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Things I find help with POTS Symptoms
Reblogged from Irish Dysautonomia Awareness: I have discovered a few things that really help the symptoms of POTS and thought it would be good to share for others who may not know about them, they are simple but seem to help me a great deal and anything that helps has to be good!! #1: Firstly and [...]
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Hemiplegic horror?
I had a great day yesterday….except for the severe hemiplegic migraine attack. The aura of this kind of migraine mimics a stroke. Terrifying…and this one was horrible. Feeling a bit better now, thankfully. For several hours, about six or so, at a best guess, I was totally incapacitated. It is like being locked inside your [...]
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Bella Portrait finis?
I am doing portraits…people as well as pets. Let me know if you might be interested. Filed under: Art Journal, Strategies For Coping
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Painted
I am totally honored that Dulcé Menéndez painted my portrait…you can see it here on Flickr. Thank you, Didi…it is so awesome! I am used to painting other people, so being the subject of such a talented artist is just fabulous to me…so cool it is sub zero! UPDATE: The finished painting is now also on [...]
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Visual Snow
Visual Snow….read about this interesting and rare condition (yes, I have it). I just completed my interview with Dr. Schankin yesterday for the research study. I can’t discuss the actual interviewvirtu I can tell you it was very thorough and quite interesting. I am looking forward to the findings of the study. If you have [...]
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Flushing, not blushing?
I have had a terrible time with ‘blushing’ all my life…at least, that is what I believed it was for most of my life. It was embarrassing because people so often thought I was embarrassed when I was not embarrassed at all! It got worse as I got older, finally getting so bad that it [...]
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Dysautonomia Information for Loved Ones
This is a great article to share with family and friends to help them understand what it is like to live with Dysautonomia HELPING YOUR LOVED ONES UNDERSTAND DYSAUTONOMIA What is Dysautonomia/POTS: Dysautonomia is a malfunctioning of the Autonomic Nervous System, or the unconscious bodily functions – your heart rate, digestion, breathing, blood pressure, digestion, [...]
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Coming up for air?
Okay, calling all POTSies and Zebras out there…this post is a sort of plea for opinions and advice. First, you might want to peek at my last post and listen to the BlipMe link (recording of my voice so you can hear how raspy and hoarse my voice gets). I am not sure what to [...]
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Losing my voice?
I have this recurring problem with losing my voice. It has been happening for a good decade or so, getting worse in recent years. Typically, it will happen with exertion, in the afternoon and evening, and when I speak often. Mostly, it is just obnoxious, I suppose. I also have difficulty swallowing and have worsening [...]
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Realizations
This is how I roll…I am cleaning my weapons, readying my survival gear…putting on my best Sarah Connor attitude…so don’t look for self pity in this daunting read. This is war. I am struggling pretty hard at the moment, and I’ve been bashed over the head with some daunting realizations. This is it. It is [...]
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Bella
As you probably know by now, painting is a huge part of my therapy and art is my only means of income these days. I’ve been doing portrait art again, as I once did in the French Quarter at Jackson Square, in New Orleans just about twenty years ago. This painting, still in progress, is [...]
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It Takes a Herd to Take a Breath
Rachel Phillips was a ballet dancer who performed with the Royal Ballet in London, the Kirov in St. Petersburg, Russia and other major companies in the US and abroad. Her world came to an abrupt halt when she began to have complications from a rare connective tissue disorder. With her airways now over 90% collapsed, [...]
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EDS Help Rachel Breathe Pendant at Zazzle.ca
EDS Help Rachel Breathe Pendant at Zazzle.ca. PLEASE HELP RACHEL BREATHE! You can help save her life by ordering this pendant like I just did…and pass the word! Every dime is critical at this point to save this amazing woman’s life…to learn more about my friend and her life threatening battle, please visit www.helpRachelbreathe.com Filed [...]
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The Daily Snark
These are the bits that get me through a day…here are a few snarky posts I thought I’d share here (I originally posted them on facebook): List of a$$e$ I’d love to kick: Newton and his stupid apple; the bald kid who ran off with all of my special bendy spoons; the dude who told [...]
