La Mémoire Noire or The Dark Memory is a letter series written to my first surgeon. The man who caused everything ultimately in my life to reach this point today. I was to have 2 surgeries beginning at the age of 9 and his surgical errors altered the course of my life. Ultimately, I instead would require 7 surgeries and experience repeated life-threatening complications resulting in medical PTSD, suicidal and homicidal ideation. This is trauma I am still trying to heal from nearly 30 years later that has touched every aspect of my life and how I react, view, and process the world. I have a lot of hate and anger for this man. As part of my therapeutic efforts to heal, I am writing this series to him. It is my raw, unedited thoughts and feelings towards this man and all that transpired following my first surgery that he performed. It will be a series that is periodically updated as I process each letter, my trauma, and continue inching towards healing embodying full love and forgiveness for myself and others.
Monday, September 25, 2023
Friday, June 23, 2023
I started this article as 2022 was coming to a close and I was reflecting on all that has transpired and what is presently at hand. I only now feel ready to publish it though as it has been a pretty intense 6 months of 2023 already! As I was reflecting on 2022, I had the following questions and answers and I find myself asking them again now in June of 2023.
Has this been the best year for me? No, absolutely not. Has my life changed for the better this year? Absolutely it has. This acknowledgement led me to the realization that I was and still am living my best life right now. And I'm celebrating it with immense gratitude.
As a result of my medical PTSD, I've struggled with periodic bouts of depression and intense anger with a longing for death that I've experienced since my first surgery at age 9. It didn't help in high school during one of my near-death experiences that I was overcome with the deepest sense of peace I've ever encountered. This peace has left me longing for death even more ever since. So, joy wasn't something I regularly experienced or even thought about, much less sought. To me, life has merely been a waiting period full of suffering. This isn't to say that I've lived an unhappy life. Rather, it's often a life overshadowed by fear - fears of losing my parents or other loved ones, fear of uncertainty, fear of emotional and physical pain, fear of the past repeating itself.
2021 forced me to dedicate 2022 to focusing on my mental health, learning self-care and allowing self-growth. I started 2021 with emotional turmoil from reliving my own medical traumas while writing my own medical story and my children's book about FAP for publication. This was an intense, emotionally exhaustive and long process - much more than I had anticipated. I ended the year with my 8th abdominal surgery and new, unexplained debilitating chronic pain that would take over 6 months for a diagnosis of Abdominal Migraine. I also was diagnosed with Fibromyalgia around this time, a new diagnosis for me that I haven't even given any thought to until recently.
I began 2022 with resuming anti-depressant medication and counseling. Shortly after, within the span of a month, two of my family members who had helped raise me, passed away. Not long after that, another family member who had helped raise me moved 2.5 hours away - she was no longer physically close to me in proximity, and it was as though I was losing her too as I was losing those that my childhood life was so firmly founded upon. I was taken back to the loss of previous family members in the early 2000's that shook me to my core.
In 2022, I added metaphysics courses and EMDR therapy for trauma work to my CBT therapy. While life significantly improved upon appropriately managing the pain of Abdominal Migraine, the end of 2022 wasn't easy either. I started experiencing regular vomiting with the reason only just being determined in May 2023 as that of esophageal dysmotility. I lost another family member and am preparing for the loss of yet another family member. And my trauma work to process not only my past trauma but also my future fears is extremely emotionally difficult work.
And yet, I'm at a place in my life that I can't deny is the happiest time of my life. I'm cherishing every moment with my parents. I have built a family and life with my life partner, his son and family. I've regained my quality of life after enduring a year of debilitating pain. I'm learning and practicing self-care and healing from my past trauma. I'm maintaining employment, serving in new advocacy roles for the cancer and rare disease communities and celebrated the 10th anniversary of LAP.
In 2021, I attended my first Reiki session and was confronted by my lack of experiencing joy with a challenge to start finding joy. Through all of the hard work I'm doing for my self-care, self-healing, and self-growth - I can finally say that I do experience moments of joy now in life. And they are absolutely wonderful, and I want more of them. I want them so much so that I often am faced with moments of fear and anxiety to hold onto those moments as they're overshadowed at times by my fear of never having them again. This is becoming a lessening concern though as I am incredibly doing well maintaining self-care after a year of trial and error with how to maintain self-care practices.
