Wednesday, April 18, 2018

Empty Hand


I had some pictures to share, but my aol isn't loading…cue the "AOL" jokes….but the picture was or will be if I get it loaded of an empty hand.  The Purple Pill turned into a White Pill (same drug lower dosage) which turned into no pill.  As my doctor said, now let's not throw the baby out with the bathwater, to which I replied have we suddenly been transported to 1952 analogies?  So what happened?  I got worse.  Really worse, could not move worse. What normally happens…he said normally people don't' feel anything and then start gaining more energy.

So where too now…we wait.  We are messing with my thyroid in a different way, getting more IV's more injections, still going to my other doctor, waiting on new labs…what did I do…I called my dad and sobbed.  I really can't even type right now because I still feel like crying, well liar liar I am crying.  I tell myself - I am lucky some people their drugs don't work and it means they are going to die.  This is not the case, but lately this doesn't feel like living.  Thankfully, which I never do I reached out to a FB group and a kind gentlemen replied to me he felt awful on LDN also.  It just feels so defeating…I thought I had given no hope to this little purple pill, I swore I told myself we just will see, but that hope was there and when it failed I felt like I failed too.  The expenses - some people (well my grandfather but that's another story) have attorneys on retainer, I have doctors on retainer.

Text I sent my neighbor last night

And then I cried even more last night because I binged on 4 dresses and one pantsuit…well  I shopped the way I do planning on returning.  What I didn't plan on is not being able to button the dress and getting stuck in the pantsuit.  I'm not sure what has me more upset the Purple Pill or now a physical body I don't recognize that seems to have had a conference with gravity and gravity won.  Oh right on the list of things that are bad - my muffin top you would think is last on the list but it has moved right on top.  What can I do? I can't change my diet, I can't exercise and god damn you illness now I don't enjoy a box full of Diane Von Furstenburg dresses ….Fuck it all - at least jewelry doesn't care if your tummy has expanded.

View Home

This is Vasil...He's from Bulgaria his wife was an attorney there.  He drove me one day when I called the Biltmore Hotel in desperate need for a ride.  That was 3 years ago...Vasil is family.  I left the note because what he has given me is nothing compared to a dinner at the Wrigley. 

But through it all I was driving home yesterday from an awful blood draw and Vasil was driving me and I felt so grateful.  I have a lot of people I can cry too… I've done my best to make lemonade out of lemons…hopefully I can eat a lemon soon.  If this illness was as simple as a purple little pill then we would all not be blogging and making movies, and begging for funds… I tried, I may try it again once I'm maybe stronger but I don't have the what if I had on my shoulders that I hadn't.  And maybe today I will try on those dresses and not give a damn if my once flat stomach bulges a bit - no need to throw the baby out with the bath water.

Here's a few more pictures for the fun of it...and since AOL decided to cooperate and load...
Christine and Capri who has been hanging with us on Fridays

My hysterically funny wonderful new neighbor and Wonder Women's lasso she got at a charity function

My darling
The wedding in the background that Chrissy and I spent a good half hour w binoculars
and hysterically laughing as we came up with scenarios of whom was who...
Three hours later after this was first written got the photos to work…guess I wanted to show it's not all bad there are always moments of joy and nonsense and laughter….that help with the fear and the desperation..


  1. Your joy,humor and ability to make fun out of life inspires me. Your struggle saddens and humbles me but your sense of fun inspires.


Disqus for Festzeit