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Category Archives: POTS
No good words.
Fridays are sort of sad around here for me. They mark the closing of our weekly window of opportunity to get help. Every Sunday I am filled with hope because it is almost Monday. What that means here at Casa Dorana is that it’s “business hours” for anyone who might be able to help Chloe. This has been a crappy week regardless. Full of frustration with not being at all “the business” for the Doctors who we are hoping can help. Doctors on vacation, or not returning calls, or just not knowing what to do.
Chloe is off her meds for a few days so that she can get a test done that is sensitive to the meds. She is not a big fan of this idea, and feels worse, but is bravely pushing through. She sleeps very badly and not very much.
( or enough!) She’s managing to get through her teleclasses, though a couple of times I have found her fallen over asleep on her books. 
Just trudging on and through. Maybe next week will be better.
There are some hopeful glimpses for next week–
*Trying a new med after she finishes this test on Monday
*Hearing back from a pediatric case manager — maybe getting her some home services and/or additional advocate energy.
I know that I am failing at proper thank you notes to the many people who have helped out with meals and other things. Please know that you are SO APPRECIATED! It helps so much, and is such a blessing. A million times THANK YOU.
Anyone with some GOOD WORDS? I’d be glad to hear them! Actually I am sitting in Chloe’s recliner ( the one she can’t manage to spend more than a few minutes in without feeling worse) and she is apparently doing her “internet anthropology work” Here is the statement that she just fired out of the bed-cave
“Mom, spell Apocalypse for me….OK, Do you know there is no “brainpop” video for POT syndrome OR the Apocalypse??? Oh, They will be HEARING from me!”
This is particularly funny because Jimmy’s late Grandfather was a big proponent of WRITING TO IMPORTANT PEOPLE in order to GET THINGS DONE. Jim inherited quite a few carbon copies of typewritten letters to various officials. This makes me think of him and those. How much easier it is to be heard nowadays with the internets. Never fear! Chloe’s on the case!
Perhaps I need to get her inspired to figure out a STINKBUG ERADICATION PLOY. Sick. of. them.
Hope you all have a nice false-spring weekend.
xo Dawn
These made me stop in the aisle and laugh out loud at Target
Fabiform Friday
Fabiform. Here meaning– shaped like a bean.
Welcome to bean shaped Friday.
Since I am so behind on my Wednesdays…sigh. Here are some photos of the past week.
Tomorrow, I am dyeing. a lot. It’s supposed to get a bit warmer these next few days, so I am firing up the kettles and hanging colors on the clothesline. You know what that means– Yarn, yarn , yarn is coming. The spring shows are coming. I’ll be at the “farm day” down at Upper Room Studios on the Eastern shore, and hopefully the Homespun Yarn Party and lastly the mighty Sheep and Wool fest. I’ll also be delivering a bundle of yarn-love to Lovely Yarns in Hampden as soon as I can get it there…
Chloe has had the worst week thus far of POTSY hell. Nothing good to report. The new med doesn’t seem to be helping her dizziness yet. Hoping for a better time of it soon. She is very happily exchanging art-letters with a few folks. Please leave a comment if you’d like to join in her art exchange-list.
More to follow. Hope you all have a great weekend!
Ghoulia Yelps is the coolest high school monster.
Was Jim happier WITH his beard??
He scoffs. You decide. I like all of his facial hair sculptures.
Virginia
Happy Ipod gets her through it.
We had a piggie spa day. Pumpkin in the pie.
Panson’s turn. He has a long-haired rocker coif.
doesn’t that little nose just kill you?
After his blow-out. He’s so awesome.
The girls– Daisy and Frida Kahlo got shampooed as well– eve though they tried to get us with their laser-beam-eyes.
Bob dropped by to visit Panson and munch on some hay. Pants tried to laser him as well, but Bob is speedy!
Lilzee munching on bagel and lox. She loves this way more than most human children
Lil, who is relentlessly farming for teeth. Oh the torment of a dangling tooth.
sad, sad Chlo. But happily Art-ing. Also note the Marylin Manson amigurmi doll she crocheted. Just wow.
The joy of facetime with far-away family
The joy of cyclamen
and the joy that is Bob-the-bird He was found as a bitty-baby out in the wild last summer, he is getting sweeter all the time (as opposed to the human-munching bird he has been until recently), and has even started talking! I think he was hoping to nest in Jim’s beard… alas and alack.
