If You're Going Through Hell

[Margm]

Sometimes they will make them do a sleep deprived EEG to get adequate results.  You have got to know it has been over 20 years since I typed these and got to look at the print outs and see the spikes and cannot remember what all they were called.  I do know they give them a flashing light exam during the EEG and sometimes that will throw them into a full blown seizure.  But the tests themselves are painless, like having an EKG, the electrodes are put on you just like with the EKG (on the head though) and you feel nothing.  They will just read the brain waves at different times with different reactions.  The sleep lab (polysomnograms) was part of the EEG lab and that was the most boring things to type, like watching grass grow.  Yet it must have been important because they would dictate four and five pages.  The only thing I remember for sure is they do not want to do an EEG until awhile after the first seizure. But they can control them.  There are a lot of different types.  The grand mal seizures I misunderstood and called them grandma seizures. I think they call them tonic-clonic seizures now.  The postictal state is when it scares you, they will have a seizure and then go into a deep sleep.  I held Brianna after one with Kelli driving 40 miles to the doctor and she was just limp.  I thought she was dying and then she just "came to life" and was normal. My daughter has a sleep study this Thursday.  Let us know how he is doing please.   

[Margm]

Sometimes I talk too much.  I know words, I do not know the deep meanings.  Gin, I hope things are turning out for the best.  Please let us know.  We need to hear from you and Butch.

I went to my class party.  You would be surprised how many husbands and wives still have their mates.  I was surprised.  We got through the hugging part, I talked to the women, I talked to the men.  I am terribly surprised at myself for detecting a bit of paranoia in my reflections on the visit.  The majority had been my playmates for 12 years.  Of course we were no longer that playmate age.  My cousin (boy) and I were very close and I ran around sometimes with boys.  I was not loose.  I was one of the guys. I was a "tomboy" but could be a very feminine tomboy if I needed to be. One said "You know, none of those other girls would come frog gigging at this time of night."  I even fished at night with guys. Hey, I liked things like that.  My reputation was not bad.  I mentioned before, I never had written on the bathroom walls "for a good time call ?????"  First time of seeing these guys in years and years.  Husband's and wives......no, the husband did not interest me.  I carried on conversations.  Nothing was ever asked about Billy.  At our age, I am not sure I would have recognized flirting.  It never entered my mind that someone might have thought I might be "companion" looking.  Honestly, if I want a companion, I will get a dog that does not shed too much. I definitely do not need their money, and they are not having mine.  There were no widowers there.  Some of my best friends were guys.  It hit me at that party that someone might have thought I was shopping.  I had never thought about that. That was far from true.  But, it was the first one I had been to in 55 years of them having it every year.  Shopping I was not doing.  Interacting with "kids" I had known when I was 17 was what I was doing.  Not sure I will go again.  I found out a lot of things I really did not want to know.  For one, none of us are 17 anymore.  I also don't go frog gigging at night anymore.  

[kayc]

I doubt I'll get to go to my class reunions because I can't drive at night and without a husband to drive me, I'm out of luck.  I see some of them on Facebook so I guess that will have to be enough...I live 1 1/2 hours from where I grew up and went to school.  It's hard to see everyone with their husbands still alive, I'm glad for them, but it's still hard, like why couldn't mine have lived?

[Brad]

I have no interest in going to mine.  My graduating class was 1,500 with 5,000 students in three grades.  Deedo and I went to my 15th reunion, stayed for ninety minutes and did not see one person I knew or even a name I recognized.  

[kayc]

Brad, that's what my graduating class was!  You didn't graduate from South Eugene did you?   The ones I've wanted to be in touch with I haven't been able to locate, and my best friend from high school passed away a few years ago.

[Brad]

I haven't kept in touch with any of my classmates since graduation.  Growing up in a predominantly LDS community I traveled in a different direction than the majority of people I knew.  I did have one friend look me up years ago and we emailed for a bit but then he started sending soft porn and I severed ties because I didn't want Deedo exposed to that stuff.

[scba]

My two reunions were ackward. I am the only one who left town and nobody seemed to be really glad to see me again and talk was like are you married where do you live. It was nice to remember old times but Iwas not interested in their present life. Now, with what happened to me, I wouldn't dare to go, what I would say and talk about? I will wait until I'm 60yo LOL

[Cookie]

John and I went to my 20th high school reunion, which was less than satisfactory.  It was like being back in high school.  I was not in the in crowd and people were pretty clicky at this thing.  Now the interesting thing is that I went with John to his reunion and had the best time ever.  He had several guy friends who hung together in high school pretty tight and they sat around telling some of the funniest stories I ever heard.  I laughed most of the night.  I think the magic was that it wasn't my reunion.  My 50th is coming up in a couple of years and I can't believe I've considered going to it.  I guess that is what grief does to you, makes you try anything to distract yourself.....Cookie

[Gin]

I am very concerned about my grandson and his recent diagnosis of epilepsy.  He is on an anti seizure drug called Keppro.  I read of the side effects and they are not good.  He is very down about the whole thing and wants to find some alternative treatments.  He went to a neurologist who did not explain things to him or give him much hope.  The doctor looked at his watch and gave the impression that he wanted this visit to be over.   My daughter is looking into seizure specialists at a different hospital, but there are insurance issues.  He also started a new job a few months ago and does not like it at all.  A lot of things are closing in on him and I hope depression does not grip him (one of the drug side effects).  I don't know how to help him.  He is only 24.  I just text him every day or so to let him know I care.  

