Reading posts in some of the Dercums Support Groups I can't help but recall when I first began my dercums journey. I feel so much compassion toward them as they are now fitting into those old familiar painful shoes of mine.
There's a roller coaster of emotions, every aspect of your life is touched and though you don't want to be a martyr you look for a little compassion and understanding.
Before my diagnosis I delivered my last child, @ age 30, after placenta-previa pregnancy. Within 3yrs I found myself slowly recouporating from hysterectomy with excessive tissue ablation and subsequently found myself trying to survive a troubled marriage. Stress & emotion were off the charts!
I was experiencing some tremendous headaches but, bouts with migraines weren't out of the norm prior to hysterectomy. I began also to notice a lump in my thigh (which had been unnoticeable for years) became more prominent & tender while other adjacent areas felt like thickened pads - well beneath the skin but, above the muscle felt soar - I almost let them go overlooked, or be explained away until the crazy sensations of getting bit by a bug but, no bug. A prickling feel or like getting smacked or pinched, or even burned but no cause or mark apparent. I had alot of ramdom swelling & would become so fatigued and achy that I had trouble focusing & functioning in my normal routines.
When, lumps of varying shapes and sizes had grown in my arms as well (but at a more alarming rate) causing much discomfort & seemingly circulatory problem, I finally reached out to my GP and the search was on.
My history & current symptoms met the clinical criteria for Dercum's Disease (with exception of obesity, @ that time, & age of onset) so I was ushered through the process of differential diagnosis ruling out Lupus, MS, Lyme, & the like. It was a blessing to have a doctor that was a partner in my care, as it certainly didn't seem I was getting support from elsewhere (home or work). She even did some of her own cutaneous biopsies, like mole removal before referring me to surgeon & neurologist.
I was excited to see the surgeon for the feeling in my arms was like carrying around so much extra; painful aching weights. Although, he dismissed my conversations toward the newly discovered (rare) Dercum's condition in fact saying upon examination that 'these are Lipomas & they don't hurt", even in light of my tears as he palpated, I begged to differ... he was feeling from the outside but tbey were extremely hurtful to me on the inside!
Although I was riddled with lumps from rice to large marble size from shoulders to wrists predominantly, he agreed to remove the largest most intrusive from my upper arm, which had caused mobility issues, for biopsy & consideration for subsequent liposuction treatments.
I think the most at peace I had felt in ages was when the general anesthesia wore off & neurological studies scheduled. Somehow this all equated to justification for me! Well respected Medical professionals weren't evaluating a hypochondriac, like some may have suggested.
I gotta say persuing your own medical mystery is daunting and I relished in actually finding a trail leading toward answers in light of so many questions ... especially, when feedback from family &/or employers had been less than supportive (in the case of my ex- I can now refer to as abusive).
Ultimately. I learned a lot from the neurologist who DID take the time to talk about Dercums | Adiposis Dolorosa. Much of what he shared with me as to my particular conditions have stayed with me as kernels of truth since.
For instance, Zebra vs. Horse: Zebra is the American medical slang for arriving at an exotic medical diagnosis, when a more common place explanation is more likely. Medical interns are instructed.. "When you hear hoofbeats, think horses not zebras."
Therefore it would be almost futile hoofing around trying to find an esoteric doctor that might have more clues toward a cure (of which none is known) for your ailments.
Furthermore, he would make referrals to MayoClinic where they could study me.
Either scenario ... I would be the guinea pig?
Ultimately, I agreed with the logics shared and relented to simply let him help me manage the symptoms. We'd figure it all out, not to worry. (Of course my supportive then husband had convinced me that esoteric meant 'made-up, nonexistent, fairy tale' and pertained to my diagnosis ~ not a reference about doctors care for zebras. Later he would whinnie or notice my resemblance to our horse, for good measure)
I began with low doses of Nerontin but ended up with high dosage and a Kidney infection. To add insult to injury, the neuro then relocated his practice. I tapered off the drugs. This was a hurdle in and if itself!
During this time i had also been referred to a spinal surgeon for cervical stenosis; who didn't recommend surgery. But through pain management, physical therapy, & spinal injections I began to try and adapt to a better me.
You could say I went rogue sometime after that... But that was the gist of the beginning of this journey for me. I share in hopes someone won't feel the same hopeless desperation!
My initial feelings where that diagnosis was key. I believed once everything came together under a label, then medical intervention would certainly fix! it & everyone around me would rally in a positive manner. In my reality, that was fairy tale fodder.
No matter your chronic conditions or comorbid diagnosis' ... I share a few ideas that may be practical in your journey from mine;
Forgive Yourself!
Make allowances for others ___, you can't change them, only how you responsed. (You're not doing it for them ~ avoid stressing yourself ~ OK to be selfish)
Read up on 'The Spoon Theory'
Learn to say WHEN!, Before it's too late & without apology.
Take time to make sure you're breathing! Literally! Work on your breaths!
Exercise is important look into Yoga & water therapies, some days laundry is enough.
Educate your diet! Cut out Non-Foods!
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