I have to say that my hands seem to be my biggest visual shock from POTS. When I'm having a bad POTSy day I'm constantly taking a second look. They're quite shocking at times. I often think I'm looking at the hands of the living dead, black, blue and mottled. It may be the start of some mutant zombie transformation. In sharp contrast to my lily white legs they surely can't belong to me! My hands would look better on Sally in the movie Nightmare Before Christmas than they do on me. In fact I think her hands would make a more attractive match on me! I'm beginning to fear bedtime lest my hands detach themselves and strangle me in my sleep. Or maybe they'll crawl under my bed and attack my ankles during my nightly run to the ladies room. And the pain, it feels like I've stuck my hands in the icy snow for several minutes. I can hear Smeagol (Gollum from the Lord of the Rings) whispering "they bites us and pricks us my precious".
Hmmm.... wondering what tomorrow will bring! Rainbows would be a nice oddity. I think rainbow ears would be fun! If I place my order in advance maybe I'll get a choice of the next mutant POTSy malady. POTS does make for some interesting writing topics.
Inspired,
Michele
Proverbs 10:4
Poor is he who works with a negligent hand, but the hand of the diligent makes rich.
Tuesday, May 31, 2011
Monday, May 30, 2011
POTSy Monopoly
Having POTS is like playing a game of Monopoly, acquiring the rare Boardwalk card would be compared to a symptom free week and drawing the Mediterranean card is like landing in the hospital with some symptom of POTS gone terribly wrong. The pale face players are familiar, they're my POTSy FaceBook friends. Each roll of the dice sends dread to the roller and all those playing. Will it be a good week or bad?
Having POTS and being involved in several support groups on Facebook has connected me with many awesome woman who I've grown to care very deeply for. We share our ups and downs, we share what's working for us and cover one another in prayer when needed. But I have to admit it is difficult at times to watch the lives of these woman go from good months of travel, work and "almost normal" activity to a POTSy crash that lands them in the hospital many times worse than they started. Having POTS is like rolling a dice and not knowing if this is the day that "almost normal" will take a devastating turn to kidney failure, pacemakers or feeding tubes. I worry for my friends, but in the back of my head I'm asking "when will this be me?" There are times when my friends completely disappear off Facebook, and I wonder are they feeling better and enjoying life with no need to check Facebook or are they too sick to post.
I sometimes ask myself if it might be better to quit Facebook so I wouldn't be so affected by how my friends are doing, but then what would I do? Read a book or watch braindead TV? Hummm that's uplifting. These support groups give me the opportunity to uplift others, pray and share my experiences as well as get my questions answered and be uplifted and prayed for when I'm in need. I know worrying about what hasn't happened yet isn't smart and a waste of time and energy. I need to focus on today. Today I have mild to moderate POTS symptoms, my meds work better for me than most and I'm able to work. Today I can uplift others, share and pray.
Some day I'll be able to burn that Obnoxious POTSy Monopoly board, throwing each card labeled with an obnoxious symptom into the roaring flames while doing the happy dance around the flames.
Inspired,
Michele
Matthew 6:34
Do not be anxious for tomorrow for tomorrow will care for itself. Each day has enough trouble of it's own.
Having POTS and being involved in several support groups on Facebook has connected me with many awesome woman who I've grown to care very deeply for. We share our ups and downs, we share what's working for us and cover one another in prayer when needed. But I have to admit it is difficult at times to watch the lives of these woman go from good months of travel, work and "almost normal" activity to a POTSy crash that lands them in the hospital many times worse than they started. Having POTS is like rolling a dice and not knowing if this is the day that "almost normal" will take a devastating turn to kidney failure, pacemakers or feeding tubes. I worry for my friends, but in the back of my head I'm asking "when will this be me?" There are times when my friends completely disappear off Facebook, and I wonder are they feeling better and enjoying life with no need to check Facebook or are they too sick to post.
I sometimes ask myself if it might be better to quit Facebook so I wouldn't be so affected by how my friends are doing, but then what would I do? Read a book or watch braindead TV? Hummm that's uplifting. These support groups give me the opportunity to uplift others, pray and share my experiences as well as get my questions answered and be uplifted and prayed for when I'm in need. I know worrying about what hasn't happened yet isn't smart and a waste of time and energy. I need to focus on today. Today I have mild to moderate POTS symptoms, my meds work better for me than most and I'm able to work. Today I can uplift others, share and pray.
