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Tag: invisible illness

invisible…

invisible…

Today marks the end of Invisible Illness Week and, as you may remember, October is Dysautonomia Awareness month. In the past I have helped organize events and fundraisers during the month of October, but didn’t get around to it this year. I’m setting it as an intention for next year. If you’ll bear with me, I’d like to tell you a story that illustrates why dysautonomia and invisible illness awareness are important to me. As you know, I recently traveled…

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the patient caregiver…

the patient caregiver…

I have mentioned this before, but being a patient who is also a caregiver is one of the more capricious dichotomies of my life. I certainly never expected to be a patient at this age, and I hoped for a couple of decades before I would become a caregiver. When I talk with other caregivers (who are usually my mom’s age, taking care of their parents who are my grandmother’s age),  they often tell me that caregiving is a gift…

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suicide survey…

suicide survey…

Standing Up to POTS (an organization for which I serve on the Board) is partnering with counselors and suicide prevention specialists to tackle the issue of suicide risk in chronically ill populations.  We need patients with invisible illnesses (any, not just POTS) to complete a survey so we can develop better screening tools to identify the risk of suicide in patients with chronic illnesses. The survey is completely anonymous and will not collect any personal information from you. At this…

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stop comparing every illness to cancer…

stop comparing every illness to cancer…

I expect this post will be wildly unpopular, but I am going to say it anyway. Stop comparing every illness to cancer. The day I received my chronic illness diagnosis still ranks among the worst days of my life. It solidified my worst fear during the years of testing and misdiagnoses and uncertainty: that my life would never be the same. Friends and family rushed in with loving expressions and compassionate words. And, inevitably, as every newly diagnosed chronic illness…

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administrative updates…

administrative updates…

Hi friends, I’d like to tell you that the title for this post is some deep metaphor for the wisdom I’m about to bestow, but it’s actually very literal. I made some updates to this blog, and they were administrative in nature. How boooooooring. Formerly, my blog was hosted by WordPress.com, which allows only minor changes. So, I decided to upgrade and self-host a WordPress.org blog. If you read this through an email, please navigate on over to www.dysautonomiac.com and let…

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understanding invisible illness…

understanding invisible illness…

Like usual, I’m behind on my blog posts. I have about 5 drafts on different topics, but have yet to find the time to finish any of them. As you know, lots going on around here lately with my mom participating in the PSP study, and my blog is suffering. So, I was pleased when Victoria contacted me and asked if I would be interested in posting some of her content on my blog. Victoria owns the website Burning Nights about…

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invisible illness week: 30 things about me…

invisible illness week: 30 things about me…

This week is National Invisible Chronic Illness Awareness Week! In observance, invisibleillnessweek.com offers some great articles and podcasts for those with chronic illnesses and their caregivers. I encourage you to check it out. Invisible Illness Awareness Week also encourages bloggers to participate by blogging about the theme for the year, or posting this “30 Things About My Illness”. The theme this year is #invisiblefight, which I think is a wonderful theme, but which, for some reason, is leaving me speechless. Sure,…

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happy new year…

happy new year…

Just wanted to wish you all a very happy start to 2015! May your new year be filled with love, happiness, and above all….good health! I’m home with a headache which is slowly inching towards migraine status, so I may skip the champagne tonight. But the BF is making me dinner, it’s a beautiful evening in southern California, and I’m glad to be alive. And, I have plans for 2015 which include a new POTS physical therapy plan, a wedding, and…

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SSRI withdrawal…

SSRI withdrawal…

After being diagnosed with POTS, the first medication I was prescribed was a selective serotonin reuptake inhibitor (SSRI).  SSRIs are antidepressants but are often prescribed for off-label uses as well, such as for the treatment of dysautonomia.  Serotonin is a neurotransmitter used by the brain to control autonomic functions of the body, including heart rate, blood pressure and intestinal motility.  Doctors speculate that production and regulation of serotonin is faulty in those of us with autonomic dysfunction (i.e. dysautonomia).  Thus,…

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something, something darkside…

something, something darkside…

A good friend of mine wrote a blog series for the Spirit of War military blog about suicide in September for suicide awareness month.  As suicide has been an important issue in the military community for decades, her blog series was both relevant and timely.  The blog posts acknowledged the stigma surrounding suicide, then advocated for ending that stigma and opening up the discussion. There is an emotional darkside to illness.  The pain, loneliness, difficulty coping all can lead down…

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