Thursday, July 3, 2014
Wednesday, July 2, 2014
It was 3AM and there I was trapped between my heavy power chair and the ceramic thrown. The poor carer pulled with all his might (I had the bruises to show it, in fact the knee scraping was due to his and the summoned medics trying to lift me up! The medics finally lifted my chair away and two of them got me seated back in my chair,) but I was stuck between too heavy devices. He couldn't release his grip on me to call the medics and my wife (nope, don't care for the sound of that) my spouse was sound asleep.
Finally he laid me down and five firemen arrived. Immediately they went for my wrists and having had them give me radial nerve palsy for 6 months before by "wrist lifting" I quickly took over and shouted how to pick me up.
Within 15 minutes it was all over except bruises and two badly scraped knees. How lucky am I to never break a bone? To never hit me head? VERY LUCKY
Both knees good as new now. MS strikes again! Back to the gym, young lady.
Tuesday, July 1, 2014
I responded sternly in my deepest voice, "Go ahead."
He then told me two stories about himself, his reason for doing such unions, his orphanage work, basically exactly what I needed to hear: this was a man of integrity. An air of integrity is what I wanted surrounding our small apt. wedding ceremony.
Five people is all you need for a wedding: The officiant, a couple wantin' to be hitched, and two witnesses. I made sure to have a spare witness just in case.
My attendees gifts to us would be their time, energy, and effort to make it to our new assisted living home, knowing there would be no food, drinks, music, dancing, and after the "I do" would be a "thanks for coming, now go."
When you are partners who have been denied the legal right to marry for 35 years, both sicker, disabled, no longer the spry young lovers of 22 years old, a quick simple wedding is the greatest gift we could imagine.
I feel very lucky to have lived long enough to experience this day of equality, but must juxtapose that with knowing so many still are denied the freedom.
Thursday, June 12, 2014
Now why couldn't the rest of me followed suit? Ah, life!
Photo is of a "new" MS rubber (I think) bracelett. Since "MS Awareness month is winding down (and plans for my wedding are gearing UP) ---here is my on line contribution.
In fact, when wearing the first red "HOPE" ones n the early 1990s, they did open some conversations about MS.
Wednesday, June 11, 2014
Perhaps a little of both! Made stronger due to MS? What fighter doesn't get stronger after each fight? Who isn't stronger (physically or mentally) after falling down 9 times and getting up 10?
Get your Made Strong t-shirt at www.MadeStrong.org
10% of profits go to Race to Erase MS which funds MS research through Center Without Walls.
(They also sell very cool wristbands!)
Monday, June 9, 2014
I just LOVE living here!
Saturday, June 7, 2014
. Feeling frustrated, angry, confused. In less than a month I will be marrying my partner of thirty-five years -- the love of my life. We are counting down to our anniversary date (the day we originally pledged ourselves) to make it official -- now that we can -- in our state. Our first ‘date’ commenced in a hospital where I was under observation for a new heart med. You see, in our early years I threatened her with the diseases and conditions I was already struggling with and those I figured I might contract along the way. I was right: in the years we’ve been together I’ve racked up 12 more diagnoses plus surgeries and hospital stays. But these seem paltry complaints compared to her dx of MS after a decade into our life together (the ovarian cancer was impressive, too). As it is wont to do, the MS progressed from relapsing/remitting to chronic progressive and we were forced into ‘disability retirement’ and a retirement home
in 2008. After that home was sold, it began discontinuing its services and marketing its apts to young professionals instead of elderly disabled (I understand it has now forced all but 3 of its residents out) we began looking for and found what we thought was the ideal place -- in a neighborhood we fondly remembered from an earlier life there, within walking/rolling distance to shops, markets, groceries, drugstores, parks; a dedicated team of university students assigned to aid with partner’s transfers. Her legs, knees have been brutalized, yes, brutalized, not just from the ravages of MS weakness and spasticity but by various PTs ruining them with accidental collisions, falls, and ill-fitting devices. So, after initial home care horror stories, and five years in the retirement home with help we could never be sure of, we rejoiced when these aids assured us, “Pivot transfers? No problem, we do those all the time.” We did see not only frail and
