Why Me? Why Not Me?

I am coming out of the Easter Season with a clearer understanding of a spiritual issue I have been struggling with.  Although I accept the trials God puts in front of me, I do find myself having an expectation of there being a light at the end of the tunnel.  That light symbolizes to me a relief from the difficulties I have been living with.  Not only do I wish for a relief from my struggles, but I would love to find a reward waiting for me once I have finished walking through this dark valley.  I know, the reward is waiting for me in Heaven, but that isn't the reward I am talking about.

For me, I find myself coping with my problems by hoping for a better future.  I've gotten so I can trust God with the things that cause me stress, I can accept the problems I have to deal with, I know there is a greater reason for my struggles.  What I'm not good at is having acceptance of dealing with any struggle that will affect me for the length of my life.  I always view my problems as a temporary issue.  I don't allow myself to entertain the thought that I will be suffering from severe trials ten years from now.

The fact is, God hasn't promised us a life without struggles.  Honestly, when I allow myself a WORLD VIEW, I realized my problems are trivial compared to the millions of individuals living in 3rd world countries. Any frustration I feel over the amount of difficulties I have had to endure is selfish when I look at my difficulties in comparison to others.

I have often felt I had PTSD when it came to trials.  I have had my fair share.  I also have an understanding and commitment that my life isn't mine, but it's Gods.    As weary as I am from my life, I wouldn't trade it because God has designed me for a specific purpose and I do intend to live out my purpose, even if its hard.



So, the struggle I have had is knowing how to pray.  I know I am suppose to pray with faith God can answer.  I know I am suppose to lay my burdens at his feet and He will handle them.  I know these things, but I also know that God may not be ready to rescue me from my struggles.  I think I'm worried that if I prayed for God to "fix things", I would be angry if He didn't answer as I hoped, or worried that my attitude would change and my willingness to live for God, even when its hard, would leave me.

The answer is really very simple.  Today I was reading about when Jesus was betrayed.  His disciples pulled out swords and He chastised them.  He remind them He could call to God and have a legion of angels be sent.  He didn't do this, because what was to come next was part of God's perfect plan.  It somehow made me feel better to know that even Jesus had circumstances that He needed help with, and even though we know God was able to send help, it wasn't in God's plan to do so.  Jesus wasn't in this circumstance because of a bad decision, He had done nothing wrong to deserve it.  Jesus had also prayed and asked for a way out.  His asking didn't show a lack of willingness to go through a struggle, because in the end, he resigned His will to God's will.  I guess this gave me permission to ask for a way out of my trial, but also know that if God isn't changing my situation, it isn't because I have done something wrong, or because there is some puzzle I have to figure out first.

And really, I can say, "why me?" .  The truth is, "Why not me?".

I'm Alive! Living with Lyme not Dying from it!

a·live

əˈlīv/ 

adjective

1. 1.

   (of a person, animal, or plant) living, not dead.

   
   
2. 2.

   (of a person or animal) alert and active; animated.
3. 
   
4. 

Often, people with Lyme Disease describe themselves as being the living dead.  This is partially a defensive comment in response to the statement from others that Lyme isn't a big deal because it isn't a fatal disease.  First let me state that Lyme IS a fatal disease.  Just ask the many family members of those who have lost their life to this illness.  Another reason Lyme sufferers describe living with this disease as being the living dead is because it does feel that way.  Lyme robs us of our energy, our ability to walk or use our hands, our ability to think, speak, read, or write.  Many of us who live with lyme have found ourselves bedridden for months or years at a time.  It's easy to feel like you are dead when you feel closed off from the rest of the world.  At my worst I couldn't even watch tv or listen to books on tape because I couldn't process the spoken world.  It sounded like gibberish to me.

As easy as it is to describe myself as being dead but still awake, I am choosing not to do that.  What does being ALIVE really mean?  I'm sure we could all come up with different definitions, but for me I think that I feel alive when I have a sense of purpose.  

Romans 8:11

And the spirit of Him who raised Jesus from the dead is living in you.  He who raised Christ from the dead will also give life to your mortal bodies because of His spirit who lives in you.

