Hospice Donation Quilt 1

Our church ladies group, United Methodist Women Stitchers, pick projects to sew for the community. We have made Veteran’s quilts for all of our members, we made book bags for the local library’s summer reading program, and recently, our leader was contacted to make lap quilts for hospice patients.

My friend, Brenda, found a pattern and we both decided to do it using different fabrics. Here is mine:

I will finish it with beige backing and using the “quilt as you go” method. I will start doing that next week at our Thursday meeting. I have some other things to work on prior to that.

Steve and I were walking around the pasture checking fence line and Jake, or ‘puppy’ casually led us right to a tree and looked up. A closer look showed us a raccoon, hiding as best it could by trying to melt into the bark. Fun times on the farm. 

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Struggling terribly today. Sinus infection flare from you know where, and my emotions are all over the place. I get so tired of the constant battles. Yes, I keep going, but some days, today being one, I just want to cave and give in. There are too many obstacles in my days. I will not give up, but sometimes, it is tempting. BUT! I have to make more Hospice Quilts. Someone, somewhere, needs them.

This… Last 3 Days…

I had my monthly infusion on Thursday. Everything went fine!  No migraine, no nausea! As my nurse was de-accessing my port, she asked me if I had gotten both of my Evasheld shots - she explained it as vaccines against Covid that only Primary Immunodeficient patients could get. Not ever hearing about it, she stated that “we need to get that in you, I had zero reaction.  You need them, let me go draw them up.” Off she went.

I got 2 registered vaccinations, one in each arm, and off I went. I generally sleep the day off as I have to take 4 antihistamines to take my IgIV, so when I came home, I sat in my recliner dozing. Later in the evening, when I closed my eyes, demons would be there!  People out to slay me. Terrible flashes of horrible stuff! Of course I would startle and open my eyes, try to watch tv and doze again… same thing happened!

Finally, it was time to go to bed. I would doze, startle awake and repeat. About midnight, I started itching from the core of my body.  No rash, but a terrible clawing itch. I swear, even my ears - deep inside! It was awful! Between the hallucinations and itching, the next two days were miserable! I snuggled with my cat all 3 days.  She loves to ‘hold hands’ - isn’t that sweet?

My Dr has Covid (he is at home) so I couldn’t bother him, and his nurse was on her weekend, so I didn’t bother her.  I do have a Primary Immunodeficient friend, who also has weird reaction to meds, and I was so tired and sick that I couldn’t think straight, so I messaged her asking if she had any ideas.  Thankfully she did, and together, we figured out a plan of action, and 6 hours later I was coming around.  Today I woke up back to my normal - which we all know is definitely not normal!  🤣

Thank God for people in my corner!  This was the most terrifying reaction I have ever had - and now I think these damned Covid vaccinations are injecting… well, I don’t know what the hell they are putting in me, but never again!  I went to church today to pray the demons out!  Gads!  What a scary 3 days!  And shame on me for allowing her to dive in and give me the shots!  Shame on me for trusting her!  What was I thinking?!? I react to every medication in a weird way - why did I think THAT would not affect me?

‘Nuff about that… Today was our preacher, Dylan’s, last day.  He has taken a job in El Reno, so his wife and year-old-twins are heading out Thursday. We are getting a new preacher from Newkirk.  I pray we love him.  Looking forward to changes.  Shuffling the deck is often good - brings new blood, new ideas, new friends.  Praying that is our case this time.

That is all today.  Later!  Going to celebrate our children’s father - love that guy!  🥰

Psycologist Tests Today

Thank God it is over.  