elderly folks but also some with visible disabilities. We believed. After we signed the (many) papers and executed that stressful, exhausting endeavor even for the healthiest -- moving, we discovered that these caregivers used a kind of straight-on muscle and heave approach to transfers, not the “standing pivot transfer’ technique we’ve understood is part of every certified nursing assistant’s training. In our first few days here partner was dropped on the edge of her chair at least three times, from where she would have slid (without functioning core and quad muscles) into a fall had I not come barging in, grasping her knees and giving fight to gravity to get her back into her chair (in some of these instances there were two aides both holding on to her arms or shoulders (another no no) while the lower weak and numb part of her body slid ever closer to the floor). Oh…. frustrated, I am, Yoda. You may recall that I am not well, either--with a
retinue of immune system troubles, injuries, plus osteoporosis, I am not the best choice to play hero with pain signals running wild, balance askew, and general ill health, but I could not stand by and watch yet another promise to keep her safe fail, this time at thousands per mo. (Believe it.) I am angry because once again, they are asking her, my partner, the PATIENT, to train their aids. With each ‘training’ transfer, she becomes weaker, more spastic (“She’s like dead weight” one complained, while trying to dead lift her off her chair. In a standing pivot transfer, one aids the patient to stand, once they are standing they pivot with you and you can use your leg-based momentum to place them in chair.) If they keep dead-lifting her their backs will start to go out on them. Do we ask so much? Well, does she? She works so hard to keep in shape--lifting arm weights, modified crunches, and hoped to use the spanking new gym downstairs to
continue. But she has MS ya’ll, chronic progressive MS. Utube is full of standing pivot transfer vids, but they want her to ‘train’. I’m seeing it wear her down, and I don’t want it to wear her out. She has already trained more than 8 aids here, who now have the technique down, but at what cost. What about HER therapy? Her ‘training’? I am worthless, can barely take care of myself. Every time they bring a ‘new’ aid up and I’m crossing my fingers (well, sort of) I break down in fear of her falling and breaking something important this time (medics already tried lifting her---LIFTING her---with wrists and gave her radial nerve palsy on her good arm. That was a six month recovery we don’t want again). I am losing it again. She needs a better WC, how to accomplish when we can barely get properly delivered to dining room for a meal? Maybe just a bad day… Right now they’ve left her with no one to transfer her for a 3 hr block. That
means no water, no food, no movement, god forbid or she may have to use the toilet and back where we started. Pray, if u pray, pray for us. I am so tired.
By-Karenlee Kitto June 7th, 2014
Friday, June 6, 2014
When all was said,checked as noted in previous post, the gym at my new home is what sealed the deal for me.
With more modern equipment than in many big-name franchise exercise clubs, this is, I believe, my last chance to get stronger and healthier in my fight against (and embracing of) multiple sclerosis.
Wednesday, June 4, 2014
Here are some things to look for in an assisted living home:
Is it certified by the state it is in? If not posted front and center, ask to see it.
Don't EVER let the person ready to sign you aboard intimidate or rush you. In fact, make them wait. THEY should call YOU back. YOU ARE THE CUSTOMER---PERIOD.
Read all their home rules. ASK QUESTIONS.
Look for a manager who ENCOURAGES you to ask questions.
SMELL the place, top floor to bottom. Is it clean? Are there cobwebs?
Look for lights out, unpainted wall scrapes, worn carpet.
Eat a meal or three there. Is the menu clean? Variety of choices? Healthy options?
Watch the dining room staff---are they in clean uniforms? Talk to them.
Find out how long the current manager has been there.
Talk to residents: Do they seem happy? Aware? Fit?
This is your starter list.
Monday, June 2, 2014
I made it! My new assisted living home is spectacular. Of course, you get what you pay for, but as one senior said who was sitting in my new and LARGE bistro, "It is expensive here, but it is worth it."
So, I will beg, borrow, and try to win the lottery to stay here as long as I can.
The previous home was all I could afford at the time. It went through a new manager every year, a new chef ever 3-6 months, the entire staff came and went much too quickly for any stability of service. It became a disaster.
