Tuesday, February 16, 2016

“Fall seven times and stand up eight.”


      I fell today.  We fell today.  As always we will stand back up and move on with life, but days like today make me wanna lie in bed and not stand up again. 

      Everything about the medical field makes me mad.  The monopoly they have on me, the costs of things, the time it takes to get answers.  I really want to scream!!!   I bombed a physical I have to have for work.  I have three months to get further testing that can go from hundreds of dollars to thousands.  Braydon had another absence seizure today that lasted longer than his normal seizures.  I really just want to scream.  I try so hard to pretend that things don't bother me, I really do.  But tonight I am defeated and bothered. 

     So lets start with B, I really have no desire to discuss my issues.  Its a STUPID issue and the government has stepped into my health care and is trying to force me to get testing I don't need.  Yeah I'm a little angry!!  So back to B....

     Got a call around 1.  He had an absence seizure that lasted over a minute.  I decided today to send him back to class (normally I pick him up) because if he is going to increase in seizure activity we are going to have to learn to adjust to it.  Unfortunately I feel like I made the wrong decision. 

     He told me walking back to the room he was extremely disoriented and struggled to walk, he couldn't get his feet to work he said.  They wouldn't go one in front of the other.  His heart rate has been elevated since he got home from school.  He was extremely tired and struggled to get back to normal after the seizure. 

     His grand mal's are normally 1-2 minutes but his absence are usually less than 20 seconds.  This one was noted at over a minute.  So I think his body is worn down and exhausted from today's seizure.  This just sucks..... a lot.  His Neurologist is worried his body is amping up for a big one and that sucks even more if it is true.  He can only go up another 500mg in meds.  He taps out at 4000mg and he is currently at 3500mg.  This is the only medication that does not affect the liver and the kidneys. 

    I just want to scream.

     But I wont.  I will plaster a smile on my face and move on just like all the other times.  I will continue to worry about him almost every minute of everyday. 

    Today just sucked.  But I am sure tomorrow will be better. 
     I'm angry today and this is just not fair.  He is such a good kid and does not deserve this.  I know I'm most upset at myself for not going to pick him up, I should have.  But we also have to live a normal life or as close to one as we can. 
    Let's hope tomorrow I can say B is seizure free for one day, next week I can say a week and so on. It will get better, I know.