I waited to post till I had some GOOD NEWS! That was several weeks ago, and today marked the bifurcation (had to look up the proper spelling for that!) of a long, bumpy road!
MRI: I’ve NEVER hurt so badly!!! The angle they had my hips was EXCRUCIATING! Not their fault: wedge to alleviate pain from scoliosis/lying on back was too high this time (used it several times before w/no issues!) and knees trapped against top of tube. (If you’ve never had an MRI, the tube is SMALL, and your nose is literally an inch from it!!! Good thing I usually sleep thru it! Not claustrophobic, but WOW!!!) Cried, prayed and sang to myself (not aloud) the whole time. Once again, Julie Andrews/Rogers & Hammerstein “My Favorite Things” played in my head. Did I tell you I wrote her an encouraging thank you note after one MRI that her song played in my head? She sent back an autographed pic! To ME!!! Hangs on my wall by other important pix!
Oncologist: Nothing they can do to help me: MRI report: just fibrous (not fibroid, as I was led to believe and wasted time on phone w/2 diff fibroid expert clinics!) scar tissue. Radiation not an option, and could make it worse. (Don’t ask how?!?!)
He called my neurosurgeon, who agreed that further surgery was not a viable, helpful solution. Referring back to pain Dr for SCS.
Today: SCS surgery: Once again, the light at the end of the tunnel was AN ONCOMING TRAIN!!!!!!
Neurological issues dramatically escalating in past few weeks. More NPA’s; tremors; vision issues; no sleep cuz awoken by NPA’s every 45 min! Can’t sit for more than an hour w/o retiring to my recliner in PAIN!
IV was quick and EZ! Amy was AWESOME!!! That’s usually the hardest part!!
Anesthesia in arm/IV was HORRIFIC BURNING!!!! SCREAMING “STOP IT!” so they gassed me, too. Grateful for that mercy! Never been that bad before! Even “volcanic eruption in arm” of cardiac nuclear chemicals not that bad!
Report from pain Dr: “Surgery failed. Can’t get leads placed properly (stenosis and scoliosis and scar tissue!). Go back to spine surgeon to trim area for leads.”
BUT… Neurosurgeon already said, “NO MORE!”
Woke terribly slowly from anesthesia (as have in past 3 surgeries!). Arms were numb for hours!!!! Mind awake; body rebelled! Finally left surgical center at 1800 (surgery scheduled for 1315 didn’t start till 1436 according to clock on OR wall!) 37 min surgery; 3 hrs in recovery! Hate the way surgical centers send you home before you’re really awake and safe! Awake and fine by time got home: ate leftover Mexican food from last nite, but way too salty! (couldn’t eat last night: hurt too much! But had time w/Army girl in town for training!), drank hot chocolate and hot Alwazah tea w/mint. Sugar way high! 3 days w/o cinnamon cuz of surgery.
Pain this evening minimal. Maybe anesthesia abating somewhat.
RFA: Radio frequency ablation: heat to pulverize scar tissue and cauterize nerves. I asked my pain Dr about that last week, and he advised it’d have to be redone almost every 6 months to be effective, so SCS best option. At this point, LET’S TRY RFA!!!! Calling tmor to ask.
For those of you worried about my mental health (Remember, I taught junior high for years, so that’s questionable anyway!!!!), although I’m frustrated and TIRED, I’m really not too terribly surprised! This is my body, after all, and it’s been rebelling for quite a while! I joke about rusty hacksaws and recip saws being the best solution, but they’re way too messy! Know several who have lost family members to suicide, and would NEVER CONSIDER DOING THAT TO MY FAMILY!!! (and that’s not being judgmental of those who chose that route: I know that, by that point, they are no longer themselves!) The trauma left behind is HORRIFIC! But I will admit that I’ve given them permission to “LET ME GO HOME!” if anything happens.
BOOKS:
Read Final Flight cover to cover to find mistakes. Replaced several overused verbs. Sent my SPOTLESS copy to my HS bestie/Salutatorian, a 3x published author, and to my college suitemate. Both very astute writers. Not even messing w/publisher’s editorial team! Once I get SPOTLESS copy back from both of them (I’m certain they’ll still find mistakes!), I’ll send it to publisher to print as is! Guess I oughta answer editor’s email from 2 weeks ago to tell him, that, huh?! (I’m so bad, I just copied and pasted this paragraph to him!)
Finally plugged in external disk drive (bought it five plus years ago after a techie friend saved them from antiquedom!) and inserted Living Again, the “diary” I would’ve written about my Jonathan if I’d been a diary writer. (And now I’m a blogger! See why I never diaried??!? Lol!)
Enjoying reading his story! Wrote as VERY MEDICAL Christian romance, but this couple barely meets till Ch 8, so no publishers would even consider! So much background on their medical kids to create the story behind the story/romance. One publisher even suggested I write for a medical journal! Lol!! Just a mom of a special needs kid telling his story!
What blew me away was the little girl I wrote about. She’s real: I met this precocious princess w/craniofacial microsomia at our Craniofacial Christmas party 30 years ago (about when I wrote Living Again!). But craniofacial microsomia is OUR JOY’S DIAGNOSIS due to Fetal Alcohol Syndrome!!! Twenty (20) yrs later, we see and choose to adopt a Vietnamese girl whose diagnosis we didn’t know, just because we saw her in a Show Hope ad and KNEW SHE WAS OUR DAUGHTER!! Bawling realizing God’s sense of humor and timing!
So now I have another dilemma: Pirated Plot, Trust and Forgive, & Living Again all need to be published! Guess I’ll explore Amazon publishing, since others are too expensive. Don’t want to spend kids’ inheritance publishing books that may or may not ever really sell. Knowing the market now, Final Flightis most likely to “make it,” then Trust and Forgive. Wrote Saving Beach Mansion as a tribute to my hometown and parents/grandparents, but probly limited audience outside Texas Gulf Coast. Who knows? Lots EMS, so maybe ……?
Can’t go HOME till books done. Not interested in writing any more: enjoy writing, and they just “happen” as I start writing (pantser, no planning!), but getting them published is a PAIN IN THE REAR (And I, of all people, KNOW what a PAIN IN THE REAR really is!!! Lol!)
So now you know “THE REST OF THE STORY,” but not really, cuz it’s an ongoing saga of drama!! Hoping for more answers soon on all fronts. Will blog again when I have something significant to share.
Oh, and family Thanksgiving was VERY DIFFERENT w/Mama gone HOME. Olive Garden w/everyone (so GLAD THEY ALL CAME!!!! Including a nephew we haven’t seen in 2 yrs!) (Food was mediocre: we’re SPOILED ON VILLA DIANNA! Service was good!) Ok, everyone but our Army girl, who’s here this week for training, so we’re having another family dinner w/her this week. San Antonio family won’t be able to make it. Sad.
Remember that JESUS IS THE ENTIRE REASON FOR THE SEASON OF CHRISTMAS! REMEMBER AND HONOR HIM ABOVE ALL ELSE!
Got the “clean” copy of Final Flight back, w/all the alleged corrections. NOT SO MUCH!! Not only were several things not corrected as instructed, in reading cover to cover to make sure it’s PERFECT, I’m finding things we corrected months ago that are now back to incorrect!!! How does that happen?!??! I’m taking my time, making a SPOTLESS copy of my own after reading thru, making notes and creating a fresh copy w/all those corrections. Sometimes I wonder how Ace Publishing stays in business!! Their editors are certainly not very professional!
Health: The oncologist consult was interesting. He was just gathering info (I’m discovering that most Drs don’t study my records before I come, then ask me what’s going on and “Why are you here?” Seriously????) Lucky for him, I have notes on my phone and an MRI picture of the LUMP in my butt that is the issue! I handed him the picture and said, “This is why I’m here! There’s a fibroid mass at the base of my tailbone. Mayo did the biopsy and said just fibroid, NOT CANCER. It pushes against the damaged nerves from the first surgery (Sept ’23) and HURTS! I’m hoping you can pulverize it with radiation or whatever.”
He advised me that radiation won’t work cuz it’s not cancer. How do you know? Have you ever tried it on fibroid?! He said it might do more damage (as if that’s possible at this point!!). He also lamented that insurance probably wouldn’t cover it cuz it’s not cancer! (Didn’t I say “I almost wish it was cancer so SOMEBODY WOULD DO SOMETHING!!!” ?)
His analysis: “This is basically a fishing expedition.” (Yes, those were his exact words! At least he’s honest!) He’s ordered a new MRI (Last one in April day before surgery) to see if the mass is growing, then will determine a possible course of action. MRI Nov 13th; oncologist 20th.
Postponed SCS that was scheduled for Nov 3rd to Dec 1st. By then, we’ll know if oncologist will tackle this or if I’m relegated to covering up the symptoms rather than SOLVING THE PROBLEM!! (Can you tell I’m a math mom?!)
