Seattle Multiple Sclerosis Blog: Learn, Laugh, Live

To those of you first-timers to my blog---WELCOME! I hope you enjoy some of the many posts here about one person's life with MS and all the rest. There are links on the side of 100 Chronic Illness Blogs, some of MY favorite blogs to visit and much more. Under "Labels" you can find many more topics and stories about my crazy and wonderful family, along with some very old photos. My hope is also that you might find something to laugh about and please remember that if you just don't give up, you will surprise the experts and yourself---you are a star, you are the stuff that stars are made of! Follow your dreams, stay in the game, fight for what you believe is the right thing to do.

For my peeps and followers, I am off to work on my book. I feel your support and thank you. Peace and happiness to all of you. You are all so special to me. I wish you good health and much joy, if that is not possible then I wish you the power to live 'till you die! Until we meet again...

Adult Bully=Adult Baby OR Bullies Are Forever

One more thought about bullies: Humans who bully come in all ages, children and adults. As I read many blogs, I read of bullying by family members, co-workers, politicians, company representatives we must deal with, so the "It Gets Better" idea is true for certain types of bullying, but really life is full of bullies. The most important thing to remember is that there are more humans who do NOT bully than there are bullies.

In school, you need to tell an adult whom you trust. When you are gay, it is hard to tell your parents, "I am teased because I am gay." First, a child may not know they are this horrible thing called "gay," and second, they may know that they ARE this gay thing that their parents have taught them is a horrible thing, a sin! THAT kind of bullying does get better, because as you grow up you will find many others who are gay, maybe move to a big city full of gay people.

In adult life, bullies live on. When I moved into a retirement community, I expected mature adults with good manners. What I found was a group of bullies who ran the Bridge game nights. (Again, the majority of residents here are kind and far from bullies.) Now, as an adult, you have the choice to avoid such bullies. But, I wanted to learn to play Bridge. They told lies about me, they made fun of me, they shouted at me, they ganged up against me, but I stuck with it. I kept showing up. I learned to play Bridge in spite of them and I learned to beat them at Bridge. I did not stoop to their childish level. Others who live here had looked up to them as leaders of this community. (They tried to bully me at my first resident council meeting where I presided as president. I took the head bully aside and told her, "No more. Your actions are keeping others from expressing their opinions. Meetings will be run THIS way..." She never interrupted again.
Sometimes bullies just need to be confronted, told that YOU will not be or allow anyone to be bullied. Adult bullies KNOW that they are in the minority.

On the job, I had a bully. She didn't approve of my friends. She didn't approve of my lack of speaking out about issues she felt I should. She didn't approve of my reading materials. (I wasn't anti-men enough for her. I wasn't anti-men at all.) She would stand at my cubicle and trash me to my face. She would try to embarrass me at staff meetings, once brushing dandruff off my shoulder as I was speaking, kid-stuff. Then she actually HIT me as she passed by in our hall at work. I was using a scooter for the MS at the time. Of course, as was her way---no witnesses. But she had been bullying other employees for many years and the hit was the last straw. I began the complaint process through Human Resources, nothing much came of it. So, I wrote to my immediate supervisor and hers that the next time I call the police and press charges. I also wrote to our Director. Finally they began to pass out info about what will happen to you if you do such things as bully a co-worker. Everyone knew it was her, she was THE bully and after about a month she was suspended for bullying someone else. On the job, you must document the bullying, tell your boss, then let it be known that you will take action that will shed a bad light on the company or your boss---adults take the path of least resistance. Remember, EVERYONE has a boss. No, you say? The "Boss" is the owner? Big deal, the boss of the owner are the customers.

So, bullying never ends, we must fight back and show that we refuse to be bullied. Yes, words hurt, but life is never free of pain, word-hurt is a hurt we can conquer by not letting words have power over us. We may bleed, we may scar, but we also heal. Be a bully healer for yourself and others. One bully at a time.

What happened to the bullies? The co-worker retired with no party. The oldest Bridge player is unable to play anymore due to heart failure, those mink stoles she wore to games are now swear pants and sweat shirt. The next woman's Alzheimer took hold, she moved out a week ago. The next told me he is dying and I haven't seen him in over a month. Do I forgive them? I am not a God. I am not a preist with hail Mary's to dispence and none of them give a hoot about forgiveness that I can see. I always felt pity for them, I still do. Bullies are weak people, afraid to be shown for what they are. I am sad for each of them as I have always been. To forgive is the opposite of holding a grudge. I never held a grudge against them. Like I said, I felt sorry for them.

