It's been a rough year. So many seizures in Jan. & Feb. that I ended up in hospital 4 times, 3 in the ICU, chest infections. Then went to the dentist for dental work and had more seizures, poor Bob scared the living daylights out of him and his staff. Then because of that trip I did damage to the right knee so then had to have surgery in April and as I'm coming out of the general anesthetic I start doing the funky chicken again. Had 3 I think in recovery, 2 in post op which is when they sent me to the emerg because the nurses didn't have the staff & equipment to handle the situation. So then you think things are going good, and that fucking cloak drops on me and it is so heavy, the heaviest it has ever been. I wake up crying and go to bed crying. My poor husband doesn't know what to say or do so he does nothing. My son tries to help by telling me to exercise, walk, meditate. All my friends are so tired of hearing my problems that they start telling me to take walks, and have you tried the medical marijuana. I'm so tired of hearing that line.
The thing is, I started having seizures when I was 8 1/2 yrs of age, and was told because they were such severe ones that I wouldn't live to my teens, then our family doctor wanted me committed to a Mental Hospital in Sudbury. Back in the 50's, 60's & even the 70's it was believed that if you took seizures without having had a head injury of sorts then you must be mentally retarted or had Down Syndrome. Although some would argue this point, I am not Mentally Handicapped as it is referred to today nor do I have Down Syndrome. I am just an unlucky person with parents that both are caring the gene and so I now have the diagnosis of "Genetic Generalized Epileptic with Grand Mal Cluster Seizures".
So I continued to have seizures all thru my teens, was told to never marry and definitely not have children. So I did both and after the birth of my oldest son I didn't have another seizure for 18yrs.
Then one day, December 31st, 1992 to be exact we were visiting friends in town and it began to rain and then quickly turned to freezing rain. So we headed home and within a minute my life changed forever. We hit black ice and did 3-360's, flipped up on our rear wheels and then went end over end into the ditch landing on the roof of the car. This left us hanging from our seat belts and my husband undid his and then mine. He panicked and got out and I couldn't move from the severe pain. Then a yr later in November had another MVA and suffered whip lash. Three weeks later the seizures returned with a vengeance. I sunk into a deep, deep depression.
Once I got to a London University Hospital and saw a specialist that deals only in seizure disorders things started to happen. I hadn't taken medicine for all those yrs and now I was on all kinds of pills, some for Reflux & Ulcers, some for pain, some for depression and of course 3 different pills for seizures.
It was after all this that I found out that with Epilepsy comes depression, and with the pills that control epilepsy comes side effects 1- depression 2-diarehea 3- fatigue 4- weight gain. Oh joy is me, and I have all 4. It's the depressions that is ruining my life now not the seizures, this flippin cloak is so heavy some days that it's hard to think of anything other than death. After all I'm 60, my kids are growing and from what I've learned over the yrs is that life moves on no matter what. Look at 911 in the States, the death of my nephew, my mother, my father and so on and so on.
So I go back to see my counsellor but he can only see me for 6 wks, because it is a Government funded agency and it is called a crisis centre. So in all this time from January of this yr till now my Dr. takes me off the Dilantin that I have been taking for 20+ yrs and puts me on Keppra, Lamictal, Primidone and 2 anti depressants. But they take me off the dilantin to quickly and that G.D. Cloak has become so tight and it is like being a Mummy it is wrapped around me so tight. So thoughts of suicide start to enter my mind again and then I start having seizures again. Within a wk, I've had at least 50 seizures, so there I go back to London University Hospital to see the specialist again.
While I'm talking to him, I turn to look at my husband and start to shake uncontrollably and then I have a seizure right in front of the dr. It takes him about 5 mins to get me to respond and he tells me that they are not Grand Mal seizures but Suedo Seizures, but to be sure he sends me over to have an EEG. While having the test in fact I think it was near the end of the test I had another seizure. Again it was a suedo seizure. He brings me out of it and he tells my husband that I have no control, I am not bringing them on, it is my bodies way of handling the stress & depression I am under. When they tell me, I start crying all over again and think why would I do this to myself. They are so hard on me, I loose memory, I usually hurt myself somehow but he repeats that I do not have control it is my bodies defence against the pain of depression. I'm sorry but Fuck, I don't know what hurts me more knowing that they are not Grand Mal and only suedo seizures.
So here I am in Limbo until I get off the Dilantin totally. I'm in Limbo until the new dose of anti-depressant kicks in. And I'm in Limbo because although I would love to end it all I can't I promised my sons, husband and my counsellor yet don't think for a minute that as long as this damn CLOAK hangs around my shoulder Limbo is my life.
I'm tired and am going to bed, my hubby is on midnights this wkend and this is another thing that depresses me, he should have retired over a yr ago but he can't because of my medical costs. LIMBO!!
night all Moe
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