It’d been two years since we vacationed with our besties in Chicago. Even though it’s tough to find a time that works for everybody, we were determined to get together this year! I found an affordable Vrbo that would accommodate our group of 12 about 1/2 way between Chicago and Detroit in a little town called Lake Odessa. The rental property sat on the lake and for an extra fee we were able to rent their boat. Although the lake itself wasn’t the cleanest, we didn’t care. We had a great time just driving around, listening to music and being out on the water. It was so freeing and relaxing!
The kids enjoyed sitting together and playing old-fashioned board games and in the evening we all played Cards Against Humanity and had a blast. I must admit I love playing board games and it reminded me of childhood before the time of iPads and iPhones. Our “resident chef” 👨🍳 even made homemade pizzas one night that were to die for!
It was so nice to enjoy the long, relaxing weekend with my best friends and our families. We committed to doing something together every summer. Life is too short and we must enjoy it while we can!
One Cool DudeLife
Born too Late — Died too Young
As little kids we would dance on the living room orange shag carpet to the music of the Fats Domino, Chuck Berry, and Elvis Presley
Jim and the neighborhood boys would hide behind the garbage cans and shoot dry peas through straws as cars drove by
He dressed up as a girl for Halloween and the boys at the roller rink thought he was a HOT teenage babe — he was mortified!!
He introduced me to the CLASH, HENDRIX, the STONES and ZEPPELIN
He was a great dancer 🕺🏻
He enjoyed impersonating Elvis — and looked and sounded the part!
A plaster bust of Elvis sat in the rear window of his cool 1960’s baby-blue car
Jim was very handsome and tried his hand at modeling
He LOVED to work on and race his 1969 Orange Dodge SuperBee
Among the car circuit he was known as KidSixPack
He was a top salesman at Gorno FORD
His basement was a shrine to all things “Retro Cool”
Jim was loved by so many — and made fast friends wherever he went
He had an enormous heart and rescued a family stranded on the side of the road one snowy Christmas Eve
He loved to vacation in the warm Southern sunshine and be outdoors in nature
He loved his dogs and grand-dog Sasha
He loved his family, especially our Mom and his two beautiful daughters
Jim had a “tough” childhood — he struggled with self-esteem issues all his life
He was diagnosed with Type I Diabetes as an adult and received a liver transplant
His kidneys were completely shot
Jim also had IBS & other Autoimmune Diseases
He was a sitting duck when COVID-19 came knocking
He spent 4 months in the ICU including his Wedding Anniversary and Birthday
It was because of Jim that families were allowed to visit their loved ones with Covid-19 in the hospital — his final good deed
He is missed every single day!
🦋 FLY BROTHER — YOU ARE FINALLY FREE! 🦋I Love You
🎸 ENJOY THE MUSIC 🎸
Your Little Sister
James Robert Bowman 5.10.66 — 7.22.21
CaliforniaLife, Photography, Travel
Every summer, we try to do a nice vacation. And since COVID had begun we hadn’t gone anywhere out-of-state for a couple years. So this year, once things were safer and we were all vaccined-up, we chose to spend 10 days in California! I was able to find us a nice cute condo to rent in Beverly Hills complete with an adorable balcony and a small private pool for swimming.
Traveling for me has gotten progressively more difficult. Even with all my joint replacements, I still have a lot of pain. I think people forget that. I have limited stamina and can only walk for short distances before I’m done for the day. My idea of a perfect vacation would be lounging by the pool/ocean by day with cocktails in hand. A short nap, luxurious bath, followed by a delicious dinner and dancing under the stars into the wee hours with a bit of sight-seeing/engaging in the local culture thrown in. (Universe, if you’re reading this…hint…hint…)
We had worked out prior that sometimes I would just hang back at the hotel or spend my time locally while my boys did their “boy” things. At other times, we would explore Cali all together. While the guys were out at exploring Rodeo Drive or the high-end car market, I lay by the pool or explored what was right around us. I discovered the famous Kitson was only a couple blocks away. I fell in love!! From their website, “Proclaimed as a celebrity hot spot, Kitson LA is the go-to fashion and lifestyle boutique dedicated to pop-culture and created for fashion enthusiasts around the world.” Some of my favorite things were the F@CK merchandise. Sorry Mom, but you know it is my favorite word. ;0
Together we drove up to Mulholland Drive and went to the lookout. For Bharat’s birthday we ate at the world-famous Spago. I’ll be honest, the food wasn’t that great and was waaaay overpriced. One day we drove up the coast to Malibu and spent some time there. And of course we visited the Hollywood tourist spots. All-in-all it was a nice vacation; but I’m still dreaming of that luxurious Ocean get-away~~~
Canadian Soul SistersHealth, Life, Spirit
In between my knee surgery and our home renovations, I found the time to continue on my spiritual quest. After my last session with Diane Hiller, she recommended Bridget Saraka, Canadian Feng Shui Expert and Intuitive Practitioner.
