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Fast forward 13 years, and it’s hard to believe that my body has been through so much. Looking from the outside, most people would never assume that I have anything “wrong.” From talking to others in the vasculitis community, I know this is often one of their struggles. I suppose it is both a blessing and a curse to have an invisible illness. I have been lucky not ever having problems with family and friends understanding what I have and, more importantly, what I’m going through, but I know that others have had the added heart-wrenching stress in dealing with ignorance. Sentences like “but you don’t look sick,” “you just need to get out and exercise more,” or “stop being a hypochondriac” are genuine complaints that I often see flying around on support forums.
For anyone who doesn’t already know about this mysterious monster, vasculitis is an autoimmune disease. In simple terms, it means inflammation of the blood vessels. For reasons unknown, my body decided to attack itself as it believed there was an infection somewhere when, in fact, there wasn’t.
To put it into perspective, think of when you have a simple cold. Your nose becomes stuffy and feels swollen and blocked. What’s happening is relatively simple. Your body senses an infection and instantly creates more white blood cells to fight it off. With vasculitis the body thinks healthy sinuses and other organs are infected and sends the white blood cells which attack healthy tissue throughout the body.
Unfortunately for those of us with vasculitis, this same effect is happening but on a much grander scale. The inflammation causes our blood vessels to become so narrow that blood flow to major organs becomes constricted, causing irreversible damage and tissue death.
There are many different types of vasculitis, and my diagnosis involved a rare type called Granulomatosis with polyangiitis (GPA). One of the most significant telltale signs of GPA is the build-up of granulomas (nodules) in the lungs. Some of those become cavities as healthy lung tissue dies. As a result, today, my lungs continue to be severely damaged, and this still causes me pain on an almost daily basis. My left lung sustained the most damage with the largest cavity measuring around 6 inches long.
GPA Vasculitis comes with a long list of symptoms. A list that would take a long while to type.
Thinking back when I was in the midst of things, I didn’t just have ONE thing that doctors could pinpoint and diagnose, hence the delay. Indicators kept accumulating into a big pile of horrendously, painful symptoms that came together to make up GPA vasculitis.
I could feel it throughout my body. There wasn’t a single ounce of me that wasn’t affected. I once described it to a medical student as a feeling of having rotten eggs pumped through my veins. I could sense it, taste it, smell it, and there was simply no escaping from it. It was constant, and it felt like it would never go away!
Constant discomfort and pain, no matter on what level, are brutal and exhausting. I’m Christian and have a strong belief in my faith, but after enduring such suffering, I have been able to allow my mind to wander and procrastinate on thoughts that are very much against my belief. Whilst I never considered ending my life, I have been through two separate experiences where I no longer wished to live. I could simply no longer continue. I could not stand another hour, another day, another night with that level of pain.
At those particular moments in time, my brain simply wanted to divorce itself from my body. Thinking back on it now, I see those feelings as a pure survival instinct. Fight or flight if you will. Whilst my mind wanted to fly, my body chose to hold on and fight. I was on my way out, and if my diagnosis hadn’t finally been made that night, within just a couple of weeks, I would have died.
Whilst I felt I was ready to go, knowing the pain my parents would have endured is too much for me to bear. Even today, as I type this tears stream down my face and my heart aches to know the pain I have put them through. They suffered enough seeing me that way, and God only knows what it would have been like for them to have had to lay me to rest.
The primary and most effective treatment for Wegener’s is chemotherapy. Once I was finally admitted after passing out in the x-ray room, I went to the renal ward, then transferred to the Intensive Care Unit, where over the next five weeks, a drug called Cyclophosphamide (Cytoxan) ran through my body. Alongside extremely high doses of corticosteroids (methylprednisolone), a drug that suppresses the immune system and decreases inflammation. Additionally, they connected me to a Plasmapheresis machine, which acts very much like dialysis, for plasma exchange (cleaning) The doctors inserted a tube about as thick as my little finger into my femoral artery. This tube was around 5 inches deep and required several stitches to keep it in place. Thankfully I was too unaware of what was happening to take much notice.
Chemo was tough. For me, it was the final kick whilst I was already down. At this point, I had given up. I shut down completely. The only bursts of movements I had were from erratic panic attacks that had me trying to rip out IV lines and oxygen masks. I was too confused to comprehend what was happening truly.
For anyone who has never had cytotoxic drugs at that high level, first and foremost, I wish you never have to. Its a nasty, nasty drug. It truly leaves you questioning how on earth is this even possible? How can something that feels as though it is poisonous and should be killing you be ok? How can this be making me better?