7 hours of puzzles, tests, questions, digging up my past... again... there is absolutely no way to explain it.  "Why?"  I try.  "Wait!  What?"  I try... "I am confused".  I try.  "Wait, I don't understand - weren't?"  I try.  "Wasn't that?"  I try.  "Who did that?"  I try?  "Didn't you say this?"  That was then, then... I try.  "Wait, I am confused"... I try.  "You raised who?" I try.  "They weren' yours?"  I try.  "Who's were they?"  I try... "Why did that happen?"  I try.  "How did that turn out?"  I try.  "When was this?"  I try.  Jesus, it is difficult every freaking time I try to explain but there are so may twists and turns in my life it hurts to try to unweave them... again... and yes, it even confuses me. Did I have 2 kids?  Or 5?  Or 9?  or 14?  And how did that happen?  But what does this have to do with my brain, my fatigue and my memory?  I don't want to remember this crap again... and again.  I have moved forward.  Let me leave it behind.

Then he started asking why I think I am sick all the time, how much do I think I am sick, how truly sick am I, what can I do to get better, how do I get appointments to the Dr, do I call the Drs and tell them I am sick, or do I just go to follow-up appointments, do I feel sick all the time, when was the last time I thought I was well, why do I think I was never well, what Dr prescribed Adderall, why did they describe Adderall, who thought I needed Adderall, how often do I take Adderall, is that the only drug I take to 'ease' my fatigue?  Then do I drink, how much do I drink, how often do I drink, why do I not drink, don't I drink with my husband, do I drink with friends, do I drink with family, do I drink when I am alone, do I drink when I am working, do I drink without telling anyone, do I drink when I am sad, do I drink when I cannot handle my problems, do I cry, why do I cry, when do I cry, how long do I cry, does anyone see me cry, why can't I cry, why does crying mean you are weak....  OMG.  STOP!

You get the idea... it was a crazy and exhausting 7 hours.  I despise Drs acting like not ever drinking is a lie.  I hate that Drs think not ever turning to drugs is a lie.  There was a point in my life that I decided that there was enough BS going on in my life that I wasn't going to allow one more thing destroy me by my choice.  I never smoked, I never drank, I never was promiscuous and I was never a troublemaker.  I did everything possible to blend in and not be noticed.  I was honestly a stick in the mud, dug in and was not doing THAT.  And I didn't.  Don't act like I am lying about it - because I am not.

I hate Drs thinking I am a hypochondriac dreaming up illnesses to be sick with.  I don't WANT to be sick, but the fact of my life is that I AM sick.  100% of the time.  I try to be ok, I try to feel good, I try to be upbeat, but damnit, I am tired of the layers of exhaustion, brain fog, pain, lack of give a damn and energy.  More often than not, I am just trying to keep my feet in a forward motion and it takes too much concentration to look beyond the tip of my toe.  I often feel guilty about not being happy-go-lucky, smiling all the time - and I am aware that I am continuously withdrawing.  My husband has to deal with it all and as hard as I try to be positive, I fail miserably.  When I am with him, I don't have to be strong - he can be my strength - but, it isn't fair to him either and I am well aware of that.  I just do not see an out, one that helps us both.

Have I ever thought about suicide?  No.  Have I ever thought about just giving up and letting myself fall into a grave?  Absolutely.  Then I think of my sweet hubby, our kids, my family, the flowers, the grand kids, the travels - all the wonderful things God has given me... and I start putting one foot in front of the other again.  

Today has been a whirlwind of being apprehensive, thoughtful, confused, tired, angry, exhausted, dumbfounded, pissed, and just done moments.  Over done is more like it.  I don't want to 'go back', I don't want to try to convince another idiot that I am truly sick, that I never smoked or drank, I don't want to try to remember every freaking detail that led to 'that' and I don't want you to question the Drs that actually know my diagnosis and know ME.   And I certainly don’t give a rat’s last that you think my list of illnesses is a “trophy list”!  😡

I am proud to say that not one of the Drs that know me is less than amazed that I continuously carry on despite my odds.  They do not have any idea how I can do it, but they tell me I am truly a miracle.  I just tell them God isn't finished with me.

I drove an hour to the phycologist, I was in his office 7 hours with no rest and no lunch, I drove another hour home, I slept for 4.5 hours, walked outside to try to weed in my garden, got so fatigued I came in, ate a burrito, wrote this, and now, at 10:30 I am going to bed.