Never have I known a bully to live a happy, strong, life; at least not on the inside. Build your own insides to be happy and strong. Take the path less chosen and hold onto hope, have faith in yourself and the bullies will fade away.

Do you have any additional advice? I think we all have had to deal with a bully or two.

Fallaphobia: What to Do After a Fall

There I am, holding my stand up against school bullying sign. Last year I fell down while transferring from my power chair into that lift-chair in the photo. I fell straight down on my knees and without working nerves in my spine, my body proceeded to fall back on itself. It must be called a miracle that I did not hit my power chair with my head. That was my seventh fall since being diagnosed with multiple sclerosis in 1990. I remember each one.

MS did not make me fall for over a decade after I had it, fifteen years to be exact. It was shocking, unexpected, and my leg just 'gave out.' Still young and tender, as my great-aunt Vi used to say at the age of 95 (she lived to 103), I was never hurt more than bruises and cuts. But falls can hurt you mentally. You can become afraid to fall---fallaphobia. (NOT phallaphobia, that's a different blog, Freud.)

The worst thing you can do is to stop walking or standing out of fear. But, how to forget a fall!?

If you are A Stellarlife blog fan, then you know I am not about forgetting. I believe remembering is crucial to healthy living. It is not like your brain will ever forget by itself anyway. Don't kid yourself, your entire body holds memory cells. As with any bad event, your goal should be to learn from the experience. That is how you empower yourself and own your destiny: education.

A physical therapist can help you understand what caused your body to collapse, and a multitude of situations can cause falls. If you are not under 3 years old or playing a sport, you were built to stay erect when moving. If you can't--see your doctor. I fell because I have MS and my legs are affected. The more you fall, the less you walk, over time your muscles will atrophy. This is common with diseases that cause falls, so finding ways to increase your muscle tone is vital to a long, strong, life.

Right after each fall, I was afraid to fall again. But it passed quickly. Unfortunately, my last fall was the hardest to dismiss because I could not see any way to prevent it from happening again. I had been doing nothing different than I'd ever done, my legs just gave out. I had to accept that It might happen again and get back on my feet.

Start slow. It is okay to start slow when you stand/walk/transfer. In fact, it is probably a smart thing to do. I made sure that I had more support around, kept one hand always on a chair, grab bar, or cane. I ordered an alarm necklace in case I fall when I am alone. A physical therapist made home visits until I felt I gleaned all I could from him. I taped and watch TV info commercials of people walking, dancing, exercising, doing yoga---want my brain to remember what we are going for. I would think about walking and standing each night before I went to sleep. I reminded myself what it was like when MS took my eye sight in 1991. This was better. My bookcase still holds books about falling like a stunt woman. In a nutshell, construct your plan to stand again. Slap on your badge of courage and take those first steps. See? You didn't fall. Take another and another.

Chances are that one day I will fall again. The best I can do is prepare to kiss the floor and show it who's boss. Today I took twelve steps. My steps increase monthly. I can stand longer. With help, even longer. I know I have an uphill climb, but I am unafraid to begin. Beginning is usually the toughest first step, isn't it?

1.) See your doctor to assess why you fell.

2.) Begin a balance and/or muscle strengthening program.

3.) Keep a diary, set goals.

4.) Buy any equipment you need, like grab bars, tub mats, a walker, a cane. Your doctor or PT can prescribe these.

5.) If you live alone, consider an alarm system. Make sure the Better Business Bureau gives the company you choose a good rating. Beware long term contracts.

6.) Play head games. Make those pathways to remind your brain how your body is supposed to stay erect and get back on your feet if you fall. (Falling is easy, getting up unhurt is the hard part.)

7.) Start slow and safe.

8.) Stand. Walk, Transfer.

9.) Celebrate! You now know that a fall need not KEEP you down.

Stand Up Against Bullies

Gandhi and Big Pharma Results for MS Copaxone

This HUGE slick newsletter from Copaxone (I think I asked them to take me OFF their list a decade ago...), why so big? So people with MS can read the print? OK, then why put a quote from Gandhi, " Whatever you do will be insignificant, but it is very important that you do it," followed below by: Individual results may vary.

