Therapy for Health Issues and Chronic Illness in Seattle: My Health Story

Mar 25

I was a 12 year old, living my life in eastern Washington, excited, and nervous to go to summer camp for the first time. It was required to get a physical as preparation for camp. In my family, we never really went to the doctor because my grandfather was a retired internal medicine physician, and we would go to him for any concerns we had. So naturally, my grandfather did a physical exam to complete this camp requirement. I remember the day so clearly standing in his living room. “Oh wow” I heard him say, “this curve is pretty significant. You need to go see an orthopedist.” At this point I had never stepped foot in a hospital, a specialist’s office or an ER. Little did I know how things were about to change.

My grandfather sent me to an orthopedist who of course he knew and trusted. Turned out I had scoliosis, with a 65-degree curve of my spine. Fairly immediately I was offered to go see a specialist in either Spokane or Seattle. We went to Spokane because it was a shorter distance and got in with Spokane Shriner’s Hospital. Quickly into the exam at Shriner’s I was told I’d need surgery to correct such an extreme curve. I thought, “wow, um, okay.” “But” they said, “you’ll have to go through some standard tests before we schedule surgery.” Okay. At 12 years old, I just went and did what I was told, not really processing what was happening. Now I realize my exposure to kind, loving people in the medical community (my aunt is a nurse, my other grandfather a pharmacist) had led me to have innate trust in my providers. The battery of tests came back, including an MRI. There was another issue.

The MRI results showed a new concern. I was referred to a pediatric neurologist. He was so lovely. He spoke to me, not my parents, and even drew pictures on the paper of the exam table to clearly explain what was happening. I had what’s called a Chiari-malformation. Essentially, it’s a condition where the brain tissue at the back of the brain bulges through a normal opening and extends into the spinal canal. This led to me having a syrinx, a fluid filled pocket in my spinal cord. This put pressure on my spine and may have caused my scoliosis, but they can’t say for sure. They needed to perform what’s called a decompression surgery. I was lucky enough to not have any symptoms yet and it was only caught because of the routine screening before my scoliosis spinal fusion surgery. I was in the operating room a week later.

First Surgery: Chiari-Malformation Decompression

I remember waking up on my back. If I made small adjustments, I could tell my head was mushy. A big piece of my skull had been taken out. No more contact sports in my future, the bone doesn’t ever completely grow back. I was a tiny little 12-year-old, and they gave me way too much Dulcolax (stool softener). Let’s just say that was some of the worst 48 hours of my life. I was fortunate enough to have my mom by my side 24/7, ready with a bed pan at any moment, even though she didn’t always make it and then they’d have to come change the sheets for the millionth time. One weeklong hospital stay down. Eight months later, I went in for my spinal fusion.

Second Surgery: Scoliosis Spinal Fusion

If you ever get the chance to donate to Shriner’s Hospitals, please do. Yeah, they wear funny hats and I’m still not really sure what they are, but they help so many families. They mainly specialize in pediatric orthopedic care. They never turn anyone away due to lack of insurance or ability to pay. I had my spinal fusion there. By far the most comfortable and caring hospital stay I’ve had due to their commitment to helping kids and making it as positive of an experience as possible. My fusion spanned most of the length of my back. I gained two inches in height (yay) but had to relearn how to move, bend, tie my shoes, get out of bed, really everything. It felt like someone had laid a stack of a few phone books on my back. I believe the hardware weight totaled three pounds.

I went back to living, going to Spokane regularly for checkups. Everything looked good. I had great friends that were supportive. I was in middle school and had to have someone else carry my books and get out of class early so I wouldn’t be bumped in the hallways. Not so shabby. Only once did a kid call me the ‘humpback of notre-dame’ and I just thought ‘what a dick.’

Life was living. Physically I was doing fine. The Chiari decompression surgery stabilized that condition, so I didn’t need further surgery for that. My fusion was deemed ‘successful’ and I went on living life thinking the bulk of my medical journey was behind me.