That was my day. All the 'brain' testing is done.  Now we wait 2 weeks to see what they say.  

And I will try to recuperate from the last week of Holidays on Parade, bike trip, testing and Mother's Day activities.  Maybe I will allow myself to rest and finish a quilt.

That is all folks.  I promise to get off this rant, because, I would rather talk about some fun stuff.  I have promised myself and friends to document how exhausting this life can be.  Primary Immunodeficiency, for us, is no joke. Absolutely no help in the medical world is exhausting.  We have to stick together, because it is truly just a handful of US.  Someday, maybe the world will look back at us and see that we were truly dragon slayers.

Keepin' On, Keepin' On. But How?

It has taken me a while to return - but here I am.  The EEG from you-know-where was by far one of the most difficult things I have done.  I am claustrophobic, and believe me, it was a tough few days.  Then the goup that gets in your hair is like a sandy paste, stuck for dear life, to your scalp - ground in your hair.  Getting it off was wash after wash, pulling, digging, scraping - I was flipping out.  I lost it, and just started bawling.  I am so tired of fighting battles.  This one, after being 'restrained' for 3 days, tied to wires, not being able to walk outside, with a little camera on me all the time, just about did me in.  Oh, well, I am finally over it.  Except my hair is now dryer and more brittle than ever and I have round patches of bald places from the electrodes and paste.  

Right after I get that hot mess off of my head, (1pm Sunday) I had to be at Faith Church at 5pm to help set up tables for an OHCE function that we were having Tuesday.  Monday was decorating, getting the kitchen ready and setting everything up like the stage, microphone and lights for the actual function.  Tuesday was Holidays on Parade - our scholarship fundraising deal we have every year.  We do have a lot of fun doing it, and I enjoy it a lot.  However, honestly, my body rebels big time with over 8 hours plus the previous days preps.

So, Wednesday, after the function and all the clean-up Tuesday, Steve and I packed, and took off on a bike ride with some friends for 3 days.  Day 1, on the way down, we were dodging rain the whole time.  A 4.5 hour drive ended up something like 7.5 - BUT we missed most of the rain.  We had about 15 minutes of light rain and several hours of a light misty rain.  We all had rain suits, so no one got wet, but it is kinda leery on a bike.  However, we made it fine.  

Day 2?  OMG.  I thought I was going to die.  As I have said here, I had an awful busy 6 days prior to leaving.  My body said, absolutely HELL NO WE ARE NOT DOING THIS.  I couldn't get on and off of the bike and I am sure I made an absolute fool of myself.  My determination to do it and my body saying it ain't happening were not showing my best side.  It was a very tough day.  When I finally gave in and went to bed, I rested and started day 3 off right.  We rode to the Wichita Mountains and found my grandmother's house on the wildlife refuge.  More on that later.  It was great!  The terrain there is amazing - very rocky - with HUGE boulders.  

We rode up Mt Scott, back down again and browsed around the area.  It was terrific.  I felt ok, not great, but I felt as good as I ever do.  I really enjoyed riding, laughing and visiting.  I think we have found our people.  They are all terrific.  I just hope they think the same about us.  Day 1, I am sure they were leery, but on the rest of the trip I hope they were reassured that I can do this.  

We made it home safely and, of course, I have crashed again.  I am trying to rest and catch up, but of course there was Mother's Day and this morning Punkin' asked us to come to her Roller Derby practice, so we did that as well.  Wow, was it fun!  An hour either way - which also tires me out.  What gives??

Again, how do I accept that I cannot do this?!?  I SWEAR my brain says, "Hell yeah!" and my body says, "HELL no we aren't!"  I see all these old ladies telling me all their aches and pains and I think, I can do this if they can do this!  I feel like I am letting myself get lazy - and I darned sure don't want to do that - so where does it end?  How to I tell if I am lazy or honestly cannot keep pushing?  Some days I do just want to throw in the towel - but I struggle to find footing and carry on.  And if I quit pushing, am I quitting?  Or am I salvaging what is left of my life and taking care of me?  