Water therapy/exercises continue to help a little. Feels great to be in the warm water and be able to walk, tho it’s hurt the last 2 times (never has hurt before!), and is getting harder to do some of the exercises cuz legs have quit functioning properly.
I spend almost 18 hrs/day in my recliner cuz it HURTS TO SIT! Got a new bedsore pillow that’s helping a lot! For those who think I sleep alot, I don’t! I get snatches of sleep between 45 min and 3 hrs before an NPA wakes me. Some so much so that I’m up for a few hours reading; others just enough that the cats on my lap shift and we all go back to sleep. My comfort kitties help me a LOT! My actual sleep hours are usually between 4am and 1pm! Yep, my body clock is SKEWED!
Not much else to report. Our retired Sheriff, a friend, had heart valve surgery a few days ago. Doing WELL! As I sent out prayer requests to various folks, I was AMAZED at the number of FAITHFUL PRAYER WARRIORS I have access to! Different connections: schools, church, homeschool, politics (mostly very godly folks we’ve worked w/over the years!). Grateful for all those we can count on to cover us in prayer!
In case I don’t blog again before Thanksgiving, HAPPY THANKSGIVING! THANK YOU, LORD, FOR ALL THE WONDERFUL BLESSINGS YOU GRANT US, MOST OF WHICH WE TAKE FOR GRANTED! Enjoy the chaos of family gatherings! Mend relationships! Life is too short to let slights and offenses dictate your love for each other! Forgive quickly! Apologize even if it’s not your fault. (I’ve actually done this w/2 different doctors, and the change in their demeanor and communication was remarkable!)
LOVE AS JESUS DID!!! You don’t have to agree with someone to love them! (I don’t even agree w/myself most of the time!) And remember that He never left them wallowing in their sin! His admonishment was always, “Go and sin no more!” That’s a good WORD for all of us! None of us is perfect! Don’t expect it of others, but help them improve AFTER YOU LOOK IN THE MIRROR!
end of preaching!
THE LORD BLESS YOU AND KEEP YOU! THE LORD MAKE HIS FACE SHINE BRIGHTLY ON YOU AND BE GRACIOUS TO YOU! THE LORD SMILE BIG ON YOU AND GRANT YOU FAVOR AND SHALOM PEACE, AND REMIND YOU HOW MUCH HE LOVES YOU! (Numbers 6:24-26, wal version)
Books: Saving Beach Mansion is “in production”!!! WOOHOO!
Final Flight is in “final, final, final edit”! Lol! It took me 3 days to WRITE this book, but almost a year to correct the corrections this publisher did to “help me.” They tried to sanitize my medical and military jargon, dialogue and phrasing! Not their forte, so LEAVE IT ALONE! (No foul language or gore, in case you’re wondering.) They even tried to “fix” the dialogue of the special needs girl in the book! GRRRR! She’s special needs: THAT’S HOW SHE TALKS! I told them that dialogue is the author’s way of character building and to LEAVE IT ALONE!!!
Waiting impatiently for the final draft.
Health:
The real reason I blogged this evening was to update on the medical mess. After multiple calls to multiple specialists (radiology interventionists & fibroid specialist, nephrologist), I learned once again that most are “practicing medicine,” and NOT VERY WELL!! The radiology interventionists said, “We don’t do that kind of thing” when I asked about laser or ultrasound pulverization of fibroid cyst. Called my hubby’s nephrologist: nope. Fibroid institute in Dallas told me you can only get fibroid cysts in your uterus. TELL THAT TO MY BODY AND THE MAYO CLINIC THAT ANALYZED THE BIOPSY & THE MRI THAT SAYS OTHERWISE! They texted back a few days later and demanded I see a GYN before they’d see me! WOW! The mass is at the base of my spine/tailbone! Nowhere near any GYN organs! Not wasting my time on that. Whatever GYN issues I may or may not have are irrelevant at this point!
Finally called Texas Oncology, since all of the various specialists said, “Call an oncologist,” despite the fact that IT’S NOT CANCER!!! (Almost wish it was cancer so SOMEBODY WOULD DO SOMETHING!!) They requested records from my neurosurgeon. That’s serious PROGRESS!! When I called the neurosurgeon’s office to ask them to fax those over, she asked if I had an appt w/them yet. I advised her that they couldn’t talk to me till they got the records. Her response made me laugh! “OH FOR THE LOVE OF JESUS!! I’ll fax them right now!” She did.
In the meantime, the nerve pain attacks have escalated again! My butt HURTS ALL THE TIME NOW! (I wonder if that mass is growing!) A few nights later, having heard nothing, I was in the midst of a BADDDD NPA and did my usual whisper scream,”JESUS, HELP ME!!!!” I’d prayed for favor with Texas Oncology for days. (It’s NOT their forte, so getting in is the big deal!)
You know how sometimes you hear things in your head that you wonder if they’re your own craziness or wishful thinking? Well, I heard, “Tomorrow morning, Texas Oncology will call to make an appointment.”
“Lord, was that you, or am I just wishing!”
“My sheep hear MY VOICE and the voice of a stranger they will not listen to.”
I CRIED!!!
If you know me, you know I seldom SHUT UP long enough for God to speak! Being DEAF has changed that. I write notes on my phone rather than talk, since I get REALLY LOUD w/o knowing it. Mikaylah taught me a cool trick I should have known, as a science teacher: put your fingers on your throat when you speak and you can tell if you’re talking or shouting. That worked before I went completely deaf. Now, not so much!
The next morning, at 11:47am, Texas Oncology called to set up an appt w/ a radiation specialist! (Those of you who know me know that I DON’T DO MORNINGS, so that was GOOD TIMING!)
WED, 29TH, 2PM!!
For those of you concerned about the concept of radiation, let me tell you a story:
When Mom had breast cancer for the 4th time back in ’77, after 2 radical mastectomies and another tumor, she opted for radiation at Wilford Hall in San Antonio (retired Navy, remember). She took the motor home to stay the 6 weeks. Since radiation was a new technology, dosages were iffy. She received MASSIVE dosages. Radiation didn’t make her sick, or lose her hair, or …. She had localized burns where they triangulated the beam, and was TIRED, but the RADIATION WORKED, AND SHE LIVED A HEALTHY, CANCER FREE LIFE FOR 33 MORE YEARS!!! Radiation is my treatment of choice!
SO PLEASE PRAY THAT TEXAS ONCOLOGY WILL TAKE ON THIS FIBROID MASS AND PULVERIZE, OBLITERATE, ANNIHILATE IT WITH RADIATION! I pray the curse of the fig tree (Mk 11) on that lump daily. Withered from roots! Join me! (BTW: I pray that over everyone w/cancer, too.)
Not much else significant going on. I’ll probly post again Wed nite or Thurs after Texas Oncology appt.
It’s AMAZING the things we take for granted!!! Until you can no longer DO what normal people DO every minute of every day!
STAND! WALK! TURN! Pull down your pants to sit on toilet without losing your balance and falling! (Bars by toilet ESSENTIAL!) Put on clean diaper and shorts! (Knit shorts get caught on sox/shoes/toenails. Denim and cotton are firmer material and easier to navigate.) Reacher tool helps, but getting dressed is a SLOOOOOOW PROCESS.
SAFE FOOTWEAR: Skechers hands free slip-ins. (I’ve ALWAYS worn slip ons, but these are BEST because they have a firm back once it retracts to heel.) Ordered myself this pair, then read a funny on Facebook: “Anything you buy between now and Mother’s Day is Mother’s Day Gift!” Lol” (It’s early May.) Not “advertising” for Skechers: I usually buy the generic ones at Wmt, but this seemed IMPORTANT, and they were ON SALE! LOL!
SHOWER: Now THIS is where it gets tricky! We have a shower chair I’ve been using for over a year. It works well for me.
My AWESOME FIREFIGHTER FRIEND JAMES HARRIS put bars in the shower when I had the hip replacement in May ’17. Then my SON, JONATHAN added more as needed.
TUB CONVERSION: We invested in the Lowe’s tub cut-out (and believe me, after tons of research, IT IS THE BEST SOLUTION TO NEEDING HANDICAP ACCESS TO YOUR TUB!! Inexpensive install. Removable slide-in piece if you ever want to use your bathtub as a tub. Low step ( 2″) . Wide opening. Eazy wipe clean!
Back to shower chair: So why are we “shopping” for another one? Because sometimes reaching my back and butt is hard, and I need a chair with a HOLE in the bottom to facilitate that better when it’s not safe for me to stand up to clean my rear. There are multiple models out there with various configurations, but most not as helpful as JUST A HOLE! Most are too wide for our tub! (Home built in 70’s; std tub size not as wide as current, I guess.) One version extends outside the tub so you sit and slide in. Maybe. None are configured to fit in our tub as we have it, it seems, tho they are “reversible” by changing some of the parts around. Many don’t have STABLE arms that I need to push off of to get up.