I'm also relieved and grateful to finally know the reason for my unexplained chronic vomiting after nearly a year of this issue only worsening and learning what my treatment options will be for it. It is something I've really been struggling with since July of 2022 that was only worsening and taking a heavier and heavier mental toll. With my esophageal dysmotility, I am faced with very limited options for treatment - a muscle relaxer or surgery - both of which my doctor doesn't like. Fortunately, I previously took Baclofen in 2014 following developing a bulging disc in my neck and didn't experience any side effects from the medication. My doctor agreed to allow me to trial it for my vomiting and so far, as long as I time my doses right and don't overeat, I'm able to keep food and drink down! I've decided to not pursue surgery for two reasons - not only because medication is working but also, my doctor confirmed I have another stricture around my small intestine. And as he reminded me, no one really wants to do surgery on me due to my long history of surgeries and excessive adhesions. I fully anticipate in the future it is likely that I will require surgery for the Whipple Procedure and/or to remove the adhesions creating my stricture. I'd much rather at this point, trade a surgery for esophageal dysmotility for one or both of these possibly needed surgeries in the future. There comes a point when a person becomes inoperable, and I don't want to hasten that time for myself any more than what's absolutely necessary.
The mental toll I've been under this year has also been compounded by developing Post Concussion Syndrome following a fall in February 2023. This is a subject I will explore in a future post but do not presently feel comfortable publicly sharing the full details of what life has been like with PCS at this time except that PCS has been an extremely challenging and nightmarish experience that no one has been able to truly understand how it's affected me except for my partner, Mike. And that has also been a challenge as it has led me to feel isolated, misunderstood, and dismissed by the majority of people in my life because they don't see or grasp what it's like to have a brain injury that isn't healing at an expected or wanted rate. My brain is still healing with slow improvements, which is something I am also extremely grateful and relieved about and hope that when my brain fully heals that I won't have lifelong complications from the injury.
It's a difficult process to accept when life changes with no guarantee or even signs of improvement to return to how life was previously. In spite of a multitude of changes occurring in the last 2 years with barely any time to adjust to one change before another arises, I can confidently say that presently I am living my best life and even though there are no cures for my conditions, I'm full of gratitude for where I'm at in my life and I eagerly anticipate a world of wonderful things to continue as time goes on.
Sunday, April 30, 2023
- August 2021 - gallbladder removal, chronic debilitating pain starts following surgery. I'm started on Lyrica in December. After surgery, I begin losing about 10 pounds a month until February because I have no appetite and Mike forces me to eat one meal a day. In March, I started to gain a small amount back and then hold steady as my appetite improved a bit.
- April 2022 - diagnosed with Abdominal Migraine, Amitriptyline medication is added to the Lyrica. Sometime between April and July, I start noticing that not only do I feel full easily and quickly but I also feel like I need to vomit.
- July 2022 - I start vomiting whenever I feel too full. It literally feels like I have food all the way from my stomach to the back of my throat. If I don't vomit, I continually regurgitate it and swallow it on repeat until I lean over, open my mouth, and squeeze my stomach. This is not vomiting caused by nausea. This will begin to progress to increase in frequency and ease to the present day. My weight continues to incrementally increase again until by January 2023, I have gained back almost all of the weight I lost following my gallbladder surgery.
Tuesday, January 31, 2023
I spent 2022 learning self-care after realizing I never actually given myself self-care before. I think this maybe actually could even be considered as fawning, a trauma response. I have dedicated my life to the service of others, focusing on their mental well-being and empowering them to navigate and succeed in their own chronic illnesses. I was so focused on how to help others, professionally and personally, for the last 13 years that I never stopped to think about what I need. Prior to entering the work force, my life focused on my sheer survival since the age of 9. There wasn't time to think about self-care, my body was just trying to live to the next day and my mind was just trying not to break in the process.
Now that I've learned self-care, I find myself experiencing great moments. But they're so great that I forget to maintain self-care resulting in a backslide. And not just a mental or emotional backslide, but also a physical one. My physical health and mental health are so closely intertwined that if I don't feel decently, tolerably well physically, my mental health plummets. It may only last a day, or it may last weeks to months. It took most of 2022 for me to finally identify the cycle and its root cause. I feel decent physically and am content emotionally, I overindulge in activity and stop focusing on self-care, I start to have increased physical symptoms, I start to get depressed and then they feed off one another. It isn't until I decrease my activity and heavily focus on my self-care again that I'm able to start to stabilize once again. And then the cycle continues.
I identified the cycle and its source early in December 2022 and then stayed in a frozen state for a few weeks, terrified to resume activity because I don't yet know how to balance my self-care and my activity without spiraling again. And so, I was left being frozen with fear and feeling overwhelmed. When trying to stop a spiral, I don't do anything beyond working as regular and I only engage in a small activity once during the weekend. There's so much that I want to do, so much that I enjoy but something must give, must change. I knew I needed to evaluate and prioritize my activities to identify a working plan to maintain self-care and prevent continued cycling. The difficulty lied in finally sitting down to do just that.
