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...

When MS Went to the Hospital ICU, Zanaflex, Burgers and Orange Sherbet

My Ms was cruising along, not great but not horrible. Then in 2008, Dec., I started noticing my Frosted Flakes didn't taste right. A box of cereal was always within my reach and I would write on my laptop from 7PM until 3AM. At the time I had been taking Zanaflex for my MS spasticity, every three hours for over 5 years.


My neuro who prescribed the Zanaflex had dumped his practice in 2004. The Zanafles certainly stopped my rigidity, but it also sedated me. Before I retired from my job, I actually fell dead asleep in the middle of talking with a customer on the phone, only to awake an hour later, hearing, "Hello? Hello?" My original customer had long ago hung up and who knows how many had passed through, hearing only dead air? I had to stop the job. It was the final straw and I didn't want to go out a failure---I wanted to go out on top. I sought out a new neuro who had made a research paper on treating spasticity. She sent me home with her paper and "Chose which drug you would like to try."





I chose Valium, my memories of The Valley of the Dolls aside, because it was around the longest and had fewest side effects. When I told the Dr. what I chose and why, I also spoke of my fear of addiction, to which she replied, stone-faced, "Addiction is just a behaviour."





My usual come back failed me, I was so shocked by such a stupid response. (I began looking for a NEW neuro soon after.) She prescribed 5mg/every 3 hours, along with the Zanaflex. You do the math. My partner, who had been worried about my "sedation" after taking one Zanaflex, noticed my ability to stand was getting worse. I lowered how often I took the Valium, it just made me way too weak.





Dec. 16th, 2008, my heart began racing. It felt like it was going to explode out of my chest. My partner, who has dealt with heart malfunctions most of her life, said, "Don't worry. I get that all the time." But, I did worry. It just seemed WRONG, like that "immediate post injection site reaction" of what feels like a heart attack that Copazone gives the lucky 10% of users. (Me)





Dec. 17th, I couldn't eat anything and was afraid to take my Zanaflex...too naseous feeling. Didn't take it for 2 days and became rigid in my limbs, couldn't get my hands out of fists. It began snowing in Seattle and my caregiver was struggling to drive in, she finally made it after having to park and walk a mile. That day I couldn't even drink water and finally vomited something ungodly looking. But, it did look like there might be blood in it. I had just posted on my blog that I NEVER vomit, jinx done, lesson learned. I called my new neuro, who agreed with the previous neuros crazy high dose Valuim (I stopped taking that much after a few months), but she was "busy" and I was told she would return my call. I said, "This is an emergency." No matter, she never called back. I called my general practioner, "Well, it is either something very serious or just a bug. But you should go to the Emergency Room."





On Dec. 18, 2008, an ambulance was called. They lifted me from my lift-chair and off to the ER, about 9 blocks away, I went, my vomit in a small tupperware container. The first Dr. I saw was a heart guy, they immediately hooked me up to monitoring machines and were very concerned that I was in tachycardia. (me too) He had them stop my heart and restart it, before I could say, "Huh?" With the defibrillator at my side, he had them start IV fluids, the make nurse dropped the needle on the floor (there were about 6 people all around me now, things were happening all at once and very fast), picked it up and stuck it in a vein. DID I JUST SEE THAT?? A nurse standing by said to him, "Did you just drop that needle on the floor?" and he said as he moved away, "It's okay." Then the Dr. had them stop and start my heart again. He still couldn't get it to beat normally. He said, "When going to inject you with xxxxxx(I couldn't make out the long medical word), you may feel very bad, like you are dying (HUH???) but it only lasts a few seconds. And in it went and yes it was the worst feeling I can imagine having, not pain just, well, like you are shutting off, no return, like a thick blanket of death has just smothered every cell in your body, then it was over. I hope that is NOT what dying is like.

It seemed to slow my racing heart though and he told me he would have more tests done. He looked like Santa Claus, but better beard, closer shave and he wore a nice jacket. Before they rolled me away, he looked at my vomit and said, "This is not blood, I take it you don't want the container back?" "No, sir, it is your special treat." He laughed and I never saw him again.

Next I was rolled on the gurney to get a CT, the male nurse (aide, whatever) injected me with something, I said, "What did you just inject into me?" "Oh, it's just a contrast so we can get a good picture of your heart." (Oh, swell, you mean that contrast I have refused over years of MRIs? (Thanks for asking if I might be allergic to it.) "Next time, please ask me before you inject me, ok?" "Sorry, sure I promise I will." I never saw him again.