The one I am currently using in my REHAB room is PERFECT, but I can’t find it anywhere to buy!! Have the model # off it and everything: the website for that company (DRIVE) doesn’t show that model!!! Go Figure! Welcome to my world!
Medicare doesn’t cover these, but I DON’T CARE!! I’ll probly find it at a local medical supply store, since AMAZON doesn’t have it. (And YES, I’m getting my money’s worth out of AMAZON PRIME this year!)
Back brushes: The one I’m using now is PERFECT!!! Long handle (tho the extra 1″ gets caught on the arms of the chair sometimes!) Foam with scrunge on the backside. Can I find these online? OF COURSE NOT!!!! Again, have model #: NOPE! Will ask REHAB Director where she orders her goodies.
In case you’re wondering, I’m rambling at 0100, having SLEPT from 3pm til 9pm. Sleep cycle OFF, but that’s actually pretty normal for me!
WHEELCHAIR: We have ordered a 16″ lightweight wheelchair that should serve me well. I prefer the standard sling back (no pad), but the cushion they have is almost twice my sciatica pillow thickness, which HELPS A LOT! (I’ve been using Marie’s large wheelchair and hate the way I get TRAPPED often due to it’s girth!)
It probly still won’t fit thru the bathroom door, and honestly, as narrow as our bathroom is, having the wheelchair INSIDE the bathroom would be DANGEROUS!! No room to maneuver at all!
I use the rails and the solid vanity, which are not too far apart, to navigate walking in the bathroom. The raised toilet we installed last year is against the wall and vanity, so I can’t “fall off the toilet.” (Well, I almost did once when I leaned too far over to wipe. VERTIGO!)
So after writing this rambling blog, I can tell my AWESOME OT GIRL, DANIELLE that I don’t NEED the crazy contraptions they’re recommending, but will just order what THEY HAVE BEEN USING FOR ME!!
PROBLEM SOLVED!!
SHOWER ATTACHMENT: I still need the type of shower attachment that so many already use: The shower head that snaps onto a bar, slides up and down, etc for easier access. Lotsa good possibilities out there. We’ll see what Larry and I agree on, since he likes “shower” and I like “TORNADO!!!!!” Filters not a biggie to me; just shower massage. Getting the bar low enough for me to reach will be the issue. JONATHAN will get it done w/o even blinkin’ an eye!! That young man (my sweet Baby Boy!) can do/fix ANYTHING!! Don’t laugh, but most of his training has been YOUTUBE videos, and they REALLY WORK!!!
Reacher tools: Do you know what the greatest problem with a reacher tool it??? IT’S NEVER WITHIN REACH!!!!
OT Danielle created an attachment to my wheelchair with a strip of foam, velcro, and a rubberized line so that I could have mine w/in reach and use it to stretch the places I’m not supposed to stretch yet. BRILLIANTLY MADE!
BUT… If Im not careful, it gets caught in the wheels of the wheelchair as I’m rolling down the hall! Not just the line, but the reacher itself! (It’s supposed to sit beside me in the seat, but I’m not always diligent to get it there!)
OPERATOR ERROR!!!! MUST CORRECT!!! (do you hear the warning alarms going off!!?)
We invested in the folding reacher tool at Wmt. Pushing the button to release it to unfold is HARD!!!! The claw only engages when it feels like it! Haven’t used it enough to outsmart it, but I will!
Getting sleepy, which is a good thing. Two salty snax and a sweet snack as I write. They brought me a Pepsi (hospital must have contract w/Pepsi, cuz it’s actually on the menu.) and cup of ice as requested a few hours ago. I HATE Pepsi, but sometimes, you just NEED a dark cola carbonated caffeine jolt to get you going!!! Thinking on paper is my lifeline, so this has helped. TMI for some; interesting reading for others: solutions for me!
GOOD NIGHT! May the Lord grant you RESTFUL SLEEP so you can walk in your anointing tmor to impart DYNAMIS POWER to help others with GRACE & HUMILITY and grant them SHALOM PEACE!
I don’t really even know where to start, but am COMPELLED to share with you, Shelly’s BEST FRIEND, AWESOME HUSBAND, and now widower. (Such a sad word!)
SHELLY SUE was the most COMPASSIONATE, CARING, KIND, GENTLE, WISE, STRONG & SPIRITUAL WOMAN I’VE EVER KNOWN!! Shelly NEVER JUDGED! SHE LISTENED! SHE EMPATHIZED! SHE CARED DEEPLY FOR THOSE THAT NOBODY NOTICED!
Shelly completely embodied the song, “AS A DEER!” SHE LONGED TO WORSHIP IN EVERY ASPECT OF HER LIFE, AND DID SO WELL!
Shelly was a PRAYER WARRIOR! Not only did she pray OVER people and situations, she prayed THROUGH THEM!
She mentored sooooooo many along the way!!! I’m sure she passed pieces of her MANTLE OF ANOINTING TO MANY!!
So here’s how she impacted me: Tho we seldom physically connected. I never felt like we’d been apart! I wish I had kept closer tabs on y’all to know her journey! Last I heard, SHE’D BEAT THE CANCER!! But I know that little c word is INSIDIOUS and often sneaks back in when we least expect it, and some organs just can’t fight as well as others. (funny: I have her as a character in the end of one of my novels: she’s just BEATEN THE CANCER and is helping her bestie plan her wedding!) I WILL GET THAT BOOK PUBLISHED FOR SHELLY!! )
In case you didn’t know,I’m a bit ADD, so I digress alot! Read my blog wynnelovelesswrites.com to see how badly!!
My journey:
In June ‘23, while on a trip to Maine, I had an EXCRUCIATING NERVE PAIN ATTACK that literally doubled me over. I was already using a rollator walker because my left titanium hip wasn’t working well. When I got home, I called my orthopedist, because the “nerve pain attacks” (I now call NPA’s) were escalating. He ordered an MRI and said other than my ABSURDLY HORRIBLE SCOLIOSIS, which was probably pinching a nerve, he didn’t see anything. He wrote it off as sciatica and said the hip was fine. He didn’t read the report well, “POSSIBLE NERVE SHEATH TUMOR ON LUMBAR 4 – SACRAL 1”
I went to a neurosurgeon when it didn’t get better. MEDICINE IS A MESS!!
Dr. Lapsiwala saw the MRI, was GREATLY CONCERNED THAT I HAD A TUMOR IN MY SPINE, but ….. He was OUT OF NETWORK, so I had to go elsewhere!!!!
Funny interlude: What do normal people do when they’re told they may have cancer!??
Jonathan had taken me (Larry is NOT GOOD WITH MEDICINE, and Jonathan is an EMT now.) I TOOK MY BABY OUT FOR MEXICAN FOOD! DUH!
Insensitive me: when we got home, Larry came out to ask what we found out, and I said what I just said above. Larry almost FAINTED!! His dad died of cancer! My mom BEAT IT AND LIVED ANOTHER 40 YEARS! Little “c” cancer has never scared me, cuz I have a BIG J JESUS!
Fast forward to late August ‘23 by the time I got a referral & appt w/an in-network neurosurgeon. He required another MRI. I have a pacemaker due to my AFIB (Now that’s another long sordid story!), so it takes a few weeks to get that scheduled! Late Aug, MRI done, surgeon wants to remove apparent tumor. (I have pix of all MRI’s if you want some serious TMI!)
Surgery Sept 5, 2023. Removed small mass; nerves started misfiring and afraid he’d paralyze me, so stopped. Sent sample to lab: “Never seen anything like this before!” (Are you surprised?! I wasn’t !) Sent off to MAYO CLINIC! Just blood. No cancer. No irregular cells.
Nerve damage that was already started by the pressure of the tumor on my spine was exacerbated by the surgery. Loss of feeling from the butt down (stop laughing!), numb feet and legs, minimal ability to lift them and move well. Walking is like walking on fence posts: I’m doing it, but can’t feel a thing! Rehab helps somewhat, but due to the OUTRAGEOUS TINNITTUS FROM MY 2 FAILED COCHLEAR IMPLANTS (YEP! I’m a MESS!), VERTIGO makes it best to revert to a wheelchair for balance and safety issues. I make myself walk occasionally so my muscles don’t completely atrophy and leave my legs totally useless!
Surgeon left the state!! Had to WAIT again for referral and appt w/new neurosurgeon at UTSW in Dallas. Loved him: kind, conservative; let’s just watch it! MRI seemed to show no new change (but it sure looked the SAME TO ME as the first one, with a bit more. Just watching and taking MRI’s every 6 months, tho symptoms persist as before (but not escalating); No pain or nerve agents help at all: make me dizzy, but no effect on NPA’s. Prescribed several different pain and nerve block Rx: NOPE! Honestly, 3 ibuprofen work best when it’s bad!! My “pain mgmt Dr” gave up on me!