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Rotten
Thought maybe I was feeling a tiny bit better yesterday, but turns put it was just a tease. So glad I have a doc appt tomorrow. This crap on top of POTS is horrible. I can’t take most cold remedies and this makes me so much more likely to pass out…and the POTS symptoms are [...]
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Learn how to read an MRI
This is a fabulous site, both for learning to read an MRI and also for the anatomy (rather difficult to do one without the other, right?) of the spine. Chirogeek web site - Posted using BlogPress from my iPad Filed under: Disorders of the Spine, Research, Tips & Tricks
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Sketchy
My latest sketch…did this tonight for Didi’s portrait project… And below you can see it with the photo. I did this by hand on iPad 2 in the ArtRage app with BoxWave stylus. Filed under: Art Journal, Strategies For Coping
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Hyper POTS?
Thanks to some help from a friend, who ran my readings through a statistical routine, he thought it looks like I am more likely hyper pots than combo. I will have to have my norepi levels checked to confirm, but he thought that, statistically, my vitals behave like hyper pots. In my case, I think [...]
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Excellent video
This video is fabulous…gives a tremendous amount of information on EDS, Chiari and comorbid conditions. I have to give myself a sahhhNAP for making the EDS/Autism leap…toward the end, that is actually addressed! I had such a strong belief that all my primary schtuff is interrelated. To the left is a screenshot of one of the [...]
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Day Zero
I have no additional Toprol news. The mystery flu struck the day after I tried my first dose, and there is no way I am messing with meds again until I get rid of this bug. I can barely eat as it is, let alone try the roller coaster vitals thing. Pass (hopefully not OUT). [...]
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Root Cause
I rather like my label, and that is not something that anyone who knows me AT ALL would expect me to say. After all, I am a rebel. I avoid sameness like the plague. I have no wish to be confused with normal or average. I avoid trends. I generally dislike the whole idea of [...]
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Dysautonomic Athletes and a Theory
There has been some interesting discussion in one of my Facebook support groups about reconditioning as related to POTS, and theories on why so many athletes or highly athletic people seem to fall prey to this debilitating disease. I was active and athletic before and after I became acute. Born with EDS and Dysautonomia, my [...]
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Day One
I promised my doc I would try this Toprol (beta blocker) for my tachycardia (POTS). Nervously, I just took my first pill. I hope this helps…and I hope there are no side effects. New meds scare me because I am so sensitive to a lot of things. A simple anti-inflammatory called Meloxicam screwed me up [...]
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REVERSE-NAMASKAR: A NEW SIGN IN EHLERS-DANLOS SYNDROME: A FAMILY PEDIGREE STUDY OF FOUR GENERATIONS
REVERSE-NAMASKAR: A NEW SIGN IN EHLERS-DANLOS SYNDROME: A FAMILY PEDIGREE STUDY OF FOUR GENERATIONS. Filed under: EDS, Genetic, Research Tagged: EDS, hypermobility, namaskar, reverse
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The Great Tradeoff
Oh Gods of Invisible Illnesses, why couldn’t you have cursed me with just ONE damned incurable debilitating thing? Really, my cup runneth over with comorbidity. Your generosity is really above and beyond…I’d like to return all but one. NO? WTF do you mean, NO? Crappola. Today is a Hemiplegic Migraine (HM) day. These sneaky little [...]
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Hannah?s Dysautonomic Life: Invisibile Illness Awareness Week- Faces of Dysautonomia
Hannah’s Dysautonomic Life: Invisibile Illness Awareness Week- Faces of Dysautonomia. This is a wonderful project for awareness! Thank you, Hannah, for putting this together Filed under: Advocacy & Awareness, Dysautonomia
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POTSgrrl: What I wish someone told me the day I was diagnosed with POTS?
POTSgrrl: What I wish someone told me the day I was diagnosed with POTS…. Excellent piece! I have combo POTS and NCS, as well as EDSIII (which seems to be my underlying cause). The research is really, really important. So is the support. Really, everything she mentions is very important. I am partially bedridden. I [...]
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Tilt this?
I was looking for this article so I could post this passage… Excerpt about standing test vs tilt table for testing of POTS: “Some authors advocate the use head-up tilt table testing as a standardized method to assess an individual’s response to a change in posture [1]. The patient is positioned on a standard tilt [...]