Bridget’s website is amazing and her social presence is just beautiful. She shares so much of herself, opening her home and her life to others via photos and stories. Although Bridget presents herself as a Feng Shui expert, which she is, she shared with me that her main focus — most of her work — centers around Soul and Space Clearings, which is what I sought her out for. On her website, Bridget states that…
After poking around her website for a while, I wanted to know more. Her point of view deeply resonated with everything I truly believed and echoed several of the teachings I had been learning about. The first call we had was a “discovery“ phone call to see what I was interested in and if we were a good fit to work together. I immediately liked her warm and welcoming demeanor, like somebody I had known for a very long time. She was the first person along this journey that I really felt a connection with. And the Canadian prices were so reasonable to boot! Eh?
In our exploratory session I shared with Bridget how I was feeling: physically broken, emotionally beat-up and energetically depleted. That no matter how positive I was, or how much I tried, life seemed to be a series of two-steps-forward-five-steps-back. I explained that things had come to a head for me and I was feeling extremely defeated and lost. I needed answers.
Bridget was the first person that introduced the phrase Dark Night of the Soul to me. Eckhart Tolle calls it, “a kind of re-birth. The dark night… is a kind of death. What dies is the egoic sense of self. Of course, death is always painful, but nothing real has actually died — only an illusory identity… Some people who’ve gone through this transformation realize that they had to go through that in order to bring about a spiritual awakening. Often it is part of the awakening process, the death of the old self and the birth of the true self.”
Bridget explained that as a collective, we were going through a massive shift in energy, on our way to an up-leveling of consciousness, and that many sensitive souls were feeling the shift not only in their personal lives but in the greater humanity as well.
She was also the first person who introduced me to the idea of a Light Worker — a soul who shines their light to assist the collective, as we rise out of the third dimension and into the fifth, ascending into the next level of consciousness. I wondered out loud if I might be one of these “light workers?” Bridget replied, “Of course you are, or we wouldn’t be having this conversation!”
Over the course of five months I worked with Bridget and learned so much from her! She performed a couple of Soul Clearings for me and a Space Clearing for our home. We had mentoring sessions where by she answered my gazillion questions with humility and grace. She recommended Dr. Joe Dispenza’s book, Becoming Supernatural: How Common People Are Doing the Uncommon. An amazingly profound book that combines neuroscience, epigenetics, and quantum physics together and teaches you how to shift your awareness beyond the material world into the quantum field to enable profound healing. It’s a doozy — not for the faint of heart — I loved it!
Bridget intuitively recommended Cranial Sacral Therapy for my neck/shoulder tightness. I had heard of the therapeutic light touch method but had never tried it. Later, in the Fall I would find a local practitioner who was wonderful!
During our time together, I felt as though I was talking to an old friend. Actually, she reminded me of one of my dearest friends. Sheila was a colleague, a mentor, a teacher, and someone I really admired and respected. Both ladies are about 10 years my senior and are red-haired-Irish-Canadian with a bit of an accent! In writing this I just realized that both ladies came into my life at the exact time I needed them: Sheila when I was 22 and beginning my career and life as an independent young woman and Bridget when I was beginning my Soul Searching — both mentors, teachers and strong wise women to help guide me into the next phase of my life. The fact that they vibrate at the same energetic frequency — one that I was drawn to and deeply resonated with — is proof to me that we were destined to meet and that they are both part of my Soul Tribe — My Canadian Soul Sisters!
In April of ’21 we FINALLY updated our 1980’s OG bathroom. You know the look. I can almost hear the builders, “Hey, let’s just use whatever we have left over from the 70’s that nobody wants anymore; beautiful limeade green and white with basic $10 fixtures, a rusty medicine cabinet and a giant mirror that can’t be cleaned without a step stool; we’ll even through in some ugly-ass light fixtures for free!”
While the basic white tub had seen its share of joyous bubble-filled baths for the boys and an occasional candle and wine bath for momma — it was due for a major upgrade! Of course these things rarely go off without a hitch — and we had our share of hick-ups, but when it was all said and done, the final product was beautiful and we were very happy with the result.
Next, it was time to tackle the kitchen. We opted to have the old outdated formica countertop replaced with beautiful marble and had the cabinets refreshed with a two-tone medium/light grey to match our cat Zoe. JK! But look how cute she is sitting on the new marble countertop! For the finale, we had our entire home painted a neutral grey tone — we had caught the Griege bug!! — with pops of darker grey accents. Again more hiccups/delays would be the norm, but in the end it came out beautiful!
A Pain in the Neck, Vaccines & 12th SurgeryHealth, Life
As I sit down to write this post, I’m wondering, ‘How do I segway from writing about my spiritual awakening/ journey to writing about the day-to-day Bullshit of “real” life? ‘
Then I thought of that funky song from the 80’s by Soul II Soul ~~
Back to Life,
Back to Reality,
Back to the Here and Now…
So, on that Note..
After my Neck Fusion in 2020, the surrounding muscles/tendons/ligaments/fascia of the right neck/shoulder/upper back continued to ache and feel like a tightrope. This was one reason why I had the surgery in the first place; hoping to alleviate some of that constant pulling/taught sensation. Unfortunately, it was not any better and possibly worse now, due to the restricting movement. The surgery had helped with the numbness and tingling extending through my right arm and a little bit of pain but the surrounding tissues were still extremely sore.