Some day I'll be able to burn that Obnoxious POTSy Monopoly board, throwing each card labeled with an obnoxious symptom into the roaring flames while doing the happy dance around the flames.
Inspired,
Michele
Matthew 6:34
Do not be anxious for tomorrow for tomorrow will care for itself. Each day has enough trouble of it's own.
Wednesday, May 25, 2011
Article For a Friend
My friend Trace has a genetic form of dysautonomia and did some research on a new experimental drug. Posted it for those who want to check it out.
Article
And here's more info
Chelsea Therapeutics Announces Northera Poster Presentations and Symposium on Neurogenic Orthostatic Hypotension at MDS 15th International Congress of Parkinson's Disease and Movement DisordersMon May 2, 2011 7:30 am | about: CHTP Font Size: PrintEmail Recommend 0 Share this page
Share9 NEWS PROVIDED BY:
GlobeNewswire
Dr. Robert Hauser to Present Late Breaking Poster Highlighting Efficacy of Northera in Patients with Neurogenic Orthostatic Hypotension associated with Parkinson's Disease on June 8th 2011
Dr. Gregor Wenning to Present Poster on Safety and Efficacy of Northera in Multiple System Atrophy on June 8th 2011
Chelsea to Sponsor Symposium Reviewing Results from Northera Clinical Program in Neurogenic Orthostatic Hypotension on June 9th 2011
CHARLOTTE, N.C., May 2, 2011 (GLOBE NEWSWIRE) -- Chelsea Therapeutics International, Ltd. (Nasdaq:CHTP) announced that two posters describing the clinical benefit of NORTHERA" (droxidopa) have been accepted for presentation at the Movement Disorder Society's 15th International Congress of Parkinson's Disease and Movement Disorders June 5-9, 2011 at The Metro Toronto Convention Centre, Toronto, Ontario, Canada. In addition to the two posters presentations, Chelsea will sponsor a symposium detailing the clinical results of Northera for the treatment of neurogenic orthostatic hypotension (NOH) at 12:00 pm on June 9, 2011.
The following poster detailing results from Northera Study 306A has been accepted as a late breaking submission and will be presented by the study's principal investigator, Dr. Robert A. Hauser, on June 8, 2011 from 1:30 pm 3:00 pm ET:
"Efficacy of Northera (droxidopa) in Patients with Neurogenic Orthostatic Hypotension associated with Parkinson's disease (PD)," Robert A. Hauser (1) MD, Ramon Gil (2) MD and Stuart Isaacson (3) MD. Tampa (1), Port Charlotte (2), Boca Raton (3) Florida, USA. Abstract Number: LB21
In addition, the following poster will be presented during Poster Session III, June 8, 2011, from 9:00 am - 6:00 pm ET:
"Safety and efficacy of Northera (droxidopa) in Multiple System Atrophy," Gregor K Wenning, MD, PhD MSc1, Horacio Kaufmann, MD2, Christopher J Mathias, D.Phil, DSc, F.R.C.P3 and Pietro Cortelli, MD4. 1 Division of Clinical Neurobiology, Innsbruck Medical University; 2 NYU Medical Center; 3 Division of NeuroScience and Psychological Medicine, Imperial College of Science, Technology, and Medicine at St Mary's London and 4 Department of Neurosciences, University of Bologna. Abstract Number: 778
Chelsea will also be sponsoring a symposium, featuring a panel of academic thought leaders and experts in the field of movement disorders, to review the role of norepinephrine in primary autonomic failure, clinical findings and therapeutic opportunities for Northera in neurogenic orthostatic hypotension. The session being held on Thursday, June 9, 2011 at 12:00 pm ET will be moderated by Joseph Jankovic, MD, Baylor College of Medicine, Houston, TX, and will include the following presentations:
The Role of Norepinephrine in Primary Autonomic Failure associated with PD, MSA and PAF
Peter LeWitt, Southfield, MI, USA
Focus on NOH and Autonomic Failure in PD
Northera (droxidopa) Phase III Clinical Data
Gregor Wenning, Innsbruck, Austria
Clinical Trial Considerations for Neurogenic Orthostatic Hypotension (NOH)
Study 301 Results
Orthostatic Hypotension Questionnaire (OHQ)
Symptoms; Activities of Daily Living
Preliminary patient falls data
Northera (droxidopa) 306A Clinical Data
Robert Hauser, Tampa, FL, USA
OHQ and Falls
Movement Disorder Society Unified Parkinson's disease Rating Scale (MDS-UPDRS) scores
Hoehn & Yahr scores
Prospective study in 306B
About Neurogenic Orthostatic Hypotension
NOH is a neurogenic disorder resulting from deficient release of norepinephrine, the neurotransmitter used by sympathetic autonomic nerves to send signals to the blood vessels and the heart to regulate blood pressure. This deficiency results in lightheadedness, dizziness, blurred vision and fainting episodes when a person assumes a standing position. Symptoms of chronic NOH can be incapacitating, not only putting patients at high risk for falls and associated injuries, but also severely affecting the quality of life of patients and their loved ones. The only FDA-approved treatment for orthostatic hypotension has a black box warning indicating that the drug has not been shown to be effective in alleviating the symptoms of the condition and is associated with a pronounced side-effect profile including significant supine hypertension.
