I haven’t written a blog post in a very long time and here I am to catch you up!
I’ve been very busy with a strong focus on therapy and healing my inner children. Having a childhood filled with so much trauma, I have several inner children that need attention, love and understanding. I struggled with this idea and concept for at least 4 years thinking it was utter bullshit. I’m finally in a place where I understand that the parts of me that were sacrificed to please others, the parts of me that weren’t permitted to exist, the parts of me that were told she wasn’t important - they all need to understand that it really had nothing to do with her and everything to do with the adults in her life.
Today’s post isn’t really about my childhood. Today’s post is all about grown-up me. It’s been a tough year. I celebrated one year of no contact with Jack and I honestly feel free. I feel happier and I feel like I’m true to myself. I don’t have to pretend to be someone he wants me to be while I roll my eyes at him in silence. The hard part is the judgement from others, but I’m over it now, I think. Other people haven’t walked in my shoes so I cannot really expect anyone to understand. I feel like the judgement will increase 10 fold once he passes away. He was recently diagnosed with bladder cancer, which (I think) has now presented in his prostate. At least I know what my next cancer will be and I’m fortunate enough to have an excellent Urologist who tests me for this cancer, specifically, every year. I can’t help but think that had Jack just not been selfish and taken the blood test, like I asked five years ago, he too would have been on a cancer screening protocol and he wouldn’t be where he is now. His choice, he knows everything, after all. He KNOWS the cancer gene didn’t come from him.
Interestingly, when Roxanne called me to give me the news about Jack, it felt like she was talking about an acquaintance, someone else’s father, not mine. It is when I realized that the reason my last year was so difficult was that I truly did spend my time grieving my loss. The loss of my father, but more so the loss of the father I should have had, the loss of the man I thought I had, the image of the superhero is finally dead. I faced my reality square in the face and realized that he is a weak man who prioritized himself and left his daughters to be abused. The man didn’t even properly care for me medically - that’s what this post is about.
When I was younger, I had great fun discovering my flexibility. I used to sit in a W position and even sleep in that position – it was very comfortable for me. I remember my shoulders could just pop out at will and I used to be able to do that by simply extending my arm and shrugging my shoulder – never once did that cause pain. I could bend my fingers back so they nearly touched my wrist. My finger joints, each one, could individually flex and I could lock my finger joints in place. To this day, I can still get my ankles up over my head and I’m 49 years old! I remember when I went for my first ever massage and the therapist being a little freaked out because he said that he could literally feel my rib cage move when he applied light pressure.
With this ability also came pain in my feet. My feet started hurting when I was about 12 years old. My big toe started turning inward on both feet by the time I was 14. Despite complaining about the pain when I walked, Jack never considered taking me to a doctor. Instead, he diagnosed me with arthritis and the remedy was applying warm olive oil on to my toes using cotton balls. I assure you this did fuck all except teach me to stop complaining. It wasn’t until I was 28 years old I was told that I have very high arches that collapse when I walk and that I should have been wearing orthotics or better shoes from age 5. I have an over pronation where my feet roll inwards. It’s rather painful. I even tried cortisone shots in my toes and toe joints – it didn’t do a whole lot so I didn’t continue with that remedy. I did get orthotics and they did help, but I stopped wearing them because they hurt the skin under my feet. Rather than continue with that, I chose to dispose of most of my shoes and invested in a ridiculous amount of Doc Martens, Birkenstocks and 4 inch wedge shoes instead of 6 inch stilettos. I also saw a specialist 3 hours away who would treat my feet with a strong laser therapy, a treatment that helped manage the pain for an entire year.
By the time I was a teen, my back would just go out on its own whenever it felt like it. I later discovered that my SI joint, which I was told ‘fuses’ and doesn’t move, actually does and is loose, in my case. When I was pregnant, it contributed to my requiring walking with a cane and I probably should have used a wheelchair. One time when I was about 14, I had a skiing mishap where my left binding didn’t pop off but my knee cap sure did! That was the most painful experience in my teens. I remember laying on my back in the snow, screaming in pain and crying. Jack was late picking us up from the ski hill, as per usual, and I was tired of waiting nearly an hour and I decided we should use our downhill skis to cross-country ski home. Jack finally arrived and told me to take a deep breath; he straightened my leg and home we went. After I fell down the stairs at 16, hitting every single step with my coccyx, I spent 3 days walking bent over at the waist before being taken to a chiropractor. Another very painful experience having some large man manipulate my back. It did not help. God forbid I see a real doctor. I lived in a senior’s residence so I just started eating Naproxen as if it was candy for a few weeks. Eventually my back healed, but it’s never been the same. By the time I was in my mid-20s I suffered from severe and chronic migraines, severe dysmenorrhea, knee pain, back pain, neck pain, and foot pain. I knew it was ‘just arthritis’ so I ignored all the pain for several years.
During my first pregnancy, I had to get used to wearing flats once I hit 7 months pregnant. It was incredibly painful because my Achilles tendon had shrunk. I was an expert at wearing heels; I could even sprint in them. I owned over 200 pair. I loved my heels – they made me feel beautiful and tall. By the time my maternity leave was over with my first baby, I wasn’t able to wear heels! It caused so much pain in my feet… I bought more Docs. I even bought a pair of heeled boots with a thick sole. I love them. But I have a hard time wearing them even 16 years later. Now I spend my time wearing Vionic shoes and they’re all flats. I even own not one, but two pair of running shoes. I don’t much like wearing them, but I have to.
