Epilepsy Talk
It’s YOUR Turn! | November 5, 2020
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Epilepsy Talk 
I’m venting frustration. I love my epileptologist, but getting an appt. to see her, no matter how bad my sz, takes forever. First I have to ask for an “appointment ticket,” justifying the need to see my neurologist,” which someone reviews, allowing me to move to step 2: going to MyChart to find the next opening in the calendar. On Monday I managed to grab a Zoom meeting on Jan.12, 2021 @ 4.30. BTW, I’m charged the same amount for telemedicine as an in-person appt. In the meantime, I’ll have to deal with the sz-o’-the-day and brain crashes, even when I think my medications could use some serious tweaking or changes. But at least I don’t have Covid-19!
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Comment by qmfub — November 5, 2020 @ 10:39 AM
An appointment ticket? That’s a new one on me!
What was your Zoom meeting like? What did she do?
I’m selfishly asking because I was thinking of writing an article on telemedicine and you could be my “guiding light”!
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Comment by Phylis Feiner Johnson — November 5, 2020 @ 12:42 PM
Sometimes I try to skip the whole computerized system by just punching “0” on the phone until it connects me to a person who can actually do something!
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Comment by Maralou Higgins — November 5, 2020 @ 12:56 PM
When I press “0” (and there are endless options for confusion), I just get dead air!!! 🙂
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Comment by Phylis Feiner Johnson — November 5, 2020 @ 1:06 PM
I am so sorry you have to go through such “steps.” If they refused to see me–or didn’t have the *TIME, I would be ready to “take the tweaking in my hands.” Many years ago, I did this with my first neurologist by hand writing and telling him I was increasing my medication, which one and how much. This was in the day when one had to wait an entire YEAR before the next visit! Well, I succeeded in getting my dosage up enough that the “blackouts” STOPPED! After a year of waiting with NO “Blackouts,” I wrote Dr. Adams, telling him. He was already head of the DMV here in Richmond, Va. for people with medical conditions. I was seizure FREE, had my driver’s license AND a car for about 7 years! One extra year was without “blackouts.” After having a complete hysterectomy, it wasn’t long before they came back.
Just let them know you are “SOS SERIOUS.”
*My opinion, only. “Letting out some steam” with you. Take care.
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Comment by Effie Erhardt — November 6, 2020 @ 8:39 PM
Effie, sometimes being your own advocate is the only way to go in medical matters.
But, then there’s the downside of not being a medical professional.
Obviously, you know your body best and was able to listen to it and act.
It was a brave choice.
As for hormones and seizures, this article may help:
Hormonal Imbalances and Seizures in Women https://epilepsytalk.com/2019/11/25/hormonal-imbalances-and-seizures-in-women/
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Comment by Phylis Feiner Johnson — November 7, 2020 @ 10:00 AM
Or sometimes (if your as stubborn as me) it REALLY HELPS TO HAVE A FRIEND hint hint or ANGEL that will even call you and staying on the phone with you if you do actually go into the hospital!!!!! Just to hear or have another friend or person you trust with you HELPS IN WAYS THEY WILL NEVER KNOW OR YOU CAN NEVER BE ABLE TO THANK THEM FOR!!!!!!! 😊❤️
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Comment by Kathy S.B — December 13, 2020 @ 10:47 PM
I tried to attend my meeting today and yet my epilepsy specialist didn’t even show up! I waited an entire hour! Nothing. •sigh• Lovely…has to check in 15 mins. early, filling out all the necessary questions and all. 🙄 Still no Doctor arrived. All the while my blood sugars got lower and lower since I had not eaten; being a type 1 diabetic as well, I did not want to miss my Appt. I had to try and cook at same time. I ended up burning myself on a Stove at same time w/ low bg of 44. It’s preposterous, no show for this epilepsy specialist. •sigh• Of course, we’re just patients w/ health issues. They’ve tons of patients. Our health issues don’t matter. All this is way too much for me. All these seizures, all this stress, all these health issues that aren’t getting resolved for me and my life feels like it’s just getting worse.
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Comment by Mirabel Filomeno — November 9, 2020 @ 8:27 PM
Ouch. That must have hurt physically and on a visceral level as well…
Not even being treated like a person, no less a patient. I believe common manners dictate that IF you can’t be on time, to call and at least apologize.
Such disrespect is hard for me to accept — from anyone. Be it a doctor or a taxi driver.
