Living with Chronic Pain

This post is about a highly sensitive topic for me. It's sensitive because I don't like to dwell on it for too long. It's as much a part of my life now as the air that I breathe. For a long time, I became very emotional anytime someone brought it up. It’s true what they say, when you're diagnosed with an illness that you will be battling for the rest of your life, you go through the five stages of grief. A part of me was left behind at that moment in time. When I was 25, I felt like I was going to live forever. I never contemplated my mortality until all of this began. I'd mourned the loss of my grandmother who became paralyzed after a fall, but this was different, I was mourning my innocence. Now, after having reached the stage of acceptance and also because my current medication, Tysabri, suits me exceptionally well, I can say with humility and gratitude, that I would not alter my diagnosis. I say this with certainty because the diagnosis set off a chain of events that enabled me to grow into the person that I am today, and I truly like today.

I was diagnosed with Multiple Sclerosis (MS) in the summer of 2012. It took me a long time to accept this diagnosis because I tested positive for Lyme simultaneously. My symptoms started with vertigo and dizziness on my flight to visit my best friend in Milwaukee. I enjoyed hiking and camping quite a bit at that time, so Lyme just seemed to be a more appropriate fit. Today, I’m much more hesitant to go camping after everything that’s happened, but breathing fresh, unadulterated air and looking upon the beauty of nature will always feel magical to me.

                                            

Diagnostic confusion associated with MS is relatively common. Multiple Sclerosis literally means “scar tissues in multiple areas.” In other words, I have multiple lesions in my brain. The areas where there is no myelin or a lack of myelin are called plaques or lesions. The label does not provide any additional context about the root cause for these lesions. My neurologist agreed that we needed to go through the proper course of treatment for Lyme, but he sensed this was something more. Infused antibiotics alone were not going to address what was going on with my body.

The MRI showed inflammation in my brain and in spite of being treated for Lyme, I had a relapse. I believe this is why they say everyone's MS is different. Everyone's root cause is slightly different, so the manifestations are as well. This whole process has helped me learn to accept that which I cannot control. I’m still learning that I won't always have clear answers to all my questions in life, and that’s okay. This is an important lesson for everyone living with chronic pain because our only other option is to fixate on the unknown and stress about it, but that can only worsen the situation since stress is the biggest trigger for flare-ups.

My first relapse has been the worst one to date. My neurologist wanted to start me on corticosteroids to address my symptoms of imbalance, muscle weakness, numbness, and tingling in my extremities, but I’d gone to Chicago to meet with two of my aunt’s colleagues to make sure I was given the proper diagnosis before I started the course of treatment. My family operates like a well-oiled machine when it comes to providing support, especially medical support since there are so many doctors among us. At one point, humbled by the love and level of support, I mapped out our family tree with everyone’s strengths and concluded that together, with our networks, we could address not only issues that arise in our family, but the world at large.

As soon as I started having symptoms and told my mom, she immediately called her older sister, an anesthesiologist, who subsequently phoned up her colleagues to get me appointments with renowned specialists in Chicago at no charge. These doctors looked at my scans, did some tests, and agreed with my neurologist in DC after speaking with me about my symptoms at length. The whole family was a lot more comfortable with the diagnosis now. However, the delay in treatment worsened my symptoms to the point where I could no longer feel my right leg or arm and had a lot of difficulty walking.

I was rolled onto and off the flight back to DC in a wheelchair, an experience that left a lasting impression on me. It was the first time I looked at people who didn’t see me; they only saw my disability. It’s not that anyone was rude, it was more about how they interacted with me. No one spoke with me unless it was necessary because I think the wheelchair made them uncomfortable and when they did, they spoke to me like I was a child with a look of pity in their eyes as if the wheelchair lowered my IQ. I made a promise to myself to never look at anyone in this manner and to learn their story instead of imposing my own fears into how I interacted with them.

The thing about firsts is that you don't fully know what to expect, so you start imagining the worst-case scenarios. Now that I had a diagnosis, the Googling began. The internet is a mirror in many ways. It reflects what you bring with you, so it can be a dangerous wormhole that will provide you with a lot of scary results you should probably avoid with a vague diagnosis like MS just as easily as it can provide you with stories of hope and perseverance depending on your state of mind. My doctor told me to do what I could to avoid stress during and post recovery. My glass half full personality was about to be put to the ultimate test. I didn’t know how I was going to avoid stress when the federal contract funding my job was coming to an end and the drama from my previous relationship was still ongoing. I was on short-term medical leave from work and felt like the walls were crumbling around me.