About Northera
NORTHERA" (droxidopa), the lead investigational agent in Chelsea Therapeutics' broad pipeline, is currently in Phase III clinical trials for the treatment of symptomatic neurogenic orthostatic hypotension (NOH) in patients with primary autonomic failure a group of diseases that includes Parkinson's disease, multiple system atrophy (MSA) and pure autonomic failure (PAF). Droxidopa is a synthetic catecholamine that is directly converted to norepinephrine (NE) via decarboxylation, resulting in increased levels of NE in the nervous system, both centrally and peripherally. Droxidopa is also being studied for the treatment of fibromyalgia in an ongoing Phase II trial and completed a Phase II trial in intradialytic hypotension (IDH) study with positive results.
About Chelsea Therapeutics
Chelsea Therapeutics is a biopharmaceutical development company that acquires and develops innovative products for the treatment of a variety of human diseases. Chelsea's most advanced drug candidate, NORTHERA" (droxidopa), is an orally active synthetic precursor of norepinephrine initially being developed for the treatment of neurogenic orthostatic hypotension. In addition to Droxidopa, Chelsea is also developing a portfolio of metabolically inert oral antifolate molecules engineered to have potent anti-inflammatory and anti-tumor activity to treat a range of immunological disorders, including two clinical stage product candidates: CH-1504 and CH-4051. Preclinical and clinical data suggest superior safety and tolerability, as well as increased potency versus methotrexate (MTX).
This press release contains forward-looking statements regarding future events. These statements are just predictions and are subject to risks and uncertainties that could cause the actual events or results to differ materially. These risks and uncertainties include risk of regulatory approvals, including our planned NDA for Northera; risks and costs of drug development, including the uncertainty of cost, timing and outcome of clinical trials like Study 306; our reliance on our lead drug candidates Droxidopa and CH-4051; our need to raise operating capital; our history of losses; reliance on collaborations and licenses; intellectual property risks; competition; market acceptance for our products, if any are approved for marketing; and reliance on key personnel including specifically Dr. Pedder.
CONTACT: Investors & Media:
Kathryn McNeil
Chelsea Therapeutics
718-788-2856
mcneil@chelseatherapeutics.com
Source: Chelsea Therapeutics 2011 GlobeNewswire, Inc.
Hopefully this will be the new drug that will cover all of us dys pateints!
Inspired,
Michele
Article
And here's more info
Chelsea Therapeutics Announces Northera Poster Presentations and Symposium on Neurogenic Orthostatic Hypotension at MDS 15th International Congress of Parkinson's Disease and Movement DisordersMon May 2, 2011 7:30 am | about: CHTP Font Size: PrintEmail Recommend 0 Share this page
Share9 NEWS PROVIDED BY:
GlobeNewswire
Dr. Robert Hauser to Present Late Breaking Poster Highlighting Efficacy of Northera in Patients with Neurogenic Orthostatic Hypotension associated with Parkinson's Disease on June 8th 2011
Dr. Gregor Wenning to Present Poster on Safety and Efficacy of Northera in Multiple System Atrophy on June 8th 2011
Chelsea to Sponsor Symposium Reviewing Results from Northera Clinical Program in Neurogenic Orthostatic Hypotension on June 9th 2011
CHARLOTTE, N.C., May 2, 2011 (GLOBE NEWSWIRE) -- Chelsea Therapeutics International, Ltd. (Nasdaq:CHTP) announced that two posters describing the clinical benefit of NORTHERA" (droxidopa) have been accepted for presentation at the Movement Disorder Society's 15th International Congress of Parkinson's Disease and Movement Disorders June 5-9, 2011 at The Metro Toronto Convention Centre, Toronto, Ontario, Canada. In addition to the two posters presentations, Chelsea will sponsor a symposium detailing the clinical results of Northera for the treatment of neurogenic orthostatic hypotension (NOH) at 12:00 pm on June 9, 2011.
