Visiting a Valley Today and Not By Choice

I remember a day when I could multitask and handle a million things going on at once.  I could organize my way through it, utilizing all my resources and strength.  With each day that goes by it becomes even more evident that I am not that same person.  I feel I have been reduced to almost a child like mind that easily gets over stimulated, tired, and doesn't have the capacity to multitask much less handle more than one thing going on at a time.  When too many things come at me I buckle and collapse.  Gone are the days of strength, efficiency, and accomplishment.
Today I have buckled.  I've hit a low spot where I don't know what to do and I'm crying just hoping someone will pick me up and hold me and tell me everything will be okay....they will take care of it.  I am at such a place in my life where I'm trying to hold it together and look like the adult I'm supposed to be and am relied on to by my family and am expected to be by society. But inside I am in survival mode just yearning and screaming for someone to take care of me...like a child looks to a parent...only there is no parent...not physically here on earth.  Is this how an orphan feels? Once again I am looking for a human being to meet my needs...just like a child.  As I write this I feel God saying over and over, "I am your Father.  I will take care of you. I will hold you and tell you everything will be okay if you will just trust me. I am here."  Why can't I just rest in that?  Why do I consistently look for human help when my heavenly Father can help me in ways no human can?  I yearn for peace....only He can give that.  I scream for healing....only He can do that.  I yell for understanding....He knows and understands it ALL.  I want answers...He has them ALL.  I get all that but the child in me yells, "but I want them all NOW" because I feel my world is spinning out of control and fallin apart and I'm scared of the unknown...but He is in control of the unknown because its not unknown to Him.  Is this the lesson I'm to learn, one of the many reasons God has me on the journey through Lyme?  I will never forget the day He met me on the couch and the massive realization I had that day.  So, why when I am hit with more can I not just lay there and let Him take care of me, rub my forehead and tell me it will all be okay?  I keep asking myself, "what is He doing through all this?  What is His purpose?  What will He use it for?"....whatever it is I don't believe I have the strength to see it through.  What if I fail?  "I will if I don't cling to HIM" is the answer I hear in my head.  It is so difficult to be still and wait.  I have always felt better if I can actively be doing something about the very thing bothering me.  I have never been one to sit still and wait.  Then that is to say I have never sat still and waited on God.  
Our journey is full of a lot of hills and steep climbs but is some of the difficulty because we make the journey difficult by not trusting the guide?  I panic if I see an ant hill, or poison ivy, and I am fearful of the hills ahead and feel faint at the sight of the mountain  ahead that I need to climb to get home.  I am quick to say, "I can't do this!" or "this is impossible" or "how am I going to do this?" as if the guide has never been through this trip before.  Do I actually think the ant hill, poison ivy and hill and mountain are bigger then the guide?  Why am I so quick to panic and start looking for "solutions" my own way, totally oblivious to the guide standing there saying, "follow me, I've done this before."
My "ant hills" today were little annoyances like not being able to get the phone company to hook up our internet and we have been in the house for two weeks.  And feeling like I am always cold and can't get warm but don't want to turn the heat up in fear of the electric bills....and then we lose electricity today for over an hour.  And trying to still get us unpacked and "settled" so I can find things.  My "poison ivy" is the office still  in disarray and I need to pull together files and information to work on taxes...oh, but my CPA is no longer doing taxes and, turbo tax who I would go through, has more complaints then accolades on this years software.
But it was the sight of the "hills ahead" that caused me to completely crumble today.  My "mountain ahead" is the Lyme disease.  I am so thankful (though I have to remind myself of this as it gets lost in the fainting of the hills ahead) that we finally have an answer to what it is that has been eating at me (literally) for more than 10 years.  This alone is answer to prayer.  Its equivalent to being on a journey and not knowing where you are going for 10 years and then finally being told what journey you signed up for.  With this mountain are the hills that lead up to it.  One of my "hills ahead" is the restrictive diet I need to be on and the cravings I have.  I know my lack of "fun" foods is not helping my attitudes and moods.  My other "hills" include hours and days spent in doctor's offices, and the amounts of pills I have to take, and the cost of these pills and doctor's visits.  I hit a big "hill" today when I found out that one of the antibiotics I was prescribed (1 of 3 I will be on) is not covered by insurance and it will cost $1077.00 for 28 days and I will be on this antibiotic indefinitely.  Then I kept getting wacked in the head by trees and falling debris...a.k.a. we can't afford it, can't find manufacturer's website for financial assistance, everywhere else I look for patient financial assistance either disqualifies me because its "Lyme" or Chris makes too much money (his salary isn't below the poverty line), or because of the actual drug.  As I'm hit by trees and falling debris I discover my ant beds (i.e. no internet to be able to research my options) and the emotions snowball out of control...totally oblivious to the guide standing there...waiting for me to call on Him for help.  That was until I began to type this.  And then, with each question I typed in effort to express and release my frustration, I heard a response in my soul.  I know my ant hills, poison ivy, hills and mountains are not too big for Him.  I know they won't be easy.  They aren't figured out or solved and I haven't conquored them yet.  I do know that He is always with me and He is waiting on me to call upon Him for help.  He is my guide and if I follow Him the journey will be less painful.  I still have to travel this journey but it will be easier if I follow Him who has done it before and knows where the journey is going then to go my own way and try to figure it out on my own.

