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Tag: 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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my cromolyn fiasco…

my cromolyn fiasco…

Fair warning: I am likely going to drop an expletive or two in this post, because I’m very annoyed. Current frustration level: F-bomb. For mast cell activation disorder (MCAD), I take a medication called cromolyn. Actually, if you want to get technical, its “cromolyn sodium oral concentrate”. It consists of these little tubes filled with clear medication that come latched together in a discreet package. Discreet shiny, glittery, crinkly “let me see how many people I can make stare while…

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i need the D…

i need the D…

Friends, I need the D. You know how when you feel like you’re in a rut and you’re not feeling sexy, you know you just need to get some D? Late at night, when you first wake up…it doesn’t matter when you get it. You even consider getting some D outside in broad daylight. Sometimes you know you need it so bad, you’re even willing to pay for the big D. That’s soooo me right now. I’m dying for some…

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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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POTS mini conference…

POTS mini conference…

Great news! If any of you are located near southern California, I highly recommend you check this out! CHOC (Children’s Hospital of Orange County) is offering a great POTS conference on December 3-4, 2016 in Orange, California. The conference is $25.00 per person for patients/family members. There is also a conference for medical professionals that you can share with your doctor. The schedule includes speeches from many of the POTS superstars as well as a breakout session for teens so…

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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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