During the Spring of `21 I found myself at appointment after appointment trying to find some kind of relief. I tried Acupuncture with mixed success: only the first treatment was wonderful, after that– nothing. I went to a wonderful Chiropractor for a few months (and consequently, discovered the amazing NYC Halal Eats whose Lamb & Rice Combo is TO DIE FOR!!!) Dr. Noomie did very gentle work to align my upper and lower spine, hoping to alleviate some discomfort. I felt on Cloud 9 after a session but the feeling didn’t last too long and eventually I stopped going. Same with Medical Massage — it felt incredible for a few hours, but never lasted! I even resorted to Neck Injections — again! All of these modalities provided a small bit of temporary relief, but nothing lasting. So I continued on, living in pain…
As soon as the COVID-19 Vaccine was available for medium-risk 50+, I jumped on board. Although I’m not officially in the high-risk “comprised” community, I couldn’t chance getting the virus given my situation. As soon as they were able, my husband and sons received the vaccine as well.
In May (just as Diane Hiller, medical intuitive had predicted) I had my 6th joint replacement/12th surgery (not including two c-sections); for the injured knee that had been “loose” since I was a kid. It had finally begun to really hurt and made stairs or any amount of standing/walking vey painful. When it came time to have it done, I went to one of the best orthopedic surgeons — Dr. Perry Green. I had met Dr. Green 22 years ago when he performed my very first joint replacement in 1999 — my left hip shown here, which is still going strong to this day! You can also see my Lower Lumber Fusion – 2010 also going strong!
The operation went perfect. I had a nerve block so that my entire leg was pretty numb for the first 24 hours or so resulting in minimal pain. I stayed in the hospital one night and recuperated at home. The hospital sent a Physical Therapist to my home for the first week to teach me the various exercises to ensure my knee did not stiffen up. I did my exercises diligently and eventually made a full recovery with wonderful range of motion and almost no pain! Once the incision was fully closed, I applied my THC/CBD cream which helped with post-surgical pain and scar healing. Now, the incision is barely noticeable. I’m able to walk and do stairs without any pain now. However, after being active for a while, it starts to swell a bit and gets a little achy. Just my reminder to sit down and take it easy!
DianeHealth, Life, Spirit
For the next stop along my journey, I was interested in meeting with someone who could provide more insight into my medical issues. I went back to the Best Psychic Directory and this time I focused the search for a medical intuitive and booked a session with Diane Hiller.
Since Diane lives in Connecticut, the appointment was held via zoom. I learned that it doesn’t matter if the client is present because it’s all about the energy and a gifted psychic or intuitive can tap into your energy, with your permission, from anywhere in the world. According to the Best Psychic Directory, “during a reading, the medical intuitive will scan your body to see where there might be subtle energy disturbances that often lead to physical pain or ailments.”
The process began by my stating out loud, “I give you access to my energy field” and then I took three deep breaths. She then virtually scanned my entire body, sort of like a virtual MRI. Almost immediately, she picked up on various colors around my body: the colors are her map to what’s happening. She saw the pain in/around my neck, my malfunctioning immune system, my hormone issues, as well as my sadness. Next, she offered several recommendations, based on what she had gotten intuitively and from our conversation.
- Check out Genomemedical.com — a website that offers a variety of genetic testing
- Testing for the MTFHR gene mutation — a gene mutation that inhibits the body’s use of Folate, which sets off a chain reaction of serious health problems that often lead to a myriad of diseases, including autoimmune and depression
- T3-T4 thyroid testing
- Hormone Panel — Blood test to determine the levels of Estrogen and Progesterone
- Deplin therapy — capsules containing an active form of Folate used mainly for depression
- DHEA, D3, Iron, Omega 3 and Turmeric Ultra Supplements
It was evident she was spot on, but I was a bit confused about the diagnostic testing she was suggesting. While I diligently took notes, my mind was feeling a bit of a disconnect; although her ability to “see” my challenges was amazing — I started to doubt if this consultation would be beneficial at a Soul level — which was REALLY what I wanted.
That being said, I believe the majority of my mood issues are directly related to my chronic illnesses and related situations. However, my family does have a history of some mental illness on both sides, so there may be a genetic component as well as the ancestral imprints handed down through the generations. Later I would learn about epigenetics or the scientific finding that genes are not hard-wired but can be and are modified by our environment, both externally and internally, including our thoughts and beliefs; think “Nature vs. Nurture” on steroids. Through my own studying and research I’ve come to understand that it is all intertwined and interconnected.
In 2009, I had extensive thyroid testing, when I began having hot flashes at 39 years old. My levels were “atypical” due to my underlying disease and medications — particularly Prednisone, for which I have been on a low dose for many, many years. Also, as a result of taking Prednisone for so long, I have Secondary Adrenal Insufficiency. This is when the pituitary gland does not send enough hormone to the adrenal glands resulting in low levels of cortisol; an important stress hormone. Therefore, in times of bodily stress, such as a car accident or a surgery, I receive extra Prednisone or my body may go into Adrenal Crisis which can be fatal.
In the end, it was determined the hot flashes were due to Perimenopause which I experienced for 11 years before starting Hormone Replacement Therapy (HRT) at the end of 2020. As far as the supplements, I take a multivitamin with Iron daily along with a myriad of other prescriptions and at times I’ve added D3 and Omega 3 to the mix, just not consistently.
