CRUSHED IT! $700 for a CURE!

September is over and so ends the 2013 Crush Chiari campaign for Chiari and Syringomyelia awareness sponsored by the Chiari and Syringomyelia Foundation (CSF). This year was my first to participate as a fundraiser and although I know I drove most of you crazy with my incessant posting, I wanted to share my gratitude with you all for your support. The funds donated through the jars have been tallied and donated to the fundraising site. Those of you who supported me in the Crush Chiari campaign raised $700 to go for a cure! You helped me exceed my goal by $200 and have allowed me the opportunity to be one of the top fundraisers for the cause!

The overall Crush Chiari goal was $15,000 and, although we did not reach that goal, you all helped us raise a lot of money for a good cause. As of this evening CSF has raised $1,665 (11.1% of their goal). Please know that YOUR support helped the foundation raise over 42% of that money by supporting me through my fundraising page.

I want to especially thank the locations who allowed me to place my donation jars at their locations, those of you who donated directly on the #CrushChiari website, those who gave through the donation jars and, most especially, those of you who spread the word by teaching others about these conditions. The support I was given last Wednesday for the wear purple for a cure day was so humbling for me! Those of you who wore purple showed how much you truly cared about me and my desire to find a cure for those of us with this condition. The flood of purple did the trick because every time someone would see those of us matching in our purple attire we could explain how we matched due to the Chiari Awareness Month and we could tell them about Chiari. That was what the whole campaign was about. Thank you for helping me realize my vision!!

I’d like to take this time to thank my family for their dedication to helping me raise money for this campaign despite all of the setbacks we encountered this month. Justin Hair, Ginger & Jim Powell, Amber Love, and Stephanie & Aaron Powell have been the epitome of family during this time. They helped me drop off jars, pick them up, pester you all with posts about awareness and donated not only funds, but their time to support me in this cause. They did this even as I underwent my open-heart surgery last week because they knew how much this campaign truly meant to me. Their support should most definitely be recognized!

The following businesses allowed me to place jars at their locations raising $151.80 collectively for a cure:

Cowboy's General Store

Dismuke’s Pharmacy

Luling Tire & Automotive

NAPA Auto Parts - Salt Flat Feed & Mercantile

Stanley Theater Collectibles

Taqueria Durango

Texas Lutheran University Bookstore

The Watermelon Shop

Plans for Future Fundraising and Awareness for Chiari and Syringomyelia:

Unite@Night, June 2014:

I will be participating in the Unite@Night Walk with the CSF Foundation in June of 2014. I have not selected a date for this walk, yet; however, I would LOVE for you to all participate with me. Here is information from their website about the walk:

“The Chiari & Syringomyelia Foundation’s (CSF) unite@night is a one-mile casual evening walk in various locations around the country and in Canada during the month of June. This walk will bring together people who are suffering with devastating effects of Chiari malformation, syringomyelia, and related disorders such as, but not limited to: Ehlers-Danlos Syndrome, hydrocephalus, intracranial hypertension, dysautonomia, and more.”

You can find more information on their website here: http://www.csfinfo.org/walk-information1/.

Crush Chiari, September 2014:

If you would like to participate in next year’s #CrushChiari campaign by allowing me to place a jar at your business, please send me a message. You can place a jar at your business for any length of time you wish. If you would like to participate only in September, that is fine; however, some have asked to allow the to keep one of my jars at their location year round to raise as much money as possible. I would be happy to make a jar for your location. It won’t cost you anything except counter space and the funds go directly to a great cause!

Conquer Chiari Walk Across America, September 20, 2014:

I plan to do a national walk in September next year to spread awareness about Chiari and Syringomyelia. I will be attempting to set up a walk in the Austin Area. Anyone who wants to help is welcome to contact me. We will begin the process of finding locations in Austin in January. Here is more information:

“The Conquer Chiari Walk Across America is an annual fundraising and awareness event comprised of a series of local walks held on the same day.”

To find out more information about this please visit the website: http://www.conquerchiari.org/ccwaa/ccwaa-main.html.

I don’t plan to give up fighting for a cure for any of these conditions. Chiari and Syringomyelia are a part of my life, despite my utter distain for them, and I want to help others who also have to deal with these situations to have a running start. Raising awareness and funding research is the best way I know to do this at this time. I will continue to fight until a cure is found…and maybe then, I’ll fight to ensure everyone can get the cure no matter his or her financial background. I’ve got a lot of work ahead of me…care to join?

Thanks again for your support! 

Crush Chiari, Not Candy!!

I have talked so many times about raising money for Syringomyelia and Chiari awareness and yet never have…until this September during Chiari Awareness month. I decided I wanted to put my money where my mouth was and donate my money and time to an amazing cause and spread the word about these neurological conditions.

If you wish to donate, please visit: http://csf.kintera.org/crushchiari/mistihair. 

For those of you visiting my blog for the first time, I wanted to share some facts with you about Chiari and Syringomyelia so you have some understanding of what people like me go through daily. Many of us with the condition are unable to have any treatment besides pain management (which doesn't always work). I am not a candidate for the decompression surgery for Chiari (where they remove a portion of your skull to release the pressure) or a shunt for Syringomyelia (where they drain the fluid out of the syrinx [cyst] inside the spinal cord).

About Chiari:

Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. 1 in every 1,000 will be diagnosed with a form of Chiari Malformation.

Symptoms of Chiari Malformation include:

Neck pain; Unsteady gait (problems with balance); Poor hand coordination (fine motor skills); Numbness and tingling of the hands and feet; Dizziness; Difficulty swallowing, sometimes accompanied by gagging, choking and vomiting; Vision problems (blurred or double vision); Speech problems, such as hoarseness; Ringing or buzzing in the ears (tinnitus); Weakness; Slow heart rhythm; Curvature of the spine (scoliosis) related to spinal cord impairment; Abnormal breathing, such as central sleep apnea, characterized by periods of breathing cessation during sleep; and several other symptoms.

