Most likely #2 came from #1. Not epilepsy itself. But all the work I prayed for, about, door opened, and I snatched for 3rd brain surgery, done awake. It is a critical procedure. It you aren't weird like me in the hospital, used to it, excited for the surgery to rid of the disorder that hindered a lot of me and my families life-then you aren't a candidate. They have to be able to lightly give you anesthesia to saw and cut, fold back your head and skull. Quickly awaken to a numbing medicine that will only last for a little while-then they are too busy focusing on the surgery, which is good then to get more numbing substance. So then it is just to tell yourself that the pain feels great, you just want more!!! So you get thru it, without ruining the procedure. I am very good at that.
That #3rd brain surgery rid my seizures. We were delighted. I dealt with the headaches that followed for about two months, then they dissipated. For two weeks my family and I joined a gym-my request, for all the stuff I did a decade ago. Cardio, and weights, then indoor rock climbing!!!!! And basketball teaching my child as well as racquetball. About a half week after that fun, it sank. My whole body quickly from one foot and leg to another, to hips, ......all the way up to my shoulders.....were and are killing. We are stuck, after a couple hospitalizations where all was performed-Mayo Hospital, Phoenix, AZ.... we still have no answers. I flew back there to AZ now that we live in Philly to get appts with MY docs. No clear cut answers except a maybe Fibromyalgia. Okay. Let me try to cope with that. I tried to for a while. Then saw a physical therapist out here who examined me for almost two hours. Said no way it is Fibro. He says, as we've wondered, that most likely during that "have to be quick" awake surgery that a piece of the temporal lobe that controls pain was clipped. Now my body is in blatant confusion. But hey, even though I can hardly walk, play with my child, make love with my spouse-I am seizure free, right?
NO. That isn't the point. This is the worst part of my life ever. Clinging to any reason to stay alive when I am so useless. This all goes back to the start of this decade Jesus has chosen me I guess to do not much but suffer.
Seizures began going nuts in 1999. In 2000, when pregnant, I couldn't work or drive any longer as for they got worse and were sporadic. I was with a non stable husband then (ex now) and his mother referred me in their little town in Tuscaloosa, Al to a doctor who started the chaos from lack of knowledge. As for, not told, I happily went to see this neurologist--for MIGRAINES. Mind you, this is something big to keep watch on during your pregnancy. But Ben Lucy III had little knowledge what to do with my case. My seizures we frequent, requiring more medication. But as he saw the only one I took my whole life was Phenobarbital, he increased it well passed toxic level. And my child was born at her tiny size, at my normal weigh around 110 level. (33) As well as having seizures today.
My whole life I never did one illegal drug, odd being from Lake Havasu City, nor did I have one drink until I turned 21. From then I had a total of like 7. No addictions.
But I had always had marital problems that heated up when my child was born. (mine as for he has signed her off) I went thru my first brain surgery-same hospital and surgeon. Complete success. Still on phenobarbital, but back down to 180!! It was time for me to move to TX where my now ex was stationed. Got there the 2nd of October 2002-he beat me on the 6th. Thru all of that-going to base, pictures taken of body bruises, x-rays etc, I made it thru every tear, and my baby's tear with no seizures.
It was all the drama that began to set it from my ex. Personal feelings I had of the whole situation-my brain snapped and recalled well. The answer to this dreadfulness are hand full of my pheno's. Numb my pain, get thru paperwork-hopefully get back to my family in Phoenix soon. But that medication is a quick downer, and you will bawl. So, you pop more. You are sure you can walk a straight line, talk, drive. As long as I made it thru the day, that pill was my "god." No one to reach to much about the abuse, this was simpler.
It led to a family friend I visited in Austin, as for I feel I look and talk normal. They were astonished at my "personality." It wasn't me. They called my parents in AZ said to get on a flight now, as he took me to an ER or two.
I got my own apartment after a couple months with my family in Chandler, AZ. It was my Tory and I. And had she been old enough to count for me, I could relay what an atrocious years for OD that was. Wasn't taken care of until I could tell it was not filling my void. So I went to a church, cause, honestly it had purple signs. I had to find another way to take my emotional pain from me. Pills didn't do it. It took 3 overdoses... and the last one never forgotten. Mayo ED had to pump my stomach as I was crying for Jesus' mercy, my lights went out into coma-He woke me up a different person.
Here is the catch. I became a full fledged follower October 24, 2003. And I know, recognize, feel, read, explain, and live out how more suffering is to come. I grasped that. So I fought over 20 medication changes and eight grand mal seizures in 2004. I fought side effects that made docs think I was dying--just the drug side effect. We see nothing working and had me in the hospital 2 times for testing for 2nd brain surgery. I was a complete success with that SISCOM test.
Surgery date #2 -went into Mayo March 28, 2005 and had the surgery done April 4, 2005. Once again-full of His love, grace, and mercy. Prayers all around me from others-as I prayed for my family to find Jesus. In and out. Amazing.
One month later I had another grand mal, and two complex partials. There is a WHY? But I didn't give into that. I blamed that medication I was still on. So we switched. I was doing pretty good with a few auras here and there. But worse off, my eyes killed the whole 8 mos of trying this medication. We tried to see if the Godly Heather would be different with phenobarbital now---and that didn't work. We have tried all meds so in 2006 we were at a loss. We gave this med that hardly anyone will take a chance. Felbaltol--caused liver damage quickly and aplastic anemia in prior patients. But I was gonna have faith.
I was becoming one of those stats about 5 months into it. Hospitalized very unwell summer of 2006. They got my white count back up and missing vitamins. For the fact I was 30 pounds less than normal, they decided to take me off of it. Not even a month later I was back in with constant huge grand mal seizures, from lack of Felbatol.
In between all these stays they have found one kidney that almost does not function at all. Drastic TMJ, RLS along with air stuck in my salivary gland from 1st brain surgery.
When I had that grand mal stay in 2006-that was when I had my first question to God-the Why? How's? etc And my heart was hurting.
But nothing hurt my heart so bad when after this 3rd brain surgery, basically seizure free-but held down, disabled with such severe pain from shoulders down. I can't do anything. When I do--it can be no more than 4 hours. And I will then be on the couch for 14 days and using my walker.
Why get someone well God for a couple weeks to show that Glory, than slap it with such trauma.???
I am in a severe check out mood--whether just God, but no, the pain is still here--than life. And I am really trying how else one could live like this-but I don't see that in the near.
So much more to tell.... but a glimpse of why He is never done with my medical suffering. And not just one, multiple. One gets well, quickly turns to another--seems more devil like. So between extreme pain from my 3rd brain surgery by Dr. Richard Scott Zimmerman, Mayo
and this new upcoming hardy symptoms from meniere's disease..... His plans are to keep me down....
Not sure of my plan, but I Love you All so deeply!!!
Love,
Heather J Siebens
Pain is such an uncomfortable feeling that even a tiny amount of it is enough to ruin every enjoyment.
~Will Rogers
All pain is either severe or slight, if slight, it is easily endured; if severe, it will without doubt be brief.
~Cicero
No comments:
Post a Comment