I Just Love Him

Pulmonary Rehab is great. The therapists are super helpful, positive and encouraging. I'm building up stamina, learning tons or great (scary) stuff. 

 Yesterday was the first day of the Pulmonary Fibrosis Clinical Trial that I'm in. Feels like a crazy dream (nightmare). Clinical trial first hour is about paperwork, risks, rewards, protocols and commitment. Then there is drawing blood (lots of blood), a super EKG with the little electrodes placed from ankles to neck! 

So I'm laying there exposed and they do two EKGs. First one, one of the nurses in the room says "thats not a good one, take another." The machine does its short eeerrrrr noise and nurse says again, "not good, hold on." They take several of the electrode patches off and replace them with new ones. Then eeeerrrrr and again, she says, "do another!"

Calmly as I can I ask if they are saying not good because of what the EKG is reading, thinking that maybe I'll die from a heart attack before the IPF gets me. They reassure me that its not me, its the machine. She says the machine is just really old and its hard to get a good reading. They try again, apologizing for leaving me exposed for so long. (I typically don't bother with a bra but I'm kind of happy I wore one to the party that day. Not because I was embarrassed being exposed but because the room was kind of cold...if you know what I mean!)

So they try again and this time it works. Report comes out super good. Oh yeah, forgot to tell you another nurse came in to draw my blood while I was getting the last EKG because they tried 2 times before and couldn't get the blood to flow. 

I felt bad for the first lab tech to try. She came in with what seemed like a hundred tubes and started to explain that it wasn't really as much blood to be taken as it looked to be with all the tubes. I tried to make a joke about passing out with the amount of blood she was going to drain from me. Apparently she was not in a funny mood because she seriously looked me in the eye and asked, "Do you have a problem with needles or blood draws?"

"No, I don't," I answered, "UNLESS the person drawing my blood misses catching the vein twice." I explained to her that if a lab person or nurse misses twice I always ask for another person to do it. My experience has been that the person becomes frustrated and we both lose, hence, someone fresh to try.

She looked just a bit anxious and missed twice! Well, of course she did. Note: she did not hurt me. She was gentle and I was probably a little dehydrated. So I started drinking plenty of water during the other tests. 

Eventually all the tests were done and blood drawn, cups peed in and clothing back in place. 

But wait, it got better. The trial coordinator (my very own personal coordinator...how lucky am I?), anyway, the trial coordinator comes in with a pretty blue and white box. Breaking it open, she pulls out a brand new IPhone, a 16 page instruction book and a spirometer. Once a week I get to breathe into this little machine and the phone reports it to the trial powers-that-be. Cool huh!

Not so cool. The machine has a mouthpiece and you inhale, exhale, inhale, exhale, inhale, exhale  and then the machine demands INHALE....EXHALE QUICKLY! 

Easy, right? No, not easy. 

You have to exhale as quick and forceful as you can and the machine demands, "Keep Going" over and over and over and over and over, until you feel like you (me) are going to pass out, or the veins throbbing in your temples are going to explode. You (me) decide not to have a stroke or fall off the chair, stop exhaling. The machine then gives you a "Fail" and encourages you to try again. 

I got eight attempts yesterday and only got the "Success!" flag twice. The machine then tells you to stop and try again tomorrow morning. I guess almost dying 8 times a day is the maximum they will allow in the trial. Not sure if that is mandated by the research agency or the feds but doesn't really matter, I'm just thankful it is only 8.

Today, I try again. This time I have The Guy as my helper. (Man, I love him!) So we try to figure out the Iphone, get a connections, got the blue light and we're off to the races. 

I tried. FAIL. I tried again. FAIL. The Guy is harmonizing with the machine. "Keep going. Keep going. Keep going! Keep going!" FAiL! 

I swear to you, my friends that my Guy got tears in his eyes. He actually apologized for not being able to help me or give me hints. He tried. He tried so hard. Blow harder, blow quicker, tighten your mouth around the tube. He tried so hard to help me succeed at blowing in the bossy machine's tube to get a SUCCESS. He is also aware of my authority issues and that having a machine making demands of me is pissing me off!

I finally got it! I blew so fricking hard and exhaled so much that a headache and chest pain rushed into the vacancies created. I'm having a difficult time trying to figure out why a program for someone with pulmonary problems and the stress of knowing there is no cure are expected to succeed but then again, "Mine is not to question why, mine is but to do or"...oh fuck!!