The following poster detailing results from Northera Study 306A has been accepted as a late breaking submission and will be presented by the study's principal investigator, Dr. Robert A. Hauser, on June 8, 2011 from 1:30 pm 3:00 pm ET:
"Efficacy of Northera (droxidopa) in Patients with Neurogenic Orthostatic Hypotension associated with Parkinson's disease (PD)," Robert A. Hauser (1) MD, Ramon Gil (2) MD and Stuart Isaacson (3) MD. Tampa (1), Port Charlotte (2), Boca Raton (3) Florida, USA. Abstract Number: LB21
In addition, the following poster will be presented during Poster Session III, June 8, 2011, from 9:00 am - 6:00 pm ET:
"Safety and efficacy of Northera (droxidopa) in Multiple System Atrophy," Gregor K Wenning, MD, PhD MSc1, Horacio Kaufmann, MD2, Christopher J Mathias, D.Phil, DSc, F.R.C.P3 and Pietro Cortelli, MD4. 1 Division of Clinical Neurobiology, Innsbruck Medical University; 2 NYU Medical Center; 3 Division of NeuroScience and Psychological Medicine, Imperial College of Science, Technology, and Medicine at St Mary's London and 4 Department of Neurosciences, University of Bologna. Abstract Number: 778
Chelsea will also be sponsoring a symposium, featuring a panel of academic thought leaders and experts in the field of movement disorders, to review the role of norepinephrine in primary autonomic failure, clinical findings and therapeutic opportunities for Northera in neurogenic orthostatic hypotension. The session being held on Thursday, June 9, 2011 at 12:00 pm ET will be moderated by Joseph Jankovic, MD, Baylor College of Medicine, Houston, TX, and will include the following presentations:
The Role of Norepinephrine in Primary Autonomic Failure associated with PD, MSA and PAF
Peter LeWitt, Southfield, MI, USA
Focus on NOH and Autonomic Failure in PD
Northera (droxidopa) Phase III Clinical Data
Gregor Wenning, Innsbruck, Austria
Clinical Trial Considerations for Neurogenic Orthostatic Hypotension (NOH)
Study 301 Results
Orthostatic Hypotension Questionnaire (OHQ)
Symptoms; Activities of Daily Living
Preliminary patient falls data
Northera (droxidopa) 306A Clinical Data
Robert Hauser, Tampa, FL, USA
OHQ and Falls
Movement Disorder Society Unified Parkinson's disease Rating Scale (MDS-UPDRS) scores
Hoehn & Yahr scores
Prospective study in 306B
About Neurogenic Orthostatic Hypotension
NOH is a neurogenic disorder resulting from deficient release of norepinephrine, the neurotransmitter used by sympathetic autonomic nerves to send signals to the blood vessels and the heart to regulate blood pressure. This deficiency results in lightheadedness, dizziness, blurred vision and fainting episodes when a person assumes a standing position. Symptoms of chronic NOH can be incapacitating, not only putting patients at high risk for falls and associated injuries, but also severely affecting the quality of life of patients and their loved ones. The only FDA-approved treatment for orthostatic hypotension has a black box warning indicating that the drug has not been shown to be effective in alleviating the symptoms of the condition and is associated with a pronounced side-effect profile including significant supine hypertension.
About Northera
NORTHERA" (droxidopa), the lead investigational agent in Chelsea Therapeutics' broad pipeline, is currently in Phase III clinical trials for the treatment of symptomatic neurogenic orthostatic hypotension (NOH) in patients with primary autonomic failure a group of diseases that includes Parkinson's disease, multiple system atrophy (MSA) and pure autonomic failure (PAF). Droxidopa is a synthetic catecholamine that is directly converted to norepinephrine (NE) via decarboxylation, resulting in increased levels of NE in the nervous system, both centrally and peripherally. Droxidopa is also being studied for the treatment of fibromyalgia in an ongoing Phase II trial and completed a Phase II trial in intradialytic hypotension (IDH) study with positive results.
About Chelsea Therapeutics
Chelsea Therapeutics is a biopharmaceutical development company that acquires and develops innovative products for the treatment of a variety of human diseases. Chelsea's most advanced drug candidate, NORTHERA" (droxidopa), is an orally active synthetic precursor of norepinephrine initially being developed for the treatment of neurogenic orthostatic hypotension. In addition to Droxidopa, Chelsea is also developing a portfolio of metabolically inert oral antifolate molecules engineered to have potent anti-inflammatory and anti-tumor activity to treat a range of immunological disorders, including two clinical stage product candidates: CH-1504 and CH-4051. Preclinical and clinical data suggest superior safety and tolerability, as well as increased potency versus methotrexate (MTX).
