Sunday, October 4, 2015

So Very Brave


After 8 years of treatment for Lyme Disease, Bartonella, Babesia, Celiac Disease, MTHFR gene mutation, Multiple Chemical Sensitivity, Chronic Fatigue, and psoriasis, you start to come to a place of conflict.  You want to be normal 100% healthy.  But you realize after fighting with a broken body for so long that you can only get so far.  You get to 70% and say well at least I am this far.  I have worked really hard to get this far.  My Lyme Disease and Babesia no longer give me symptoms and my Celiac Disease is under control.  I still can't have candles in the house or stay in the cleaning section at the store for long.  I am always tired.  Doesn't matter what I do or don't do.  I am tired bottomline.  I don't remember a time when I didn't feel tired at this point.  I have been in pain or sick since age 8 and now at age 37 this whole broken body thing is a job I work at everyday and do my best to keep under wraps so I can live a life.  Or should I say HAVE A LIFE.  I can't help but feel I wasted my hopes.  I was suppose to be better long ago.  And have things happen by now that I always wished would happen like more kids, a career, a savings, etc. I worked so hard to get better for only 70% of a positive result.  I can't even begin to explain how heart breaking that is.  Not to mention all the dreams I had that are completely gone and wiped from the "possibly" list.  I am starting all over again at 37.  How the hell do you do that after so much effort was wasted on a still broken body?  Who in their right mind would work with 150% effert for a 70% result.  No body in their right mind would do that.  But that's the truth when you have late stage Lyme Disease.  When you catch it too late.  It leaves damage that no one can fix.  I can't get back the last 8 years of my life.  I want a freaking do over some days.  I have friends that talk about things they've done with their families, friends and kids in the past 10 years.  I have no idea what the hell they are talking about.  I've been on survival mode.  I wasn't living.  I wasn't grounded in life, my skin, my community.  How do you explain that to someone?  Sorry I can't relate, my life's been dedicated to getting my butt off the couch and praying I would at least make it to the door.  The loss of Lyme Disease is a depth of pain most patients can't express in words because its beyond mere words.  It permeates at the very depths of our personalities, how to act with others, how we approach the world, how we see ourselves and others, how to sense someones pain before they even mention a word, how we have depths of compassion that some may not even fathom, we've been down roads others would of fallen off by now.  Lyme Disease is truly heart breaking and to say its not would be a lie.  I have people ask me have I done this or that and all I can say NOPE.  Its so awkward.  Can you imagine literally not remembering your own personal experiences?  And when you do remember something its always centered around how sick you were.  Talk about isolating.  This is why Lyme Patients understand each other in depths and ways I cannot even explain.  I feel like I can rest when I am around my fellow warriors.  I hide in plain sight most times with healthy people.  I still have a hard time relating to normal people topics of interest or conversation.  I can be an advocate at the drop of a hat that's easy.  But being a more normal person is just weird.  I've been sick so long.  I don't know how to act semi-healthy.  Its a total mind bender.  I still get anxiety around groups of people, traveling, and large events.  I haven't been able to practice my normal people skills for 8 years.  I am a bit rusty!  And when you start to get comfortable with this new skin you are in and realize you can push it a bit, do things you haven't done in a while in the back of your mind your wondering when will I crash next.  That feeling never goes away.  Its like PTSD for the Lyme Patient.  I've heard several other's talk about this.  I also never really was healthy before Lyme Disease.  I've always had some level of pain and illness.  So I've felt that I never really had a chance to do normal people things and get a handle on it.  And I'm an introvert.  So I trust very few people with my fullest self.  I'm always waiting for a friendship to sour or end.  I've had too many people stop calling or leave.  I have tried to work on this but my health doesn't make it easy.  And when you feel sick you don't have any energy to deal with people on any level.  You doing everything you can to conserve what energy you have left to survive each day.  Chronic Illness/Invisible Illness is complicated and to say you understand would be not even cover what I have been through or what I feel.  Probably the most precious people to me just listen and ask questions with no judgement.  The listener's of this world, like me, always find a Listener rare.  We need more of those people in this world.  We forget in the rush of life that we are all messed up and doing our best to get through.  Just some of us fight harder in different areas.  I have no problem listening to someones story.  Its unique to them.  And I find their journey has highs and lows that shows their beauty.  I think we all feel broken on some level.  I guess this advocate just gets tired too.  And needs a place to rest.  I just wish that all the vision I had for myself in my 20s would come back again.  I have no more dreams or wishes or visions.  I don't dare.  I'm always waiting for Lyme Disease to get in the way.  We are daredevils each day.  Accomplishing simple tasks with creativity hoping we can pull it off without a big mess in the end.  Who would of thought that getting up and getting dressed would be daring.  It is when you have no clue how your day with go with an unpredictable illness.  Its brave to try to get up and live.  So very Brave.