So, I just want to share with you how awesome my honey is. I met a couple of friends for coffee and was gone for about 4 hours. (We always say we're meeting for coffee but we're really meeting for meaningful conversation, hence the 4 hours). While I was chatting away with friends, the Guy cleaned the house from top to bottom. Washed the sheets, made the bed, put a roast in the crock pot greeted me at the door with a hug and a kiss and the pups! 

I thought I might share an AI photo of him. (can't help my kids and the Guy! They are all nerds to their very cores). First photo is how I see my guy!

He's a pretty handsome guy! Take away the crown and the beard, mustache is his and this looks exactly like him.

This next photo is how he sees himself...yes, he thinks he could do manly-shampoo ads or "tastes like real butter" commercials!

This beard might be his. The color of his hair matches but it hasn't been this long since the '70's!

Bottom line: I just love him! He's my rock!

Happy Winter Soltice! Merry Christmas! Blessed Yule!
Happy Holidays!

Pagan Ritual..ready, set,...

Time for the most fun pagan ritual. Time to get out my purple satin cape to catch the mistletoe as I harvest it. Time to Sage and sweep the house out and best of all, time to set up the holiday tree. 

We're still purging...boy, have we got a lot of shit! A lot less than a year ago. We've shredded enough paper to keep snowglobe companies in business for decades!

On the IPF side of things. The medication my pumonologist prescribed ended up being a little bit over $14000 a month and our insurance will cover enough that our cost will only be a little over $2900 a month. After we laughed until our sides ached. We declined the medication. Then the pharmaceutical company said there were several programs/ grants that helped pay the copays. Alas, we didn't qualify. Apparently we make about $15 too much per year! LOL.

We discovered that we can get a month's precription from Australia for about $895/mo and Canada between $1100/mo to 1800/mo. Crazy! Are there really people who can afford that kind of long term costs for medication? 

I started pulmonary rehab. Nice people and really nice getting back into a regular exercise routine. Other than having some chest pain and O2 dropping down into the high 80's a couple of times, I'm doing pretty good.

I was accepted into a Stage 2 clinical trial for a new medication. (happy dance!!!) The research company offered to pay my travel expenses for visiting the clinic once a month for the duration of the trial. I agreed and then discovered that the research labs are right across the river from us! 

Can't tell you how much it breaks my heart to rob the pharmaceutical company of their big bucks but I'm sure they'll get it out of someone else!

Over the years I have seen a therapist off and on, mostly for my PTSD flame ups and some of life's bigger challenges. I have the best therapist in the world (totally biased). She calls me a Kick-Ass Warrior Woman, so I occasionally need a Kick-Ass Warrior Woman tune-up!

I was telling her the biggest fear I have about dying is that I'll miss my kids. We talked about how I probably just am afraid of "missing out" on their life's events. I was primed to believe she was right.

My baby girl's birthday is in November. She turned 50 this year! (you remember, baby girl with PhD, working for the Department of Defense!)She and her husband came out to California for a nice visit, not long enough ever but still nice.

Participation is great but there is a lot to be said about observation. I did a lot of both while Nicole and Brian were here. I've spent some time with my sons and their wives, again participating and observing. When Nicole and Brian returned to Virginia, boys retured to their homes, I had a huge epiphany. I'd call it "life Changing" but I think if was more like "Dying Changing"!

I realized that what made me afraid to die was not so much "missing" my kids, it was more that I was afraid that they would need me and I wouldn't be here to help them. Now I know that kids always need their parents in some ways. My mom and dad have been gone since 2018 and I still want to call them and share things with them. I miss them dearly. My realization was that my children and their spouses, their families are solid, they're successful, they're settled, they're independent. They've made it! 

Bottom line. They don't need me to jump in and rescue them! (Once a mom, always a mom!) Honestly, they're all so successful, they would probably be the ones rescuing me! 

It's okay if I'm not around one day (except for my doggies who might sit by the door wondering why I'm gone so long). My kids have got this! They're rock stars. 

I'm so proud of them and I know whatever comes they will rise to the challenge! Makes a momma proud. 

I'm not ready to jump ship by any means but if the ship dumps me, it'll be okay!

Now. gotta go harvest some mistletoe and sage. 2023, here I come!

