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Our niece, Morgan-Brooks Institute graduate, former Miss Bel-Air and all around great person also has celiac’s disease and fibromyalgia. She found an article entitled “The spoon theory” to explain what it’s like to live with chronic disease.
Perfect and effective. I have: RA, OA, RSD, degenerative disc disease, scoliosis, severe osteoporosis, ankylosing spondylitis, dupuytren’s contracture, fibromyalgia and have been literally hit by 2 trucks that then gave me concussions, frozen shoulder and more. However, I LOOK in excellent health. Hell, my husband lives w/ me and gives me my humira and has taken me for countless epidurals and he probably doesn’t realize what my “life” is like.
Instead of my usual weekly musing-I’d love for you all to read “The Spoon Theory” and what life is like for those of us with unseen “challenges“. I’d put down the link which I found (believe it or not) on MTV. But since I can’t put links on here-google Selena Gomez and her finding of the blog, The Spoon Theory.
It rained over the past week, several times.
Funny because monsoon season is officially over and we shouldn’t have any. Living on the face of the sun shouldn’t have so many “caveats“.
Here we are almost in mid-October and Lucky and I are doing our best to enjoy the fall weather. My favorite time of year in Orange County, CA was mid-Spring through mid-Autumn. It was warm, easy to walk any time of the day and we only had maybe one uncomfortably hot week in August to endure.
In Arizona it’s almost the “flip” situation. Lucky and I are avid walkers. As soon as these rather compromised joints can move I get dressed, hook her up and we get outside and enjoy the solitude of the Sonoran desert that surrounds us. This is our life from (usually) mid-September through mid-May.
Now while all the local weather people around here were saying that this year was our “coolest” since 1999, I must say-it’s been the hottest for dogs and people. Smart cat parents do NOT let their felines outdoors any time of the year!
Starting in January this year, we had about 2 weeks of 32 degree mornings. But the days pretty much evened out at about 80 and then dropped down once sunset hit the area. Our nights in December and January can be very “brisk“. But the days are gorgeous!
Lucky loves to wear one of her sweatshirts or her fleece jacket during those few weeks. She’ll even wear it inside, even though our home never seems to drop below 78.
Back to the subject. This year Lucky and I adjusting our walking schedule to meet up with the comfort zone of daily temperatures day by day. But we walked no matter what. Until monsoon season hit. Oh my. By mid-May the temps were firmly in the 100-115 range.
This means it’s too hot for Lucky’s feet, even at night. Let’s face it-just because the sun goes down, the heat in the cement or asphalt doesn’t drop AT ALL. Plus, evenings are still over 100 degrees. Our overnight “lows“? At least 100.
So poor Lucky doesn’t get her daily exercise all summer. Yes, even when a monsoon hits (or a micro burst), the temps don’t lessen, just all high humidity to the misery and you’ve got our lives.
I wind up using the treadmill in my office-but even that is rather uncomfortable in those high heat/humidity days.
Then comes the end of the ‘season‘. This year we celebrated by having a 3 day event marked with flash flood warnings, lighting and thunder. Obviously the monsoons didn’t get the memo that they were supposed to be gone until next June!
Yet, our temps have dropped into the 80’s during the mornings making it perfect for my tiny walkmate and I to get outside and once again enjoy the solitude of the desert while getting our needed exercising done.
Yesterday we say a bunny family. Today, some chipmunks, a roadrunner (beep, beep) and a couple of hawks. Lots of burro leftovers too.
I’ll take it. I think, I wonder, I sometimes take a few photos but whatever happens, I’m just so happy to be able to get outdoors!
Our older grandsons come up with some very interesting questions. Most of the time we have some sort of answer. Luckily the one up for discussion this week was one of them.
Aidan was asking me if I suddenly became rich-what would I do?
Without hesitating, I told him I would hire a housekeeper so that grandpa could have that “taken off his plate” of weekly activities.
Dylan said, “Grandma, I thought you wanted that dirt plot in the yard finished or your floors re-done. Even your bathroom that you hate. What about those?”
I said (honestly) that he was right, but that if I were rich-those would definitely get done, but I’d like to make something a bit easier for grandpa since he had to work so hard and then come home and do nothing but chores and help me with the shopping.
Both boys wanted to know if there was anything else I’d do? It didn’t take long to say, “well, if money really were no longer an object I had to consider, I’d love to help all those sad dogs and cats that have been abandoned and abused and help them to have a place to feel safe and loved.”
They were satisfied with my answers. So was I. I also sighed about the fact that there would be no sudden “wealth” to accomplish any of those ideas.
On the other end of the question scale is Jackson, a mere 25 months to his cousins 7-1/2 and 8-1/2 years and just really getting started on this talking thing, has only eyes for grandpa (once I’ve given him a stream of grandma kisses and one “explosion” fist bump) asked, “poppa, eat it?”
For those who don’t know-Jackson has a bit of grandma in him, he’s just not much for protein coming from an animal. We were having breakfast with Adam and Jackson when our son ordered the little guy some chocolate chip pancakes. It came with bacon and sausage. He thinks the pancakes are actually a slice of cake, so those get tasted first.
His mood decides on how much he’ll eat of those. Sometimes only a bite, sometimes half the plate. But the bacon and sausage? More often than not he’ll say, “daddy, eat it“. And then he asks poppa to have some.
Not wanting to hurt his feelings, both men eat the meat. Even if it’s already been in Jackson’s mouth.
He thankfully has NOT asked me to share his bounty. You’ve got to admit though-getting two grown men to eat sort-of pre-digested pork means there’s a whole lot of love going on.
And that’s it for this week-interesting questions and responses.