The two-week course of steroid infusions I was prescribed sent me on the wildest roller coaster ride of emotions. This ride was coupled with insomnia and a consistent metallic taste in my mouth to make matters worse. My parents and my sister were walking on eggshells around me because anything could set me off like the time, I threw all of the food my mom cooked for me out simply because she asked me what I ate earlier that day and made a comment about me needing to eat healthier now. I knew I needed to change my eating habits, but I could not stand to hear anything negative even if it was true. I took staying positive as a mandate that needed to be protected with rage and aggression. I did not have any filter for the time being; it was like I had no control over what I said.

I remember purposefully picking up telemarketing calls so I could listen to someone talk about mundane things that had nothing to do with MS like the weather or whatever they were selling. I had long conversations with them only to tell them I wasn’t interested in purchasing their product at the end of our call. My family banded together and turned me into their all-hands-on-deck mission. I insisted on maintaining my independence and continuing to live by myself in my studio apartment in Dupont Circle which meant they were all taking turns to come to take care of me. The highs on steroids made me feel like I’d taken ecstasy and discovered the meaning of life while the lows had me feeling like my existence had no purpose, and I found myself holding my breath underwater in the tub while deliberating whether it was worth going up for air. The only thing that calmed me during that time was pouring all of my energy into and focusing on drawing or painting. It's difficult to keep ruminating on your problems when you're focused on creating, and if your problems stay with you, you can incorporate them into your creations. I believe this is why I loved drawing images of Lord Ganesh, the remover of obstacles, at this time. It helped me to be completely engaged to the point of being in a near-meditative state.

                         

The neurologist tapered me off with oral steroids after the infusions ended. I was able to walk now, but the mood disturbances that I experienced with the infusions began to spiral downward into a depression. I was warned this might occur by my doctor, but I was still caught by surprise when it started because it's not like the symptoms were vastly different from what I was already experiencing. It pained me to get out of bed and I had insomnia before as well, but the emotional breakdowns and crying spells were new. I was so focused on curbing my rage after the steroid infusions ended that I didn’t pay attention to my deteriorating mental state. I became so accustomed to putting on an act for everyone's benefit that I could barely tell what was real at that point. I knew that my parents and sister were always worried about me, so I did my best to assure them I was doing okay. It was a consistent internal battle. I just wanted to run away and be in solitude, so I wouldn’t have to worry about interacting with anyone. What I failed to realize is that my family was going through all of this with me too. I was making it worse for them by not opening up to them, especially my Mom.

Friends and family, near and far, visited and flooded my inbox with messages of love, concern, and hope when they heard about what was going on. I had tremendous levels of support; I could not have asked for anything more. I didn’t want to make it public knowledge by posting to my social media because I was still feeling so much that I didn’t know how to put any of it into words and I didn’t want anyone’s pity. I had friends of all faiths praying for my well-being, so I figured I was covered as far as God was concerned. I consider myself to be a spiritual person; I started practicing meditation during this time to calm myself during my manic or depressive states. I believe all religions have something I can learn from, and it’s not a competition. Even though I was raised a Hindu, I relished in the opportunity to understand a religion that is not my own a little better. Worship and religion are cultural from my point of view. Practicing faith and believing in a better tomorrow is a choice we make every single day so whatever you do to make that choice is your prerogative.

Legacy is not something you think about too much at 25, but I was becoming obsessed. How was I going to be remembered? I wanted to take the time during my medical leave to figure out what I was meant to do here on earth. I read E.F. Schumacher’s “Small is Beautiful: Economics as if People Mattered” and felt inspired to do something to address the “casino capitalism” that plagued our planet. I’m an Economist by study, but I never wanted to work as a traditional economist because I think the underlying assumption that humans are rational is inherently flawed. Emotions drive my decisions much more than rational thought.

I reached out to my friend that I met in DC who started an NGO working with youth internationally to train them in Entrepreneurship and my cousin who had been inspired to start a company to help organizations monetize their carbon credits to curb carbon emissions. I asked them if I could help them with their respective missions because I wanted my legacy to be about developing communities of stakeholders to progress toward a more sustainable future. It was important to me to keep my mind occupied and inspired. I was desperately trying to find something that made life worth living and what better way to do that then to help others. Both of them knew what was going on and wanted to keep me engaged in their endeavors so they started sending me material to read over and asked for my input throughout the remainder of my medical leave.

The next item on the list of to-dos for MS was to find a medication that suited me. I tried Copaxone followed by Rebif for a few months, which are both injections you have to self-administer. I had mild flare-ups with both; I experienced imbalance and numbness in my extremities again. The follow-up MRI showed the inflammation was spreading, so my doctor recommended I try a new pill that was on the market, Tecfidera. It came with a lot of hype and fanfare in the MS world. I was pleased to hear about it since it meant I would no longer have to inject myself. He was also able to confirm that the type of MS I have is called Relapsing-Remitting MS (RRMS), which happens to be the most manageable type of MS affecting 80% of all MS patients. My depression was ongoing, but I was on medication for it. It made it easier to get out of bed, but I didn’t feel like anything was fixed. All it did was numb me to my emotional pain. I was merely going through the motions of life. I was still spending time with family and friends, but I wasn’t fully present.