The medication burns as it travels through your already fragile veins. It makes you want to throw your entire stomach up, and I don’t just mean its contents, but the actual organ itself. Its primary job is to kill off white blood cells, which leaves you with almost zero immunity. Being in the hospital, or just about anywhere, leaves you extremely vulnerable to illnesses. A simple cold can and often quickly manifests into full-blown, life-threatening pneumonia.
To ensure my white cells didn’t drop to a lethal level, I had daily blood draws.
Just as death knocked on the door, a false sense of safety pulled me back into a blissful space where my body would be given a break for a few days, then back to the fun, it would go again.
Knowing what I know now, it seems as though this is what can often kill us. Not the illness itself but the awful side effects that come along with the treatment. Ironic, isn’t it?
Thanks to my Latin skin complexion, I’ve never bruised easily, but after so many infusions and blood tests, my arms were entirely black and blue. It looked like someone had violently and repeatedly grabbed my arms like a domestic violence victim. Add black and bruised eyes, extremely puffy face, broken demeanor, and I was the poster girl for abuse.
I was lucky to be diagnosed when I was. Despite it taking weeks, thanks to a random doctor who I never formally met, my nightmare finally had a name. Many others have not been as fortunate. I have sadly lost count of how many posts I have seen on support groups where loved ones informed us of lost battles. People younger than me, women my exact age, kids, grandparents, cousins, daughters, sons died too soon due to a lack of knowledge and misdiagnosis. The aim of most of us is to now spread awareness of this illness in the hopes that it will, in the future, save lives.
I had a few pictures of me during that time, but a few years later, I chose to delete them all in the hopes of moving on with things. Why dwell on the past. When I began to feel better, for a long time, I thought I could go back to my old life. It took me two years to realize that this would never happen. I realised I had to mourn my existence before vasculitis, and with that, it suddenly felt inappropriate to keep any recollections of this thing that had tried to kill me. I didn’t like seeing those pictures and didn’t feel a need to hold onto them. Sitting down right now and recollecting those thoughts hurt enough. I don’t think I could sit and look at the pain directly. Like I previously mentioned, I have forgotten the level of suffering I endured; I will always remember the way it made me feel.
I was in the hospital for five weeks whilst they tried everything they could to control the damage to my body. Cabin fever closed in on me, and for the first time in my life, I suffered from anxiety and panic attacks. It was a weird situation to be in as I didn’t feel like myself. I despised who I was. I was used to running every day, training, and taking care of my body. Now I didn’t have the energy to sit up. I needed help to get dressed, and I hadn’t showered in weeks! All in the space of 2 months, my entire life had been stripped away from me. It was a lot to take in, but soon enough, I began to count my blessings and instead focused on being grateful to be still alive.
I’ve realized it would be impossible for me to sit and tell you all about what happened during those weeks. From learning how to breathe again to regain enough strength to be able to walk to the bathroom, those weeks will forever stay with me. They have taught me so much that weirdly, I have become grateful for what happened.
I’m now able to live a relatively healthy life. I’m thankful, grateful, and glad for my life, and I wouldn’t swap it for the world. I hope to never, ever go through that level of discomfort and pain again, but I’m glad I lived through it as it made me the person I am today. I wake up, get out of bed, and thank my lucky stars for being able to do so. I walk, run, swim, and my heart exudes gratitude. My body healed enough for me to have a second chance, and I’m eternally grateful because recovery from GPA vasculitis is not typical. Not everyone responds as well to the treatments I did.
Living with a chronic illness means always carrying around a dynamite stick. I have had relapses over the years that once again left me fighting for my life, but we dealt with those the best we could and persevered through the flares with optimism and determination. My experiences no longer bother me. It is what it is, but the one part I do wish I could make disappear is the pain it has also caused to others. My parents, brother, even people I dated over the years lived through this nightmare with me, and that makes me sad. They spent hours in the emergency room and months in hospital wards. These are years we can never get back. This illness caused so many tears and anguish that no parent, sibling, or partner should ever endure. My one wish would be to remove that burden from them.
I feel for anyone who has to go through this alone. If you are someone who is, I beg you to reach out to me or anyone else in the community. I never really got to talk to anyone about the trauma I went through, and to a certain extent, I wish I had done. It’s only now that I’m genuinely getting to process this journey through this blog post. Being sick is a lonely affair, but I’ve learned that it doesn’t have to be. You have to share; you have to vent, you have to process what is happening; otherwise, it will eventually become too much. Whether you choose to speak about it publicly or simply share your thoughts silently through a prayer, pour your heart out and let it just be.
From now on, I hope to share with you the positive I have taken away from this illness. Some of you reading this may be newly diagnosed and will struggle to make any sense of that last sentence, but the act of sharing is what I wish to accomplish. I want to show there can be life after vasculitis, or any chronic disease. It may not be perfect, but hey, at least we’re still here to live it!
You’ve survived 100% of your worst days, so that has to count for something, right?