And your blood sugar went awry to boot.
I guess this wasn’t exactly a stellar day for you, Mirabel, and I’m so very sorry for that.
Perhaps you’ll find some comfort in this piece:
Ode to a Doctor’s Visit… https://epilepsytalk.com/2020/10/29/ode-to-a-doctors-visit/
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Comment by Phylis Feiner Johnson — November 9, 2020 @ 9:06 PM
Does your health care group have patient advocates? I haven’t had occasion to use one, but a friend has. Worth checking into.
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Comment by HoDo — November 10, 2020 @ 7:17 AM
Gosh I sure wish we had those here in Canada!!
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Comment by Kathy S.B — December 13, 2020 @ 10:58 PM
I lost my job due to a mild epileptic seizure. It stops me for a min, and I go back to work. My disability was written in a separation document. I am trying to file a EEOC complaint, but can’t get an interview. It may not matter due to the company being small. I am not sure how many worked there? I am trying to replace this job with another, where I am alone, or at least accepted. My area if employment is limited due to transportation, and at home jobs don’t accept wirless dish connections.
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Comment by Chris Keylon — November 5, 2020 @ 10:45 AM
I don’t know about the dish connection part of it, but maybe this link will help:
11 Companies Hiring for Jobs You Can Do at Home https://epilepsytalk.com/2018/12/12/11-companies-hiring-for-jobs-you-can-do-at-home/
As for your previous job, have you contacted the ADA?
The ADA (American with Disabilities Act), applies to all employers, employment agencies, labor organizations, and joint labor-management committees in which at least 15 employees work for each working day in each of 20 or more calendar weeks.
The ADA excludes the federal government or other employers that receive a certain level of federal support (because they are subject to other similar regulations), as well as Indian tribes and private-membership clubs that are exempt from taxation.
For more information about the ADA, got to #5 of the subtitle What Are My Legal Rights? in the article Epilepsy, Employment and the Law https://epilepsytalk.com/2019/02/20/epilepsy-employment-and-the-law/
I hope I wasn’t too confusing!
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Comment by Phylis Feiner Johnson — November 5, 2020 @ 12:37 PM
I saw a man who had no shoes but then I saw a an who had no feet , then I decided there were others far worse than me so my whole attitude changed
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Comment by Wally venechuk Gibsons Canada — November 5, 2020 @ 12:22 PM
A deep and soulful quote. Obviously, your rivers run deep, Wally.
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Comment by Phylis Feiner Johnson — November 5, 2020 @ 1:01 PM
I like the support and education I receive from epilepsy talk. After 45 plus yrs of struggling with epilepsy I had a left temporal lobe love tiny and now 3 yrs and 2 months seizure free. My life is better but still difficulties due to meds. Currently on 3 meds only off 1 since surgery but I took on lexapro for moods. Plz let’s think positive by reaching out to each other. My drs are at loma Linda. Dr boling neurosurgeon and dr Losey epileptologist. Read about them and what they’ve done with epilepsy in the world. I kiss the ground these drs walk on.
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Comment by Janet deardorff — November 5, 2020 @ 12:42 PM
Janet, I have read about them and apparently a lot of people agree with you.
Both docs are listed in the article 2020 Patient Recommendations for TOP Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors
https://epilepsytalk.com/2020/01/08/2020-patient-recommendations-for-top-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/
It’s a compilation by website forum members who have had positive personal experiences with docs over the years.
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Comment by Phylis Feiner Johnson — November 5, 2020 @ 12:58 PM
I do not have epilepsy but my son does. Had his first seizure at 9 months of age, is now 19. He will never drive, never live on his own. I hate what this disease has taken from him more than I can articulate.
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Comment by Chester Kuhn — November 5, 2020 @ 12:43 PM
I think for a parent, it might be more difficult than for the child. Because your pain is at a more visceral level and deep seated.
Nobody wants to see any harm come to their “baby” at any age.
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Comment by Phylis Feiner Johnson — November 5, 2020 @ 12:55 PM
I have had a couple of great telemedecine appt. because my doctor was really paying attention. Then we had one where her kids were coming into the room. That was awkward for her!
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Comment by Maralou Higgins — November 5, 2020 @ 12:52 PM
I imagine it was awkward. But how was the appointment otherwise?
What did you do? What did she say?
I’m being selfish in that I’m thinking about writing an article about telemedicine. But not having had any personal experience with it, I’m kind of in the dark.