Third Surgery: Fusion Hardware Removal and Infection Treatment

It was 2007 and I was attending community college, about to finish my AA and transfer to a four-year university. I started feeling some back pain. It continued to get worse and worse. I got x-rays, exams, everything seemed fine. They sent me to physical therapy thinking it was a muscle problem. This didn’t feel muscular. I was fearful my hardware had broken. For six months, I was experiencing intense, localized back pain. I was visiting Seattle to look at schools when a lump developed on my back. I got home and went straight to my doctor. He took a biopsy and said he’d get back to me in a few days. A few days later, I got a call with a concerned doctor voice over the phone he said, “go to the ER right now.” It was an infection. A serious one. I had the option of going to my beloved Shriner’s in Spokane (even though I was 19 at the time because of continuity of care they were open to seeing me) or to Harborview in Seattle. Unfortunately, the Shriner’s doctors were at a conference in Florida, so Harborview it was. My mom and I quickly packed up and drove the four hours over the mountains to Harborview ER. They were expecting us and took us back swiftly. Wow, I thought, there are more cops here than patients. The guy next to me was handcuffed to the bed and not happy about it. A resident comes in, “Hi Chelsea, I have to make sure you don’t have any spinal damage and we do that by doing a rectal exam.” Hi, um, excuse me, what? Haha. My innocent 19-year-old self was speechless.

After a few days of waiting to get into surgery, fasting to prep and then whoops another trauma of higher priority came in, I was swept into surgery. I had never even known taking out my hardware was possible let alone a realistic possibility. But I had a severe infection, so they had to come out. Needless to say, this was a lot to process. Post op was a blur. This surgery was by far the most painful and the one I remember the least. I have a few flashes, including post op they had to take me for an x-ray and I remember the nurse being a bitch and I sobbed because I was in so much pain. I remember swelling up from some medication and getting ready to be discharged after a week. I couldn’t wear my own clothes and had to borrow some to go home. I don’t remember the drive home. I had to get a pic-line, a semi-permanent IV to get intravenous anti-biotics to fight my infection. It took a few tries to get it in successfully. It was the middle of summer in hot eastern Washington, and I could not sweat due to the pic line, so I stayed inside, only going out early in the morning for some fresh air.

I was afraid I wouldn’t make it to graduation and subsequently make it in time to transfer to university. But somehow, I did. I kept up with my intravenous anti-biotics until one day I developed a severe rash. It grew and grew and became more and more painful. We went to the ER not once, but twice as I was having what they call ‘red man syndrome’ as a reaction to the vancomycin I’d been on for months. My entire body was covered in an open wound. The palms of my hands were so raw I couldn’t hold a fork. The bottoms of my feet hurt so badly it hurt to walk. This medicine was supposed to be helping. They switched me to another anti-biotic to finish my treatment. I was thrilled to get that thing taken out of my arm eventually.

Chronic Issues Moving Forward

Life went on. I went to university and continued my journey. Everything seemed okay until MLK day 2009. My stomach blew up as if I was six months pregnant. I had some bad abdominal pain as well. Long story short, for years I looked for answers. I saw over nine GIs, had a colonoscopy, drank and did all the things. I’d hear, ‘oh it’s IBS.’ To me that just meant they couldn’t figure out what was wrong. It wasn’t until a few years ago when I found my amazing, wonderful current doctor (shoutout to Kara Menzer ND) that I was taken seriously and actually had an ally who was committed to helping me find solutions for my symptoms. No one has ever said this to me directly, but I believe the months of intro-venous anti-biotics saved my life, but destroyed my gut in the process, causing permanent damage. I never had gut issues before this.

If you’ve gotten this far, wow, thank you for ready my story. Today I continue to deal with the ramifications of my medical challenges but have them decently managed. My body isn’t as carefree as other people my age, something I’ve had to process and accept. Much of my time, money, resources, and energy goes towards managing my physical and emotional health. I’m very grateful things didn’t go worse for me as they easily could of.

Through my health challenges and medical experiences, I am who I am today. I honestly don’t believe I’d have the same level of empathy, compassion, and mindfulness that I do if it wasn’t for my health challenges. I’ve done a lot of observing over the years. This is a significant part of what led me to become a therapist. I am fascinated how some people face hard things and thrive while others struggle. I’m fascinated about the fact that humans so desperately want control but that all we can do is influence our lives, not control them. I hate that women aren’t believed when they speak up about symptoms. I’m passionate about the fact that as humans we are so much more than our physical abilities and want to fight the ways both the patriarchy and capitalism tell us otherwise. I’m passionate about women taking up space and owning it. I’m passionate about each person defining what ‘health’ is to them and embarking on that path.

I share my story so that you can understand what’s led me to this point. I share so that you know why I’m so passionate about empowering women to thrive, especially when facing health challenges. If you need a companion and advocate to witness your journey or walk alongside you as you face change and challenge, please reach out. You can schedule a free consultation and we can discuss ways I may be able to help.