About Syringomyelia:

Syringomyelia( sih-ring-go-my-E-lee-uh) is the development of a fluid-filled cyst (syrinx) within your spinal cord. Over time, the cyst may enlarge, damaging your spinal cord and causing pain, weakness and stiffness, among other symptoms. 8 in every100,000 will be diagnosed with Syringomyelia.

Symptoms of Syringomyelia:

Muscle weakness and wasting (atrophy); Loss of reflexes; Loss of sensitivity to pain and temperature; Stiffness in your back, shoulders, arms and legs; Pain in your neck, arms and back; Bowel and bladder function problems; Muscle weakness and spasms in your legs; Facial pain or numbness; Spinal curvature (scoliosis); Numbness and tingling; Spasticity; Paralysis (in severe cases, quadriplegia).

You can find more information by visiting: www.csfinfo.org and www.ASAP.org. As I stated earlier, not all of us are able to have treatment besides pain management. I firmly believe that the money we are able to raise in the Crush Chiari campaign will go to fund research and awareness for doctors and scientists. 

For those of you who have already helped me by putting a jar in your business, donating from your own pocket, or helping me spread the word...please know I am so grateful for you and your help! If you cannot afford to donate, please help me spread awareness. I could really use your help in spreading the word! 

Again, if you wish to donate, please visit: http://csf.kintera.org/crushchiari/mistihair. 

The Big Day

It has been quite some time since I have written in this blog, I apologize; however, things have been completely crazy. My son was born in January and I find myself not having much time to update things as I once had. I wanted to update everyone who was interested in how the labor and delivery went since it was not a “normal” birth by any means thanks to my Syringomyelia. Thanks for reading!

I went to the doctor for my weekly checkup on January 16 and discovered that since my blood pressure was high for several days, I should be admitted for observance for at least 24 hours. Following my 24 hours my blood pressure stabilized, but my symptoms were still present. I saw spots and had a massive headache. They noted that in my lab results I had protein in my urine and was in fact diagnosed with Pregnancy Induced Hypertension (PIH). After several emotional conversations with the doctors, nurses and my case manager, we decided it was in the best interest of the baby and me to stay in the hospital until he was delivered.

On Saturday I started feeling very poorly. I started cramping quite a bit and began having strong contractions. They were coming very fast and I was scared because I was only 35 weeks. We were planning to have the c-section moved up to the following Sunday to allow for my son to grow more and for his lungs to mature. They gave me medication and after several hours they stopped the contractions and I was relieved! They stated they would go ahead and complete a second 24 hour urine test the following day beginning at 6am.

The next day I spent feeling the same symptoms as before. The headache had not subsided and it felt as though everything was becoming more prominent. In the afternoon, while completing the urine test, I discovered that there was a considerable amount of blood in my sample. I called the nurses and they told me to get into the bed and hooked me up to monitors. I didn’t feel strong contractions so I asked if I could take a shower and they agreed. At that time I went to the restroom and discovered even more blood this time and started to panic. The nurses came in once I called and said they needed to call the doctor. When the doctor saw the blood, she examined me and discovered that there was even more blood. She said that the amount of blood I had was not considered normal and I needed to have the baby that night. She informed me that I had a placental abruption.

I went into surgery at 9:30pm and was terrified. The doctors, my husband and I decided that it was safer to have the baby via c-section with general anesthesia due to the Syringomyelia. The c-section was necessary due to the placental abruption and the discovery that my son had turned into a breech position overnight (which was likely what caused all the commotion the night before). During the c-section, my anesthesiologists were very careful about intubating me because of my Chiari type 0. A person with a Chiari should not have their heads hyper extended and they were very careful with me to ensure they did not extend my head too far.

When the doctor pulled my son from me, they discovered that the anesthesia had caused problems for him. His heart and breathing stopped and they had to revive him. For this, I am grateful that I was asleep; however, my being asleep is what caused these terrible issues to have occurred in the first place. The doctors got him stabilized and moved me into recovery and him into the NICU. My goal was to hold my son first, and that was no longer a possibility. I did not know that he was taken to the NICU until I was awake (obviously) and I had a very difficult time with this fact. I was not able to see him until the following morning at about 10am. I pushed myself so hard to pass all their physical tests in order to see my sweet son. Following delivery, I had an uneventful stay myself, aside from some stray bleeding from the placental abruption and the obvious pain from delivery. All my pain was masked because I could not have my little boy in the room with me. I was released four days after delivering and did not anticipate the NICU pediatrician would let my son go as we had hoped. We were pleasantly surprised when he stated that he would allow him to come home with us!

I spent 8 days in the hospital. None of these days were related to my Syringomyelia or Chiari malformation. I am not certain of what decision I would have made if I were to do this all over again. I realize that my son was affected by the anesthesia; however, he is here, healthy and in my arms just as I had hoped and prayed, despite the way he entered the world. I have had a strong relapse into the world of pain and discomfort caused by Syringomyelia following the birth of my son. I did not have nearly as many symptoms and felt almost “cured” while pregnant with him. Now I am back to the way I was before my pregnancy. After many doctor visits and MRI’s later, it has been decided that there is nothing anyone can do to minimize my symptoms. For now we are only treating the pain and hoping that one day a medication will help slow the degradation process. It’s not an easy thing to have, but it was the hand I was dealt and I will try to fight this as long as humanly possible – cure, or no cure.