The Day I Prayed

I'm not even sure where to begin this story. I haven't written in 5 weeks it says. Yeah, guess I can understand why--my mind has been full, to say the least.

So several posts ago I mentioned that I was struggling w/ my eyes...it started back in January of this year where I noticed my eyes were straining more, sensitive to light, and blinking more. I figured well, makes sense, I just turned 40, and that's when things start going south. I just didn't let it bother me too much thinking it would go away when my eyes adjusted. It didn't.
Over the next several months I noticed it getting worse and I was rubbing my eyes more, a lot more strain and eye fatigue. I just started my new job in April and changed insurance so figured I should get them checked out by an ophthalmologist. He was kind of a jerk, took less than 2 minutes with me, and said I just needed reading glasses. Wasn't really interested in hearing more about how bothersome they were. Mind you I could read 20/20 in the office.
Shortly after that visit I noticed my eyelids "sticking" shut...I would blink and they would stay shut an extra second or two. I also felt like I had to lift my eyebrow to will them back open sometimes--like spasms in my eyelids.  As you can imagine, think about driving and your eyes want to close, and sometimes did w/ out you wanting them to. Scary stuff.  I started driving with my finger holding my eyelid open to make sure it wouldn't close. I noticed I was keeping my eyes closed more and more at work when I was walking because of the blinking/eye fatigue and would almost run into things. I also had to tell my coworkers and some of my clients that I was having eye issues and not winking at them.  Very scary stuff so I decided to call our company nurse line and ask what kind of Dr. I should see because it wasn't letting up. They suggested a neuro-ophthalmologist.
So, about a month ago I go see one in our big city medical center.....they ran a bunch of eye tests on me (tested peripheral vision, etc.) asked me if I had eye pain, numbness, tingling, loss of vision, blurred vision etc.. The only symptom I had was this eye "thing". No numbness, no loss of vision, etc.. just this. So, after all the testing the Dr. says she thought I had bl.eph.arospasm. It's a benign condition with an unknown cause and how it's treated is with bo.t.ox in your eyelids every 3-4 months.  She referred me to a specialist who handles many/many of these cases. I make an eye appointment with said Dr. and of course next appointment a few months out. I called regularly and was able to get in much sooner (about 2-3 weeks ago).

After all of the insurance rigamaroll to get these injections approved and all the medical records sent over, etc..I finally get in to see this Dr.  The nurse comes in and gets my history, says hang on Dr. in soon.
Doctor comes in and sits on his stool, reads me the chart of my history and I told him it all sounds right. He sits back and looks at me some more, making me sort of nervous, uh, why is he staring at me?
In less than two minutes he sits back and says:

I don't think you have bl.eph.arospas.m.

I think you have (insert debilitating disease here). I don't even want to type it, I shudder thinking about it.

My blood ran cold. I don't know if that's the feeling of true fear...but my breathing almost stopped, I had a rush of coolness quickly was over my entire body, all the way to the tips of my finger and toes. My stomach dropped to the bottom floor of the building. I just sat there. My mind quickly started envisioning crumpled people in wheelchairs and then I saw my children's faces.  I just started crying. Crying and crying. I couldn't really speak.
He put his hand on my leg and tried to comfort me and then asks if he could bring some people in the room.  I said sure. I thought maybe he was getting a second opinion from another Dr. Nope, he brings in his fellows and asks them to see how I am blinking....watch how it is NOT blep.haro.spasm.
At this point I just say I am the mother of two small children....crying....crying.
He says I need to get an M.RI done and said I should go back to the neuro-opthalmologist. His fellow later told me that when he was in the hall he was frustrated w/ the other doctor (who he's worked regularly with) because this was obviously neuro, he told them.
I was in a complete, stunned, panic.  I called my neuro's office asking to speak to my Dr. right away and of course I had to leave a message for her to return call. Then sat in the car parking lot sobbing and feeling sick.

When I drove home I just couldn't think straight, holding my eye open with my finger not just because of the eye issue......the tears. And what greeted me when I got home? A workman was leaving my house--I stopped him and asked what the issue was, assuming he was checking a meter or something. He said he was there to turn off my gas, no payments had been received. W..T...F. I have never in my history of owning houses ever not paid my bills. No gas equals no hot water.

I had to just pull it together and go through our nightly routine....finally got baths (still had remaining hot water), teeth brushed, stories, etc. done and while my daughter was watching her show, I was rocking my son in his room, his cheek against my chest while feeding him his bottle. I looked down into his beautiful, innocent, amazing face......The tears welled up and spilled over on to his face. My mind racing and my heart squeezing and aching with thoughts about what I would do....how will I manage. My independence defines my spirit....if that were slowly taken away from me.....dear God. What about my children?.....
And from somewhere deep in me a prayer came out.

