What do you do when you have no answer's? What do you do when get told exactly what you DON'T want to hear? Exactly- you can't do anything. You can't change the situation. You can't make it better. You can't rewind time and pretend nothing happened. Although-- that is EXACTLY what you want to do. You don't alway's get what you want in life now do you? I think anyone can relate to that in just about any practical way.
I've been battling-fighting-dealing- however you would like to uhm describe this journey of mine- thee newly increasing seizures now for over a year. I tend to compare my situation a lot- like there are a lot worse out there than me etc. Which I shouldn't do. But I do. I am for the most part a very optimistic- outgoing person. :) but this has kicked my butt for the past year. I have lost a lot-- physical crap of course. -- now Life-- it has yet to take any ounce of that from me. This week was a bummer. Im frustrated because I had my hopes and expectations that I shouldn't have had. Because I already knew the results before hand.
After Months of fighting for the MRI and ending up with a black eye after a seizure and losing my glasses- we finally got it done. Since EEG's weren't helping- this was the last draw for me. So Two weeks ago from this coming monday I went in for the MRI. I also went in to talk to a general Nuerologist. This big mouth of a Neurologist told me something that two other doctors have told me- Not just regular Medical Doctors but Epileptologist and their assistants all confirmed my worse nightmare-- Atrophy and Sclerosis to my Right Mesial Temporal Lobe. This Dude is telling me all this stuff about the weakness on the right side of my body and how I need to do this and that. Then preceeds to tell my that the right side of my body isn't due to my hippocampus but due to possible focal points deeper the left side of my brain. My Brain is far my broken than I thought. Then He is doing all his fun testing and I bring up the Atrophy thing again because I could see the look on His face as if He wasn't suppose to say anything- and He pretty much blew the question off and told me I probably should be re-admitted again soon to see how the seizures are and to try to get the focal points. This was just the neurologist. I wont lie laughed at Him told Him He was crazy. I could in no way do another hospitalization in the Epilepsy unit. Its not fair to me-- or anyone else who has to deal with me. I just can't do it. He then said- "well I am going to make a note of it to your doctor"
That appointment brought me to this past wednesday. I met with my original Doctor in the Epilepsy Center. I haven't seen her since November. She has been on maternity leave.
You see this appointment was a little bit different. I didn't have to go alone. I had someone who did understand. I had someone who did get what was going on. She works for the Epilepsy Association. I was so thankful. At first I was nervous- but I didn't want to walk in alone to this appointment I knew I would not end up well. Because I already knew had a feeling of how it was gonna go. I normally - shut down. In front of doctors. I don't really speak up at a certain point. I just kinda give up because they don't listen anyway. Im really bad at them alone. Gods truly given me grace multiple times with one DR who has stood up and fought for me. :/ Its been rough. But anyway She spoke up about a few things I didn't or would clarify things I would just throw the towel in on. But-- because there are no EEG changes- I have intractable non specific Epilepsy. Thank you DR. :/ - I already knew that. Because EEGs are so Hit and Miss. its hard to get a Grand Mal Seizure on them and auras are often to small to register sometimes. (so im told yet I have them all the time makes NO sense) She told me NOT to worry about my MRI that it doesnt really matter in my case because I am not have Grand Mal seizures all the time - everyday. YET when it comes to the point , thats when we worry- thats when we do more testing. I am a candidate for surgery- but were not even going to go that route until the bigger seizures start to increase. My initial reactions to that -- INCREASE?!?! -- Well at the rate that I'm at and the amount of drugs I've already failed- it could happen. For right now we did a med increase. because whatever is in the Drugs I am on now and the combination that I am on and when I decide that I sleep, eat, and workout CORRECTLY and listen to my body- I am seizure free atleast 3 days a week. Its very intermittent. BUT I won't complain. ( Atleast it was like this for a week so far) I am hoping as the med increase goes the changes happen smoothly with this med. by summer ill be on a higher dose do to the heat. but- im ok with that! Were hoping this keeps the monthly Grand mals Tamed for a while- and no ill side effects come from it. So far none except being extremely tired all the time and nauseous and not being able to eat much and random headaches but those are common. So Ive been a little overwhelmed and just not really sure how to deal with the news.
Then on my home from the hospital I was thinking. Thinking about God and the whys. and hows. whos. and my little friend Luke. and my friend Josh. and Kalissa, and Alyssa and Todd and just How can someone have to deal with this. Why cant we just be healed? I have personally seen a paralyzed girl get up and walk-- why can't we be healed. Why can't we get-- better? I just want to be better!? Heck I would be ok with even a solid answer. Just SOMETHING more.
I got home laid on my bed and cried. just cried. that cry that just lets everything out type cry? Then I thought-- then I prayed. Then God spoke. I was reminded that SO SO often we get so caught up in wanting aswers. Wanting something from God. and when we don't get it-- what do we do? We get mad. We get frustrated. Why? because were human. But what we Should do is just focus more on the Greatness of who He is. Not the answers, not what we have or what we dont have. But solely on who He is. His love, Grace, mercy, hope, strength, creation.
The one thing that Got me through the rest of that day was this-- that God, the Creator of the universe, the Creator of me who knows every fiber- every cell- every bone, every dying brain cell, every growing brain cell, He knows what is going on. He Loves me NO less and is Holding me. He is carrying me. I am Loved by the King.
I just read through an old blog from January- about life with Epilepsy. All I kept saying is that it sucked. I mean living with Epilepsy hasn't really sucked any less, but my perspective on life has.
But--Because even though I don't like the answers I still have Him
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