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Comment by Phylis Feiner Johnson — November 5, 2020 @ 1:04 PM
I guess the nice part you could take away from that appointment would be your doctor is obviously a parent well. Meaning sometimes it helps put into perspective for even us that they also have their own family lives they have to think of as well and maybe they are human with feelings too 😘. Even if they are EPITOLOGISTS or neurologists.
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Comment by Kathy S.B — December 13, 2020 @ 11:04 PM
Even though it’s not cool to say, “My stigma is worse than your stigma,” I take issue with the web site listing the Ten Worst Health Related Stigmas and epilepsy is not on it. Rant! Rant! Rant!
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Comment by HoDo — November 5, 2020 @ 3:26 PM
Goodevening HoDo 😊💗. Sometimes I think epilepsy is the worse thing in the world and has got to be one of the ten worst health related stigmas as well!!!!!!! But then I go out (when I can) and I see people who are way worse off than myself and very quickly realize maybe it not afterall. It’s just a matter of how people choose for it to be themselves because that’s how we’ve been made to feel!!!!!!! 😊❤️
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Comment by Kathy S.B — December 13, 2020 @ 11:09 PM
Good rant!!!
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Comment by Phylis Feiner Johnson — November 5, 2020 @ 3:29 PM
My experience with Zoom, as with any flickery bits on a screen, is that warning signals go off – Keep this up and you will be sorry, neurologically speaking. My doctors and I talk on the phone.
A friend uses telemedicine extensively, though. It serves her well.
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Comment by HoDo — November 5, 2020 @ 3:34 PM
Hmmm. I’ve had several Zoom meetings. But I was wondering about the effectiveness of a one-on-one doctor/patient visit.
Not personal enough? Not targeted enough? Not thorough enough?
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Comment by Phylis Feiner Johnson — November 5, 2020 @ 3:44 PM
Medical appointments by phone are just as targeted and (im)personal as face to face meetings. They don’t feel private, because I can hear other people where I live. And, of course, your vitals can’t be taken. You can hide more, if there’s something you feel uncomfortable with. If it were a diagnostic appointment, I’d be dubious.
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Comment by HoDo — November 5, 2020 @ 3:55 PM
Excellent advice. Thanks HoDo. I may just skip the article after all. Unless I do a Pro/Con kind of thing.
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Comment by Phylis Feiner Johnson — November 5, 2020 @ 8:16 PM
I’ve wondered the same thing, Phyllis. At least now that I’m much older.
Dr. Adams was my very first neurologist. I was scared to death whenever going to see him! Always felt I was going to be judged–like at home, I guess. He couldn’t have been a nicer man.
When I DID see him by myself, it was because my mother had died. Now my husband goes and does a lot of the talking. We always carry a printed list of what I take. The doctor already knows this.
I DO have questions I would like to ask, sometimes. THIS TIME: I want to ask about ANY difference between *Mysoline and *Primidone. If the first is even made any more. Doctors sometimes throw medications at us and we “just take them!” Like someone else mentioned, I need an increase in mine, also. This will take more of his *TIME.
Things should be much easier for Today’s Doctors. They have *computers! Dr. Adams would hand write everything down! I was in his office for close to an hour–when there, between examination, talking about “events” and writing things down. Plus writing out Prescriptions! They were not called in, like today. Things have changed a lot since 1959.
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Comment by Effie Erhardt — November 6, 2020 @ 9:10 PM
Mysoline is the brand name used in the United States, Canada, and many other countries for the seizure medicine with the generic name Primidone.
Drug classes: Anticonvulsant
https://www.epilepsy.com/medications/primidone
I agree that things sure are different than when I was diagnosed in 1963. Especially the attitudes of the docs.
But, I think a lot of that has to do with overload. And sometimes the impersonality of the computer age can be your foe rather than your friend.
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Comment by Phylis Feiner Johnson — November 7, 2020 @ 10:13 AM
My grandma used to take me to the doctor as a baby when something was wrong with me and the doctor back then diagnosed me with everything under the roof but epilepsy!!!!! So when I finally had a grandmal seizure on a Saturday morning she has me rushed into emergency and thank god the doctor on call had an older daughter than myself who knew I was having a grandmal seizure and had me rushed out to the nearest children’s hospital to get properly diagnosed as an epileptic!! He has since retired, but (due to a tiny town) and of course church we do still see one another. He still checks on me now and there have been times I have asked him if he can please come with me to see my family doctor now?? Because I feel safe with him and I still trust him. The only problem is now he’s not very up to date with the various medications or surgeries.
