What an emotionally challenging 2.5 years it’s been. From the stages of ” mystery illness to diagnosis ” to acceptance of diagnosis and then progression of illness, it’s all been like a continuous roller coaster where I tend to bounce from positive to negative thoughts. I’ve said from day one that maybe I was given this disease to be a tool to others , which is why I am extremely verbal about my disease , trying to reach anyone who is hurting and looking for answers or feeling alone or misunderstood.
I’ve been blessed to meet some of the most incredibly strong women ( one man) who are battling some variant of these torrential autoimmune diseases and I’m so grateful for those new found friendships and support outlets. But today after eye opening lab results yesterday and a few moments of ” ugh.. here we go again” I find myself back in the positive boat of so thankful that I’m not still on the climb of ” what’s wrong with me , what is my diagnosis ?” I’m actually one of the ” lucky” ones who had contacts in the medical field and a boyfriend ( now husband ) with the ability and desire to not give up without answers. But I am so heart broken to read posts from my new friends and speak to friends who are still searching. Why is it this way? Why are so many physicians so sheltered by this box 📦 of knowledge and unwilling to open the lid and actually search for answers ? Why is it so hard to believe when a patient says ” I’m in pain every day, I don’t care what your stupid EMG shows… I’m numb , something is going wrong with my body “. Most physicians don’t clearly understand lupus as a whole making it hard to entrust your health to a PCPand even some rheumatologist still think in the box they were taught 20 years ago and don’t stay up to date with the newest research and data. This is a problem people!! Autoimmune diseases are on the rise and people are SUFFERING !
I know what it’s like to be sick every day and feel hopeless because nobody can diagnose you … so I’m asking you friends to please not give up! Keep searching. Be your own advocate! Keep your voice.
I will forever remember the night that I finally had my ah- hah moment and figured out which labs had not been done yet. I had been to another disappointing dr appointment where I left with the same questions I had when I got there. I was frustrated , defeated , feeling crazy and alone. I acted like a crazy woman in a movie and threw my hair in a pony tail, made some coffee, pulled the lap top out , made a check list of all key labs suggested by various web sites for my category of symptoms and then used my kitchen floor as a road map. I laid every single lab result and written report from every doctors office that had shaken their heads and thrown their hands up .. and I went through one by one marking off tests from my checklist. There it was , BINGO! The one lab that my husband ( then, boyfriend ) had asked my first pcp to draw and had been told was normal.. actually had not ever been drawn to begin with. Thus leaving us with a key component missing from our puzzle. And at last, the dr I had left feeling disappointed ordered the test for me and I got my first link to my final diagnosis .
I say all of that to say this … the missing piece to your puzzle is there, somewhere. You are not crazy , you are not pathetic , you are strong. You who is searching for an answer to fight for your health, you are strong ! I hear you, we hear you!
I so badly want my friends to have answers. To have mental relief. Because let’s face it , nobody wants to be sick, but when you ARE sick and don’t have an answer … the words ” you have _______” are the very definition of mental relief. How do you fight what you don’t know ?
So today instead of staying in the seat of fear from wacky lab results , the seat of pity from a nasty flare… I decided to move to the seat of gratefulness and pull up an empty seat for someone who feels like quitting. Warrior on my friends, you’ve got this!
Wishing you plenty of spoons ,
Your friend, the traveling lupus warrior
The following links will take you to the two physicians aside from my husband who I like to call my heroes , the two who took me on without answers, listened and fought with me to find answers. If anyone in Texas is searching , I hope they can help you too.
Rheumatologist specializing in Lupus and autoimmune disorders
Neurologist specializing in MS
Let me take a few minutes to introduce myself to you. I am a 34 year old woman who was diagnosed with Systemic Lupus and Antiphospholipid syndrome after waking up one morning in September of 2014 with total numbness down my right side, extreme fatigue and confusion. Like most patients with invisible illness/autoimmune disease, my quest for a diagnosis was not quick or easy. I went through several different symptom stages, flares, doctors who couldn't figure it out, doctors who wrote me off as being stressed, and even family members who tried to chalk it up to stress. Frustrating is the word that comes to mind, or shall I say, frustrating is just the tip of the iceberg of emotions . I am a nurse, mother of three fabulous children, and the wife of an amazing man who is my rock, my sanity, my comedian, and my cheerleader. Every day is a struggle, a choice , and a gift. I will be completely honest with everyone and say that I have gone through various stages of emotions since that morning, often repeating stages, and I want my fellow lupus warriors to know that its okay to cycle through emotions. I decided to start a blog when I became vocal about my illness to friends, co-workers, and on social media...several people reached out to me and suggested a blog and told me how much it was helping them to hear from me. So the big question was..what on earth could I blog about concerning lupus that there wasn't already an article out there? The smaller question was , do I want to focus my energy on the negative mundane lupus topics such as flares, medications, pain, effects of chronic illness on your family? No, I don't want to focus on all of those things, I want to help, I want to get back in the swing of life enjoying everything and every second regardless of my disease, and I want to help you do the same.
My husband and I love to travel and we do it often. This past December we went to The Bahamas and stayed at The Ocean Club, I went on and on to him about how fabulous the hair dryer was because it was so light that I could actually tolerate holding my arms up long enough and yet it dried my hair quickly and without frizz ( ladies, don't we all agree that hotel toiletries and accommodations are a big deal?!) When we were getting ready on our last night there, my husband said you should keep up with all of the different hair dryers we have when we travel and write about it...hmmmm good idea! So how does my hair dryer finding lead me to lupus friendly travels you ask, because we all want to enjoy our travels and we all want good hair and good skin and the ability to do the activities planned for our trip...but it effects the lupus patient so differently than others. So join me in our travels and in all of the things and places that we find who make for Lupus Friendly Travels! Lets get packing...