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mangom...
Family support
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Thank you, Scratch, for welcoming me to the site. It's good to have a place to share, vent etc.
Ijust started new med.--keppra(starting with 500mg 2x daily)--yesterday. Hope it works well. I feel groggy, sort of subdued,a little less energetic than usual--I'm a morning person. So far, so good.
My biggest issue right now is my children. They are very loving,caring and protective, but just can't get them to sit down and have an indepth information-sharing discussion about this condition. it's making me get fearful, and I worry that no one close to me really has a sense of what's what. This has really made me think of getting a Medic Alert bracelet.
Also I need to find me a good Neuro. I have changed three(3) in the past 4 years. I was shocked and appalled at the attitudes, the disrepect in some instances, the arrogance etc. Then I read what others had to say about their doctors. It was a relief to know that i was not crazy or imagining stuff!
Recent Comments on this Discussion
Since your children are loving and protective, they are not in denial.
They are taking care of you because they love you. My husband
and son take care of me. We do not discuss
it because there is nothing to discuss. They recognize that you have
epilepsy. We do not discuss
it, we know about it and what to do if I have a seizure.
Hello mangom,nice meeting you. Your boys love you so much that maybe they are just scared and afraid to talk about it and deal with it in their own way. Everyone handles epilepsy in their own way.At least you are very blessed to have the love your children give to you ,and that has to be a comfort. My family is very supportive even though they have now idea why I have seizures.I have seen 4 neuros in 4yrs,so I do understand what your saying.....are their any good ones out there? We really don't talk much about it at my house...I really think it scares my 3 grown kids and hubby...it is like if mom acts normal then it is not there. Although they all know it is and what to do. I wish you only the best of luck and please feel blessed that your boys are that close to you. You do sometimes just want to talk about it if it is just to get this off your mind...but that is when I find tthis site remarkable. Remember we are all in the same boat and all are wonderful people here...talk,vent,add comments,share a story or just read what is going on in other peoples lives. God bless you each and everyday.
"Guard me as the apple of the eye; hide me in the shadow of your wings." ~Psalm 17:8
HI MANG, I AGREE WITH MAGGIE. I AM GLAD I READ WHAT SHE WROTE BEFORE I SAID THE SAME THING. TOO BAD THEY WON'T SIT DOWN AND TALK ABOUT IT. MAYBE IT WOULD HELP IF YOU PUT A NOTE ON THE FRIG OR SOMEWHERE THEY WOULD SEE IT. LET THEM KNOW IT IS VERY IMPORTANT TO YOU TO SIT DOWN AND TALK WITH THEM. IF THEY SEE IF OFTEN ENOUGH, HOPEFULLY IT WOULD SINK INTO THEIR BRAINS! LOL! I UNDERSTAND YOUR NEED TO TALK WITH YOUR CHILDREN. I HAVE NEVER HAD THAT OPPORTUNITY. WHY DON'T YOU EMAIL ME SOME TIME. I AM STILL LISTENING TO MY MUSIC, BUT STILL NOTHING THAT YOU COULD LISTEN TO. BUMMER, HUH.
I WISH YOU PEACE, LOVE, BLESSINGS, JOY.........JAN
I USE ALL CAPS FOR THE VISUALLY IMPAIRED.
HI JAN,
JUST WROTE YOU A NICE BIG PARAGRAPH--SEEMS TO HAVE DISAPPEARED OFF THE BOARD. LET ME TRY AGAIN. WAS READING AN EARLIER BLOG OF YOURS LAST NIGHT . . . YOUR COMMENTS ABOVE THIS NOW HAVE NEW MEANING TO ME. DO UNDERSTAND THOSE DEEP INDESCRIBABLY PAINFUL SITUATIONS. HAVE BEEN THERE! JUST KNOW THAT, TRITE AS IT MAY SOUND, U CAN COME TO APLACE OF INNER PEACE & HEALING, EVEN IF PERSONS NEVER BE/ACT AS WE WOULD WISH. IT'S TOUGH, UNSETTLING AND THE SCARS MAY ALWAYS BE THERE, ALONG WITH THE LIGHT & GRACE. SO KEEP ON KEEPING ON.
PEACE & HARMONY
HI MANGO! YOU ARE RIGHT OF COURSE! I ALWAYS LOOK FOR A HIGHER SPIRITUAL MEANING TO EVEN THE MOST PAINFUL OF SITUATIONS. I PUT A BLOG I COPIED FROM A NEWLETTERS ABOUT GETTING THRU THESE THINGS, JUST A FEW DAYS AGO. I WISH I KNEW A WAY TO REACH MORE PEOPLE. THERE ARE THINGS SAID THAT I HAVE HAD TO CONTINUOUSLY DO FOR SO VERY LONG.......EVEN WHAT SEEMS TO BE THE MOST DEVASTATING CAN BECOME A WAY OF LEARNING TO GROW IN PEACE WITHIN ONESELF.