That is how I feel.  Even at my worse, when I am only able to lay in bed staring at the ceiling, I still feel alive.  Being a Christian I contribute it to the Holy Spirit, but it's more then that.  I think it is also because I have a deep rooted sense of purpose.  Because I feel as though my life has meaning, I continuously search out what that meaning is, or what my purpose is, and it's that, the searching, that makes me feel really alive.  On my worse day the searching happens through prayer and reflection.  On my better days the searching includes both finding little ways to make a difference and also planning for the future.

If you have lyme, or know someone with lyme, you know how hard planning is.  There is no way of knowing from day to day how you will feel, if your treatment is going to continue to work, or even if you will be able to pay for your treatment.  Even though planning is difficult, you can still plan.  My planning isn't about making a decision about what I am doing next week, it's about what I plan to do when I am better.  Notice I didn't say IF I get better. That's important.  I do not even contemplate the thought of not getting better.  Getting better is the only option.  Now that may take months, that may take years, that may take decades, how long isn't the point.  I live every moment in anticipation of being well again.  I am realistic in my knowledge that treatment is long and difficult, it isn't even guaranteed, but if I were to worry about not getting better, I would be trying to get well while carrying a heavy burden.  It's kind of like a self-fulfilling prophecy.  I believe firmly that if I dwell on negative thoughts, those negative thoughts will become reality.  Instead, I focus only on positive thoughts and I believe that my body will respond positively in turn.

Some of the plans I make are specific.  I make them specific because I know that they are goals that are attainable.  The plans include losing the weight I have gained this winter, beginning an exercise program, writing a book, walking a 5k next year.  I know these plans are obtainable based on my health right now.  If something happens to make fulfilling these goals more difficult, I will just adjust my thought process and come up with some new goals to meet me wherever I am at.

Some of my plans are big dreams that I honestly don't know if I can obtain.  These are things I want for my life and although they aren't possible right now, I don't want to assume they will never be possible.  Dreaming is one of the ways I stay positive.  It helps me feel alive! It gives me hope!  If I were to allow myself to doubt or worry, then I'd sink into a dark place where I don't want to be.  

Sometimes, when online, it's easy to worry and doubt when you hear the heart wrenching stories of others who are suffering worse then I am.  The Lyme World can be a world that feels hopeless, and with good reason.  I don't want to ignore these stories, I need to stay grounded in reality so I have a clear picture of what I am dealing with.  I do two things that help me not succumb to fear and depression when walking through the World of Lyme.

     1.) I recommit myself to helping others in every way I can, both now and even more so in the future.  These people don't need my pity, they need my encouragement, and they need help both from me and from those around them.  I want to help others with lyme on a personal level, but also at a community wide level in helping to change how our friends and families understand what it means to have Lyme Disease.

     2.)  I make sure I read success stories.  There are many who have been sick with lyme, and who have recovered and come out on the other side.  I remind myself of these people as often as I can.  It helps me stay focused on HOPE.

Bottom line, I REFUSE to be defeated!  Call it stubbornness, focus, perseverance, or just plain denial......whatever it is, I'd rather live my life this way, then live as though I'm just waiting to die.

You can take my body but you can't take my spirit!

Ignorance Over Lyme

I still feel surprise whenever someone contacts me with a story about a health care provider discrediting a lyme diagnosis.  From hospitals only giving out two doxycycline pills when a patient comes in with a tick and bulls eye rash, to doctors denying that lyme even exists!  It is maddening how hard it is to get adequate treatment for an obvious new lyme infection.  It is so easy to treat if you catch it early on!  It is malpractice, as far as I'm concerned, not to take a new infection seriously.

Despite the constant surprise I feel over the ignorance of our medical community.  I was caught off guard again, recently, at the ignorance of the general population of our country.  I have become so accustomed to being around people who know what lyme is and understand it's devastating effects on someones life, that I didn't realize a large portion of our country had no clue how serious and prevalent this epidemic disease is.

Although sad that Debbie Gibson has had to suffer from chronic lyme disease, it is a relief to have yet another celebrity stand up and go public with their struggle.  The first feeling I had when I read the People article about Debbie Gibson's struggle with lyme was validation.  Once again, a public figure shares their experience of misdiagnosis, multiple doctor's appointments and tests with no answers, negative lyme test results and eventually a trip to a lyme literate doctor to find out that yes, they actually have lyme.  Not only that, but she also can testify to recovering and getting her life back after long term treatment.  How long can doctors keep denying this disease when person after person has the same story?

