About 12 years ago, I met an amazing woman named Dollie. I mention her by name only because she has since passed away. She had RSD and diabetes. She had developed a blood clot in her leg and it moved to her heart before the doctors could stop it. She was a smart and goofy lady and she was also the first dual-diagnosis-advocate I’d ever met.
I worked with her to make packets of RSD information to give to non-RSD doctors, nurses, therapists, anyone that asked for more information and even for those too ignorant to admit their lack of knowledge. I remember leaving her house with 50 of these packets one day, only to return four days later for more.
It was the week that I was “auditioning” a dermatologist for my newly developing case of psoriasis (thank you RSD), as well as the week of the I‘ve-been-on-heavy-painkillers-for-over-8-yrs-trip to the gastroenterologist. I gave the packets to the doctors, nurses, receptionists, technicians, therapists … whatever I could do to raise awareness. And it paid off … for the most part!! The Derma-Dude got my little patches of psoriasis under control and had taken the info in the packet to heart. He would tell me where he would have to touch next and he gave me a few seconds to prepare for it. My PT and OT loved the packets!! They shared them with the other therapists in their office as well as the in-house therapists at the hospital. But not every medical professional received the packet with that much enthusiasm. My gastroenterologist (who will now be known as The Gut Buster) was the worst. He handed the packet back to me, telling me that he didn’t need to read it because I could tell him everything that was in it. This creep (albeit very good his particular discipline) tried to schedule my colonoscopy to take place in their office the next day. I told him that we needed to do it at the hospital with my anesthesiologist present to sedate me and then give me the nerve blocks to combat the added pain that the procedure would surely provide. He laughed at me. Yes, laughed AT me. But because I stuck to my guns about it, he finally agreed. Even all of these years later, he has still not apologized to me, but at my follow-up appointment with him, I saw the packet that I had given my anesthesiologist in the Gut Buster’s file on me. (I gave the anesth. a packet just to show him what I was up to.)
I need to tell you what re-lit this fire under my tookis!! While stalking the FB page of the Warrior Mama this morning for updates on the Penguin, (a nice little shout-out to her facial feeding tube stickers) I read her post about a nurse who walked into the Penguin’s room last night, unaware of RSD, and touched the girl’s socked left leg. (The Penguin is in the hospital for her temporary gastric stimulator installation.) From the way the post sounded, the Penguin’s scream could be heard throughout the floor. And then, while discussing the incident with the morning nurse, she questioned the use of Ketamine as a treatment for the young Penguin. (Lady, she’s there for her tummy, not to have you question her RSD specialist!!) We need to stop this ignorance!! Hence, packets!!
So many details and treatments and medications have changed and been added to the plethora of ever-developing information on RSD that I cannot re-use the packets from 12 years ago, but I can use them as a guideline to create a new one. When I am done, I will make these packets available here for you to print out and take with you to your appointments to give to your “specialists, et al.” … and I’m sure I can grab a few of my other Bloggers to post them as well.
BUT … I cannot do this alone. I need YOUR help, RSDers and Caregivers!!! If you have ANY information that you think needs to be included in the packet, please email me at havefaith_91@yahoo.com.
I have faith that we will raise even more awareness this year. Despite the heartbreaks and setbacks, as long as we band together, even from across the miles, we can make a difference, make people aware, and give ourselves and other RSDers hope in the process!!
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