Busy Weekends

Wow, time has gotten away from me recently! The past few weekends have been crazy busy.

Two weeks ago I traveled up to Idaho for an Ivy Girl Academy workshop. The workshop went so well! We had 56 beautiful young ladies join us and make it a huge success. I love watching these girls and how they grow throughout the day. We had a handful of girls at this workshop who did not want to be there when they first arrived. One girl actually left, but luckily came back about a half hour later. I pay particular attention to these girls and loved watching them smile as they make new friends, volunteer for things, and really get involved throughout the day. Following the workshop a lady came up to us just beaming, she told us that she is a foster mom and two of her foster daughters had been at the workshop that day. One of them was very against it from the start, but was bouncing off the walls with excitement by the end of the day. With tears in her eyes this foster mom thanked us for taking the time to do what we do, she could not believe the change that had come over her girls. Hearing/seeing things like this makes all the hard work we do worth it. If we only help one girl it's all worth it! I love that I get to be a part of such a wonderful organization!

Last week I attended the Chiari Walk Across America in support of chiari awareness and research. It was a fun day mingling with fellow chiarians and feeling of their support. The worst part of having an incurable chronic illness is feeling all alone in it. It was nice spending the morning with people who get it! 

At the start of the walk everyone was given a bead necklace. They gave purple beads to anyone who had chiari, silver beads to those with friends and/or family with chiari, and green beads to those who were walking in honor of someone who had died from chiari. I was shocked and saddened by how many people were wearing the green beads.

Living with chiari is not easy. Some days are great and relatively symptom free. Some days are terrible. Some days I just lay in bed crying, begging for it all to stop. Some days I'm just tired of hurting, crying, missing people, and missing out on fun things. There's so much in life I want to accomplish, so much I'll never be able to do. I want to live freely and not have to think out my days to see if I'll have enough energy to do what needs to be done. Some days I am so tired of the battle that I just want to throw in the towel and give up. Then I remember that every day is an opportunity to grow, to learn, to live. Each day is a gift and each day my fight matters. I may be knocked down, but not out. Crying, but still breathing. Broken but brave. Each day is a day to have hope, courage, and faith; because losing this fight is not an option! 

For more information on chiari go to conquerchiari.org

Here are just a few pics from the walk.

Chiari Awareness

Lately there has been a lot of awareness for the awful disease of ALS with the ice bucket challenge taking the world by storm. However, I'm writing to tell you of another awful disease that has no cure and not many are aware of. I know more than I'd like to about this illness because I live with it every single day. 

Arnold Chiari Malformation is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine causing many symptoms. Chiari has wide range of diverse symptoms and affects everyone differently. 

I was diagnosed with Chiari in October of 1999. I was having pain in my back and doctor's sent me in for an MRI. I got a call saying that the MRI results looked fine...a week later they called back. This time they informed me that the MRI had barely caught a malformation at the base of my brain and they already had me scheduled to see a neurosurgeon. After an extensive review of my medical history the neurosurgeon explained that I started having symptoms of Chiari when I was about twelve. However, so little is known about Arnold Chiari that is took them seven years to diagnose it...and then it was only on accident!

A month after discovering the Chiari I underwent brain surgery. The surgery is not a cure! It is only a way to help relieve some of the pressure on the brain and spinal column. Roughly six months after my surgery I began having spells of unconsciousness. During a typical "spell" I lose consciousness without any warning and I am out anywhere from 5 minutes to 2 hours. During this time I have severe pseudo seizures. I shake uncontrollably as though I were having a grand mal seizure...but my brain waves are always normal. I awake from these spells extremely sore and weak. It typically takes me 2-3 days to recover from it. I have been having these spells about once a week for the past 15 years. 

I have seen doctors all over the country including at the Mayo Clinic in Minnesota and I still do not have an explanation for my spells or any ideas on how to treat them. We know that these spells are neurological and somehow related to my Chiari, however doctors still do not know enough about Chiari to know what is causing my spells or what to do about them. 

Along with these spells I battle other symptoms of Chiari daily such as extreme fatigue, terrible headaches, extreme dry eye, pain in my neck, shoulders, and back, muscle weakness, constant tingling in my feet, constant ringing in my ears, hearing loss, etc. The list goes on and on. 

I do the best I can to stay positive. I try to keep a smile on my face no matter how much I am hurting. I know a lot of people look at me and tell me that I don't look sick...that is my goal. However, underneath that smile I am suffering almost every second of every day. There is no cure for Chiari or it's symptoms. Most people don't even know what Arnold Chiari is...including the doctors, ER staff, and EMT's that work on me! There needs to be more research and awareness. I shouldn't have to go into the doctors office and explain to them what Chiari is! Living a life like mine it is very easy to give up hope, however, I am still holding on to some! I am holding on to hope that someday someone out there will find the answer. I have hope that someday someone will figure out what is causing my spells and think of a way to stop them. I have hope that someone out there will figure out a way to calm down Chiari symptoms without adding new ones due to medication side effects. Unfortunately these things won't happen if people don't even know what Chiari is!

On September 20th my family and I are participating in a walk to raise awareness and funds for Chiari research. My hope in doing so is that we can make enough people aware of this illness that maybe we'll reach the one who has the smarts and the initiative to take the funds we raise and find the answers so many of us Chiari sufferers are hoping for. 

My goal in sending out this email was to make you aware of what Chiari really is and maybe you can pass that info on to someone else. However, if you do feel so inclined to support my family and I on this walk and also help me raise funds for Chiari research you may donate at https://www.conquerchiari.org/ccwaa14/TiffanyGoodson 

 

I want to stress that I did not write you today to ask for money. Please don't feel any pressure to donate unless you'd like to. My main goal here is awareness!! Thank you for taking the time to read this. 

Luvs & Hugs,