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More Travel Quotes: http://www.movemequotes.com/tag/travel/

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You know you have had too many tests when?.....

I feel asleep during my MRI.  In fact I think I should get an A, or a gold star, something. I have a masters degree in medical testing.  Once I had to argue with the head of radiology, I needed Brain, Cervical and Thoracic MRI’s with and without contrast.  The problem was the hospital wanted to do them separately because people couldn’t tolerate laying still for that long however my insurance charges $200 for each Study, meaning that if they would do all in one shot it would save me $400.  I convinced him with my fast experience. And it did kind of suck but it was worth the $400 that I didn’t have. 

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Redemption! Sort of

I had just about given up on this tumblr thing (after like a minute) when my only followers were porn sites. But now I see someone actually liked a post. It’s the little things!

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woah i was really fuckin nervous because i realised i had an incoming deadline and i was like ‘i should get on that’ and then i had three drinks to relax myself cos i was too self-consicous to write. and you know what? now i’m just drunk and tense 

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Can you imagine if an internet connection was established between different worlds and suddenly people from different universes could communicate with each other

Someone makes a post complaining about how “an asshole at work today didn’t trim his dragon’s claws and now the floor is scratched” and someone else is like WAIT YOUR WORLD HAS DRAGONS EXPLAIN and OP ends up explaining what he sees as his boring everyday dragon job to all these strangers who think it’s the coolest thing ever

An elf from your average high fantasy world chats with a robot from a sci-fi universe and discovers that it doesn’t matter that he’s horrible with a bow and arrow because it turns out he’s really good at this thing called astrophysics

“What do you mean your people are suffering because the king got killed and everything’s falling apart? Here, I’ll send you info about the basics of our different governments. Go restructure your economy.”

The blending of different cultures. The discussion of different types of magic. Ideas about fusing science and magic. The sharing of technologies. Lives being saved because zombie-apocalypse-world is giving nuclear-apocalypse world survival tips or that one centaur told an alien about a new medical treatment.

inter-dimensional social media

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My MS journeys Part 4?

So completely blind in one eye  (yep I was anxious now) off we headed to an ophthalmologist. Why not a neurologist you ask? Because we had no idea it was connected, I had never heard of Optic Neuritis before.  The doctor looks though his whatever you call it and says Ohhh, Wow, mmm like he is really exited (this BTW is never a good sign at any doctors).  He grabs my husband who honestly was half thinking that I was hallucinating or exaggerating at best to show him the optic nerve. Evidently what he saw as enough to convince him it was not good.

So not happy with the 1st Neuro who diagnosed me with anxiety we found another one.  He repeated the MRI and lucky me, yup now I had Multiple, Multiple Sclerosis.  But at least it wasn’t cancer. thus began my love hate relationship with Steroids.  A nurse came to our apartment three days in a row to administer an IV full of Steroids with the aim of reducing the inflammation in the optic nerve and saving my eyesight. It took a leave from work (guess what if you can’t see in your peripheral vision you can’t drive a car) and a lot of anger and fear, my best friend driving from 5 states away with a bag full of audio books (which about broke me down). We were also looking to buy a house at the time and I was not sure what type of accommodations this disease was going to need. But after about 6 months I mostly had my vision back.

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Optic Neuritis

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My MS Journeys Part 3?

So after going home at Christmas with a wait and see approach and hoping I did not have Inoperable Cancer, just about 3 weeks later I noticed my left eye was seeing strangely.  Now as I have mentioned I am a chronic reader. Over 200 books each year, but as I looked at the pages the outer ring of my vision seemed blurry.  Within a few hours the blurry turned to darkness and the outer edges gradually but steadily took my left eyesight totally. It was time to panic now. 

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Optic Neuritis

A Nightmare for a Chronic Reader or anyone else.

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my MS Journeys part 2

When I last left you gentle reader it was the winter of 2000.  Christmas Eve actually. So realizing that the whole numbness feeling seemed to be growing and with my mothers concerns in mind (My brother had been diagnosed with MS 2 years prior, presenting with numbness,at the time I thought this meant I was less likely to get it).

Anyhow, my husband happened to work in an office with a traveling neurologist who agreed to see me that same day on Christmas Eve. So off we headed. After a very thorough exam which all I remember about is him using the pinwheel and poking my numb area (mid chest down through torso)I couldn’t feel a thing btw.

He got all serious and exclaimed “I know what you have..it’s Anxiety!”