I don't know, I am lost.  I am tired and I am growing more weary every day.

And tomorrow I have my psychiatric evaluation to see if I am truly losing my memory or if I have something else going on.  5 hours of evaluation.  I oughta be fit to be tied at the end of it.

I go in to my Neurologist in 2 weeks to find the results of all this mess. I bet I can tell you already; everything is hunky dory - it always is fine.  No problems.  Wasted money.  But I hope for answers - like I always have.

More later on the adventures of Hogs and Gals.

             

Trouble Came Today…. 😂

 No time for blogging…  it is that time of year!  😂

The crazy thing I have found since moving to Oklahoma from Louisiana is that I can buy bulbs (little care and they multiply), plant them and… here is the kicker..  they don’t rot in the soggy ground!!  They actually BLOOM!!  I love flowers!  Especially flowers with scent.  Plants are ok, but flowers are my heart.

I even look at the backs:

And deep in the centers:   

                

Steph’s lilacs are blooming.  Mine are not yet, but budding, so very soon… for now, here are her pretties:

This below is a weeping dogwood, also at Steph’s.  Isn’t it breathtaking?  The 🐝 bees in this thing… thousands!  It literally hums when you are near it.

Thought I would share a closer look at the flowers:

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Today was my ‘top up’ day, my infusion day.  My nurse came in late, so we started late - which means we finished late. They have been running my infusion at 43, but I have had infusion migraines for a week after.  Today, my Dr came in early and told them to start me at 30 and top up at only 35.  So far, much better.  Sure made for an extremely long day though.  If I don’t get the migraine, it’ll be worth it.  

So I did blog a little bit, but now I need to rest.  Ta-ta for now.  Dreaming of bulbs here.  Those are the best gifts ever!

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.  

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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.

Today Sucks, but the Quilts were Great

But I got to go see beautiful quilts in a class, so there is some redeeming qualities…

This was my favorite:

            

It was dresses made with the presenter’s grandmother’s housedresses, her mom’s dresses and her childhood dresses!  

And this is me tonight:

How am I ever going to be ok with missing out on fun stuff?!?

Primary Immunodeficiency sucks.

Lupus sucks.

Good night.  

Plugged in and Fueling Up!

 I am all hooked up and getting my IgIV infusion.  So I look up about an hour into it and think it is going slow, but I am nearly comatose from 4 antihistamines, so I let it go.  A while later I see it is still moving slow and go to tell my nurse who is too busy with another infusion.  I sit back down, hear quiet and then talking again - she is with another patient.  Can’t bother her yet.

My friend and nurse Cathy (works here) comes in to visit.  We chat a while and she comments on how slow it appears to be going, but checks the setting and all appears to be ok.  The infusion machine is not beeping, so she sits, we chat… and she checks again… to find the valve is barely on!!  I have been here two hours and barely infused - and the stupid machine never once beeped!   Grrrr!! I will be 2 hours later than I always am - even though we sped it up and went much too fast!  I feel an infusion migraine coming on…

Life in the slow lane today.  It was supposed to be a great day - but you know?  God probably saved me from something else, so I think it’ll be ok.

This is part of my sewing buddy group at the Methodist Church.  Right now we are making 80 book bags for our summer reading program at our little town’s library.  Lotsa kiddos will get them. We have a great time designing, sewing, visiting and gifting.

   

This is the last one we Veteran’s Quilt awarded.  He was so surprised by our gift!  Watching his face when he realized what it was… it was absolutely priceless!  It feels so good to make/give to others.  

   

We got a beautiful thank you note the week after we awarded it.  These things are what make my world twirl.  I love making people smile.  

       

Off to finish infusing.  It’ll be a late night.  *sigh*

But, as always, thanks to the plasma donors!  🥰

Catching Up

We have had 7 baby calves and 4 more to go.  I love watching them play.  Those babies jump out of the womb and start kicking within an hour!  It is crazy to watch!  

