Thursday, March 22, 2012

CHANGES: Living with Postural Orthostatic Tachycardia Syndrome

Three years ago the Dysautonomia Information Network made a POTS documentary.  I am excited to announce that the full video is now available on YouTube!

For those of you who may not know, POTS (Postural Orthostatic Tachycardia Syndrome) is one of the types of dysautonomia that I have. Symptoms and severity can vary from patient to patient, but this documentary will give you an idea of some of the challenges that those of us with POTS face. 




Enjoy the video!  If you are viewing this post in an email you will need to click over to watch.

For more information on POTS or dysautonomia, please visit www.dinet.org.  

Tuesday, March 6, 2012

Little Friends



Adelaide is my special little friend.  She is happy and affectionate, and she loves to be with me. She doesn’t understand yet that I am sick. I’m just her mommy, and she loves me.

Adelaide’s new favorite thing to do with me is come snuggle in bed.  She likes to talk to me about anything that comes to mind.  She likes my fuzzy blanket and soft mattress. She likes to snuggle down under the covers and pretend to take a nap with me.  She thinks it’s a game. Little does she know, I am in bed because I have to be. I sometimes play with her here because I don’t have the option of playing with her in the living room.

There are many times that I am too weak and tired to let Adelaide come into the bedroom to say hello to me while I am resting. When Will comes in to bring me food or to check on me, I hear Adelaide at the door, begging to come in. It breaks my heart when I hear her crying out, “Mommy!” I can tell by the sound of her voice that tears are pouring down her face. She just wants to be with me, and she doesn’t understand that I’m too sick to play.

It won’t be much longer, and she will start to understand.  I very clearly remember a conversation with William when he was 2 ½ years old.  I was stuck in bed, and Will brought William in to see me.  My son asked me, “Fell well, Mommy?” in a sad voice while shaking his head no.  (Translation: “Do you not feel well, Mommy?”)

I said, “No, I don’t feel well.”

William asked his daddy, “Feel well, Daddy?” in a happy voice while shaking his head yes. (Translation: “Do you feel well, Daddy?”)

Will said, “Yes, I feel well.”

I asked William how he felt, and he replied with a big smile, “I happy. So happy!”

William was young when he began to notice that I was sick and tired when no one else was.  He liked to snuggle me in bed and just be with me (and he still does, which makes me happy).

Now I also have Adelaide to come and be my little snuggle bug.  She likes to join me not only in my bed but also in my recliner.  Quite often now if I am resting in my recliner, Adelaide will climb up with me and just play on my lap.  I absolutely love having her with me.  I know it won’t be much longer and she’ll be too big and heavy to sit on my lap and play for half an hour, so I’m soaking it all up now!

My homebound days are made much easier by these precious children.  They provide endless entertainment, smiles, hugs, and kisses.  I thank the Lord for the blessing of these little friends.

Related Posts Plugin for WordPress, Blogger...