“With that newfound confidence and beauty, I worked with Caroline Malouf an incredible photographer to have some boudoir photos taken. “
Hello, my name is Jen. My life and experiences have been far from normal. I did not know though how unique and challenging my life has been until recently. With the help of my parents, I am telling my story. I was injured at the age of 15 and became masterful at hiding my pain and making myself appear normal and not suffering when all along every day was a constant struggle. Even my parents did not know this until recently.
I am one of a set of identical twin girls; that was born by c-section weighing in at 6 lbs and 3.5 oz. My identical twin sister was 6 lbs 9 oz.
Jennifer has a younger sister as well.
What seemed to knock my health off its axis started in 1997 when I was hit very hard by another high school student which not only knocked me cold but also dislocated my left kneecap completely to the outer side of my leg. The doctor just slid the kneecap back into place. From that point on I had knee surgery after knee surgery on that left knee. I struggled to do simple everyday things like doing stairs as the pain in that knee joint would just not settle down. I was on high doses of Ibuprofen, Tylenol, Codeine, and Oxycontin to get through the day every day. I was an elite athlete and was part of a world-class curling team. I was constantly pushing through pain and hiding it from even those that loved me the most.
I was married in July of 2005 and gave birth to a little girl (8lbs 15oz) on November 24, 2009. This birth was very hard on me and it seemed after the baby’s birth my joint pain became more painful. I continued to be on high amounts of OxyContin. I had an allergic reaction to Ibuprofen and went into anaphylactic shock so the doctors just kept increasing the amount of Oxy I was taking.
In August of 2011, I dropped an extreme amount of weight not by choice. I was often feeling lightheaded and dizzy. I also had right back pain. Upon a visit to my family doctor, they found blood in my urine (but no infection) and gave me anti-nausea pills for dizziness. This continued for many years with no real explanation or specific treatments from the doctor.
In August of 2013 after 10 other knee surgeries, I underwent a procedure on that leg called a High Tibial Osteotomy. The surgery pretty much consisted of cutting my leg in half below the knee and realigning it using a piece of my hip bone. They also replaced my cartilage and meniscus with those from a cadaver. The procedure appeared to go well, however, during therapy scar tissue formed and locked the knee up. I tried tirelessly and painfully to get the knee to bend on my own. I used to place a dog leash around my ankle and pull as hard as I could until I passed out from the pain. I was unsuccessful and had to be put back under anesthetic so that the doctor could force the knee to bend and break up the scar tissue. This procedure created a left hip labral tear. The doctor went in and operated to refix the tear on May 22, 2014, however, my pain in the hip continued. He then went in a second time on Sept. 25th of 2014. During this whole time, I remained on pain medications at the highest dose possible. I had a lot of inflammation in that joint but could not take anti-inflammatory medications due to my allergy to them. I tried various methods including Lidocaine and cortisone shots but nothing worked. In January of 2015, I had a CT scan done on my hip and the therapist indicated from reading the notes on the CT report that it appears there is not enough blood flow to the femur head which is causing it to die.
The pain in my hip kept getting worse, however, my husband changed our insurance from a PPO to an HMO and my preferred doctor was no longer in my network. I continued with physiotherapy and the therapists used strapping to hold my hip in place.
I kept going to Orthopedic doctors within my new insurance network and had a hip replacement surgery scheduled for June 6 of 2016. At the last minute, the insurance company pulled the surgery and said there was no evidence of arthritis and due to my young age the insurance doctor said that I did not qualify for the surgery. They just put me on more pain meds and sent me home. This totally crushed me! The pain was so bad that it sent me into a deep depression.
I could barely walk as the pain in my hip was debilitating, it felt like my hip would pop out all the time. I could not lay down on that left side as the pain was unbearable. I continued to be prescribed Oxycodone for the pain. From time to time I would get a cortisone interjection as well. I often felt dizzy and nauseous yet no doctor would treat the hip. I ended up trying to go to the Mayo Clinic to see an Orthopedic doctor there, but he could not find anything with the hip, the typical tests did not show signs of arthritis, but also do not show inflammation however; they did notice multiple lumbosacral perineural cysts.
Eventually, I was able to change my insurance back to a PPO and went to see the top hip specialist in California. In his initial testing, he found no Arthritis and was unsure if a hip replacement was the answer, however, he did perform a hip replacement surgery on me on May 5, 2017, and in his notes, he was astounded by how much inflammation was found in the hip region. In fact, there was so much that he was uncertain if the hip replacement would hold. I continued to suffer from pain during the rehab of the hip as well as now able to continue the rehab from my knee surgery. Delaying the hip replacement caused me more problems. I remained on pain medications for much longer after surgery due to the inflammation. Shortly after this surgery and the continued use of pain medications, it felt as though my body was shutting down. I was having to take other medications since I was no longer absorbing essential vitamins.