This press release contains forward-looking statements regarding future events. These statements are just predictions and are subject to risks and uncertainties that could cause the actual events or results to differ materially. These risks and uncertainties include risk of regulatory approvals, including our planned NDA for Northera; risks and costs of drug development, including the uncertainty of cost, timing and outcome of clinical trials like Study 306; our reliance on our lead drug candidates Droxidopa and CH-4051; our need to raise operating capital; our history of losses; reliance on collaborations and licenses; intellectual property risks; competition; market acceptance for our products, if any are approved for marketing; and reliance on key personnel including specifically Dr. Pedder.
CONTACT: Investors & Media:
Kathryn McNeil
Chelsea Therapeutics
718-788-2856
mcneil@chelseatherapeutics.com
Source: Chelsea Therapeutics 2011 GlobeNewswire, Inc.
Hopefully this will be the new drug that will cover all of us dys pateints!
Inspired,
Michele
Saturday, May 21, 2011
Party Leftovers
For some reason this week I've been comparing myself to party leftovers. You know.... those things you throw in the trash after the party is over; the shredded pinata, deflated balloons, and the drink saturated napkins. All looking quite stunning before the party, all carefully chosen and meticulously placed. Only to be thrown hurriedly into the nearest Hefty garbage bag as soon as the party comes to an end.
It all started on Tuesday night after my open house at my school. After many weeks of working with 32 kindergartners on special class projects, cleaning the room, prepping bulletin boards and binding student work it was all over in an hours time. It left me feeling like a shredded pinata that has been joyfully hit with a large stick by many exuberant children on a mission to be the one to burst it open and the first to grab handfuls of candy. There wasn't a part of my body that didn't feel achy and bruised.
On Thursday I had a School Site Council meeting and two parent/teacher conferences. When I got home all I wanted to do was get in bed and hide. That night my oxygen levels felt low, tingling arms and lips with a side order of brain fog. I felt like a balloon that has been deflated, completely stretched out of shape and wishing for more air.
On Saturday I had a wedding shower I was looking forward to going to. When I got there I felt pretty good, all of my closest friends were there and it sent my spirits soaring to see them and connect with each of them. When I walked in everything was lovely, all carefully thought out and prepared. As the party carried on my body began to rebel. My body doesn't seem to appreciate sitting for any length of time and church folding chairs are not the most comfortable. Sitting in one for more than 10 minutes can make the sturdiest hiney squirm. The noise level seemed to increase as each minute passed as everyone was laughing, sharing and enjoying one another all I wanted to do was to flee to my soft bed and take a nap because my body had finally hit overload. As I headed out the door to leave, I passed a sopping wet napkin and thought to myself that it looked how I felt, overused and a shapeless clump ready for the nearest Hefty trash bag. As I headed for home I began feeling resentful that POTS seems to be stealing the things I enjoy most
Party leftovers seems to be an ongoing theme for how I've been feeling the past month. All I seem to want to do is curl up in bed with a good book. It's times like these that I loath myself the most, I should be joyful and thankful for this precious life I've been given, but all I want is an overhaul and my life back as it was. Having a pity party and looking for the Hefty bag!
Michele
Psalm 26:2
"Cross examine me, Oh Lord, and see that this is so; test my motives and affections too"
It all started on Tuesday night after my open house at my school. After many weeks of working with 32 kindergartners on special class projects, cleaning the room, prepping bulletin boards and binding student work it was all over in an hours time. It left me feeling like a shredded pinata that has been joyfully hit with a large stick by many exuberant children on a mission to be the one to burst it open and the first to grab handfuls of candy. There wasn't a part of my body that didn't feel achy and bruised.
On Thursday I had a School Site Council meeting and two parent/teacher conferences. When I got home all I wanted to do was get in bed and hide. That night my oxygen levels felt low, tingling arms and lips with a side order of brain fog. I felt like a balloon that has been deflated, completely stretched out of shape and wishing for more air.