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Comment by Kathy S.B — December 13, 2020 @ 11:18 PM
Another semi-rant (file under “Only to be Expected”) is that when people try to list problems about having epilepsy, what the patient sees as a problem and what the healthcare workers sees as a problem are often quite different. Thank you to the World Health Org for pointing this out. Let’s give that one a single Rant.
WHO also seems to, or did seem to in 2005, view epilepsy as a mental health issue. If true, Rant! Rant!
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Comment by HoDo — November 5, 2020 @ 3:40 PM
I’ll add a third rant to that.
So, were all crazy? Or is it “all in our heads”? (All puns intended.)
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Comment by Phylis Feiner Johnson — November 5, 2020 @ 3:46 PM
Anyone know of a life jacket-like head support out there? A family member with temporal lobe epilepsy (none for 7 months, not grand mal, he has arm jerking, and head bobbing) wants to go in his hot tub and take baths. He has anxiety and says warm water helps him calm down.
Thanks
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Comment by Suri — November 5, 2020 @ 4:25 PM
If you do a search for “inflatable head support,” all kinds of products for travelers will pop up. Some of them look like they will work in water. You could also try “head and neck support.” Maybe a physical therapist could suggest something as well.
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Comment by HoDo — November 6, 2020 @ 1:21 PM
Suri, the only thing I can think of is one of those neck bath pillows that also supports the head.
But no complete body float or preserver. 😦
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Comment by Phylis Feiner Johnson — November 5, 2020 @ 8:20 PM
There used to be inflatable neck pillows that were marketed to travelers. They might not be waterproof.
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Comment by HoDo — November 6, 2020 @ 7:27 AM
I’m here because I want to be an inspiration. I had 40 years of battling with seizures, meds and setbacks before surgery so I know what everyone is going through.
Back on November 5, 2000, I went to work even though I didn’t feel right. Later that day I had a seizure, got sent home and returned to work the next day. Why bring this up? That was the LAST seizure I had. I’m officially 20 years seizure-free!
Last night was my bowling night so I went to celebrate with my team. I brought food, bought drinks and we looked pretty bad as far as bowling. 😉 Then I gave the other four guys lottery tickets. I told them, “You have just one chance to feel as good as I do tonight. I just wanted to see five seizure-free years but I’ve seen 5, 10, 15 and now 20 years so that’s what these tickets represent.” Only two tickets were winners and just for $1 but I think they knew what I meant.
I never thought this day would ever come but it did so I’m just saying, “Never give up! The only way you can win your battle is to fight back! Even if seizures look like they won, think of all the times you got a good shot in!”
Here’s to many seizure-free days, weeks, months, years! 🍺
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Comment by Ed Lugge — November 6, 2020 @ 8:28 AM
Huzzah! Hooray! Congratulations! May it be so!
And thanks for sharing.
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Comment by HoDo — November 6, 2020 @ 8:52 AM
Oh Ed, that’s wonderful. Your attitude and generosity are inspiring. Your love of life and gratitude are touching.
May we all share your fate and have the grace to appreciate the positive in our lives.
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Comment by Phylis Feiner Johnson — November 6, 2020 @ 9:15 AM
Thank you. I just want to spread a positive feeling.
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Comment by Ed Lugge — November 6, 2020 @ 9:24 AM
CONGRATULATIONS!
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Comment by Effie Erhardt — November 6, 2020 @ 9:38 PM
Thank you.
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Comment by Ed lugge — November 6, 2020 @ 11:03 PM
Wow Ed,,, Thank you for sharing your beautiful story, it’s uplifting.
Congratulations for your victorious
struggle to beat epilepsy.
Gerrie
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Comment by Gerrie — November 7, 2020 @ 3:29 PM
Anytime I see what I share is helping others and giving them a positive feeling, it encourages me to stay on this positive track and let loose with anything that will build people’s confidence.
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Comment by Ed Lugge — November 7, 2020 @ 4:06 PM
CONGRATULATIONS ED!!!!!!! GOOD FOR YOU YOU MAKE US PROUD!!!!!!! 🙏🏼🎉🎈🎊🎉
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Comment by Kathy S.B — December 13, 2020 @ 11:23 PM
Thank you for the kind words, Kathy!
