Tuesday, December 18, 2012

Loved Quotes

 Photo: Great advice ~



"Stop Chasing Ghosts, they have nothing left to give." Angele Rice

Photo: Share and Tag if you can relate
via www.sayingspage.com

 Photo: Share and Tag if you can relate
via www.sayingspage.com

My words
I can only be me,
and that's all I will ever be,
I can only be me,
and that's all I will ever be

Photo: We are deeply saddened by the incident at Sandy Hook Elementary School in Connecticut.  Our thoughts are with everyone affected by this tragedy.

 “When you get to the end of all the light you know and it's time to step into the darkness of the unknown, faith is knowing that one of two things shall happen: either you will be given something solid to stand on, or you will be taught how to fly.”
― Edward Teller

 “Whatever you are physically...male or female, strong or weak, ill or healthy--all those things matter less than what your heart contains. If you have the soul of a warrior, you are a warrior. All those other things, they are the glass that contains the lamp, but you are the light inside.”
― Cassandra Clare, Clockwork Angel

Bits and Pieces

 A variety of my thoughts that I chose to write down and keep.

Burn your boxes
I don't fit in them

Burn your boxes
And watch the flames go to heaven
See the sparks you are creatin'

"You lost what you cannot hold."~Breathe

You told me I was looking for attention,
I was asking for your hands,
I was asking for your help.

You told me I was looking for too much,
I was asking for your arms,
To hold me.

You told me I was looking for someone else,
I was asking for your heart,
It beats like no one else.

You told me I was asking for too much,
I was only asking for your kindness,
I asked too much.
 Vulnerability invites everyone to participate in the conversation.

Bartonella and Me

When I was diagnosed 4 years ago I never thought I would of been taken this journey, I thought just take the antibiotics and everything would be done and over with.  I also thought Lyme Disease was the illness that would never get better.  I am still in treatment for Bartonella a nasty bacterial infection ticks also carry.  It makes my hands, feet and face feel like they are red hot on fire for no reason.  I don't sleep well and I get cranky more than I would like from feeling so darn uncomfortable.  I have been off any heavy treatment for a while and now just using herbs to kill this stubborn Bartonella.  Sometimes I wonder if I will ever truly "recover" fully from this Late Stage Lyme and Co-infection's.  I am fortunate that Lyme led me to my Celiac diagnosis and now after close to two years on it I have gained 15lbs and yes that's a really good thing.  I weighed 97lbs for a long time and barely had any strength to do anything.  I can now walk a few miles a week outside treatment and homeschool my 7 year old son.  I am grateful for my progress so far but this Bart, feeling on fire thing is for the birds!  I just want to get out of my own skin and there is just no relief.  The Byron White's Abart formula must be doing something because my skin is improving and the bacteria seems to be talking back.  Its like an internal argument between Bartonella and the news herbs.  Well yes the Bart. doesn't want to vacate the premises.  On top of this my chemical allergies are really bad and my immune response is kicking into high gear.  So its like having allergies, an auto-immune disorder with a side of nasty bacteria.  Needless to say I am a hot mess, I am not even into the holiday spirit really.  By 5pm I am fatigued and I find myself falling asleep in the rocking chair near our warm wood stove.  Not a good thing when you have a busy son who likes to torture cats for a living :) LOL  I am glad I have one layer to work on right now but I'd rather being somewhat normal and walk a few miles a week and keep up instead of feeling like a slug or a bump on a log.  That's the trick with this illness, you are on a constant up and down.  I keep getting upper jaw pain for some reason on this treatment.  It feels swollen for no reason or its like a nerve pain.  I really don't like that part.  Now if I could sleep through the night that would be great!  Not to mention finishing Christmas shopping, wrapping, stuffing stockings, I am getting tired thinking of it all.  I can say this year I was able to do something for my Lyme friends and others by sending out 50 home made cards.  It really does the soul good to do for others.  And I do have some wonderful friends in the homeschooling community, Lyme community, and now Twitter.  My body might fall apart but I have friends for the journey and I am very lucky to have that.  I just wish this whole treatment, supplements, pills, shots, blood draws could be done.  I think its normal to want to have better stable health.  Its a God given right for as I am concerned.  It breaks my heart that more and more people I meet have chronic illness and their doctors don't know why.  It drives me crazy.  I wouldn't wish these past 4 years on anyone.  I just hope this current herbal medicine kicks this Bartonella in the teeth and I am able to move forward towards full recovery if that is possible.

