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Too Big of a Lie

3/24/2016

7 Comments

 
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Update on my Lyme Treatment

I am in week 4 of my Lyme treatment and I’m on detox this week.  I’m beyond amazed by my Lyme doctor as they have perfected my Lyme treatment specifically for me.  Every appointment has been 3-4 hours long and every minute necessary for my healing and complete communication.  Due to my decrease in cognitive function, she covers all bases and asks lots of questions; she writes it all out for me in color-coded form for easy understanding.  I have done better than I expected, however I have a symptom of major pain, headache, nausea, chest pain, or whatever the culprit, everyday.  It’s funny because I am so used to telling people "I’m good" when they ask, that I told my doctor that I did really good on weeks 1 and 2.  She asked me to pull up my daily journal where I record symptoms.  “OH YEAH!”, as I was reminded.  I pulled it up on my phone and busted out laughing.  Well, day one I had nausea and vomiting.  On day two I wrote, “Pain is my worst enemy - every joint and muscle hurts so bad.  Pain pills not touching it.” On day three, “barely keep my eyes open but I can't sleep either. ugh. Very weak." Heart or lungs hurt (mild pain but mostly when I talk) thinking more lungs but it's in the center right of my chest.” And it continues daily with mild to mostly extreme symptoms. I guess that’s why we signed a form stating I will always have a support person. My kids were able to give some outside perspective as well.  The nurse gets down on Reese’s level and asks her if she has anything to share about mommy.  In her sweet quiet voice she says, “Mommy shakes when she’s going to sleep.”  Lilli excitedly remembered and started mocking me shaking lying down as if she was getting electrocuted, and we all laughed. I laughed as I told her about my random turrets episodes I’ve had over the last year, as they returned.  I was grateful that it never happens in public, as it happens when my brain starts to relax at bed time.  Lilli chuckled and told several stories of how I forgot important things like Reese’s birthday on the morning of.  Lilli thinks all of it is so funny and I'm grateful that my kids laugh.  She said, "Mom you always say you are going to take a shower, but don't actually do it for hours later."  Matt and my girls have been such a great support for me and especially my brain.  The girls and I have called my bells palsy of the belly "Lymie Lou" for years now.  Lymie Lou is gone in the morning but everyday reappears by noon or before. Maybe one day when the medical community acknowledges this brain malfunction from Lyme like Bells Palsy, they will label it Lymie Lou. HAHA!  That would make me smile. 

I continue to be able to walk and have normal conversations.  Often times I get lost in a conversation, but I can fake it and pick up where my brain went out.  Haha!  My brain sometimes gets a second behind real time, so I speed it up with my actions. In those times I probably look like speedy Gonzales, as I'm trying to over compensate!  Weakness can be so bad that it’s hard to lift my fingers enough to use my mouse on my computer (they shake and fall to the surface).  These things you would never know.  I teared up when my nurse said, “Sarah Lyme is a very lonely illness.”  I told her how I spent 5 days on understanding one wrong code on the church’s website.  After 20-30 hours of watching videos, reading blogs etc, I finally realized that it was missing a quotation mark.  I started balling and came into Matt and said to him, “Lyme is a very lonely disease, as people don’t know these things.”  The fact that Lyme and co-infections is extremely controversial in politics and the medical field causes Lyme patients to be outcasts.   When I was first diagnosed, I couldn’t even find a doctor who would even see me for Lyme.  80-90% or more of the population think Lyme is an easily curable disease, so when you tell them you have lyme then it’s like you’re telling them you have the flu for a week.   Family members and friends don’t understand what’s happened to you and why you can’t do the things you used to love.  In turn, they just think you’ve literally gone crazy and become a schizophrenic or sunk into a dark depression, especially when you start setting necessary boundaries like not being able to visit anymore.  I do best in my own environment, meaning my home, so if people want to see me they have to come to me.  And half the time it takes so much energy out of me to even want to entertain.  I never invite friends or family because I just don't know how to do that (oddly).  I love how my bestie Amber will message me first and ask how I'm doing, then she will say, "do you feel like having company?"  And usually I'm like YES!!!  Because I love people.  I always have.  I just don't know how to do simple things in life anymore, so the fun things always get left behind.  I'm grateful when Amber's family and Whitney's family come over.  It gives me such hope and a sense of normalcy.  It's amazing that they will come to me!!!  My amazing sister and all of these amazing people who have given support to me has given me so much hope and love in a very lonely disease; a life I have lived to the fullest of it’s effect for over 5 years now.  Please know that I'm grateful for each of you who have given financially to support my treatment.  I plan to write personal thank you cards as my brain gets healthier and ready to take on the task :)
 
As mom and I were sitting in the waiting room at Dr. Jemsek’s office, she noticed there was a news article on the wall about Dr. Jemsek’s daughter fighting cancer.  She was hospitalized with leukemia for 2 years.  It saddens me to think about this family’s fight, but it delights me to think that Dr. Jemsek has used his fight for his own daughter’s life as an inspiration to fight for our lives (patients with AIDS and Neurological Lyme).  I’ve seen 50-70 (lost count) doctors, many ER visits, Johns Hopkins, tests, hundreds of nurses, etc, and in my search for the right doctors to save my life, I’ve found 3! 