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Comment by Ed Lugge — December 14, 2020 @ 12:23 PM
You very welcome Ed 😊. Thank you as well 😊🙏🏼🦬🦅❤️
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Comment by Kathy S.B — December 15, 2020 @ 8:40 AM
I have been asked to consider writing about a difficult time in my life. Such writing would not be fun, so I waver. Why revisit negatives? Why put them out there?
In an essay in Leslie Jamison’s excellent book, Make It Scream, Make It Burn, I found the line, “Finding darkness in another story is so much less lonely than fearing the darkness is yours alone.”
So I thank also all of you who share dark stories, and consider how to string the beads of my own.
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Comment by HoDo — November 6, 2020 @ 1:51 PM
HoDo, however you look at it, you are a jewel.
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Comment by Phylis Feiner Johnson — November 6, 2020 @ 1:57 PM
Right now my anxiety is through the roof! Especially with Covid. My neurologist‘a office is in a hospital. Now there’s an outbreak there. I want to do a phone visit. I’m already working at a Covid testing site
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Comment by Chantel — November 7, 2020 @ 1:20 AM
Some people are reporting good results with telemedicine. I think it’s probably worth a try.
If nothing else, it may put your mind at rest.
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Comment by Phylis Feiner Johnson — November 7, 2020 @ 9:50 AM
As long as this invitation stays open, I’d like to share another milestone in another month.
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Comment by Ed Lugge — November 8, 2020 @ 1:40 PM
Can’t wait, Ed! 🙂
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Comment by Phylis Feiner Johnson — November 8, 2020 @ 2:22 PM
Sometimes you wonder if you will ever be able to get off of social security. You can feel so smart, maybe even smarter than people you know. Financially, it can be scary. I want to bbn publish my children stories and book for disabled, as well as, get married. I do not care to live alone or on low income all of my life.
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Comment by Macena Mason — November 10, 2020 @ 6:38 PM
Macena, have you ever considered self publishing on Amazon? Or joining support groups?
Both are good ways to get out there, both intellectually and socially.
Plus, this link might help you find a paying job:
11 Companies Hiring for Jobs You Can Do at Home https://epilepsytalk.com/2018/12/12/11-companies-hiring-for-jobs-you-can-do-at-home/
Good luck!
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Comment by Phylis Feiner Johnson — November 10, 2020 @ 6:50 PM
First of all my heart goes out to each and everyone of you the struggle sucks… I have suffered with OCD most of my life which just by itself really sucks…reached out to many docs their answer was antidepressants which helped a little…had my first grand mal at 56 so what the hell add that to my OCD…and in my younger days some addiction to alcohol which at the time thought helped my OCD…now at 59 I’m truly exhausted can’t seem to get through the darkness…on keppra for nocturnal seizures it works but I don’t like the side effects tried others …can’t seem to get answers from docs…on lexapro don’t feel like that’s doing much…very frustrated sick of neurologists …when are they’re going to be specialists in mental illness and epilepsy….glad I can vent just very frustrated 😠
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Comment by Jody — November 12, 2020 @ 8:29 PM
Oh Jody, what a tough road you’ve been traveling. I think the addiction was just you trying to self medicate yourself. And I’m sure the pain was all too real.
Epilepsy is tough, but Keppra in itself is a challenge.
Keppra — What People Are Saying https://epilepsytalk.com/2020/05/21/keppra-what-people-are-saying/
It can bring out the darkest side of many. And to others it’s a life-saver. And I’m sure the nocturnal seizures are depressing too.
I’ve been in talk therapy and on antidepressants (as well as Lamictal) for many years. The combination really works for me. But sometimes you have to kiss a lot of frogs to find your magical mix.
I tried many antidepressants. On one I almost leaped from a third story terrace. Not very reassuring.
And I “interviewed” many therapists. Until I found one who truly is a “prince” of a man.
Things can be grim. But they also can improve. You need to be your own advocate and just believe.