[Margm]

Gin, my son is bipolar and had just been diagnosed with hep-C.  The treatment caused severe depression, so he elected to wait and almost waited too late.  He had the year of treatments and it was not pretty.  We had him living with us to be there for him and to take him to the VA where he gets his treatments and other medical needs.  It was like going through chemo with a cancer patient, and cancer of the liver is one thing he has to watch out for now.  Honestly, sometimes VA treatment is wonderful, sometimes it is bad.  But, we had Medicare and our group retirement insurance with our former employers, the State of Louisiana.  Like I said, he made it through the treatments, but it was a year of living hell for him, and knowing this, for us too.  His VA treatment is as good or better than we get with insurance we have had since retirement and sometimes it does not matter what kind of insurance you have, sometimes they let patients with good insurance die in the ER just waiting for treatment.  Unfortunately, I know this too well. 

I have not read up on the Keppro, but by law they have to tell every side effect that has ever been reported to a medicine.  One of the side effects of penicillin is a black hairy tongue.  In my over 40 years of typing symptoms, it was only in my last year before I retired that a patient had a black hairy tongue.  It is good to look at side effects, especially if you might be allergic to some ingredient in the drug.  But, all of those side effects do not happen.

They give out antidepressants like candy now, but some of these can cause diabetes, among other things.  All but Wellbutrin cause weight gain, except maybe the newer ones.  A second opinion is not unheard of, or maybe even a third.  And, a doctor that is looking at his watch is probably one that has been given 15 minutes to be with a patient.  This happens.  My daughter was a nurse and there used to be some very caring internal medicine and family practice doctors..  I worked part-time for three family practice docs.  One saw probably 15-20 patients a day.  One saw a few less and the one who had long hair and a beard and looked like Jesus, he took as much time with a patient as he needed.  He might not see but five patients a day.  The internal medicine doctor my daughter worked for, everyone wanted to go to him.  He was thorough, caring, and took time to know the patient.  Well, he was not making as much money as his partners who might see 15 patients a day so they started timing him and the other doctor I worked for to 15 minutes to each patient.  You can still find a caring doctor, but you might have to shop.  Good luck with this and let us hear how it goes.

[Gwenivere]

Can't imagine going to a reunion to see people I didn't like then.  I was so happy to leave them behind.  

[Widowedbysuicide]

Take care Gin.  Thinking of you at this frightening time and hoping you will find some peace soon.

I am wishing for a Christmas miracle for all of us.

[Margm]

You know that you have to do something
but remembering what it was
Sometimes has to be left to one second ago
because it does not exist in this moment.

Yesterday I stepped down from the day before.  We are supposed to be going forward.  I had/have things I have to do.  I have business still that I have to take care of.  I have three other "family units" that I need to help, but the enablers that Billy and I were together has halved.  I am wrung dry.  Yet, I know I cannot let any go hungry just because they are too intelligent to take care of what has to be done.  We no longer have the big house that was a revolving hotel.  They are all facing a crises I cannot handle.  Sometimes you do have to just let go and they have to see the well is dry.  It is a lot harder not being able to help than it is to help, but you really cannot get blood from a turnip.  

Yesterday morning my mind just wanted to protect itself by sleeping.  I don't do that. I do not sleep in daylight.  I have dream amnesia, but still I have woke up mornings knowing I had dreamed of life with Billy, friends we had known, just carrying on daily life, sometimes not making any sense.  Dreams don't have to make sense, but Billy being in them was a taken for granted thing, not a miracle, just everyday life.  I will take that.   

In the meantime I really do have "promises to keep and miles to go before I sleep" and we don't know when that might happen, but somehow, if given time, we have to prepare for it so we will not be a burden on those left behind.  I never thought of life like that, sometimes if you have time, you have to prepare for being gone.  

[Gin]

Marge,you sound awfully down and I sure hope things perk up for you.  This is a hard time of year with the holidays.  Al and I used to decorate a lot, make our own cards and entertain.  Now all I could do was plug in the fiberoptic tree and try to find room for the manger.  It is hard to do anything with half of ourself gone.  You have extra with so many depending on you.  Hope things calm down for you.  

Gin

[MartyT]

9 hours ago, Marg M said:

Sometimes you do have to just let go and they have to see the well is dry.  It is a lot harder not being able to help than it is to help, but you really cannot get blood from a turnip.  

Yes, Marg, sometimes it IS a lot harder to just say "No" ~ but you are not a rescue squad, or a hotel, or a bank, or a grocery store ~ and your first obligation is to take care of YOU. If you don't do that, you won't be able to help anyone else. Please let it be okay with you to put you first (along with your precious granddaughter), and give your other family members the opportunity to learn how to take care of themselves. If you're not there to do for them, they will find a way to do for themselves.