Yes, 3. 

I explained to my mom the interesting connection between each of these 3 amazing doctors who are the only ones that I trust now.  The connection is

COMPASSION AND COURAGE. 

Dr. Abidin literally saved my life by finding my food allergies, diagnosing me with Lyme, putting me on IVIG, my multiple surgeries etc.  I could go on and on about this amazing man, who is an amazing Christian.  Dr. Abidin has 5 kids and he has his own health problems and chronic migraines.  I remember the first time I saw him he said, “Let me guess, your migraines on a pain scale are 12 out of 10!”  I said you must get them too! 

My third doctor is Doctor Atiga (my heart doctor).  I was having a lot of heart trouble, high bp, fainting, palpitations, chest pain, limb numbness, circulation, etc.  After heart doctors, monitors, many ekgs, many ER visits, I was frustrated.  No one could help me, so I sought out the Lyme blogs for a cardiologist in my area, and that’s where I found Dr. Atiga.  He saved my life diagnosing me with Dysautonomia and managing my beta-blocker.  He also saved my life by highly suggesting that I go to Dr. Jemsek for Lyme treatment.  He said that he’s the best of the best and that he sends his most difficult neurological lyme patients to him.  So what makes this man so amazing in understanding my illness?  When I found him on the blogs, I read that his wife has the same Lyme Complex that I have.  You see what intertwines these doctors?  The fact that they too are going through a devastating health battle like mine gives them a COMPASSION that is unattainable any other way.  They have each gained COURAGE through their trial by using it to help others despite the controversies and unpopular protocols in the medical field.

I hope that one day the medical community will wake up.  But until then, Dr. Jemsek says it best:
​
“Lyme is too big of a lie to confess” - Dr. Jemsek

I rejoice in God my Father who continues to give me the strength I need to take on this battle.  And He continues to place the right people in my path that share the same similar struggles.  

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.

1 Corinthians 4:3-7
7 Comments
Karen Haga
3/24/2016 04:55:33 pm

Sweet Sarah- I think about you often! I feel very confident that you will get better! Much love to you!

Reply
Sarah
3/25/2016 04:40:23 am

Love you Mrs. Haga! I've wanted to just hug you over the last couple of years :)

Reply
Lindsay Akers
3/24/2016 08:38:54 pm

I love you sister! You are such an inspiration! Keep on sharing & we, with God's help, will get you through this!!! I have faith I will get my sister back!! Xoxo

Reply
Sarah
3/25/2016 04:42:00 am

Thank you for everything you've done Lindsay and how you continue to stand by my side facing this. The Lord sees your heart!

Reply
Christina Lovern
3/25/2016 08:36:24 pm

Sarah, I think of you so often and hope & pray that you will feel better soon!

Reply
Juels Jones
3/27/2016 09:34:17 pm

I just found your site and read what you had to write. I have been seeing Dr. Jemsek since 2003 also for chronic and neurological Lyme disease with a bunch of coinfection's. I was so moved by what you had to write and what you had to say. I don't often find or read many things on Lyme disease as I find that it gets a bit depressing and I figure if I don't know all the details about it I won't find that I have these same symptoms or issues. I am happy that you have the support of your family and children. I wish you true blessings and complete healing. Thank you for sharing this information. I hope we speak again, best of health, Jules

Reply
Sarah
3/29/2016 06:00:08 am

Jules, you have no idea how timely your comment was for me. God is so good! I needed encouragement these last couple of days and then you were there!! I too have had to cut off looking at Facebook groups for Lyme and various sites. There are so many hopeless people that don't have Christ. I still would like to witness God's love to them, but I've decided that I will only go on on my detox week once a month. Thank you again for taking to time to encourage me and build me up!! Hugs!! and I'm stopping right now to pray for you!!!

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     I write in order to give others hope during their trials, tribulations, and physical suffering. Jesus gives me hope and spiritual healing as I walk through the fire. My desire through my writing is that you would also gain hope through Jesus Christ. He died for the world to come to know Him and be saved by believing.

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