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Comment by Phylis Feiner Johnson — November 12, 2020 @ 8:49 PM
OH MY!!!!!!! Just the WORD KEPPRA SENDS CHILLS DOWN MY SPINE!!!!!!!!!! I completely wholeheartedly I promise!!!!!!! I never went on KEPPRA but I did try toperimate and it sounds ALMOST SIMILAR TO KEPPRA!!!!!!! My husband and children said “THEY HAVE NEVER EVER SEEN ME SO MEAN AND SHORT TEMPERED BEFORE!!!!!!!”. I thought to myself NEVER AGAIN WILL I DO THAT YO MY HUSBAND, CHILDREN AND MYSELF!!!!!!! So a change in medications it’s self I will admit SCARES THE BLEEP OUT OF ME!! I’m sorry you had to go through that. I hope everything is getting better now. 🙏🏼🦅🦬❤️😊
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Comment by Kathy S.B — December 13, 2020 @ 11:33 PM
Thank you so much for your insight I have been limited on doctors I can see but fortunately I will be getting Medicare in March so hopefully I can find some better specialists….I’m on disability which effects my self esteem…. I was a hairstylist for many years and issues with my hands and wrists… I also wonder if some of the chemicals I worked with added to my problems…anyway I’ll stop going on and on…thanks again for your help…so glad we have this platform to share our issues it makes me feel like I’m not alone in my struggle ❤️
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Comment by Jody — November 13, 2020 @ 8:35 AM
You know Jody, perfumes like those found in hair care chemicals and the like, CAN be seizure triggers. Which is an unfortunate effect of your profession.
Medicare will help with the doctor and drug costs, but they’re very stingy about counseling. So you’ll have to be a bit persistent on that point. (One of my therapists takes Medicare, one doesn’t.)
But you’ve made it this far, Jody. I have faith you’ll succeed, and find your way through the darkness.
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Comment by Phylis Feiner Johnson — November 13, 2020 @ 10:28 AM
I just received an email from Love Your Brain Foundation, a support group for us brain-damaged. It included an annual report with the notation that the report contained a mild animation, but if you’d rather have the unanimated pdf, click HERE. Brought tears to my eyes. Finally, someone gets it!
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Comment by HoDo — November 19, 2020 @ 4:46 PM
Link?
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Comment by Phylis Feiner Johnson — November 19, 2020 @ 5:06 PM
loveyourbrain.com gets you the web site. I could forward you my email.
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Comment by HoDo — November 19, 2020 @ 6:14 PM
Super. Thanks.
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Comment by Phylis Feiner Johnson — November 19, 2020 @ 8:51 PM
I REALLY MISSED ALL OF YOU!!!!!!! I just wanted to say “THANK YOU SIMPLY FOR BEING WHO YOU ARE!!!!!!! And from me to you all I DO GREATLY APPRECIATE EVERYONE ONE OF YOU AND MY HEARTFELT THANK YOU TO YOU PHYLIS JUST FOR BEING WHO YOU ARE MY FRIEND!!!!!!! PLEASE TAKE CARE OF YOURSELVES AND PLEASE BE WELL!!!!!!! 😊🙏🏼🦅🦬❤️🦬🦅🙏🏼😘😘😘😘😘😘😘
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Comment by Kathy S.B — December 8, 2020 @ 2:25 AM
Thank you, Kathy, for being here and responding!
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Comment by Ed Lugge — December 8, 2020 @ 2:12 PM
Goodmorning Ed 😊 your very welcome 😊. Please have a very good safe blessed day today and please take care of yourself 😊🙏🏼🦅🦬❤️
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Comment by Kathy S.B — December 15, 2020 @ 8:37 AM
I have an up/down story to tell you about today, December 8.
On the down side, I grew up with a mother who had pancreatitis. She was bedridden most of the time so I had to rely on my sister who was 14 years older than me to fill in the mother role. She did a great job bending over backwards for me. 46 years ago she gave birth to my nephew but complications developed and she had to stay in the hospital. I visited her as often as I could because I never got tired of looking at her smile and talking to her. Then one day I left her room at 4:00 and later that day my brother told me she died at 4:20. I lost my idle, my best friend, my fill-in mother.
On the up side, today is that sister’s birthday. She would be 77. Today is also the first date they gave me for my surgery. When I heard that, it boosted my confidence like you wouldn’t believe and I was now looking forward to the day. Later I heard the surgeon couldn’t make it and we had to move it to December 11 but I just kept in mind that my sister’s birthday was the original day. Besides, it’s great to have more “Dates to Remember” for the right reason.
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Comment by Ed Lugge — December 8, 2020 @ 2:16 PM
Clearly an angel was looking out for you, Ed.
How wonderful to have had such loving care in your life and those memories that go along with it.
They will live forever in your soul.