Fighting to Live with MS and All the Rest 2008 Ends

Big guy jumped up and on top of the wall that separated the wheelchair ramp from a small hillside of bushes and a few trees. He threw his large body back down to get behind my gurney and he began pulling with all his might. Inch by hard earned inch he was pulling me up the ramp. "Joe! Look Out!" shouted his smaller helper who had finally found his way to the top of the steps which led to my apt. building's front door.

I lifted my snow covered head to see a large tree limb had fallen over our path. Behind me, so close, I heard the icicle hit the ramp, missing me by maybe a foot. The sound of ice and limbs falling were like birds chirping, all around us, so frequently that most fell into the background--white noise. Again I was trapped between a wall and a limb place, in a foot of snow, wearing a hospital gown. In a third floor window I caught a glimpse of the black cat who enjoyed sitting there, in her warm apt., watching the goings on outside. Usually, if he she saw me look at her, she would jump away, but not today---the show was too fascinating.

With little hesitation, SuperJoe bent his knees and began pushing the tree limb, grunting, shouting for his helper to HELP him, but the smaller fella was still trying to push through snow and ice with his boots, to clear a path for Joe. Then little guy crawled into the tree area and tried to grab a side of the limb. Together they moved it just far enough up to pull me past. One more flight of stairs and we would be at the entrance! Joe lifted the heavy rear end of the gurney and we all made it to the locked door.

"How do we get it? a huffing Joe asked. My mind went blank. What was my code again? I had no clue. They started pressing any number and finally some kind person buzzed us in. The unheated lobby felt like a summer day in Maui. I was home. The guys brushed snow off me, covered me better with the snowy blanket from their cabulance, shook their boots and we made it the half block to my apt., where my partner was anxiously awaiting.

They lifted me into my lift-chair and off they went. My loving partner had warm clothes and blankets waiting. As I laid back in my chair, I could hear the cabulance wheels spinning in the icy grooves in the street. I'm guessing one of the toughest drives of just blocks that they have had to make.

After I slept, we accessed my situation. My quad cane in position---I was too weak to stand. My partner had called every caregiver company she could find and no one could get to us. One company swore to come, but they never called her back. The student nurse who lived down the hall was on vacation and our body builder, deaf neighbor was vacationing in Hawaii. We were all alone. Depends in place, nothing we could do but wait out the storm until our regular caregiver could make the long drive in.

Living in a chair covered in plastic with paper towels and anything we could find, SHE, my much burdened partner who was dealing with her own illnesses, could gather, for two of the longest days and nights of our life. Luckily we had electricity both days. But as long as we live, we will never forget how horrible those days alone were. My partner and I decided it was long overdue for our move to assisted living. We could no longer care for ourselves or each other without help that would always be with us. Though we had planned for this day, it was bat to ball fast---a pitch we were not expecting so soon.

There were many moments that we considered letting go of our lives, during that Seattle snow storm of 2008. A suicide pact. One like we considered after our return from NYC in 1982. Our life together just beats up on us over and over, year after year...it is an option I think 2008 finally put to rest. If we could survive that, lose both our jobs to illness, find love enough to want more, refuse to let the worst end our story too soon...then we will start over again and probably again. We do ask ourselves, "What fated us to be together and why?"

And each day we answer those questions anew.

MS? Infection? WHO CARES? Back in the Hospital

My new room was MUCH smaller and had a roommate, you know the kind, the ones who like to tell you their life story---never shut up. I never saw the woman's face. After about 15 minutes a nurse brought my Zanaflex to me. Though I was totally shocked and pleased that my spasticity hadn't gone through the roof, I was still concerned about the warning to never "stop taking." And without anyone seeming to give a damn about how whatever "infectious disease" I might have would be affecting my MS, I mean "infections" are one of those complications that can turn MS into an accomplice to murder. Yes, I was on my own again with dealing with my MS, even in a major hospital filled with doctors, pathetic, isn't it?





"Diane? Diane?" I had dozed off and awoken to the sight of at least 6 medical types surrounding my bed. One was taking my blood pressure, "Is the cuff malfunctioning?" He had that frowny look on his face. In front of me was a dude, doctor type, bending over me with his stethoscope.





"Diane, do you know where you are?" (Oh GIMME A BREAK, how can I answer this in the funniest way without being too snarky?) the nice doctor asked.