Something many don’t know is that other cattle babysit a pile of babies while the other moms eat.  Usually one cow, or donkey, or even a bull, is put babysitting the babies for a bit, then they are relieved by another cow.  We see this all the time.  I love looking in pastures and seeing piles of babies with a babysitter.  Keep an eye out on pastures - you will see it too.  My father-in-law says they have done that since the beginning of time.  

This is kinda what our pasture looks like between babysitting duty!  Most of the time babies are nursing.

This is our total count as of today.  And yes, we name our cattle.

I finally got in to a neurologist, who took all my symptoms seriously.  She took an immediate eeg, will get my records from the various places and I go back in a week.  Finally, I felt like someone cared!  Updates later.  I don’t know anything other than a Dr didn’t blow me off.  ❤️

I just got a call from my hubby.  He lost a tire in the bike today while riding.  He thinks he hit something at a truck stop that punctured it.  Anyway, the guys have all been picking at him to get a new tire.  Steve is known to get every bit of goodie out of a set of tires.  This time, it caught him, but thank God he is ok.  

And with 3 couples with him, he will never hear the end of it - but it won’t be coming from me!  😂

Later gator.  Damn I miss Louisiana.  🐊 

 

Another Calf!

I was gazing out the kitchen window and Elsie, right before my very eyes, dropped a calf!  I didn’t see her clear it’s face, so I took off running outside.  While I was running, I was yelling for Steve… which is seldom a good thing considering everything we have been through with me.  However, once he saw where I was looking, he reassured me that it was Elsie - she is a great momma.  Sure enough, little Jim is fine.  

Steve always calls all the cattle into the round pen to feed every evening - it makes them comfortable to be there and they load easy when he needs to take them into the vet or to the stockyard.  However, the new mommas don’t come to the pen, they are protecting their babies.  We walk a bucket of feed to the new momma and admire her baby, check them both out and see if we have a boy or girl.  This is the events BOY in a row!!    We are going boy crazy!  Lol… 

As you can see, Mrs Elsie was ready for little Jim - she always has so much milk!  In a few weeks, she will gladly be sharing with any calf!  😂

Little Jim is about an hour old here…

Do you see a rabbit in the hay?  I just glanced that way and did a double take!

Oklahoma has the most beautiful sunsets!  Just sharing this one with you.  It literally made me gasp.  I am so thankful to be alive.  Looking at the baby calf looking for his momma’s teet, then seeing this… I have to wonder how you can’t believe in a God.  How does that cow give birth to a calf, and how does that calf know where his supper is?  And who can mix those amazing colors and call it sunset?  

There must be a majestic God!

This man makes my world twirl.  He cares deeply for me and shows me over and over every day.  It pains me that I am always sick, always struggling and always so darned tired.  If I didn’t have him and our mighty God, I would simply toss in the towel.  But every day, both keep nudging me on.  There has to be a reason for me to still to be here, so I keep looking for God to show me His need for me to be in His world.  It can’t be Steve - it is much to comfortable to be with him,  He makes my life worth living - but I want to do the same for him; be well, be fun and be who I used to be.  I feel so lost in my space.

And this is Jake in HIS truck with HIS dad.  😂

The only way he comes in every night is after his ride!

He is pretty serious about it.  Can you tell?

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Today was the sinus Dr.  He needs another CAT scan, a culture and wants to wash my sinuses with antibiotics and steroids.  He added an antibiotic sinus rinse (like I need more sinus rinses every day), and 2 more sinus meds.  🤢

The headache and fatigue never quits - but I got my 10,000 steps in.  5-10,000 every day whether I feel like it or not.  I try and mostly succeed putting one foot in front of the other.  😊

Also, got an appointment with a neurologist for the shaking next Thursday… unbelievably quick.  🎉 

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Sadie Had A Boy!

Yesterday’s bike ride is still kicking my butt today.  

I held an iPhone class and our daughter-in-law and son helped by hosting an Android class.  They did terrific, but I was floundering.  I am sure the ladies learned something, but I was not on top of my game - but we got through it.  