Ways You Can Help

It has been over a year since I updated this page. I started to erase and update and decided to leave it because its incredible to read how God has answered prayers and how far He has taken us.  My current prayer requests are as of today 1/26/12 are:
     * Please pray for strength as I drive in every day to do treatment through the PORT. It is a 4 1/2 - 5
        1/2 hour commitment every day. It takes such a huge chunk out of our day and is taxing on energy
        and money.
     * Please continue to pray for our family as we try to continue to function as a family.
     * Please continue to pray for our doctors, tolerance of treatment, no complications that would  
        jeopardize or challenge treatment, and cooperation of medical personal.

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Ways You Can Help

If the text is in red it has been updated since the date at the bottom.

1. The biggest way you can help is by praying:

      * Please pray for God's healing.

      * Please pray for wisdom and discernment for all doctors involved that they would be bold and not

         afraid to do what is needed and have clarity in how to treat me.

      * Please pray for God's protection over all doctors involved. *A new law has been passed that 
         protects doctors in Texas*

      * Please pray for strength for me to fight this disease, especially as I try to home school Rebecka and

         Madilyn and just function as a mom and wife. *I am blown away by what the girls have learned. I have not been the teacher but the Teacher's aid. *

      * Please pray for Chris as he juggles ministry, sick wife, school, etc. He has a lot on his plate.

      * Please pray for Rebecka and Madilyn as they grow during this time of having a sick mom.

      *  Please pray for understanding for all those that come in contact with the Saulnier family.

      *  Pray that awareness of Lyme disease increases among both people and doctors.

      * Pray for our government to stop hiding their heads in the sand on this disease but allows more    

         research to be done so that the government and doctors can agree more on this awful disease and 

         patients can be diagnosed and treated.

2.  Picture a day when you were the most exhausted and at your whits end....that is me almost every day, unfortunately. Therefore, I get frustrated easily due to being worn out and not being able to do things they way I used to. Unfortunately, it doesn't take much to wear me out or frustrate me, but for some reason, having another adult in the house appears to level me out and I am less likely to "fly off the handle". So, if you are free Tuesday through Friday from 9a.m. to noon to hang out at the Saulnier house, it will help tremendously.  You may not feel like you are doing much but its your presence that helps more then anything else.  * Frustration levels have been so minimal thanks to people from church coming to the house Tuesday, Wednesday, and Thursday mornings to help with household things and being my right arm -Thank you so much! It has been a huge model and witness to my girls and huge blessing to me and Chris. Our home is a less frustrated household.*

3.  Occasionally I have doctor appointments and/or need to go for lab work and could use someone to sit with Rebecka and Madilyn so they aren't being dragged along every time.

4.  We have been told, warned, and have read if the antibiotics are working there will be herxheimer reactions. This is due to the bacteria dying and putting off toxins that the body can't deal with.  I've been told I will have flu like symptoms for a couple days (severe headaches, fever and chills).  This isn't something I look forward to. My fear is I will have a herxheimer reaction and not be able to care for my girls. We do not know when this will happen and could wake up one morning and be having one.  It would be nice if I have someone to call on to help when it happens. *We have had our first herxheimer reaction, and possibly more, and God covered us with His graciousness and my girls have been covered.-Thank You!*

6.  With a mid-line now in I am challenged and limited in what I can do with my right arm.  Any help around the house is greatly appreciated. * Thank you to all who have helped. Becka has seen what it has done for us and wants to clean the house to "make Mommy happy". Thank you for modeling for my girls on how to bless others and help others. *

7.  Maybe a volunteer who can coordinate the last four items. * Thank you Patty and Amy and Roylene for coordinating helpers and meals. You will never know or understand how it has impacted us and blessed us. *

8.  This sounds silly but if you have a christian song that inspires you please send the name of the song/artist to me.  I have a song list I have created that I listen to that helps me stay positive and remember who is truly in control. *Thank you Kim for your suggestions. I have added them to my playlist. *

I will update this as we see more needs.

Updated 5/31/10

What is Lyme Disease?

1.  Lyme Disease is a bacterial infection caused by the bite of an infected tick. Untreated, or inadequately treated, it may cause long-term, persistent illness that often affects many systems of the body.  Other tick-borne diseases are often contracted at the same time.  

2. Fewer than 50% of patients with Lyme disease recall a tick bite.

3. Fewer than 50% of patients with Lyme disease recall the circular, or "bulls-eye" rash called erythema migrans (EM) that can occur at the site of the bite.

