After writing Part One of my diagnosis journey I just felt I needed to stress exactly WHY I’m sharing so much of this part of my life. I believe that strength comes from within (God given) as well as from those who are just like you; people you can relate to.
First and foremost, let me start by saying this, “Thank You”, to those who have shared their compassion and concern. Please understand that I am currently feeling well. I have my days, just like you, where motivation escapes me. Great days, when I feel I can tackle the world. Other days, where I may struggle with bouts of fatigue or joint and muscle pain. BUT, I remain functional and my symptoms are manageable with a strong dose of ibuprofen, eye drops and a lengthy nap.
I have not received a diagnosis yet and I may not. In fact, the average length of time for an official Sjögren diagnosis can be anywhere from 3 to 5 years! For Lupus, it can take even longer if a person is not yet displaying the required list of symptoms for official diagnosis. Auto-immune diseases and sorting through a wide range of symptoms, blood work and biopsies is tricky business. And don’t get me started about the possibility of Fibromyalgia.
Second, I’m not sharing for pity’s sake but rather to document a real-life experience. I want to be a living example someone else can relate to. I knew I couldn’t be the only one out there struggling to find answers – just one of the few willing to write their entire story.
After researching the results of my blood tests showing correlation to possible SLE (Lupus) & Sjögrens, most of the information I found was purely clinical. Sure, there were small snippets on WebMD, random comments on a diagnosis or recent symptoms but not a true ‘Point A-to-Point Z’ personal account.
At nearly 45 I shouldn’t have spent the last 2-5 years (or more) with pain that can’t be explained. I shouldn’t have suffered because I was afraid to take a laundry list of symptoms to the doctor in fear they would think I’d lost my marbles or was seeking attention. I should have let my doctor decide if what I was feeling was abnormal or just the natural aging process. I shouldn’t have just assumed…you know what they say about that. Right? If you ass-u-me…
So, on that note, if you are also experiencing discomfort, brain fog, fatigue, mouth ulcers, dryness of the eyes, mouth and skin, joint inflammation or body wide pain – you are not alone. It may not be all the time. It may not be every day. It may not be all these symptoms. You may have 4-6 weeks of mysteriously miserable symptoms that fade away until the next flare hits. At times you think you are going crazy and by the time you can get in to see the doctor, things dissipate. Only to find that two days later, you wake up to your body “humming” with a low level of pain you can’t explain.
Just know, I am where you are. You are not “losing your marbles” and perhaps your pain has nothing to do with the average course of aging. Be an advocate for your health and well-being. Don’t be afraid to push for testing and be sure to present ALL the facts – every symptom can be a great tool in determining what ails you.
COMING SOON – Stay tuned to http://www.dirtonmyplate.com for PART TWO of my diagnosis journey.