[Margm]

1 hour ago, MartyT said:

rescue squad, or a hotel, or a bank, or a grocery store

And, that is what Billy and I have been all our lives.  Bless his heart, for the boy I married that was afraid of responsibilities, he sure had to learn fast and we put ourselves last the whole time.  Well, he left me able to take care of a couple of us very easily, but not everyone.  Takes awhile to get acclimated to walking with one leg you know.   

[Gwenivere]

3 hours ago, Marg M said:

 Takes awhile to get acclimated to walking with one leg you know.   

I've been finding this very hard as the holidays approach this year.  Even tho it's my 3rd, I so miss not having been able to talk about anything that has happened in the last 2 years with Steve.  That's a long time to 'live' hobbling along.  I wish I could make the holidays not matter, but too many memories of time together.  It's going to be tough waking alone even more so.  It was a day we woke up as kids again.  Not for gifts, for that special feel of a magical day you wait all year for.

[Margm]

I would get so excited that Santa never came on Christmas Eve.  One year he came December 9th.  Somehow, after the grandchildren were moved to California when they were 9 and 6, Christmas became ho-hum.  We still had it every year of course.  Still went to relatives for part of Christmas but they were all close.

I went to my friend's house the other day.  She had her table sat with Christmas plates, glasses, cloth napkins, silverware on each side of the plate.  Heck, my bunch always got Christmas paper napkins, plates, and plasticware with 16 oz red plastic cups.  

This year I will arrange boxes as tables to hold food, put a paper tablecloth on them and we will eat on TV trays.  We ditched the silverware and glass plates back in my aunt and uncle and grandparents times.

I see kids outside now playing with remote operated cars, three riding some kind of contraption like a board they put their feet on, balance and they have lights that surround it.  Battery powered boards.  (I sound like my grandma now), but looks like other parents did not wait till Christmas Eve.  My mom and dad might let Santa come on Christmas Eve, but usually it was the ritual of Christmas day and I have got to say, I always got what I asked for.  Mama would sit things up under the tree, books, paint sets, always a doll, dish set, fruit scattered under the tree and all kinds of nuts scattered with swirly Christmas candy.  

My daughter tried to start the times of wrapping every present from Santa for the grandkids.  I am the Scrooge. 

[kayc]

22 hours ago, Marg M said:

Sometimes you do have to just let go and they have to see the well is dry.  It is a lot harder not being able to help

Part of not enabling them is teaching them the important lesson of learning to take care of themselves and figure things out on their own.  This IS preparing them for when you're gone, and it's part of our parental role.  Yes it's easier to do for them, but not more prudent.  I'm glad you've realized all this, besides sometimes we do get too old and too tired to be responsible for everyone else!

[Margm]

Letting our kids grow up is necessary, but hard.  Forgetting a sister, or father or mother, letting them suffer is not something you can teach them.  And, you cannot sit by and watch them starve to death or suffer.  You do what you can, and then when you cannot do any more, you suffer with them.

[marsha]

Dear Marg, yes, but you cannot suffer FOR them. Each has to deal in his/her own way. 

[mittam99]

I've had a tough last week or so. This time of year is so painful for me. It used to be a fun time of year... Christmas, our anniversary, Katie's birthday...

I've been very depressed. Sleeping most of the day. This life without my Tammy is just so very empty, so very lonely...  so very sad.

I'm in one day at a time mode, and hopefully, things will lighten a little. 

[Widowedbysuicide]

So sorry you are having one of those big grief storms.  I wish there was something that I could say to ease some of your suffering.  If your grief is as deep as your love for Tammy is I believe that what you are feeling is nearly crippling you.  I don't understand why this part of life is so cruel.  I pray that Tammy's love for you will soon be more evident in your life and with it the comfort and peace you deserve.

I am holding you in my thoughts and prayers Mitch. 

[Gin]

Mitch,

Right there with you.  It is such a rough time for everyone.  I have no desire for anything.  Even my good friends have no clue.   Hang in there Mitch.  We want so very much to have our loved ones back.  We can't.  One friend told me yesterday that obviously I want to be alone.  I declined an invite for dinner with her and her husband.  I do not drive at night and do not relish being the third wheel.  It sure is hard to fit back in this world.  Hope things look up for you soon.

Gin

[MartyT]

I'm so sorry, Mitch, that this time of the year is so painful for you ~ as it is for most of us who are mourning the loss of our loved ones. Is it possible, as you go through these special days, to find a way to nurture and embrace those precious memories of past Christmases, anniversaries and birthdays ~ seeing them as a reflection of your unending love for Tammy and an opportunity to maintain your connectection with her? Perhaps through some sort of ritual you could construct, that would call to mind something you and Tammy would do together this time of year?

Our friend Elaine Mansfield (whose beloved husband Vic died in 2011) is an expert at connecting through relatively simple rituals of her own making, which she uses this time of year "to balance the grief I felt with Christmas coming."

See some of her  blog posts:

Solstice Blessings: A Family Ritual of Remembrance and Love 

Winter Solstice: Rituals of Grief, Hope and Laughter

Creating a Grief Ritual: Love, Loss and Continuing Bonds 

♥