With the continued encouragement from my counselors for a couple weeks, I finally allowed time for reflection and evaluation. I decided to maintain self-care I will:
- Stop trying to do so much because it is wearing myself thin.
- Weekend activities will be limited to either a) one full day of activity or b) at most, 1/2 day of activity either on one weekend day or both weekend days. The rest of the weekend time I will dedicate to either resting or my rare disease advocacy depending on what I feel able to do at the time.
- I will no longer push myself to rare disease advocacy on weeknights and will only engage in advocacy efforts during these times if I feel up to it.
- I will take at least one day off work every month for myself, even if it is only spent resting at home.
- I will continue EMDR therapy on a weekly basis and adjust my CBT counseling sessions as needed.
- I will increase my antidepressant medication when needed (This was approved by my PCP)
Friday, October 28, 2022
Chronic pain – it’s been my companion in life early on. It served as an early warning system that there was something wrong with my body. It was with this chronic abdominal pain that led to discovering my Familial Adenomatous Polyposis diagnosis at age 8. It was with this that my colon was able to be removed in time to prevent my already turning cancerous polyps from exploding into cancer at age 9.
I can’t say it has served a noble purpose since then though.
Instead, it’s become a minefield for me to navigate; trying to find my way to
balance it and enjoying life’s activities. Throughout the years, I've required physical or occupational therapy 4 times for the management of chronic pain - back pain, neck pain, tendinitis, and nerve pain.
My first year of surgeries, I remember the chronic pain I
began to experience in my back. During my hospitalizations, I required my spine
to be lined with what felt like an endless row of ice packs to merely numb the
pain. I remember the smell of the powder that lined the inside of the ice
packs. I remember how they felt in my hands and the coldness along my bare
back. I remember the agony. Perhaps, if we had realized during that year that
Morphine doesn’t have any effect on my pain it would have been different. We wouldn’t
realize this though until my surgeries during my high school years. The chronic
back pain would have been different too if my doctors had referred me to
physical therapy after my surgeries to strengthen my severed abdominal muscles
so that they would be able to support my back again – thereby reducing or
alleviating my back pain.
The next few years I don’t remember much, and definitely not how I physically felt. This blocking out of memories is part of my coping
mechanisms with the medical PTSD I developed from that first year of surgeries.
I believe I must have been healthier during my middle school years – I didn’t
have any hospitalizations during that time. I wouldn't have hospitalizations
again until I underwent my ileostomy reversal in 2001. This would lead to
chronic pain I haven’t been able to ignore or forget since; pain that changes over
the years but has remained constant.
Following my ostomy reversal, due to adhesions I began
having severe abdominal pain that worsened with ingestion of food or liquid.
The severity of this pain has varied over the years. For the first 6 years
following my ostomy reversal, it was at its peak in severity. I remember every
time we’d go to a restaurant, I’d lie down on the bench at our tables, curled up
in the fetal position trying to cope with my abdominal pain. Ethnic foods
caused the most pain amongst the foods I ate – but there wasn’t any food that
didn’t cause pain. My body finally began to adjust to its “new plumbing” I
suppose, and the pain did decrease in severity after those first 6 years. It
remained at this more manageable level until 2015.
In the meantime, I would develop tendinitis in both wrists and chronic neck pain. Due to malnourishment throughout the years, I developed tendinitis in my wrists and degeneration in my neck allowing for a bulging disc to occur. I underwent a few months of occupational therapy to manage the tendinitis pain and I required 6 months of physical therapy to manage my neck pain. I continue to have chronic pain in my wrists and neck at a tolerable level majority of the time, except for sporadic flare ups.
In 2015, I was malnourished and dehydrated from depression during the
height of my marital issues. As a result, my blood pressure bottomed out while
at work and I fell, hitting my head on hard tile. This event would lead to a
spiral of new pains over the next several years. A spiral that wouldn’t be
fully understood until 2022.
Since I fell at work, I was required to be evaluated at the
ER – which led to my first hospitalization since my last one in 2007. During this hospitalization my pain would once again change, and it changed overnight. The
night before I was discharged, I had a headache during the middle of the night –
a rare occurrence at the time. It wouldn’t stop and I was only ordered Tylenol
and Morphine for pain. I don’t like taking pain medication of any kind – so much
so, I forget that OTC medications such as Tylenol, Ibuprofen, Aspirin, etc.