On Saturday I had a wedding shower I was looking forward to going to. When I got there I felt pretty good, all of my closest friends were there and it sent my spirits soaring to see them and connect with each of them. When I walked in everything was lovely, all carefully thought out and prepared. As the party carried on my body began to rebel. My body doesn't seem to appreciate sitting for any length of time and church folding chairs are not the most comfortable. Sitting in one for more than 10 minutes can make the sturdiest hiney squirm. The noise level seemed to increase as each minute passed as everyone was laughing, sharing and enjoying one another all I wanted to do was to flee to my soft bed and take a nap because my body had finally hit overload. As I headed out the door to leave, I passed a sopping wet napkin and thought to myself that it looked how I felt, overused and a shapeless clump ready for the nearest Hefty trash bag. As I headed for home I began feeling resentful that POTS seems to be stealing the things I enjoy most
Party leftovers seems to be an ongoing theme for how I've been feeling the past month. All I seem to want to do is curl up in bed with a good book. It's times like these that I loath myself the most, I should be joyful and thankful for this precious life I've been given, but all I want is an overhaul and my life back as it was. Having a pity party and looking for the Hefty bag!
Michele
Psalm 26:2
"Cross examine me, Oh Lord, and see that this is so; test my motives and affections too"
Saturday, April 30, 2011
Happy Birthday-3 years with my new POTS "normal"
*Dropping heart rate-check
*Rising BP-check
*Dizzy-check
*Short of breath-check
*Nausea-check
*Blurred vision-check
*Brain fog-check
*Fatigue-check
All is "normal".
It's amazing after living with POTS for three years I've grown quite accustomed to my new POTSy "normal". Going from a healthy energizer bunny type to a blechy couch potato is not meant for the "faint"hearted (ha-ha-ha). I began this journey on a retreat in Big Bear on April 27th 2008, with a quick diagnosis on May 7th 2008. It's been quite a journey and I've learned allot from it.
The first two years I feel were the hardest for me. I compare it to being a new mom the first couple months with my new born son Sean. Every squeak, whimper, cry or rise in temperature he had I imagined as a major catastrophe that needed an immediate consultation with his pediatrician. My son's pediatrician was a Saint. I've mellowed out a bit since then, which I'm sure my current doctors appreciate. Fear was a constant with POTS. Each symptom was frightening and filled me with a sense of constant gloom and doom. Who wouldn't freak out a bit when your heart rates goes from normal (50's) then drops in the 30's in seconds, only to be followed by a a sharp rise to 160's within a minute. I thought for sure I was going to die. The symptoms of POTS are scary and bazaar! It also doesn't help to have an illness that is rare. Most doctors don't know how to treat it, and it can be frustrating to hear your doctor say he doesn't have a clue as to how to treat you. The thing that has saved me is the awesome group of fellow POTSies who have shared their experiences and helped me to realize that what my body was doing is "normal" for POTS.
My new "normal" I now wear like an old favorite sweater. After experiencing freaky heart rates and blood pressure on a regular basis and the deluge of regular POTS symptoms, I no longer freak out. I always remind myself it could be much worse; feeding tubes, catheters and being bed ridden. Knowing how bad it could be truly makes me appreciate living in the now.
H A P P Y B I R T H D A Y P O T S ! ! !
3 years old and waiting for a cure.
Inspired,
Michele
Matthew 6:34
"So don't be anxious about tomorrow, God will take care of your tomorrow too. Live one day at a time."
*Rising BP-check
*Dizzy-check
*Short of breath-check
*Nausea-check
*Blurred vision-check
*Brain fog-check
*Fatigue-check
All is "normal".
It's amazing after living with POTS for three years I've grown quite accustomed to my new POTSy "normal". Going from a healthy energizer bunny type to a blechy couch potato is not meant for the "faint"hearted (ha-ha-ha). I began this journey on a retreat in Big Bear on April 27th 2008, with a quick diagnosis on May 7th 2008. It's been quite a journey and I've learned allot from it.
The first two years I feel were the hardest for me. I compare it to being a new mom the first couple months with my new born son Sean. Every squeak, whimper, cry or rise in temperature he had I imagined as a major catastrophe that needed an immediate consultation with his pediatrician. My son's pediatrician was a Saint. I've mellowed out a bit since then, which I'm sure my current doctors appreciate. Fear was a constant with POTS. Each symptom was frightening and filled me with a sense of constant gloom and doom. Who wouldn't freak out a bit when your heart rates goes from normal (50's) then drops in the 30's in seconds, only to be followed by a a sharp rise to 160's within a minute. I thought for sure I was going to die. The symptoms of POTS are scary and bazaar! It also doesn't help to have an illness that is rare. Most doctors don't know how to treat it, and it can be frustrating to hear your doctor say he doesn't have a clue as to how to treat you. The thing that has saved me is the awesome group of fellow POTSies who have shared their experiences and helped me to realize that what my body was doing is "normal" for POTS.