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The Lottery
Epiphany of the day: Having a rare and incurable condition is very much like winning the lottery, but in reverse of sorts. It comes with this sense of unreality….who, ME??? Seriously? You still feel like this ordinary person, even though you know better. You are an exception, but not for any of the reasons you [...]
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Earning my stripes?part 2
Looooong day. Went to rheumy. I am official…zebra type three Believe it or not, the rheumy actually has POTS! I also got an rx to try torpol, an order for ring splints, and an order for thoracic and cervical MRIs. Oh, and a hand xray. She was pretty upset about how dissabled I am because [...]
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Dysautonomia
Dysautonomia. This is an excellent site…also offers insight into mitochondrial issues. I have some concerns about the latter because of blood work results (low neutrophil, high lymphocyte count) and comorbidity, symptoms, etc. I am hoping the rheumatologist can help with this next week, even if only to refer me to the right place and maybe [...]
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Night Swim
Well, I did it, with Corey’s help. He brought me a slice of watermelon, and for some reason, that helped me just enough to get out to the pool. He even cooked dinner and brought it out to the patio, and we sat and ate by (solar) tikki light. I swam some more. Felt pretty [...]
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This is how I roll?
I did this little number a few days ago, but have been too sick to blog it until now. It’s simply a demonstration with my fingertip pulse/ox monitor, showing how my heart rate responds to different positions. This is what you can’t SEE when I am standing in a checkout line, or beside you chatting [...]
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Enter the Funhouse
I am considering changing the title of this blog to Life in the Funhouse. Tilted walls. Sliding floors. Beds nailed to moving walls. Halls of mirrors. Slippery goop underfoot. Strobe lights. Whoooooosh. Darkness. POTS. It sucks. I’ve had no relief for several days now. Spent all my time curled on my side, trying my best [...]
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Lady of Leisure
Ah, yes…I am the envy of so many…even Riley is jade green. “I wish I could just stay at home.” Those are the words I hear (or see) very often, and they barely conceal the usual barb of envy beneath. Sometimes, I can even pick it out of people’s brains. There’s a tell. Oh, the [...]
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Ehlers-Danlos Syndrome, Classic Type ? GeneReviews ? NCBI Bookshelf
Ehlers-Danlos Syndrome, Classic Type – GeneReviews – NCBI Bookshelf. Filed under: Autonomic Function, Childhood, Dysautonomia, EDS, Genetic, POTS, Research
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Banging spoons on pots & earning my stripes?
Lemme tell ya, every joint in my hands is popping and hurting…ugh. Yes, I am whining, and I WOULD like some extra sharp cheddar with that. Shaved thin, please. In addition, my shoulder keeps sticking, my right hip is snapping, my knee is grinding (both, but so much worse on the right). I am CRAVING [...]
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Salt This (again)
The Rock Farm Oasis has come a long way. It all started with a replacement pool (I had a really cheap one that lasted several seasons, but last summer, it was pretty ghetto–held together with tape and styrofoam noodles). Nothing too fancy or expensive, but a distinct upgrade from my MacGuyverized Ghetto Pond, which is [...]
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Kristin Means on EDS
It was very emotional for me, watching this…listening to her story. There is an extremely high probability that I have EDS (seeing Rheumatologist in September about dx). When she was describing things to look for in kids…right down to the trouble holding a pencil and writing (I was diagnosed with dysgraphia and have to wonder [...]
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Remiss
I’ve been remiss in posting lately. Here are my excuses: 1. My eldest son just returned from deployment in Afghanistan, and we made a journey that lasted a few days to Camp Lejeune to meet him as soon as he got off that white bus. Awesomeness followed by much needed recovery. 2. My patio and [...]
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Salt This
The rest of the concrete was poured on Tuesday, and today, I salted my freshly filled pool with 175 POUNDS of good ‘ol sodium chloride. Sort of felt funny, all that salt in there before it dissolved. A surreal ocean! I cheated and swam, too, whilst dissolving. It was glorious. Even the arthritis in my [...]
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So I DON?T look sick? Wow. You don?t look like?