When reading Debbie's story on various media outlets I got a glimpse at what it's like to be a celebratory.  I expected comments on the articles to be supportive.  Instead, people insulted her, made fun of her, and accused her of trying to get publicity.  There was a complete lack of empathy over what she has suffered.  Even worse, I realized that those who were commenting didn't even understand the seriousness of lyme.  One person stated, "what's the big deal, my dog has lyme".


I realized that it isn't just the medical community, politicians, and media outlets we need to educate.  We need to bring awareness to the general population.  No wonder this disease isn't on anyone's radar as a disease to be concerned about.  If Debbie had come out saying she had been treated for cancer, the general response would have been different.  Our society is well educated on that disease.  It seems obvious to me that educating the general population will eventually lead to policy change.  We are losing if we aren't sharing with the public the horrors of this disease.

This leads me to my next thought.  I have also been surprised, and slightly discouraged, by the number of people who stay silent about their diagnosis.  On one hand I get it, when you are sick you don't want to deal with negative feedback, controversy, or even having to explain over and over again what lyme is and why treatment is so complicated and expensive.  On the other hand, if WE AS LYMIES don't speak up, who will speak for us?  I know it's hard, believe me, I'm sick too!  I just figure if I want things to change, then I need to do everything I can to help facilitate change.

The good news is, articles like the one People did on Debbie opens up a diagloge about Lyme.  Even though the comments at first were negative, when I look again today, I saw lots of lymies had spoken up and there were lots of responses from people expressing their surprise and concern that lyme was such a big deal.  Even if we are educating one person at a time, people are slowly becoming educated.

Born to Run...Living with Hope

I first realized I had an ability to run in fourth grade.  It was field day and I had signed up for the mile race.  I hadn't done this because of a love of running, I did it because everyone who finished the mile got a ribbon.  I simply wanted a ribbon and felt this was a sure fire way to get one!

My plan was to go slow and pace myself so that I would be able to complete the race.  I tried to stay in the middle of the pack.  The problem was, the pack was moving very slow....at least it felt like they were.  Half way through the race I noticed everyone was breathing hard and slowing down even more.  More out of annoyance then anything else, I decided to run at a faster pace then the crawl I was currently in.  I slowly increased my speed being careful not to over do it.  As I continued to feel good, I ran faster.  Before I knew it, I was lapping the other racers.  It was the first time I had ever excelled at something and it felt GREAT! As you can guess, I easily won, earning that ribbon I wanted.

1986 Knowlton School Field Day

I looked forward to middle school and being on a x-country team.  The experience of running with a team was my favorite part of middle school.  I had finally found my "thing".

I switched schools when I went to high school.  I had every intention of continuing to run, but would have to do it on my own because my new school didn't have a x-country team.  I played soccer which I also loved, but in the back of my head I craved the adrenaline that went along with running a race.  After taking a year off I tried to start running again.  It was difficult now.  My knees hurt, they hurt ALOT! The doctors didn't really have an answer as to why they hurt.  They were a little swollen, but not enough to be a concern.  I, at first, blamed it on lack of conditioning, then I blamed it on the shoes I was wearing, in the end I chalked it up to maybe I had over done it when I was younger, running to much causing some damage to my knees.  Whatever the reason, I couldn't run anymore.

Over the years I made numerous attempts to start running again.  I was never successful.  My knees just bothered me to much and I was afraid of doing something worse to them.  I grieved the loss of my favorite sport.  I watched as my former team mates went on to excel at running when they were in high school.  I always wondered if taking a year off was part of the reason I could no longer run.  

Both of my daughters inherited my long distance running capability.  Even though they were good, they didn't embrace the sport like I had.  It made living vicariously through them impossible!  It actually took a lot of effort on my part to let go of my desire to see them run and let them choose for themselves what they wanted to do.

Last year, I started taking Galaxy, and this supplement resolved my arthritis pain!  For the first time since middle school I felt I could run again!  Unfortunately, this excitement was short-lived.  The neurological symptoms from lyme disease set in and I had to accept the fact something was seriously wrong with my body.

I could sit here and be angry about all that lyme has taken from me.  I have a lot to be angry about.  Instead, I cope by looking ahead.  I now know why my knees hurt so badly.  Not only do I have a reason for the knee pain, but I have hope that the knee pain will get better and I will be able to run again!  