"Seattle. Swedish Hospital. Do you know where YOU are?" I replied with a smile. The guy with the blood pressure cuff was now hauling a machine to the opposite side of my bed and furiously attaching the cuff. Hmmm





"Do you know who the president is?" That doc was not giving up! Was this a trick question? Should I say Bush or Obama? I gave him a couple sentences about the election.





"What is your name?" (Oh STOP!!! SERIOUSLY?)


"Diane J Standiford. David Ida Adam Nancy Edward John Sam Tom Adam Ida Frank Ocean Robert David!" I raced that off hoping to end this silliness and calm the guy with the blood pressure cuff, and the extra men now entering the room--it was getting rather crowded.





"And who what is MY name?" (OK, here we go. I had never seen this doc before in my life! Good grief.)





"I have no idea."





"I'm Dr. Baxter." (Uh-oh...wait, by golly it WAS DR. Baxter. Too late, they were moving my bed.) I smiled timidly, "Right."





As they rolled me back to my ICU room, I was informed that my blood pressure had dropped to 60/ 70, something horrible like that. Also they could not wake me, and Dr. Baxter said I could no longer take any more Zanaflex. (Noooo!) "But, Dr. Baxter, you have to understand, I have been taking it for years and it does have a sedating effect, I tend to fall asleep, but I always wake up just fine and very alert."





"Diane, I'm afraid the next time you won't wake up at all. Your heart rate and blood pressure should never drop so low. Do you understand?"





Won't wake up at all, I heard that loud and clear. I never took Zanaflex again. Had my once beloved neurologist who dumped his practice in 2004 over-dosed me again, like he did with the Baclofen? My partner had, for years, complained that it was so scary to her how I dozed off and she couldn't wake me, but it lasted a precise amount of time and then I awoke alert as if I had never been asleep. When I missed a dose I became so rigid. Why was I so loose in the hospital going on my fourth day? Questions, but no neurologist to even explore them, and none ever has. They hear all this and move on as if I had said nothing at all. They don't know. Just another MS mystery for them, I guess.





Now I was really getting sick of the hospital and wanted to go home. The infectious doctor was in more often, um-ing and humph-ing, and grunting, saying few words, just looking worried. My partner called daily, had a friend haul her over snow and ice mounds to visit me (only brief visits in ICU) and she kept a cheery face on, but I knew she was scared, the info they were giving her was scary stuff, more than they were telling me, I guess. I wasn't scared. I felt fine and was ready to get home. I pleaded my case to Dr. Baxter, "You have found nothing wrong with me. I've stopped the Zanaflex, all my vital signs are perfect, how much longer can you KEEP me? I have no skin left to take blood from. They can barely get a good vein anymore. I'll get better at home, not here." He said the infectious doctor wouldn't release me. I demanded to speak to him.





He was a frowny type of man anyway, in my opinion. I got him. He couldn't find anything wrong and that bothered him when clearly something WAS wrong. "I just don't want to release you and have you back here in a few days." He wasn't budging.





"Well, I've given the cardiologist, the pulmonary guy, the vascular woman, and you four days and gallons of blood. I'm getting sick from BEING here now. Let me go. You can't keep me forever." He shook his head and walked out.





Next a physical therapist visited. Very sprite young man with a buddy intern, "Hi, Diane!" (ICK) "I'm here to make sure you can walk to the bathroom before we release you!" (sigh)





"So...no one mentioned to you that I have MS and can't walk?" (I told them as soon as I got to ER and they put a catheter in immediately. I was so dehydrated that I still hadn't had a bowel movement, WHICH didn't seem to bother a soul.)





"Uh, no," said PT Dr. Dumbass, oh, that's not nice, I'll call him Dr. TweedleDee, "But you will have to go to a nursing home if you can't walk to the toilet by yourself." (sigh X2)





"Are you FAMILIAR with MS?"





"Somewhat." (SOME WHAT??! SIGH and #$%^&$%^&)





"Well, I haven't walked in years. I use a power chair at home and use grab bars to transfer myself. I would LOVE to see you get me to walk." He was unfazed. "Just try walking to this chair," he said as he pulled a chair from across the room.





GAME ON. "Ok, and if I fall, you will catch me?"





With a laugh he replied, "Oh yes! I would never let you fall." TweedleDum just stood there looking a bit scared.