After the “MRI” scan, I asked her about having another neck surgery to which she answered, “Yes, but put it off til Fall.” (It was later scheduled for Fall!) I asked about my knee — the one that flops back and forth and was hurting more and more, especially with stairs or after walking a while. She said I’d have the surgery sometime around April or May (I had the surgery May 3rd!) She recommended Pool Therapy — now THAT was one suggestion I could whole-heartedly adopt!
After focusing on me, she scanned the environment (our home) and could feel the tension/stress and the energies of my family. She suggested I pick up some Raw Blue Kyanite and Obsidian crystals to help me stay grounded and protect my energy, hence began my interest and education of crystals. She also recommended that I get outside into nature as much as possible. Little did she know, I am a nature lover! She suggested Bergamot, Lavender, and Vetiver Essential Oils (three of my favorites) and the practice of Opposite Nasal Breathing as a calming and centering tool. I was also pleasantly surprised to hear that I have several spirit guides around me.
I explained that I was trying to get to the bottom of my “medical mystery” and that my quest was more of a spiritual nature — more a Why and less of a How. I was hoping to tap into the Cosmos and get the “backstory”, the karmic reason for my health challenges and struggles. To this point, she recommended a colleague of hers, whom she had worked with personally; a gifted intuitive healer that might be able to provide me with some answers. Onward and upward…
After doing some searching, I stumbled upon a website called Best Psychic Directory. I know it sounds very cheesy, but after looking around the site for a while, I decided it was my best chance. I filtered my search by experience and reviews and read many bios. In January 2021, after a few stops and starts, I connected with Gayle Kirk, a psychic medium from North Carolina.
I met with Gayle via phone. I shared with her a little bit about how I was feeling lately and what I’d been experiencing. She took a few minutes to “connect” with spirit and then communicated what she was sensing. Immediately she connected with my maternal grandma — whom I knew and felt around me in spirit. We were very close and I have such fond memories of her and my time Up-North while growing up.
A photo of Grandma “Millie” at 15 years old sits on my alter and as well an angel she had bought for me years ago. Grandma loved birds and was always whistling away while cooking the best home-made meals in her tiny kitchen or doing the New York Times crossword puzzle out on the covered porch while having a cigarette. This is how I still see her today in my minds eye.
One day – after I had started to connect with her more in spirit, I was driving mindlessly and all of the sudden I smelled cigarette smoke in the car. The windows were up and none of us smoke. I instantly knew it was her — going along for a ride with me! She sends me beautiful red cardinals also. Several times over the past couple of years, if I’m having a particularly difficult day, I’ll look outside my kitchen window or out the bedroom window and there he is — all alone — just sitting in a tree. I know it’s my Grandma stopping by to say, “Hey, it’s gonna be OK Jenna and I Love You!” — I know she is one of my Heavenly angels!
Gayle was able to pick up on some of my familial and ancestral patterns and also tapped into some of the challenges I was having at home and that we were having with our teenage boys. She was able to see that I was digging myself out of a rut: both psychologically and physically. Regarding how I was feeling toward my body and my health circumstances, Gayle provided these powerful nuggets of truth:
- You don’t have to continue to live life this way — it’s a choice
- Befriend your body — begin to love and forgive it
- You don’t need to be sick to be loved
- I am not a victim of my circumstances or body
- This is not Karmic punishment
- Choosing not to participate in life is a subtle type of suicide
- Suffering is Not a Requirement on the Path to Joy
- I am here to learn how to own and use my Power
She also recommend a couple books, Louise Hay’s You Can Heal Your Life and The Power of Now by Eckart Tolle. Louise’ message is all about the power of your thoughts and words and how they can impact your life. She has been called “the closest thing to a living Saint.” Louise passed in 2017 at the age of 90 — but her legacy lives on in the non-profit humanitarian Hay Foundation she created in 1986 in response to the AIDS epidemic. In 1987 Louise began Hay House company whose mission is, “dedicated to supporting positive change in the world by helping all people to grow in mind, body, and spirit.”
Eckart Tolle has been described as “the most popular spiritual author in the United States” and “the most spiritually influential person in the world”. His teachings focus on Presence or the awakened state of consciousness that transcends the ego. He sees this awakening as the essential next step in human evolution.
To assist in my climb out of that deep dark hole I had sunken into, I decided to turn back towards Spirituality to aid in my search for answers and perhaps some healing. But, let me back up here and give you an overview of my non-religious upbringing.
My Mother’s parents were Polish Catholic. They went to church regularly and she attended Sunday School taught by Nuns who put the fear of God and Hell in her as a little girl. My Father’s parents had come from the South and were Baptist. However, I don’t believe Dad was raised going to Church. I was baptized in the Catholic Church but don’t remember attending church. My parents had a falling out when my brother and I were very young; after which we never went back.
My parents divorced when I was ten; it was 1980 and the “New Age” movement was all the rage. My mom, fresh off divorce, and tired of the strict ideals of Catholicism that she’d been raised in, began seeking other forms of “religion.”
Mom successfully consulted the Ouija board to find missing items — from the precious porcelain Easter egg ornament (but that’s a story for another day) to my beloved pet hamster, Rusty Wayne Newton III, that had escaped from his cage when I was 12.