Tests were run to see if I would benefit from an Spinal Cord Stimulator (SCS), where they insert an electrode into the spine to shock the nerves to tell them to stop misfiring. The MRI showed that my stenosis from scoliosis was so bad, there was NO ROOM FOR AN ELECTRODE!! (and you KNOW how tiny an electode is!!!) That didn’t really matter to me, since I had ordered an external version while waiting, and it MADE THEM WORSE INSTANTANEOUSLY!!! NO THANKS!!!
Got a letter stating that this new neurosurgeon has left the state!!! I HAVE THAT EFFECT ON PEOPLE!!
No answers. In limbo. Symptoms continue.
Started water therapy! Water is my FRIEND!!! No gravity, so I can DO THINGS WITH MY LEGS I CAN’T DO ON LAND!! (In case you didn’t know, I’m actually part mermaid!)
Between Dr’s leaving the state, insurance changes (REMEMBER, we turned 65 and got to join the DELIGHTFUL WORLD OF MEDICARE!), I lagged for another several months, but the symptoms started DRAMATICALLY INCREASING!!
Got an appt with MEDICARE Neurosurgeon, and HALLELUJAH, it was Dr. Lapsiwala, the one who first diagnosed me that I loved and TRUSTED!! New MRI scheduled quickly (like he literally told me to go to ER for a 2nd one when he saw it that day!!!) Tried to do a myelogram where they inject dye into spine to get a better pic of tumor. EXCRUCIATING!!! Told the tech to keep doing what he needed to do to get answers! Stenosis so bad, MRI EXPERT couldn’t get needle in for dye and said if he’d seen MRI first, he never would’ve tried cuz it was NEVER GONNA WORK!
Admitted me! Kept till Thurs (that was Mon), but couldn’t schedule surgery till following Wed. Sent me home for weekend. Enjoyed Joy’s Plaza Theatre Play, Newsies and got to be “the bag lady” who bags the food containers for our Homeless Outreach Sunday!! SOOOOO HAPPY to have some NORMAL AND GET TO SERVE!!!! But ¾ thru the Homeless Outreach, tremors hit and I couldn’t use my hands! Had to pass the torch! Cried! Could barely get from wheelchair into car! (Did I tell you I had to sell my beloved truck, Bobby, cuz I could no longer get safely into him!!! I CRIED AND CRIED AND CRIED!!) We had bought a Honda Odyssey van cuz Jonathan had one we could get into easier. It’s really NOT easier: all smooth surfaces!! Nothing to grab ahold of to pull yourself in!! But those door handle helpers you see ads for WORK (until my hip give out and Joy literally has to LIFT ME INTO THE VAN!!!)
Forgot to mention that Larry had neck spinal fusion surgery May ‘24, so he’s very limited in liftng, etc, and his knees keep him from doing much! If we had not adopted JOY, we’d both be in ASSISTED LIVING!!!! GOD HAD A PLAN!!
Mon, Apr 21st: Run a million errands trying to get my ducks in a row, and they’re really just SWARMING PIGEONS!!!!
I can’t drive any more due to the vertigo and and and, so Larry has become chauffeur, taking Joy and I everywhere. EXHAUSTING, BUT HE’S NEVER COMPLAINED!
Had a GLORIOUS trip to Florida planned for May 11-19: Meet Mik in Tampa: swim w/Manatees! Drive down the coast; Miami, Everglades airboat tour; drive down Keys: dolphin swim at Dolphin Research Center, and they CATER TO HANDICAPPED!! Drive down to Key West and ferry over to Dry Tortugas for history buff Larry, then fly home from Miami.
ALWAYS BUY TRAVEL INSURANCE!! I actually called each venue personally and explained: Cancer surgery, rehab, maybe radiation; CANCEL. All were very helpful and accommodating w/o having to use trip insurance, and cancelled and refunded well (one requires a Dr letter, as if anybody is gonna really READ that!!) . But SOOOO GRATEFUL we had travel insurance just in case!! $400 well spent for peace of mind, and they can slide it to a future date if I book new trip by May 11th (Not hap’nin!)
Dr office called Fri or Mon?: Surgery scheduled for Wed, Apr 23rd, but kept getting texts reminders from the hospital to come Tues, Apr 22nd 0530
Called Medical City Ft Worth surgery scheduling (who know me well!) and they said, “Call your Dr office to verify”
Called Dr office at 4:30 pm: VOICEMAIL!! Emailed URGENT. No reply!
We are on our way to Texas de Brazil, and my BRILLIANT HUSBAND WHOM I HAVE TAKEN FOR GRANTED FOR 40 YEARS say, “Let’s just go by Drs office now; not that far.” So at 4:52 Monday, Joy runs into the office to Facetme them for me. They are APPALLED, but CONFIRM THAT SURGERY REALLY IS TUESDAY!
I am DEAF!, so ALL PHONE CONVERSATIONS ARE IN WRITING IN CAPTIONS. I HAVE IT IN WRITING IN 3 PLACES: WED, APR 23RD!
So GRATEFUL LARRY SAID LET’S STOP AND MAKE SURE!!! I’M GLAD IT’S TUESDAY!! DETERIORATING AT A SCARY ALARMING RATE: Legs not working; TREMORS!!! Blurred vision (some from tinniitus and stupid no-line trifocals!)
Went to Texas De Brazil Mon nite and GORGED ON MEAT, since it was a rebook of our 40th anniversary dinner, where I ENDED UP IN THE HOSPITAL cuz of a FALL from this mess! Mik made me go! I would not have! She had just arrived home for Christmas leave and I SCREWED THAT UP!!!!
You know, if this were comedy, it’d be FUNNY! BUT THIS WAS OUR LIFE!!
BTW: Larry can do as well or BETTER than Texas de Brazel. It’s the AMBIANCE AND FLARE that make it so EXPENSIVE. All the food was STELLAR, as was SERVICE (and I’m in a wheelchair, so that takes extra attention.) Just saying that we need to get Larry those same cuts of meat and let him BBQ
I keep a hospital backpack packed (sad, but true!), and Mon nite, started pulling superfluous stuff out and repacking! It was ALREADY PACKED!! But there were too many toiletry things I wouldn’t need. Always have a deck of cards! UNO! Spare cath supplies (That’s a whole story in itself!). One set of clothes (besides the ones you’ll be wearing to the hospital). The night before any surgery, I seldom sleep. Not up praying like you’d expect, just piddlin’, getting things straight, logging receipts and medical bills.
I TAUGHT MATH AT JUNIOR HIGH INNER CITY SCHOOLS AND CROWLEY HIGH SCHOOL! NOTHING SCARES ME!!!!
Tuesday morning, arrive hospital: check in, prep for surgery, talk to and pray for surgeon, anesthesiologist, anesthetist, nurses, etc. Off to sleep. Surgery update is a different blog!
Fast forward to 2nd day in Medical City’s Rehab facility.
THIS IS WHERE SHELLY FITS IN!!
0330, a nurse named CELESTE (older male) came in to follow orders and remove my foley catheter and scan my bladder to see if I was retaining urine. I explained to him that I’d been self-cathing for a year and a half, and YES, my bladder would be full and YES, I could take care of it myself if he could get me to the toilet. (Remember, my legs have very little feeling, my hip does what it wants, and sometimes I really CAN’T get from one place to another on my own! HUMBLING!!)
He was so professional, kind, compassionate, and I never felt defiled (not that I ever do, but he was ANOINTED TO RETAIN HIS PATIENT’S DIGNITY!!) After he left, God told me to pray a stronger outpouring of that anointing over him.
“Uh! Wrong person, Lord! I don’t DO that!”
Silence.
“SHELLY DID THAT!!!” Tears! “God, Shelly was SOOOOOO ANOINTED TO PRAY OVER PEOPLE!!!”
Silence.
You see, Joe, most people think I’m spiritual, but I’VE NEVER BEEN SPIRITUAL!!! I FAKE IT WELL! Spent years teaching in Christian schools when I was barely living for the Lord, hardly ever prayed or read my Bible…. After a dear friend died after a VALIANT LONG FIGHT against leukemia, my faith failed and I said, “What’s the POINT?!?” But the words of Peter brought me up short:
Jn 6:68 Simon Peter answered, “Lord, to whom will we go? YOU HAVE THE WORDS OF ETERNAL LIFE!!
That kept me hanging on.
Then a dear friend, whom I resented for doing so, continued to send me Gloria Copeland Healing School videos, and took me to 2 different crusades. I was NOT HEALED AT ALL in either (that was way back when we were focusing on my AFIB and hearing.) But I did read and quote the healing verses as instructed, just not as diligently as I should have.
Back to Celeste: “Lord, Shelly did that!” (Yes, I said it several times!)
Then it HIT ME LIKE A FREIGHT TRAIN!