4.  You can think of Lyme as having three categories:

* acute  - the stage immediately following the bite of an infected tick. The classic sign of early local infection is the circular, outwardly expanding rash called erythema migrans (EM) which occurs at the site of the tick bite 3 to 30 days after the tick bite. The rash is red,

and may be warm, but is generally painless.  It has the look 

of a "bulls-eye". Not everyone will experience this rash.  Other symptoms may include headache, flu-like symptoms, and fever

Lyme disease can progress to later stages even in patients who do not develope a rash.

 * early disseminated- some patients with early disseminated Lyme disease may not have any history of symptoms, tick bites or skin rashes.  This stage of Lyme develops within days to months after the tick bite. The infection spreads through the lymph system or bloodstream and affects the central nervous system and heart.  

 * chronic - This stage of Lyme may develop months or even years after the tick bite.  Chronic Lyme can affect the skin, brain and nervous system, muscles, bones and cartilage. 

5. Lyme is often called "the great imatator" and most often is misdiagnosed as multiple sclerosis, fibromyalgia, chronic fatigue, Lupus and other rheumatologic and neurological conditions. 

     

6. At this time there is no reliable test for Lyme Disease.  Lyme is diagnosed using both blood tests and clinical presentation.  No blood test available today is 100% definitive in ruling in or ruling out Lyme disease.  The CDC's (Center for Disease Control) established standards on the blood tests were not set up for diagnostic reasons but for tracking a narrow band of cases for epidemiologic purposes. The blood tests check for antibodies to the bacteria that causes Lyme disease. The most common blood test used today is the Western Blot. Other tests include the ELISA, and PCR (Polymerase Chain Reaction).  A seronegative test result does not necessarily rule out Lyme.  False negatives are partly due to the test and partly due to antibody titers appearing to decline over time; thus while the Western Blot may remain positive for months, it may not be sensitive enough to detect chronic infection with the Lyme sprirochet.  There are labs that specialize in Lyme disease testing such as iGenex. These labs are more sensitive, and accurate where typical labs may not be.

7. Early detection of Lyme disease is important. The earlier the diagnosis the better the prognosis.  Antibiotics are the primary treatment of Lyme disease. Antibiotics are given orally, in combination, and/or parenterally (IV).  There is controversy over the most effective length of time for this treatment. According to Dr. Burroscano, "It has been shown that the longer a patient has been ill with Lyme prior to the first definitive therapy, the longer the duration of treatment must be, and the need for more aggressive treatment."  Early detection of Lyme is typically treated 4-6 weeks and Chronic Lyme treatment can last 4-6 months or longer.  The reason for such prolonged treatment is due to the spirochete's very long generation time and periods of dormancy at which time the antibiotics are not effective.

8. As the bacteria is killed off, a release of endotoxins occurs faster then the body can handle. As a result, a Jarisch-Herxheimer reaction is experienced in the form of fever, chills, headaches, and muscle pains.

9. There are very few doctors that are familiar with the different aspects of Lyme Disease. Many doctors are taught that Lyme Disease is rare and easily-curred and they may think its not a serious disease. With thousands of diseases and conditions to learn about, Lyme doesn't seem to rank very high with the majority of doctors, even though it is the most common vector-borne infectious disease in the U.S.  Nearly 24,000 new cases were reported to the CDC in 2002 and it is estimated that at least ten times that man cases are not reported.  Unfortunately, the government hasn't made it easy on doctors to treat Lyme. It seems the only thing they can agree on is that Lyme comes from a bite from an infected tick and that its treated with antibiotics.  All else is controversial.  http://www.lymeinfo.net/opmcissues.html outlines some of the debate.

10.  Lastly, the three areas someone with Lyme must focus on is rest (naps and limited activities), diet (no sugar including food that turns to sugar..a.k.a starches and carbs and avoiding food sensitivities), and being compliant with medications.  

  

***The above information is only basic information about Lyme Disease that I, a patient and not a doctor, have gathered from the resources below.  Lyme disease is a complex and controversial disease.  The above, for example, doesn't even address the co-infections that can exist due to the tick bite.  One of the best papers I have read on Lyme is by Dr. Burrascano and, although its lengthy, it will give you a great idea on the many aspects of Lyme.  It can be found at: http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf#search=%22advanced%20topics%22

For more information on Lyme please also visit:

*  http://www.ilads.org/lyme_disease/about_lyme.html (International Lyme and Associated Diseases Society

* http://en.wikipedia.org/wiki/Lyme_disease (Wikipedia on Lyme disease)

* https://health.google.com/health/ref/Lyme+disease

* http://en.wikipedia.org/wiki/Herxheimer_reaction (Wikipedia on Herxheimer reaction)

* http://www.cdc.gov/ncidod/dvbid/lyme/index.htm (CDC)

* http://www.lyme.org (Lyme Disease Foundation)

* http://www.aldf.com/ (American Lyme Disease Foundation)

* http://www.lymenet.org (Lyme Disease Network)

* http://www.lymediseaseassociation.org (Lyme Disease Association)