I think those of us who must endure needles on a regular basis should form some kind of a social club.
Let’s face it, even if your family participates in seeing you get the “routine jab” that fills your personal timeline, they just don’t get what it’s like to be a human pincushion.
For me the worst one is my bi-monthly acid-filled vial of Humira. You’d think after 6 years on the stuff I’d just let Steve shoot it into whatever part of my body we‘re “on” and move on. But that shot is literally worse that having one of my all-too-often endured epidurals.
The epidurals do NOT have an acid base.
I have a pretty high threshold for pain but that shot I find myself wishing there was a WHOLE lot more I could do that rubberband an icepack to my body part for 20 minutes. Any idea how much help that is in making acid going into your arm less painful? It isn’t.
Steve is very good at doing this shot, but no way can anyone make acid feel “better“.
I practice slow breathing, I do my best to relax, I pretend I’m doing something outside my body. It does not help.
No one but another person on Humira can identify with what it is I’m going through. And then there’s the blood work every 6 weeks-if all of them come back “stable“, I don’t have to go through the syphoning in between.
This month wasn’t a good month for that-first there was the extreme vitamin D deficiency. Then there was the liver enzymes that were way up. Then we had flu shots. I still have to get my osteoporosis infusion and a Tdap.
My back and neck are truly “killing” me, but with all the other needles-I’m just trying to hold off on the fourth epidural of the year. I won’t tell you about the toradol shots that were done to help that stretching theme. Toradol hurts too.
There are plenty of us who endure all this and definitely some of you out there that endure way more, but I’m serious-let’s all get together for some coffee and commiseration.
Just name the time, send me your Skype invitation, tell me some handy hints to lesson the pain-let’s form a club to help each other out!
Before we became Arizonans-Steve and I were born and bred Californians and his occupation for almost 4 years was as a corporate trainer. For 3 years, I taught learning disabled teens how to get and keep a job. I’m mentioning this because of a few experiences I’ve run into here in our wonderful but remote community that a few more minutes of training would greatly enhance customers experiences in local businesses and the employees who may (or may not) do better at those said jobs.
Just as a couple of examples:
The other night, last moment, we went with our friends to a local well-known coffee house. It was about 7:30 at night. Steve was the only one of the 4 of us who actually had coffee. Our friends ordered a fancy iced non-coffee “shake” type drink, Steve had an iced Caramel coffee and I decided to actually have tea.
Not just any tea-but I wanted a brewed Chai, no milk and (here comes the point to this blog) I wanted the young man taking my order to check and make sure I could have a de-caf version.
This actually happened:
Me: Do you have a de-caf version of the chai?
Him: It doesn’t have coffee, it’s tea.
Me: Yes, I understand that Chai is tea, but do you have it in de-caf?
Him: It doesn’t have coffee in it.
Me: Okay, may I have the non-caffeine version of this tea?
Him: Uh, (looks at the manager, who was actually witnessing this exchange) what do I do? The Chai doesn’t have coffee already?
Manager: Let me check, I’m not sure if we have the Chai in de-caf. (several minutes later) Yes, we do! Good to know!!! Would you like it in de-caf?
Me: Yes, very much. Thank you.
Obviously, neither the store manager or the employee understood the difference between de-caf and coffee. The real question is WHY??????
Steve and I decided to go cruise a market that is going out of business and is currently selling stuff at 40-60% off to see if we could save some money. We were surprised to see that most of the store was already pretty empty. We weren’t surprised to see that all of the employees had that “beaten down” look.
I went back to the store the next day for a few items and talked to one of the managers and one of the cashiers-they were NEVER trained by the new owners and their way of running a store was far different than how the original place ran things!
Plus, they were all promised at least jobs for 2 years-instead they got 2 MONTHS and 2 months of closing up shop!
What kind of business training/planning was this?
In today’s world, customer service is a huge part of staying in business-so here’s a tip from both a consumer and a former trainer: BUSINESSES, train your employees to reflect your wish to be successful in the marketplace that fits your store and make sure you at least care enough to know your product well enough so at least MOST of the questions coming from your consumers are answered intelligently.
If you’ve read this blog for any amount of time you know just how much our fur babies mean to Steve and me. My very, very first blog was all about giving Sunshine a shower on Independence Day.
With that said, I have to tell you that this is a week filled with both happy memories and pain. 18 years ago were lucky enough to adopt Sunshine. And Friday, the day I post this entry, we will mourn her loss for the 4th time.
A friend from Jr/Sr high school (Shawn!) mentioned on FaceBook that she loved the way I remembered and loved all my pets. She’s right, below is my answer to her kind words:
I see Tippy’s eyes in my sister’s Beauty. Our tuxedo cat Samantha in our son and daughter’s own tuxedo cat Zoey, Felix (the cat) in their handsome Maine Coone Toby. Our first Lucky, a Shepherd in Lucky the chi’s need to protect and both their love of hugs and kisses. Snowy was a dear we will always treasure and the reason we adore Pepper so. Both are fiercely loyal to us and their canine counterparts.
Sunshine couldn’t have been more perfectly named. She was the light and love of all of ours for the 14 years we were blessed to have her with us. I bet she would’ve loved Lucky and the way Pepper trained her to behave the way she taught him.
Our dear Goldie/lab/border collie mix was a big love bug. She was easily the sweetest and most patient pup around. We adopted her from a rescue that found her wandering around the streets of Burbank. Perfectly behaved and the best family and day care dog EVER.
On her last day, she was still all Sunshine. Still with her smile, still just happy to be with us until she wasn’t.
Nothing says pain like losing someone you love-whether they walk on two or four feet.
We love and miss you Sunshine!