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Fast forward 13 years and its 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 that this is often something they also, weirdly, struggle with. I suppose it is both a blessing and a curse to have an invisible illness. I have been lucky in not ever having problems with family and friends understanding what I have and more importantly, what Im going through, but I know that others have had the added heart-renching 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 which I often see flying around on support forums.
For anyone who doesn't already know what this mysterious monster is, Vasculitis is an autoimmune illness. 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. Whats happening is relatively simple. Your body picks up that there is an infection and instantly creates more white blood cells to fight it off. That inflammation in your nose is exactly that reaction happening.
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 narrowed that blood flow to major organs becomes constricted, causing irreversible damage and tissue death. There are many different types of Vasculitis and I was diagnosed with a rare type called Wegener's Granulomatosis (GPA). One of the biggest telltale signs of Wegener's 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 badly 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.
Wegener's come with a long list of symptoms. A list that would take a long while to type.
Thinking back to being in the heat of things, I didn't just have ONE thing that doctors could pin point and diagnose, hence its delay. Things just accumulated into a big pile of of horrendous, painful symptoms that came together together to make up what it is.
I could feel it all over 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 being pumped around your veins. I could sense it, taste it, smell it and there was simply no escape from it. It was constant and it felt like it would never go away!
Relentless discomfort and pain, no matter on what level, is brutal and exhausting. Im Christian and have a very strong belief in my faith but after enduring such suffering I have been able to allow my mind to wonder and procrastinate on thoughts that are very much against my belief. Whilst I never ever 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 simple survival instinct. Fight or flight if you will. Whilst my mind wanted to fly, my body, despite being broken and torn up, 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 been gone.
Whilst I felt I was ready to go, knowing the the pain my parents would have endured is too much for me to bare. Even today, as I type this tears stream down my face and my heart literally aches to know the pain I have put them through.
They suffered enough seeing me that way, God only knows what it would have been like for them to have had to lay me to rest.
The main and most effective treatment for Wegener's is chemotherapy. Once I was finally admitted after passing out in the x-ray room, I was taken up to the renal ward, then transferred to the Intensive Care Unit where over the next 5 weeks my body was aggressively pumped full of a drug called Cyclophosphamide (Cytoxan). Alongside extremely high doses of corticosteroids (methylprednisolone), a drug that is used to suppress the immune system and decrease inflammation, I was also hooked up to a Plasmapheresis machine which acts very much like dialysis. In order for my plasma to be exchanged (cleaned), a tube about as thick as my little finger was inserted into a femoral artery. This tube sat around 5 inches deep and several stitches were used 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 truly comprehend what was happening.
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 literally be killing you be ok? How can this be making you better?
The medication burns as it travels through your already fragile veins. It makes you want to throw your entire stomach up, and I dont 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 hospital, or in fact just about anywhere leaves you extremely vulnerable to illnesses. A simple cold can, and often did quickly manifest into full blown, life threatening pneumonia.
Constant, daily blood tests were taken to ensure that the your white blood cells didn't drop to a level that was lethal. Just as death knocked on the door, you were pulled back in to a false sense of safety where your 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 kills us. Not the illness itself but the awful side effects that come along with the treatment. Ironic isn't it?
Thanks to my tanned skin complexion Ive never bruised easily but after so many infusions and blood tests my arms were left completely black and blue. I looked like a victim of domestic violence who had been violently grabbed over and over again. Add in the black and bruised eyes, extremely puffy face and 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...all taken too soon all because of 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.
A few pictures were taken 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 2 years to realize that this would never happen. I came to the realization that I had to mourn the life I had 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 dont think I could sit and literally look at the pain directly. Like I previously mentioned, I whilst I have forgotten the level of suffering I physically endured, I will never forget the way it made me feel.
I was in hospital for 5 weeks whilst they tried everything they could to control the sad situation my body was in. Cabin fever closed in on me and for the first time in my life I suffered with anxiety and panic attacks. It was a weird situation to be in as I didn't feel like myself. In fact, I despised who I was. I was used to running everyday, 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 a 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 focus on being grateful to still be alive.
Ive realized that it would be impossible for me to sit and really tell you all about what happened during those weeks. From learning how to breathe again to regaining enough strength to be able to walk myself to the bathroom, those weeks will forever stay with me. They have taught me so much that in a weird way I have become grateful for what happened.
Im now able to live a relatively normal life. Im thankful, grateful and glad for the life I have and I actually wouldn't swap it for the world. I hope to never, ever go through that level of discomfort and pain again but Im glad I lived through it as its 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 is filled with pride. My body has healed enough for me to have a second chance and Im eternally grateful for that as I know my case is extremely rare. Not all have responded as well to the treatment as I have.
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 with optimism and determination. The cards I have been dealt 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, my bother, even people I have dated over the years have also had to live through this nightmare with me and that makes me sad. Hours in the emergency room. Months spent in hospital wards. Years that we can never get back. So many tears and anguish have been shed over this illness that no parent, sibling or partner should ever endure. My one wish would be to take that burden away 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. Its only now that Im truly getting to process this journey through this blog. Being sick is a lonely affair, but Ive learned that it doest have to be. You have to share, you have to vent, you have to process what is happening as 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 that is exactly why I wish to do with this blog. Show that there can be life after vasculitis. It may not be perfect, but hey, at least you're still here to live it!
You've survived 100% of your worst days, so thats gotta count for something right?
A x