Thursday, April 23, 2015

Starting Over

Its been a while since I've written a blog post.  I guess its because I haven't known how to put into words what its like not being as sick anymore.  I still have down days and flare days but I'm able to be apart of life at this point for about 3-4 days then I need to rest.  Its like you have to change the way you view yourself all over again.  I think I find myself in the middle of a rebirth and I just wasn't sure what to think of it.  I don't see myself as a sick person or broken and I'm not waiting for the other shoe to drop all the time.  I guess I'm finding my stride as a parent, a wife, a daughter, a homeschooler, an advocate, as a photographer.  I had an acupuncturist ask me once if I could take all the time I am putting into getting better and put it into anything else what would my life look like.  I honestly had no answer to him.  I couldn't imagine a day without pain or without feeling so horrid that my hope was drained out of me.  I think now I could start to answer his question.  I still the fatigue, nerve pain off and on, Celiac for life, skin problems and allergies.  But I've found my ways of coping.  And my husband and I and son we've found our own unique family groove where up keep of the house, groceries, etc. are tackled together.  And if I'm toast they step up and help.  My son is old enough for some basic chores and we've found our own groove with homeschooling.  If you had asked me two years ago how I was doing I would be angry, screaming in my head, crying and upset and feeling so burnt out.  Now I'm embarking on helping to setup a non-profit which blows my mind and I am embracing it.  I see myself as an advocate and I am getting a chance to see myself in life and work on liking honestly what I see.  It truly is a rebirth.  Nothing is perfect and I still have days I want to hide from people and just be in a place that's quiet.  My photography is my voice and get away.  
I am enjoying experimenting with shadow and light and reflections to say what I am thinking.  I hope to be able to join an artists collective in the future.  For so long I've wanted more than just being the sick person who is a mom.  As an individual I have felt like I'm suffocating unable to do somethings that were just me.  When I'm flaring and super sick I am unable to communicate or participate in life.  I am in survival mode which in my opinion is not living at all.  Its like being in a really bad movie that's on pause.  You are living minute to minute, hour to hour, day to day.  Its radically different to not feel like your stuck in that pattern anymore.  Its like Santa dropped by and gave me some extra spoons for christmas lol.  I'm a spoonie and I am grateful that I am finding pockets of energy to do the things I love but also things I could only dream of.  To see yourself as useful after years of feeling like a couch potato is again radical thinking.  Its a paradigm shift.  I think the only concern I have now is getting bit by a tick again and becoming reinfected or relapsing to where I used to be only years ago.  I still have Bartonella co-infection I'm working on and when I increased my Cat's Claw liquid tincture I am aware that for a few days I need to give myself extra rest as it goes to work.  Its odd that I can now set aside time in a sense to be down and out instead of not knowing day to day how horrible I was going to feel.  And if I do have a surprise day of feeling crappy I can easily roll with it and find a way to readjust.  I have found better and more effective ways to cope with an illness that likes to try and out smart me.  And now that my son is older, I can drop him off at his activities like theater and get a few hours break by myself.  We also are starting to find some financial freedom.  This is the first year I don't feel like we are living paycheck to paycheck which is also radically different and my medical costs out of pocket are less.  Now that my son and I are on a similar diet we've also found ways to make bigger batches of gluten and dairy free foods that help stretch our food budget.  
I am also finding those friends that know my quirks or when I have brain fog lol, and don't care.  I can hang out and not feel a pressure to fit in and look normal.  Now I just don't care if I stand out.  I am not like everyone else.  I will probably have some level of chronic illness the rest of my life.  But that's doesn't mean it has to stop me from living my life.  I've forgotten my friends name, had to wear sunglasses on a cloudy day in a coffee shop, or asked to meet up at a quiet spot.  A true friend rolls with you no matter how weird you are lol.  We are all strangely beautiful in our own way.  I'm becoming comfortable with this Angele.  I kinda like her :)

Thursday, February 12, 2015

By Now

photograph by Angele Rice at Two Lights State Park Maine

By now I was suppose to be a mom of 3 kids,
by now I was suppose to be healthy,
by now I was suppose to be able to move mountains.