Sadly, I still wouldn’t have given up that ride.  It is hard to give up things you love.  I want to be a part of OHCE, the bike and outside world plus do regular chores and shopping, but I am seeing that my body just can’t keep up with my ‘want tos’.  I am struggling enough that I am beginning to finally see it, trying accept it and know that a ‘normal’ life is impossible.  

Crafts; I love doing them.  Today, I tried to stay after my cell phone class to help make centerpieces for our Monday night OHCE banquet, but I cratered.  I was so overwhelmed with the mass of flowers and craft paraphernalia, that I couldn’t make sense of it.

I didn’t even feel like driving my 25 minutes home, but I packed up, drove home, left everything in the truck, walked in the door and crumpled into my recliner.  I was too tired to even sleep.  I just sat.  No texting, just coloring, no real tv, just mindless noise.  I sat and thought of all the things I should have done/said.  And then once again I realized I am trying to live in a life I no longer belong in.  How do I give it up?  🤷🏻‍♀️

After resting several hours and letting the sun go down  (lupus), I went to meet our new bull calf, Jason, born to Sadie.  He is extremely tall!!  He is not as dark as most of them, and a little grayer than the others, but they always turn black soon anyway.  Yes, we have special requests for names.  Steve’s friend Jason wanted this one named after him - so Jason he is!  

Little Jason wandered in the bull pasture while his mommy was eating, so Steve had to carry him back to the mommy pasture.  He thought that was a scary place!  Those big boys have to bully little guys around to show them who’s boss!  He was glad to see mom again and she sure fussed at us all!  Little Jason got his first scolding!  I think she got his attention!  😂  

Meet little Jason and his mom Sadie:

That was the excitement in our day!  Farm life.  ❤️

I got a call from a neurologist today and am scheduled in for next Thursday to evaluate my shaking and drunk walking.  We will see how that goes.  Hopefully better than last time.  Praying they find an easy fix and he doesn’t blow me off like the previous jerk.  

Tomorrow I go in to my sinus Dr. 3 month recheck.  He told me before my surgery I would hate him after my surgery and be his best friend 6 weeks after my surgery.  3 months later, he still isn’t my best friend, I have a sinus infection and a blockage still.  

I will tell him he isn’t the first Dr who can’t consider me a success story.  Many have come before him…  😂

 

I Withdraw...

When I am not well, I withdraw.  I guess I never realized it, but my friend, Brenda, kept asking if I was ok.  I really wasn't physically ok, but I am so used to 'dog paddling' that I keep putting one foot in front of the other, doing whatever I had planned to do.  If I stayed home when I don't feel well, then I would never walk out my door.  If I rested in bed when I don't feel well, I would never get out of bed.  Honestly, I never feel well, so my way around that is keep on keepin' on.  I did that even when I was young.  Edith would find out I wasn't feeling well, and she would suggest just staying home.  I would respond with "I am not contagious and if I stayed home I would just keep thinking about how crappy I feel.  I would rather get out and enjoy my day."  I still feel that way.  

However, I try to not be withdrawn - but it is difficult.  When you struggle physically, it is so overwhelming; trying to figure out how to get to feeling better quickly, what caused me to tank all the sudden, how to get on top of it and let's just enjoy the moment/day/occasion. 

This is a new friend and we are still getting to know each other.  I guess that was what she was seeing... me withdrawing.  We had been riding bikes the day after my infusion - I should have known better, but I want to do what I want to do.  My infusion yesterday caused me to have major nausea, but my headache was only mild.  While we were out this morning taking our quilts to get quilted, Brenda mentioned that it was a beautiful day - let's ask the guys to go on a bike ride.  Still only having a mild headache, I agreed and we did.  What a wonderful ride!

About halfway through, after sitting in the sun for a bit chatting (it was not hot), my head started throbbing.  By the time I got home, I was miserable.  I came straight in and leaned back on my recliner and fell into a deep, exhausted sleep.      

