September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

June 20th, 2018 Me and my friend PTSD (post-traumatic stress disorder)...

By | Published Wednesday, June 20, 2018


What I'm realizing is that in order to deal with Anxiety/PTSD, I have to try... this means doing what feels like walking right into the center of a storm... a storm of ALL my symptoms... it's like saying "OK, Anxiety, come get me, give me your best shot..." because trying stuff is the way to find out what my real parameters are... does it work, or not?  Sounds so simple... but it's SO hard.

I don't believe I could do this on my own... I believe anyone trying to deal with some of the really tough anxiety disorders - OCD, PTSD, agoraphobia to name a few - on their own, won't work... I know *I* need my psychiatrist, CBT therapist, AND meds... Dr. Mirsky says the meds are like body armor... I feel like I need that.

I've realized how much ENERGY I put into being on high alert ALL THE TIME, and how distorted my thinking can get... but letting go is incredibly hard... I told Dr. Mirsky I wanted to be DONE already... he said "I know... but you've been dealing with this for years (meaning, since I got sick), so it's gonna take time..."

I want to own my progress, but I feel like if I ease up a bit on my HIGH ALERT, and try something, then SOMETHING bad is gonna happen... "hello Anxiety" - that's how it works - PTSD tries to keep you STUCK - no risk, no PTSD Anxiety... over time, the idea is to make all my vision and vestibular symptoms less loaded... more benign... Dr. Mirsky believes I can do this... so does Christina... he says "you do too, THAT'S why you're here... to get help..."   One. Little. Step. at. a. time.

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June 17th, 2018 A more basic kind of forgiveness...

By | Published Sunday, June 17, 2018


Being able to write more is a good thing, I know, and I need to put this out there - maybe I'm not alone in feeling this -

I feel just plain bad sometimes - guilty - about having limitations... to put it more basically, I feel bad that I got sick - a chronic illness kind of sick... it's hard for me to admit this to myself... if I wasn't dealing with my disorders, I wouldn't have to ask for the help I DO need to ask for.

I can't drive, my normal activity level during a day or week - though better than it used to be - is so much less than a healthy person... I feel sometimes like I'm letting others down, making demands on them a healthy me wouldn't have to... I hate having to remind others of my limitations.

I know Christina (my new therapist) always says you have to try in order to know, but sometimes - particularly when it hasn't been an ordinary day - I feel like I DO know... I know I've done enough that one more thing isn't in the cards that day.

My vestibular/visual systems have to put in extra effort, which can be tiring, even draining... I don't want to get into brain fog/sensory overload territory... I often feel like I'm trying to find a balance between remaining hopeful, but also being realistic.

I'm learning that living MY life to the fullest has a different meaning now... so I need to forgive myself not just for mistakes, but simply for getting sick... the truth is, bad things happen.  Period... I didn't deserve this, nor is it my fault - I make myself remember 2 phrases I've heard a lot lately -

1) do the best you can in this moment

2) keep going

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June 13th, 2018 Still recovering...

By | Published Wednesday, June 13, 2018


I spoke with a friend who had a bad experience with a functional doctor, and I remembered an experience of my own... I don't remember who gave me her name, but I went to a functional nutritionist - one whose name I later found out was being given out by my new PCP (whom I like) because no one ever gave my PCP feedback... well, *I* did.

I saw this nutritionist after getting my MAV diagnosis - I called ahead to see if she treated people with migraine conditions, and was told "yes..." so off I went... I had one long consultation, and was told I could do an expensive blood test that would give me all the answers... and, yes, I fell for it.  What I FINALLY realize is that after everything I'd already BEEN  through, of COURSE I did it - what a relief to do ONE test, and then have this nutritionist who'd been recommended to me, give me answers!

During my follow up, she claimed I had "the worst case of leaky gut (I've) she'd ever seen..." and I left, with my husband, feeling TOTALLY overwhelmed... the one lucky thing was that I had an appointment with my then therapist, Dr. Glad, shortly after who said simply "she's telling you to make way too many changes too quickly, of course you're having trouble..." 

 I stopped sending the nutritionist e-mails, just stopped everything.  The nutritionist had recommended extreme dietary changes, some of which seemed to have nothing to do with my migraine condition.  I was having significant GI problems as a result.  I went instead to a registered dietitian at Lake Forest Hospital, who explained some basics, such as reacting to foods with tannins, and/or fermentation (about 6 spices, yeast, MSG and its' "relatives," cheese, and vinegar to name a few), and started to recover.  

 Unfortunately, due to my Anxiety/PTSD, I still, 5 1/2 years later, have to deal with getting my diet back to where I think I ultimately will stay... I have many real migraine food triggers, as well as some other health issues which restrict my diet... but with Christina's (CBT therapist) help, I hope to eventually make some changes in a gradual, methodical way... I've said it before, I'll say it again - it's been a long, long road...




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