So I DON’T look sick? Wow. You don’t look like such an idiot (Reverse: Invisible Disability Awareness) Filed under: Advocacy & Awareness, Rants & Raves, Sarcasm & Being Snarky
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ooops?was that my out loud voice?
ooops…was that my out loud voice? Wear it. Live it. Filed under: Rants & Raves, Sarcasm & Being Snarky
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Dysautonomia Newsletter
Dysautonomia Newsleter: DOWNLOAD Filed under: Autonomic Function, CFS/ME, Disorders of the Spine, Dysautonomia, EDS, Genetic, POTS, Research, Syncope
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Epic Fail
I mean to tell you, I really HATE this stupid POTS right now. I’m miffed on so many levels. Let me back up. We had made an appointment at the vet’s office for The Boo and the baby kitties. That was set for 2:30. So I figured I could go out for an hour or [...]
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Holy ribcage, Towman!
I cannot believe how skinny I have gotten. Without trying. My ribs and spine show. My hands and feet have that ropey look where the blue veins stand out like a relief map of otherworldly rivers. I k ow part of it is that I can’t eat much at once, and I get Dysautonomic nausea [...]
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Outstanding morning, but?
I had such a wonderful morning for a POTsy. Woke up to find the antique custom wrought iron railings my grandmother had made for her mother in New Orleans installed! The forms were almost finished for the upper patio and terraced walk. I was really excited! Even felt good enough to take Cor to the [...]
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Books & Their Covers
…and this is all I have to say about that. Filed under: Advocacy & Awareness, Art & Creativity, Art Journal, Arthritis, Autonomic Function, CFS/ME, Disorders of the Spine, Dysautonomia, EDS, Genetic, Migraine and Headaches, POTS, POTsy POSSE, Rants & Raves, Sarcasm & Being Snarky, Strategies For Coping, Syncope, The Rollercoaster
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Red Arrows and Attitude
Joe Pike may only be a character in a series of novels (by Robert Crais), but I have to say that I think of him often. His character resonates with me in several ways, but today, I am here with my sadly neglected blog to tell you about the red arrows tattooed on his deltoids. [...]
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My Art on Etsy
Shae Leighland-Pence (shaeleigh) on Etsy. Filed under: Advocacy & Awareness, Art & Creativity, Art Journal, Autonomic Function, Dysautonomia, POTS, Rants & Raves, Strategies For Coping, Syncope
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Morning Claw: The Movie
The official claw trailer… Here are some still shots of the painful waking moments… Filed under: Arthritis, EDS, Genetic, video Tagged: video
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Dermatomes
Found some more good dermatome charts…these are wonderful resources to have. I keep them on my iPhone and iPad. Click image to download hi-res version. Filed under: Disorders of the Spine, Tips & Tricks Tagged: dermatomes, nerve damage, nerves, radiculopathy, somatosensory, spine
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Up Down Up Down?
No wonder I am dizzy, right? I’ve been having a lot of dizziness and vertigo lately. It’s been a mix of decent days (or parts thereof) and crappy times. How do you say something…gross….without saying something gross? Another conundrum. We’ll go with this: my tummy and related parts have not been operating as intended, and [...]
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Military Chow Time!
Dear friends, fam, POTSy Posse, and faithful blog skimmers…I’d like to recommend this cookbook, put together by Marine Moms. In it are some recipes of mine dedicated to my Marine, my oldest son Jesse. I hope you’ll consider ordering one. It’s a cool cookbook, for a sweet cause! Here it is your chance to PRE-ORDER [...]
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Damian?s Cause
PLEASE consider making a donation for my friend’s medical cause for special treatment for a kind of muscular dystrophy called Spinal Muscular Atrophy. Every little bit helps. And pass it along if you would. Damian is such an inspirational, cool person…he deserves this chance so much. Read his story at DamianMartaFundraiser.com and consider making a [...]
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More Dermatomes
Filed under: Disorders of the Spine Tagged: radiculopathy
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Hyperadrenergenic POTS
Another POTSy in my support group maintains an awesomely informative web site on ‘Hyper POTS’ (Hyperadrenergenic POTS). Give this link a click for an overview of Hyper POTS. She also has several good brochures you can download (for patients, for physicians, and for family & friends). Another page I really like there is the one [...]
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Got it all in one sack?for now
Okay, I finally did it. I made an appointment with the Rheumatologist. I am not exactly sure why I have been procrastinating about this. I mean, I kind of have a pretty good idea what to expect, really. The only thing I can figure is that somewhere in this foggy brain, I just haven’t wanted [...]
