Our Personal Journeys

Below are candid testimonies about diseases, conditions, and/or ailments that have affected many of us and/or those that we love. These are Our Personal Journeys.
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Cerebral Arteriovenous Malformation (AVM) – a malformed collection of blood vessels within the brain, characterized by tangle(s) of veins and arteries.

Wikipedia Link: http://en.wikipedia.org/wiki/Cerebral_arteriovenous_malformation

Tonya’s Story – My husband first suffered from this condition, which caused him to have a brain hemorrhage, back in 1992. It wasn’t diagnosed as AVM until 2005 (13 years later) after complaining of severe, recurring headaches. In 2007, he underwent Gamma Knife Radiation treatment with hopes to get rid of the AVM. We learned the early part of 2009 that the AVM was still there, and on the recommendation of his specialist, on June 2, 2009, at the age of 36, he underwent embolization then brain surgery the following day to have the AVM completely removed. The surgery was a success, and recovery included overcoming slurred/impeded speech, balance/centering (mobility) issues, head/facial swelling, and severe headaches.
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Polyp – an abnormal growth of tissue projecting from a mucous membrane.

Wikipedia Link: http://en.wikipedia.org/wiki/Polyp_(medicine)

Andrea’s Story – After suffering from acute bouts of burning sensation in my stomach, I was recently diagnosed with 25 polyps, which is pretty rare having that many. My treatment includes 4 pills of omeprazole a day, upped from the initial 2 that I was taking. I also must have my blood checked every 3 months for anemia.
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Celiac Disease – caused by a reaction to gliadin, a gluten protein found in wheat (and similar proteins of the tribe Triticeae, which includes other cultivars such as barley and rye).

Wikipedia Link: http://en.wikipedia.org/wiki/Celiac_disease

Megan’s Story - I was diagnosed with CD in October 2008, shortly after the birth of my 2nd child. Throughout my pregnancy, I was sick almost every day. After I gave birth, I naturally assumed the sickness would ease, but it did not. My twin sister, Mara, was diagnosed with Celiac Disease a few years back so my GI doctor tested me for that first. I had a genetic test done, which came back positive, as well as a endoscopy, which showed damage due to gluten.  Since being gluten free, my life has become much more manageable and I hope to spread awareness around the world about this disease, which effects so many, yet often times goes undiagnosed. I was also diagnosed with Crohn’s disease in March 2009, in which I am currently receiving IV therapy treatment for.

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Crohn’s Disease – an inflammatory disease of the intestines that may affect any part of the gastrointestinal tract from anus to mounth, causing a wide variety of symptoms.

Wikipedia Link:  http://en.wikipedia.org/wiki/Crohn%27s_disease

Mara’s Story -
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Suzzanne’s Story -
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Diabetes – a condition in which the body does not produce enough, or properly respond to, insulin, a hormone produced in the pancreas.

Wikipedia Link: http://en.wikipedia.org/wiki/Diabetes

Dothlyn’s Story -
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Marla’s Story -
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Amy’s Story -
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Brain Spasms/Migraines – a neurological syndrome characterized by altered bodily perceptions, headaches, and nausea.

Wikipedia Link: http://en.wikipedia.org/wiki/Migraine

Tasha’s Story – My story is probably not unlike many women who have been diagnosed with migraines. Because migraines run in my family on my mother’s side among the women, my diagnosis came at the age of twelve. Consequently, I have been battling migranes for sixteen years, over the course of which they would only randomly occur, making a bit more tolerable. It has only been in the past year that the headaches had grown so intensed that I could hardly function most days without needing to lie down, in hopes that the incessant pounding and pressure in my head would cease. It would feel as if my head would explode, and the most severe of headaches would cause my ears to ache to the point that I’d become hyper-sensitive to any type of sound, even the slightest sound seemed amplified by 1000. These headaches also left me unable to focus my eyes.

In May of this year, when my over-the-counter drugs had run out and nothing else seemed to help, I consulted my primary physician, who then prescribed me a stronger dosage of migraine medication. Unfortunately, the Topamax that I was prescribed had an adverse affect on me than it had on others who found it helpful. The small dosage that I’d take not only made me sick, but also seemed to alter my personality, leaving me both depressed and apathetic in many instances. My boss even noticed a change in my personality. I went from this outgoing, out-spoken, naturally-hyper, vibrant girl to this mellowed shell of a person, who found staring at the walls interesting.

Needless to say, my doctor and I went back to the drawing board to find the right medications for helping with the intensity of the headaches. We tried another three medications to no avail; they either had no effect, or made me sick. It got to a point where I couldn’t get comfortable enough to lay down my head; anything touching my head would cause me to want to regurgitate. Usually, it would take me about an hour to get comfortable, and even then, I could never sleep for too long in any one position. At one point, my doctor thought that I might have a severe sinus infection, so she put me on steroids along with the new medication, but I felt no change. We then decided to try one more medication, schedule an MRI, and consult a neurologist.

As with the previous four or five, this new medication did not work either, but the MRI came back normal, which was a relief. Still, I was becoming a bit illusioned by this time, thinking perhaps I was just imagining the pain, that it was all in my head. So, in June, I went to see the neurologist, and I got answers. He explained that those pressure-feeling headaches–that would flare up on the verge of any activity–were causes by brain spasms. And, since I was having more than one type of brain spasm, I was sensitive to touch and sounds. To try to alleviate the pain, he put me on an inflammatory medication along with the migraine medication, and the combination has actually helped with the headaches.

For about two weeks now, I have been headache-free, and I am able to do so much more then I could three months ago. I have to continue to see the neurologist and my primary physician every couple of months to make sure the headaches remain at bay and the medication is still working.
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