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Category: MCAD

the finality of the fiasco…

the finality of the fiasco…

Oh my God, you guys. Guess what was waiting for me when I arrived home on Thursday??   Cromolyn sodium oral concentrate! FIVE boxes of cromolyn sodium oral concentrate! 11.2 POUNDS of cromolyn sodium oral concentrate! That’s 5 KILOGRAMS OF CROMOLYN SODIUM ORAL CONCENTRATE!! Yes, I actually balanced five boxes of cromolyn on my bathroom scale. I have a lot of free time. I can’t even hazard a guess as to how long 11.2 lbs of cromolyn will last. Hopefully…

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conference videos…

conference videos…

Hi friends! In my previous post about the POTS/MCAD/EDS conference I went to in December, I promised I would let you know as soon as the recordings of the speakers were available. The videos are now up, organized by speaker and topic, at the Children’s Hospital of Orange County website here. Feel free to share that link with others who might be interested. If you watch any of the presentations, I’d be interested in hearing what you think! Come back…

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conference recap…

conference recap…

I was really hoping to get this out to you all before the end of 2016, but I’m 23 hours late. I hope you’ll all forgive me. [P.S. HAPPY NEW YEAR!] As you may remember, I attended the Connecting the Dots conference about POTS/MCAD/EDS in December and want to tell you a little about that experience. I believe the videos of the individual speakers at the conference will be made available early this year. I will post here once I…

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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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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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die(t)ing to fit in…

die(t)ing to fit in…

As usual, I am behind on my posts. We just moved into a new house, but more on that later. Although my tests for mast cell activation disorder (MCAD) came back normal, my POTS doctor still thinks I might have MCAD because (1) I do exhibit typical histamine responses which (2) respond well to the cromolyn, H1 & H2 blocker treatment. If it wasn’t for cromolyn, I would never eat. Despite responding well to MCAD treatment, my blood pressure has…

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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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these are not the results you are looking for…

these are not the results you are looking for…

By the title of this post I do not mean to suggest I received bad news in the form of test results. I was really just looking for an excuse to make a Star Wars reference. The results from my mast cell activation disorder (MCAD) test are in. The results actually came in a couple weeks go, but I have been too tired to post them. You may remember that this is the test for which I had to carry…

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so this is marriage…

so this is marriage…

Note: I am back from the honeymoon now, but actually wrote this post after the wedding, before the honeymoon. In the rush to get off to Hawaii, I forgot to post it. In the interest of not overwhelming you with a really long post, I decided to post this one now, in its original state, and follow it with a post about the honeymoon. – Linds —— Well, I did it. I got married! If you have been following this blog,…

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the winds of change…

the winds of change…

Just over five years ago, I took the California state bar exam. If you’re not familiar, the bar exam is the test you must take in order to become a licensed attorney. With three entire days of testing, it’s a rigorous exam, one which you have to spend months studying for if you have any hopes of passing. The two and a half months I spent studying for the test are a blur. On the first day of bar study…

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