After 3 years 3 brain surgeries and so many medications I have forgotten the names of more of them then I remember, I am finally having my SSDI hearing on June 16th!! I will travel to Reno on the 15th, have my hearing the 16th, and come home on the 17th. My lawyer and I will be having a lengthy discussion before that, but I am almost dreading the emotional toll this is going to have on me. All 5 of my post op seizures have been stress induced.

The thought of trying to tell someone who doesn’t know me, who has to determine my future, why I cant work though I “look” perfectly normal freaks me out. The reality is it really is “all in my head” and all in those pill bottles I open morning and night!! Well-partially in my head-since part of what has caused this they took out-which is part of what has caused the problem! A head that my husband and I have come to realize will forever be different emotionally and mentally–but that I can maybe learn to deal with if I can control my environment and the number of “boxes” and people I surround myself with. How can someone who has never experienced that decide my future for me in one meeting?

Everyone I know has realized that I cannot deal with anything outside the “norm” anything outside my “schedule” anything that happens that “rattles me”. The more that I have going on in my life the more likely that is to happen. The more people I have to deal with the more likely that is to happen. The more it happens the worse my side effects-and the worse I react-the worse the cycle becomes. Yet on the 16th I will go to this meeting with my lawyer and we will present all the information we have and then I will wait to see what this person determines about my life.

My standing on this–I know that in the past the Lord has taken care of me–The lord has done what I have needed in my life–The Lord has always been faithful to His promises. I have no doubt that in this situation the same thing is going to happen. I will do what I need to do and I will leave the rest in His hands because I know that regardless of what one person may decide, the Lord is still on His throne and still in charge of my life.

For me having another medical condition seems to come as often as some woman have children! I only have one child, but have managed to have more medical conditions than anyone I know.  So now there are two more I will add to the list of names I recite when I go to the Dr. and they ask my medical history.  Its quite interesting the looks I get when I start reciting my list.

As it turned out the pain I was having in my face and jaw since my surgery over a year ago was caused by a nerve that controls those areas.  It is very sensitive to any damage-and it was most likely damaged during surgery-very easy to have happen given that the entire side of my head was exposed!  So now those sharp shooting pains are going away with treatment!  All the pain isn’t gone-but it is bearable, but I have a name for what causes it- Trigeminal Neuralgia.

Then it seems this thing that a few weeks ago the Dr. said was something not to worry too much about, a minor annoyance more than anything, has been getting progressively worse over the past couple of weeks.  Then yesterday-much worse.  You see, my hands and feet turn blue, and not a nice bright shade of blue like my eyes.  A creepy blue grey, the color they would be if you were out in the snow too long-my body is having that same reaction but the problem is there is no snow involved.  Seems there can be several underlying causes for this, none of which sound very fun to have, two of which were already ruled out, the rest of which I discovered yesterday.  So I wait for the Dr. to call me back to see what to do next.  However I do have a name for this as well-Raynauds Syndrome.

So two names to add my list.  It is getting rather long, I might have to start writing all these down for fear of forgetting which is which and calling them by their wrong name, like when a mother starts calling her children by the wrong name.  I do know one mom who has been known to call her children by their number-maybe I should start doing that-numbering my medical conditions so as not to confuse them.  Regardless of what I call them by they are all just another way my perishable body is showing signs of being just that, perishable.  I will one day be made imperishable when I inherit the Kingdom of God! (1 Cor 15:44, 1 Cor 15:50)

2 minutes that sets me back 6 1/2 months.  How does that work?  6 1/2 months ago I had my 4th post operative seizure which reset my 90 day count to get my driving privileges back.  Then-90 days later I accomplished that milestone and got my drivers license back after having not driven for over 2 years!  Yesterday that 90 day count started again-so I step backwards and start counting again.  Though I regained my driving privilege in December-I lost it yesterday in the very short span of 2 minutes when I had my 5th post operative seizure.

For those of us with epilepsy driving becomes more than an ordinary privilege, it is a trophy.  It is the proof that we are seizure free, and that we have defeated our condition.  If we have a seizure again we lose that privilege and we are reminded every day for the time period set by the law that for a short period of time-2 minutes in this case-our disease defeated us and all the steps we take to beat it.  This daily reminder for me is more than just an “I cant drive” or “I had a seizure” reminder.  It reminds me that it matters not what attempts I make to fix this body, to make it last, to put it in perfect condition-that is not going to happen!  Even if I get to the point where I become seizure free for life-my body will still not be imperishable.  So I am thankful.  Thankful for what?  Thankful that this is not the body that I am going to keep for eternity.  God is going to give me an imperishable body when I inherit the Kingdom of God. (1 Cor 15:44, 1 Cor 15:50)

So that 2 minutes sets me backwards.  I will once again have to rely on others to drive me everywhere.  I will not be able to hop in the car in the middle of the day to go to the grocery store.  My husband will need to take his break at the appropriate times to get our son home from school again.  I will have more to be thankful for when I no longer have this body!