‘Excuse Me, What Did You Say?’
The clock ticked loudly as the phones rang in unison with a ticking timepiece that was getting on my nerves. I wondered how long my appointment would take.
Sitting in the doctor’s office had become second nature to me. Yet, I was ready to be done with it before it had even begun. Like the stale air circulating in the office, my patience was growing thin.
I acknowledged that I had become a professional patient. Not knowing what was happening to my body had kept my anxiety in high gear, and I wondered if “crazy” would have been a solid clinical diagnosis at the time.
As I checked my watch, a friendly voice rang out, “Amy Baker.” It was like being called down on “The Price Is Right.” It was my turn, so I jumped up and followed the nurse. She ushered me into a sterile room where I waited. I didn’t have to wait too long.
My rheumatologist was a friendly and studious woman, her bedside manner concise. We exchanged the usual pleasantries, and she asked how I had been feeling. I wondered if she had all day for me to tell her exactly how I had been feeling. When most people would ask how I was, they would get the usual, “I’m fine.” My thought was that she did not have time for all of the ways I was feeling unwell.
It was not my first appointment with her. After multiple vials of blood and endless X-rays and negative tests, I finally heard the words I had been waiting for: “We have a diagnosis.”
“Amy, you have scleroderma.”
“Excuse me, what did you just say?”
She launched into a medical explanation of what a scleroderma diagnosis meant. “What you talkin’ ’bout, Willis?” It was like she was speaking to me in hieroglyphics. What was it, and why did I have to have it? Oh, it’s an autoimmune disease.
I was a tad confused by the words coming out of my rheumatologist’s mouth. I saw her mouth moving, and I knew she was talking. However, her words seemed to go in one ear and out the other. I didn’t even hear a word she was saying.
She was discussing a medication regimen when I finally realized she was still talking to me. It was like the audio eventually turned on. I wonder what she said before I finally tuned in.
Wait, how many medications would I need to take? I don’t think this will work for me, this autoimmune disease with many other diseases and problems.
That first diagnosis turned out to be just the beginning of a long line of diagnoses. I gathered my belongings and left. I was happy to have a name for my problems, but unsure about how to handle the news. So, I did what we all do, I got to my vehicle and Googled the name.
WHAT THE HELL DID I JUST READ??
I hadn’t even put my car in reverse to back out of the parking space. I drove home in a fog. I’m not sure how I made it back, but my car was in the driveway and I was at my computer when I came out of my newly diagnosed fog. How do I tell the people I care for that I have been diagnosed with a life-threatening, life-altering illness?
I went to sleep that night with a heavy heart. The following morning, I convinced myself the diagnosis was wrong. However, after hours of researching my medical records, lab results, and anything else I could find, I sat back in my chair and realized that my life had changed forever.
But what scleroderma wasn’t ready for, and what I already knew, is that I am a warrior! And scleroderma had picked on the wrong girl.
***
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.
DEBBIE Forth
Oh! Don’t I know the feeling. Heart, lungs, digestive tract, uterus and I am LIVING MY BEST LIFE! I feel great by creating my life with energy work, breath work, allowing food to be my only medicine, and loving life. They gave me 2 years ... just past that mark and soaring - looking better and feeling better than ever.
#1 mindset
#2 get a healthy structure in place
#3 healthy immune system (mind, body soul)
#4 healthy environment
#5 only do what makes you happy - what you love
Life will mirror to you what you vibrate !
Create to Live! Love to all.
Celia G.