I use to dream about running in the Boston Marathon when I was a kid.  Every year at this time, I go back and experience the burning desire to race.  In the past, when I dreamed about racing, it was just something that was a lost ability to me.  Now, I actually can think about it with hope that MAYBE I will be able to return to my favorite sport.  

Next week is a 5k at the Main Mall in Portland for Lyme Disease Awareness my hope is that next year I will be able to walk the 5k.  My DREAM is that there will come a day where I can actually RUN in this race!

Lyme disease is a horrible thing to live with.  As bad as lyme disease is, it was worse to be chronically ill with no idea as to what was wrong.  Now that I have an answer, I can look forward to a new future.  Other people with Lyme have gone into remission, why not me?

Lyme Patients Need to Start Acting Up!

I'M ALL DONE!

I AM MAD!

I AM GOING TO DO SOMETHING ABOUT IT!

ac·tiv·ist  [ak-tuh-vist]  

noun

1.

an especially active, vigorous advocate of a cause, especially a political cause.

adjective

2.

of or pertaining to activism or activists: an activist organization for environmental concern.

3.

advocating or opposing a cause or issue vigorously, especially a political cause: Activist opponents of the president picketed the White House

I carry many titles, wife, mother, daughter, sister, aunt, martial artists, instructor, educator, friend, christian.  I am adding a new title to my list: ACTIVIST

I am disgusted with the ignorance over a disease that can be so damaging!  I'm angered that so little attention is being payed to an epidemic that borderlines being a pandemic!  I'm shocked that so many are allowed to suffer silently.  I'm saddened that those who are sick are invalidated, being given labels like, hypochondriac, mental, crazy, lazy, attention seeker.....

It isn't ok that those who are sick with Lyme often hide their diagnosis from friends and family due to the negative stigma associated with it.

It isn't ok that those who DO share it with their family and friends find themselves rejected, judged, and ignored.

It isn't ok that thousands of the sickest among us are denied treatment because insurance companies won't pay for it and they can't afford it.

It isn't ok that those who are sick find themselves in financial ruin.

It isn't ok that so many who are sick find themselves alone with their illness.

It isn't ok that much of this could be prevented with better diagnostic tools and early intervention!

I'm having a good health day today.  It has been a few weeks of not feeling well due to my lack of ability to afford my medication.  Thankfully, family came forward and helped us pay for a few weeks of my medicine and I'm starting to feel better again.  It goes to show how much I need this medication to recover!  

I'm blessed, I consider my Lyme Literate Doctor (LLMD) to be one of the best out there.  Unfortunately, there are many doctors who are LLMD's but they don't have the knowledge needed to treat chronic lyme successfully.  This isn't a judgment, I'm thankful for anyone who is trying to educate themselves and help those that nobody else will.  I am calling attention to this, because it is a symptom of one of the many issues involved with the lyme controversy.  Those who don't consider long term antibiotics helpful, often point to the patients who have been on antibiotics for years without improvement, and even worse, they have damage from the antibiotics they were taking.  I'd like to turn this around, I see it as a problem due to lack of education, research, and resources.  I applaud any doctor, who is trying their best to help those of us who are sick when nobody else will.  If you are a doctor who is in this only for the money or you don't keep up with current research, well, I don't respect that.  

Anyway, I am increasingly frustrated with the fact that I know what treatment is working for me and the only thing between me and getting well is a whole heck of a lot of money.  NOT FAIR!  

I can accept that my lyme diagnosis was missed, because I contracted it back in the 80's when little was known about it.  My dad thinks I probably got infected during one of our fishing trips in the White Mountains of New Hampshire.  He said you could fill a cup with all the ticks you pick off yourself when there.  Anyway, excuse my Lyme induced ADHD....back to my point.....

I am appalled by the lack of seriousness given to people with an obvious new lyme infection.  How lucky would I have been to have known I had lyme as soon as I got it!  There is no need for anyone, who shows the doctor a bullseye rash, not to have a heavy dose of antibiotics.  I'm not a medical professioal, BUT if you give strep throat ten days of antibiotics, why can't lyme also get the same treatment?  

