Tuesday, December 18, 2012

Loved Quotes


 Photo: Great advice ~


Photo







 


"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.



Friday, November 9, 2012

Paradigm Shift

It wasn't until recently that I realized I've been sick or in pain since age 8. Now at age 35 I am slowly entering into a time of decent health. I keeping thinking should I be doing that? Am I doing too much? It's like my brain is stuck in a different time. I am not used to having a body that can keep up with my passions. I kinda like it but at the same time I don't want to leave my Lyme friends behind. They have been such a great support to me. I still detox quite a lot right now and have a little more Bartonella bugs to kill. Other than the occasional migraine or sleepless night my good days out way my bad now. I feel like I get a redo in my life. To really focus on what I want to do with myself other than homeschooling my son and running a house. I enjoy being an advocate, researching, connecting, grass roots, lady. Now that I look back over the past 4 years of treatment I see the path I've taken and I amazed how far I've come. I am excited to move in a different direction even though its kinda scary to leave the familiar. No one tells you that as you heal you go through even more emotions. Your mind goes through this paradigm shift from survivor by the skin of your teeth, to overcomer. I pray all my friends get to this place of health soon.

Saturday, November 3, 2012

Leave me as I am

Leave me as I am
You never cared worth a damn,
You could never see me as I am,

I am never for pity back washes,
I am not for eyes rolling in your head,

Did you ever need me after all,
You seemed quite fine on your own.

I am right here pleading on the floor,
Do you really need me any more,

Don't ask me for you to stay,
Cause your leaving anyway,

I couldn't love you,
As a ghost,
Mirages fade away.

I'm on my knees begging you please,
Leave my broken pieces on the floor,,
Cause I don't need you any more.
No I won't ask you to stay seeings how
You are leavin anyways.
No I won't turn around to say good bye,
I am done chasing ghosts,
I deserve more.

Wednesday, August 15, 2012

Pushing me Down

I was hoping you would let me give up,
And give in,
I could use a break,
from the battles I'm in.
Hold me on the floor,
Wipe my tears with rags,
And scrape the doors with broken glass,
Tearing my skin are all my short comings,
Pushing me down,
Pushing me down,
Pushing me down...

I was hoping you would let me give up,
And give in,
I could use a break from all the pain I'm in,
Caress my face and lie to me,
Tell me it'll be over soon,
Life is,
Pushing me down,
Pushing me down,
Pushing me down....

I am being crushed down to my limits,
Pushing me down,
pushing me down,
pushing me down....

(modern folk song)


 







Monday, July 16, 2012

Recreation

No one tells you that when you have a chronic illness that the past you buried will find you once again.  All the loss, hurt, pain, and disappointment that you knew was there would one day come up again when you are dealing with a current loss, hurt, pain, and disappointment.  Over the past 4 years of treating Lyme Disease I realize I keep seeing this theme of start and finish, birth and death, denial and acceptance.  I see that my chronic health problems have push old skeletons out of the closet.  I can feel like I am out of my mind tired, try to clean the house, balance the bills, take care of my son, the list can keep going.  In my heart, something starts to build.  After a few months I realize how much of a burden I am towing around with me.  Which of course forces me to look at all the other pieces of luggage I am carrying along like, friendships that have ended, disappointments, abandonment, anger, even rage.  By the time my mind stops whirling I realize all the crap I keep in the corner's of my heart.  Its like my chronic health forces me to clean house all over again and take stock in what I need to work out, deal with, face, or move on.  I feel like every couple of months I am constantly going through these variety of feelings, dealing with them to some degree that I can handle and trying to cope with the answers that I find.  No one can tell you that chronic illness may break your body but can be a chance to heal your soul.  Believe me I never thought I would ever say that.  Looking back I realize all the lessons I have learned.  Some I have had to learn over and over because my current struggles brought up such a deep pain that I have several layers to deal with before I can get to some place of peace.  I have some deep hurts that I think on some level I will always be dealing with and facing from time to time.  Its no wonder when some one says they feel like they are going mental from all the pain and suffering Lyme Disease brings.  They are!  I have experienced it first hand.  Its like one minute you are just surviving and the next you are remembering how someone in your left just abandoned you as a kid.  And for some crazy reason it happens all in the same day or even minute.  Chronic Illness really pushes your limits.  I thought I had a high pain tolerance until I started treating Lyme Disease.  Now I don't dare say it because every time I do I swear my body hears me and honestly I don't want to do that again.  I am just amazed how much our physical bodies can impact our mind, soul and spirit.  There have been times when someone wouldn't believe me that I was sick and thought I was faking it.  Before I knew it I was remembering high school when the cool kids would make fun of me and belittle me.  I think that's the hardest part of being so sick without breaks, that physical turmoil pushes the souls limits, as if all that old crap has to go so we can just barely get through.   All this sickness brings up so much pain that I feel forced to deal with what comes up so I can find some peace.  Sometimes I am able to do so and sometimes I just have to leave it along for awhile and let myself be angry, vent, and let the pain come up and out.  For me its like taking off another layer, slowly getting closer to some inner peace.  Its a pathway to maturity seeing the truth of where we are in life and somehow coping with the facts.  Its not easy to accept the brutal facts of my situation especially on the days when I am sickest.  To be honest with myself that I may never "get better" and certain relationships in my life may not ever be the way I want them to be or meet the needs of my heart.  At times I look at where I am now and where I've been and I am amazed at how much I've changed as a person.  I am not sure I would be the same person today without a chronic illness in my life.  At the same time I wouldn't want to do this all over again either.  Lyme Disease is nasty stuff!  I am glad that I am evolving as a person and I like the person I am becoming.