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Dys Girl!
Okay, potsy peeps…I have gotten myself a personal domain for this site. Short and sweet. Remember the show ‘That Girl’? Well, I am ‘Dys Girl’! Now you can get here via www.DysGirl.com! Filed under: Dysautonomia
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PrettyIll.com Video: POTS and Dysautonomia
PrettyIll.com is a site for resources, advice, and camaraderie involving connective tissue disorders. Dr. Diana, both a doctor and a patient, offers help and hope for Multiple Sclerosis, Ehlers-Danlos Syndrome, POTS, CCSVI research, chronic fatigue and fibromyalgia. This video is a great basic explanation of what the symptoms are like, and also how you can [...]
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The scent of Rosemary
I find gardening very therapeutic. When your body is busy betraying you, there is something empowering about nurturing a living thing, watching it grow, being an integral part of that process. It is soothing, and somehow makes me feel hopeful that I can do some of the same for myself. Rosemary is my passion. I [...]
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Two poems for my grandmother
Two poems dedicated to my grandmother from my book, The Weight of Dust (writing as C.E. Laine)… Filed under: Art & Creativity Tagged: Family, memories, Poems
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A touch of normalcy
Yesterday, Corey and I went out to eat and got brownie batter blizzards…big day for me! I even got to wear my new halter top (which was way comfy). Today, my son and I built a huge planter box…raised bed…12 feet long. It felt good to do a project with my hands like that again, [...]
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Hard Core
One thing I’ve realized (again, but in a different way) is that I don’t have to prove how hard core I am. I know what I need to know, and have for a long time. Disability threw me for a loop, I admit, but I’ve learned that to thrive with disabilities, you have to be [...]
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Catch 527
You know what? Disabilities suck; some more than others, but they all suck in some fashion. I am not here writing this to say ‘mine is worse than yours’ or to compare. In my personal estimation, we are all entitled to our personal pain, whatever it is, and that is something that should never be [...]
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In Honor of Those Who Have Served
This is a collage I did of several of my family members (including my husband’s father and Opa) in honor of their service. My son is a Marine serving in Afghanistan right now. I was unable to include everyone…I have many cousins and great uncles, etc.., who also served. This is for them, as well. [...]
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Bright, Sunshiny Day
Today was a pretty decent day for me. Got up very late, which is not unusual. I seem to get my best sleep in the mornings and often get up sometime between 10:30 and 3:30. Today was closer to the latter, I admit. I didn’t let the late hour become an excuse not to take [...]
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POTS Treatments
Special thanks to Brandy Hilt Craig for the awesome POTS awareness artwork on this page. Here is an informative article on all sorts of treatments for POTS. It describes a wide range of drug treatments, along with pros and cons and how it works in the body. There are also details on non-prescription treatments such [...]
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POTS: Pathophysiology, Diagnosis & Management
This article was posted in Living With Pots, a wonderful support group mainly aimed at research study (by we, the potsy patients, as we scour the internet for the latest and greatest information connected in any way to POTS and/or its commonly correlating conditions). I had seen this a while ago, but have learned a [...]
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Sea how it goes?
My doctor’s appointment yesterday went well. It was mostly routine, but we upped my dosage of Cymbalta (which, for those of you coming across this without earlier knowledge, I take primarily for pain). My insurance won’t cover the increased dosage, so my doc was super cool and gave me enough samples to cover the difference. [...]
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Do I hold the new record???
I learned something new today: Orthostatic narrowing of the pulse pressure. The pulse pressure is the difference between the lower number of the BP from the higher number. For example, a normal person with a BP of 100/60 would have a pulse pressure of 40. It is actually the difference between the upper and lower [...]
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Saline IV on the rocks, please.
Donating plasma in my early 20′s actually used to make me feel better…because they really juice you up on saline IV fluids. I was very impoverished for a time and would donate plasma every 72 hours for extra money to eat…did this for a couple of months. What they do is hook you up to [...]
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Booty Call
So I took the new boots out for a test run (ok, walk) today. It was a warm, sunny day, warm enough to find out if it would be way too hot wearing them. Not bad, in that regard. Huge help being able to wear my compression knee highs without looking like some sort of [...]
