The patient Patient

You've heard the old joke from a spry old chap in the waiting room at the doctor’s office, "now I know why they call us Patients" followed by an air rib jab, an "eh?", and chuckles that confirm the multiple number of times he's said that same thing in that very room. 

But lord have mercy that little stooped feller probably named Jasper had it right! If we are mere minutes late for our appointment they read us the late/cancellation policy that's posted in hard to miss locations and that we've signed dozens of times. But! We all know their schedules are as loosey goosey as... Well... A loose goose! Yikes! 

I have been forced to be a “patient patient” a lot lately. I have been in IC treatment purgatory for the last month and I am about to start spitting! (Apparently people spit where they're mad? I've never personally seen it except by Daffy Duck but you never know who I might turn into when my kettle gets cookin'... Or maybe a llama but I think they always spit no matter their mood.) 

My beloved doctor has mentioned this new treatment she's been thinking about trying with me for the last few months but since it’s what she referred to as "an end stage treatment" she wanted to be sure she had exhausted all of our other options. The treatment is a medication called Cyclosporine and it’s an immunosuppressant. 

The last time I was at her office feeling a bit defeated and a bit fat from the stupid amitriptyline she realized it was probably time to move to the next step. She handed me a green file (which reminded me of a peachy, who's with me?) that had a checklist of things to do before we could start the medication. 

Let me remind you of my severe lack of medical knowledge and my Internet exclusive education on most IC related topics. Please bear with me as we trudge through the muddy next few paragraphs.  Here we go!

There are some theories that IC is an autoimmune disease. Which I think means our bodies are attacking themselves! Therefore suppressing some of the immune system could hypothetically, potentially, maybe, possibly, help our IC symptoms! 

However we need our immune systems to fight off any bad things that might enter our bodies like infections and germs. So inside that peachy like folder they have a whole protocol with 6 steps that you have to go through before you can start this hardcore drug.

Step 1, receive clearance from your primary care doctor ensuring that you don't have any kidney or liver impairment, uncontrolled high blood pressure or infections, immunodeficiency or any malignancy within 5 years. (Which I don’t have any of those things thankfully!)

Step 2, you must receive the Zoster vaccine. (I don’t need this because I had shingles last year… yes I acknowledge shingles are for old people… tell my body that!)

Step 3, document baseline blood pressure and blood work. (I always have perfect blood pressure, not to brag or any thing.)

Step 4, fill out a bunch of questionnaires about IC symptoms. (I secretly love filling out forms, especially if it’s the kind with the bubbles that you have to fill in with a #2 pencil!)

Step 5, read a bunch of info about the drug and IC. (I apparently haven’t read enough about IC over the last 12 years.)

Step 6, sign the consent form. (After 4 ½ years of marriage I still can’t get my new signature down, it’s just so long my hand cramps half way through.)

SO I have completed step 1-3 and am waiting to hear what to do next from my urologist. I guess I should just fill out the forms and read the papers… hmm one would think I would have figured that out before now… Either way, I am waiting to hear if they got the results from the blood work and if we’re going to move forward in the process.

Meanwhile my new primary care doctor referred me to a pain management specialist. They have sent in the referral two times and I've called two times as well but the pain doctor’s office keeps saying they haven't received any thing. So my doctor’s office is sending it again... Then when they do finally get it they will probably be booked several months out and I’ll wind up patiently waiting for my appointment day to arrive.

So I wait. Do you know how patient I am? Not at all. Ask my sister. (Pretty much any time you are weary and wondering if I'm really as whackadoodle as this blog portrays me to be my sister is a great witness! Oh and also she has lovely ears for flopping if that helps you in a flare, maybe not as floppish as my Moms but definitely 2nd best. Surely I'm not the only one that flops their loved ones ears when they're hurting! Oh, I am? Weird.)

Anyway again! (Oh boy this is a random blog post! What was in that licorice I just consumed! Oh and speaking of that I'm still on the amitriptyline and still gorging away. Only 5 days left! I don't even want to know what weight I am at!)

A-n-y-w-a-y... I'll be here being the perfectly patient patient if anyone needs me... Just doing some whittling or whatever patient people do... Let’s be honest I’ll probably be eating and watching reality TV… (Am I the only one that cannot stand Tierra on the Bachelor?)