So, you start your list for your next encounter with your doctor, trying to be your own advocate for your health.
You write your symptoms, which makes you look like a hypochondriac.
You write how difficult it is to get moving each day. How the “tin-man syndrome ” lasts for hours. How when you stop moving the joint pain sweeps over you. How getting up from the recliner is like starting the day all over again and elderly people walk better than you. How walking of any kind hurts your spine and makes it feel swollen and on fire. How devastating it feels to walk barefoot.
You write about the neuropathy in your hands, feet and calves and, most recently, your inner thighs.
You write how you still do stretches everyday just to be able to move and (try to) do weights when you can, because just lifting a hairbrush feels like a brick. You write how you try to walk up and down your driveway, one mile each day, and some days that takes 22 minutes and other days it takes over 35, and some days you can only walk there and back, but you still try.
You write about how the dexterity in your hands are shot and writing with a pencil hurts and you are lucky to sign your name on a document or check and still have it be legible.
You write how your toes feel swollen and hurt to move them, but there is no physical evidence of swelling. How your knees do swell, but aren’t warm to the touch, nevertheless, still swollen.
You write about the foot arch wraps, knee braces, wrist braces, elbow, back, and hand braces that you need weekly (sometimes all at once). How your pain fluctuates throughout the day, seemingly moving from one location to another on your body.
You write how the heating pad is needed throughout the day for your spine, just to get to the next hour. How you cannot lift your arms high and cannot pull anything off a shelf and you always have to ask for help. How you cannot bend down to pick anything up off the floor without great effort and… very sl-ow-ly. How you need a chair pad to sit, orthotic shoes just to walk and even then it feels like you are walking on sponges or water balloons. How your fingers have bumps on some of them and your finger nails now have ridges where their wasn’t any before and your toe nails are cracking and lifting off the nail bed, but you hide it well with super glue, polish and care.
How your entire body feels like it is just hanging on by stretched ligaments and and broken vertebrae. You write how you wake up with your eyes gooey some mornings and showering wears you out. How you have sudden IBS issues, how you take Tums regularly and how you also suffer from hemorrhoids and how you use every over-the-counter cream created, daily.
You write the lab tests you plan to ask him to run that they never run, but when you look up your test scores, singly they are positive, yet (they say), too low to really be positive and mean something, and, “Oh yes, your positive ANA has also been negative at times in the past 10 years and just because your titer has been high a few times doesn’t matter… and your positive Anti-dsDNA and positive RA33 doesn’t mean anything either, because the numbers are not high enough to matter.”
Now, you’ve researched on reputable sites by yourself and you’ve learned that collectively, these all add up to Lupus. So, be your own advocate!!
Why do doctors only read the labs, but never HEAR what is spoken about the symptoms????
You know he wants you to try medication, but that’s only to pacify himself, not because he really thinks you have whatever it is for the meds to be prescribed. “Trial and error,” he says.
You’ve researched the meds and the side affects are far worse than what was listed above.
Then he starts mentioning needing a pain management therapist because you just seem so “out-of-sorts…” Yeah. That gets me every time.
Just run the stupid labs, the new labs and the ones you don’t think are necessary and LISTEN to what I am actually saying and not whatever it is you think I am saying.
Be your own advocate for your health!!!
So you reread your list above and sob because you don’t feel like anyone understands the daily struggles you are experiencing all because you got dressed today and are smiling. Yep. I smile because I still need to find the Joy of the Lord and know that Jesus is still with me, pain and all. You question whether this list will ever be given….
I pray your experiences are better than mine. I am fortunate that my PCP has always believed my labs and listens to me and knows something isn’t right. My first Rheumatologist diagnosed me with Lupus, too, and now the current Rheumatologist is saying the above and disregarding all my past labs.
May the Lord give the doctors (we come in contact with), wisdom and compassion and try to help us. May we feel His presence always and rest in his unfailing arms… on good days and bad. Because,
“This is the day which the Lord hath made. We will rejoice and be glad in it.”
God bless your encounter with your doctor and as you write your list, may you be filled with hope and leave the office with that same hope that someone is taking you seriously.
~The Fibro-Lupus Momma of Ten
