- Whenever I use my handicap parking sticker.
- When I had to use a wheel chair at the zoo.
- When Greg had to call a couple of pastors on a golf cart to lift me off the ground and take me back to my cabin at camp meeting. And I couldn’t even speak to say thank you.
- When I got stuck in the gym at camp meeting “wall walking” because the visual disturbance of the crowd had triggered a vestibular migraine. And then I couldn’t leave because it was too hot outside. Every time I’d try to catch a ride on a golf cart other people would get on ahead of me and I'd have to retreat back into the a/c. (We call it my "pool of Bethesda moment".)
- Every time I wear my cooling vest and people run in all directions because they think I’m packing a bomb. (Ok, so that one might be a little embellished. But the insecurities come out like I’m 14 again and I feel like everyone is staring.)
Thursday, August 27, 2015
Saturday, February 21, 2015
Saturday, January 24, 2015
Wednesday, October 8, 2014
Today Wal-Mart Phenomenon did not get me! (That is an actual term that my neurologist used to describe the weird migraines that occur with POTS in large places like Wal-Mart.)
On the way home the kids screamed and I didn't flinch. No inappropriate adrenalin rush. We listened to music. We not only listened to music but did so at a volume that the kids like And I like it to! The alternating light and shadows on the road did not phase me. I am an emotional person, but even with all we have gone through lately, I rarely cry. I don't have time to. But on the way home today I was listening to the loud praise music and fighting back tears. It just felt so good to feel good.
So with all the sad news posts lately I wanted to share some good news. And after a day of home school and grocery shopping I had the energy to write it! Amazing!! Now looking at this again several hours later, I am absolutely exhausted and wished I'd rested instead of writing. But I'll learn to balance bouts of energy. I'm just not used to having any! Fall has arrived and I am starting to feel better. My doc had promised that I should feel somewhat better in spring and fall and I'm thrilled to see he was right. I am so thankful.
So with optimism abounding right now I'll share some of the perks of having POTS.
- Salt. Most people have to try to limit their sodium intake. With POTS however, sodium helps. It increases blood pressure and helps keep fluid volume up. This gives your heart more to pump making it easier to get blood to your brain. In fact my doc kept telling me I wasn't eating enough salt. I couldn't possibly eat as much as I was supposed to so now I take sodium tablets in addition to eating lots of salt. This is how much salt I'm supposed to eat a day!
- Compression Stockings. OK, it might be a stretch to call this a perk, but they really help. They are hideous. At least the ones my insurance pays for are. It's often to hot for stockings with jeans and stockings with shorts make my legs look fake, literally. One day I was in my yard wearing said hideous stockings, capris and tennis shoes. (Give me a break people. I live in the middle of nowhere and was not expecting company.) Well, the FedEx guy caught me by surprise. I have never seen a grown man stare so blatantly with his mouth hanging so wide open, and I do believe I was given the power to read minds for just a minute. And this is what the FedEx guy thought, "Seriously! How have I been delivering to this girl for years and never noticed that she is a bilateral amputee?" I smiled, grabbed the package and darted into the house, while FedEx guy thought, "No wonder I never noticed. She sure moves fast on her prostheses!" (Clearly FedEx guy has some medical background.) So this uncreative girl has been forced to use her right brain just a bit. I cover them with cheep, cute tights. Not genius but I was proud my exhausted brain thought of it.
- Laughter and jokes. As seen by my run in with Mr. FedEx, often there is nothing a Potsy can do but laugh at herself. And there are plenty of jokes out there to laugh at, as well as a whole list of "You might have POTS if..." My favorite answer is "if you have enough medical material to be a stand up comedian, but you can't stand up." So here is a pic that makes me laugh.
- Most important are family and friends. I have a very difficult time asking for help but I have great family and friends. Many of them recognize when I am in need and help out without my even asking. My husband is beyond incredible and does anything and everything he can to help. In fact, Aiden asked Greg tonight, "if you could have anything in world what would it be?" Without a seconds hesitation Greg answered, "for Mama to be well." My mom unfortunately understands all to well what I am going through. And she still does so much to help. Friends near and far have encouraged and prayed. This means so much. I knew what a great support system I had before, but POTS has made it abundantly clear.
- And of course I am learning to trust and depend on God and His strength. So often I truly have no means of my own to get through and I know it's only by His grace that I do. That He cares to help me is the real phenomenon that I pray I am constantly overcome by.
Tuesday, September 30, 2014
Thursday, September 25, 2014
- Ringing in ears
- Light, noise and motion intolerance
- Right sided weakness
- Slurred speech
- Pain in legs, back and neck
- Blurred vision
- Numbness, tingling, cramping of hands, feet, legs, and arms
- Inability to sweat, causing inability to regulate your own body temperature
- Sick sinus syndrome requiring the need for a pacemaker
Thursday, June 2, 2011
Below are the ladies and babies that stayed together since our husbands and older kids couldn't come. We had a blast!
When we started the adoption process I expected to gain a daughter. What I never expected was to gain an entire new extended family. But that is exactly what has happened. I cannot imagine our family without our daughter, but I also can't imagine life now without my new family, my sister's in Christ.
We pray, worry, laugh, cry, rejoice and find support together. We are there for each other when we experience the inevitable struggles that come, and we understand each other like no one else can. Who else understands what its like to long for the children left behind? Who else understands the desire to be able to tell her birth mother how amazing she is? Who else understands the love for your child and the pain when others don't share the same sentiment? Who else understands what its like to be on display everywhere you go? (And man oh man, were we on display this weekend! "Are you guys part of some sort of organization?")
We stay connected in many ways. Via phone, email, snail mail, blogs, FB, skype, chat groups, and now reunions. But regardless of how we stay connected, the fact remains. We ARE connected.
And not because of the things listed above. We are connected because our children are forever connected. There are so many questions that our children will ask one day. And there are few answers. The only people that will truly be able to understand and help Carrington when those difficult times come are the children who were a part of her life before I was.
That is why this weekend was so beautiful. It was inspiring on so many levels. I love hearing the stories of how God is leading. I enjoyed every second. I feel so rejuvenated and understood. I laughed and cried. I even screamed like a school girl when I first spotted Becky who I traveled to Rwanda with. But what truly made it so special was to see our kids together, to recognize the connection that they share and see how far they have come. And to recognize that God not only brought these children to us, but He brought ALL of us together to share this amazing journey.