Posted in Home & Family, POTS, Wordless Wednesday
4 Comments
Tristifical Tuesday
Getting a bit behind. Going to cluster up an update with a photo feast here today.
The update.
It’s been a hard week or so. Chloe has been feeling really terrifically badly. We all drove down to VA on Friday for a Doc Abdallah meeting. Changed her beta blocker to a new one in hopes of taming her heart rate. All we’ve notice thus far is that she feels bloody horrible. 
Lily is tooth farming again. It’s a wonder she can speak at all now!
No other news really. The dirge remains the same.
Here are a few photos from the past week and a half.
More soon.
The week in visual review:
bird for dinner. again.
more scones. coconut raisin.
needle felting. a rare trip downstairs this week.
cupcake candle from erin. so nice.
ice cream therapy. in the bed cave.
Domos for Hannah.
fishes in the sushi shop. we ate shrimp maki.
bird for dinner. again.The wellaway week.
A week lost in the swirling vortex of life. Super UGH!
Last Friday’s trip to Reston was tough for Chloe. The tilt table test was really hard for her to get through, but she was brave and made it through.
Her POTS diagnosis was tweaked a bit. She is still classified as severe. She also now fits into the hyperadrenergic category. I have been trying to find something simple to provide as a link for that. But it is not simple. I think the most basic thing I can distill it to in my understanding is that in Hyper-POTS both your BP and your heart rate increase instead of the “regular flavor” where the BP drops and the rate increases. Additionally, there are some genetic distinctions that we’ll have to explore. We’ll be seeing a dr. for that in the coming months. In Chloe’s tilt table test, her heart rate jumped right to 174, and that’s pretty big for someone who had just been at rest. I imagine this has much to do with why she feels so bloody bad! Dr. Abdallah began her on 2 meds– Midodrine and Toprol. These replaced the others she was taking, but maybe not permanently. They seem to be helping with her BP numbers here at home, but she is still very symptomatic otherwise. You must forgive my lack of numbers and specifics in this post. I am still waiting on the report and I am a bit murky on the memory because here’s how the rest of that day went…
Come home and chase Midodrine all over town. This is a drug that was off the market for a bit and the specific brand we needed was scarce. Westminster is where we finally found it. Got a round in her and… STOMACH FLU!!
Yep, I WISH I was making this stuff up.
This is what the room looked like. The “theme” of the room was TIGERS. Lots of paintings of tigers. Comforting?
Then the whole table tilts slowly up to about 80 degrees.
The lighting was very low… but can you see how purple Chloe’s feet are here?
Ok, fast forward to now. Chloe was a bit harder hit by the stomach flu than the rest of the family, probably her starting point of POTS. She is just about back to where she was now. What is bad about that, is that I am not getting feedback from her that the new meds are making her feel much better. She is not distinguishing much difference in experience, though as I said, her BP numbers are better.
I am afraid this might be a longish road.
That’s all for tonight. Wordless Wednesday has been pushed to Friday. Frigiferous Friday ( which in this case means–bearing or bringing cold)
Do the snowball dance tonight.
Love,
Dawnamarie Snicket
Tilt a whirl
So today’s visit was a bit unusual. It took for-ev-er, which is not all that unusual. Probably.
Chloe’s BP/heart rate numbers were “striking” in the words of Dr. Abdallah. He described her as “Oh, VERY severe POTS” I could not get her results from them today before leaving, but she had at least a 50 point jump. So… She has a Holter monitor on to keep track of what her heart is actually doing in a 24 hour period and also we’ll be headed back on Friday morning for something called a tilt-table test. He said that for her, he would not even think of treatment before doing that test.
I hope that it really works out to be so, but the feeling upon meeting him is of finally being in the presence of someone who is taking a personal interest in Chloe and knows what to do. He is kind, and so very compassionate. So, we’ll see what Friday shows. We will have an appointment with him following the test and get a treatment plan at that time. Apparently “normal” POTS protocols don’t apply to her already because of her rates, She is “just different” he said… ( I just wanted to do the Mr. Fox wavy hand gesture). Well, we KNEW she was different. More to the story on Friday.
Home-school begins bright and early tomorrow– Poor Lil will be home for another day — fever and stomach bug.