After the CT scan showed that my heart was fine, they gave me an MRI of my heart and lungs. All done by different techs in different rooms. Next I was off to the ICU Intensive Care Unit. I was in there for several hours, being poked, jabbed, and prodded, no questions asked, before I realized I was in the IC freakin' U!! They gave me IV meds, antibiotics and anti-vomiting drugs, connected me to some kinds of compression machines that wrapped around my legs and arms. In the beginning I was thinking, "What a nice hospital, such large rooms!" Yeah, Diane, you are in the ICU! A huge MRI that moved over me was moved into the room along with various other machines and at least one person ever 30 minutes came in to draw blood, take blood pressure, push on me, X-ray me, all different people.

And no, or yes, they POKE you with a needle every time they draw blood. (EVERY MINUTES FOR THREE DAYS)

I entered the ER about 4PM, at 11PM things started slowing down. I felt better too. I felt good actually. Outside the biggest snow storm in Seattle's history was taking place. The room's window was behind me, so I never saw it, but I sure heard about it. The nurses station was right outside my door, not a door so much as a wall of window panels that slide open. There was a blind, but it was not closed. One small light was left on in my room, but the hallway in front was my entertainment. With God as my witness, it was LIVE Gray's Anatomy. No doctors, but nurses, maybe aides or interns, flirting, laughing, talking about being stuck overnight because of snow, trying to order pizza, and sneaking in/out of a linen closet in my line of view.

Every 30 minutes someone came in and took my blood. Every 30 minutes someone came in and took my blood pressure. Sleep was out of the question. I was concerned about getting my Zanaflex---I was always told never to just stop. They said they would contact my neuro. They could NEVER reach my neuro, in fact, I never SAW a neuro the entire time I was there. Several, SEVERAL aides ( I HOPE they were not nurses, oh, one told me she was!) did not know what multiple sclerosis was. Yes, my readers, this was in big city Seattle, in one of the biggest hospitals here. Finally, after my protests that I was getting very rigid, they got the ok from a Dr. sent by my General Practitioner to IV some other meds into me that were like Valium. (Only days later did I find out that never happened at all!)

So it went for 3 days and nights, I finally saw a DR. from the clinic my GP is at, he was an infectious disease doctor and he always frowned, always. He frowned when he spoke to me, he frowned when he read reports, he was not happy with the data he was seeing. I now felt great and was ready to get back home! My partner started calling after the first day. I had little to tell her, and I certainly didn't mention anything bad like the dropped needle and...stuff, but the desk was telling her more than *I* knew. They were very worried about me. Something was very wrong, but what. I think they were waiting for me to flatline or seize or have a heart attack. Instead I learned to order food.

I ordered hamburgers, french fries, orange sherbet---it was food HEAVEN and I could order 24/7, all the treats I would NEVER eat at home! YEA! Meanwhile the 'crew' of Gray's Anatomy were bitching up a storm about having nothing to eat...seriously? Finally they got a schmuck to WALK through the many inches of snow to bring pizzas. "How are you doing tonight?" asked the duty nurse.

"Fine. This is fun in here. It's like watching a stage play of Gray's Anatomy, with all the sex talk and people going in and out of that linen closet!" That night my blinds were closed , along with the door, but my dog ears still heard plenty---fools!

Finally Dr. Baxter (can't remember his real name) arrived, apologizing for not being able to make it in sooner. (what a nice guy) He was the surrogate for my MD who was clear across town, though they looked and acted alike, and he filled me in. The infectious disease doc was very concerned that they couldn't figure out what was wrong with me. Dr. Baxter was too and I would be moved to a regular room but they had to watch me more. He had no note of my being given anything for spasticity. WOW! I was actually thrilled to think I could feel so loose without any drugs! But...how? Sure would have been nice to talk to a neuro. (7 months later my neuro had no CLUE I was ever IN the hospital, even though it is HER hospital and she was able to print out my entire visit in two minutes that day---I started searching for a new neuro after that, WORST DOCTOR EVER)

Ok, it gets better, but my finger needs a break, so, to be continued...

Boomer in Retirement Community. What a Trip, Man!

Read a funny page in "Time" by Joel Stein about moving into a retirement community. He is afraid it will be full of all the pot-smoking baby boomers he can't stand NOW, why would he want to see tie-dyed tees every day?