It seemed arrogant to even consider, but this is what came out of my spirit.
“Lord, can I have Shelly’s mantle of anointing?! I don’t deserve it! Not even sure how to use it, but Lord, I’d love to have SHELLY’S MANTLE OF ANOINTING!!
God LAUGHED!! Like He’d been waiting for me to ask!!
“Shelly would be DELIGHTED FOR YOU TO HAVE HER MANTLE!!!”(I’m bawling writing this, cuz it’s still so fresh and new and powerful and humbling and overwhelming and indescribable!!!)
I didn’t feel anything special physically (Like the mantle falling on my shoulders), but this BUBBLING UP STARTED!!I CAN’T STOP PRAYING FOR EVERYBODY! God gave me a special prayer for Celest (haven’t seen him to share yet!) and has me praying over every person I meet, not just the Num 6:24 blessing I’ve used for a few years (Say that over the Sonic kids when they deliver your food!! It’s INSPIRING!!), but ANOINTING THAT BREAKS THE YOKE OF BONDAGE of …… (so many things in a hospital!)
THE EXPLOSION OF GOD IN ME IS INCREDIBLE, AND CAN’T STOP IT! LOVE IT!
Everyone is RECEIVING IT AND GLAD TO HAVE ME PRAY OVER THEM! DRS! NURSES. CNA’s. Cleaning lady! Cafeteria staff. PT STAFF! (actually counseling one now who’s divorced and having a rough time w/her teen daughters! DRAMA! God gave me a whole page of fun, easy ways to build relationships. I KNOW THAT’S SHELLY!!
JOE! HER LEGACY WILL CONTINUE IN SO MANY WAYS THRU SO MANY PEOPLE!!!
YOUR LEGACY: YOU ENCOURAGED HER, SUPPORTED HER, PRAYED WITH HER, WARRED WITH HER, LET HER WALK IN HER ANOINTING!!
(So many husbands are intimidated by POWERFUL wives and either stifle or discourage them, but YOU WERE A TEAM!!! YOU WERE A MIGHTY FORCE BEHIND HER!! THANK YOU!!!)
TWO YEARS SHE’S BEEN GONE TO GLORY! GLAD FOR HER! DEVASTATED US!! The wound never really heals, but knowing how POWERFUL HER LEGACY IS makes it a bit easier to bear.
Other side notes: When I have an NPA, I sing Scripture songs to help them pass as I pet the Lite Dragon Ty Beanie Baby (HAPPY!) my G’daughter gave me the Sunday after surgery when I was DEPRESSED!! The other day in PT, I was singing “As a Deer,” and started bawling, as I always see and hear Shelly singing it w/her guitar. Then the 2nd verse started, and I was A MESS!! We wrote that verse together and she tweeked it PERFECTLY!!! Crying now just remembering those SWEET TIMES OF WORSHIP TOGETHER!!!
ALSO: The last time I talked to Shelly, she had BEATEN THE CANCER!! She is a character in one of my novels, “Pirated Plot,” having beaten cancer and come to help her bestie plan her glorious wedding! Her part is about four extra chapters cuz I COULDN’T STOP WRITING ABOUT THIS VIVACIOUS, FUNNY, LOVING LADY WHO PUT HER LIFE ON HOLD FOR HER FRIEND! I WILL GET THAT BOOK PUBLISHED! (or at least online so folks can meet Shelly Sue!)
Ok, I think I’ve exhausted most everything! This letter has been CATHARTIC for me! I’ve probly benefited from it more than you, but you needed to KNOW!!
SO DELIGHTED WE GET TO SPEND ETERNITY TOGETHER!!!! WON’T THAT BE A HOOT!
Where do I begin to tell the story of how GREAT A LOVE CAN BE!! GOD’S SWEEET LOVE STORY ….
This whole page started becuz folks want to see that you are real and can share. It was about books. But NOW, it is about SOOOOO MUCH MORE!!!!
I realize that some of my “followers” (I find that HYLARIOUS!) are only interested in books. I’ll start posting separate blogs labeled “BOOKS”, “Med Update” and “Spiritual Journey” to release those who aren”t interested in the other topics. (Fer dis, I’s gots ‘n injineerin’ degreeee!)
So here goes:
BOOKS: Both Saving Beach Mansion and Final Flight are waiting for my final approval to be published. Medical issues have delayed that, so I am hoping to finalize them in the next few weeks. Both covers are approved, and I am PLEASANTLY SURPRISED at their outcome! (Hate reading a book and realizing the cover has NOTHING TO DO WITH THE BOOK!!!)
I WAS WRONG!!!! THERE IS NO WAY TO SEPARATE MEDICAL FROM PERSONAL FROM SPIRITUAL!!! SO HANG ON!!!
MEDICAL UPDATE: This will be long, sometimes TMI!! I’m trying to copy from a note in my phone I sent as an update /prayer request.
Some of this is INTERESTING! Some scary to those who don’t know me. Some FUNNNNNNNNYYYYYY!!! Some INCREDIBLY INSPIRING!!
Wynne Loveless <wynnermath@me.com>
11:49 PM (5 minutes ago)
to me
Update
Yall got left out of loop! SORRY!
Short version: the blood clot in my spine from July ‘23 really was a tumor : the blood clot just masked it. It is growing and expanded. It is now from my shoulder blades all the way down to my tailbone! Inside multiple vertebrae! It’s causing quite a bit of neurological issues (tremors, PAIN, blurred vision, weakness in hips/legs) so surgery will be Wednesday to get this thing out of me
If it was gonna kill me, I’d be DEAD by now!!
Surgery scheduled:
Surgery is scheduled for Wednesday morning, April 23. I have to be at the Medical City FW hospital at 05 30 (Actually got moved to Tues, 22nd, which MADE ME GLAD!!!! Dramatic deterioration over weekend!!)
BTW: We went to Texas De Brazil for my “last meal” Monday nite. It was originally scheduled for Dec 28th for our 40th anniversary dinner, but I ended up in the hospital! RUDE OF ME!
GORGING ON MEAT THE NIGHT BEFORE SURGERY PROBLY NOT THE BEST PLAN, BUT IT WAS GOOD!! OUTRAGEOUSLY EXPENSIVE! LARRY CAN COOK THOSE PIECES JUST AS WELL!!!! IT’s all about the AMBIENCE! The service was STELLAR!! I’m in a wheelchair, and they were most gracious and accommodating!
The PLAN:
(Some of this may be repetitive: sorry: too much trouble to navigate back and forth to fix!)
Dr Lapsiwala will not be exercising the tumor at the base of my tailbone. He said that one will probably need radiation. He’s gonna be working on the lumbar part above the previous incision & scar tissue damage .
I will probably be in the hospital for several days and then probably in rehab for two weeks. Medicare covers three weeks. We’ll see what happens. (I was approved on May 6th to stay til May 21st if necessary. Peace of mind for my family. I WILL NOT BE GOING TO AN ASSISTED LIVING FACILITY, but those of you who know me know I’d never submit to that anyway: THEY WON’T LET ME BRING MY KITTIES!!!)
I am at perfect PEACE with this plan. I’m ready to get this show on the road and get the stupid tumor out of me. SLAY THIS DRAGON!!
SIDE NOTE:Getting my “ducks in a row” and realizing they are SWARMING PIGEONS!!!)After spending a few hours on the phone and on the Internet, I was able to cancel all of our GLORIOUS May Florida trip plans to swim w/manatees & dolphins with no difficulty: all refunds no cost, but I’m so glad I got trip insurance! Warning: Yankee Ferry to Dry Tortugas (for my history buff hubby) : all sales final; no refunds. BUT…. when I called, they said I could send a Dr’s note and they’d refund. Who’s really gonna read that Drs note??!!? (I’m a teacher! I know!) Letter on the way from Dr. (Got the letter from his sweet staff Wed nite: sent to Yankee Ferry and AA.com to get full refunds (not just flight vouchers!) DONE ! All refunds should be in our accts w/in next week! Amazing the things you can get done while lying in a hospital bed w/a laptop! )
Will update as things go along.
Not sharing on FB: dont want folks accidentally praying me into the grave!!
This ornery old lady still has WORK TO DO FOR THE KINGDOM!
Surgery update Tues Apr 22, 2025:
Surgery really WAS today! (Dont ask! Chaos was annoying but GLAD it was Tuesday cuz neurology issues escalated!) Had my BRILLIANT HUBBY not said, “Let’s swing by the Dr’s office to make sure!” on the way to Texas de Brazil, at 4:52 Monday when nobody would ANSWER to let me know if it was really Wed or Tues (multiple text reminders from hospital made it clear it was gonna be Tues, but surgeon’s office said Wed! Got it in writing!! I’m DEAF. ALL CALLS ARE CAPTIONED!) Anyway, Larry stopped at surgeon’s office, Joy ran in and Facetimed so I could get an answer: “YES, TOMORROW!”