Saturday, December 8, 2012

Moving, Going

Moving Forward,
Going Down,
Moving On,
Going Back,

Moving hurt,
Going to heal,
Moving pain,
Going to rest,

Moving Forward,
Going Down,
Moving On,
Going Back,

Moving through,
Going around,
Moving up,
Going deeper,

Moving Forward
Going Down,
Moving On,
Going Back,

Moving slowly,
Going fast,
Moving sideways,
Going towards,

Life is in constant motion, I am in constant motion, my health is in constant motion, the earth is in constant motion, moving, going, ever changing,

The only constant is Me

Tuesday, December 4, 2012

Make Pretend

Sometimes I just want to detach from all of my health issues and make pretend they don't exist for a while.  I just want a moment's escape until something rips me back down to reality.  I am trying right now to homeschool my 7 year old son, keep my house somewhat clean, and magically find a way to take care of myself too.  No matter how much I try to head off the fatigue right now it still finds me.  I took a nap yesterday and like someone tapped a switch by 5pm I could barely keep my eyes open.  I am wondering what is going on this time.  I need to go see my Naturopathic Doctor but still trying to get into a good schedual my son and I both can handle.  And my ND is over an hour away which puts a crimp in my plans to just go see him whenever.  My sons school work needs to get done.  So I think I will need to move some things around and get down there to see him.  Sometimes I'd rather not go to see my ND at all so I don't have to go through the solving problem loop again.  It always starts with how are you doing?  To a long list of symptoms.  Then its okay here are the blood tests we need to do, here is the list of things I want you to take, here is where you can order them, this is the cost.  Any questions?  Then its time to have a heart attack figuring out how I can pay for the new herbs etc. and pay my regular bills and still have gas in my car.  So no I'd rather not go through that whole loop right now.  I'd rather make pretend at this point.  I get it that ignorance isn't really bliss.  Its just a delay of the inevitable.   I am hoping that a simple tweak in my daily regimen like actually taking my supplements again might help.  I've been on strike for a couple of weeks and I think its catching up to me.  Time to get back on the horse and take care of myself.  I just know that the pills and I will need to be friends for a lifetime so not thrilled about taking them again. I wish I could curl up like my cat Bayer in the picture above and rest in sweet bliss with no cares in the world.  But this last week was bad and my headaches, body twitches came back so I realize the Bartonella is back too.  So I am going on the Byron Whites Abart to kill it.  I don't know how sick I will get before I get better but as I walk into this road I am grateful for the friends and family that are supporting me as I go.  I just wish sometimes this battle would end.  Its not easy being sick constantly all over again.  Just glad I'm not alone and I know I am not the first to feel this way.  So I am sure in the next few weeks you will hear me say how I hate being sick but my photo's, poetry and gratitude moments I will be rereading and reminding myself another break in the my health will come again in time.  I am holding on for dear life but this time I am ready for the battle ahead. 

Seeing the Blessings in the Darkness

For as long as I can remember I've been in pain.  Nerve pain, headaches, sinusitis, asthma, muscle pain, back pain, overwhelmed by light, not as strong as peers, and just not able to keep up.  I've always hated my body because of this and it has taken me a long time to accept myself the way I am.  I admit its not an easy road and I wish I didn't have to go through all those valley's.  Now I have somewhat of a pain tolerance and that works in my favor.  I've put the dishes away with a full blown migraine and son calling my name.  I have learned to adapt to this crazy unpredictable body.  Now loving the pain it causes me will never happen but realizing how much this illness has taught me is beyond valuable and has come in handy more than once.  I wrote a list when I first started this blog about 4 years ago.  So I decided it was time to update that list and remind myself of the blessings in my life and lessons I've learned.  I've come a long way and its good to be reminded of your personal growth and increasing physical health.

