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!
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
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