I WOULD HAVE MISSED MY SURGERY!!
Surgical Report: Tues, Apr 22, 2025
Removed some blood clots and some firm white substance in several pieces. Sent to lab for checking. Didn’t look like cancer to Doctors but doesn’t look right.
Sending it off: DE JA VU!! No results expected for 2 weeks. In Rehab, so not like it matters or I’m going anywhere!
Interesting!! My assessment:
White chocolate that dark chocolate has imprisoned in my spine for being FAKE!!
Awoke well. Little pain: just UNCOMFORTABLE all over from lying flat! Acid burns on cheeks from intubation tape! I intend to have a personal conversation w/the anesthetist to TEACH her and prevent that from EVER HAPNIN to another patient! Three cleft kids: lotsa tape over the years: no tears!!! One drop of vaseline or baby oil (best, but hospitals don’t allow.) WAIT!! Usually, the tape will slide right off! If not, repeat, use a vaselined qtip to roll under corners of tape, and GENTLY remove. NEVER AN EXCUSE FOR THE BLISTERS ON BOTH CHEEKS AND CHIN!!! HUGE BLISTER ON CHIN started weeping everywhere at 0200. No pain, but NOT ACCEPTABLE!!
Waking up, dreamed 3 movies of book series of follow up of Christian romance suspense novels to accompany Saving Beach Mansion! Hope I can recapture! Thot I was done writing!
Lost all feeling & movement in left leg (which has a titanium hip that hates me already!) Slowly regaining tonite. I THINK I’M GOING TO ASK FOR A REFUND ON THAT HIP, LOL!
Staff @ MEDICAL CITY FORT WORTH HAVE ALL BEEN PHENOMENAL THRUOUT MY PAST 7 YEARS OF AFIB & TUMOR ISSUES!!!
KIND! COMPASSIONATE!COMPETENT!!
COMMUNICATIVE!!! (Remember I’m deaf now!)
Side note: Harris (12 days last Dec/Jan from fall cuz of “flu” I never had symptoms for & they barely treated w/one bag antibiotics! It was really UTI they never even tested for!!) Care was mediocre (nurses good; hospitalists not so much!) w/poor communication & HORRIBLY DISGUSTING FOOD!
MCFW GOURMET MEALS!! Communicate and specialize. And THANK YOU, JESUS, NOT THE CARDIAC NO TASTE FARE! When the steroids make me “diabetic,” they let me know what I can’t have.
For those of you who don’t know, steroids SCREW UP YOUR BLOOD SUGAR!!! Not worried: no biggie; they’re giving my insulin to balance it and I know it’ll “come out in the wash” in a week or so when they reduce the steroid dosage and my body flushes that poison that’s helping the swelling from surgery.
MCFW HOSPITAL OF CHOICE!!!
Family finally breathing sigh of relief somewhat! They have suffered far more than I watching my scary decline!
Mind ok, tho slow (Stop laughing!!! I taught JUNIOR HIGH!!), but body was deteriorating dramatically!!
Expecting recovery of much now that pressure off spinal cord. We’ll see & WORK for it! (tho nerve damage, medically speaking, doesn’t recover well w/o THE BLOOD OF THE LAMB & THE WORD OF MY TESTIMONY THAT ABBA FATHER, DADDY GOD THE GREAT I AM IS GOOD & JESUS IS MY JEHOVAH RAPHA HEALER, JEHOVAH NISSI, MY BANNER BEARER IN THIS FIGHT; MY JEHOVAH SHALOM, THE PEACE THAT PASSES ALL UNDERSTANDING CUZ I TRUST HIM! JESUS IS MY REDEEMER! RESTORER! DELIVERER & WE WILL PREVAIL BOTH HERE & ETERNALLY !)
MOVED TO REHAB: Although BSW REHAB was GREAT last time, my surgeon does not have access to me there, and my coverage is 100% here, so NO BRAINER: STAYIN’!!!
PT facilities and staff BEST ON THE PLANET!! Have and have shared some ideas to make even better. They like my ideas! I’ll share later.
REHAB UPDATE: Grueling cuz body tires easily, but well-planned and spaced to maximize growth. EXCEPTIONAL PT & OT staff: Danielle and Natalie!!! (Several other helpers, but these are my MAIN GIRLS!)
I’m learning to LISTEN TO MY BODY! When I feel the fatigue that would make me fall, I STOP AND REST!! (I’m an ADD HYPER CHILD, so that’s A BIG DEAL!!)
Honestly, the TINNITUS FREIGHT TRAIN ROAR in my head is more of a hindrance to my rehab than my lower body muscles and nerves!! It’s like a huge weight on my head that feels like it’s gonna EXPLODE!! Not a headache: just overwhelming NOISE distorting vision and all balance and robbing me of stamina! (and yes, I’ve tried every great “fix” on FB or ….. and from audiologists. One wants to introduce “white noise”!)
“Ma’am, I already have 5 different noises in my head: freight train/transformer buzz, high pitched whistle, cicadas chirping occasionally, etc “(the bassoon ditty blog is interesting. That has actually stopped!)
I DO NOT WANT ANOTHER NOISE IN MY HEAD!!!!!!
WHAT ARE YOU THINKING?!?!?
PT is different every day, of course. Some days better than others. Fatigue in legs, hips and back keep me from standing more than 32 seconds on my own! Getting UP is the hardest part: have to have hands, feet in exactly the right position to convince my body to LIFT UP! BUTT UP or hips give and back into wheelchair! NOT GOOD! Learning to outsmart body!
Transferring (from bed to chair or chair to walker or pedaler) is iffy:
I cannot move my legs by myself!! Literally must be lifted into the bed and I drag them out of the bed to hang off side to get up!
Sometimes my right leg will MARCH or swivel as asked (Yes, I literally talk out loud to my feet to tell them what to do!) ; sometimes, it is rebellious, as I confess I have been most of my life! When it won’t move right, I reach down and move it (remember, I cant bend, twist, etc after surgery, so just reach to the back of my dead thigh* (Nerve conduction test in March showed NO CONDUCTION AT ALL ON BACK OF EITHER LEG!! Slow on top/thighs, poor on feet, sides of legs. ). But WAIT!! I don’t have the balance or strength to do that, so the PT girls have to shove my foot where it belongs (gently, of course!)
Walking: UP with walker. Once up, I can go anywhere from 12′ to 41′, depending on fatigue. I don’t FEEL my legs! It’s like walking 0n fence posts! I know they’re there, but ….My feet have been numb since the week before the first surgery in Sept ’23, so finding the ground is quite interesting! I have to LOOK at where my feet are getting out of vehicle or bed or chair, cuz I can barely feel the ground beneath my feet! (another song?!)
Pedaling is my FRIEND!!! Requires PUSH with legs and continued growth. Set at 3, pedal for 10 min. Used arms, too, y’day.
May 6th: MUCH STRONGER!!!! Walking further (50′) before fatigue says STOP! Standing in cool brace machine that lets me do puzzles, non-reaching activities (trying to be good and not reach, twist, bend!), etc. Gotta figure out how to get some of these pix uploaded. Leg lift exercises w/weights and bands (funny the things we do daily w/o thinking, TILL YOU CAN’T DO THEM ANYMORE!!!)
VICTORY!!!! I was able to get my legs back into bed by myself today!!!! Slow, steady, wore me out, BUT I DID IT!!!
I’m learning a cool trick to keep from letting gravity win in bed. If they tilt my head all the way down, there’s a bar at the top that I grab and pull myself as far up as possible. Remember, I’ve torn both rotators in falls, so my arms only do so much, and my butt weighs about 100 pounds and has NO FEELING AT ALL and won’t lift, so it’s a challenge. I bend my knees, PUSH back, wiggle my butt, pull on top bar and MAKE IT!! Except Natalie told me today to STOP DOING THAT so I don’t strain my back and do damage!! Rats! Learning to get my butt as far toward head of bed as possible when I climb back in bed. It works.
SMALL VICTORIES MATTER!!!!!
Sleep is elusive. Short naps between finger sticks (blood sugar all over the place cuz of steroids! Not worried! Will settle out in another week as they eliminate steroids.), rippling nerve pain attacks (that are NOT AS INTENSE OR AS LONG, THANK YOU JESUS!! ) , and just general wakefulness. I SLEEP HARD AND WAKE HARD!! Slow waking. Need drink cuz mouth so dry I can’t breathe. (Mouth breather, I guess)
Today, the CNA was ALARMED cuz my blood sugar was 59 and she couldn’t wake me! Finally got me awake and told me to drink apple juice and eat my strawberries. (I’m officially HOOKED ON STRAWBERRIES!!! Ask for them every meal! But wonder if they’re causing some of the diarrhea?)
