Basic Stuff

• Name: Mima
• Country: United States
• State: Arizona
• City: Phoenix
• Gender: Female
• Education: Four Year Degree
• Primary Illness: Post Treatment Lyme Disease Syndrome (PTLDS)
• Diagnosis:
  • Chronic Fatigue Syndrome (ME/CFS)
  • Fibromyalgia (FM)
  • Postural Orthostatic Tachcycardia Syndrome (POTS)
  • Neurally mediated hypotension
  • Irritable bowel syndrome
  • Small intestinal bowel overgrowth
  • Migraine
  • Environmental Illness (EI)
  • Mast Cell Activation Syndrome (MCAS)
  • Bartonella, tularemia, babesia, MCAS, ehrlichia, anaplasmosis, autoimmune
• Year Illness Began: 2016

Functioning Interrupted

Most Impactful Loss

My biggest loss was my zest for life and independence. Most heart wrenching is the fact that my older child has seen his mother reduced from a vibrant, enthusiastic, adventurous woman to a weak shadow who moves slowly around the house. My daughter has never known me healthy.

My Story

In 1998 I travel to Phoenix, Arizona, where I was provided a full doctoral scholarship to study marriage and family therapy. I transitioned to Phoenix Police Department where I worked as a sworn officer for over 20 years. During my career, I received an employee of the year excellence award, officer of the month and numerous other commendations and awards for my service to the community. I loved working as a law-enforcement officer, and I loved meeting people on their worst day and trying to make it better.

Simultaneously, I was a single mother to two children. When my daughter was born, I was healthy and up backpacking and hiking with her and my son shortly after her birth. In 2016, I was working as an animal Crimes, Detective and I responded to a crime scene with over 1000 sick, injured and ill animals. I contracted 8 zoonotic diseases and fell ill with 105 fever and progressive decline in health.

My fatigue was so severe, I thought I had cancer and I began going to doctors trying to get properly diagnosed. I went to the Mayo clinic and they suggested that I was just tired. I was so fatigued even after sleeping 10 to 12 hours a night that I would fall asleep, standing up while talking to somebody or at a standing desk at work. In 2017, despite being very physically fit, I failed my cardiovascular stress test and my muscles were not oxygenating .

I still was not properly diagnosed, and I began to take Adderall by prescription in order to function, and even after taking Adderall, I could fall asleep if I was sitting down talking to somebody. I was not properly diagnosed until 2019 when it was found that I had 8 tickborn infections, and soon after I almost had heart failure and liver failure, I was hospitalized at Mayo clinic.,

I developed MCAS, chronic fatigue, syndrome, POTS, dysautonomia, and a variety of debilitating symptoms. I continued to work , however, my fatigue was debilitating and I was forced to take the maximum dose of Adderall in order to continue providing for my family.

I would complete my shift at work, and then go to my vehicle in the parking garage to sleep before picking up my children from school. I had depth perception problems, balance and visual hallucinations with color and debilitating migraines and neck pain, and memory loss. In 2021, I developed Bell’s palsy, TIA? and a number of neurological and visual disturbances.

I was forced to stop working , and became completely dependent upon my family for financial assistance, as well as I was forced to withdraw money from my retirement accounts. I have developed type 1 diabetes, connective tissue disease, cranial cervical instability, and have chronic neck and back and joint pain. My migraines are severe. I have migrating joint pain. I do not feel restored with sleep and when I sleep for hours I wake up feeling unrestored. I lack energy to exercise, but even when I try to walk, my muscles feel immediately fatigued, and, my joints hurt the entire time.

I have PEM am a candidate to have bilateral jaw replacement surgeries as joints deteriorated. I’ve got scoliosis in my back in 2 places now and progressive degeneration of my cervical vertebrae. I still experience dysautonomia, orthostatic issuesmigraines with aura and nausea . I struggle with severe G.I. issues.

In 2023 I was diagnosed with central midline shift disorder and have been going to physical therapy and rehabilitation for my brain and Neurological and visual processing. I also go to physical therapy for my neck and back. I’ve been prescribed physical therapy for my severe knee pain, as well as hip therapy but I lack the energy to be able to go to more appointments each week finding that I am exhausted.

I am two years behind in filing my taxes because I lack the energy to do them and find the materials. I also am trying to file for disability, but I find the paperwork to be too overwhelming and difficult to understand never mind the years of doctors appointments and records that they want.

At different points in time my family has hired somebody to come and help me but it’s only a temporary patch. I have to have somebody come weekly to clean the house because I cannot keep up with the demands due to energy deficits. I still would benefit from additional treatment for the tickborn illnesses, which seem to be still active, but I lack the funds and the motivation and energy to proceed.

The only thing that keeps me going each day is the love I have for my children and the knowledge that they need me and I must do my very best to be here and be as good as I can for them because I do not know how long I have to live and I know how important it is for children to have at least one caring parent who is there for them in every capacity possible.

I miss my friends and having normal conversations but my social network has become very small because I don’t want to be a negative person and bring other people down and quite honestly people look at me and say that I look fine or they downplay and minimize and say oh everybody’s tired.

The worst is the medical gaslighting by the traditional medical doctors. I’ve been to Mayo numerous times, and I find them to be very dismissive of my symptoms, and several doctors have said things like everybody’s tired. When I did sleep studies I was diagnosed with idiopathic hypersomnia. I still can fall asleep, while a friend comes by to visit and is talking with me on the couch , I used to love to read and was an avid reader, but I cannot read anymore because when I read something I forget what happened in one paragraph later!

Most alarming, I forget the names of people that I know very well names of things and places and my short-term memory is impaired. I brought this to the attention of doctors, but I am dismissed and told that I’m either depressed or not sleeping enough or I’m aging . I am concerned that I am developing some sort of dementia. I had biopsies done that show that I have high alphasynucleopathy. I am mindful of that.

When I went to Mayo in desperation in 2018 they did infectious disease testing on me and I came back with active infections for brucellosis and tularemia despite that the ID Dr. did not even think about treating me, and did not even give me a proper diagnosis or ask me to come back to his office. I messaged him telling him I felt each day that was dying I was so fatigued and feeling so sick with swollen glands etc. He referred me to my primary who had no answers.

I ended up going out of state to California to see Dr. David Lyons Kauffman the first doctor, who finally took me seriously at the Center For Complex Diseases. I continue to see him as I can but finances are very difficult. I had saved a good amount of money during my career to take care of myself and my children during retirement, but I was planning on working for another 10 years, which is not possible.

The saddest thing for me is my daughter was born in 2013 and I got extremely sick in 2016 and she has no memory of me as a healthy, vibrant, adventurous mother who used to do all kinds of fun things. I was very independent and self-sufficient and I took my son on trips out of the country to see the world .

Now I’m lucky if I can drive a couple miles and take them to play with a friend. I was a mentor for a girl from a very rough background, and I provided mentorship and volunteer services in the community. I am losing my medical insurance.