I finally made a blog!

People have been telling me for YEARS that I should start a blog, after everything I've gone through. "Everything" meaning, not only life's many traveling adventures, which I plan on writing about in the months to come, but also the medical triumphs and tribulations, my personal life with the kiddos and my sweet, supportive husband, as well as the emotional ups and downs of living in the United States as a disabled woman.

I'm so excited to finally be doing this! So, for now, I think I'll start with an introduction post: Hi there, Steena here. I'm a 38-year-old woman living with chronic pain due to a full spinal fusion, endometriosis, a severe chest deformity (pectus excavatum) that essentially squishes my lungs and heart, Marfan Syndrome, cannabis hyperemesis syndrome, and Delayed Sleep Phase Disorder.

I've had scoliosis all my life. They originally found it when I was in 4th grade. What was unusual was that, in my 20's when the curves were supposed to be stabilizing, they were only getting more severe. The last measurements of my curves, in 2014, showed that both of them had gotten about 20 degrees worse in only 6 years. The S-shaped curve consisted of a 60-degree leftward curve in my lumbar spine, and a 54-degree rightward curve on the (top-middle) thoracic. I awoke from surgery 3” taller, which certainly took some getting used to.

Years later, I mentioned to my cardiologist that my mom and uncle were told they might have a connective tissue disorder, but never went in to have a formal evaluation. But that they had both had major heart surgeries in middle age, they had both had eye problems, and were both very tall (which was highly unusual, considering their tiny Cypriot parents were only 5'2 and 5'6 at their tallest point in life). After telling him all this, he sent me for genetic testing, where I was finally diagnosed with Marfan Syndrome - a connective tissue disorder that affects the heart, eyes, spine, and - you guessed it - connective tissues of the body.

Back when I had my first set of surgeries done, they were convinced that fixing my spinal deformities would prevent me from becoming paralyzed, due to decompression of the vertebrae - not lead to a lifetime of daily, inescapable pain. I was told I'd be able to go back to my job, school, and my internship in just 2 months. I don't believe that my surgeon thought I'd have any of these long-term issues, and luckily, plenty of people who have had these type of surgeries do very well. But they also don't have connective tissue disorders, or have the complications after surgery that I did.

Nobody thought to tell me that the hormones I was on for endometriosis were dangerous in combination with the inactivity after a major surgery like mine. It was a deadly combination. I had blood clots lining my lungs (pulmonary emboli), which 1 in 3 people don't survive. I could barely breathe. It was terrifying. The doctors immediately put me on blood thinners, and took me off of my hormones. Anybody who has ever been on birth control will tell you that withdrawal bleeding is normal when you abruptly stop your meds. But after 2 weeks of injecting myself with blood thinners multiple times a day, the bleeding only got worse, and big blood clots started to form. I was soaking about 1 pad every 2 hours. I was so anemic, I could barely stay awake. After running back and forth from the hospital, I was given 2 blood transfusions and a plasma transfusion, but the bleeding wasn't stopping. I thought I was a goner for sure this time. At that point, the only solution was to do a Dilation and Cauterization procedure (a D&C). A very skilled OBGYN saved my life that day. I only really know about the details of this time in my life because my mom filled me in later. But at the time, I was so out of it, I could barely remember any of it. It doesn't help that trauma also has that affect on the brain, and this was all certainly very traumatic.

All that to say - My life as I had previously known it, was effectively over. In October of that year, when I realized I'd never be going back to my busy life, I had to move to Florida to move in with my mom, since I could no longer work and afford my NY rent, and I needed daily care. After all that, the first spinal fusion didn’t even work, and I had to have the entire thing redone in 2015. But that’s another long story I’ll go into in a different post. I never did to go back to any of those things, even though 39 of my MSW (Social Work) credits were already completed, and I'd only have had 1 year left of school before completing my degree. I was so excited to go into the field, as my mother had before me, but I was never able to go back and get my MSW. But hey, at least my loans were forgiven due to "total and permanent disability", so at least there's that. That also means that I'll never be able to get college loans and complete my degree ever again, because it would mean reopening those previously forgiven loans. I did look into paying out of pocket for school, it was more expensive than anyone on disability could ever afford, and the classes in the only local MSW program available were back-to-back 9 hours straight, which I couldn't physically handle anyway. During the time period I was looking into this, I had another back surgery scheduled anyway (January 2020), right before the whole world shut down due to Covid.

So, once again, thoughts of my education were put on the back burner. Most of those surgeries were a long time ago now, and I've since had to let go of the idea of the life I thought I was going to have, as a Social Worker, serving my community, in a career I could be proud of. If you had told me I was going to end up a stay-at-home wife and stepmom, I’d have laughed in your face, but here we are. Regardless of the daily pain, and the fact that I was stopped in my tracks at only 29, I am truly very grateful for what and who I have today. Most people end up in a different place in life than they originally expected, so I wouldn’t say that piece of my story makes me all that special. Anyone over the age of 30 will tell you that things will almost certainly look different from the original plans, unless you are extremely lucky, or extremely sheltered. Nothing ever turns out exactly the way you expect it to.

I’ve never been under the impression that things are supposed to ‘work out’ according to some kind of grand plan, or that I’m owed a single thing in this life. Horrible things happen to good people all the time, and vice versa. I just try to focus on what I do have, which is a LOT. A happy marriage, great step-kids, my own house, food security, a decent team of doctors, and the authentic connections I get to have with the people I care about. It's always been much easier for me to relate to people who have been through major, life-changing events, and used those experiences to learn and grow. I can still show up for the people I care about, only now, in an even more compassionate way. I still spend 80% of my day in bed, in pain. But now, I cherish the "mundane" in a way I never thought possible. I used to be happiest amidst the chaos, and even thrived in that environment. But now, I rejoice when life is peaceful. I'll never take it for granted again when things are calm.

I’m not going to pretend that I’m not still grieving the life I had when I was the ambitious, brave, busy person, with a mean case of wanderlust. Ok, so maybe I still have some of those parts of me hidden in there, somewhere. (I may still feel the itch to hit the road the moment winter seems to loosen its grip, and the weather starts getting warmer.) Which brings me to why I wanted to start this blog in the first place! Ultimately, I’ll get to share my travel adventures, my adventures in life, my medical updates, as well as tips for safer and easier travel for those of you who also suffer with chronic pain and multiple chronic illnesses. I look forward to sharing more of my life with you!

Gentle hugs,

Steena