I sat up, drank, ate, etc. Told her I’m FINE and FEEL IT when my body is in HYPOGLYCEMIA.
Funny story: I actually passed out at the counter of the PO New Year’s Eve ’23! Felt it coming: asked “who has a candy cane? My blood sugar’s dropping!” Next thing I know, there are three men standing behind me holding me up while the PO clerk looks like he’s about to FREAK! Ambulance came; lady gave me a peppermint; under my tongue; FINE by the time EMT’s got to me, but went on to hospital so Joy wouldn’t freak. (As if either going or not going would be best for her! Next time, refuse treatment, sit in truck til recover fully, then go home!)
I have had a few 6 hour nights. Since I’m naturally a nite owl, 0200 to 0715 is a pretty good stretch for me! They bring breakfast at 715 (BACON!!!! Hard boiled egg; English muffin; Almond milk, hot tea), and I barely have time to eat, go to the bathroom (remember, that’s a slow process, tho cathing is quick and easy. Gotta get out of diaper and shorts, cath, replace diaper (and no, I don’t mind calling a diaper a diaper! It is what it is! IIWII!) and shorts and hope my body doesn’t want to POOP, cuz that’s a 45 min WAIT FOR GRAVITY ordeal! ) before they come for me for first session! I think I’ll set my alarm for 0615 so I don’t waste PT time peeing and pooping!
HOT SHOWERS ARE THE BEST!!!!! Slow process. Proper tools, but OH I LOVE SCALDING SHOWERS!!!! And therein lies another problem I must be careful of: Since I don’t FEEL my legs and feet, I could easily SCALD THEM! So I have to adjust the water to what’s my fave “scald” level for my head and chest, them go from there.
But the shower WEARS ME OUT! Sucks all the energy out of me!
We did a bit more work afterwards (Shower is actually part of OT: what you do on a daily basis), but I was SPENT and didn’t get much more done. (I was so tired, I honestly can’t even remember what we did!)
I have learned what songs go with which exercises to pace them properly w/o having to count and be bored. I sing out loud. Poor folks! I try to sing quietly, but I’M DEAF, so I HAVE NO IDEA HOW LOUD I AM!!! (I’ve advised them to give me the quiet down hand signal if needed, but nobody seems to mind.) Y’day, my sub PT told me I needed to save my oxygen for exercises. Was that a polite way of saying, “SHUT UP!!” ??? She’d already put me in a hallway away from everybody! LOL!
Pedaling, as I said, IS MY FRIEND. But do you have any idea how BORING it is to pedal for 12 minutes?!?! Not for this crazy lady! I use it as my prayer time. I actually pray out loud for the facility, the staff, the patients, etc, then my family (my SIL fell and broke her shoulder and nose the day I had surgery!!!!) , pastors, missionaries, rescues, water wells, etc. and today, one of the PT staff that I’ve never worked with came and sat in front on my pedaler as I prayed. She stayed there the whole time, as if my prayers were healing balm to her. GOD IS DOING AMAZING THINGS HERE!!!
And of course, I sing! Scripture songs from the 80’s CFNI and Melendez Bible Study! Some hymns. I’ve never had a great voice, but I sing tenor (cuz it’s more fun to sing w/the guys!) and harmonize well. Since I’m deaf now, all music is JUST IN MY HEAD AND HEART, but IT’S THERE!!!!!!
And of course, there are some songs that touch me more than others.
REDEEMED: I can see Marie Jackson, the lady who taught me almost everything I know about polyticks and spreadsheets, my BEST FRIEND for 40+ years, who went HOME Jan ’24, sitting at the piano, enraptured in the song, BEAMING up at me as she sings, “REDEEMED! REDEEMED! REDEEMED BY THE BLOOD OF THE LAMB!”
AS A DEER: My college bestie, Shelly Sue Smith Morales, the most kind, non-judgmental, compassionate, POWERFUL WARRIOR WOMAN I’ve ever known, EMBODIED THAT SONG!!! Her whole life was WORSHIP IN SERVICE!!! She went HOME Cinco de Mayo ’23. (Yes, this week has been milestone week!) She and I wrote a second verse to AS A DEER, and as I sing it, I lose it every time! My PT Natalie was worried that I was crying at the end of the exercise, concerned that I was in pain. NOT AT ALL, JUST GLORYING IN THE GREAT PRIVILEGE OF HAVING BEEN SHELLY’S FRIEND!!
Most of my tears these days are happy, grateful tears! Sooooo many have poured sooooo MUCH into my life, IT’S OVERWHELMING!!!
2nd verse we wrote (1st verse is Ps 42: 1-2)
“You’re my Friend and You Are My Brother, even thought YOU ARE A KING!
I want you more than any other, so much more than anything!
I was born JUST TO WORSHIP YOU! TO WORSHIP YOU ALONE!!
NOW I COME INTO YOUR PRESENCE AND I BOW BEFORE YOUR THRONE!”1
And that’s exactly what she’s doing now!!!!
I’ll post a different blog titled SHELLY’S MANTLE that I feel free to share now that I’ve shared w/her precious husband, Joe. There is some repetitively redundant stuff in that, too, but separating medical and spiritual in IMPOSSIBLE!!! Probly cuz GOD IS THE GREAT PHYSICIAN!!!
Starting a new thread is hard, so this till just continue to get longer.
Thurs, May 8th: Gonna post Wed’s update, cuz nothing earthshaking today except 52′ walk and glutes firing HARD! Did 3-30 second marching exercises while sitting. Lifting right foot DIDN’T HAPPEN LAST WEEK! Now, I can lift it a few inches as I march, and have to make myself not kick, cuz that’s cheating!
NATALIE IS TEACHING ME TO PACE MYSELF AND NOT OVERDO SO THAT MY MUSCLE FATIGUE STOPS ME!
Wed PT Update I sent out on text update to folks:
Pedaled 12 min on 2.
Did stand and reach and arm weights.
Did stand and step exercises w/2″ step: TOO EZ! Did 3″ step and made almost all 5 before right foot dragged.
VERY GOOD PT TODAY ALL THREE TIMES!!
MUCH STRONGER!!
Walked 51′, then 42′ after other exercises took their toll.
Beginning to FEEL things I haven’t felt in ages!! Can’t really describe, but tingling in places that have been DEAD for over a year!
Dem DRY BONES COMIN’ BACK TO LIFE!! RESURRECTION POWER!!!
Of course, like anything medical, nerve pain attacks vary from person to person and event to event, depending on the origin of the injury. I’ll try to give you a visual image of my NPA’s.
Imagine a huge pair of vice grips suddenly CRUSHING your tailbone or ischium (for those of you who don’t know where that is or want to look it up, it’s the curve at the bottom of the hip), then a huge syringe full of HOT ACID being shot up your rear, then being forced to sit in a vat of HOT ACID for several minutes!
Sometimes, it’s all of the above. Sometimes, just the crushing. Sometimes, just the syringe full of acid that dissipates after about 30 seconds. Sometimes, combination of two or three of these.
Nothing helps! No Rx. Not ice or heat (tho hot showers feel GREAT!). Joy has started doing a gentle circular lower back massage when they’re so bad I’m doubled over (about half the time), and that seems to relieve some of the pain. It used to HURT for anyone or anything to bump or touch there, but apparently the clot has dissolved enough that it’s no longer tender.
Update on some comments from previous posts:
Morphine pump: My family took me to ER about a month ago cuz I was literally screaming in pain from NPA and locked up arm. TORTURE!!! SEVEN IV sticks: no success, even w/”the best” and doppler! I’m pretty tough and used to that, but twice (one in each arm), they hit the nerve that controls my thumb. Uncontrollable spasms!! BOTH THUMBS ARE NOW NUMB!!!! Hoped it would heal after a few weeks: nope! Jonathan (my EMT son) had to yell at them to STOP when I gritted out, “TAKE IT OUT NOW!!!” and they refused to give up. I will NOT be going back to ER unless I’m having a heart attack or stroke! (or maybe an open fracture!) Since I’m on blood thinners, the risk of stroke is supposed to be alleviated.
One good thing came of that night: they gave me an 8cc morphine shot to ease the pain. (When we were in a wreck in 2006, it took 10cc before the Dr could staple my scalp back onto my skull. “Normal” dose is 5cc.) Guess what that did?! NOTHING!!! Didn’t even make me sleepy!! So the “I need a morphine pump” idea is a bust, as well.
New wheelchair ordered and approved by insurance. Old one was friend’s and wheels worn out and don’t turn properly. So I get a new wheelchair for Christmas. Simple pleasures make this crazy old lady happy!
Luke 2: 1-20 JESUS IS BORN! The “lowly shepherds” were the first to know and worship Him and be evangelists! The angels sang gloriously! Mary stored up all these events in her heart, probably in complete awe!
