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.

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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..

Wednesday, April 4, 2018

Purple Pill


Here's the thing about this illness; every choice is an unknown entity and I'm not a high risk player. (Side note I  just watched Molly's Game - recommend)  I recently decided to consult a second doctor; for one reason he does concierge medicine - and hell who doesn't love a concierge I can pretend I'm at the Four Seasons doing spa medicine.  Also, because I trust him - not him necessarily as a doctor yet - him as the person which in this maze is in my opinion a pretty close tie of importance.  What I mean is I trust he understands how complicated it is, I trust he understands the emotional toll this illness takes, I trust he understands how conflicted I feel that I won't be discussing this with my current doctor and I trust he has continually evolved as a doctor since we last crossed paths.  I also trust that sometimes as my dear late friend and doctor and massage client once said, "is it a test or is it a sign?"  And I'm trusting my gut that the serendipitous way we re-connected was a sign that it was time.

But here I sit for the second night in a row with this little purple pill in my hand feeling like Keanu Reeves in the Matrix, wishing I was staring at Lawrence Fishburne with my face reflecting  in his sunglasses urging me to take the little purple pill; here's the thing there isn't another option in my left hand.  Just the purple pill in my right.

But first how I re-connected with the second opinion  doctor then back to the little purple pill.  I was helping a fellow CFS/ME patient trying to recruit attendees to the Tempe, AZ screening of Unrest that she was hosting.  She asked / I offered to contact my alma mater SCNM to encourage Naturopathic Medical students and faculty to attend.  I had heard an old colleague was working back at the school, I emailed him - he emailed me who he thought best to contact we exchanged pleasantries - period end of story.  End of story meaning my school showed zero, zip, nada, interest in cooperating with such request.  Oh, I'm sure if you ask they will pretend no one contacted them; yada yada moving on….about a month ago the same person contacted me and said, "Did you see that SCNM is HOSTING UNREST."  I replied - not shocked I'm sure they heard Univ. of Arizona Medical Center is hosting in their Phoenix location and now they don't want to miss out.  I shoot out an email to the same colleague asking if he knew who was hosting Unrest at SCNM and he said he had resigned and was back in private practice…concierge medicine and also an office in renovation close to my home.  

Test or a sign?  I don't know that's why I'm still staring at the little purple pill like its the biggest life decision I've made.  And perhaps in some weird way it is - because it feels on some level like the first decision I've been well enough to make which ironically I have my current doctor to thank for.  In the beginning this was all such a blur I wasn't really making decisions they were just being made.  I was so lost, the doctors I was consulting were worse than lost they were arrogant and wrong that for 3 years I just kept moving and being told I wasn't sick while getting sicker.  My current doctor was the first to say you are a very sick person and I believe you.  That is powerful, that is a life line and that is hard to tether away from…but I've stalled.  I've stalled and that is no one's fault and maybe it’s not a stall it’s an as good as it gets situation.   However,  my current doctor sees one path and she would disagree with the path I'm considering…and here's the catch - no one knows - the only thing that will give me the answer is to take what feels like the very unsafe untraveled road because I haven't taken it before.  It could be disastrous as anyone with this illness knows - wrong moves are like playing chess - well I'm trying to learn chess and I don't get it - but a 9 year old is trying to teach me.  Point being I'm on the safe road right now and I've been getting really good at it - and that's the unknown - is the safe road the correct road or am I missing the chance at improving by taking the back roads?

The little purple pill is "just" Low Dose Naltrexone- everyone is doing it …. but I haven't.  I'm not in a body that anyone really understands and what is working for a lot of people doesn't work for all people.  What's the risk in trying….everything.  Or that's at least how it feels.  Going against the advice of your doctor for 9 years.  I told someone the other day the old saying don't make decisions out of fear.  This is where I feel a bit catch 22…this fear it isn't made up - it's real - it has merit but it also could have rewards.  What am I willing to risk in order to gain?  I told my new consult doctor if you laid on the table the promise that what you are recommending could give me 5 years of my pre sick life.  5 years of not having to worry about what food I ingested, the opportunity to travel and have my nieces and nephew see my old life and participate fully in theirs, if I could go see where all my friends lived, if I could feel that freedom of living again or I could live til 90 like this…my gut is to take the 5 years.  That's an awful position to be put in; and I know I'm not the only person that has been backed into that corner - the one of looking at a life before and a life after…and this damn little purple pill it's not just the pill it's a new leap of faith that there is still some hope to get back what I had.

As I was getting a saline IV today the assistant to the new doctor said okay take a deep breath in and let it out…she was afraid she would hurt me and I kind of laughed and said being poked more than once is really not a big deal.  My hand was squeezing one of those little stress balls to pump your vein up and my head was turned and I said to her, can I let go…she said yes.  I replied I suppose I should take that both literally and figuratively.  

Time to let go.  I have no idea what the right choice or wrong choice is - no one knows.  I know the reason I'm not taking the little pill sitting on my bedside table is fear.  Fear that I've handled what I've done can I handle getting worse if this backfires?  But at the end of the day I said I would try for those 5 years…there is only one way to know.

Today is the 50th Anniversary of the assassination of Dr. Martin Luther King…and as I'm writing that realize that he too said the something similar about something much bigger than himself…this illness is much bigger than myself, all of us - every single patient like many illnesses before and many unknowns have taken risks - we are our own guinea pigs right now - we are communicating the science waiting for the science to catch up to us, we have all been blessed with living the life of the promised land the life in a body that free will gave you choices and something took those choices away.  We as a community have rallied together around each other and shared our experiences - we have been marginalized, maligned, and through the collective voices of the Internet gave us a voice.   

It scares me more knowing that after that sermon on April 3, 1968 it was a prophecy to his murder, and I will go back to my dear late friend Kate Hart - is it a test or is it a sign and I choose a test.  A test do you have what it takes to dig beyond the fear of the unknown when the reward could be the removal of the shackles you have adjusted to live with.  I have no clue what the blue or red pill did in the matrix but I know this little purple pill means not giving up…choosing the road I haven't traveled that in of itself feels a little like my pre sick self.

This post is dedicated to Sue Jackson for her amazing blog Live with CFS where I re read all of her LDN posts.  It's dedicated to all the patients on the FB groups that support one another.  It's dedicated to my nieces and nephew - they give me a reason to choose the unknown.  

This post was also written with sweaty palms a pounding heart and also gave me courage to not feel so alone - knowing that others reading have been in this very same bind and others I have read gave me the nerve to try.  It's time to let go -  I swallowed the pill.

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