2011-2012 - I had a newborn very ill with me. It was a struggle to get her to the doctor, and impossible to get myself to a doctor. There were times I was so weak, I couldn't sit up to burp Reese.
2013 –I was completely out of it, sick all of the time. Matt would come home to a disaster with while our two-year-old and I stayed sick on the couch. Matt would beg me to go to the doctor. I was burned by doctors my whole life, so I just told him that they would just tell me I'm fine and turn me away. Reese and I laid on the couch watching cartoons, while I watched "how to us Illustrator" videos on my computer.
August 2013 - when I began to have neurological symptoms. Lilli would have to grow up fast during this time as she was taking care of me. She remembered things for me, packed her own lunch, walk herself to the bus stop. She would find me laying in the floor many times where I was unable to stand. Breathing became difficult for me.
September 2013 I remember my sister Lindsay coming up to take me to the ER in Fairfax. My right leg would not operate correctly and I would have to drag it as I walked. I was so very weak, but I pushed to get better at this point. And yes, the doctors did the same thing they always did. That ER visit - the resident treated me as if I was wasting her time. She sent me home with a possible urinary tract infection (inconclusive). Then my parents were angry and they all took care of me at this time. Matt was certain I was a hypochondriac (we are able to laugh now). They took me to Johns Hopkins twice. No one could find anything, because the brain is impossible to test. I didn’t know it was my brain as I had no idea that there are actually 40 different types of seizures. Johns Hopkins did find that my left ventricle of my heart was slightly enlarged. But again, turned me away. I began to run around frantically with the help of my family going doctor to doctor. My mom took me to a Johns Hopkins rheumatologist. As I was throwing up and couldn't bare to see any light, the doctor said, "You are not sick enough to be in my office." That's verbatim. I never saw what he looked like because I couldn't even look slightly up. I was pawned from one doctor to the next.
October 2013 – They finally said, “Your gallbladder “may” be going.” He asked me if I wanted to do the surgery, because they may take it out and it be good. None of the tests I did showed the truth. I begged to do the surgery, because I had no idea what else to do. When the surgeon went in, he discovered my gallbladder SO diseased that it had grown attached to my stomach. They had to cut it off the stomach. They typically do these out patient, so they forced me to go home. I begged them to keep me in the hospital, the pain was unbearable. I laid on the couch for 10-12 hours (not even able to go to bathroom). I could barely turn my head. Come to find out later, this was the first dose of IV antibiotics I had ever gotten with Lyme (I didn’t know I had Lyme at this point). I had a major herxheimer reaction (this is where the bacteria die and toxify your body). My dad and Matt couldn’t even lift me so they had to call an ambulance. Looking back I see that my body had become paralyzed. As the antibiotics wore down, gradually I was able to move again, but it took 4 days in the hospital to completely regain my mobility. Again, doctors and nurses told me I wasn’t trying! And the doctor told my mom, “I’m sorry, she’s not a cookie cutter case. I can’t help you.”
December 2013 - January 2014 – I had given up. I just couldn’t fight anymore and I laid on the couch just asking God to take me home. My friend Bekah called me at this point (I hadn’t talked to her in awhile; it was God's timing). She told me to fight and she prayed over me. I was asking God to take me home to Him. Many may not understand this, but I was at this point many times. I wasn't suicidal, because I trusted Jesus' timing. But I was certain it was close. After Bekah encouraged me to fight, I got back up in my search for wellness. She said, "Sarah, some people die before their time, when they willing give up!" So, I began to fight again!
July 2014 – Dr. Abidin FINALLY caught the Lyme! My NEGATIVE test according to CDC guidelines, was actually POSITIVE! I had Lyme for a minimum of 20-25 years, so my immune system (antibodies to fight Lyme) was losing the fight. I was in search for a Lyme doctor, thinking this was going to be an easy fight with 30 days of antibiotics. Boy was I wrong. I couldn't even get a doctor to take on my case.