Sciatica and sudden onset of horrendous nerve pain attacks in my tailbone area turned out to be a “tumor” (assumed cancerous) in my L4-S1 spine. Surgery to remove in early Sept ’23: it was only a blood clot, according to Mayo (Neurosurgeon team at Baylor Scott White sent it off cuz they’d never seen anything like it before!), but nerve damage done by quickly growing clot (that’s why they thot it was cancer. Did you know that the density of normal spinal fluid, cancer, and blood are so close, you can only tell which it is by biopsy?! I did the research, being the crazy medical science girl.) and surgery rendered me numb from waist down. Couldn’t proceed w/biopsy because nerves started misfiring and had to stop before they paralyzed me! I’m not paralyzed, but feet can’t feel the ground unless something SHARP pokes them. (Nerve damage, not classic neuropathy.) Left foot BLUE and cold, but multiple tests show no blood flow issues; just nerve damage. No bowel or bladder control, but honestly, cathing is better than old ladies wetting their pants when they sneeze! Spent hour on phone trying to get prescription for caths renewed cuz urologist my PCP required me to go to has a contract w/an “out of network” provider who was gonna charge me $73 every 3 months! I’m bigger,meaner and uglier than they are! I demanded they send my RX to the company that’s in network that doesn’t cost me a dime! I think I won! Will check back w/in network cath team Monday.
Nerve pain attacks continue: since it’s nerves, UNPREDICTABLE! Sometimes only a few a day, rather mild; lately every 15 minutes, including thruout the nite, and INTENSE!!!! No RX work (just make me dizzy! Just got over that nightmare! NO THANK YOU!!). Tried external Spinal Cord Stimulator enroute to implanted one: MADE THEM WORSE IMMEDIATELY!!!! Nope! MRI showed my scoliosis was so severe that the stenosis left NO ROOM TO INSERT THE ELECTRODE NEEDED for the SCS! Do you know how TINY an electrode is?!?!? My pain management Dr gave up on me! Nothing he can do to help! I laughingly say, “I need a MORPHINE PUMP!!” They actually do those, but insurance only covers it for end-stage cancer patients. Thank you, Jesus, that I don’t have cancer! Mom beat it 4 times and went on to terrorize the world for almost 40 years! She was a FORCE TO BE RECKONED WITH! I AM HER DAUGHTER!!! Oh, and did I tell you that BOTH of my neurosurgeons have left the state?!?!?! I seem to have that effect on Drs! I am “The Problem Child”! (And yes, I know that’s a “negative confession,” but it’s funny and TRUE!!!)
My NPA’s (nerve pain attacks) have become HORRIFIC, and FREQUENT (literally 6 during dinner out for Larry’s birthday tonite!) I grab the table, breath deeply (it helps a little!) and PRAY HEALING VERSES. They only last about 30 seconds, but WOW!!! If somebody tried to torture me, I’D LAUGH AT THEM!!! The past few days, the Lord’s led me to pray for Israel during those attacks. I have, and surprisingly, they’ve become shorter! “Revival! Protection for Your people!” (Remember, I’m in PAIN, so nothing elaborate as I’m trying to BREATH!) Started expanding to Ukraine and USA!!!! We need REVIVAL MORE THAN ANYONE!!
ADD: Rambling! Back to medical
So, for safety’s sake, since the feeling in my legs requires me to literally tell my feet with each step, “PICK UP YOUR FEET,” and balance is still an issue, I’m in a wheelchair most of the time. BUT… sitting for any length of time HURTS!!! (Tailbone nerves irritated!) Sciatica pillow helps somewhat. Bamboo pillow is AWESOME! Sat on that on 4 hours ride to Sugar Land and back last week and DIDN’T HURT!!! Usually, even short jaunts in my beloved truck HURT! Only lying a certain way in my recliner (where I sleep now due to CHF and spinal issues) relieves most of that. But not last nite!!!! Israel got LOTSA PRAYERS last nite! Never slept cuz just as I dozed off, BAM! NPA! Comfort kitties who sleep on my lap didn’t appreciate it!
I’m now totally DEAF (THANKS, LASIX!) w/2 failed CI’s and HA’s that do no good (& cat knocked into trash! Even w/warranty, $750 to replace a device that was in the box and not in my ear cuz IT DIDN’T HELP!!!! No point! ) . I read lips HORRIBLY! The pitch of very few voices is partly audible. (Yes: that’s proper grammar: pitch is; voices is object of preposition!) Can’t understand my hubby at all, nor read his lips w/his beard! We’ve learned to use notes on phone and hit the microphone, although even that is iffy: picks up what it wants, and pitch issues for lower voices as bad as my ears! Carry dry erase board with me to Drs (most of whom refuse to use it! GRRRR!) Texting and email are lifesavers! Caption Call is helpful, but it, too, is iffy: requires GOOD WIFI and is slow on the uptake, so if I don’t tell the caller, “Wait ! I’m deaf and my captions are slow connecting!” they hang up on me! Frustrating when it’s a Dr office that I NEED to talk to! Quite funny what it says you said sometimes! Now I understand why my BIL carefully EDITS his text messages to customers after he dictates them! Bad words that nobody really said!!!! Really funny w/Joy, who texts in Vietnamese, then sends the translation. Some things just aren’t meant to translate!
Deaf and in a wheelchair puts quite a crimp in your social life! Conversations at the dinner table are NON-EXISTENT for me, regardless of efforts. Running errands requires assistance (I can’t load my wheelchair and very few stores have scooters, and somebody still has to retrieve it for me.) Takes 4 hrs to do what used to take 2, then I come home and CRASH!
We rented a scooter for a trip in July: minimally helpful. Had to put together and take apart; just as heavy as the wheelchair; battery not as dependable as you’d like, and slopes no easier. To justify buying one to use all the time, we’d need a tailgate (I drive a truck) lift, which isn’t cheap, sticks out in the parking lot and is a hazard! Being handicapped is a PAIN!
OH!! FUNNY STORY!!! Went to the pool at the awesome HCA Hampton Hotel in Rockport. (We’ve discovered that only Hamptons have HCA rooms w/double queens. Most only have kings, as if Handicapped folks don’t have FAMILIES they travel with!!!!) Saw the chair lift, so I fell in the water, knowing I could use it to get out. I’m a mermaid! Swam for awhile and did water exercises. There was a young man in a wheelchair who climbed up the steps on his hands and knees and made it look easily doable, so I wasn’t worried. When it was time to get out, Joy tried the lift chair: DEAD. No real surprise. I swam to the steps and tried crawling out, but my legs don’t work well! Not only that, the stair’s progression was 3″, 5″, 9″, out! Uh, NO! And the railing was RICKETY!!!! Wiggled all over the place!! I tried several times, and even w/Joy’s help, couldn’t get out. I sent her to get the manager/desk clerk to help me. (Larry was asleep and had had neck surgery, so he wasn’t allowed to lift anything!) . The clerk (smaller than my 165 lbs) tried several times to help me, and we were on the verge of calling the cute young firemen to get me out. I would have been MORTIFIED, since most of them are kids of my classmates!!! (Rockport is my hometown.) Last effort, under the armpits, LIFT as I pushed up, and WE DID IT! Moral of the story: always call ahead and have them CHECK THE POOL LIFT CHAIR before you jump in! They work when installed and get inspected for HCA certification, but no maintenance is done on them, so they don’t keep working! Just for show! If you don’t believe me, visit a few hotels and see for yourself! Broken controllers; chewed wires; missing upholstery. Not pretty! Not helpful! Certainly not HCA compliant!
They say truth is stranger than fiction. My medical saga over the past 8 years has been sci-fi worthy!! And there’s nothing really wrong with me! Just STUPID LITTLE THINGS THAT CHANGED MY LIFE!! My orthopedist said, “You need a body transplant!” Funny, but not very professional or helpful! And that was BEFORE we knew about the “tumor”!
Had bronchitis all week; stayed in bed for 2 days! Finally went to Dr cuz I couldn’t breath and have been told often it’s not the CHF. O2 Sat stays at 96, regardless! Pred shot, breathing treatment, antibiotics, and my hubby got me a nebulizer breathing treatment machine for $32 w/insurance at Sam’s!!!! Better already! Don’t wait to be so SICK you can’t function!!! Go to the Dr! (Tho mine is sick and tired of seeing me!)
It’s 0230 and I’m still up, despite NO SLEEP last nite! Writing does that to me! Hope you’ve been appropriately entertained by my scary saga. No point in going to the Dr/ER/Hospital, cuz NOBODY CAN HELP ME!!! My son’s being saying for years, “We can’t give you the kind of help you need, Mom!” Little did he know how RIGHT he was!
Bless the Lord, O my soul, and ALL THAT IS WITHIN ME BLESS HIS HOLY NAME!! FOR HE HAS DONE GREAT AND MARVELOUS THINGS!!! (paraphrased from Ps 103)
Wynne Loveless Writes 