do really terrible things happen to really wonderful people? I have been chewing on this thought today in so many contexts. My dear "cyber Lymies" that are going through their own physical pain and tremendous loss at the same time. A dear friend's kids who lost their father way too young. Too many women and men that are assaulted and abused. Children born with tremendous challenges and medical conditions. Wonderful, strong people fighting cancer. Innocent victims shot while watching a movie. And the list goes on..... Including the Lymie tribe that I have gotten to know scattered throughout the world.

How do you make sense of what is happening in our bodies, in our family, in our community and in the world? For me, the words flowed today, when responding to yet another unthinkable story in cyber-land-- the sudden death of youth, and it took me back to a moment in my life that was so profound and truly changed how I looked at the world and the order, the cosmic flow of life.

"There are no words to explain the grief of losing a child and certainly no explanations. "Everything happens for a reason" also doesn't help in such tragic loss. I feel compelled to share this in hopes that it may help just a little. When I was in nursing school I worked at a nursing home on a wing with young children that were all on ventilators, with trachs and needed 24 hour care. That same summer I contracted Lyme disease (1995) and then spent the following Spring doing my internship on a Children's Bone Marrow Transplant/Oncology unit. I saw parents losing their children on a regular basis. It was then when a strong understanding came to me, not based on any religion, but really the only way I could go on doing my job without losing my mind. How could I explain that some 90 year old abusive s.o.b lives to be so old and a young child dies at six having lived such a short painful life? Something came to me one night as I stood in the room of a 9 year old after he had left his body. I could feel the spirit had left and there was just flesh and bones remaining. That night I was comforted by the feeling that there must be some plan, some amount of time or karma or life experience that is to occur in this life and when it is done, then it is time to go. And often in that going there is other karma, life experience that happens to the people around that is needed as well. For me this was the only thought pattern that helped. It soothed the need to find a logical reason, because watching young people become disabled or die just doesn't make sense. After that night I was somehow able to approach my life and my work and my own loss in a different way. I still have the emotions, the feelings, the grief when the situation dictates it (like in tragic loss of a youth), but I take comfort in knowing that there must me some plan that I am just unaware of. I have gone on to work with medically fragile pre-school children that are profoundly ill and die young. Their parents have to cherish every painful moment with their children as they know there may not be many. Again, if I try to find a "reason" for it I will drive myself crazy as will the parents. For me, it is just happens the way it happens. There must be a greater order driving how things are.  For me, that brings a little comfort in absolutely heart breaking times."

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.