I WISH YOU PEACE, LOVE, BLESSINGS, JOY.........JAN
I USE ALL CAPS FOR THE VISUALLY IMPAIRED.
HI JAN, HOPE ALL IS WELL WITH YOU.
I WAS READING THIS POST FROM YOU AND COULDN'T HELP SMILING. HOPE I HAVEN'T GIVEN THE WRONG IMPRESSION ABOUT MY CHILDREN, WHO ARE REALLY ADULTS LIVING BUSY LIVES WITH FAMILIES OF THEIR OWN. WE ARE ALL VERY CONNECTED, AND REALLY TALK ABOUT EVERYTHING. AS I SAID THEY ARE VERY CONCERNED AND PROTECTIVE, & GENERALLY KEEP ON ME TO GET ENOUGH REST; TO DE-STRESS ETC. MAGGIE'S INSIGHT HAS REALLY HELPED--I CAN SEE THEIR SIDE OF THE PICTURE AS WELL. AND I UNDERSTAND, ESPECIALLY SINCE MEN TEND TO DEAL WITH EMOTIONAL & PAINFUL ISSUES IN VERY DIFFERENT WAYS THAN WOMEN. ALSO REALIZE NOW THAT i HAD A LOT TO DO WITH THE LACK OF COMMUNICATION IN THIS AREA, SINCE i HAD NEVER SPOKEN UP, THE WAY I'M DOING NOW SINCE COMING TO THIS SITE. SO IT'S GETTING BETTER & IN ALL THE IMPORTANT WAYS THAT MATTER, THEY ARE THERE FOR ME.
PEACE & HARMONY
WELL, HI MANGO AGAIN! NO, I DIDN'T THINK ANY LESS OF YOUR KIDS OR YOU. MAGGIE'S REPLY WAS THE SAME AS MINE WOULD HAVE BEEN. IT IS MORE DIFFICULT FOR MEN TO UNDERSTAND, SOME MEN ANYWAY. I THNK MY SON UNDERSTANDS MUCH BETTER THAN OTHERS, BUT THAT IS BECAUSE HE HAD A HEAD INJURY THAT REQUIRED SURGERY, WHEN HE WAS FIVE. HE ALMOST DIED. AND HE WAS RESCRICTED FROM ACTIVITY UNTIL HE STARTED HIGH SCHOOL. IT CHANGED HIS LIFE BECAUSE HE WAS NOT ALLOWED TO DO WHAT OTHER BOYS COULD.........BUT IN SO MANY WAYS, HE IS STILL FROM MARS!!!!
I WISH YOU PEACE, LOVE, BLESSINGS, JOY.........JAN
I USE ALL CAPS FOR THE VISUALLY IMPAIRED.
Hi Maggie, Nice to meet you too! Thanks for your insightful comments. I believe you're absolutely right in your assessment of the situation. It's very comforting to have understanding and support. Connecting to the site has been a great release, for I have not shared much with others throughout the years. Generally I'm a pretty private person; and I was also wary of stigma and discrimination. I remember I lost my very first job as a young girl, when I confided about my E. I believe that subconsciously the fear has always remained. Anyway, the good thing is that at this time of my life I feel moved to open up, share and 'stand tall'. That's oh so liberating and healing!!
If you have a few minutes to spare, please read the reply comment I posted under-'Women with Epilepsy . . . Epilepsy triggers'. Didn't know if it was possible or how to post it as a new comment in this forum.
Be Blessed & Joyful.
Hi Ruth. Thank you for that new perspective--I never looked at it from that angle. Also I do appreciate being reminded that I am blessed to be loved, cared for and protected.
Peace & Harmony
your quite welcome.......................and yes alot of these dr's are idiots and don't care about the patients........anytime u want to vent and i'm on just let me know................i have a busy schedule so i'm usually on early in the mornings or the weekends.........get the bracelet...it's a good idea............just remember your never alone with e......you have friends here........take care and god bless..........
Hi again! And you're right, Scratch, just connecting here for these few days has made me feel heaps better. Also there were and still are so many experiences/episodes that finally make sense to me now, and actually have a name, like the 'Jamais vu'; the anxiety and agitation; the heightened psychic awareness/ability etc. And it's less scary, knowing that others have been/are experiecing the same kinds of things, and that it's all part of the health condition.
Even though I've had no suggestions about the Family support issue, just talking openly about it has given me the push to be more proactive and actually request supportive help from my sons, a cousin and a friend(have always found it difficult to ask for and accept help from others--I'm better at giving). Also offered to link them up with sources of information, like this site. So I'll see how it goes from this point.
Peace & Harmony.
so happy for u mangom......................hang in there were all here to help
HI SCRATCH,
TRUST THAT ALL IS WELL WITH YOU.
