Active environmentalist and baker extraordinaire with a voice that floats one on melodic waves, this is Heidi Rose Theis.
Or at least this was Heidi. Two years ago Heidi was thrown from a horse. She broke her leg and tailbone and injured her kidney. Within less than a month her foot and leg were turning purple and it was flushing hot and it felt like it was burning from the inside out. Within the next couple of month months, her other leg and both arms were turning pink, red and purple and she was feeling hot in all her extremities and face.
Heidi began living in front of an air conditioner, covered in rags which had been soaked in ice water, and ice packs to cool herself down and keep herself from blistering. Still, just the breeze from the air conditioner was torment to the skin. All the lights had to be turned out and blackout curtains installed because any light, including sunlight, increased the burning sensation she was experiencing. Today, Heidi lives in the dark covered in iced rags 24 hours a day, 7 days a week, feeling as though acid is running through her veins and is being poured over her.
The last two years have been a relentless battle with the Medicaid (Medi-Cal), insurance systems to get approvals to visit various doctors in hope of getting a diagnosis that correlated with all of the symptoms. The battle didn't end with the insurance companies but manifested when dealing with certain doctors. Being the individual humans that they are, doctors responded in many ways. Some hospital doctors had told them the purple and burning sensations were normal and that they were more concerned with her throwing up and dehydration. One doctor said, " This is totally beyond me. You need to go see a rheumatologist or a doctor with expertise I do not have." A few gave a "definitive" diagnosis, which turned out to be incorrect. Some said, "I am a bit baffled, let us try this or that." Other doctors just simply told Heidi it was all in her head. Another told her it was obvious her parents were abusing her. Heidi's and her mother's hope began to waver. Although, often feeling like they were on an endless roller coaster they never gave up the search for a diagnosis that addressed all of the symptoms.
Finally, almost two years after the initial injury, they walked into a doctor's office. She took one look at Heidi and said, "I've seen something similar to this in soldiers returning from Iraq. It is called CRPS or RSD - Complex Regional Pain Syndrome or Reflex Symptomatic Dystrophy. On top of that I believe the underlying stomach issues and the smaller details my stem from fibromyalgia." This diagnosis hit everything right on the spot. A week later, a second doctor, one she had been seeing for quite some time said, "Oh, no! I thought you had already been to a neurologist and been diagnosed CRPS or something related to that. It is in my notes from the first time I saw you. I thought I was supposed to deal with the rheumatology portion such as the fibromyalgia." Heidi now had doctors that saw and understood. CRPS coupled with fibromyalgia fit ALL of the symptoms and with it came treatment options.
Heidi's hope was rekindled after meeting with Dr. Prager and Dr. Jacobs who specialize in CRPS. These Dr.'s listened, they explained and they understood and genuinely seemed to care. For the first time in months she saw possibilities and with those the hope that although the journey ahead might be long and difficult, there was a road to travel out of the burning existence of CRPS. This site is dedicated to Heidi's journey of hope, to all those walking the path with her, and to all those on the same path.
Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things.
1 Corinthians 13:4-7
Well, last weeks treatments were both joyful and interesting to say the least! We were able to touch and kiss Heidi for the first time in two years. She still has flare ups but not to the same degree as before, and she has had time to relax from the pain. The pain ranges from a 2 to a 7. We still have a lot of work ahead but it is looking brighter!