While I became close to some of the residents here, many were, well, disgusting. Not their fault, but they could,on any given day leave a trail of vomit, urine, or solid waste, that would go uncleaned by any staff.
Poor management leads to unhappy staff who take a "whatever" attitude. One maintenance couple left and according to sources, took many of our holiday decorations. The place just became sad. It seemed clear to me that the owner was ready to wipe his hands of the building (which sits on prime real estate) and that was my signal to look elsewhere.
Seattle stole my heart many years ago. My partner of almost 35 years (yes, the world finally changed and we will marry by month's end) and I have lived in many of the diverse neighborhoods here. The one we spent the last 5 years in is not my favorite.
For one thing the place our home was located was so isolated. No where to GO to. You will see in previous posts that I rode my power chair down busy street (in bike lane) because the sidewalks were so rough, and still closest hang out was one Starbuck's. I felt trapped.
Our favorite neighborhood was downtown, but we can't afford that. Next was "Ballard," where we once owned a small condo. When we sold it we said, "One day when we are older, we will return." (The majority of population was over 70 at the time.)
We have returned. We are not as old as we imagined, but I'm guessing the majority here is MUCH younger, because the Yuppies discovered Ballard. A new Google building is just blocks away and expensive condos sprung up like weeds during the 22 years we were gone.
Ballard has changed but the part we loved remains---small town feel, small businesses, LOTS within just a block. WE ARE FREE!!
Tuesday, April 1, 2014
Well, my "New Life" posts come to an end. I will move by end of May to new home and have new stories to tell.
I am so stressed out right now, not knowing what awaits me at new home, arranging the move, doing my taxes---ugh.
I'll get back to my blog when life slows down.
Take care, all my visitors!
Monday, March 31, 2014
My birthday is today. I am 57 years old.
On my birthday I like to reminisce about past birthdays, but I could only remember 3 of them until this morning. My 33rd birthday was wonderful. I was settling into a great job in a city I loved. My apartment was large with a great view. It was located two blocks from the Ballard Locks in Seattle, Washington. My partner hadn't been rushed to a hospital in many months. We loved walking to breakfast at a neighborhood restaurant, then over to the Locks, which connected boats from fresh water lakes to the salty waves of Puget Sound.
There was a marina there, full of sail boats ready to hit the water, and inside a government owned botanical garden park full of tress and flowers from around the world was a salmon "fish ladder" which allowed the salmon to make the return home to mate. It was just a magical, wonderfully relaxing place to sit and breathe fresh air, delicious scents of the most gorgeous flowers, and to people watch.
Life was good, so good, almost perfect for me.
My loving partner of 11 years gifted me with something I'd wanted for a long time: a yellow Schwinn 10-speed bicycle! So many terrific areas to ride in my neighborhood, heck, I could ride to work! It was an exciting time. I was 33 and feeling great.
The first place I rode the bike to was the Locks. It was a clear day, sunny, just perfect, but something was not right with me. Had I forgotten how to ride a bike?! They say you never forget. Maybe the bike was not calibrated correctly...it seemed to move...off kilter.
Just to be safe, I rode home on the large sidewalk. This was a popular area for bikers, but few would be on the sidewalk. There was another 10-speed coming my way though, but we had PLENTY of room---I rode directly into him.
"Hey!" He shouted, as he struggled to stay on the bike. He did, and glared at me as he passed by.
I stopped, almost falling myself, and was dumbfounded. I actually turned into him!
One month and 15 days later I would be diagnosed with multiple sclerosis (MS.) I never rode the bike again, or any bike again. My balance was off and I couldn't even sense it.
Yes, MS made my 33rd birthday very memorable, once I remembered it. I can see why my brain chose to forget that day.
Sunday, March 30, 2014
My SPMS (secondary progressive MS) was going along pretty fine until the last 12 months.
First I was DX with Bell's Palsy on my 'good side'--my right side. It really stopped my walking accomplishments pronto. I had been on a roll, making it across my living room floor. My standing time was increasing by the week! Then BOOM.