IT'S BEEN TEN(10)DAYS SINCE I STARTED TAKING THE KEPPRA. I BELIEVE IT'S MAKING ME VERY FATIGUED. I'VE BEEN FEELING EXHAUSTED AND DOPEY THESE PAST DAYS. IT HAS BEEN A BIT OF A CHALLENGE GETTING THROUGH THE WORKING HOURS THIS WEEK. HAVEN'T BEEN ABLE TO DO MY USUAL STUFF AFTER WORK, FOR AFTER I TAKE THE NIGHT DOSE, WITHIN AN HOUR OR HOUR AND A HALF, I'M WIPED OUT AND JUST TUMBLE INTO BED(AS I'M ABOUT TO DO NOW--TOOK IT LATER THAN USUAL) HOPE IT GETS BETTER AS I CONTINUE TO USE IT.
PEACE & HARMONY!
don't know much about keppra .....sorry..........but don't be afraid to ask your dr. or pharmacist ??????????hope you start feeling better soon......all meds have different side effects so hang in there....take care and god bless...
Hi Scratch, Thanks! I'll continue to check here with others who mention using K. So long.
Peace & Harmony
hey magmom .....seems like your feeling more comfortable every day.......that's great......talking about your e with others does help and u get some new information as well.......glad your doing better......have a good one.....later....
Hi Scratch, Hope all is well.
Had frustrating day yesterday. Commented a bit earlier--but not sure i clicked post. Will tryagain. Spent long hours in ER yesterday. Knew I was having Sz episodes, but no one would listen. Did blood-work & EKG: gave me painkillers and hooked me up to IV. Ist Dr. came over,& asked Q's; tried to give history. Dr left to go access my files/charts, but never returned. Later I asked when was Dr. going to tell me something, Nurse said that Dr. had already signed my discharge orders and left!! I'm still hooked up to the IV. Told I have Dehydration; & a nutritional deficiency(which I'm already aware of and being treated for) Am given more tabs for that. At urging of my very attentive and caring Nurse, 2nd Dr. reluctantly arrives(after impatient-sounding comments that I overhear from my bed in the hallway). Tried again, with no success. Told that it's not SZs, just a tension headache. Tried to explain that the sensation in my stomach and the nauseaus feeling was not a 'regular tummy upset and nausea'. This was simply brushed aside and I'm told to take some other pills--it will get rid of the stomach problem. I respectfully declined and was duly dispatched from ER.
In retrospect sounds hilarious, but is really cause for concern on many levels. Also tells that too many healthcare professionals/providers don't seem to know very much about this complex issue.
Peace & Harmony
do u have a neuro??? i am sorry for what happened in the hosp room.......seems like most of these dr's are pill pushers and don't want to get to know the patient or his or her problems.......take 2 of these and you'll be fine....they don't have e and have no clue what it feels like.......like i said earlier ....idiots........oh and that will be $ 200.00 PLEASE...wow thanks doc i feel better already....i hope you get better mag...and find a caring neuro who will be your equal and not just push off pills on u....... take care and god bless.......
Hi, Scratch, Thanks for the encouragement. And, no I haven't found another neuro yet. Am still checking. So much is based on your insurance or lack of insurance, is this Dr. in yr insurance network etc. And of course they called me at home yesterday( from Hosp.) to tell me i needed to pay x amount of money.
I'm feeling really down tonight--not sure why.
Peace & Harmony
hi mang.....sorry u feel so down.....i know all too well about the insurance cr ap......just remember to take it day by day and do the best u can......god speed in making u get well soon mang....have a great day......scratch
Hi scratch, really appreciate the support & good wishes. Much needed . Thanks!
Peace & Harmony
anytime mang.......gonna keep it short cause i broke my glasses.......your quite welcome.....god i hope this is spelled correctly.........later scratch
HI SCRATCH, SORRY ABOUT BROKEN GLASSES. HOPE FIXD/REPLACED REAL SOON. WILL KEEP THIS SHORT FOR YOU.
PEACE & HARMONY
thanks for keeping it short it helped out alot......went out on sat and got new reading glasses....omg much better.....it's a shame when the eyesight starts to go.....thanks for answering in large font that helped as well.....i hope that all is well on your homefront......stormed alot on saturday....cant change it so why worry about it.....it's early right now 529 am ...waiting on the coffee to get done....thanks for your support mang....i appreciate it.....take care and god bless....scratch
Scratch, am very concerned . May need to withdraw from this site--at least for now. From yesterday and today-whenever i get on this site, results in serious 'breaches' of my system. This is not funny! Trust that those who administer the site will respond to this. Who do i contact directly? . . . .
Decided to add another comment. Contacted Webmaster--hope they can or would care to investigate. would not like to have to stop sharing. Will investigate more at my end.
Peace & Harmony
sorry to hear about the comp problems........can't help here sorry .....kinda comp illiterate.......i wish u well in the future....take care mango
sorry to hear about the comp problems........can't help here sorry .....kinda comp illiterate.......i wish u well in the future....take care mango
You're very welcome, scratch. take care.
Peace & Harmony