I cannot begin to tell you how frustrating it is to want to LIVE life and enjoy every second without PAYING for my decisions to have fun.  Every.  Single.  Time.  It is so maddening.  It pisses me off.  But I continue to try and try again.  And it never fails, I suffer.  

I was given my death sentence in 2016, but I am still alive - and I intend to use every freaking minute I have enjoying it.  I will not give up, give in and toss in the towel, but please tell me how to accept that I will pay for every one of those decisions.     

This is me looking in a mirror.  I only see my moma looking back at me.  She was also sick.  I know how she felt.  She just wanted to sit, but she didn't have money to go anywhere, so that is what she did - sat.  She listened to my stories of kids and camping, my sister's stories of her moves and her kiddos, she listened to my brother's stories of Germany and my other sisters trials and tribulations.  And she did a lot of praying for us all.  I see what happened, she was too poor to go out and enjoy life, so she sat and thought about how sick she was.  She lost the will to fight any more.    

Come to think of it, I see me looking back and defying the odds.  I see me fighting like a banshee and continuing to put one foot in front of the other.  I see me crashing when I poop out and then getting up to do more.  I will go in the hole fighting to have one more moment.  I have to remember not to withdraw though.  

Primary immunodeficiency sucks.  Lupus sucks.  ICL sucks.  All together - I will thrive and survive.                 

Then Came Two

Liz was 15 months old when mom got pregnant again.  She needed lots of help with this pregnancy and Liz, so I stayed home much more than before.  Dad was pretty much out of the picture most of the time.  We found out later he had a girlfriend, but the deed was done.  I remember having to roll moma out of the bed because she was so huge.  

Moma was terribly sick the entire pregnancy.  She was still convinced something was terribly wrong.  Grands (dad’s parents btw) were upset with her because dad and her were on the outs, she was pregnant (again) and couldn't care for the two she had and dad had lied to them about everything going on.  She was on their 'it' list.  No help.

She had no one except Liz (a baby) and me.  Rolling her was a huge chore for an 8 year old and a 2 year old.  Mom cried, we cried, she tried rolling, we tried rolling her… it was hard, but we would finally get her up.  We all made it.  With us.  No help.

Mom went in to (full term) labor and she had to call grands to keep us girls.  Granddad made sure our father was at the hospital because, well, because they weren’t divorced and it was his baby coming, so he owed moma that, I suppose.  

The story is that dad was sitting in the waiting room and the nurse came out and said, "Congratulations!  You have a BOY!"  Dad was super excited to 'finally' have a boy.  A few minutes later, a nurse comes out and says, "Congratulations!  You have a GIRL!"  

Dad was like, "NO!  You said I have a BOY!  You SAID a boy!!"  Nurse replies, "Yes, sir, you have a boy AND a girl!"  Dad faints.

And now we had twins.  Perfectly healthy, beautiful TWINS!  No, not identical, he is a BOY and she is a GIRL, not identical by any stretch of the imagination.  Lol.. people really ASK that!

Now we know why mom thought there was seriously something wring with her pregnancy!  Dad?  Yeah, he was there about 6 months if you could actually say he was there... he was in and more out.  And definitely no help.  So mom and I had 3 kiddos.  Liz, Danny and Sherry (now spelled Shari).  Mom was so overwhelmed and depressed.  Dad really did a number on her; he dogged her all the time, she had gone through all that in Colorado, now he was not paying bills here and the only thing keeping us safe was the house we lived in.  He couldn't screw it up because grands owned it.  We didn't have to move in the middle of the night, but we still had to come up with money to pay the bills.  With 3 kids.  Oh!  Four, I was still a kid, too.

I will be honest.  None of my years were easy, but these were the toughest times ever.  Before it was just me, now it was me, my brother and sisters and my mom.  This was scary.  Mom started selling Avon and Tupperware to make ends meet.  It took at lot of time away from home, but I was able to care for the kids.  We had pretty much done it together from the start.  She had taught me to change diapers, to feed and care for my brother and sisters.  I would do that while she worked.  Our little town was small so she would check on us often.