Plunking Around

 Sunday! Football. More purging! It's crazy how many times I pull things out  of a box when the first thought is "what was I thinking!"

While going though old files do any of you find yellowed paper with random phone #'? No name, or a first name, no last, and you have no idea who, what or where! Found a post-it note that said "Tuesday, 10:00"! Makes me think  someone called and said they were on their way to our house, so I gathered up a bunch of odd and ends, magazines, nail files, polish remover, cool I'll-check-that-out-later catalogs and a partner-less sock, dumped it all in a box and the box ended up in the garage.

At least, by purging now, there is the promise that we will not be hauling tons of useless ephemera with us to Ohio!

Visited Denver last week to celebrate our oldest granddaughter's 25th birthday with her. Quarter of a Century! How did little Alli get to 25 when I'm only 42?

We had plans on visiting my 90 year-old aunt and lots of cousins but the altitude threatened to strangle me. We had to head home after just one day at that altitude! Another Pulmonary Fibrosis benefit! Also found out that wrapping a scarf around my mouth and nose when outside in weather below 40 degrees is advised unless I want to go for marathon coughing!

No Cold Air
No High Altitudes
Learning a lot with this diagnosis. Also getting some excellent naturopathic advice from good friends. 

Pulmonologist looked at my white white hair (ignoring the purple highlights) and asked when I first starting going gray. I answered that I got my first gray hair in high school, true. He stated that families predisposed to premature gray hair are also predisposed to Pulmonary Fibrosis. 

Sorry, Dude, (Dr. Dude) but no history of IPF in the family and longevity is the best part of our DNA. Family members live to be late 90's. 100 and even 102. ( I thought my great-grandmother lived to be 104 but I was corrected by my mother. Great grandma only lived to be 102!

Before I let you go, I want to share a little entry from my mother's journal. (No wonder, packing is taking so long, I keep pulling out the journal and catching up on Mom's life)

Quote from journal:

"Mama's mother, grandma Daisy is 102. While we were in the kitchen I asked her if she's always been healthy. She replied that she has rarely been ill. No time living on the ranch! I asked her, Grandma, have you ever been bedridden? Yes, mi hija, hundreds and hundreds of times, even once in a buggy!"

Mama Said There'd Be Days Like This

Hi all, I've missed you all, though I do check up on you now and then. 

Life has been crazy here in Shasta County. Los Angeles Times and New York Times have actually written articles about the craziness. 

Several years ago a rich guy came to town, built a gorgeous winery, event center and chapel all without permits. The county charged him and he had to pay penalties...which of course the entitled white rich man was above doing. He closed everything up (or the county did, not sure). He moved to Connecticut  but with a soul dedicated to revenge! We have a huge bunch of Trumpers, Election deniers, White Militia and GOP cowboys here in the county and they are taking over the county all with the financial backing of Mr. Revengeful. It's damn scary. 

That's exactly what we needed to go with Covid and forest fires and smoke and drought. If you see any green lawns in our county it's because they've been sprayed green or your very rich and don't mind paying the fines.

We've been slowly packing and purging to make our exit from California and were seriously considering North Carolina or Virginia. It looks like it's going to be Ohio! Yup, OHIO!

When I told one of my granddaughters that her hippy grandmother was moving to Ohio she laughed her head off (almost). "Ohio!" she said, "I almost forgot there was a state named Ohio!"

Ohio is not my first choice. I need mountains. Every time I see a drone view of a house on Zillow or Realtor.com and see that flat horizon my heart pounds and I can't breathe for a second or two. Flat scares me. A friend that lives in Ohio said not to worry, they have hills. He just doesn't get my attachment to Mt. Lassen and Mt. Shasta and all the surrounding mountains. 

Why am I considering Ohio, you're probably asking yourself. Not such a long story. 

I've been diagnosed with Pulmonary Fibrosis. Not a good thing. Average kicking-of-the-bucket typically happens within 1 to 3 years after diagnosis. Diagnosed two months ago by accident, my worthless doctor actually had a report from a CT done in 2020 that showed the beginnings of IPF but failed to tell me. A CT done this year to look for something completely different showed progression. My chiropractor actually diagnosed it. No cure, just progression and then cough, choke, death. Crap!

 Ohio has Cleveland Clinic, which has an outstanding pulmonary department. So flatland it is. 