After the Bell's Palsy, I caught a bad cold, then (and who didn't see this coming, what with my T-cells working overtime!?) I had a MS relapse attack---my first in a decade, or longer, I honestly lost track.
My right side started going all numb, my right hand was not interested in functioning at all. It was hard to eat or drink since the nerve connections were so confused by now. Good Golly Miss Molly!
Things have settled down, a 3-day dose of Solumedrol calmed the inflammation down, but all those months I had to have caregivers help me move, stand, until now my muscles are DYING to start back and go all atrophy on me! DRAT!
Each day I am starting over again, back to working what I can. My plan still is a solid one and I see now that it needs to be constantly practiced, I guess for the rest of my life. And why not? It is not a bad way to live---keep using what works and build around weak or compromised body functions.
It all goes back to babies, crawl until you can hold onto something and stand, then start walking, fall, get back up, rinse, repeat. Life.
After 5 years post MS diagnosis (DX), I was diagnosed with ovarian cancer---two surgeries later, started over again after laying in bed for weeks. It is always nice knowing you can work to improve SOMETHING. Whether it is eating healthier, visiting with friends, petting your dog, SOMETHING can be done to improve your body and mind.
But, mixing other illnesses with MS is a real Putin buster. Sometimes starting from scratch is not the worst thing. I have added peanuts to my diet and met new friends on Face Book.
Saturday, March 29, 2014
It is all so ridiculous, really. I was diagnosed with MS in 1990 and I find no better "awareness" of this chronic disease than there was almost 25 years ago.
Oh, there are more books about it, more blogs, more people on social media sites who tell their stories, but enter the average person's life and "Is that Jerry's Kids disease?"
My assisted living home has ONE other person with MS. And what I am about to write is based on what I have read from 1,000 Face Book 'friends,' Twitter MSers, doctors, nurses, physical therapists, cab drivers, grocery clerks, authors with many letters (PHD, BS, etc) behind their names, and family members---still so many laughable ideas about what MS is.
It makes me so sad for those who do indeed suffer from MS. Yes, suffer, many of us suffer. While I once fought to get "disabled" instead of "handicapped" into our lexicon, so many people with disabilities decided they didn't want the label of being disabled, well, I give up and so has America.
"Handicapped" is the most used word and I don't have a problem with it. Nobody labels me anyway. Only YOU can allow yourself to be boxed or labeled. But, I swear some people don't want to say they have MS.
Worse than that is the many who diagnose themselves with HAVING MS! Why a person would want to do that is beyond me. They have a pain or numb foot, Google it and VOILA--MS! I guess, or some doctor Googles it.
AWARENESS? What a joke! We are not even aware if we HAVE multiple sclerosis!
I hear this so often it makes me want to throw up: "I have progressive MS." Then they go about telling of their latest walk or trip by plane to Disneyland, oh, and if I DARE inquire when they were diagnosed (DX) they refuse to answer or say 10 years ago. NO NO NO
There are stages of initial DX of MS, the rarest is primary progressive MS. And if you get that DX you will not be on a plane for a fun trip any time soon. In fact, you will likely be dead in a few years. There will be no blog from someone with PPMS. (The exception is if you were misdiagnosed to start.)
What people MEAN to say is they have progressive MS, well, DUH, THAT is the most COMMON form of the disease. Most of us will progress towards disability, some faster than others, but that is the disease you have. AWARENESS? So many people with MS don't even understand the different stages of the disease.
The "Walk for MS" always cracks me up. Yeah, I did one in the first years when I could still walk that far. I walked for AIDS. I LOVED to run and walk. Now I need a power chair. But all these walks sure make people think that walking with MS is totally doable and let's combine the two to raise money! "BOWL FOR MS"
How about some real awareness of how this disease destroys lives? Do you think maybe people might want to give money to help end suffering? The photos from the "Awareness" Walks show happy, smiling, laughing people--PARTY TIME!
