Happy Valentine's Day! Almost everyday since my last post I've meant to update my blog and think about what I'm going to put in it and then life gets in the way. This is a GOOD Thing because I have a life again :)
Last night, David and I were talking and I said, "Do you realize that at this moment one year ago we were getting our last minute details together for us to leave to go to Maryland for my surgeries."
David said, "Oh my gosh, you are right!"
My response was, "I never really thought about what my life would be like one year after my surgeries. I'm so blessed and my life is so different now and much more normal." I thanked him and I thank The Lord and Dr. Henderson for my surgical successes. That was such a huge event in our lives and our entire family live with the results of that event every day.
Over the last year we have had so many blessings, changes, and hurdles. But for the most part everything has been very positive. Grace is blossoming in her new school, we have made many new friends from so many different realms of our lives, and we try not to take ANYTHING for granted because we know how quickly life can change.
Here are the highlights of my recovery:
I have officially been diagnosed with Ehlers-Danlos Syndrome - Classical (Classical EDS) type by my geneticist Dr. Claire Francomano at the Harvey Institute of Genetics in Baltimore, Maryland. I think she is also the BEST in her field. That testing consists of going over much health history, lots of measuring of body parts, pokes, and prods but not blood testing. I am a 9 of 9 on the Beighton Scale. (My rheumy here said I was 4/9...ha!) My knees and shoulders ocassionally pop out or sublux and it seems that I'm a little more predisposed to bursitis. But the really bad thing for me is that I do not absorb vitamins which creates many issues over a long period of time. Hence, I try to live a healthy and "relatively" holistic lifestyle. Dr. Henderson says EDSers should go Gluten Free but oh goodness that is difficult. www.ednf.org
I have also been officially diagnosed with Postural Othostatic Tachycardia Syndrome (POTS) by my cardiologist Dr. Klein, here in Greensboro, NC. He was amazing and I think took on my case out of sheer interest and curiosity. That testing consisted of me fasting and going to the hospital the next morning for a tilt table test (TTT) which is supposed to last about 2 hours. In a cath lab type area, I was strapped down on a narrow table and had an arterial line put in - ouch. You start completely horizontal and are raised to a 45 degree angle or so and then to a 90 degree angle. Your heart rate, blood pressure, and the amount of time it takes for you to pass out (or throw up) are measured and as I mentioned it usually takes about 2 hours. It took me about 5 minutes before I started sweating and starting to pass out. They immediately returned me to a horizontal position and tried to make me comfortable ... the test ended. I heard Dr. Klein behind the glass talking to my GP, Dr. Kim on the phone with such excitement in his voice...."She has POTS, YES, She has it." Dr. Klein came in with this big smile on his face and said, "I didn't think you had it but you do. Eat lots of natural salt and drink lots of water." I was terribly terribly sick the rest of the day. My doctors are starting to believe me.
My neck incision is "still healing." This is probably because of the EDS and not the actual surgery.
The winter weather and cold fronts have been quite an adjustment for me as I now get pressure headaches when a low pressure system comes through. My body comes to a halt. I do have to take medication for these headaches and the nausea but this doesn't happen too often.
The muscle spasms are fewer and further between which makes life much more comfortable :- So basically I'm not on any painkillers or meds. Or at least I don't take them.
I have had the Spectracell micronutrient testing (http://www.spectracell.com) which is extremely helpful in showing vitamin deficiencies which are a horrible problem for the human population, as well as EDSers.
On the up side of things, I am usually able to feel something "coming on" so I am able to prevent an unpleasant situation from becoming a bad situation.
If you see me out and about and ask me how I'm doing I will most likely say, "I'm great! How are you?" I don't want to bore people with my health issues and but I do want to raise awareness about these cruel and horrific conditions that don't always end your life but do steal your quality of life. Thus, I have made a t-shirt that is made of organic, eco friendly fabric, and dye. It says... FASCINOMA profits benefit the Chiari Syringomyelia Foundation. www.csfinfo.org
I have so much more to add but will let you digest this first.
Please feel free to e-mail or facebook me if you have questions.
God Bless you and have a GREAT day :)
Leigh Anne
leighannebuchanan1@hotmail.com