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Comment by Phylis Feiner Johnson — December 8, 2020 @ 2:23 PM
Yesterday was a day I’ll always remember. I remember getting ready for a 9:00 surgery then I see it moved back to 10:00 then 11:00. I’m cracking jokes to the nurses and one asks me if I know what’s going to happen that day. My only nervous time lasted 10 seconds. They said, “Mr. Lugge, we’re putting you under.” In the meantime, I was asking my mom who passed away 25 years before that to help me. I wake up with a 3-foot square sheet over my head and I’m being asked to count to 25. I’m getting aggravated a few times when I can only count to 2 as they test the cells. Back to sleep again and I wake up to see my mother-in-law and since it’s her and not my mother, I know I survived the surgery. Instead of the usual 24-hr stay in ICU, they’re wheeling me out after 12. As they’re taking me to my room, I meet my epileptologist who asks me to squeeze his hands then asks me what the square root of 7,450 is. It took me longer than usual but when he heard me say 86.3, he was happy. The next day they tell me I can walk around the floor and asked if I needed help. I said no and later after I completed my 3rd round, they asked me to stop because I’m making them nervous. The surgeon’s assistant tells me I did great and I’m free to drive when I get home (but I knew better). Then I see my epileptologist who tells me I have to wait until April (6 months since my last seizure) but then tells me I can go home after three days when I thought it would take a week. I call my wife to tell her about it but she tells me to stay another day. I call my brother for a little support but he backs my wife’s decision. The day I’m going home arrives but there’s sleet and snow on the roads. I had my worst headache as my son drove me home and it’s two hours instead of one to get home. I have two sons home from college and one from high school for winter break so I have plenty of help when I need it most.
This all leads to 20 seizure-free years which is more than I expected so that’s why I’ll never forget it.
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Comment by Ed Lugge — December 12, 2020 @ 12:58 PM
Clearly you had angels looking over you, as I said before. And an undaunted spirit and bravery.
But c’mon. The square root of 7,450? I couldn’t do that with a gun to my head. With or without surgery!!!
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Comment by Phylis Feiner Johnson — December 12, 2020 @ 1:04 PM
Oh, I forgot to mention what happened last night. I got invited to my son’s house for dinner. He had a meat lover’s pizza ready which he knows I love. As I started eating, my grandson started singing happy birthday because I told him a new grandpa was born 20 years ago. The other grandson kept asking me to open the envelope so I did and it said “You Did It” “Congratulations!”. Then I got gifts (a lego train, some baseball cards and M&M’s from my grandsons). My son gave me a Yankee hat (I’ve been a Yankee fan ever since I could say “Mickey Mantle”). Then my daughter-in-law asked me how I felt and I told her I did all of my crying earlier today so I felt pretty good. Ever try to explain brain surgery to a 6-yr-old? He wanted to know why I had the scar and why it looked like a question mark. I told him, “They went inside to find what was causing my problem and took it out. It looks like a question mark because I often wonder, ‘Why did I do this?’ and the answer is ‘Because I needed it.'” Then we had a big cookie for dessert. I got a call from another son who had a lot of nice things to say. We had a great night, went home and I had no problem sleeping last night.
This will be another event I’ll never forget.
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Comment by Ed Lugge — December 12, 2020 @ 2:24 PM
Oh Ed, what a wonderful story and what a terrific family you have.
I like the explanation of the question mark scar best.
My friend Charlie used to have the same sort of scar and wore his hair very short. (Like a buzz.)
One day, I ever so tactlessly asked him why he didn’t wear his hair longer, to cover his scar.
His reply was: “That scar is my badge of honor. Whenever someone asks me about it, that gives me the opportunity to explain a little about epilepsy.”
Charlie was a prince among men. Unfortunately, he died five years ago. I still miss him every day.
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Comment by Phylis Feiner Johnson — December 12, 2020 @ 3:21 PM
I’m sorry to hear that about Charlie but he sounds like my kind of man. I have my buzz because I’m proud of my scar. First time I see a bald spot I’m going to shave it so you can see the scar clearer.
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Comment by Ed Lugge — December 12, 2020 @ 4:29 PM
You GO boy!!! 🙂
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Comment by Phylis Feiner Johnson — December 12, 2020 @ 6:01 PM
One more story…I promise.
We didn’t get to have the usual family Christmas this year but there was one thing associated with it that I didn’t want to see stop. Two years ago we changed our small gift exchange to just giving cash and making a contribution to a good cause.