During Middle and High School mom introduced me to several spiritual books. Some of my favorites were Illusions, Jonathan Livingston Seagull, and One by Richard Bach. He was probably my first introduction to Spirituality.
Then I read Shirley MacLaine’s books and Linda Goodman’s Sun Signs and later Star Signs, James Redfield’s The Celestine Prophecy and The Medicine Wheel: Earth Astrology by Sunbear and Wabun Wind. For a gift one year I received a beautiful Onyx black bear with Clear Quartz crystal on his back. I still have him today — he sits on my altar.
In college, for my Psychology degree, we had to select an adjunct area of concentration and I chose East Asian Cultures. My favorite class was Eastern Religion where we studied about Hinduism, Buddhism, Taoism, etc. We read, Autobiography of a Yogi by Paramahansa Yogananda, one of my all-time favorite books for which I still have my beautiful worn collegiate copy. I also took several courses in Chinese History and Culture and the ancient Japanese Arts.
For Christmas during this time, Mom gave me a statue of two little Gurus smoking pipes and reading books. They join Black Bear on my altar.
Growing up, Mom and I consulted with a local astrologer and had our birth charts read. ‘Jerry’ described me to a T and I became hooked — I was enamored with the science of astrology. I love how it weaved the left brain sciences of mathematics, astronomy and physics together with right brain creativity, art, and intuition.
Later, as a young adult, I took a few classes in the evening at the nearby high school through a local astrologer. We learned the basics: signs, planets, houses, aspects, and an introduction of how to put it all together. I acquired books on the planets, astronomy, and even tipped a toe into Stephen Hawking and Quantum Mechanics. I’ve since accumulated probably 30 books on Astrology over the years and have been studying it on and off for as many.
In January 2021, when I decided to look for Spiritual Guidance, I did what everyone does nowadays and consulted the “Almighty Google”. I had no idea where to look or even what to search for, I just knew that I needed to start somewhere and find someone with an intuitive connection to the universe; someone who could possibly provide some insight as to why my life had been so damn difficult, someone who could help me learn how to heal and provide a hand up and out of the dark place I had been in for so long. Thus began my Spiritual “Reawakening.”
Hello God Are You There? It’s Me JenHealth, Life
By the end of 2020, I was deep down the rabbit hole of self-pity and depression, as mentioned in my previous post, Dark Night of the Soul. I needed to get help. Months prior, my rheumatologist had given me the name of a social worker who was also her patient but I hadn’t called.
I hate starting with a new therapist. I had tried it years ago when the boys were little. But it wasn’t helpful. It’s difficult finding a therapist that I like that has experience treating a person like me — with a life-time of chronic illnesses that affects your mental, physical and emotional being; not to mention how it influences all relationships — especially marriage, children and maybe, and most importantly, the relationship to yourself! Could they understand why you act selfishly, always protecting; in that fight-or-flight mode? Why you may get defensive very easily because you feel constantly under attack, internally and externally, and misunderstood by everyone. Can they help with your loneliness and difficulty relating to peers, even your closest friends, because it feels like they live in a completely different world? Can a therapist understand how these diseases have shaped me so profoundly and impacted my every choice, decision, action, every single day of my life?
Let me back up and give you some history of my journey, so that you may have a better of understanding of why I was so painfully depressed
I was diagnosed at age 2 with Juvenile Rheumatoid Arthritis after a week long stay in the hospital, upon complaining that my legs hurt. In 1972 parents weren’t allowed to stay with their children so I was alone most of the time. I was told that they had trouble finding a good vein (a challenge to this day) so they used my neck.
Fast forward to my earliest memories with this disease. Grade school was extremely difficult — by the time I was five years old, the JRA was attacking my ankles and knees mostly but would eventually attack every joint in my body and I hurt all over. I’d wake up extra early to soak in a steaming hot bath and take medication every single day and night so that I could function. I couldn’t walk the two blocks to school with my classmates because it was too far. In gym class, I had to sit on the stage and watch everybody else have fun and play. I couldn’t sit on the hard gym floor during assemblies so I took a seat on the sideline with the teachers. I hurt so much that I couldn’t make it across the field to the playground and had to hang out by myself or with the teachers who never provided me a seat because they were unaware. I couldn’t focus on school work and felt so different than all the other kids. I couldn’t walk home from school so I’d wait up to an hour sometimes in the office for the cab to pick me up because both my parents worked and the taxi company had forgotten me.
I missed a lot of school because of doctor appointments and suffered through countless blood draws of tiny veins that rarely cooperated. I learned how to “read” x-rays by the age of 8. Monthly gold injections became the norm and enormous needles drained my giant swollen-grapefruit-knees. There was often PT with endless lists of take-home ROM exercises to keep my joints from freezing up, which I hated, and rarely completed. It was difficult to play with neighborhood friends; to keep up with them on a bike, to play hide-and-seek because I could never get away fast enough.