The biggest advancement in MS is diagnosing earlier, ergo, healthier people who will experience longer remissions, still walk and run for miles and they will attribute their good health with some diet or exercise or their POSITIVE ATTITUDE! sigh
Sigh, because that was me in the 1990s. Today I would have been diagnosed at age 10 or 25. At 25 I had all the text book symptoms, but I hated doctors and forged ahead until I got over whatever was bothering me. (I thought I had a brain tumor, but my partner was ill at the time and, well, priorities.) It wasn't until age 33 that I was DX MS.
Anyhoo, good luck finding a healthy person who can tell you what MS is. Good luck finding someone with MS who is aware of the history of their disease from 1975--2014.
Saturday, March 22, 2014
Thursday, March 20, 2014
Must my life be daily fights?
Sunday, March 16, 2014
One of the new assisted living homes I am looking at requires a form for their care employees. It asks basically if I have any dementia, food requirements, and so on. It is the kind of form I have been given where I currently reside (over 5 years now!) but I just toss them away. (You would too if you were me and lived HERE, but that is another story.)
Instead, I took the form to my MS doctor and she looked up at me while completing it, "You should not drink alcohol."
"What?" I noticed a question about whether or not I could drink. Now, I never have had more than one glass of white wine at "Salty's on Alki" during an anniversary dinner over-looking Elliot Bay. This fact turns normal faces into shrines of unbelievability.
"People with MS shouldn't drink." (My brain shouted, THANKS FOR TELLING ME AFTER 24 YEARS)
Laughing, I said, "It's funny because I don't drink and have never smoked pot," she interrupted--
"ME EITHER!" We laughed as I continued, "But Happy Hour is a big deal at these retirement home places." (Can you HEAR me, Doc? I will be ostracized if I am unable to imbibe AND now the carers will see your form answer as, "Watch out, she drinks.")
Now that I have been told I shouldn't drink---I want to drink. Since childhood, that is how I roll.
Must Google a good beverage. Happy Hour is at four.
Saturday, March 8, 2014
Yes, head trauma can cause, or at least trigger multiple sclerosis. I was surprised that some of my blog readers did not know that. Here is a link to many scholarly articles regarding the MS connection with head trauma, and you can Google the issue for hundreds more.
While just about everything "MS" remains a mystery, and we all probably 'got' it our own unique way, I have NO DOUBT that when a pick-up truck hit me, MS joined my life forever.
I was 10 years old, riding my bright red bike to a park near my home, pulled out of a gas station driveway, looked both ways down my small town Indiana street, flat and clear of cars, next thing I knew three teenage boys who had been sitting on a Goodwill dumpster yelled out, "STOP, you hit her!" I also saw a pick-up truck with ladders on side come to a halt, its back lights red. But I NEVER saw it before, nor did the boys see the actual collision, NOR did the gas station man right there see anything but the aftermath. Strange, right?
My head was stitched up. I was sent home. I never cried, actually enjoyed the cop car ride to hospital a block away. I vividly recall the painter (he looked sooo sad), the gas station man who approached me as I picked my bike up and started walking it home, "Where are you going?" (He had already called cops.) " Home." "I think you better come sit down for a minute."
So, yeah, I was in shock and out of it from impact until cops arrived---about 5-10 minutes?
Anyway, that spot on my head, dead center, was always a tender spot for me. I couldn't stand to have it touched until I was in my twenties.
When I was sent to have a MRI (my family doc noticed neurological symptoms, sent across street to a neuro and a 'traveling MRI' just happened to be in town, Seattle 1990--yep, back then MRI machines were few and far between. This one was in a mobile trailer ready to roll on its way.) the largest lesion was the size of my palm and located EXACTLY where I had been stitched up in 1967.
About a 15 years later I had a home health care lady over and she said, "Oh, yes, I see the scar."
WHAT?!! A part of me thought I might have made it up. Thank you dear older brothers for your continuing torments accusing me of lying, exaggerating, yep, to this day I hear my oldest brother's voice accusing me.
I had to see it. I had to believe. I grabbed a mirror. There it was and there it will always be. My MS scar.
After the pick-up accident, I started having symptoms on and off, but as a kid, I had no words for what was happening.
