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Tag: beta blocker

hair loss and chronic illness…

hair loss and chronic illness…

I’d love to tell you that before developing postural orthostatic tachycardia syndrome (POTS) and mast cell activation disorder (MCAD), I had silky, lustrous locks. But that would be a lie. I have always had unfortunate hair. I was born with a thick black mop atop my head. As a little girl, it lightened up a lot and had cute little curls on the ends. But then I turned into a bit of a tomboy and my mom cut off all…

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#ThisIsChronicIllness…

#ThisIsChronicIllness…

Today marks the first day of Dysautonomia Awareness month, and tomorrow is the last day of Invisible Illness Awareness week, so I like to think of today as the “Invisible – Dysautonomia Vortex” where the two cross. The theme for Invisible Illness Awareness Week this year is “This is Chronic Illness” where people are encouraged to share a glimpse into their daily life. If you’d like to participate, more information is available here. I decided that my contribution to this…

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round two…

round two…

If you’re a regular reader of this blog, you know that for the past six months I have helped to take care of my mom part-time. She was diagnosed with progressive supranuclear palsy (PSP), a degenerative brain disease in the Parkinson’s family, last October after years of showing symptoms. Six months ago, my mom was accepted into a drug study at UCSD for a new drug currently undergoing clinical trials. The study was originally for 7 months, and at this…

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just an update…

just an update…

I feel I owe you all a follow up after my last few posts. After having a difficult time for a few weeks, I finally started to feel a little better this week (assuming 2.5 day migraines don’t count). My mom returns tomorrow for her clinical drug test and will be here all next week, so the timing is perfect. I seem to have established a regular pattern where I push through my mom’s visit, feel awful for a while…

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the wedding edition…

the wedding edition…

I realized the other day that my wedding date is now less than four months away. Four. FOUR. You may not know this, but I have actually been married before. That’s right. When I was three years old, I married the boy down the street. Our older sisters were best friends, and they thought it would be funny to marry us. We didn’t agree, but as the younger siblings, we didn’t have much of a say. Since I was so…

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pressing the snooze button…

pressing the snooze button…

This post isn’t about catching a few extra zzzzzzz’s in the morning before it’s time to wake up.  In fact, the only alarms I use anymore are medication reminders. Sure, I love a dream-filled sleep as much as the next gal, although these days dreams of postural orthostatic tachycardia syndrome (POTS) have replaced my staple dreams of cute men and buckets of money. And my recurring nightmares where I’m back in high school and can’t remember which class is next, and…

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no more pills…

no more pills…

Everyone loves babies, right? They’re cute and cuddly and they have that oddly appealing baby smell (not to be confused with the completely revolting dirty diaper smell) that makes your heart expand and your uterus contract.  As they get older, we can dress them up in adorable outfits, mold them into upstanding humans and teach them the meaning of life. As long as it isn’t any more difficult than my recent week-long dogsitting experience, I’m totally in.      …

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medication update…

medication update…

As you know from a previous post, I started cromolyn about six weeks ago. I know a few readers had recently started or were about to start cromolyn as well, and I wanted to provide an update and hear about your experiences. At first I thought cromolyn may have been having a huge impact on my symptoms.  Unfortunately, it’s not the wonder drug I hoped it would be, but I am still finding some benefits in it. Although, in cromolyn’s…

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and so it begins…

and so it begins…

As you may remember, I recently had an appointment with my postural orthostatic tachycardia syndrome (POTS) doctor regarding changes in medication.  In my last post I talked about the new medication I’m on, cromolyn.  I’ll provide a cromolyn update in a week or two – I want to give it a little more time before I make any official comments – but so far it isn’t proving to be the miracle drug I was hoping for. At that appointment, one…

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MCAD, FMS and other random letters…

MCAD, FMS and other random letters…

I had an appointment with my cardiologist yesterday to discuss the bradycardia I had been experiencing. However, it takes about 6 weeks to get an appointment with this doctor, and by the time I was able to get in to see him, my heart rate had increased. As you may remember, I was having problems with a low pulse of high 30’s to low 40’s bpm.  For the past week, my HR has been up in the 60’s and 70’s….

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