August 2014 –I finally found an infectious disease doctor. The very first thing he says to me, "There are two schools of thought regarding Lyme. Lyme can be beat in 20-30 days or few other controversial doctors treat with long term antibiotics. If you are seeking the latter, then I can't help you." I had no idea what he was talking about. He put me on doxy for 30 days. It made me so sick. Then I found an internist who put me on IV antibiotics for 70 days. When I told him it wasn't working, he said that we would try other things. Something happened between that visit to the next. He walks in with his head down, and says "I can't help you anymore. Here's a referral for an infectious disease doctor." My best assumption is that his colleagues had told him he could have his license suspended if he over treated me. He could also be sued by the insurance company. This is what happened to my doctor that helped me the most, Dr. Jemsek in DC. At this point, I could barely walk up the steps. My limbs were so heavy, I learned to drive with two feet. I had migraines to the point of throwing up. I had so many symptoms the neurologist said that I was crazy and put me on psych meds. I cried all the way home believing I had gone crazy. That MRI of the brain I begged for, caused me to have a seizure so bad, that I was walking like in the video below. Somehow I managed to drive myself to a local ER. The doctor there was great and ready to do a spinal tap. Of course he calls my neurologist. Dr. Fishman told him that I was basically causing my symptoms with my anxiety. He told the doctor to give me an IV of Ativan and send me home. The good thing was that it worked. I didn't know that the "anxiety med" was also used to treat seizures. Oh the relief that day. There is no pain associated with these, but it's scary to think that I may never walk again.
May 2015 – I found a Lyme doctor in Roanoke, VA. At this point I was driving myself the 4 hours and would have to pull over and sleep 15-minute intervals to keep myself from wrecking my kids. I didn't know why I was so plagued with fatigue. She put me back on the IV with double the antibiotic amount. This time I had a home nurse because I was unable to do the daily trips to the hospital. Dr. Talty was amazing; however she could only get me so far. After 3-4 months on IV with her, I transferred my line over to Dr. Jemsek in DC. I continued multiple antibiotics and detox until January 2017. This time I was rotating several antibiotics. I have drawers and cabinets full of medication.
September 2015 – I started passing out because of my heart. My heart beat went up to 180 bpm and it couldn’t get enough blood to the brain and I would pass out. Jesus saved me at least 5-6 times this happened. I would wake to my 3-year-old standing over me saying, “mommy”. She didn’t seem concerned so I imagine I wasn’t out long. Death was certainly closing in on me. I went to heart doctors who would take one look at me and not believe me. "You don't look like you should be in my office. You look healthy." I mean, what does healthy look like? How does anyone know what's going on inside the body by what the outside looks like? After Echo, EKG, heart monitor, tilt table etc… nothing would show up, because my brain was causing it. Dysautonomia / POTS. I was so tired of spending 6-8 hours in the ER for them to find nothing; so I quit. My home nurse forced me to go, calling Matt or she would call an ambulance. Another time I went to urgent care because I was having trouble breathing. She was in the office all of 1 minute feeling my crazy fast and off heart beat (tachycardia and arrhythmia), and she said I MUST go to the ER and she was calling an ambulance. I didn't want to go in an ambulance, so I had to sign agreement to go immediately to the hospital. She would call the hospital to make sure I went. Again, 8 hours later, with nothing.
I was so fatigued, so I did a sleep study and they told me that I had mild sleep apnea, and I shook (myoclonic seizures) 255 times a night! They called it restless leg syndrome. My immune system was not good, so I was also on monthly IVIG (Intravenous Immunoglobulin Therapy). This was a 6-hour day on IV. I only came off recently because my new doctor is trying other natural treatments. My doctor then, told me that I had to have had Lyme since at least 1992. It made sense because my dad was a boy scout and we went camping very regularly. I also grew up running through cow pastures! We lived outdoors.
