In 2012, I was diagnosed with neurosarcoidosis. Let’s just call it neurosarc for short… I was a very scary time for me. I seemed to be pretty healthy. My son had just turned 2. I was up to my eyes in Autism books and interventions including about 30 hours a week of at home intervention services for Speedy.
I ended up in the hospital twice for total vision loss within a 6 week timeframe. First in the right eye and then again in the left eye… At first they thought it was a fluke and sent me home after a week of prednisone IV infusion and a second week of tests that all came back negative. The second time I was hospitalized, they ran another gamut of tests and finally realized my Angiotensin Converting Enzyme (ACE) level was abnormally high after about a week… Finally, they were able to diagnose me…
So what is sarcoidosis?
One of my sister-sarkies, Andrea Burdette Acton best describes it as follows:
“Sarcoidosis is a potentially fatal inflammatory disease that can attack any organ of the body. It causes tiny lumps called granulomas to form. These granulomas most closely resemble sugar or sand in appearance. Sarcoidosis has no known cause or cure and is known to affect people of all ages, races and gender worldwide. A normal immune system would defend ones body against anything seen as foreign or harmful. Specific cells would be sent out protect the organ by releasing chemicals that would produce inflammation. By surrounding the evading substance or substances the foreign invader would then be isolated and destroyed. In a person with Sarcoidosis for whatever the reason the inflammation remains and this allows granulomas to form. Sarcoidosis is not easily treated or controlled because no two persons with the disease are alike, therefore we could be compared to a snowflake. In fact most people with the disease look perfectly healthy from the outside.”
Now all of this is going on in my brain, hence the “neuro” aspect of it. So yeah, no only do I have to worry about my emotions overreacting, now I have to worry about my immune system overreacting! So far, both of my optic nerves have been the biggest casualties of this war…
What makes diagnosing sarcoidosis so difficult? Did you read Andrea’s explanation??? No one knows what causes sarcoid. It affects all ages. It affects all races. It affects both genders. There is no definite way to diagnose it because every case is different. And, of course, no single test works on everyone. Not everyone has granulomas at the onset. Not all cases are chronic. Not all cases are life threatening.
But You Look Good, You Can’t be Sick
If you visit my Healthy Living page, you’ll see how much work I’ve done in order to heal… I have been on immunosuppressives since 2012 to inhibit my inflammatory responses… Let me tell you, immunosuppressives wreak havoc on your body! …From immediate weight gain (18 pounds in 3 days literally) to extreme bloating to light sensitivity to nausea to hair loss to joint and muscle pain to extreme fatigue to migraines… the list goes on and on… The worst part…? They can’t even tell me which symptom is from which… the medicine or the disease! But since I have lost weight and maintain a healthy lifestyle, I no longer qualify as being sick to my peers.
The best explanation of how I feel was very accurately summed up by Christine Miserandino. Christine suffers from Lupus and shared her story with her best friend one day sitting in a diner. It pretty much describes how I physically feel every day since living with a chronic disease.
Christine asked her friend to gather as many spoons as she could… They counted them and were starting with 12 spoons. Christine started describing her day. Most people rush through their morning rituals. But not us… We can’t just jump up out of bed. First you open your eyes, then take it step by step. Of course you didn’t get a good night’s sleep and getting out of bed is a chore. You have to take your med but first you have to make breakfast or else you will get sick… And if you get sick, it’s a wrap for the day… Maybe even for the next day. Before she had even left the house, she was down half her spoons… So she went on throught the day and by 7pm, she was left with only one spoon. Choose wisely because that will be it for the day, until tomorrow…
…When you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with.Christine Miserandino
Today was a spoon counting day for me. Maybe it’s because I’ve been cramming for school. Maybe it’s all the Divorce Court stress from yesterday… Maybe it’s worrying about how Speedy will handle all of these changes… All I know is that my daily headache was bad times 10 this morning, welcoming me not-so-nicely out of sleepy land… While sometimes I am grateful for the pain every morning because it proves that I am still alive and able to live another day… Today, it was just plain misery. Even looking down to find my slippers was a challenge… By the time I got myself ready, got Speedy ready, fed him, made his lunch and drove him to school, I was all out of spoons.
There are so many things people take for granted on a daily basis. I never really stopped to consider this before. I guess many people don’t realize this until they are faced with their own daily challenges. Small things are suddenly appreciated when they have such a big impact on your life, like finding your slippers.
Would I wish my diagnosis away? Many times I say, “Yes, in a heartbeat.” But the reality is, my entire life has changed from this. I embarked on a journey of health and wellness that will not only help me, but also help my son to heal. I discovered the power of essential oils and am impacting lives by sharing their benefits… I know that by spreading my message and sharing everything I have learned, I will empower others to take their health and well-being back into their hands… And that is what makes this journey necessary.
If you would like to read Christine’s entire Spoon Theory, please visit her website.
Check out Andrea Burdette Acton’s United SARCOIDOSIS Awareness Tour to help her visit each state, spread Sarcoidosis awareness and teach others about our disease…
For further information about Sacroidosis, please visit the Foundation for Sarcoidosis Research.
Please, don’t forget to be grateful for the spoons you still have in your hand…
And if you found this helpful, please feel free to share…