The world was a very lonely place. I spent a lot of my childhood alone, inside and by myself. I had a lot of time to think and I pondered the big questions about life — the type of things that most people don’t even begin to question until maturity — if at all. I viewed the world as unfair, uncaring, unknowing. I felt so isolated, sad, angry and depressed. I questioned why God would allow a child to suffer so much…
Thankfully, by middle school, the active inflammatory JRA finally quieted down a bit and I was able to have some fun, make more friends and just be a kid. However, the damage caused by 10 years of the disease had begun to take a toll on my joints and this part of the disease — the breaking down and eroding of cartilage and damaging bones and surrounding soft tissues — continues to this day. My first surgery was at age 12 for a loose knee-cap. The surgery didn’t work and that knee-cap slid back-and-forth for 40 more years until I finally had it totally replaced. My second surgery I was 15 and a sophomore in high school. I woke up one morning and couldn’t move my left ring finger; the arthritis had eroded my wrist which severed through the tendon causing my finger not work anymore.
My freshman year in college I fractured my calcaneus, or heel bone, from walking too much. On the up side, I was allowed to have a car on campus. That’s when I obtained a handicapped placard — at the ripe old age of 18!
When I was 29, and newly married, my left hip started locking up and causing excruciating pain. There was no more cartilage left and it had to be replaced. That was my first joint replacement, a total hip, which is still going strong 23 years later (touch wood!)
When I was 33, and pregnant with my first son, I contracted Viral Meningitis and was taking Vicodin (per my doctor) so that my head would not explode. Two months later we found out there was something wrong with our baby. After several blood tests and ultrasounds it was confirmed that he had a neck mass. During the remainder of the pregnancy, I had countless ultrasounds and MRIs. Thankfully the mass was growing at the same rate as him so I was able to proceed with the pregnancy. Two weeks before Dylan was due, our hospital told us they wouldn’t deliver him because we were too high risk and were transferred to U of M where we knew nobody. At my 40-week check up they noted his heart rate dropping, admitted me and began Pitocin. I labored painfully until dilated to a six before getting an epidural.
Eventually his heart rate dropped again and they performed an emergency C-section. The cord was wrapped around his neck three times and he couldn’t breathe because the tumor encroached his airway. He was whisked away immediately and intubated. Baby Dylan had life-saving surgery at five days old. He stayed in the NICU for three weeks until we could finally take him home. During that time we stayed at the adjoining hospital hotel while I recovered from the C-section and was pumping breast milk around the clock.
During the first year of his life we fought to keep his weight up because he couldn’t latch on and had difficulty sucking from a bottle. We did local occupational therapy and had many trips back-and-forth to U of M Hospital. In the end, he pulled through everything like a champ but by October I hit bottom and fell into a delayed postpartum depression. I began taking antidepressants and slowly came back around, but my challenges would continue. Dylan had two more surgeries by the time he was five; one to remove the rest of the tumor and the second to close the gap left behind in the pharynx. He had many years of speech therapy, some occupational, then later vision therapy.
I am so happy to report that he has become an exceptional young man; brilliant, caring, and kind with a gentle soul. I know that although he had a very difficult start in life, he is meant to be here and will help to bring positive changes to this world!!!
When Dylan was about two-and-a-half, we started trying for another baby. By this time I was considered “old” at 37 so I had to undergo genetic testing. Plus, we wanted to understand the odds of having another baby born with challenges. As soon as we had the “all clear” I had a spontaneous miscarriage. Then a second at 10 weeks along and I was heartbroken. We had heard the tiny heartbeat and we were so happy. I had a scheduled D&C and we never found out the sex of the fetus — it was too sad.
Ethan Michael was born via C-section in February 2007. He was healthy and adorable with a full head of hair – just like his big brother. I had gained about 30 pounds and was “all baby”. However, the strain on my lower back was excruciating and I asked my Doctor to please deliver him as early as he safely could. Ethan’s start in life was so easy — he slept really well and had a voracious appetite. At his 1-year check up he was 30″ and 30 pounds!! He was the happiest little (big) guy and adored his big brother! He made all kinds of noises and his hearing was just fine but actually said very few words by age 21/2. He was diagnosed with Delayed Speech and had to do therapy for a couple of years. I am happy to say that Ethan has a wonderful vocabulary and has no issues with speech anymore.
February 1, 2009 I landed back in the hospital. The prior months of 2008 I had been experiencing a lot of diarrhea and had lost about 20 pounds (which is a LOT for me because I’m petite to begin with). I was in so much pain in the gut that I couldn’t keep anything in. Everything hurt to eat or drink, even water, and I became super week. So, on my baby’s 2nd birthday, instead of seeing Elmo On Ice, I was having a colonscopy in the hospital. The biopsy confirmed that I had Lymphocytic Colitis — inflammation of the large intestine; my second chronic autoimmune disease. It was around this time I began to experience occasional severe night sweats. After blood tests and an MRI everything came back just fine — I wasn’t “sick”, I had begun peri-menopause at age 39!
By the end of 2009, I had had enough!!! Enough pain, enough sadness, enough challenges to last a life time. My boys were now 6 and almost 3, I was a full-time stay-at-home mom whose body was falling apart and whose mental health was hanging on by a thread. My lower back felt broken, my ankles were mush, I had sciatica running down my right leg, and my colon was a wreak. I was taking pain pills daily along with my other cocktail of prescriptions, adding alcohol into my coffee in the morning and crying all the time. I had support from my mom, who helped me tremendously with the boys and my husband did his best to support and comfort me and take care of the boys when he could in the evenings and on weekends. But, I was in agony and seriously thought about taking that entire bottle of pills more than once.