Tuesday, June 19, 2012

Detoxing the Soul

After a year in remission with this illness, I now have to find a way to come to terms with being back on treatment.  I didn't realize until today how much anger and resentment I have towards this illness being back in my life.  After 4 years, I can handle the pill popping and the bad days that come with herxing and needing to detox my body.  I have found ways to make myself happy like photography and breaks from taking care of my young son.  But how do you really detox the soul from all the hurt, self blame, physical pain, outbursts of anger, out of this world rage that's not you, depression that just seems to take over, and anxiety that someone might see your body out of control.  I feel like I have already dealt with this disease for way to long.  Each day that I am back on treatment seems to make it that much harder to get myself out of bed and into life again.  I wish there was just a way for someone to breath life into me again.  Its like someone knock the hope right out of me.  I am not mad at God which I am surprised at.  And even though help and support is limited in some ways I am not completely alone or uncared for.  I guess I feel Lyme Disease is a constant enemy of mine that doesn't care I was enjoying my freedom from fist full of pills and days on the couch.  Lyme Disease is like an enemy in wait.  I felt like it was following me around like my shadow does.  A part of me even though I was physically feeling better for a time.  Nobody can hand you a booklet saying here is the best way to stay sane during treatment for Lyme Disease.  And by the way when you are physically doing better all the mental stuff will be better too.  Just because my body was in check for a time my mind constantly wondered when it was going to come back.  And then it does come back which stinks all the more because it becomes a self fulfilling prophecy.  That Lyme Disease will always come back, you will never get "better", "heal", "overcome".  I have been in pain or sick most of my life.  I just wonder if God just decided she gets to be the sick one to teach others how to live a life while being sick.  I have no answers on how to do that exactly by the way.  I wish the heck I did.  Why does everyone else seem to have it all then? health, support, family around to help, finances that are okay, multiple kids, fun, etc.  Why did I pick the short end of the stick?  Why is it me?  I don't think anymore that I did anything wrong to cause this.  Why would I?  Who on earth in their right mind would want a disease that even most doctors say doesn't exist and have pain beyond imagination.  No one would want this! No one!  So why does it have to be me all over again, and again and again?  Don't I deserve a break too?!  Maybe in a past life I was really notty?  I don't want to end my life anymore I just want to run away from all the additional life stressor's.  I guess I just want someone to hold me until I feel comfortable enough to cry and ball my head off.  For them to say nothing but hold me even when I want them to let go.   An understanding between us that this just sucks, nothing else.  I haven't been held like that in a while.  I wish we could do that for each other in the online world.  I know we try and in some ways it does translate.  Somedays for me its just not enough.  I miss the hugs that squeezed the dark pain right out of me.  I guess my heart needed some detoxing.  I needed to give myself the permission to say it like it is.  I wish this illness was gone.  What sucks is that it is here all over again.

