My Chronic Pain Journey

I am a chronic pain warrior. I have been diagnosed with Interstitial Cystitis, Vulvodynia, Neuropathy, Fibromyalgia, IBS, chronic Migraines, chronic Fatigue Syndrome, chronic bouts of Colitis, and chronic bouts of Esophagitis. None of these illnesses have a cure; only pain management techniques. You name it and I’ve done it!

My story is quite unique and begins with a bumpy start. If you are the faint at heart this may be the section to skip.

For two years starting at age 5, I was molested by a female who preferred to use sharp objects to injure me. Years later, I learned that this led to neuropathy in my vulva and bladder regions. Consequently, my entire childhood I was a ballerina and dance was my therapy. Although it led to a struggle with anorexia, it was my reprieve from internal bodily pain. Little did I know that food equalling pain had nothing to do with my appearance. At the age of 15, I was injured badly during dance class. I learned I could never dance again. This injury led to further neuropathy in my right hip. Additionally, I suffered from multiple sexual assaults and relationship violence situations throughout my teenage years that furthered my neuropathy. Moreover I had no idea that there was a storm brewing. At 15 it was easy to ignore. I began getting MRIs, CT scans, and everything that could possibly explain why my body was struggling against itself. No answers. 

5 years later, as a 20-year-old woman in college, my struggles began to increase in frequency and intensity. My studies began to fall into last priority, my relationships struggled, and sometimes my pain was so intense that I couldn’t move myself at all. Some days were filled with depression and intense fear, while others were simply beautiful.

After too many days and nights of my boyfriend picking me up off the bathroom floor and putting me to bed, I decided to become more proactive. I began seeing about 8 different doctors in my quest to feel “normal” again (I must add at this time I participated in psychotherapy for multiple years, which was an essential part of my recovery). My first diagnosis came from a doctor who just threw pamphlets at me. She explained that I have Interstitial Cystitis, which is incurable. She told me that I may be unable to work, I cannot go to grad school, I cannot have children, I cannot have a high stress life, I cannot exercise too much, and I have to change my entire diet. She was telling me that my hopes, my dreams, my plans, and my healthy body were gone FOREVER.

No exercise other than walking or very light yoga. No dairy. No citrus. No caffeine. No carbonation. No alcohol. No ability to sleep less than 9 hours. No two stepping with my friends. No future children. No becoming a counselor who travels the world to empower girls, boys, and women. No idea on how a significant other would want to love someone forever ill. No idea on how to keep up with school and my amount of pain and blood loss. No direction.

My senior year of college, and my first year diagnosed, was bumpy and lonely. My father and emotional rock passed away suddenly, I lost my most significant healthy romantic relationship, and I was terrified. I mainly had to learn how to cope with high pain levels (IC pain alone is compared to the pain someone with stage four cancer suffers). I remember starting my internship in crisis intervention, taking 19 units, living alone for the first time, and trying not to drown.

There is one day that is clear in my mind. I remember laying on the grass on my school campus studying. I sat and watched couples playing and laughing, groups playing different sports while talking, seeing people drinking alcohol, and listening to a group of women shame their perfectly healthy beautiful bodies. Losing who you are as a healthy person is a journey that never ends. I still see able bodied healthy people and miss that part of me. 

With the support of my family and faith in the Lord, I was fortunate enough to find a great doctor in my hometown in California and in the city I planned to move to in Texas for graduate school. Yes, I decided that even if it destroyed me I would not give up on the path God set me on to be a counselor. I underwent a bladder hydrodistention before leaving for school. This is a surgery where the doctor fills the bladder up with a chemical cocktail in order to stretch it almost to the breaking point while burning away the ulcers. This is meant to cause scar tissue to build in replacement for my nonexistent bladder wall.

At this time, I also tried handfuls of different medications. I cannot tell you the amount of weight loss and gain, hair loss, chronic vomiting, and dizziness that plagued these days. At one point I was lucky to consume a handful of dry plain cooked noodles. However off to Texas I went!

This is where I began taking Amitriptyline (Elavil) in large doses to help me cope with the demands of graduate school. Throughout graduate school I went through physical therapy for pelvic floor dysfunction, bladder instillations, acupuncture, massage, Chinese herbal medicines, and multiple different hormone therapies. How I passed my classes, began practicum (seeing clients), dated, made friends, and survived I still do not know. Well, as one of my brilliant professors always said, “social support is everything (Dr. Linda Rubin).”