At some point, I would see another neurologist. His tech did an EEG on me. I shook uncontrollably every time the light was in my eyes. He never actually picked his head up from the screen and looked at me; he wasn't even in the same room. He focused only on the test, my brain waves. Shockingly, NOT, he said that the EEG was normal.
August 2016 – FINALLY, I found a heart doctor on a Lyme blog. Dr. Atiga redid the tilt table test. The first doctor mocked me and did the test wrong. As they tilted the table from laying to standing, I felt a terrible sick feeling and I started to shake uncontrollably and then I nearly passed out (he did something to make sure I didn’t). My blood pressure and heart rate had dropped dramatically. It was very scary. Then Dr. Atiga says to me, “I don’t typically put a pacemaker in a 36-year-old (only about 1% are placed in patients under the age of 64), but I would like to put one in you. Are you okay with that?” I cried and said thank you thank you!! Dr. Atiga saved my life!
After the placement of the pacemaker, I was more depressed than I’ve ever been. Not only was I so sick, I couldn’t do ANYTHING for myself. I had to rely on my dad and family to take complete care of me. I was miserable and helpless.
September 2016 – November 2016 – The herxing was killing me. I would drive to the store and then on the way home I would forget where I live. I couldn’t remember a split second ago. I’m surprised I knew my family’s names. I know God's grace and healing were constantly working in me. The brain was so toxic that I even went completely paralyzed one day. Lilli was 9 and Reese was 5 and they were downstairs in the basement while I was up in bed. I couldn’t move a single finger, toe or anything. I couldn’t even speak. I was fully aware of everything and I could see, but couldn’t turn my head. Finally, Reese got scared and came up to yell for me. When she spoke it somehow triggered the ability to speak back. I yelled down, “Reese come help Mommy.” I told her to pull me out of bed. She pulled an arm and it triggered it to move. Then my leg, and then my whole body. I could walk, talk and move again!! One time, I lost my voice for 2 weeks. Most of the time I could barely get words out of my vocal box, but part of it I was completely mute. It came back in a split second when I was talking to Lilli. Praise God! Another supernatural healing.
These stories are just the ones I can remember right now. You can imagine so much more struggle than this. Like I said at the beginning, "Vague." I know in my heart of hearts that I was only able to survive this by the grace of God. And, this really brings us up to present because I’ve not gotten better, but I have learned how to live differently:
I lost / lose circulation in my limbs at night. Sometimes, I sleep in the recliner, because lying flat causes my heart not to be able to pump all the way out. Sleeping legs up and head elevated helps my heart work. It also relieves joint pain.
I stay on one level of the house the best I can, and I put baskets at each staircase to fill up with items that need to go up or down. Matt carries them for me when he gets home. I never take staircases in public places when there is an elevator. Walking too far or uphill makes my legs burn. I’m completely exercise intolerant; this is a symptom of dysautonomia. I definitely get looks when I pull into the handicapped parking space. I only have enough energy in one day. Parking close gives me a little bit more time to get through.
Pain debilitates me especially at night. I wake up all through the night stretching, moving and even going to the recliner. I can’t tell you how many times I walk into a room and forget why I’m there. It happens almost every time, many times a day. I can’t walk barefoot at all because of the neuropathy in my feet. Barefoot causes stinging and sharp pains in my heel and also like walking on coals and 1,000 needles. It’s awful. I also get terrible hot flashes where I’m sweating and everyone else is chilly. My sense of smell is so heightened that I try to avoid public restrooms, even because of air freshener. I get headaches daily and if I don’t treat it and lay down, then it’s migraine to the point of throwing up. I have to sleep with a minimum of 6 pillows at night and I’m so sensitive to light that all curtains have to stay closed at all times. Lights stay off during the day, and when Matt is home, the lights that are towards my eyes stay off. Sometimes I wear sunglasses indoors. Breathing is difficult at times. There was a point where my brain wouldn’t tell my appetite to work. I stopped eating and I lost weight. Matt started putting food in my mouth which then I realized that I wasn’t getting hungry! I just don’t know day to day what symptoms will come on. But there’s never a day without symptoms. I always say that it is a good thing my memory is bad, because I can always smile! Oh the grace of Jesus.
