EEG From H-E-double Toothpicks.

This quilt is FINISHED!!  I haven’t spread it out to take a good pic, but I will soon.  My friend, Claudia, put the binding on for me.  I can’t handle the struggles of doing large bindings.  Thankful she will.

These last 3 days has been hell for me.  I am severely claustrophobic.  So severe that I panic taking off my shirt if I get caught up in it.  I had a dozen electrodes attached to my head with a very thick gritty paste.  Then they taped them down, and finally taped a ‘cap’ of tape over it all.  They attached electrodes to my chest and woes were everywhere.  Finally, they attached all the wires to a heavy ‘purse’ that I had to carry for all 3 days.  When I wasn’t in the bathroom, I also had to have it all attached to a computer pack, which I sat on an office chair to roll around, with a camera filming and facing me.  

Then this:  Techs messaging to have me “press all over my head”, “press the front”, “press the Rt side”, “press the entire head”, “press the main sensor”, “don’t move!”, “I think this unit had the same problems last time”, “plug in”, “press top of head”, “press gently please”, “press hard please”,  “maybe you could just sit for the duration of the test”.  Be sure to write when you eat, when you sleep, when you nap, when you take meds.  “The glue in your hair is the worst part of the test - getting it out!”  “Could you press the front please?” “Not that one, see the green one on the screen?  That one”. (But I can’t tell, there are dozens on my head).

I just have to say, by the time I got to the end of the three days, my anxiety was through the roof.  I had slept as best I could, but rest was slim pickin’s. That camera on me 23 hours was freaky.  All of it together with the messages and calls threw me over the edge.  Seriously.  Then came getting the crap out of my hair!  Finally done, I am left with blister sores all throughout my hair.  Look closely at my temple.  My entire head is sore and bruised - and my ‘normal’ headache is a miserable and a sore headache.

But God is good.  I saw this tonight when I walked out the back door to take the next picture.

      

Praying that this awful test answers some brain power questions.  Never want this test again!

 

OHCE and Me

This morning I went with our amazing group of Holiday Hills OHCE ladies to the Claremore Museum of History.  What a wonderful tour!  The tour guides were terrific, the museum very informative.  

It doesn’t matter what we do together, whether it is meetings or touring interesting places, we have a great time.  Each of the ladies are very special to me.  Each have their own spark of talent and laughter.  This last year we have lost some dear ones, but even though they have passed on, we still love the memories they left behind.  ❤️

             This is Mrs Peggy and her dear daughter Valerie. 

 Valerie isn’t in our group, but Peggy is.  She has been a member of OHCE for 50+ years!  She is a hoot!  Her birthday is in June, and she will be 90.  Valerie came so we could celebrate her birthday early - and treated all of us to our meals!  Peggy got several flowers and we had a cake made for her.  Celebrating such a wonderful lady was a pleasure.  

This was me at 1pm.  My neurologist is trying to figure out what is causing my rigors shaking.  She took one look at me videos and confirmed they are not normal essential tremors.  These wonderful wires will be in me until Sunday at 1pm.

So this is me after all the wires are attached and they are secured so the will last for three days.

It isn’t going to be fun, that is for sure, but it will be worth it I’d the can figure my shaking out.  I am not allowed to leave home and I am being recorded everywhere except the ‘necessary room’.  No showers, just sponge bath.  This is (not) going to be fun.  At all.  I am smiling because - well, what else can I do?  

My Bestie’s Visit and Easter

My bestie, Sharon, came back from Indiana, where she now lives, for a wedding.  I got to eat lunch with her and spend a few short hours with her.  I absolutely love this woman, she has a heart of gold.  We spent the time catching up on families, and we actually caught one fabric store!  It made me realize just how much I miss her, but I do understand that she, like us, had to do what was best for her family.  Doesn’t make my loss any better, but I need to remember we are just a phone call away!  

I forgot to get a picture, so I pulled up another to share.  ❤️

I was not mentally ready for Easter.  I struggled even pulling it together, but Thursday, I let everyone know that we would be cooking ham.  I bought Stoffer’s Mac and Cheese from the freezer section, peeled sweet tators, added butter and brown sugar, bought pre-made rolls, pre-made pecan pies, and made (!) Aunt June’s apple salad.  Everyone came except Cheyenne, who is in California on vacation, and Raelee who was working.

 Liz got a call from Jessica Saturday that she was in the van, moving her family from Arkansas.  She left everything she owned that didn’t fit in the van in the place she left.  Again.  I don’t understand leaving all your possessions behind, but the rest of this family apparently thinks it is disposable and replaceable, because it is a common occurrence.  

Anyway, she is coming with 2 boys and a boyfriend.  Her 5 year old daughter is riding in a truck wherever her dad has runs.  I guess she comes back to Jessica when he is near.  They are temporarily staying with my sister and it seems to be working well.  He is getting a job soon and the boys are well behaved.  

