Seems like forever ago, but that is where my journey begins. I have decided to write about it to be able to share it, so I don't have to try and remember what I have told what to. And because....and this I find this very disturbing, I may not remember it. So I am making a reminder for me. 

Please remember I am not a writer.

Tuesday Aug 6th

I am finally getting somewhere, I have met with a new Neurologist for a second time and they have promised the tired, teary eyed me that we are going to find out what is wrong.

“So why are you here, have they told you about your MRI results?” I am seeing a Rheumatologist. He is referring to the MRI or brain scan as they called it when they called to confirm. I just had this test the previous week.

“No” and I am not seeing the Neurologist until 1:30!!!

He goes on to explain that there are areas of concern, but he does not know how to read it properly. I feel bad for him he looks uncomfortable, but is smiling. Image after image he is pausing, he is not sure. I have decided that is okay. I can wait for the Neurologist, although a part of me waits for him to suddenly, miraculously be able to read it properly.

After two years of not knowing why I had extreme headaches which faded away over time and now I am left with a sore and bumpy scalp, why my shoulders end up so tight that I can't move, or why the shooting pain in my knee is so extreme it brings me to tears and has lasted for up to 12 hours, the occasional pain in my arms. Two years ago I had also decided to start exercising and developed a great liking of running for the first time in my life. The thought had occurred to me that this is what damaged me, somehow I had hurt my spine. Is this also why at the ripe old age of 43 my vision has gone to shit at a rate of what seems to be overnight? All the thoughts run through my mind like a muddled mess.

Tumor? Don’t know.

Glance at Hubby, I am tearing up because in those big blue eyes looking back at me is everything that I am feeling. Fear of the unknown. I could go on about how that one look said so much, but kinda hard to put into words, because me and him have been together soooo long, we don't need them. 

I have a BBQ to help run, a wedding to edit, a summer program to help lead. This is really bad timing.

Yes I really thought that. 

The Dr. continues the examination. “Push against my arms, lift up your legs, how old are your kids?”

Kids good grief the kids “20 and 16”

“I don’t think there is anything I can do for you, if after they are done, if you still have a problem with your knee I would be happy to see you about it”

Then that is it we are walking out of the Rheumatologist office 2 boxes of tissues and I am wearing my sunglasses indoors, still trying to comprehend what was said, what was not said. Areas of concern, well that would explain the Neurological symptoms, that is the only relieving thing about this visit. Maybe they did it, maybe they found out what is wrong, and now they just got to get it fixed.

Well now we have a 1.5 hour wait for the Neurological appointment.

The smell of coffee is reassuring, but actually having purchased it, it is gross. The strongest stuff in the world I don't like it reminds me of Starbucks (sorry Starbucks fans) it is way too strong. We don't say much, just sit in the chairs, trying not to jump to conclusions before we find out what is really going on. Maybe he did not know how to read it. But then I am reminded of the print out of the findings.......yeah something is there. No idea what to think say or do.

We check in for the neurologist appointment a half hour early, checked it and waiting. Still kind of numb, still kind of swallowing it back. Ed has finished his coffee he looks antsy. Mine is still gross, I won't be finishing it, but I will hold it and take sips hoping with each one it will start to taste better, it does not.

We are finally in at 3:00 ish, with an apology of running late. I go in tell them that yeah bumps are still there, right side still kind of hurts. Same looks, seems I am a bit of a curiosity. This is another neurologist with the one I had last time (thanking my lucky stars it was not the same one with her last time) asking the same questions, responding with “so it hurts where?” nodding, I can tell it does not make sense to them, I have been saying that for two years. One day fine the next day a mess, but really lately last six months or so not one day without something hurting, swelling. I have another bump forming in the middle of my forehead that one is only 3 weeks old and luckily it was not there when I came the first time, so the other neurologist knows, she knows it was not there.

Sigh.

But then he says something believe it or not it is the best thing I have heard in a couple of years, “you are not crazy” and the floodgates open!!! 

I am handed another box of tissues, this makes box number three. I am not leaving here with it. They are no good, they don't have lotion in them, they are very similar to sand paper.

So I am not crazy, well at least no more than my usual. But there is still the issue of the "areas of concern". He goes on to say again that the symptoms don't match, blood work shows nothing. He is going to refer me to a neurosurgeon to get a biopsy. "You will be fine, they will find out what is wrong. Do you mind if I peak, I am quite curious." Love the lady neurologist, and her accent, can't remember what country she said she was from probably doing her residency.

What will it hurt to have her look, in my book she earned the right, when she did not just shoo me away.

Finally we are on our way out, there is family to tell, I have to make arrangements at work as these appointments are being set up almost faster than I can keep track. But the only thing we learned is that there is something on the membrane of my brain, which is better than right on my brain.

Well that is what they said.

Mass on my membrane.

I think anything below your skull that should not be there, should not be there, whether or not it is touching the brain to me seems kind of trivial.

We can't find the car. Neither one of us can remember what floor we parked on.

 Really? 

Yes

It is the longest Tuesday ever.

~Ron Pope~"A Reason to Hope"

copy and paste to hear the song> http://www.youtube.com/watch?v=UBOb0e6HXbs