Saturday, June 16, 2012

Holes

Holes in my shoes,
left from all my traveling,
Holes in my shirt,
from all the work I've done,
Holes in my socks,
from all the sweat I've shed,
Holes in my head,
from all my thinking,
Holes in my heart,
from all of my worry,
Holes in my soul,
from all the pain you put me through.


Saturday, June 9, 2012

New Photos for Sale

I have new photos for sale in my Red Bubble store.  All funds created from this account will allow me to pay for my herbal medications to rid my body of Bartonella.  My new herbal medicines cost between 100-200$ per month out of pocket on top of my Naturopathic doctor visits every 6 weeks and he lives an hour a way.  In the end, it adds up when I am not able to work at all.  I want to make my own money and take care of my meds so this disease will not have such an impact on us financially.  I also want my financial independence back too.  Please help me stand on my own two feet.
Sincerely,
Angele

Thursday, June 7, 2012

My Own Peace of Mind

Love you keep breaking my heart,
Give me room to heal,
Let me fix in my own way,
Give me time to find some peace of mind.

Love you go on like that,
Sound like it will be okay,
Forgiveness you say,
You will show me the way,
Just for today let me find my own peace of mind.

Love you remind me,
You have come through before,
You don't remember the score,
You try to heal hearts in war,
Just for today let me find my own peace of mind.

Love you hurt,
Love you are ripping me apart,
Love you have broken my spirit and soul,
Just for today let me find my own peace of mind.

Love let me feel my pain a while,
let me sit with my demons,
surround me with Angels,
so when I am ready I can love him again.

Saturday, May 26, 2012

I am back on treatment for Bartonella after almost a year of being off treatment.  It is only irony that almost one year later I have to start paying out of pocket for new herbs, go see my ND every 6 weeks, and stop my 2 miles walks.  The fatigue is back and my magic hour is around 5pm.  I start to nod off on the couch trying to keep up with my son and house.  The floors need cleaning and dishes need to be put away but I am at the point I just don't care I am so tired.  My small body twitches are back too and as I realize all the symptoms that have left and returned you would think I would be tearing my hair out.  Instead I am either anxious or depressed, relationships scare me.  I keep wondering if I am saying too much, too little or just not making sense at all.  Too bad face to face conversations don't have backspace buttons to push every time I make a mistake.  I could use a redo.  I keep going back to certain key relationships in my life trying to make peace with the hard truth.  That some relationships will never be what I wish or dreamed they would be.  Its hard to take my head out of the clouds and face reality.  Some people will never change or my reaction to them can.  I am trying to forgive and work within the relationship as best I can.  I guess Lyme Disease has taught me that healing doesn't come over night but in layers.  I guess my heart will heal in a similar manner.  I just wish it would hurry up and be over with.  I look at other families and tight friendships and wish I had the same thing.  The big family that gets together which mine doesn't.  Or the key group of friends from college or high school, I am more of a loner so that didn't happen for me.  I have always been friends with a few key people and that's it.  I am learning to network while homeschooling my son.  For his sake I have had to learn some more people skills.  I am not a natural connector.  I have always been the listener.  Its amazing how an illness can teach you certain lessons that can be used in other situations.  I never though Lyme would make me better.  Believe me not all of this is peaches and cream.  I hate being on new meds that make my monthly budget even tighter.  And I hate it when my son gets lonely on the weekends when my husband works and while his friends are at their family get together's.  Its easy to feel isolated.  I keeping wanting to be by myself more and more.  I have relied on myself as an only child a little too often.  I can get into a mode where I shut off my feelings and bury them down deep.  At the same time, I wonder if people can see the hurt I wear on my face.  I keep thinking of different activities I could plunge myself into and forget about my own craziness for a while.  I still want to go to the local art museum and look through the paintings by myself and enjoy them for a time.  I am so used to my son being with me everywhere I go.  I don't mind it but I think I need to recharge my batteries again.  I am starting to feel tapped out at this point.  I can swallow pills and follow doctors orders.  But my soul needs a break from all of this and I need to relax.  I think tomorrow when my son and husband go to a baseball game I will have some time to myself.  I am looking forward to some silence.

Friday, May 25, 2012

Put Your Cares Away My Friend

Put your cares away my friend,
pick yourself up and speak softly,
whisper sweet regrets,
And confess your dreams to me.

