“Houston, We have a problem”. Those were the famous words spoken by the crew on the Apollo 13 when they realized their ship was not equipped to bring them home safely.
Random illnesses, coincidences and unrelated events created an unsavory environment that housed the 3 astronauts who became the ultimate “McGyvers” in space. Unexpected household items such as velcro bands from watches, duct tape, plastic bags, hoses and book covers became the tools necessary for a successful re-entry.
Re-entry is one of the most dangerous maneuvers a spacecraft can perform. Re-entry tests the limits. Re-entry pushes the boundaries. Re-entry is scary, unpredictable and requires all hands on deck.
Re-entry is also necessary for success. Ideas, thoughts, hopes, and dreams can get sent out into the stratosphere, yet their true potential is tested by their ability to withstand re-entry.
Close to 5 years ago, Tami and I sent out own ideas, thoughts, hopes, and dreams into the universe. Random illnesses, coincidences and unrelated events created an unsavory environment for Silver Dawn and the Dementia RAW Project at the end of 2018. A long-needed hiatus from the endless hustle helped both Tami and I to begin to heal.
To begin with, random pains, body aches and inflammation plagued Tami for months. Without a clear answer or medical regimen that resolved the issue, it escalated. Tami was unable to get out of bed some mornings without bursting into tears. Her hips and knees crackled in pain. Walking became nearly impossible. Pain overtook her focus and motivation. It was time for a serious intervention to find a resolution. In essence, Tami’s body was saying “Houston, we have a problem”.
As many of you know I suffer from Mild Cognitive Impairment due to several back-to-back traumatic brain injuries. The randomness of our business schedule started to wreak havoc on my ability to complete topics, keep focus and stay resolute to the goal. This created a breakdown in communication and a sense of depression set in. My headaches were escalating in strength and frequency. In essence, my brain was saying “Houston, we have a problem”.
The coincidence here is that these random health issues were happening to both of us at the same time. Tami’s pain caused her to be less tolerant of my mistakes. My mistakes caused me to doubt my abilities and fall short on many of my responsibilities. Together, we were not equipped to continue at this pace.
I have been chasing symptoms for years. There were weird things happening to me that all the doctors I visited were not able to explain.
Initially, my symptoms led me to believe that I had Lupus. I was experiencing major fatigue, rashes brought on by the sun along with a case of pleurisy and costochondritis.
In the winter of 2018, it became excruciating to walk. I was at a point where my children had to help me up and down curbs when walking the city blocks. I was even unable to go up and down the stairs in my own home. .
My dilemma was two-fold: I was continually having lab work return with “No Findings” which lead to depression and thoughts such as “could this all be in my head?” AND How can I afford more advanced care in hopes of a proper diagnosis?
Thankfully I was connected to a general practitioner that provided me with a referral to a rheumatologist who was open to listening to me fully, regardless of past blood panels.
I was finally diagnosed with Seronegative Rheumatoid Arthritis and amazingly this has given me a new sense of freedom and control. I can even walk 15,000 - 20,000 steps a day 4 or 5 times a week!
I now know that it wasn’t all in my head or because I was lazy or fat. My body was beating itself up and I needed to find a way to help it. After some trial and error, I have found a medication dosage and diet regime that is working for me and I have developed a new way to look at self-care.
“Something is just not right,” I told my husband, “I am slipping and it is becoming dangerous”. After sharing some scary events including several incidences of leaving the stove burners on while going for walks, forgetting to put a timer on for food that eventually burned and set off smoke alarms along with a loss in my sense of smell, he suggested that I revisit my neurologist for more testing. It had been about 4 years since my last battery of exams had established my own personal baseline. It was now time to see if I had slipped below my baseline and then determine why.
First I started with neuropsych testing. Several hours with random test components determined that I was suffering from recall, long term memory loss, and focus/ attention issues despite my best attempts. There were also findings of “slower than average” processing speed that was not related to my hearing, but how my auditory processing system integrated information to the proper channels within the brain. Essentially I had the processing speed of an average 80-year-old.
As it turns out, some of the structures of my brain had changed over the past 5 years and I was currently suffering from some white matter lesions and a condition known as “Empty Sella”. Essentially the Sella is a structure of the brain that houses the pituitary gland. My sella was filled with cerebral spinal fluid and putting immense pressure on my pituitary gland causing the increase in migraine headaches and a minimally functioning pituitary.
Knowing what is wrong has helped me feel control over what is happening. Not much can be done to reverse any of my conditions. I now take medications for the migraines and a regimen of vitamins to combat the insufficiencies. My doctors are currently in the talking phase of hormone replacement therapy as well. At this point I am at a Flight pattern of “Watch, Wait and See”.
So, here we are. Ready and stronger than ever. We have learned the value of listening to our bodies and responding to their needs. We have been out in the medical fields, searching for guidance and help, willing to take what we could get just to be pain-free for a day. We have seen our concepts used in some situations and NOT used in others. This has only fueled our desire to get back into the arena, as Brene Brown, would say and prepare for our next adventure. “Houston, we are ‘A Go’ for Launch.”
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