A few years ago, I dug up all the grass from my front lawn and down by the curb in favour of a perennial garden. I’m allergic to grass and touching it would make my skin develop welts which were not only itchy but rather painful. I thought I’d dislocated my shoulders doing it, or aggravated my arthritis and of course, I ignored the pain for a few months. Eventually I went to the doctor and she prescribed Naproxen and some x-rays. The x-rays came back ‘normal with minor arthritis’, but nothing to explain the pain I was experiencing; I decided I was just a whiner and felt it best to suck it up because obviously if it was minor arthritis I was being a hypochondriac. Except three years later, I was still unable to raise my arms over my head and now my elbow and wrist felt excruciating pain. Some days I had to place my entire arm in a sling because just minor movement would bring me to tears, I couldn’t even drive if my right arm was ‘acting up’. I wore splints 24/7 for months.
I called the doctor and told her I should do physiotherapy and she agreed. After 31 sessions I was cut off from my benefits and told, I couldn’t use physio for ‘maintenance’ but by this point I only saw minor improvement and I could barely do my job because typing was also incredibly painful. I went back to the doctor and she sent me for an ultrasound and x-ray to see if perhaps I had carpal tunnel syndrome. Results came back with everything showing ‘normal’.
In the meantime, my therapist had suggested that many people who have suffered trauma have unexplained pain later in life. She further explained that body pain is very common for those with PTSD and it will manifest in the body years later as migraines, body fatigue, physical muscle pain, etc., your body’s way of telling you it’s time to rest. “BULLSHIT!” I screamed internally, I respect my therapist too much for that to be said aloud, but given the blank stare, she received in return, she knew not to push it.
I went back to my doctor and told her that the tests were wrong because I could no longer feel my hands and my bones physically hurt. I could, in all honesty, accidentally reach in to my oven, remove pots, and not even feel it. She decided to send me for a cervical spine MRI to see if maybe I had a pinched nerve in my neck. I decided to do a Google search on “what can be seen on a cervical spine MRI”. Google did not disappoint… I noticed one of the things you could see was joint issues and soft tissue disorders and I clicked on that link wondering if I could find out what a normal shoulder looks like on such a scan. I’ve always been hyper-mobile and I was curious to know what THAT looks like on a scan… then I fell down the rabbit hole. Eventually, I clicked on a different link describing a rare connective tissue disorder called EDS (Ehlers-Danlos Syndrome). Wouldn’t you know it… I have all the markers. This shows what I'm still able to do:
My scan results came back: Normal. By now I was convinced I had carpal tunnel syndrome even though all the tests came back negative. I asked to be sent to do a nerve conductivity test. She quickly agreed and I had my appointment about 6 weeks later. During my appointment to request the EMG test, I also brought in all the research I’d uncovered on EDS and she agreed that it was suspicious but fortunately Toronto has a clinic, the only one in Canada that specializes in EDS. She sent the referral in March 2023. At the time, the wait list was 12 months. I bought a walking cane, a knee brace, more wrist splints and decided to patiently wait my turn.
By end of March/early April, I don’t know what happened, but I found myself in incredible pain seemingly overnight. When I woke up in the morning my entire body felt like I’d been beaten. I’d wake, undress, and expect to see bruises all over my body, but I had none. I was in pain everywhere. Ehlers-Danlos is responsible, big surprise!
Prior to my EMG appointment, I researched the physician, of course and discovered he is a Physiatrist (a doctor whose specialty is Physical Medicine and Rehabilitation (PM&R)). The same type of doctor I’d been referred to at the EDS clinic, which by now was a 24 month wait. Dr. Jay and I met virtually and he spent 40 minutes with me taking notes. I also mentioned my suspicion that I had EDS and why I suspected it, I demonstrated my abilities and told him my own score using the Beighton scale was 7/9. A score of 4/9 qualifies for an EDS diagnosis.
I met with Dr. Jay in person for the EMG test about 4 weeks after our virtual meeting, where I also informed him that the wait for the EDS specialist was now 24 months. He tested me in office prior to the EMG test and confirmed my suspicion. He also told me that I could not wait 24 months given the flexibility in all my joints and my difficulty with walking. I was also told my cane was inappropriate and I’d need a crutch, a walker or a wheelchair. Made sense when he told me because my hand goes numb when I use my cane as it causes my wrist to hyper-extend. He also called me highly intelligent to have worked this all out on my own – not many people can. Turns out I also have severe carpal tunnel in my right hand and require surgery. Dr. Jay sent the surgical recommendation to my GP and also sent my EDS diagnosis recommending that I see an Occupational Therapist while I wait 24 months to see a specialist. I am over the moon.
Every day is pain, pain, pain. I can no longer walk my dog because my knee hurts if I walk more than 500 m. Some days I climb the stairs in my house on my hands and knees. I’m so grateful to Dr. Jay because in about two weeks the Occupational Therapist will assess me in my home. I anticipate needing a brace for several of my joints to improve stability: right shoulder, left wrist, right hip, left knee, both ankles and hopefully my feet start to feel better. My future is a wheelchair and I try not to think about it. EDS progressed so quickly in just a few short months that I’m terrified I’ll be trapped in my body too soon. EDS is similar to MS in many ways.
I find myself screaming at the universe, “Why? Why can’t I get a break from my life? It has literally sucked from the beginning. Is this it? This is all I get? Pain, pain and more pain? Really? Well, FUCK YOU.” I’m moving up all my retirement goals to now and getting everything done before I can no longer walk, or I die of bladder cancer.
Read from the beginning:
Prologue : FamilyChapter 1: The Early Years
Chapter 2: Protector: 1979-1981
Chapter 3: Pre-Teen Years 1981-1987
Chapter 4: Teen Years: 1987-1993
Reality Bites - The Truth Reveals Itself
Chapter 5: University: 1993-1998
Chapter 6: Young Adulthood
Healing
Chapter 7: Parenthood: 2007-2017
Comments
Post a Comment
Thank you!