"OK. Help me up." I reached my hand out to him. He grabbed it and I pulled him, I swear to God, OUT OF HIS SHOES. He came flying towards me and I was afraid for a moment that he would fall and hurt himself. I released him back to his socked feet on the floor and said coolly, "You still think you have the strength to catch me if I start to fall?" His face was red as red Rover and his cohort had stepped way back. I was rolled back to the ICU, but not before having a bowel movement and no one answered my alarm for over 15 minutes. I sat in my own crap for awhile and bad on them. (THAT would happen again three times before I went home. Their excuse was: short handed due to snow')





That night in the ICU a new woman came in with a clip board, she looked doctorish. "Hello, Diane, I'm a physical therapist..." I interrupted with a dramatic Drama 101 flop to my back and deep sigh, ala roll of the eyes. "I know you have not had good luck with a physical therapist here, Dr. TweedleDum is new, I'm very sorry, but I've been doing this for 20 years and I have had many patients with MS." (AH-HA News travels fast.)





I perked up, "So you heard about him telling me I had to walk?" She laughed, "I heard that you pulled him out of his loafers!" I didn't laugh. (But I was rolling in the aisles on the inside!) "I'm here to ask what I can do to help you, just tell me." (ALRIGHT!)





"I need some ROMs." (Would she know what that meant? Range of Motion exercises?)


"Sure," she replied and we did those for 30 minutes. It was wonderful. I never saw her again.





Day 5. Dr. Baxter stopped by and he too had heard about how I pulled the PT out of his shoes. "Can I go home?" He pulled a chair up close to me. "We really can't find anything wrong with you, but Dr. Numbnuts (sorry, my bad, he was an ok guy, just wanted to help me, but I can't recall his name since I never saw him again.) is worried that if we let you go now you will get sick again." I reached out and laid my hand on his arm...tightly, "I understand that, but you must understand that love waits for me at home and I'm not going to get better in here." I looked into his eyes, he looked into mine and said, "Okay, I'll release you. Do you want me to call the cabulance to drive you home?" (WOO HOOOOO!!!) I shouted, "I LOVE you, Dr. Baxter!" and he laughed.





The cabulance arrived 4 hours later than it told me it would. Everyone was talking about how bad the Seattle streets were. Good thing that I lived just blocks from the hospital! My hair was never washed the entire time I was there and I was never bathed. (Those interns and/or nurses were too busy playing Gray's Anatomy!) My sheets were not changed while I was on any single bed. My pillow case was not changed. I did get a flu shot and EKG, two things I had on my TO DO List. I was never given a walker to stand with, laying flat the entire time except to eat. When the hospital doors were opened and my cabulance sat ahead of me---WOW. It looked like a snow/ice bomb had exploded outside.

Very little traffic was moving and all I could see was snow and ice, on trees, cars, people, buildings. All I had on me was the hospital gown and a blanket. Once inside the cabulance (a private pay ambulance service $600 for my 7 or 9 block ride) it was quite a ride. The streets were mostly closed, ice chunks littered the snowy streets, it felt like we were driving over a rock quarry. And we were moving about 3MPH with constant starting and stopping, no traffic lights were working, the snow was still coming down and it took 30 minutes to make it to my apartment building's front entrance. I thought the HARD part was over.

My building was four stories high with two long sets of steps in front and a long, winding, wheelchair ramp. You could not see either. I had to tell the drivers what was under the snow. First they tried carrying the gurney straight up the stairs from the middle of the street where they had parked. Nope. Snow was too deep for them to get any footing and the larger fellow started shouting at the little fellow. This went on for a good five minutes. I was cold under nothing but a blanket that had come off most of me. "Try the ramp!" I shouted, I think we all shouted because the wind was loud. Never had Seattle central seen a snow storm like this, not in many years anyway, not with so much thick ICE. The big guy decided to go for the ramp. He tried to push me by himself, the little guy was trying to forge a foot path towards the front door.

Push as a he could, my gurney was stuck. After all I had been through I had a sinking feeling that I might die right there. I was now mid-ramp, half way to 2nd level when I heard a loud cracking sound. I looked up (my best view) and there above me was a HUGE pointed icicle just ready to come down. The big guy heard and saw too. He pushed and pushed and grunted and shouted moans of pain, but I wasn't budging. Sigh. And, BRRR.

To be continued...