I spoke with my Sis Terri today about the forum. She asked that I try to share her story with you since due to the RSD she has endured starting with diagnosis in 1995 she has ultimately been losing her sight along with all of the other things others among humanity tend to take for granted. Due to RSD affecting her with numbness in her fingers as well, she is compromised both as to sight and the means to type well. She chuckled, chuckled mind you, when I asked whether she would join the Forum, because she cannot use the computer. I should have known, I just didn't think.
Terri's saga began with knee surgery back in the day before knee replacements were even dreamed of, and then a second, third, fourth, and then her fifth. All of this occurred before 1995. She was a chef and artist keen with a brush. She enjoyed running a kitchen. She was queen, and she cooked very well. No, she did not study at le Cordon Bleu, but Terri prepared many a dish pleasing to the palate. Physical therapy was her lot after surgery, some think too aggressively at the time, but she pursued it with gusto so she could return to work. That's what she did. Work hard. Work harder. The fun experienced being among people. The RSD struck.
Pain, swelling, lots of swelling, and infection set in. The knee work might have been OK had she been able to avoid the infection. Gangrene was the follow on. This is 1995. Meds were tried at the time even though it seemed the docs were struggling to understand her affliction. She held on until 1996, and we were there when Terri, 5'8" Terri lost her first leg at the hip. The RSD, of course continued. Pain, lots of pain. Always burning. Never stopping. And it didn't stop with one leg, symptoms spreading to the other leg, which Terri lost surgically in 1997. Her RSD was of such an advanced state, that her docs included her in medical journals and texts regarding the complexity of her disease saying she is one of a kind in this fabric of humanity. The symptomatic osteoporosis which invaded her courtesy of RSD had reduced her legs prior to each amputation to gangrenous flesh only, to the docs' amazement neither cartilage nor bone remained in the removed limbs. Terri became 2'6" tall. She now weighs 70 lbs. But you should see her pop a wheelie on her electric wheelchair. Awesome. And the smile that creases her cheeks, Priceless.
Now her demeanor has remained a bright spot of cheer for others as she has continued to paint or draw for the sake of sharing her blessings among those around her. Recently, she participated in a prescribed chemotherapeutic treatment generally reserved for oncology patients in an effort to stem the RSD tide. That trial failed her; nevertheless, Terri befriended many on the floor during the several days she was in residence. They had been searching for artwork to adorn posters and T-shirts for their floor so Terri set about to do it. They liked her ideas!
The shirts are now in silk screen production for that hospital floor. Terri's cheer has stricken home again to the aid of others.
Sis has certainly not been without her trials as her body has continued to fail her. Symptomatically she has fairly defined RSD and the spasms she has endured reach ALL aspects of her body, even her blood vessels. Her heart has taken a toll due to the RSD spasms, and she has been resuscitated from an appointment with St. Peter 7 times, yet she persists. I told her today it has to be, HAS TO BE, because she was meant to do something more before "going home." Terri pointed to her t-shirt oncology project with a smile in her voice as she agreed "**** right!" [I deleted the profanity, but you get the point]. She doubts she could be revived again because her bones are too brittle from the osteoporosis to be pressed in a CPR maneuver.
I cannot reveal her full name or location because the meds she takes are far too controlled to risk it. She is prescribed 17 different meds per day, among which she takes for pain 30mg of morphine sulfate every hour, 400mg of what she calls pure morphine twice dailiy, AND the fentanyl for those times when pain is so excrutiating that she just can't take it. Sleep no longer comes except in fits and spurts, as she cannot rest and even the sleep meds I take would not begin to phase her. Heart meds a plenty, and on and on, but Sis prevails.
We have become accustomed to Terri being Terri as she is. So skinny now, her bones protrude everywhere. I tried designing a seat cushion for her to sit more comfortably and it seemed the trick for a few days, then the bones were making holes in her skin. Memory foams are more forgiving, but don't give her what she needs. I so wish I could help. We all wish we could help. She feels ready to meet God face to face, but His agenda is otherwise for now.
So, here I type, writing on Terri's behalf, thinking as I do about her that she has dealt with so much more than I, surely I can help bring her smile to you.
Surely her grief has been much. Mine, not nearly so... if you have touched any of my prior posts, but then how can one compare the pain of any sufferer to another? Simply stated, pain is so subjective as to evade real quantification or comparison. Terri's circumstance serves to humble and to render me SO MUCH MORE GRATEFUL for the SCS implant I approach. She has been through the screening to determine whether SCS could possibly help her and the answer was a reverberating "I am sorry, this is not an answer for you, Terri."
She is willing to participate as she can, through me, to help any with their thoughts, questions, perplexity about the RSD she knows so personally. Her faith is strong, and she is a testament to one who, though stricken, has striven to help others. Thus, the hearty "Howdy" from Terri to you all!
Proud of one whom I love,
Mark56