In March of 2010 a small ray of light peaked through the clouds when I had my first Total Ankle Replacement. After being turned down from the only local orthopedic surgeon performing total ankles at the time, for being, “too young” at 40 I did my research and found a doctor in Ohio who would prove to be my knight in shining armor. Dr. Berlet said my ankles were basically “mush” and that most people would be in a wheelchair by now. In December of that same year, after 2 years of failed back injections I had an S1-L3 Lower Lumber Fusion. In the summer of 2011 I went back to Ohio and had the right ankle replaced. I wrote a previous blog post about this time called Lost and Found.
Finally, I had a bit of a reprieve from the worst of my disease. For the next 5 years I focused on being a mom, a wife, and following my passions. I volunteered at my boys’ school, we took a few incredible trips, including the Dominican Republic, Paris and New York City. I took several art classes, learned oil painting, and created this website.
In 2016 I decided to have my left elbow replaced. It had begun to bend and was starting to hurt. In the summer of 2017 I had surgery to remove part of the underside of my tongue due precancerous cells from Oral Lichen Planus; my third chronic autoimmune disease. In November, I had my right elbow replaced for the first time. After this surgery my painting quickly came to a halt but I found other creative outlets such as Family Genealogy and taking on-line classes to learn about Essential Oils. In the summer of 2018, I injured my right knee in Cancun and in the Fall I fell off a bike and broke my right clavicle and suffered a black eye.
One year later, in the Fall of 2019, I finally picked up a paintbrush again and took a class from a well-known local artist which I detailed in several previous posts. The class was incredible — I learned more in that one class and met the most incredible group of women — I was in heaven, but it wouldn’t last. I had put way too much stress on these new elbows by carrying over the weight limit (10 pounds each) and painting furiously. I suffered the consequences dearly and had loosened both components of my right elbow. Another surgery to kick off the New Year! Yippie!! That’s the one that was my D-Day — a foreshadowing of the year to come, not just for me but for the world at large. Cue the High Blood Pressure (fourth autoimmune disease), unrelating hot flashes, and first neck fusion in the summer.
So, by the beginning of 2021, I was more than ready to make that call to the therapist — the one my rheumatologist had recommended over a year ago. I knew I was drowning and needed a life-preserver. Even if she couldn’t solve my full-blown existential crisis, she could relate to me as a woman, as a wife, as a mother and as someone living with chronic disease.
We talked for many months over the course of the year. She was able to empathize with my situation probably more than a “typical” therapist ever could. It really helped to tell all my bullshit to somebody objective, who didn’t judge, and who wasn’t related! I felt a bit less alone and a bit less depressed. Although we didn’t create any miracles, I do feel that she helped me take one small step out of that deep dark hole. And for this I am grateful!
Thank You Celia 🙏🏻
Dark Night of the SoulHealth, Life
2020 was a very difficult year for me. Starting out with that awful elbow revision in January from COVID-19 forcing all of us indoors into our shared spaces with little to do except drive each other CRAZY, to my summer of high blood pressure, hot flashes, and failed ACDF surgery, and not to mention I found the current President absolutely vile (but not everyone in my circle felt the same) which only made my loathing of him even more profound and at odds with certain loved ones. Again — circle back to Insanity.
I worried about my failing body, knowing full-well that people like me don’t age gracefully and usually expire early due to complications of the disease. Would my elbow need another revision? Would it even be possible? What happens if it isn’t? I was terrified to use it given the Hell that I went through. How long would these ankles last me? I was already going on 10 and 9 years respectfully; longer than my doctor had envisioned. When were they going to give out? My right hand is deforming more and more each year – and often the tendons seize up (which makes it very hard to paint, type, write, anything fine motor) and have to be forced back into place. My left shoulder was acting up also – what the fuck was this now?
By the end of the year I was feeling like a caged tiger — in my mind, in my body, in my spirit, in my family, in my home, in my community, in my world. Nobody was getting along, I felt unloved, unsupported, and misunderstood by my family, betrayed by my body, convinced my soul had a plan to leave early, so why even bother trying? Why did I incarnate into this extremely challenging life? What was the point of any of it? I felt so down and lost and couldn’t see a way out. I thought very seriously about giving up and letting go; I even had a plan. However, I couldn’t do that to my husband and kids, my parents, my closest friends. I had to find a way out of the deep dark hole…
Fall 2020Life, Photography
A Better Pain ScaleCartoon, Funny, Health
So, somewhere a while back I came across this revised pain scale. I just had to print it out and save it. It now hangs in my studio. The creator is Allie Brosh, the genius behind Hyperbole and a HalfTM. I may just have to make copies and take to all my doctor appointments!
The BeltLocal Art, Other Art, Photography
At the end of September we went downtown to check out a really cool spot in Detroit called The Belt. Known as a “culturally redefined alley in the heart of downtown” and named for its physical orientation in a former downtown garment district, The Belt is located between Broadway and Library Street and links Gratiot and Grand River. The project was conceptualized and curated by Detroit-based art gallery Library Street Collective. Even the parking garage walls are painted in a graffiti-larger-than-life comic book style. As you enter The Belt you see various large-scale art installments and murals — each one curated by a different artist — that rotate throughout the years.