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Madderall
I find that I totally cannot function when I don’t take my Adderall XR. It really helps my fatigue issues and POTS symptoms. Without it, I have a hard time leaving bed at all. I absolutely hate that I have to depend on something like that, and it is frustrating that my doc is an [...]
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Compression Fashionista
We potsies are all too familiar with ungainly compression stockings. I’ve had some concerns about the hot weather; although I don’t put a great deal of stock in the opinions of rare passers-by, I have nonetheless found a means of converting my need for at least a knee high compression stocking for any long outing [...]
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The Aftermath
Things actually went pretty well. The anesthesiologist and her nurse both worked a potsy case together a week before mine, so they had a clue. I told them the deal about monitoring my heart rate and bp and my fluids closely. They were even kind enough to switch my plain IV our for saline. My [...]
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Pre-dawn blurb
Just up for a bit. Well, up is not accurate. I am supine in the dark with my iPad and a pile of snoring cats, listening to the last remnants of rainfall on the tin roof. Damp birds are singing, probably trying to coax the Sun’s rays over the mountains to warm their feathers dry. [...]
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Brrrrrr!
I spent all afternoon on this chilly, rainy day setting up a new network with the airport extreme. In days of yore, it would have taken me no time to do this. I am a web designer…I can code…I ‘get’ computer stuff, and am a certified geek. Brain fog and networking, however, do NOT mix. [...]
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Own it?
Once again, I must share an exquisite post over at Living with Bob…Copyright. This is something I related to in the extreme. No wonder I keep finding red glitter in the dusty corners of my brain. Go read the post. Filed under: Autonomic Function, Dysautonomia, POTS, Rants & Raves, Sarcasm & Being Snarky, Strategies For [...]
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The Big Chill
Maybe this sounds (is???) totally nuts, but I find that when I get up for my meds and such, which are accompanied by a cool or cold drink (water or tea, most often), I cannot warm up. I get so cold, I can feel goosebumps on the front of my legs. Usually, my problem is [...]
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The Bi-Weekly Graph
I haven’t been posting as much lately. Things have been busy for me, and I have been focused on art stuff a lot. Once I got done with the ‘necessary’ things (or not done with them), I just totally lacked the oomph to write posts, or even deal with email and facebook much. I have [...]
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Cranes in Sunset Card
Cranes in Sunset Card from Zazzle.com. Two cranes in the sunset. I paint for therapy and to keep my mind off of my disabilities. I usually paint flat on my back. Technology has allowed me to get back to my artsy self, despite severe disabilities. I will be selling a variety of limited edition signed [...]
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Abstract Observation?
I’ve read dozens of articles and research papers, many of which are linked here, and I’ve noticed something a bit unnerving; the upper range of the subjects’ heart rate readings are only in the 140-150 bpm range most of the time. That’s a pretty GOOD day for me. An excellent day is one that doesn’t [...]
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Postural orthostatic tachycardia syndrome is an under-recognized condition in chronic fatigue syndrome
Postural orthostatic tachycardia syndrome is an under-recognized condition in chronic fatigue syndrome (Thanks to Dysautonomia Prison for sharing this article!) Abstract Background: It has been suggested that postural orthostatic tachycardia syndrome (POTS) be considered in the differential diagnosis of those with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Currently, measurement of haemodynamic response to standing is not [...]
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Postural Orthostatic Tachycardia Syndrome: The Mayo Clinic Experience
Postural Orthostatic Tachycardia Syndrome: The Mayo Clinic Experience OBJECTIVE: To evaluate the prevalence and pathogenetic mechanisms of postural orthostatic tachycardia syndrome (POTS). PATIENTS AND METHODS: We reviewed the medical records of patients with POTS seen at the Mayo Clinic in Rochester, Minn, from January 1, 1993, through December 31, 2003. All patients were required to [...]
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Terribly Mangled Jawbone
TMJ can’t even suck, because to suck, one has to be able to close one’s mouth all the effing way. I suspect the extra caffeine that has been helping my Dysautonomia is aggravating my TMJ. It has been getting steadily worse over the past week, and today, the jaw is whacked out of line. Sigh. [...]