My new "normal" I now wear like an old favorite sweater. After experiencing freaky heart rates and blood pressure on a regular basis and the deluge of regular POTS symptoms, I no longer freak out. I always remind myself it could be much worse; feeding tubes, catheters and being bed ridden. Knowing how bad it could be truly makes me appreciate living in the now.
H A P P Y B I R T H D A Y P O T S ! ! !
3 years old and waiting for a cure.
Inspired,
Michele
Matthew 6:34
"So don't be anxious about tomorrow, God will take care of your tomorrow too. Live one day at a time."
Monday, April 18, 2011
Another One Bites the Dust!
Bowm...bowm....bowm.... Another one bites the dust! Another favorite past time has bit the dust, and another ones gone and another ones gone and another one bites the dust! I'm so glad there's music to soften the blow. The barbecue is now off limits to this temper"mental" POTSy body of mine.
The weather was perfect yesterday (low 70's). Most of my family was home, so I decided it was a perfect time to light up the barbecue and cook up some mouth watering steaks and buttery roasted potatoes. As I was flipping the steaks and cooking up potatoes the smell of the smoke just shut down my lungs and sent my body instantly into a POTSy crash. I haven't crashed in a while, so it took me by surprise. I should have foreseen this coming this winter when I would step outside while neighbors had their fireplaces burning. My lungs would go into instant shut down and I'd have to hurry into the house. These things always seem to catch me off guard. Last year I didn't have a problem with the barbecue, so why this year?
I've been Little Miss BBQ chef since I was 10 years old. I love hovering over food on the grill until it's cooked to perfection. Swatting at onlookers to step away from grill so that I can do my barbecue magic. Followed by accolades from friends and family of my mad barbecue skills!
I guess it's time to pass my beloved barbecue tools and blessing to the next generation barbecue chef, my son Sean. Sean, may you never burn a single meal, may your meat be cooked to perfection, and may your food be cooked with perfect grill lines.
Inspired,
Michele
Exodus 29:41
And the other lamb you shall offer at twilight, and shall offer with it the same grain offering as the morning and the same libation, for a soothing aroma, and offering by fire to the Lord.
I always wonder if God loves a good barbecue? I'm looking forward to cooking up a great barbecue feast when I'm in heaven!
The weather was perfect yesterday (low 70's). Most of my family was home, so I decided it was a perfect time to light up the barbecue and cook up some mouth watering steaks and buttery roasted potatoes. As I was flipping the steaks and cooking up potatoes the smell of the smoke just shut down my lungs and sent my body instantly into a POTSy crash. I haven't crashed in a while, so it took me by surprise. I should have foreseen this coming this winter when I would step outside while neighbors had their fireplaces burning. My lungs would go into instant shut down and I'd have to hurry into the house. These things always seem to catch me off guard. Last year I didn't have a problem with the barbecue, so why this year?
I've been Little Miss BBQ chef since I was 10 years old. I love hovering over food on the grill until it's cooked to perfection. Swatting at onlookers to step away from grill so that I can do my barbecue magic. Followed by accolades from friends and family of my mad barbecue skills!
I guess it's time to pass my beloved barbecue tools and blessing to the next generation barbecue chef, my son Sean. Sean, may you never burn a single meal, may your meat be cooked to perfection, and may your food be cooked with perfect grill lines.
Inspired,
Michele
Exodus 29:41
And the other lamb you shall offer at twilight, and shall offer with it the same grain offering as the morning and the same libation, for a soothing aroma, and offering by fire to the Lord.
I always wonder if God loves a good barbecue? I'm looking forward to cooking up a great barbecue feast when I'm in heaven!
Saturday, April 2, 2011
Super Teacher vs. Super Wimp!
I often believe that there are two separate people living inside this POTSy body of mine. They seem as opposite as night and day. The super teacher whose strong and making a difference in the world. I can comfort a weeping five year old in her arms one moment then sing the peanut butter song with hand motions and dancing the next. Then there's the super wimp who can't walk up a set of stairs at church without being dizzy and out of breath by the time I get to the top. My classroom life and my home life are so different that I'm always aware of the contrast. Yesterday I had a 20 minute chunk of time that seemed super human or super teacher. As I recall each incident I shake my head in disbelief that I was the one who did all those things. Here's a play by play of that chunk of time;
10:38
Finished a K-W-L chart on oceans with the class.