When we were there the Country was still reeling from the murder of George Floyd. In response, Dallas-based artist Jammie Holmes initiated a public demonstration, across five U.S. cities. On May 30, Airplanes with banners flying Floyd’s final words connected these cities in a national protest of police brutality against Black Americans.
“The Belt is another example of our growing interest in reimagining underutilized spaces throughout the city. This formerly desolate alley has transformed into one of the most dynamic pedestrian-friendly public spaces in the country.”
— Anthony Curis, founder of Library Street Collective
My AngelsLife, Photography
High Blood Pressure, Hormones, and Another SurgeryHealth, Life
During the summer I was experiencing heart palpitations, exhaustion, and almost constant, relenting, all-over hot flashes. Any amount of activity would bring at least one (and usually all three) of these lovely symptoms crushing down on me. Needless to say, I wasn’t able to do a whole lot of anything and I was cranky as hell. With COVID-19 still in full swing, we were very careful and didn’t venture out too much; I felt like a caged animal: like an angry, sweaty, badger and since I wouldn’t be able to start HRT until the Fall, I had to “sweat” it out.
I turned my attention to my blood pressure. I had been on high blood pressure medicine years ago but then was weaned off and hadn’t been taking meds for it ever since. I purchased a new BP cuff and started using it regularly: it was evident that something was wrong — the numbers were incredibly high and I was worried. It took a couple of months and two medications to get things under control.
I finally decided to have a cervical surgery for my ongoing neck/shoulder/nerve issues. Over the past 7 years, I had done everything under the sun to get some relief including anti-inflammatories, opioids, muscle relaxers, medical marijuana and CBD, injections, massage, TENS, and physical therapy. Due to my J/RA for almost 50 years, my neck is auto-fused in two places and I have severe degeneration with both spinal and foraminal stenosis resulting in pain, tingling, numbness and nerve damage.
In mid July I had an Anterior Cervical Discectomy and Fusion (ACDF) C4-5. The incision is made from the front of the neck, the affected disc/s are removed and replaced with a spacer, and the surrounding osteophytes are removed. Then a small plate and screws are placed to fuse the level.
Overall the surgery seemed to help a wee bit but not as much as I had hoped. But more about that later…
Suttons BayLife, Photography, Travel
Over the July 4th Holiday our family took a mini vacation to Suttons Bay, Michigan. It is one of the small towns along the infamous M22– a 116 mile stretch of highway along the beautiful Lake Michigan coastline in the upper lower peninsula. Located in gorgeous Leelanau county, famous for its 27 Wineries, Suttons Bay is 20 miles North of Traverse City and is a small quaint waterfront town with specialty shops, eateries and it’s own beach.
I was able to snag a cute little 2-bedroom apartment for us that allowed dogs. It was located above an art gallery right on the main street. We arrived in the early evening and after getting settled in, we explored the town, ate a delicious meal outside at the historic V.I.Grill and then capped off the night with amazing ice cream from 22 Scoops!
The next day, July 2nd, was my husband’s birthday. Lucky dog– his birthday always coincides with the national holiday and we frequently do a little get away given the extra time off of work.
For that day we decided to check out Torch Lake. If you’re not familiar, this long inland lake is known as the “Caribbean of the Midwest”. Although it is quite deep in areas, it boasts an enormous sandbar where the water is only about 3′ deep — a haven for boaters and partiers! And in these shallow areas the water sparkles under the sun, even the deeper lake is a gorgeous blue!
While the main beach/park was closed, we found a small little outlet to swim. It was extremely refreshing after the 90° heat wave we were experiencing.
Afterward, B and I toasted his birthday with margaritas and we all enjoyed a Mexican dinner in Traverse City.
The last couple of days we did a bit of local shopping, drove along M22 to explore the other waterfront towns around us, visited the Grand Traverse Bay Lighthouse, went to the local Suttons Bay beach and ended each night with a giant scoop of ice cream from 22 Scoops!
The Circle of LifeInspiration, Life
Happy Birthday To Me
So, I finally turned 50! I can’t really believe it. Mentally I still feel like a kid most days and physically– well, physically I feel 100! So, I guess 50 makes sense! Having a milestone birthday during this Pandemic is a huge letdown. I’d told my husband years ago that I wanted to do something big for my 50th; like a hot air balloon ride over some gorgeous place — Italy-Paris? Or vacation in the Maldives or do an African Safari – just the two of us. Or perhaps a tummy-tuck with a side of liposuction? If I was able – I think I would love to try skydiving!
Needless to say none of those occured. The day was quite uneventful but my boys made the best of it. They snuck out and brought me Tim Hortons in the morning. In the evening I was treated to Chicken Shack ribs and a spinning musical flower with candles atop my favorite carrot cake from J. Alexanders — Yummy 🙂
The table was decorated with really beautiful champagne-colored balloons with tiny LEDs inside that stayed lit for days. My friends and family had sent flower arrangements and my husband gave me two sweet necklaces that fit together — representing our family. While it wasn’t the birthday I’d hoped for, we made the best of it — and years from now I’ll always remember turning 50 during the Great Pandemic of 2020.