This guest post is by Sarah Mott, RN, Owner nurseborn.com. I would like to thank her for sharing her story with us. It is an intensely personal journey through a mysterious illness.
Finding a Diagnosis
February 14, 2009 started off as any other day, It was my weekend to work. I worked on a heavy, surgical floor, but even so, I loved my job because my co-workers were awesome, the kind of coworkers that would never let another coworker sink – We were in it together. I liked my weekend, we were always having potluck parties on the floor and it was Valentine’s Day, the perfect excuse for everyone to bring in food.
By the middle of the shift, the back of my head and neck started to hurt and as my day went on the pain got worse and worse. By the end of my shift, my pain was 10/10 and I could barely hold my head up. At the time, I did not know this would be my last shift working as a bedside nurse.
I am not sure why I didn’t go to the emergency room, the pain was so bad, I felt like someone was hitting me in the back of my head with a baseball bat. I was stoic and waited until Monday to see the first of the 20 or so physicians that I would see over the next six and a half years. Unknowingly, I was about to embark on a journey of misdiagnosis, excruciating pain, depression, and self discovery.
Looking back, brings tears to my eyes, seriously, maybe it is some sort of PTSD. I am not sure how I survived the pain. I have lost a lot of faith in the medical community, which is a difficult position to be in when you are a nurse. I so badly want you to understand my story, I feel the need to share it and maybe prevent another from going through what I endured, but I am not sure that I can convey it to you….Here is my best shot…
My “occipital” headache lasted continuously for what felt like a month. My MRI was negative and the doctor didn’t know what was wrong and I had to wait to get in to see a neurologist. I had to lay flat in bed without moving, no pillow just flat with the lights out. Pain meds barely touched the pain. I was a zombie. Eventually, the pain decreased and then it would come and go, giving me a few days relief before returning. The doctors did not know what was wrong or what to do. I don’t think they understood how bad it was.
I developed more symptoms: Fatigue, not the,,, I didn’t sleep well last night and now have to work a 12 hour shift type of fatigue, more like; I am wearing 20 lead vests, have been drugged with a sedative and now have to climb out of quicksand type of fatigue. And I thought the headache was bad…well I never could have imagined that it would get worse…I started to have pain in my right ear that felt like someone was inserting a red hot rod into it. This pain was accompanied by serious pain on the right side of my face in my cheek, eye and upper teeth – later in my story jaw pain can be added to the mix. Doctor after Doctor told me that it was a migraine, I knew it wasn’t a migraine. I insisted it felt like nerve pain, they insisted it was not nerve pain it was a migraine and they prescribed all the most effective migraine medications but none of them worked. My fatigue, headache and facial pain would come and go…in cycles. It lasted anywhere from a few days to a week then it would disappear for a week or two and then it would return. It was hard for me to plan anything in advance, some days the pain was mild and I could pretend and on other days I couldn’t get out of bed. It was so unpredictable and didn’t make any sense.
More mysterious symptoms came and went. Migrating arthritic pain in my neck, spine, shoulders, elbows, knees, muscle pain and spasms, pain in both my feet….oh boy it felt like I was walking on glass even when I was sitting down. None of my symptoms fit into the doctor’s little box of symptoms. They brushed my symptoms off; “you have tennis elbow” – uhm…how the hell did I get tennis elbow! or “you are getting older, it is normal arthritis” –Geez, I am not that old, this doesn’t sound right! “It’s menopause, stress, depression” and my favorite “There is Nothing wrong with YOU!” I began to think that maybe I was crazy, was I imagining this pain? Maybe it was my fault that I don’t feel well. Maybe I am living wrong…I have to do more yoga, meditate, eat right, if I live better……
I had short periods of time that I felt well, then I would sink back into the darkness of excruciating pain, fatigue and sickness. I was losing friends, I felt like family members didn’t believe me, our finances were a wreck from all the doctor bills, I couldn’t work. My husband stood by me, but he did not know what to do. My kids suffered because I could not do things with them. I went through phases where I was gung ho to find out what was wrong and I would go to doctor after doctor and then there were times that I just couldn’t deal with going to another doctor and I tried to manage on my own. I pretended to be normal a lot of the time.
In 2014, there was a period of time that I felt a little better, I saw an advertisement for a part time admission nurse position. It was a 4 hour shift. I thought I could do it. I applied and was hired. I didn’t realize how debilitated I was until I started working again. After my shifts I was too tired to make the 5 minute drive home without first taking a nap. I was not myself, I struggled to do my job. Besides the pain, I couldn’t organize things – I had trouble giving medications, I couldn’t put together the sequence of looking at a med order, picking the med and then administering it to the patient. Walking down the hall was difficult, I felt so heavy with fatigue and I couldn’t think. I started having trouble remembering words. I was scared, I felt like I was 90 and worried because my mom had passed from Alzheimer’s Disease. Did I have Alzheimer’s Disease? I had to resign.