The first time we gave $440 to a cousin who was going back and forth from IL to TX for cancer treatments. Last year we gave $370 to a foundation that does research for pancreatitis. I’ve been in charge of this so I made the decision for this year.
Since this is the 20th year since my surgery and last seizure, I sent an email and asked that we donate to the Epilepsy Foundation. Since we weren’t getting together, I asked my brothers and a sister-in-law to collect from their family and I would collect from them.
I was getting responses through emails from family far away. Yesterday I went to collect from the brothers and sister-in-law. In return, I was giving them some of my potato salad that I make every year and each donor was getting four lottery tickets…like I gave to my bowling team earlier.
Well, the donations this year reached a total of $963, more than the last two years put together. One of my brothers said, “You mean a lot to our family. I’m not surprised.”.
I once again feel very fortunate for what has happened to me after a long struggle. Now 2020 will be like a fairy tale – a rough start and a happy ending!
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Comment by Ed Lugge — December 26, 2020 @ 11:29 AM
Funny, Ed. I do the same thing every year. I don’t give any gifts in return (except my thanks), so I’m not as generous as you. But, on top of family gifts – which everyone now automatically gives me each year – we make our own donation.
And that is the best Christmas gift of all.
P.S. I think donations this year, made before 12/31, are being doubled from some outside donors!
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Comment by Phylis Feiner Johnson — December 26, 2020 @ 12:34 PM
The gifts I give back are a symbol. I just wanted to see five years seizure-free but I saw five then 10 then 15 now 20. The best way I found to describe how I feel when something like this happens is comparing it to winning the lottery over and over again.
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Comment by Ed Lugge — December 26, 2020 @ 8:39 PM
Just knowing you, your story, your courage, and your generosity are like winning the lottery over and over again.
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Comment by Phylis Feiner Johnson — December 26, 2020 @ 9:51 PM
Phyllis, I read your post on doctors distracted by technology. I would like to know how to find out if my doctor was distracted during a brain surgery?
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Comment by Lisa — December 28, 2020 @ 5:18 PM
Lisa, I haven’t a clue. Look at it this way: you were under and few people will rat on their (superior) colleagues. Sorry.
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Comment by Phylis Feiner Johnson — December 28, 2020 @ 5:21 PM
Well, back in December, I lied. I said that was my last story and I have one more.
A man grew up with epilepsy which caused a lot of problems in his life. He still had enough control of his seizures that he could hold a job but it didn’t stop losing his license from time to time making it harder to get to work, taking his children where they needed to go and relying on his wife and friends for transportation. It was getting to the point where he was looking for ways (good and bad) to stop being everybody’s problem.
One night he gets a call from his mother-in-law. She’s watching TV and she’s seeing a woman looking into brain surgery and thinks he should watch it. He had just had the worst car accident he was ever involved in and since it was caused by a seizure, he wanted to watch the surgery. He sat with his wife, took mental notes and when it was done, he looked at his wife and said, “Well, can I do it?”
After getting her OK and later getting the OK from his epileptologist, he has a six-day VEEG which tells him he’s a candidate for surgery. He has the surgery, spends half the time in the ICU and hospital that he expected and goes home with a second chance at life. Six months later he goes in for an eeg and when he hears the results, they say there is no sign of seizures. Five years later, he takes the last pill he ever expects to take.
In a way, he just got the biggest gift he ever asked for so he now wants to give his wife her biggest dream…a new house built just the way she wanted it. After all, they’re living in a house built in 1904 that he bought from his father for just $20,000. By now, he’s convinced he will be able to work without the worry of losing his job and will pay off the house ASAP. Today he called the bank and told them he wants to pay the balance of the loan. Now they OWN their house and hopefully will live happily ever after.
Yes, HE is ME and tonight I get to tell my wife it’s “Our House”. 😀🏠
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Comment by Ed Lugge — January 21, 2021 @ 4:43 PM
Oh Ed. How wonderful! You both must be in seventh heaven.
I remember when Arthur told me he had paid off the mortgage, I cried. (I had been homeless at one point as a kid and this meant that I would never be homeless again.)
I think that’s the very best gift in the world. Other than good health. And now you’ve got them both.
YOU ROCK, ED!!! I’m so proud to know you.
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Comment by Phylis Feiner Johnson — January 21, 2021 @ 4:50 PM