1.  I can now say I have some endurance physically and mentally.
2.  I have learned more and more what kinds of friends I wanted in my life and how to let go of the ones that just don't help me.
3. My health is not perfect and I may have more treatment in the future but I don't live my life waiting for impending doom.  I live life the best I can to the fullest extent.  And take each day as it comes.
4. I've learned some people can help and some people are so overwhelmed themselves they have nothing left to give.
5. I am trying to make time for my own interests, passions, and hobbies.
6. Marriage is affected by Lyme Disease let no one tell you different.  The impact is real.  Even watching a movie together and cuddling can be the best time ever, playing scrabble, or just laying down and talking.  Never underestimate the small things they add up.
7. Lyme anger/rage is real and I am no exception.  But saying your sorry matters to those you love and hurt with your words and actions.  So its worth going to bed and trying again.
8. Forgive yourself and others often.
9. If you haven't worked on past hurts or pain to heal old wounds when you are sickest all that crap comes back. So be prepared!
10. If you need anti-depressants, counseling, or intervention be honest with yourself.  Nothing wrong with taking a helping hand.
11. Be who you are and Lyme does impact that, it can change and warp your personality in a negative way or can help you grow and be a person who can in time pay it forward to those who need the help you've been given.
12.  Be your own best advocate.
13.  Research
14.  Don't settle for any doctor settle for "the" doctor that you feel can work with and they can work with you.  Its a partnership and its a long journey make sure its someone you like for the ride!
15.  Ask other patients who they like as doc's sometimes it can reduce your research time.
16.  Online supports groups and in person groups can be a great resource and help and support but people are people and they can also hold drama so don't make them your world.  See them as a resource and help.
17. Don't under estimate paying it forward, give the help you were given to someone else.  You never know the impact it will have.
18.  I feel a little bit wiser than I was 4 years ago.  I thought there was no hope of getting better.  Now I realize "getting better" wasn't the answer to my illness, it was being willing to be taken on this journey and see what it could teach me.  It is about the journey and not the destination.
19.  I don't yell as much as I used to :)  I am proud of myself about that.
20.  I talk things out instead of running away or getting mad.  Believe it or not it works, really it does.
21.  I am grateful for all the new friends I've made.  There are people out there who get me.  They see beyond the fog brain and tired eyes.  They see me not my illness.  And I see them and not their pain.  Its amazing!
22.  Be open minded about everything!  I never thought I would try acupuncture all those needles but I loved it.
23.  Twitter is a great way to not only make new friends but help others Retweeting does matter and help others.
24.  When you can focus and feel okay take a moment to take care of yourself, then do something nice for someone else.  It feel greats.
25.  Whatever you believe find what works for you and don't let anyone tell you anything different.  I went Unitarian I was Evangelical.  You never know what will happen.
26.  Oh the Jokes forgot about those!  One day I was so sick and had body twitches all over and thought great what the hell is wrong with me now.  My husband looked at me and said what do you have Tourettes now?  He read my mind and I laugh so hard.  I felt horribly sick but he made me laugh.  Priceless.
27.  My son has cuddle with me along my cats love those moments.  They have helped me heal.
28.  Take the help when you need it, I know I hate being needy too, but believe me it can be a blessing to have a few moments alone as a mom especially as a sick one.
29.  My photography as been one of my biggest blessings.  I see the beauty from my house, car, walking, sitting.  NO matter how sick I've been photography has helped me see outside my world and see the good out there.  My icicle photos I took from inside my house and I could barely stand up.  When I looked at the picture later, I smiled.  It was amazing and I felt I was able to transcend my surrounding even though my couch was my perch.  Find that thing that allows you to escape your pain.  Its worth figuring out.
30.  Lastly don't forget your Angels they are out there, no joke I've had strangers tell me how pretty I look when I feel completely horrible, compliment me on what a cute son I have, or say how kind I am when I just yelled at my son.  I am amazed the kindness still left in the world despite all its problems.

So I will keep holding on and I am right there next to you.