That spring, my husband and I ran into an old friend, we mentioned my strange symptoms and we couldn’t believe it when he told us that his sister had similar symptoms and that she had Lyme Disease, an illness caused by the bite from a tiny tick, that is the size of a poppy seed. He gave me her number and told me to contact her. But…I was tested for Lyme Disease and it was negative. Even so, I started researching Lyme and found that the test has a very high false negative result. I also learned that my symptoms were consistent with Lyme. I asked several different doctors if they thought that I could have Lyme Disease. Every single doctor that I asked said “Absolutely Not”. By the end of July 2015, I couldn’t get off the couch. I called our friend’s sister, who is also a nurse and she gave me the phone number of a Lyme Literate Medical Doctor.
I called and made an appointment with Dr. S. After, a two hour office visit that included a complete physical examination and an interview type assessment, Dr. S said that I had so many symptoms consistent with Lyme Disease. I had clinical symptoms that I didn’t even realize that I had, such as balance issues, giant size pupils, loss of tone in my right cheek and swelling at the occipital area of my neck. Blood work was ordered from a specialized lab.
About two weeks later, my test results were in and Dr. S notified me that I was positive for Lyme Disease -Neuro Lyme. As luck would have it, the tick that bit me, also carried two co-infections, Bartonella and Babesia! After receiving my diagnosis, I broke down and cried.
Lyme disease is easy to treat when it is diagnosed early. Late stage Lyme disease treatment is long and painful. Treatment SUCKS! Symptoms get worse with treatment. When the antibiotic starts to kill off the bacteria, toxins are released and the body cannot get rid of the toxins fast enough resulting in a herxheimer reaction or die off – this reaction causes the symptoms to feel 10 times worse. Add in the co-infections and you really start having some fun.
The bacteria responsible for Lyme disease wreaks havoc on your body and treatment consist of killing off the bacteria as well as repairing all the damage that the bacteria has caused within your body. It compromises your immune system and damages your muscles, joints and nerves. Do you remember I mentioned that I had severe ear and facial pain that the doctors insisted was a migraine – well…it turns out that the pain is from a Shingles type virus that was triggered by the Lyme. (without the rash). If you ever treated a patient with Shingles then you know how painful it is … and I didn’t have any pain management. I can’t help but to feel a little bit bitter, I am hoping those feelings will subside as I continue to heal.
So..YAY I have a diagnosis what a relief, but with a diagnosis comes a mix of emotions, Anger, Sadness, Grief, A sense of Loss, Hope and Relief. I move through these feelings in no particular pattern, somedays I am still angry other days I am full of hope. To be honest, I am not sure how I survived the years of pain. When I think about it, I feel a pit in my stomach. I am angry that doctors did not listen to me, they did not put my symptoms together. In the beginning, I wanted to write every doctor that I saw over the years a nasty letter, I wanted them to feel bad, to let them know I was really, really sick and to ask them why they couldn’t or wouldn’t help me. My desire to write those letters decreases a little bit each day. I am thankful that I found answers. I feel grateful for the small things, for the people in my life that believed in me and I am looking forward to the many healthy years that I have ahead. I still have a long way to go both physically and emotionally, But I know that I am moving in the right direction.
Now, I spend my days focusing on Nurse Born Products, the business that I slowly built on the days that I felt okay. Nurse Born Products specializes in selling products developed by nurses. Due to some of the damage that the Lyme has caused, I may never work in the field again. Nurse Born Products allows me the opportunity to continue to work with my favorite people – other nurses. I have met so many amazing nurse entrepreneurs. I love working with my customers. I hope that you will stop by and check out my website nurseborn.com.
Here is a complete list of the symptoms that I experienced over the years: These symptoms would come and go, sometimes together and sometimes I would only have a few of the symptoms. I think I am forgetting some of the symptoms – but I think you get the picture of how weird this disease is.
Facial nerve pain
Right eye pain
pain in my teeth
sores on my tongue
Neck and Shoulder pain
Sensation that felt like my spine was crumbling
hand and finger pain
Extreme hot flashes followed by chills to the bone
loss of tone in facial muscles
red, sore peeling skin around fingers
burning sensation on my skin
painful skin – bruised feeling when touched
Vibrating sensations on my nerves
Restless leg syndrome
feeling “hypoglycemic” without being hypoglycemic
inability to organize task
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