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?Loose Joints? Highly Associated with Migraine
Interesting article…seems that hypermobility is related to a majority of my issues. ‘Loose Joints’ Highly Associated with Migraine [Note: Other research indicates hypermobile joints and migraine are also highly associated with ?chronic fatigue syndrome? (ME/CFS) and fibromyalgia, and other problems frequent in both.*] Most people see ?double-jointedness? as a common, harmless condition. But in people [...]
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Three guys, a big drill and a satellite dish
So the DirecTV guys are here doing an installation with whole home DVR. Can you believe we’ve had this house over five years, and this is the first time we will have ‘real’ tv of any sort, other than streaming online and videos? I have spent a LOT of time stuck in bed without this [...]
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Cranes Finis!
I had a bit of a rough day with tachycardia, spine pain and a headache, but I finished my painting! Not only did I finish it, I over clocked my pain pill time by like three hours! That is quite excellent. I love it when I am able to become so absorbed that I can [...]
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This is so tachy!
Yes, I can spell, thanks….I am referring to tachycardia, which I am entirely SICK of. I had about a week’s worth of ‘vacation’ from the high numbers, but they are creeping back up, and I am not feeling as well. I’ve even had several ‘swoons’ in the past two days, and it’s been a while [...]
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Mission TexMex: Aborted
Well, I was going to go out for TexMex with my husband and a friend. Even got ready, had on my cute embroidered skinny chick jeans…then POTS clunked me over the head with a whopping case of nausea and tachycardia. All I could do was lie on the bed. With the chills. I think I [...]
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Step Out
My sister is walking in Step Out 2011 in memory of her best friend’s mom. Please join me in supporting her efforts in the fight against diabetes by making a small donation to her team. Every little bit really helps! Also, if you could spread the word, we would really appreciate that :~) Filed under: [...]
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Rescuing the Rescuer
My husband actually did the hard work, but we have salvaged a ’43 firetruck from the doom of the scrap heap. Yesterday I was feeling well enough to go on an afternoon ‘date’ in the snatch truck with my trusty iPhone (currently my only camera) for a shutterbug expedition to visit our new acquisition. Yes, we [...]
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Instagram Shutterbugging
These days, it’s pretty rare that I get to do much shutterbugging, so I was thrilled yesterday to get the chance! We went out to look at the ’43 firetruck we rescued from scrap. Lots of opportunity for some of the detail shots I love to take. I also played around with the Instagram app…here [...]
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Stretch this!
I am SOOOOO jazzed! My Roufus Hummingbird canvas arrived today! So awesome to hold it in my hands, and see my digital painting come to life on actual canvas over wood stretchers! It really turned out pretty awesome! I would not have even picked up the Nomad Brush if it had not been for my [...]
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The Weekly Graph
My numbers have been distinctly better since I went on the caffeine kick (as in taking a lot more of it). I have been able to function and cope better and for longer periods. It still isn’t exactly what you’d call perfect, but it sure beats the last bad POTS flare up I had. The [...]
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Endometriosis Petition
I am sharing this on behalf of friend, and all the women who must deal with this. PLEASE take a moment out of your day to sign the petition. Awareness really is crucial! We’re past 800 signatures & rising! SIGN & SHARE: Endometriosis is “more common than AIDS and more common than cancer”, per Ohio [...]
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Orthostatic hypotension in autonomic failure?
This link was shared by Disautonomia Prison…very interesting article. Click the title to get the full article. Abstract is below. Pathophysiological basis of orthostatic hypotension in autonomic failure Adrianus A J Smit*, John R Halliwill?, Phillip A Low? and Wouter Wieling* Abstract In patients with autonomic failure orthostatic hypotension results from an impaired capacity to increase vascular resistance [...]
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Kickin? it!
I have been doing pretty darn well today! Yeah, I had at least one spike of nearly 50 bpm, but didn’t measure much, either, because I feel pretty decent for a change. A bit tired, but also sort of jazzed. Things are all fresh. Like my ‘twin’ says, this time of year is the real [...]
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Suh-WEEEET!
So life decided to make it up to me for the extra hardship today. Had to pull a bunch of clothes out to find something nice to wear to closing…nice but able to survive a loooong ride in a potentially greasy and bouncy tow truck. Nothing dry clean only, for example. And it is a [...]
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