One day in early December of 2012, I decided to take a break from my pity party to attend my friend, Ricky’s birthday party. He loved to have a good time and I knew dancing at Napoleon’s late night was his favorite, which was exactly what I was looking for that night. I wanted a night off from thinking about my problems. I will celebrate this day for the rest of my life now because this night was also the beginning of the rest of my life in some ways; I met my husband, Mat, that night.

I told Mat I had MS toward the end of our first official date a week later because I didn’t want to mislead him. He lived in Baltimore, and I knew I wasn’t going to travel up there too often with everything going on in my life, so I wanted to be honest and leave it up to him. He didn’t have any overt reaction when I told him; he just responded by saying he doesn’t know much about it but has an aunt that has it and that he would look into it further. He also asked me what the worst that could happen is and I told him if it becomes progressive, then I could become paralyzed. He responded with a smirk saying “So you’re saying you’d finally start moving as fast as me since I’d be pushing you around in your wheelchair?” I started laughing because I remembered I was complaining that he was walking too fast the night we first met and that he needed to be more considerate of my short legs and that I was wearing heels. I didn’t know what type of reaction I was expecting, but this was the best kind. I didn’t know if this would turn into anything serious then, but I knew I wanted him in my life. He was a wonderful listener; I loved his temperament and his passion for his work. Our relationship still has its ups and downs today like any other couple, but the MS is not the focal point. It’s become a part of his life too, and he has to work at living with it just like I do.

I’d gone back to work a few weeks before the birthday party and was trying to stay positive while things were wrapping up. I didn’t have anything lined up following the end of the contract. I was monitoring the debate about the Affordable Care Act in Congress closely because I didn’t want to force myself to join the corporate world. I wanted to work with my friends who started the NGO or my cousin who started the company, but they didn’t have sufficient health insurance options, and I knew I needed good health insurance now. I started looking at places I might want to apply to, but I didn’t know if the MS was something I should tell future employers about or not. The large consulting firms ask if you have a disability in their online application and list MS as one of the examples of disabilities. They provide “I do not wish to answer” as an option, but isn’t that the same as saying yes? Even though they clarify that my response will not be a factor that is taken into consideration when they’re reviewing my application, then why do they ask? I had MS, but I wasn’t disabled.

I found myself having difficulty concentrating at work. One day, I started seeing spots in front of my eyes and had to lay my head down because I was so fatigued. I booked an appointment with my neurologist for the following day where he told me Tecfidera was clearly not as effective as he’d hoped since I was having additional symptoms that I didn’t previously have. He told me about another medication, Tysabri, that was proven to be very effective, but it came with a higher risk, so he liked to use it as a last resort. This medication increases your risk of getting a rare brain infection called progressive multifocal leukoencephalopathy (PML) that usually leads to death or severe disability. I tested negative for the precursor of PML, JCV-virus, so I was given the green light to begin. It’s an infusion that I receive every 28 days. 

As I look back on my MS journey, I see it filled with blessings along the way. ACA ended up getting signed into law, and I was able to pursue the path I wanted to create for myself. I was able to get affordable insurance that covered my pre-existing condition through the open market and work on the projects that inspired me. I met my husband who loves me unconditionally and helped me create my son, the little person who lights up my day every single day. I was able to cultivate a more honest relationship with my parents, and my family is closer than ever. I don’t know what tomorrow will bring, but I know that I have all of my ingredients necessary to face it.

I didn’t write this to say everything is perfect. I still don’t know what I want to do with my life. I’m still searching for my mission. At my last infusion, one of the nurses accidentally told me I was JCV positive which meant the chances of me contracting PML were significantly higher. Even though it was an accident and she clarified that she read it wrong just a few minutes later, it was a wake-up call that scared me so much that I’m going to meet with my doctor to discuss alternative options for treatment. I’m tested for the virus regularly, but now I have a son, and I don’t want to take any risks. I’d rather deal with the symptoms than leave his life too early.

I wanted to share all of this because I know there are many others out there who are struggling with chronic pain and don’t see an end in sight. I wanted to let you know that you are not alone and that your pain makes you stronger mentally and emotionally. We have the unique ability to empathize with everyone around us fully. It’s not easy, especially because the darkness of depression makes it difficult to stay positive when life by society’s measure seems so gloomy, but we don’t need to live by anyone else’s measure. You know your limits. Don’t feel like you have to conquer every challenge. It can be tough sometimes to get through what others without chronic pain deem to be simple tasks.

Most importantly, don’t suffer in silence. You don’t have to be superhuman; it’s difficult enough to be ourselves. We can create our own measures of success in life. For me, success is just living and not allowing my illness to define me.