Made out a nurses pass for a sick student.
Refill the baby wipe container.
Corrected six papers with students.
Helped a student figure out how to get an answer to a math problem.
Tied a shoe.
Stop two running students and mark their behavior charts.
Checked the bathroom for urine on the floor after a student complaint.
Called custodian for a clean up of urine on bathroom floor.
Wash the eyes and hands of student who got bubbles in his eyes.
Comforted a crying student.
Settled an argument between two students over crayon stealing.
Picked up some trash and a backpack from the floor (which is a never ending job).
Quieted the class twice with a clapping chant.
Directed several students to get back to their seats and get to work.
Unhooked a child's earring that got stuck on the earphones to the listening center.
Corrected seven more papers.
Called clean up and gave positive complements to those following the rules.
Excused the class for lunch.
11:00
Now compare this with this mornings trip to the mall.
9:50
Park in front of Target.
Walk into the store and pick up four items (including my happy chicken free range eggs) all on the first floor of the store.
Wait in a line of only two people to pay for my items.
Walk back to my car.
Drive to a handicapped parking place in front of Macy's because I'm already pooped.
Walk straight to the make-up department on the first floor.
Purchase my foundation for my pasty white face.
Walk back to my car.
When I get outside the store I'm ready to curl up on a bench, I'm so tired.
10:17
My classroom time described above is a little over twenty minutes, but I had been working in my classroom since 7:20 that morning.
By the time I get to the staff parking lot at the end of the day I feel like I've been hit by a bus full of kindergartners. I'm too tired to have a social life outside of my classroom. I know the reason I'm able to work is because God has a purpose for me there. Every day I pray that I can somehow live out that purpose. Being human I often fall short. There are days when the stresses of the classroom make me wish for Friday to come so I can rest on the weekend. I'm not sure why I do that, I'm most "normal" when I'm at work. I feel like I'm almost living up to my potential at work. Why wish that time away?
Super Wimpy Michele
Philippians 3:13-14
Brethren, I do not regard myself as having laid hold of it yet; but one thing I do: forgetting what lies behind and reaching forward to what lies ahead. I press on toward the goal for the prize of the upward call of God in Christ Jesus.
10:38
Finished a K-W-L chart on oceans with the class.
Made out a nurses pass for a sick student.
Refill the baby wipe container.
Corrected six papers with students.
Helped a student figure out how to get an answer to a math problem.
Tied a shoe.
Stop two running students and mark their behavior charts.
Checked the bathroom for urine on the floor after a student complaint.
Called custodian for a clean up of urine on bathroom floor.
Wash the eyes and hands of student who got bubbles in his eyes.
Comforted a crying student.
Settled an argument between two students over crayon stealing.
Picked up some trash and a backpack from the floor (which is a never ending job).
Quieted the class twice with a clapping chant.
Directed several students to get back to their seats and get to work.
Unhooked a child's earring that got stuck on the earphones to the listening center.
Corrected seven more papers.
Called clean up and gave positive complements to those following the rules.
Excused the class for lunch.
11:00
Now compare this with this mornings trip to the mall.
9:50
Park in front of Target.
Walk into the store and pick up four items (including my happy chicken free range eggs) all on the first floor of the store.
Wait in a line of only two people to pay for my items.
Walk back to my car.
Drive to a handicapped parking place in front of Macy's because I'm already pooped.
Walk straight to the make-up department on the first floor.
Purchase my foundation for my pasty white face.
Walk back to my car.
When I get outside the store I'm ready to curl up on a bench, I'm so tired.
10:17
My classroom time described above is a little over twenty minutes, but I had been working in my classroom since 7:20 that morning.
By the time I get to the staff parking lot at the end of the day I feel like I've been hit by a bus full of kindergartners. I'm too tired to have a social life outside of my classroom. I know the reason I'm able to work is because God has a purpose for me there. Every day I pray that I can somehow live out that purpose. Being human I often fall short. There are days when the stresses of the classroom make me wish for Friday to come so I can rest on the weekend. I'm not sure why I do that, I'm most "normal" when I'm at work. I feel like I'm almost living up to my potential at work. Why wish that time away?
Super Wimpy Michele
Philippians 3:13-14
Brethren, I do not regard myself as having laid hold of it yet; but one thing I do: forgetting what lies behind and reaching forward to what lies ahead. I press on toward the goal for the prize of the upward call of God in Christ Jesus.
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