My reading and math abilities slowed down. I still aced all my tests so what could I say? I saw stars in gym class when we did tumbling, anytime pressure was on my head--"She just wants out of gym!" Even a doctor said that to my mom, right in front of me...what could I say? Only Aunt Violet believed me. She always took my side in this.
One day I was walking home from school, I must have been 11, my leg would not pick up. I stood, unable to move, on the sidewalk. I thought to myself, "Remember this. This means something." After about 5 minutes it lifted again. I never told a soul until I was in my mid-thirties, after my MS DX at age 33.
Most MSers, recall certain moments of MS after they get an official DX. But, mine are so exactly related to that head trauma...I have NO DOUBT.
I think it was 2000 that was touted to be "The Decade of The Brain," with promises of massive research and discoveries. Uh-huh.
Friday, March 7, 2014
I was trying to count my falls yesterday, or I should say falls that had an impact of the big-stage variety on my life. Shocking.
The first was around 1959, Christmas Eve to be exact. There was the big party at my Great-Aunt Vi's house and my mom just HAD to go downstairs for her cigarettes. I hated it when she smoked. I begged her not to go. She went, and so did a relative's dog, tripping my mom in the process and so began my history with falls.
Mom dislocated her shoulder. An adult sat me up on the kitchen counter in full view of my fallen mom, crying in pain. She was taken to a hospital.
I had opened a gift of a snow globe and perched myself next to the large house's front window, watching for Mom to return and turning the snow globe over and over. I remember there was a small brown plastic deer inside...I kept turning and staring...until she came home.
A few years later Aunt Vi bought me a stuffed 101 Dalmations puppy, "Don't run with it," she said as I darted out of her car, so anxious to show it off. To this day I SWEAR I was not running, but I tripped on sidewalk, and forehead met cement. The adults were so upset. They put me up on an ironing board (wait for it) and ran a large kitchen knife blade over it. Never made sense to me, but in later years I learned it was the coolness of the flat blade that helped the swelling go down.
Around age 9 I fell on my knee, scrapping it on sidewalk (wait for it) (nope, that's it.)
Age 10 was epic head to curb fall off my bike when a pick-up hit me. Luckily, hospital was half a block away. I am CERTAIN that one triggered my multiple scelrosis. The year was 1967. I was diagnosed with MS in 1990, after having symptoms for 23 years.
Age 11 my mom wanted to see some Indiana dam, I wanted to stop at a park to eat our picnic lunch first, so I stayed in a huff in our car. On Mom's walk back, she tripped, dislocating her shoulder AGAIN. We were in the middle of nowhere, luckily a ranger station was nearby and ranger drove us to hospital. Mom made an ambulance drive us all the way home because she was afraid of leaving her 11 year old little girl alone in a strange town. I saw her fall, but pretended I didn't---that bad behavior haunts me.
Age 47 I was up early to prepare for my visit to a disability exam in downtown Seattle. It was about 6AM, I turned to place breakfast on kitchen counter and right knee gave out---my first multiple sclerosis fall. (But, actually I blame an undiagnosed damaged knee from a twist during a basketball game in 1990. It would remain undiagnosed until 2012. "It's just MS." ( DON'T EVER ACCEPT THAT WITHOUT QUESTION.)
Four falls (each time knee gave out) would follow, each attached to a call to 9-1-1.
Somehow I have not yet broken any bones---OH! I just remembered a fall! I was stationed as a security guard at a PBX switchboard in the main entrance to Bethlehem Steel in Seattle, about 1985. My headset on, I leaned back an the entire chair broke in two. My body flew off backwards onto floor, glasses went flying, pants tore apart. I had the ugliest but most multi-colored butt bruise you'd never want too see.
When I fall, I tend to go straight own. When my partner falls, she flies.
Once she tripped (flew) out of our studio apartment in 1982. There were many seizure and endometriosis pain induced falls over the years. In 2002, she tripped over a fan cooling our den, hit the wall and broke her wrist. Luckily, she had an arm-load of laundry so her landing otherwise was soft.
So, I suppose the fall that caused my MS was most devastating, but that first one...I remember turning the snow globe over and over and over.