I had been waiting for this day for weeks – finally, I was going to get the brain imaging necessary to get answers. Honestly, I thought it would be one more test that would indicate that all was fine, and provide no further clues as to what was happening inside, but maybe it would provide critical information.
All those who suffer from autoimmune diseases (or many other “non-visible” conditions) know the too familiar “but you look fine” or, “you look so healthy, no one would ever know anything was wrong,” when you feel like you are dying inside – pain, fatigue, inflammation, havoc. Lupus is one of those diseases (unless it is attacking the skin, where damage can be seen). All damage is internal, invisible to others, with no warnings, and completely unpredictable. One day you feel perfectly fine, and the next, you can barely move or have sharp pains going through your body like thunder and lightning. This can last days, weeks, or even months, until it decides to settle. And the root cause: your body thinking it is defending itself against an invader, so it goes into a full war – against itself – causing major internal damage.
For me, it started when I was about 6 or 7 years old; very sharp pains in my chest. My father, a physician, took me to all kinds of specialists, and all they could say was “her heart is doing fine; maybe growing pains, or “costochondritis” a term that would become very familiar a few years later. I would sometimes feel more tired than usual, but we attributed it to all the hours I trained as a gymnast. Back pain – same thing. It was not until I was 19, when one day I woke up with a bright red eye: it was so painful with light that I had to cover it on my way to the doctor. Blood tests, almost daily visits to the doctor, and several procedures pointed to Iritis (inflammation of the iris) caused by an autoimmune disease: most likely lupus, but inconclusive results; all we knew was that it was autoimmune. After many years of attacking my iris, my body decided to go after the membrane surrounding my heart and ribcage, or the lining surrounding my lungs, my kidneys, and my worst fear, 10 years ago, my brain and CNS – I was immediately put on immunosuppressants. I had refused to take them before because of the warning “you might not be able to fight serious infections.” There had to be something else that worked, and prescription strength NSAIDS worked in the past (besides causing ulcers and other internal bleeding), but now, it was immunosuppressants or else… when it comes to my brain, that takes priority!!! It turned out to be that the medication I had refused to take before basically saved my life, and suddenly, my “flare-ups” became less frequent and less severe. Finally!! It seemed like this crazy disease was under control… until now…
10 weeks ago I began to have neuropathy and very strange symptoms; a couple falls losing control of my body for a few seconds, and my brain feeling like it was on overload, chaotic and overwhelmed – difficult to concentrate and multitask, and it felt like it was being squeezed, sometimes going blank for a second… yes, all very frightening, especially since I did not have my medical dream team to consult, my much needed specialists, as I had changed insurance companies with the new job which required me to select all new physicians, taking months just to get into their office for the initial consultation. I felt lost and alone, and, yes, afraid.
I have worked in the healthcare system my whole life, and come from a medical family, and with lupus – a lot of time spent on hospitals. I cannot overstate enough the importance of taking control of our own medical care, and not trusting that others will do it for us. Medical staff might have the best intentions, but they are also overworked, and let us face it, just like with any other job, there are fabulous employees, and, others not so fabulous. It is up to us to do our research, ask questions, and stay on top of every single step of our health journey. And even more importantly – if you are helping someone who cannot care for themselves, it is CRUCIAL that they always have a health care advocate with them. It is sad to say that their care, not always but unfortunately often, will not be the same if someone is not there with them to ask questions, to make sure they are taken care of with the dignity and respect that they deserve.
Back to feeling lost, alone, and afraid… we will all have those feelings and be in that situation at one point or another; if it is not because of us, it might be due to someone we love going through a similar situation. When faced with this, we have 2 options: we can freeze, shrink, and give up, or, we can take a day or 2 to let the emotions out, but then, like my father always told me, get back up and develop a plan of action, ready to battle with all you have got!
I began to make daily calls to try to get in sooner to see the best specialists I had selected, and I focused on what I could control: taking the best possible care of my body with proper nutrition, sleep and minimizing stress (as much as could be done), surrounding myself with positive people/experiences/humor/calmness – all that would help reduce stress (and it is a fact that the only thing that makes autoimmune diseases worse without a doubt is chronic stress).
Today, I had the much-awaited brain MRA (magnetic resonance imaging of the arteries in my brain), and about 2 hours later, I got a message saying that I had new results on “MyChart”, my medical online chart. I rushed to log on, and I was honestly expecting to read “everything is normal” …when instead, I read “communicating arteries are hypoplastic,” and “right vertebral artery is hypoplastic. “This did not sound like a good thing – my heart dropped, and I quickly began to do what we are often told not to do…google possible situation, and what I found was not what I was hoping to read- all possibilities quite dangerous.
I cannot jump to conclusions, but it is not easy to “not worry.” For some reason, the arteries in my brain are narrower, impeding proper flow, and in that area, every millimeter counts and there can be catastrophic consequences if blood flow is blocked or drastically decreased. At least, this is what the radiology report says. Now, I must be patient and wait 2 more weeks until I can see the endovascular neurosurgeon to hear his interpretation and plan of action.
Nervous, worried, afraid, and yes, even angry at times. I thought having 2 brain aneurysm surgeries was enough for 2 lifetimes…but God has a different plan. Patience was not one of my virtues but I have done well with it – or so I thought – maybe not enough and I need to work on it more.
So… what is the plan?
- I have picked a top-notch endovascular surgeon (Harvard trained and those who know him say he is amazing) – so grateful!!!
- I cannot let fear or worry take over. Those 2 emotions do not diminish the problem, but on the contrary, make it much worse – increased stress, increased inflammation – not a good thing for the brain or any other organ!
- I can research all supplements which help with brain and vascular health –something that we should all do, especially as we age.
- Proper nutrition and exercise – those 2 are what most likely have prevented lupus from causing more havoc. Lower blood pressure, healthy heart, controlled sugar/cholesterol/triglycerides…check!!
- MINDSET – this is the most important in my opinion. If we keep a positive, healthy, optimistic outlook, it creates massive changes in our physical body.
- And most importantly – GRATITUDE. None of us know how long we are here on this earth, so every day is a gift. And when you have a grateful heart, you have a happy heart, and your life somehow seems fabulous.
Just like I tell the clients and athletes I coach – stop negative thoughts as soon as they enter your mind, replace them with positive ones, wake up to gratitude thoughts, focus on possibilities and solutions, and be proud of the person you are; live with a purpose, the purpose of being happy, making others happy and giving back; you will succeed no matter what your goal is.
Today, I am grateful for all the blessings in my life – the rest will come and we will get through each challenge as it arrives. One day at a time.