It's easy to judge a book by its cover.
We all do it.
It's not right and it's not fair but it happens. The worst thing about being quick to judge others based on their appearance and our limited knowledge of their lives is that we miss out on really knowing those people, and how fantastic they are.
I loved Courtney Conlin from the moment I met her. She's warm, funny, sincere, smart, down to earth, kind...
But ya know what?
I was intimidated at hell when I was first introduced to her because...well... just look at her!
She's the type of woman that prompts Sonya and me to say, "If I didn't get to know her and love her, I'd hate her..."
It's a joke, but as women we behave this way all to often.
One of our goals with One Brain Wellness is to change this way of thinking and acting. Don't judge the women you meet based on appearance or what you *think* you know about them.
Chances are you're missing out on adding a really amazing person to your tribe.
We want to share your stories. Drop us a line at firstname.lastname@example.org if you're interested in doing a Q & A like this....
Most people would be shocked to learn about the health issues you've been dealing with for years. You have lupus. What is it?
Lupus is a chronic autoimmune disease which causes autoimmunity, the process of your body and its immune system not understanding the difference between non-threatening bacteria and tissues vs. good. When the immune system does not know what “invaders” should be targeted, it develops autoantibodies that attack and destroy healthy tissue, organs, etc. This process can cause a person with Lupus to experience fatigue, inflammation, pain and damage in various parts of the body, including organs.
When were you diagnosed? Describe how you felt in that moment.
I was “officially” diagnosed in 2012.
Finally having an answer gave me such a sense of relief but at the same time opened a door to a flood of emotions and many questions: Why me? How me? Who else has it in the family? Will I die young? Will I ever be a mother? What now?
The next emotion I experienced - denial.
What led up to your diagnosis? Was it a long road to find out what was going on? How did you feel during that time?
As a child I was sick a lot and battled Scarlett Fever at one point. I remember telling my parents and doctors, “I don’t know, I just don’t feel normal”. I always struggled trying to explain how I felt or why I did not feel as energetic as other kids. I knew something was wrong, I just could not pinpoint it and neither could my parents or doctors which meant we all shared the same frustrations and concerns.
In 2012 my health had hit rock bottom and I was hospitalized (a total of three weeks). I weighed in at 105 lbs. (mind you, I am 5’7). I was frail, weak, fever ridden and scared.
I had just had an MRI due to nausea I was experiencing and received a call that same day from my physician telling me it looked like I may be experiencing mini-seizures. I was standing in my house when I got the call (thank goodness) and about fell over. All I could say was, “What?!” and “Can you please repeat that?” Not long after that, we received another call to go directly to the hospital to be admitted. Do not pass go, do not collect $200 – do not even pack a bag.
The next thing I knew, my husband was driving me to the hospital and calling family members.
It took a spinal tap, over 50 plus blood draws, multiple sans and tests to begin understanding what was really going on with my body.
As time went on, and a better understanding of autoimmune diseases began, the answers became clearer. Between that and having amazing medical teams at Johns Hopkins, Mayo Clinic and my home based doctors, the answers flooded in. The first piece to the puzzle was not only the symptoms I had all of my life but my lab work showing a positive ANA (Antinuclear antibody). Antibodies are produced by our immune systems and this was just one of the antibodies that proved my immune system was working in overdrive.
The “mini-seizures” were actually demyelinating disease occurring within my tissues which I have found out in this past year is actually remitting / relapsing MS (multiple sclerosis). Yep, you read me right! Supposedly there are specific autoimmune diseases that prefer to “run together” as they say at Mayo Clinic. And, these two, Lupus and MS, have chosen my body as their playground. So, what I have done (and my doctors)? We are making the playground as inhospitable as possible. I take Plauquenil (a top Lupus drug) and give myself three injections per week of Copaxone for the MS. Oh, and try to do my best with keeping my stress level down (in a perfect world, right)?! Lol.
How did your life change? Do you think of your life as "before lupus" and "after lupus"?
I suppose you can say that my life changed for the better and the worse; for the better because I finally had the answers to a lifelong mystery that caused me a lot of misery. And for the worse because, as of right now at least, there is not exactly a cure for Lupus, it is too dangerous for me to carry a child (for both myself and the baby) and I am just one of those people who would rather take care of others and not have others worried about me (if that makes any sense at all)?
What does it feel like to live with this diagnosis? How has it changed your perspective on life?
I am finally at a place where I have accepted the reality of having Lupus (and MS). I was depressed – for a long time and hated admitting it. It made me feel weak and vulnerable.
The moment I stopped surrendering to the disease(s), I became stronger and more hopeful.
What do you want people dealing with similar situations to know?
Let me be the first to tell you that there is a beauty within vulnerability and accepting the things we cannot change. We can sit and cry over the spilled milk or we can stand up, grab a rag, clean it up (the best we can) and move forward, not letting it affect us. It is our choice how we handle every instance in our lives; we can surrender or we can say, “Nope, not today, not ever will you rule my life and control my happiness.”
This is what I have done. I have experienced too much loss in life to allow these disease(s) to rob me of happiness and enjoying as many moments as possible. Not every day is rainbows and butterflies but if I can at least make them a little sunnier, then all is OK.
Also, knowledge is power! Please never forget this.
I have read more material, asked more questions to doctors (they love me, let me tell ya), read over all of my medical documents (IT IS YOUR RIGHT) and have been my own advocate so that I have a better understanding of what is going on inside of my body and how to help myself outside of medicine.
Only you know your body and what you are feeling and the more you can understand the jargon and hold thorough conversations with doctors, the more confident in your disease you will feel. I promise you.
There are also a lot of helpful books – a favorite of mine is “The Wahls Protocol” – and information we can use to help ourselves. For me, the less inflammation occurring in my body, the better off I am and feel. I have learned that so much of what we eat and drink can play a big role in how we feel. Exercise helps keep my stress level down which is another very helpful practice. Stay tuned for a blog post on these topics!
And please know, I am always here to help in any way that I can.