Anyway, the rest of this story is that all of the family joined us Sunday.  I also called a neighbor who brought her boys over.  We had a full house with KIDS to decorate eggs!  And boy did they come out pretty!

Steph and Todd looked great!

Ari (formerly Aedan) and Jeremy looked great!

My neighbor and her boys had fun:

Jessica looking at her boys:

And here is the whole kit and kaboodle, minus Cheyenne and Raelee. 😢 - and our neighbors.  

Tim, Alex, Jessica, Gavin, Alex (Megan’s significant), Megan, Thomas (Liz’s roommate/friend), Liz, Jeremy, Ari, Jaci, Todd (awww), Stephenie, me and Red.  Inside Colette (Liz’s other roommate) was resting.  Taking pics was Adrianne, with her boys Patrick and Dillon.

It went well.  I enjoyed the entire family, the kids, decorating eggs, and yes, I was exhausted, but not sick exhausted.  We might be able to live on some store bought foods instead of me cooking.  😂

The house was full and I felt so blessed.  Megan, Jaci and Jessica were all here.  There is lots of healing, but we were all smiling and laughing.  Jessica seems like a great mom, is attentive to the children and corrects them with love.  She just needs a to catch a break.  She needs good, solid support; mentally, and financially.  She is strong, and will get it all figured out.  I hope she had found her landing zone.  Liz has enjoyed having them.  

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My PA informed me that I must mourn my old life and leave it behind, otherwise I will be setting myself up for 100% failure.  This is a new beginning.  I have to except I cannot be who I used to be.  My physical limitations are beyond my control.

But, I missed church.  I struggled with that, but there were going to be a lot of people and children because they were having an an Easter Egg hunt.  I saw germs.  I couldn’t make myself go - the risk of getting sick was real.  We did watch it on the website though.  All of it.  ❤️

Lambs, Fires, Farms and Quilts.

This blog post is purely randomness.

We have found some friends that we have a lot in common with!  They ride motorcycles, they camp, they travel, the guys get along and we girls sew, cut up and laugh.

We sit by the campfires and listen to funny jokes.

And we are traveling to Colorado this summer to ride motorcycles.  ❤️

Mrs Betty, a very dear friend, crochets.  She makes absolutely adorable animals, beautiful shawls and afghans… she can do anything!  She is amazing.  I love her and admire her talents.

So Mrs Betty came in to an OHCE function we had and brought with her this adorable sheep.  She was laughing when she brought it to me.  I absolutely fell in love with it.  Mrs. Betty said, through her giggles, “Turn it around!”  

I reached to turn it around…

And this is what I saw:

Mrs. Betty said, “I finished this at midnight adding the last leg.  

I was tired.  I looked at the leg and (pointing at the leg) I said, well, it will just be a dancing lamb!  Then I looked again and said, no Betty Lou, he is peeing!  I laughed so hard I was almost crying!  My lamb is PEEING!! ”  

What a hoot she is! I love her sense of humor.  

What a moment to treasure.

I am finished with this quilt.  I will post about it at the end of the year.  Stay tuned!

A close-up of the square:

This is the one I am presently working on:

And this is the end of our day on the farm:

 

History - Theirs and Ours

I went to an estate sale a few weeks ago (you can act surprised here), and I came across a scrapbook.  Loving both scrapbooks and genealogy, I had to check it out. 

It was called Scrapbook of Death!!  Goodness!  An entire scrapbook of obituaries, newspaper articles and stories of how people died!

                  

Many of the names in it were the last name of my friend’s family, so I offered $20 and they accepted.  I shared the book with her today - I think she is enjoying it:

I also shared it on a history/genealogy Facebook site for the town the articles were mostly about; Sperry, Ok.

And I am a member of ancestry.com

So I had a cousin-ish get in touch with me.  She had found our Aaron that we lost!  His name was not Nimrod, like ours was - it was Himrod!!  She sent us the book with all of the documentation!

Apparently there was a mixup in how to spell our name - but we are keeping the incorrect spelling I reckon.  We grew up being a Nimrod and will continue to treasure the name.  

*********************

How am I feeling?  Well, 2 days of antibiotic, that Dr Me took, has take away the awful headache I had.  I am back to the dull one I have had for as long as I can remember.  GO ME!!

Since my fall I have had some pretty bad memory problems.  I will be tested for that in May - along with a 3 day eeg.  We will see how that goes, but I was just reading that Lupus can cause the memory issues as well.  

Well, dang.  I am doomed!  

Oh, no, I am not - I have God on my side.

Night/day/life!

Blah, Blah, Blah

 

This is my brother and sisters a few years back.  Just sharing a cute picture to take some of my anger away.

Same thing, different day.

First I had infusion migraine with a sinus headache, then I just had a sinus headache. Not a little one, a massive, good grief, awful one.  I had an appointment to go to my sinus Dr, so I sucked it up for nearly 2 weeks AFTER my infusion and I finally went in today.  