I started going for blood work every month and eventually every week but the results continue to baffle the doctors. I eventually weaned myself off the narcotic medications and I thought I might have turned a corner for the better. Coming off the pain medications was one of the hardest things I had to do. The withdrawal was very intense. Not only that but I had to continue to work two jobs to support my daughter and husband. Once off the meds, I thought I was in the clear however I then started blacking out and was referred to a cardiologist who placed a monitor in my chest. I had also found out through my hip surgeon’s notes that there was stress on my heart during the surgery and my blood pressure dropped dangerously low. I don’t know if this was a result of all the narcotics I was on and the effect they may have had on my body. The Cardiologist was very concerned because my heart had a lot of fluttering and quick beats or missed beats.
I was also put on various other medications as my doctors could not figure out what was going on so their answer was to throw medication at me. There were days my face, hands, and feet were extremely swollen. I was often sick and lacked energy. I was sent to see a hematologist and oncologist to try and determine why my blood counts were so out of wack.
I have seen four Hematologists/Oncologists, and no one has been able to explain but yet again they placed me on more meds this time it was a chemotherapy treatment.
I have been rushed into the emergency room several times with chest pain. An analysis was done and I was told that my organs are suffocating there is not enough oxygen-rich blood getting to my organs.
I have had three heart procedures done and the last one I coded twice on the table but they were able to bring me back. This has been terrifying especially due to COVID I have not been able to see family as they all live up in Canada. Not only am I still having heart issues but my kidneys are not functioning properly either.
My Dad suffers from a rare disorder where he would have unexplained allergic reactions. Each time the allergic reaction got worse than the last. It was upon my Mom’s research that she found out about Mast Cell Activation Syndrome, but this took months and months to figure out.
Not only have I been suffering from health issues but my husband left me as he could not handle the continued health issues. He says that because of all my health issues and working to support the family I was never there for him or my daughter.
I have been in severely dark places and contemplated ending my life because I could not handle the pain. I felt as though I had to hide the suffering. I was not supported at home and I felt as though if I hide the pain home life would be better. I wanted to try and give my daughter a normal childhood and did not want her affected by how sick I was. There were times I would take the family to Disneyland and was in so much pain I would go into the bathroom and cry my eyes out. At home, I would sleep on the couch and cry myself to sleep because I was struggling with pushing everything down.
Even through all the health struggles, I have found a light and the strength to continue to push forward. That light came from an incredible man named Rob. He has been the support I needed and has lifted the weight of worry and given me something to look forward to and given me a positive outlook for the future. I have been away from family and my home of Saskatchewan since 2005 and have always felt homesick. With Rob, my heart is finally at home.
I have found the love of my life and a partner that has turned my world from a dark place to a place of hope. Rob is a rare find who supports me, loves, and cares for me as I have never experienced before. He has also brought out the confidence and beauty that I did not know existed. I now look at my scars as a thing of beauty as they are the past that I have had to survive in order to live and find this man I had no idea existed. Even though I may have a tough road ahead with treatments, heart surgeries, and various other procedures I know I have something to live for and fight for!
With that newfound confidence and beauty, I worked with Caroline Malouf an incredible photographer to have some boudoir photos taken. Rob was having to go to Montana for work and I wanted to surprise him and give him something special. Caroline and her team were so incredible to work with and brought out even more beauty and confidence. This will be something I will always remember, and the photo album is something that Rob will forever have. He was so surprised and thought that the photos were so incredible and special. We try our hardest to spend every moment together but if we are not able to this will be a keepsake that he will always have.
I want to live and thank my parents Sandra and Keith. I finally was able to show them the hurt and pain I was in and they embraced me and have been fighting next to me even though they are far away. The Facetime calls gave me strength. Finally being able to wrap my arms around them in June was a God send. I cannot thank them enough for the support they have given me.
To Rob, I am so excited for our future together. You are my light and I truly believe that God has put our paths together! If I had my life to live over again, I would find you sooner so I could love you longer! I fell in love with all of you. I didn’t just fall in love with the best of you like the way your eyes light up the room, the way you laugh makes me smile, the way your hand fits in mine, the way our personality stands out, the way your smile gives me butterflies or the way your body moves. I fell in love with the way you make sarcastic remarks, the way you feel helpless at 2 am, the way you cry about something from years ago or a song that we hear together. I fell in love with the great in you! I love every part of you!
Leave a comment