I'm extremely anxious and depressed with this. I've taken all the tests and am awaiting next doctor visit (with pulmonologist not old GP). In the meantime, I'm trying all the naturopathic things I can do. NAC, Vitamins C,D, & E. Doing some breathing exercises and (don't laugh) third chakra work. 

I'm working with a therapist on a Death with Dignity plan, which probably means coming back to west coast or another state that allows it. Ohio doesn't have that option. The thought of suffocating while my family stands by just doesn't have any appeal.

I have three kids (kids all in their 50's) but they are the most intelligent, funny and glorious humans. It makes me sad how much I will miss of their lives but mostly their humor and intelligent conversations. 

Don't get me wrong. I'm not giving up. I will put every effort into delaying the progression of this disease but there is no cure (YET). 

Dr. Pulmonologist says there are medications to help slow progression but the cost is about $70,000 a year which insurance will pay approx $1000 per month. He doesn't prescribe it, unless his patients insist, because it only has about a 5% efficiency in slowing progression. Can you imagine? $70,000 a year. Big Pharma scores again!

So, breathe deep, my friends. Keep moving. Get out of town when the skies fill up with wildfire smoke. 

I'll keep you all up to date. Back to packing and hacking!!!

Inspiration

We survived another sleep-over with our 7 year old great-granddaughter, Ms. B! 

We picked her up from school yesterday, came home for a picnic that she set up. We sanded a couple of bedside tables that I'm going to paint. 

We came inside. She is quite the gymnastic kid so she moved a couple of items, a table, plants and ottoman, so she could do forward hand springs or stand on her hands whenever she felt the urge. She felt the urge often, sometimes in the middle of a sentence.

At one point, after an exceptionally spontaneous handspring, she sat on the ground holding her shin and announced loudly, "It hurts to be cool!"

If you ask Ms. B how old she is she will tell you "7 and a half so technically I'm 8!" She rounds up on her age but not when passing out cookies. She and The Guy (technically The Papa!) made chocolate chip cookies and ordered pizza (forget Keto this weekend).

She went home early this evening. The Papa and I took some Tylenol and are watching the clock. We don't want to be wussy and go to bed before 9 p.m. It would somehow make it official to us that our butts were kicked by a little girl. Two to One and she still kicked butt!

As soon as that long-hand hits the 12...14 minutes from now, I'm fluffing the pillow and calling it a day. Before I sleep though, I will be sending out a little prayer of gratitude...for not falling off my bike, for being able to get off the ground after the picnic, for being Ms. B's star student during a game of School, for Papa making pancakes with sprinkles and Boysenberry Syrup, and to Ms. B for inspiring me to get back on my bike and ride!

I'm sleeping good tonight because tomorrow WE RIDE!

Where's My Glasses!

 I hopped on my blog today to check out the blogs I'm following.

As I scrolled down the right side, a widget from long ago caught my eye. It is some long forgotten link proclaiming myself a Democrat. I hadn't read the description in a long time. These words are the widgets, not mine.

You are a Working Class Warrior, also known a blue-collar Democrat or Occupier.

You believe that the little guy is getting screwed by conservative greed-mongers and

 corporate criminals, and you’re not going to take it anymore.

With my reading glasses sitting next to my coffee on the table,  I had to squint with my "good eye"! "Good eye" meaning not the worst one,  I read, "the little guy get screwed by conservative good-manners!...WTF!!!!

My neck almost snapped as I reached for my readers.

                                                              "...conservative greed-mongers.".

I guess I'm going to find one of those reading  glass necklace holder thingies. Are they called Glass Retainers? I'll hippy it up with some peace-beads and keep my reading eyes safe from fake news!

Photo courtesy of Wish.com

Daily Self-Care Distractions!

Craziness going on in the world! I'm CNN-Twitter-ABCNews-PBS-ed Out! 

Need a bit of self-care, I typically self-medicate my chronic depression and anxiety with Ben & Jerry's Cherry Garcia but my thighs begged me in a dream last night to have mercy on them!

So, what can I do for the sake of my thighs and waistline? I know...random questions about things that will never be! (Sorry, gave up sanity for Lent!)

My sister posted this on FB yesterday:

Not sure of original author...sorry!

A commenter announced that they would love to have their life narrated by Morgan Freeman!

