First off, thank you for taking the time to visit my blog! If you are interested in hearing a bit more about my personal story…here is a wall of text for ya!
My name is Alix and I am a woman living with PTSD, Anxiety, and Multiple Sclerosis.
My story started twenty-five years ago. I had wonderful childhood and have so many fond memories of growing up with my two siblings and wonderful parents. I was a lucky kid. My childhood years were filled with love, laughter, books, family and friends. I developed a passion for animals at a very young age. I got a puppy with my family when I was in eighth grade and dogs have been a very important and central part of my life ever since then. You might see my dog (Sir Mac N Cheese) featured in many of my photos. I also enjoyed riding horses, doing community theater and dancing as a child.
When I was a freshman in high school I met a man through community theater who was in his twenties. I was fourteen at the time. This man became very close to me and despite my parents efforts to keep him out of my life, he inserted himself into it very deeply.
This was not a healthy relationship. At the time I did not understand what everyone was so upset about, if we cared about each other why couldn’t we be together? Looking back I can see that this relationship was not about caring for one another, or love or anything good.
He was abusive, manipulative and dangerous. I endured years of emotional and sexual abuse from him. Most of the time my parents did not even know I was still seeing him. He taught me to lie and sneak around. I was only a child. This lasted from the age of 14-17. I have about 1.5-2 years of that period that I cannot remember. It is simply blacked out. This is a common phenomenon when someone experiences something traumatic, the brain chooses to just block it out rather than let it continue to hurt. Sometimes I have flashbacks and small memories will come back to me. I lost almost all of my friends when I stopped talking to them at his request. I damaged my relationship with my family when he asked me to. I didn’t see that he was isolating me from everyone but him.
The last time I saw him was to say goodbye, shortly after my seventeenth birthday, when I realized how messed up he really was and how much he was hurting me. I was tired of sneaking around just to see him and I was tired of feeling broken, used and depressed. The last time I saw him was the final time he assaulted me.
It took me a very long time to tell anyone what had happened. It took years, in fact, before I told my family the whole story. I am sure that there are some friends and family who still don’t know the whole horrifying truth. This man caused a lot of damage to my mental health. I developed severe anxiety around the age of 16 and thankfully, my parents knew the signs and brought me to a doctor. I was able to start a medication that helped keep my anxiety under control for a long time.
I moved to Chicago and got my degree in the Theater Performance. I loved my time in Chicago and will always think of the city as my second home. I was able to discover who I was and start to learn the kind of woman I wanted to be. I lived in Chicago for about five years before I moved back to Minnesota, to be closer to my family.
Shortly after I moved back my anxiety took a severe turn for the worse. Maybe it was being back near some of the places that the abuse had taken place years earlier? Maybe it was the fact that I had never sought any counseling or help for the horrors I had endured. Maybe it was because I was still hiding my story from so many, as if it was something I was to be ashamed of.
But then something wonderful happened. I met my (now) husband. We met through mutual friends and it was pretty much love (or at least ‘like’) at first sight! We have been together since the night we met.
My husband helped me through the lowest point of my mental health and encouraged me to seek professional help for the things I had, and still was, going through. I was having panic attacks on pretty much a daily basis, insomnia, and horrible nightmares. I had no energy and struggled to attend even the smallest social gatherings. All signs of PTSD. I started seeing a psychiatrist and going to therapy regularly a couple of years ago.
I cannot emphasize enough how important it is to treat your mental health just as you would treat a physical health problem. You need a care team. If something is not right sometimes you need medication, therapy, meditation or countless other healing practices that can help repair and strengthen the body and mind.
I was diagnosed with PTSD due to the sexual and emotional abuse I experienced as a teenager. I was also diagnosed with anxiety (which I already knew I had, but wasn’t managing it with the right medication) and Panic Attack Disorder.
With the help of my Psychiatrist and regular visits with him I was able to change my medication, address some underlying issues, and get my anxiety back to a good (not perfect) but good baseline.