Some days I can remember sitting in class, even my most favorite classes, sweating, dizzy, throbbing, burning, and almost unable to breathe from intense pain. Rightfully so, my yearly reviews encouraged me to speak out more and be more a part of my class environment. I had a daily struggle trying to manage my pain through meditation and breathing so I could speak up. There are times I walked through my front door at the end of the day and fell on the floor unable to move for hours. When I sought help through school disability they explained to me that our government sees graduate school as a privilege. Thus outside of a pass to leave to use the restroom frequently, there was no help I could gain from the university. Again, I was blessed to have some professors, supervisors, and colleagues who supported me even against the rules.

At this time my faith grew stronger as the pain grew worse. What I remember most about this time in my life is my practicum experience because when I am in the room with my client all else fades: my pain and my focus on myself, and everything seems the way it should be. My profession began as a way to help others and in the end it saved my life.

The worst part of this journey was watching my mother and closest family members struggle. My mother still struggles when she hears the word disability. I watched my family begin to cope well, and not so well, with the stigma, judgment, and cruelty we were facing with me being chronically ill and disabled. My friends began to struggle with my absences and frailty. Dating was just an absolute mess. The loss of another significant other due to his inability to cope with my illness cut off my hopes in that arena. 

Near the end of my graduate school career my body began to attack itself harder and faster. I was losing blood out of every orifice at alarming rates. I was doing everything ALONE. My last year, especially last semester, of graduate school taught me who I was; this new me that had strength in her weakness. It was the hardest and best year of my life. Although I still remember the day I gave up hope completely. At 11pm I knocked on one of my best friends’ door and fell onto her lap. I looked up at her after sobbing and said, “I can’t do this anymore. I can’t feel this sick anymore. I….can’t….do this….alone…” I had to learn how to reach out and ask for help.

I moved back to San Diego to be close to my mom, stepfather, and sister so I could have help trying to heal. Again, I began to reach out to new doctors, support groups, old friends, new friends, church, and myself. After months of unbearable pain and blood loss while in and out of the hospital on morphine, I am here today.

5 months of hell and here I stand, well mostly lay down. I have found amazing doctors who coordinate my care beautifully. This includes a urologist, OBGYN, Pelvic specialist, Vulva specialist, GI doctor, Pain Management doctor, and psychotherapist. I have been properly diagnosed, but there is still the knowledge I have every day that there is no cure. I am still undergoing huge medication changes after surgeries, procedures, and invasive treatments. I have made it past my mom having to hold me so I can go to the bathroom, dress me, shower me, help me attempt to use one leg at a time when I was unable to walk, and nights of keeping my sister awake from cries of pain. I still live each day at a 8-9 pain level, but I am living. Some days are brutal and it takes all of my strength to breathe, but on other days I can pick my niece up and run with my nephew into the ocean.

Of course there are many facets that make up a human, and this is only one part of who I am. However this is a huge part of who I am because each and everything I do comes with a cost. I am still behind in school for licensure in CA and some days I lay in bed crying in pain until noon. My condition may not be fatal, but it ended my life as I knew it at 20 years old.

I lost the woman who jumped out of bed in the morning, and instead began 
starting the day with blood loss and vomiting. However, I found the woman who gets up and takes 30 minutes to pray and meditate everyday. 

I lost the woman who can eat whatever she wants, but I gained a woman who eats for nourishment. 

I lost a woman who could stay up all night for days, but gained a woman who puts her body first.

I lost a woman who was always moving, but I am still a dancer and runner on my good days. 

I lost my gorgeous figure and everything that society deems worthy, but I am even better than those standards now. I am strong in my curves!

I lost the woman who could care for herself alone, but I gained a woman who can give and take in relationships every single day because she isn’t afraid to ask for help.

I lost the woman who could wiz straight through her Phd, but I am now Lindsey Mae Huber M.A. (soon to be LPCC-I).

I lost a fearful woman, and now I am afraid of nothing. 

I lost the girl who internalized her pain and beat up her body.

I gained a woman who is strong in herself, her goals, her needs, her relationships, her faith, and most of all doesn’t always hate her body.

Chronic pain took my life, but it continues to build me a new one.

<3 Chronic Pain Warrior