There are so many reasons for us lymies to be ACTING UP!  In fact, if you are reading this and you don't have lyme, you also should be angry!  What if you get infected in the future?  It is VERY probable!  Our situation can just as easily be your situation!  At the very least, as a tax payer you should be mad!  Think of all the people who are disabled, unable to work, needing government assistance, all because they have chronic lyme disease.  These are people who WANT to work and be an active part of their community!

Here is what is most frustrating: those of us who want change bad enough to become activists are also to sick to be very active!  We are able to do very little in standing up for ourselves, we are the most motivated, but can't do a lot! HELP US! PLEASE!

Back in the 80's individuals with AID's had a lot of the same issues we with lyme have today.  Now, although I don't agree with everything the group that called themselves "ACT UP" did, I do agree with the idea of demanding to be heard and doing what needs to be done to stop injustice.  

Here are a few of the things they did:

• Demonstrated on Wall Street and Broadway to demand greater access to experimental AIDS drugs.
• The day before the demonstration, the organizer wrote an op/ed piece explaining the issues ACT UP were concerned about.
• Act Up members chained themselves to the VIP balcony at the New York Stock Exchange to protest the high cost of the only approved Aids medication
• They shut down the FDA for a day, it was the largest protest since Vietnam
• On April 15th they protested at the NY post office to catch the attention of all the last minute tax filers
• Women targeted the CDC for it's narrow definition AIDs/HIV
• Day Of Desperation: 3 Act Up members entered the CBS Evening News yelling, "Aids in news, Fight Aids not Arabs"  (I love this one, if you can't get the media to pay attention to you....well you just bring your issue straight to them!)

Are these extreme measures?  YES! But it was an extreme situation!  Guess what?  It worked! Aids now gets billions of dollars every year for research, diagnosis and prevention.  The landscape of the aids epidemic has changed dramatically!  

We could now easily exchange the word AIDS for LYME.  It is the exact same problem with a different name.  I hate to be the one to break the news to you, but LYME is a cousin to syphilis.  Lyme is a blood born pathogen.  Lyme can be passed from mother to fetus during pregnancy and from mother to baby during breast feeding.  There are multiple study's that have been done showing the high probability that Lyme can be transmitted during sexual intercourse.  

So, I am upset I have been sick for so long and have judged myself for being lazy or a wimp.  I'm upset that the doctors who I went to for help were ignorant concerning all the obvious symptoms I had for lyme.  I'm upset that finding a lyme litterate doctor is so difficult.  I'm upset that I gave lyme to my children.  I'm upset that I have a medicine that is working for me, but it's to expensive!  

I'm ready to ACT UP!

May 16-18 is the World Wide Lyme Disease Protest

http://wwldap2014.blogspot.com/

Check it out and see what events are happening this important weekend in your area!

May Day Project is May 22nd and 23rd. This is a protest at the national IDSA headquarters

http://www.themaydayproject.org/

Join us in making this year the year of change!

Real Life in the Lyme Land

Before I get started, let me put out a disclamer:
I'm NOT looking for sympathy!
I'm NOT looking for money!

In fact, my situation isn't as bad as the situations of others with this disease.  The stories I hear are heartbreaking.  They make me feel guilty for stressing.

So, if I intend to share my story to help create better awareness of this disease, then I need to share all of my story.

As I have mentioned before, my most important medication costs over $700 a month.  Then there are the co-pays for my other meds, and the cost of the probiotics and supplements.  My husband isn't taking injections, but still he has co-pays and the cost of probiotics and supplements.

My daughters both have appointments with a lyme literate doctor this month. Thankfully Pay A Dime For Lyme helps pay for the trip down.  Their intial appointments this month cost $400 a piece, and the testing is $260 a piece.  My youngest has had her appointment and has started treatment.  Her medicine and supplements are costing us about $250 a month.  The doctor would like to see her on injections because she has some neurological symptoms, but we just can't afford it.

Because of all the medical expenses this month, and because I refuse for my girls to wait and get as sick as me before they get treatment, I decided to stop my injections for a while and switch to oral medication.  My doctor isn't thrilled about this switch because it will just prolong my treatment, but I have no choice.

On top of all this, we have just found out we have to move.  We now have to pay the deposit and first and last months rent at our new home as well as continue to pay on this lease until June.  The new landlord has worked with us a bit, but we still have had to pay a lot up front.