Put your cares away my friend,
let your feet trip,
And on the way up,
let me know how it feels to be free.

Put your cares away my friend,
leave your worries behind,
take off your doubt,
float in the air,
feel the breeze,
count some sheep for me.

Put your cares away my friend,
unfold your heart to me,
see yourself like I do,
treat yourself with kindness like I will,
realize you are too good to be true.

Put your cares away my friend,
look forward and deep,
see the road before you,
dreams await your attention,
salutations of joy will be heard.

Put your cares away my friend,
you tear yourself apart
you try to heal scares,
embrace the grit and jagged edges,
embrace yourself.

Sunday, April 22, 2012

Dysautonomia

I have been dealing with Dyautonomia type symptoms for a couple years now.  I was fortunate to find some herbals that actually help.  I came off them to try to get pregnant.  Now here I am again needing to take them all over again.  The out of pocket cost doesn't scare me, its nothing I haven't dealt with before.  I am just sick and tired of being sick and tired.  I have been off antibiotics (abx) for almost a year and just as I finally recover from a miscarriage by blood pressure, body temp., balance, pulse, and sleeping patterns go whack!  I can't take much more from this disease.  You think you have Lyme disease beat and then there goes something wrong again!  I am even having a hard time focusing on my typing.  Its very frustrating!  I home school my son and my husband works lots of hours.  I feel like someone beat me up again and left.  I was starting to walk 4 miles a week and actually keep up with my busy life.  Now my house and trashed and I just don't care!  I am grateful for all of my Lyme friends and their support.  And I am scared at how many friends we are loosing lately.  I don't want to give up but I feel like crying all the time right now.  I just want a break.  I was doing great now this.  I hate explaining why I need down time again to a new set of people.  They just say, "oh".  I get why but its embarrassing.  We have little family around to help and few friends made.  I drove 3 hours total yesterday to see relatives and I am now exhausted.  I need to get my son out but I am afraid I will run another red light again like I did last night when my symptoms came back.  They seem to come out mostly at night but today they are there to greet me from the moment I woke up.  I need to find a way to make some money part time from home.  My husband can't keep working all these hours.  I feel so bad for him.  I don't think I will ever be the one to work a full time job.  I wish I could help out more.  I just am zapped of any energy today.  The room is spinning.  I can't wait for my herbs that I ordered to come in.  I just wish they were cheaper.  I guess I feel stupid I should of seen this one coming.  I wish I hadn't hoped for the best to have it taken away again.  This week is just not my week.  I am praying for a better attitude soon.

Here is some info.  I found about Lyme and Dysautonomia:
Lyme disease can cause dysautonomia. That erratic dysfunction of the autonomic nervous system (ANS). Involuntary processes that are (supposed to be) regulated by the ANS go haywire.
Heart rate, blood pressure, breathing, all in disarray. Enter such things as mitral valve prolapse, neurocardiogenic syncope, and postural orthostatic tachycardia syndrome (POTS).
Think it's hard to say them? Try living with them.
Connie S. has been living with them for a number of years and she has a few pointers to pass on. Drink plenty of water and use lots of sea salt. This increases your blood volume and keeps the blood pressure and heart rate better bouyed.
Eat small frequent meals. And don't eat sugar or drink caffeine.
"If you suffer from POTS, avoiding standing for prolonged periods is important, but lying down for too long during the day actually exacerbates the problem. If you are bedridden due to Lyme, it is better to sit propped up on the sofa if you suffer from dysautonomia."
http://www.wellsphere.com/lyme-disease-article/help-for-dysautonomia-in-...

http://www.ndrf.org/

Sunday, January 22, 2012

connection

I needed your open arms,
I needed your open chest,
I needed your open heart,
I needed your open soul.

I wanted your attention,
I wanted your affection,
I wanted your protection,
I wanted your connection.

I sought after affairs with love,
I fell in love with love,
I left love because it felt so empty.
If only my needs and wants were met to begin with.

The problem is I need connection,
To feel protection,
to accept affection,
to receive attention.

The problem is your soul was closed,
your heart guarded,
your chest protected,
your arms crossed.