This post hit home but in my case the diagnosis was for my sister (really, my sister-in-law but I consider that a technicality). Spiritually, we are sisters and both put in "stun" mode with this diagnosis. Already the progression has caused dire often critical situations. We pray. We read. We research this horrible autoimmune disease. She endures the physical and mental anguish and I the latter. She, too is a warrior and I her sword bearer for as long as I am able. It's a battle. Prayers to all.
margi
I bareply heard or understood my diagnosis over the phone ,not in person (corona fear )
sorry I have to tell you you have Lupus and Sc lèer,e...... what?
my heart wentt heavy noooooo not me
now my l8vesems over, mostly in bed because avoiding sunlight and severe Raynauds
margi
I barely heard or understood my diagnosis over the phone ,not in person (corona fear )
sorry I have to tell you you have Lupus and Sc lèer,e...... what?
my heart went heavy noooooo not me
now my live seems over, mostly in bed because avoiding sunlight and severe Raynauds
Bonnie Ringdahl
Totally relate to how you feel and felt at the news and sitting in your doctors office. My experience was almost identical! It will take awhile for you to fully realize everything. It will be even longer to allow yourself to take care of yourself and rest when you need to and play hard when you can. Live life large. Family and good friends will understand when you can and can’t. They will all help you heal and be there for you. May God bless you in the journey.
Phil m
Hi my first incling to scleroderma was at a dermatology appointment. After researching (as we do) the next few nights of endless interrupted sleep and anxiety were extreme. Multitude of tests and a long period of uncertain diagnosis due to my unusual presentation. Learning about the disease is critical in my eyes to having the balance of understanding the terminology and dealing with our life and family changing times ahead.
We have to continue to 'walk our lives' as best we can
Kind regards to all
Phil(australia)
Amy Baker
Phil, I absolutely understand and I am so sorry that you have had such a long period. I, 100% agree with you that learning about this disease is the most important and critical piece. We must advocate for ourselves!
Kate Smith
Manometry results showed complete hypomotility of my Oesophagus, no peristalsis in Oesophagus and Bowel, called the dumping syndrome. Aortic valve, sclerotic, Professor Denton stated "Dont worry about it" No discussion or explanation given. Lung infections, too many to cope with. Lung function test, result, fibrosed lungs, no discussion. Autoimmune, Syndromes,. diagnosis, forget about it. Blood tests normal, see you in 6 months. Labelled "Lupus" 18 years later "lupus screening" Negative. Spine/Cerebellum numerous lesions, peripheral neuropathy, given up, no treatment or therapy being offered. Full time carer to my endless problems. Bladder infections, profalactic Antibiotics prescribed. Been offered knee replacement after 20 years of excruciating pain. Bed bound watching telly. I'm exhausted, wish I could resign.
GretchenShepard
I can relate to all of you, this decease sucks, something I've discovered and want to share with everyone because I know more than any of the Dr s I've seen I've experienced the terrible pain, sleepless nights and wondering what's next. They have no clue, I have systemic scleroderma limited used to refer to it as CREST. Now that I found the cause of my pain and my blood work will be done in 6-22. I can start the next step !! My Dr. Only has given me nitro- bid for Raynauds and a blood pressure med for blood vessel restriction, even though my blood pressure is fine. And I've probably taken 1000 ibuprofen in the past 3 months, Looking back I believe I've had this for at least 10yrs. My biggest complain has been...
Horrible pain in my right knee both should rotary cuff unbearable pain both elbows and hands, my Raynauds has turned in to puss filled liaisons requiring my nails to be taken off. One by one. What I discovered last week was ( sorry if it grosses people out)!! Lesions in my nose that looks like barnacles on a whale. Filled with fluid.. Researching it I found out its calcium crystals that form on small arteries!! That are also found on elbows knees and especially shoulders!!! Hello thanks for the heads up !! Every Dr. I've seen has x- rayed all areas elbow, shoulder etc. Looking at the test results they all say some sort of calcification but if anyone would put two and two together maybe I wouldn't have had to suffer for so long . Im not a DR. But anyone can look things up these days!! Google it!! I diagnosed my self two yrs ago only got Dr. Diagnosis last Jan. I know I'm right about this.. Calcinosis cutie is the C in crest. So if anyone is going through stiffness and excruciating pain in the joints you could possibly have this as well!! Take care everyone!! We got this!!👍😃
Amy Baker
We absolutely got this! And thank you so much for sharing your story with me. I too was my own advocate and you have to be! It is crazy to see how much we have to deal with to get a proper diagnosis. I am sending love and light to you!