Because of the need to put money towards a move, I haven't even purchased my oral medication yet.  I'm still taking my meds for my co-infections, but my new insurance doesn't kick in till May 1st.  The Healthy Maine RX plan has helped a lot with covering the cost of medication but my knew oral medication isn't cheap!

So, here I sit, trying not to worry.  Worrying makes the lymie even more sick!  Stress can seriously set you back.  I have held on to my faith that God knows my need before I do and already has a plan, but I'm struggling with making decisions.  Should I keep all my kids appointments and just buy the medicine and wait for God to supply? Should I wait for God to supply first?  The girls are functioning, should I have waited to have them seen?  Should I decide not to buy the meds at all until after we move and trust that either God will divinely heal me, or at least keep me stable, or even accept that God may have it in His Divine Plan to allow me to become ill again.  I don't know.

What I do know is that I have slipped backwards, I'm having a hard time thinking clearly, which is make decision making difficult.  Treating bartonella is causing me to have anxiety, as anxiety is a symptom of bartonella.  So it's hard to know what anxiety is caused by the bartonella and what is caused by my worrying.  I am having headaches and pain which further hampers my ability to think clearly.

I just don't know what to do.
A lyme friend pointed out there is a reason Lymies are called lyme warriors, this is a disease that requires a warrior spirit to overcome!

dealing with anxiety and chonic illness

One of co-infections I am being treated for is bartonella.
 Read about bartonella at http://www.lymedisease.org/lyme101/coinfections/bartonella.html

One of the major symptoms of bartonella is anxiety.  I've been taking zoloft for anxiety for years and it has helped me manage my unreasonable concerns effectively.  Unfortunately, being a bacterial infection, treatment will cause an increase or worsening of symptoms.  Great, just what I need.  If this isn't enough, chronic illness in and of itself causes situational anxiety.

 Part of me feels like I should lock myself in my room and come out when treatment is all done.

Shutting myself away from humanity isn't a realistic option.  So, I just have to pull my big girl pants up and find ways to cope.

My biggest coping skill is putting all my worries on my Saviors shoulders.  Yes, that is easier said then done, but what is the alternative? Worrying until you are sick?  Oh wait, I'm already sick, so worry will only make me sicker.  God tells us to cast all our cares on Him.  The struggle I have is knowing what that REALLY means.

I find myself trapped in between the idea of "letting go and letting God" and the concept of being self-reliant. For me, worrying happens as I try to solve whatever problem I am in.  This just causes me to feel helpless and desperate.  I start blaming myself for the situation even though my circumstances are out of my control.  This is no solution.  Lymies need to be very conscious of how stress can affect their treatment.  We need to be able to rest and allow our bodies the time needed to recover.  That's kinda hard to do when treatment is so expensive!  The alternative to this is sitting back, praying and fasting, and waiting for God to provide the answers.  I find this very difficult for two reasons.

1.) I feel like I need to be doing something proactively.  I start out with the intention of giving God all the glory, but instead, I find myself slipping into a thought pattern that puts ME in charge and expecting God to just pat me on the back congratulating me.

2.) I worry about my ability to discern God's will.  I have full faith that God will take care of us in some way, but I don't have faith in myself to make decisions.  I've told God on a number of occasions He is just going to have to slap me upside the head with His Will.

I want to trust God
I want to be living in His will
I want not to worry
I want to know what to do

When you are sick you can find yourself in a state of desperation.  Lyme disease is a horrible disease because it is so difficult to pay for GOOD treatment.  As it is, I'm going to have to stop my injections due to the cost of them.  This will dramatically slow down the healing process unless God divinely intervenes.    There is no way I can work.  Scott is sick, we aren't sure if he is going to be able to work.  On top of all this both my girls are ill.  It would be irresponsible for me to not treat their lyme or to wait until they are as sick as me before starting treatment.  Four family members paying for treatment.  If we only had medical bills it wouldn't be bad.  Unfortunately, we have to move, which costs money upfront.  My daughter needs a deposit for the college she plans to attend.  We pray daily that our car will continue to run.  I don't think I've ever been as overwhelmed as I am right now.  How do you do it without trusting God?  I'd go insane!  Having an inner peace that God is in control is better then any anxiety medicine.  I know that no matter what situation I find myself in, as long as I'm trusting God and growing closer to Him then where ever I am is where I'm suppose to be.