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 