I said Lord, give me strength.


It took a few days to actually speak to the Dr.--ridiculousness. But, when I finally spoke to her I said exactly what the Dr. told me and she said that how I presented would be a very atypical presentation for this disease, but let's get the MR.I done quickly and just go from there. A day later I have the test done. However, it was done on a Friday and I wouldn't be able to get results from the Dr. until Monday.

I'm not sure even how to describe the weight/armor I felt I had surrounding my body. Breathing seemed more difficult and I just couldn't focus on much. I realize this sounds dramatic but frankly it was.

After waiting all weekend I go into her office--they re-do all of the tests they did the first time. I start thinking...okay, if it's bad news why would they put me through the wringer w/ these additional tests....start getting hopeful. She had an actual Neurologist doing rotation w/ her so he came in first. He started going through my chart, going through the same types of questions before...no, no numbness, tingling, I can see just fine, no eye pain, etc.. Then he pulls out the MR.I and says it's.......
NORMAL.
Normal.
Dear any higher power out there.....thank you.

Then my mind starts racing....wait a minute.....why on EARTH would a Dr. who saw me for less than 5 minutes drop a complete bomb and say I had this debilitating disease only to have it not confirmed w/ an actual diagnostic test? Wouldn't a Dr. say, Hey patient, I'd like to get a few more tests done to rule out other things...why don't we schedule you for some additional testing?  I had been tirelessly researching the Inter.net about the disease and now shifted to, is there anything you can do legally to a Dr. who gives you wrong diagnosis....(not really). I forgot to mention that the Friday before I got the results the Dr.'s nurse called me and said I should check w/ my regular Dr. as well because it could be another disorder I should ask about.....ummmm....what? Why on earth wouldn't he have initially told me in his office he thought it could be this OR this....not, you have this, period.

Then I started getting mad. REALLY mad. So mad that I called the Dr's office who dropped the bomb and said I wanted to speak with him, and had to leave a message, of course.  He called me back that evening and I asked him if he had spoken to my neuro i.e. the clear MR.I. I wanted to know how he would explain giving me this diagnosis that the test doesn't back up. I was expecting him to say he was sorry, shouldn't have done that, whatever.....but he goes on to say, well, it may not have shown up in the test, but it could still be a clinical diagnosis.  I didn't even know what that meant other than he just put doubt back in my head when the other Dr. had just taken it out.  I looked up online what clinical diagnosis meant and it just means a diagnosis based on symptoms presented versus confirmation via diagnostic testing.
After that call I was so confused.

The next day I called my regular neuro-op back (just last week) because I wanted to understand how he could still be saying this....the Dr. didn't call me back but her nurse did and she said that the Dr. said it was unlikely, but that's why she had referred me to see a general neurologist. That would be the appropriate Dr. to do further testing, confirm, rule out, etc..

Of course that general neuro in one of the city's highly regarded institute's next available appointment--November 19th.  I called around trying to figure out if I should just go to a different institute/Dr. etc and for some reason wait times for a remotely recommended Dr. in this field is at least a month.
I decided I would rather wait for what is supposed to be an excellent Dr. than go to a fly by night one just because they have an opening sooner.

So here I sit. The office told me to call everyday for cancellations, which I have.

It's hard to fully describe in writing what an emotional turmoil this last month or so has been. One of the worst parts about all of this......right after I left the tough appointment....I couldn't think of anyone locally to call. There really isn't anyone who is involved in our daily lives (other than nanny) that I could say, hey, come on over...I need a shoulder. I felt very, very alone.  These are the things you pick up the phone and tell your mom....or husband. Someone who can be a rock for you....not just emotionally, but physically as well.

The trauma has subsided...I am trying to just focus on waiting for the next Dr. appointment and more testing, etc. I am not researching anymore because it just gets me anxious. I'd like to think that after all of this I may just have ble.pharospasm after all....or some other benign deal that is treatable and able to be helped somehow. It's interesting because some days are better than others and some days my eyes feel like they want to shut and "stick" that way half the day, with driving anytime and end of the day being the worst. If I am talking to someone I have to really concentrate to keep my eyes blinking somewhat 'normally' so it isn't so noticeable.

I have a lot to update on the kiddos---we had a first birthday! but think I'll just leave this post for now.