I said, um Doctor, I have been anxious before in my life you know I don’t think that is what this is (the beginning of a long history of questioning doctors (which I strongly recommend).  So he reluctantly agreed to send me for an MRI. Sure enough right at the base of my head something shows up.  He tells me that it is either 1) a tumor inside my spinal cord which would not be operable or 2) MS which they cannot diagnose until you have MULTIPLE plaques or scars. I will say clearly I was hoping for the MS diagnosis at that point. So off we went home and Merry Christmas / Happy New Year. 

Little did I know how soon I was going to get an answer. (which BTW any quick answer is a blessing as people wait years sometimes for a diagnosis.)

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Ditto

The Other Side of Your Unsolicited Health Advice

TW: health, illness, weight loss/gain You should try yoga! I risk dislocation with the slightest movement and certain positions can make me injure myself or pass out.

You should travel farther to see specialists! For the time being I do not have the money to even get the basic care that I need, much less travel. You should lose/gain weight! My illness has caused me to lose/gain weight, my medication that is keeping me stable has caused me to lose/gain weight, my body is in too much pain or too fragile for physical fitness, I need to eat certain foods so I don’t pass out, I need to eat certain foods because it is what I can afford. You should try meditation and positive thinking! If your body is collapsing underneath your skin, all the meditation and positive thinking in the world will not stop the pain, will not stop it from happening. You’ll never get better if you don’t [physically] push yourself! What makes you think I don’t push myself every day that I breathe? Every day that I’m still here? Pushing myself beyond what I can do does not improve the symptoms of my illness, in fact will just cause me more pain, and maybe even cause myself physical injury. Tea and herbs help cure everything. Not everything.

Don’t worry, you’ll find a cure. There isn’t one, there may not ever be one, and it’s not my top priority in comparison to living the best life I can at this very moment, sick or not. To my non-sick loved ones: I’ve heard these suggestions a million times already, when people find out I’m chronically ill or even when I’m out in public in my wheelchair, total strangers feel entitled to approach me and tell me how I should be living my life and the decisions I should be making for my body, so please stop using my illness and unsolicited health advice as a way to connect with me. Can we just talk about other things? Can you NOT participate in the endless carousel, the montage of people that condescend to me and try to tell me what to do with my body? Can you be my friend even if I never get better? Talk to me, but talk to me in a non-infantilizing or condescending way about my body and my medical journey. Talk to me about pretty much anything else.

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This is getting out of hand, even Shkreli has commented 

follow @the-future-now

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Christmas?

It’s not even labor day and the Christmas stamps are out?

Gee I’m just trying to get through one day at a time.

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Beautiful!

One more #shelfie.

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Rant

On another rant, you could just throw a dart, spin the wheel and close your eyes to see what disease of mine causes what symptoms.

Here is an example from yesterday.  I have been sleeping like crap for a few weeks, might be related to the new Aubagio, or the new Valium, or the full moon etc. So Monday night I went to bed at 8:30pm.  I woke up at 12:30 pm ( which sucked as it was a beautiful day temperature wise @ 75.) So anyway I think well I must have extra spoons I should really clean the bathtub. Which in hindsight takes all my spoons but moving along - I was scrubbing away when I got this God awful pain in my chest, right over the breastbone. So here are my thoughts not necessarily in order: I am having a heart attack, no one is home well at least the bathroom will be clean when they find me..hmmm I haven’t died yet maybe its a drug reaction from the Aubagio/Valium/Amitryptaline/levothyroxine/plaquenil combination. Or it could be anxiety.  Did I ever tell the Walmart pharmacist I was on Aubagio from the specialty pharmacy?  Or it could be because I stopped tizadine. Maybe a reaction with the wine last night (no of course not lol). Hmm still haven’t died..I’ve got it the cancer came back to my thyroid bed and is taking over my throat, fuck.

Eventually kind readers I realize the most obvious choice from my history and deduction is esophageal spams have returned. Phew, I am totally out of spoons.

It’s not paranoid if the diseases are out to get you.

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Dumb Things Doctors Say

Here’s just a couple I’ve heard:

“Well when it rains it pours” (from the doctor calling me yes CALLING ME to tell me I had cancer.)

BTW MS folks, yes Cancer trumps MS in treatment priority.

Another favorite is the “This is your new normal”. (look mutherfucker you didn’t know me before this shit happened but nothing about this is normal. Next!)

Feel free to chime in Tumblrs and Spoonies

Dumbest things heard from doctors?

PS I love my Doctors but finding good ones is like blind dating.

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Nirvana

Battery Park Book Exchange and Champagne Bar 

Asheville, NC