My Alien Abduction: #EhlersDanlos Syndrome #EDS @teaminspire @TheEDSociety #ZebraStrong2016
Greetings, dear readers!
Yes, I know, it has been quite some time since I have posted a blog. I could provide a litany of reasons why I have essentially vanished from social media, but today - for the last day of Ehlers-Danlos Awareness Month - instead I would like to focus on this debilitating and degenerative joint disorder. I have had Type III EDS all my life but was not properly diagnosed until 2011. Then all the puzzle pieces began to fall into place: the sprains, the splints, the surgeries.
My symptoms have continued to worsen to the point where pain and injuries frequently require complete bed rest, all from a condition that others cannot even see. (Effects on social life of invisible disorder.)
The following events occurred in 2007-2008, three years prior to my diagnosis. In 2009, one of the physicians who had treated me sent me this email:
Ms. Saucier -
I have been asked to give a presentation on evaluation of abdominal pain to a large conference of nurse practitioners here in New Orleans. I was wondering if you would mind typing up your story and emailing me. I thought hearing the story "from the horses mouth" would be a useful excercise for the presentation.
Please let me know if you're interested,
This is my story:
Tietze Syndrome: My Alien Abduction
In February of 2008, I went to a gastroenterology clinic for what came to be described as “right upper-quadrant post-prandial abdominal pain.” After an examination and discussion of my symptoms – nausea, pain, and fullness in the right upper abdomen below the ribs – Dr. W concluded that the problem was with my gall bladder and ordered an ultrasound. Surprisingly, the gall bladder looked fine on the ultrasound; so Dr. W sent me for a HIDA scan. My gall bladder performed perfectly on the HIDA scan, and Dr. W had to start from the beginning with a full evaluation.
I experienced the pain as either a dull ache on my right side, or as sharp, intense, labor-like pain that began usually directly below my sternum then radiating to below the rib cage and to my back. Nausea accompanied the pain with the intensity on a similar scale and causing a loss of appetite. Following an accident that required knee surgery and rehabilitation, I had gained weight; but now I had lost 16 pounds in two months.
The symptoms had begun a few days after Thanksgiving with an episode of severe abdominal cramping, although I did not have any more pain until a few days before Christmas; then the episodes became more frequent. Complicating the evaluation, for a few weeks in November I was in Thailand, where I consumed fresh produce, shellfish, and sushi.
Over the next several weeks, Dr. W ordered a series of tests that would consistently rule out all manner of medical possibilities, from ulcers to celiac to parasites. I provided stool samples, as well as blood and urine. I had a CT, an endoscopy, a colonoscopy, and a gastric emptying study. A congenital kidney defect was considered and ruled out as a possible cause of the symptoms. Various diets – low-residue, gluten-free – were ineffective.
In the meantime, the symptoms worsened with the dull ache constant and the sharp, intense episodes becoming more frequent and often debilitating. By April, the pain radiated from beneath the ribs to my back and caused numbness and tingling in my right shoulder and arm; and I noticed that the pain would cause my feet to become ice cold. With each incident, I found I could only lie flat on my back and wait for the pain to pass, which could take one to several hours. I also found that lying on my left side would exacerbate the pain on the right side.
Months of debilitating pain, as well as not being able to identify the cause, affected my emotional well-being as well. Frankly, I did not think I could continue living with the pain. I came to identify the fullness I felt as an “alien” inside of me; and with the pain at its most intense, I would cry and beg my husband to cut it out of me. In fact, I suggested to my doctor that he just cut me open so that he could find the source of all of this and remove it.
At a loss, Dr. W referred me to XXX Medical Center, where I met with Dr. NW. He repeated some of the previous tests and ordered an upper GI series. Still no answer.
Following a second CT scan, I essentially gave up on Western medicine. Previously I had attempted acupuncture for the symptoms with no results, but now after 6 months of misery and losing 35 pounds, I willingly tried the sacred medicines of Peru.
|Flower bath prior to ayuhuasca ceremony|
|Receiving sapo from Matzes Indian|
|In the throes of the sapo effects|
|The Reiki healer in Cusco|
He said to prevent it from returning, I should channel my sexual energy through yoga. I cannot attest to the efficacy of providing mantras to abdominal masses, but I
never again experienced the excruciating pain to the level that I had before.
In light of the benefit I received from the alien removal ceremony, I began to wonder if my condition were not a somatoform disorder. Once back in the states, in addition to taking up yoga, I began seeing a specialist in somatoform disorders in the hope that I would be able to eradicate the pain and discomfort completely. After several months without results, I started to think that I might just have to accept the pain and try to be grateful that the labor-like pains had gone, presumably with the alien to that other planet.
Then in October, I started having problems with the thumb on my left hand. I went to a hand specialist who diagnosed trigger thumb and prescribed 7.5 milligrams of meloxicam. Although the drug did little to help my thumb, within a day the abdominal pain was gone. After ten months of debilitating pain and a weight loss of forty pounds, a tiny yellow pill that cost $4 for a month’s supply alleviated my symptoms.
I immediately conferred with Dr. W and Dr. NW and explained about this miraculous drug. Within moments, Dr. NW provided my diagnosis: Tietze syndrome — a form of costochondritis, an inflammation of the costal cartilage of the ribs. The reiki healer in Peru had been correct.
After nine months, my alien baby was gone.