But then, the unthinkable happened. I woke up one morning with tingling and loss of feeling in my right little and ring fingers. I figured I had just slept on my shoulder funny and that it would go away as the day went on. I got ready, grabbed my morning coffee and headed to work. Later that day I realized that the numbness and tingling wasn’t going away. It was spreading. By the time I went to bed that night it had spread throughout all of my fingers, my hand, and was beginning to creep up my arm. The next morning when I woke up I couldn’t feel my toes or right foot. It was time to go to the doctor.
I made an appointment with my primary care physician and she had me transferred to a nearby hospital to have an emergency MRI. I still remember the look on her face when she told me that my symptoms suggested a neurological issue, rather than something like a pinched nerve. I still remember crying in that tiny room at the doctor’s office as she offered me tissues and told me that we would “get this figured out”. I remember noting that she didn’t say “we will get you better”.
The MRI presented multiple lesions in both my brain and spinal cord. I was referred to a Multiple Sclerosis Specialist. After an EKG, eye tests, cognitive tests and literally more viles of blood drawn than I could count on my fingers and toes I was told that I most likely had a disease called Multiple Sclerosis (MS).
My world changed forever the moment I got that phone call. I called my husband (then boyfriend), I called my Mom, and I cried. I was scared. You always hear about diseases like this but you never think it is actually going to be you who gets one. No one goes to bed imagining that the next day they will get sick and never get better. It was surreal.
I was initially diagnosed with Clinically Isolated Syndrome (CIS) in November of 2017. CIS is the first documented attack of MS. MS can be very difficult to diagnose, and is an autoimmune disease with no cure. Doctors do not make the diagnosis of MS lightly. I had two rounds of steroid infusion therapy in December and again in January to try to repair some of the damage the lesions in my brain and spine had caused. I am so grateful that I regained most of the feeling back in my right side.
Six months after my diagnosis of CIS I started to feel sick again. I was losing more and more sensation in my right foot and my fatigue and brain fog were through the roof. I went back in for another MRI, which showed a new lesion and continued activity of the other lesions.
My neurologist officially changed my diagnosis to Relapsing Remitting Multiple Sclerosis in May 2018. I started a disease modifying drug (Glatiramer Acetate) soon after, which requires me to inject myself with the drug three times a week. Fingers crossed this will help slow down the progression of my disease!
This diagnosis has been very difficult for me and my family. I have had my days where even getting out of bed and trying to take a shower leaves me exhausted and bed ridden for the rest of the day. But I have honestly also had some of the best days of my life since the diagnosis.
The week after I was diagnosed with CIS my husband asked me to marry him! In a time when some men would have run in the other direction he ran towards me. He showed his true qualities of loyalty, compassion and bravery. I am truly a lucky woman to have such an amazing life partner by my side. We decided to get married immediately (for health insurance reasons) and to have the big ceremony and reception in a year or two when our lives had calmed down a bit. We are set to have our renewal of vows in fall of 2019.
Since my diagnosis I have also seen the power of love. At my weakest moments my family has rallied around me and shown me so much love and support that it makes my heart glow. I get so much strength from the love and encouragement that my family is constantly showering me with. Again, I am a lucky woman.
I started this blog because I wanted to connect with others who knew or could empathize with what I was going through. MS is a tough disease, coupled with my PTSD and Anxiety I was having a rough time. Being able to write and have a creative outlet for my feelings has been absolutely amazing.
I am working on mindfulness and living each day fully present and thankful for the gifts I am given. If I chose to focus on the negative things going on around me (and in my own body) I could drive myself crazy. So instead I choose hope. I choose love. I choose positive and healing energy.
I hope that my blog can inspire someone going through a hard time, educate people about Multiple Sclerosis and chronic illness, and bring a little understanding to this mysterious amazing adventure that we call life.
“Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.” — Albus Dumbledore
2 thoughts on “My Story”
It is a pleasure to meet you. I am enjoying your positive views on life with MS and I agree… it is only a part of us. We still call the shots in our life so we can make the best of it so long as we choose to. Your youth has made you strong. You are an inspiration!
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Thank you for sharing your story, Alix. As well as your hope, courage and strength. I am very much inspired.
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