"Little Bit Stronger"


I had company over last night and my friend new I had Lyme Disease really bad in the past. I showed her one of my video's on youtube where I was twitching severely. It was just one year ago that I could barely get around, fatigue, severe body and vocal twitches, bad pain, insomnia, etc. I could go on. I took a minute after seeing that video again and realized how far I have come. But also how all those years of treatment have changed the very core of who I am. I will never be the same person I was four years ago when I was diagnosed with Lyme Disease. My view on life has changed so dramatically. I have stopped pushing people away who offer help instead I try to balance when I need help and when I need to push myself to do it on my own. I am trying to make positive friendships and slowly nurture them instead of being clingy. I no longer ask why me, instead I take the day I am given and make it work to the best of my ability and slowly go forward. I see my needs and acknowledge them more, I am still working on finding positive ways to get them met. Long walks have helped reduce my emotional stress level and its the first time ever really that I see exercise as a tool to help me get through my crazy week. I hope to find more time for music and photography. I understand now why healthy people don't seem to recognized those of us who are chronically ill. Its because we all have our own set of problems and challenges and some people are just more skilled at setting aside their craziness to see into the hurt of others. I am lucky that I have started to find a few of those types of people for myself. I have always been the one to listen to other peoples problems and be their support which is great. But I have needed the same support in return. They are rare jewels to me. I think my recent biggest challenge is going and accepting my miscarriage. I am at a place now where I think I can see myself trying to get pregnant again. I will never forget what happened but I am starting to move forward little by little. One of my favorite songs of recent is by Sarah Evans. In her song, "little bit stronger" she talks about how she woked up, got dressed, and got out the door when she didn't want to and got a "little bit stronger." I think that statement is really how I feel right now with everything that has happened in the past four years. I am slowly repairing day by day, little steps forward, inch by inch. I've heard someone say before some progress is better than none at all. Looking back that statement is so true, when I was so sick out of my mind I hated that statement. I wanted all the stress, pain and torture to be over with already. So when a sick friend says they want to give up, I totally get the depth of their statement. At the same time my prayer is that all my friends can get to a place of stability in their hearts, body, and soul. I am by no means in a "perfect" place. I still have pills to take to maintain my current level of health, and days when I feel trapped in this stage of my life and want so badly to move forward and explore more of what life has to offer. Life is a journey and not a destination. Its learning how to deal with the bad so when the good comes along we know to hold onto it and treasure it. I never thought my health needed to be treasured.

Friday, January 6, 2012

2012


I am turning 34 this year and I have come a long way baby. My Lyme Disease is somewhat under control and my celiac diet has helped me to gain healthy weight. I have started to work out again just walking for now. My son is gonna be 7 this summer and I am enjoying teaching some basic arts and craft classes at our Homeschool Co-op where my son attends some classes one day a week. My view of who I am and where I am going I feel is under going another revolution. I have always wanted to become a counselor after having one more child. My only set back right now is my heart racing off and on for no reason. I keep tabs on my B12 and Magnesium. I hope its not any signs of co-infections still hanging around my system. Lyme Disease is so strange. You can get to a great stretch of decent health then something happens. And you are reminded of the bugs that can still come out to play if you are not careful. I am always waiting for the other shoe to drop. A blood test that comes back positive for Lyme Disease or co-infections. Or an accident like breaking a bone that puts my body back in the same place I was before. Then I realized this is what most people feel that have chronic illness. The high and lows of our day to day existence. It has taught me that never to put all my hopes in the unattainable perfect health. But to focus on each day and do my best to take care of myself. As a mom I've had to put myself in my own schedule and realize if I don't take care of my own needs in the end my health will only get worse. I've had to put in down days in our schedule as a homeschool family. Also my personality needs some refuel time or I get grouchy anyways. I wasn't built to go at lightening speed. I am trying to listen to my own pace and realize my own limits. I wish I had the ability to go full out but maybe its better to stop and smell the roses once in a while anyways. It is nice now to have the ability now to push it at times and do lots of stuff. But at some point I have to slow it down and refuel again. Its just me and this is who I am. If someone doesn't understand that they can get over it! :) I am becoming more comfortable in my own skin. And I am realizing more and more what my needs are and what I deserve to have in my life. To be seen and heard, to be valued, to be treated with kindness. I like my thirties! I've been exploring going vegan and juicing. Finding things that help reduce my stress like walking and photography. I wonder what this year has in store for me. I hope there are some fun and amazing moments ahead.