That would indeed be pretty cool but I'm a woman so as much as I love Freeman's voice (and boy do I love it) I think it would be more self-affirming and less condescending to have a woman's voice in the narration department. 

Who would you like to narrate your life story on the next Netflix Made-for-TV movie or do you think your life is Big-Screen-ish?

I've been around the sun 71 times. In that time I've had some highs and some lows but nothing big-screen worthy. My biography is definitely closer to TV, I mean if professional bowling has a show why not me Why not you, right?

After the first 10 minutes of national news, I flipped over to Ed Sheeran channel on Pandora, grabbed a soda, and tried to figure out who would be the voice to my ups, downs and long, long flatlines!

Helen Mirren. That's who I want! It was a tie between her and Emma Thompson. Deciding was a challenge until I figured Mirren should narrate and Thompson would play me!  

Now my sisters-in-law would probably suggest it be more appropriate that Roseann Barr narrate. I haven't won a lot of brownie points with them the last couple of years! We'll leave that part out of the movie!

So, share with us. 

Who would narrate your movie?

Who would be play you?

Maybe Lily Tomlin would make a better me in the movie? What actor  is a cross between Tomlin, Thompson and Cher (okay, just a little Barr)!

Next meaningless and random distraction: What characters in a movie or tv show would you hire to take Putin to the Train Station (wink wink, nudge nudge)?

Tapering Off

 Hi All (or maybe I should say (Hey ya'll!) 

The Guy and I are seriously considering selling our home on the west coast and vaulting all the way to the east coast...Virginia, that is! Or North Carolina, or, uh, maybe just Ohio!!!!

(you'll never believe how much time it's been since I started this post...I got a little distracted!)

Art courtesy of Scoot Smith

So, yeah, we're trying to taper off our deep love of California and our California-ness! There is a certain "west-coast vibe" that many this side of the country have, but we're up here in Northern California. This is where take-it-easy-don't-harsh-my-mellow does not exist, and actually could get you shot if you openly display anything but  rage and distrust! But this is not about that!

This is about being a couple of a certain age who need out! We have been through many huge fires in our life together and several mandatory evacuations and several more evac warnings. We've had summers when we can't swim in our pool because the smoke levels are "unhealthy"! It's weird that the news casters announce that smoke levels are high and we should remain indoors as if we liked walking the river trails inhaling small glowing embers!

Then there's the fact that in good ole California 66% of the cost of a gallon of gas is actually taxes! Yup 66%! But, again, this is not about that!

This is about PTSD and Drought and a bit of ignorance.

The evening news on March 3 announced Wind Warnings for the morning of March 4. You know the big red banner Wind Warning! 

Morning of March 4 the guy takes dogs for a walk. Upon returning he states, "There's smoke rising in the north hill." I responded, "Yeah, I think they're doing a controlled burn today." (they being Cal Fire)

"Not today," responds the guy. "have you seen the wind out there?"

Fifteen minutes later on scanner there is a request for a dozer at the site of controlled burn! Surprisingly (not) the fire has jumped! 

Can you imagine?

Half hour later we receive a mandatory evacuation alert on both our phones! The alert was not for our neighborhood but the fire is north of us and headed south! 

Goose bumps, chest pain, tight jaw and a couple of veins throbbing in our foreheads...NOT AGAIN!

It's only March! We need to get out of here before summer!!!

They've got it under control. Evacuations have been lifted for the immediate area of fire, The sheriff's department announced that the fire was under investigation...apparently Cal Fire was hesitant on taking responsibility for burning on a High Risk day with incredibly harsh winds but too many people have scanners and heard the first couple of calls for help go out. The next day they sent out a press release announcing that a controlled burn went out of control but nothing like, "We sincerely apologize to the Peeps of Shasta County for lighting a fire on a day we warned you all not to!"

We're going to miss this beautiful area. Mountains are my best friends and people have promised me there are mountains in Virginia, though they are a little stooped like my and The Guy!

Sunset from the lookout above Shasta Dam!

 

I swear this is through the windshield on out way to photograph lennies on the mountain. My camera lens is never that dirty!

I do know that east coast color is more vibrant than ours...maybe more of it but can it really be more vibrant.

Well, until next time...The Guy is telling me there are lennies on the mountain and we gotta get up there!

p.s. I know there is a war going on, and a pandemic and apparently some kind of civil war in the U.S. but I thought we could all use a distraction!