Steve goes in with me.  Dr tells me everything is hunky dory,  surgery was perfect, I healed nicely, and the CAT scan shows perfect sinuses.  He explains that he doesn’t see anything in my sinuses causing my pain.  He literally says he can do nothing else for me.  Yes, I got upset.  I know sinus pain.  

He saw I was getting upset, so he says he guesses I may have neuritis… and starts explaining how that could be my problem… and I saw instant fury.  I know what a sinus inflammation/infection feels like.  He is blowing me off like a million other Drs that I have gone to.  I basically tell him, “ok, thanks, I am outta here” and walk out.  *as Steve rolls his eyes*

Steve stays in there, apparently questioning about neuritis, messages me the name so I can be sure and update my neurologist, and I realize I had forgotten to tell him my ears and throat itched like hell last night - so much so that it woke me.  So I go back in to the Dr and ask what could cause that?!?  “Neuritis.”  Of course.  

“Everyone is coming in right now with green snot and itchy eyes, but they get over it… it is simply that time of year.  ”Everyone else has ICL?”  *Steve rolls his eyes*.  

“ICL?”   “You know, zero immune system to fight it?  Because I am pretty sure NIH says there is only a few dozen of us that has it and we can’t fight the green snotty noses.”  “Well, no…”.  “Because my body has zero way to fought any - even a small - infection - but you can’t do anything else for me.”  “If you think an antibiotic will make you better I will give you one…” as he starts typing.  No other discussion about what could be causing the headache except neuritis - which with Steve’s disgust of me - I sit through.  And he sends the antibiotic prescription in - the same 5 days he sent last time “because it worked so well”.

*Toss her a week’s worth of pills and make her happy.*  

Typical Dr, get the hell outta my office attitude.  He later says he can’t see down into the sinuses so I may indeed have infection there…Really?  Well, duh!  I think I had discussed green and yellow?  And the whole top 2/3’s of my face pain?  But I had to point out I am pretty sure I have a sinus infection and I have to be pissed to even get *that* response.  

He made every effort to impress my husband though by apologizing for my “misunderstanding” what he was actually trying to say - he was going to elaborate further and explain...  

I call bullshit.  

I will get a letter being dismissed from his practice next week.  Wasn’t planning on going back anyway.  Once you call me crabby and a difficult patient you can bet your ass I don’t need you.  You were pretty damned determined I was perfectly healthy and your surgery was the miracle cure.  It wasn’t.  Oh, it did help tremendously, but, Houston, we still have a problem.  I have a freaking sinus headache!

Together we mighta figured out what all was going on - like were one 5 meds I am shooting up my sinuses giving me the headache?  Wow!  There is a thought!  Did you bring it up?  Nope. 

So then on the way home, Steve tells me I had it all wrong.  I will give you a hint how that went... well, maybe not.  Of course he thinks the SURGEON (ENT) *HAS* done all he can do because “he is a surgeon!”  No, honey, he is also an ENT.  Ears/Nose/Throat Dr.

And the Dr apologized - because YOU were there.  Last time he sent me home with the same statement that everything was perfect, patted me on the back and sent me on my way.  This time he had a MAN there to impress.

It was a miracle how Steve stayed in there supposedly asking about neuritis (which I may have a mild case of - but this headache is not that) - then miraculously the Dr acts more concerned when I storm back in.  Like he gave a shit THEN.

I came home and opened my own damned medicine cabinet and took an antibiotic - like I should have done in the first place. 

Give me two days and I will tell you how that is working for me.

Back to the prairies where the fairies are dancing….

Reality Is Sobering

I have finally realized what I have failed to acknowledge since I stared these infusions:  I cannot do anything at all on day 2, and very little on day 3 after infusion.  I am also of the opinion that the mass Primary Immunodeficiency group is correct in that, and also that I must continue antihistamines for several days after infusion.  I am still suffering from Infusion flu and migraine.  Day 3 post infusion.  4 if you count day of… let’s see… it has only taken how many years for me to concede?

Here is something cool…  our granddaughter lives in her own apartment, pays her bills and works at Sonic.  She is 18 and does all of this!  Now she is saving for land to put a tiny house on.  Enough bragging… she had gone to an estate sale several years ago and got a Sonic menu sign, complete with pole, from the 70’s.  She has it standing in a corner of her living room.  Well, a few days ago, she saw the guys, that are remodeling her Sonic, dragging this sign to the dumpster and she rescued it, put her name on it and hid it.  Isn’t it cool?  She said she (papa?) is going to hang it in her apartment.  I think I love this kid!

I just wish I had the opportunity to know my other grandkids this well.  The boys love computers.  

I have been so sick that I have just been trying to work on my crumb quilt and today I was too sick to do that, so I started cutting squares to make hospice quilts.  Our church has been asked to do make them.  By cutting squares, I can cut squares, then rest.  

Cut.  Rest.  Repeat.  I do doze a lot, too.  

This headache and flu (both from infusion) is miserable.

And now I rest.  Good night world.