My dark encased eyes,
shaking hands,
and foggy brained moments
are all I have left
 of the dreams I once had

By now I was suppose to have a masters degree
by now I was suppose to have a second car
by now I was suppose to have a career

Everyday is guess
Can I get out of bed?
Where did I put my car keys?
I have no energy at all
I can' t focus anymore

By now I was suppose to have lots of friends
by now I was suppose to be able to travel long distances
by now I was suppose to be able to try anything physical I wanted to

When did my life become an odd session of compromises
If I do this, how horrible will I feel later
If I take this herbal/medicine how horrible will I feel until I start to feel better
If I go do something I enjoy, I pay
If I take my medicine, I pay
If I don't take my medicine, I pay
when can I get off this merry go round

When can I stop wondering when the other shoe will fall everyday
when do I get my life back
what is normal

By now I was suppose to plan my day around my interests, not my body
by now I was suppose to learn to play guitar not ration my precious energy
by now I was suppose do something worth meaning because just breathing is not enough anymore

when does this end?

Photography by Angele Rice at Two Lights State Park Maine

Sunday, January 18, 2015

The Treatment Go Round

The Treatment Go Round is nothing new to me after 6 full years.  As I go into year number 7 I find myself becoming resistant to trying anything new for the treatment of my Bartonella.  I've tried at least 4 different protocols for it.  I can't seem to get past this wall and off any heavy treatment I'm around 70% better.  I guess we all hold out hope that we will make it to 100% or as close to normal as we can get.  Problem is I'm sick and tired of being a guinea pig and feeling like I'm a walking experiment.  So I guess you could say I've been on mini-vacation from treatment.

I'm trying to move forward in my life the best I can.  I'm starting to work part time online and the learning curve is catching up with me.  I guess that's what you get for learning from experience.  I'm self taught.  I feel like a jumbled up mess.  I need to move forward in my health, personal life, and career.  I have to brave a whole new chapter without any knowledge or wisdom to guide me along my new path.  I have to fake it til I make I suppose.  I know life is a learning process.  And I am daily student.  But somedays I wish somethings I just knew.  

Why can't at least a few things in this life of mine come easy instead of this heavy, drudging work.  Just once I want to say well that way easy!  I feel like in the world of Lyme Disease those words just don't exist.  Its a constant battle.  And I'm doing my best not to the let the stress and constraints of this body wear me out and wear me down.  But that's easily said than done.  When I get to a place that I think most things in my life might be stable something always comes loose and that's my health.

I think that's why I haven't tried to work that much.  I've done more volunteering in case I dropped the ball, forget what I did, or just too sick to do anything.  Now I fear that if any of those things happen I will be letting people down more than ever before and I don't have time for that.  Its amazing how hard we push ourselves to the point of breaking not realizing maturity is more about how well we pace ourselves within the constraints we are given and do it well.  Its about communicating where we are, what we can do and what we cannot do and taking responsibility for it.  Its speaking for all parts of ourselves.  Being our own best advocate.  Well I guess this advocate needs to take a chill pill.  

I haven't written on my blog in so long because I haven't been able to express what I think and feel and experience.  I feel like I'm so in the thick of things that I just survive.  Sometimes that's all I can do.  Is hold on.  I only pushed my body for 4 days straight and it has taken 3 days of nothing just to feel like I can get back to everything again.  Who in their right mind would sign up for such a crazy deal.  Who would want a Chronic Illness that forces them to take a child's pace.  Who would want to worry everyday that something horrible is gonna happen if they just let go and enjoy life and live it fully.  That's what its like living in this body.  I'm always always always waiting for the other shoe to fall.  For a new diagnosis of something wrong with me.  Nightmares that I have cancer or die.  Or I end up loosing it all and falling apart forever.  

I guess that's the torturous part of this illness.  You always dread the next day because you honestly don't know what it will bring and your not sure you can handle it.  No one can promise you that the nightmare is over.  No one.  I know so many people who loose hope being sick for so long.  So I know these are all normal feelings to have.  Just because they are normal doesn't mean they loose their power to hurt.  They need a voice.  I guess that's why I'm blogging today.  To remind myself that all my parts deserve to be heard and have a valid voice and request.  To Be Still.  And that the world isn't falling apart yet.  To breathe.  That sometimes existing has its power and place.  That value isn't based upon makeup and a fresh dewy complexion, or correctly spelled words, or cool clothes, or perfect health.  Value is simply being yourself and existing.  Even that little bit has an affect upon the world.