At some point, I don't really know when, she started going out with a man named John.  He started helping with the bills and she depended on him for helping with house things, repairs, etc.  The fact was, it came with a cost.  Her girls.  Of course, he lied to her and made sure she was out when he came over.  He molested me.  I can't speak for anyone else, but he said he 'loved me like a father' and did his thing.  I had always been taught to respect adults and I knew no better.  I was about 11 when he started molesting me.  Much too young and naïve and way too trusting.  It happens just like they say on TV.  He threatened to kill my mom, my siblings and my grandparents if I let them in on "our little secret."

The fact was, he was married.  He was married to my best friend's mom.  I can't tell the rest of that story either, but we became one big family.  His wife knew, but I she had lost her first husband in a shooting.  I think she needed someone to pay the bills.  So mom, Norma, John, Sharon, Jeanie and our family all became like one big family.  It was strange.  And I 'pretended' to be everyone but the person I was.  A counselor told me that I had started that early: whoever I was living with was who I tried to change to.  If they liked Fruit Loops, I liked Fruit Loops, if they loved Pizza, I loved Pizza.  So when I started being molested, I ‘became someone else’ - like a movie star… but it was my way of 'checking out' from the life I was in, which made sense, but it hurt a lot of people.  I had learned lying from my dad.  I had gotten very good at it and very good at pretending to NOT be who I truly was.  Thankfully, much later I learned lying isn't worth the grief it causes.  I backslid a few times years ago, but my heart ached.  I stopped.  

That went on for years; the relationships, the lying, the sexual abuse, the physical abuse from angry parents, and the neglect because mom just could not handle the deck she had been dealt.

  Jeanie and I were best friends, both confused, but lucky to have each other to get through that mess.  And only *we* knew the mess.  Truly, no one would ever, or could ever, understand - to this very day.  It was complicated.  Very, very complicated and way too complicated to even try to weed out and explain to counselors later.  Not at all healthy, but it was how we survived.  And we cared for the kids.  Jeanie got to go back to her home at 706 (house number), but the kids and I stayed at 813, while mom was flittering somewhere between both places.  Ultimately the kids came to think of me as more the mom, the protector and 'Sissy'.  I think I probably took over by protecting them from mom and her anger, dad and his lack of support, John and whatever he could do, and anyone else that could hurt them. 

Looking back, I think mom tried to take over, but I pushed back and she didn't fight it - she questioned her sanity because dad and grands had convinced her she was crazy.  The more she pulled away, the more I took over.  Eventually, the kids became 'mine', sadly, because Moma loved us all.  She was truly so dysfunctional thanks to all the ones that abused her.  But she cared.  She honestly did. She had no idea John was doing what he was.  She thought she could trust him and let her heart do so.  Dad had never molested us, so I am sure she never even considered that it was a possibility from another person.  She was going to Oklahoma State Tech to get her accounting degree and he was abusing us.  Conveniently scheduled around her schedule.  

It was years later, and years after John had died of a massive heart attack, that she realized what had been going on and called me crying and trying to apologize.  I wasn't open to it yet.  I hung up on her.  

Back to the kids and I.  I had no idea how to raise kids.  I was a kid that was raised in a very dysfunctional environment, but I knew how grands had raised me.  With respect, security and love.  That is what I tried to give the kids.  Still to this day,  I love them like my own, but I know they were moma's.  I know she loved us all.  She was soooo confused and felt unworthy of us.  How do people take another's self worth away?   Ask my dad, my Uncle Billy, my grandparents and even John.   Sadly, we can't.  They are all dead.

But it doesn't end here... more another day.

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I have been walking like a drunk for 4 days now.  I have no idea what causes it, but it happens every few months.  Today, I was walking, got off balance and fell.  In front of at least 15 people!  All looking at me because I was showing them something.  Lord have mercy!  I am fine, but I would sure like to know why I walk drunk.  No I don't drink anything but water and tea!  And yes, I was embarrassed.  

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