even exist. I couldn’t sleep and the headache pain wouldn’t stop, so I asked
for Tylenol. That didn’t make a difference and my only option was Morphine. I
didn’t anticipate the Morphine to be effective – it never has been before, and
it was in the middle of the night; I didn’t see any sense to have an on-call
Hospitalist be contacted for a pain medication to be ordered for a headache,
especially when I was to be discharged the following day. So, I tried the Morphine
and as expected, it didn’t help my headache. Instead, it caused severe
constipation that would in turn cause severe abdominal pain. Along with this
pain came severe nausea – something I don’t recall experiencing since having my
7th surgery to remove adhesions following my ostomy reversal. This
new, severe duo has stayed with me ever since waking up that morning following
accepting the Morphine. It was like a switch had been flipped and it would take
months of trial and error with medications to find the right combination for me. I relied on Bentyl and Compazine three times a day. These were the only medications to manage my
pain and nausea so that I could function more easily. Without them, it was
difficult to get out of bed much less participate in life. My doctors couldn’t
find any other reason for the new pain and nausea other than adhesions with
gallstones contributing as well. And this is how it stayed until my 8th
surgery in 2021 to remove my gallbladder and adhesions for the 3rd
Magically, the first 2 weeks after my 8th
surgery, my pain and nausea ceased. I stopped requiring the Bentyl and
Compazine. However, at the 2.5 week mark my pain would once again change – and change
to a level I had never experienced before. The new pain reduced me to becoming
bedbound outside of the time I forced myself to go to work. I lived like this
for 4 months following this surgery. Test after test was completed, medication
changes were made; a cause couldn’t be found, nothing helped to provide even a
glimpse of relief other than lying down. Any activity, even sitting up,
worsened my pain. My GI was at a loss and didn’t know what else to do than to
try Lyrica. Lyrica changed my life within a couple weeks my pain started to
lessen to a tolerable level, and I could start venturing out of my bed outside
of work hours. During this time, I was consulting with every specialist
possible. After 6.5 months, I finally had an answer and treatment plan – it was
Abdominal Migraine that started from my fall in 2015 and was exacerbated by my
Fast forward to August 2022, my pain and nausea were well
managed by my Neurologist treating the Abdominal Migraine, but I still had pain
that worsened by too much activity. While I was able to maintain working and participating
in activities of my choice again – I risked a 3-day pain flare anytime I exerted too much activity. What was too much activity? I didn’t know, especially because
the pain flares wouldn’t hit until 2 days afterwards.
But my life would once again change in respect to my chronic
pain when I asked for physical therapy. Within the course of 3 months, I've started to have days with barely any pain, days that I've felt better than I had in
My body had become severely deconditioned during those 4
months of being bedbound and while my medications are appropriately treating my
nerve pain, my muscles were too weak and contributed to my pain. I required
physical therapy twice a week for 2 months to focus on strengthening each of the 6 major muscle groups to better manage my pain. My progress deteriorated too fast
when I decreased to once a week even with exercising at home. I had to slowly
increase my exercises, incorporating new exercises and their frequency and
level of difficulty to manage the pain flares that occurred after each
milestone in my therapy. There were days that were emotionally difficult for me
as I would be filled with frustration and hopelessness with each “setback” in
the progress I was making. There were times I would quietly cry without control
during my therapy sessions during a pain flare.
Over time, I went from not being able to tolerate 2 days of
activity in a row to completing 10 consecutive days of exercise without a pain flare.
I could have kept going too on that streak, a pain flare didn’t stop me from
continuing on. I was feeling particularly emotionally and physically worn that
I let myself have a day or two of rest – and really our bodies need a rest day
after 6 consecutive exercise days.
The last month of physical therapy I was able to decrease to
a session once every two weeks while maintaining exercises at home. Upon being
able to accomplish this decrease without having a pain flare, I was ready to
graduate from physical therapy.
I’ve learned I’m going to have to maintain exercising at
home on a regular basis to manage the pain from my Abdominal Migraine in conjunction
with my nerve medications or the pain will return to its previous level. This
is a challenge for me. I haven’t required to maintain my physical therapy
exercises in the past. Previously, I was able to maintain the gains I made in
therapy, but not this time. My pain level increase once again with a mere break
in exercises for 4 days or more.
I wouldn’t have been able to reach pain management without
physical therapy. I required the professional guidance of not only what
exercises to do but how to do them, the frequency, etc. to move past my plateau
of activity and pain. Now I know what exercises to do to maintain pain
management and what exercises to do during a pain flare. I went from experiencing
difficulty watering my flower garden, sitting or crawling for a few moments on
the floor, to being able to do army crawling – something I didn’t dream being able
to do following surgery.
I’ve undergone physical therapy before and witnessed the miracles
it provides but I didn’t realize the extent of those miracles until now. There
are 2 main things I will always recommend now as part of managing chronic
illness – counseling for mental health and physical therapy for physical
health; they have repeatedly given me back my quality of life.