I always need back support. My joints in my back, neck, fingers, knees and ankles hurt so bad each at different times. My back and neck hurt ALL THE TIME. So does my jaw. Sinuses are so chronic that I get the daily headaches and will have to go to ENT consistently to get suctioned out. This is after 3 sinus surgeries.
I don’t go outside much. If I am around people, it takes a lot out of me. Mental fatigue causes physical symptoms. So, if I’m around people, then you can count on that amount of time for me to be down afterwards. If I visit family for a week, then you can count on me being down the next. It’s a game of knowing how to divvy my time and effort, because everything I do has a cost. If I have a two-hour doctors appointment then that’s all I can do for that day. Sometimes I try to shove two in one day, but it kills me. The whole next day I’m out. If I have over 4 things on my calendar in a week; that’s stressful for me.
I have had to relearn everything in life, and I continue to have to relearn. For example, as I was just typing, I forgot if the comma goes before or after the "and". I had to find another example in my writing to get it right. I have not had any trouble with that before. These things happen all the time. My comprehension and word finding is very difficult at times. Mid sentence I lose my train of thought, multiple times a day. I was able to cope with this after having an 8 hour test that measures the loss of your memory and comprehension. The findings are compared with an average adult my age, with my level of education, a bachelors degree and occupational attainment. I've posted my actual test below.
There is a clear line in my life before and after that 8 hour test. Before the test, Matt and I would bicker a lot. I was still trying to work my own company. I had OCD writing that financial spreadsheet to make sure I was making money. Matt would tell me that I was spending more than I was making. He had to convince himself that it was just my hobby, because I could not grasp what he was saying. My head was spinning and my will was strong. I was determined to make money to help, as my health expenses were ridiculous! I just "knew" I could do this!
I couldn't. I was blind and my strong will was the only thing pulling me. Now the line was about to be drawn. I went in for that 8 hour test and I was frantically late (time became confusing to me). That test was the best thing I ever did. I slowly over the course of that day began to realize my brain was not working right. I grew so weary and it would decline even more. When the test came back, my jaw dropped. In most areas I dropped from 70% to around 30%. In one area I had gone to 1%! There were several others in the teens. So, the line was drawn and that test changed my life forever. My eyes were open and I could see that I had to lay a lot of boundaries in my life. I had to quit my business. But first I had to apologize to Matt! After seeing it on paper, I was able to cope with it. I think it's a lot like the beginning of alzheimer's. Without seeing it on paper, you are trying to convince yourself and others that your brain is well. You get very frustrated when others question your ideas or your forgetfulness. My grandpa couldn't understand why the doctor would take his keys away.
In my experience with illness, the actual evidence has been the most important to me. So when you get all these tests back in the beginning that say you are normal, it makes you feel crazy!! What you learn over the course of years and many doctors is that most doctors only test for basic typical illnesses. You don't realize that when you get blood taken, they are only looking for a few things. When I got 30 vials of blood taken from my most recent doctor, I knew she was the right one. I now have hard evidence of what's going on inside. My mom had to demand my primary physician back in 2013 to take blood for Lyme. It was a simple test, and I was told it was negative. One year later, after taking an encyclopedia of my medical records in a target bag from doctor to doctor, it was discovered from that very same test. Dr. Abidin (he saved mine and my children's lives) braved those medical records thumbing through every paper. He's the only doctor that would do that. He came upon that Lyme test; he looked up. He said calmly,
"You have Lyme."
I can’t work. I have had to set boundaries. I go to church but do best when I’m home. However, even in my home is a daily battle.
Honestly, I can’t even imagine a life without pain, fatigue and suffering. It has become my normal and my family’s as well.