Funny how those in their 50s see retirement communities. I LIVE in one and I've got the inside scoop. We had a pin-wearing hippie couple here, unmarried of course and just like in real life (yep, real life ha-ha) they were on the outs. But, Stein's idea that Lawrence Welk music is playing in the halls here is just silly. The people here average age 85 and are into CURRENT EVENTS. They want to discuss current issues that they are unaware of and "The Big Bang Theory" is a fave TV show with my table mate who is in his late 80s. (A fave of mine too.)

What I found to be the most influential factor is status, just like in school. What college did you attend? How can you make me look important? Do you have money? Same stuff that forms cliches in real life. What Stein dismisses is health issues. THAT is what bonds us together. If we could live on our own, we all would. Live in our own homes, that is a common conversation---what it used to be like in our homes before we came here. (Hint: BETTER)

That is true for me too, but it was made NOT better because of my illness. A healthy person who is 100 will chose their own house any day over a gated retirement community. Unless they are lonely, depressed, and that is a form of illness, isn't it? Well, if you think living around your peers is the answer, maybe, but only maybe. Not every peer is a friend in the waiting. And the truly wealthy stay at home with hired 24/7 care, just as many poor do, but the 24/7 care is family. (Who often get all of that social security check. Will we ever go back to actually living with our sick and/or aging family members just because it is the right thing to do? Nah.)

My next book, after the one I'm working on, will have to tell my story of life here, now, so young, only 55---not what I expected and yet, foolish of me to think otherwise. The drama, the mental games, the class captains and clowns, same stuff from school. Falling in love like a 16 year old, sneaking kisses on elevators, drinking, and baking pot brownies---they do it all.

I have always liked the greatest generation; my own generation---not so much, so I am not looking forward to the baby boomer arrivals except that our food menu will improve greatly. Most will be living until they die in their own homes. "Retirement Communities" will be a thing of the past. Without a cure for my MS, I will probably be in a nursing home by then. Nursing homes will still be around. Ugh.

This greatest generation knew what it was like to come out on the other side. They benefited from the housing boom. They survived the daily threat of being bombed HERE in the U.S.A.
And, of course, they survived us, their kids. Somehow that makes them know the importance of laughter and fun. This has made me look at my own great-aunt Vi in a different light.

She always called herself, "A gray-haired old maid." But, she was only 55 when I was 5. And that day that meant so much to me, when she played tennis with me in the snow---she was only 63. We FORCED her to stop driving before she was 70!! It seemed the right thing to do since she had eye surgery. But she complained up to the last time I spoke with her that she never should have stopped. And now I agree! Well, not in her 70s.

If 50 is the new 30 it is because of how WE saw our elders. Aunt Vi just keeps teaching me lessons, year after year.

MS WORD OF THE DAY: SPASTICITY

Spasticity means stiffness to the extreme of being rigid and rock-like. If you have multiple sclerosis it is caused by a dysfunction in your central nervous system (in your brain, spinal cord, and/or nerves).

It will make your legs unable to bend or move. It can also affect your arms in same fashion.

Drugs, exercises, may help, but nothing cures MS spasticity.

It is one of the most common symptoms of MS.

Grey's Anatomy Izzy Back with Heigl Baby, All My Children

It is just darn sad when a stupid TV show ya love starts to die. I made fun of soap opera fans of All My Children when that show was halted. Now, I feel like I am watching the slow death of my favorite TV show, Grey's Anatomy.

Izzy, played by Katherine Heigl, left her husband, Alex, to dwindle into a sorry bag of "boring story line." Alex is played by Justin Chambers. (that's him at front in photo above) I saw Chambers in something on TV recently that was about 20 years old and he looked JUST THE SAME! He is a talented actor, paid his dues, and he deserves a good script---he deserves Izzy back. They never made sense together, but they were drawn to each other from the start--much like many real-life relationships.

Now, the main characters, Meredith and Derek finally got the baby they wanted to adopt. In real life, Katherine Heigl has her adopted Korean baby girl. Heigl's real sister is an adopted Korean and Heigl says she wanted her own children to mirror the family she grew up in. Shooting movies is hard on raising kids. A TV show like Grey's that has a daycare for Ellen Pompeo's mixed race baby is a perfect fit. And here is a big reason I love Grey's---so many races, gay people, all mixed together without a big deal made about it. THIS is where our world is headed and I LOVE it.

Watching TV shows from the '60s, well, it just didn't exist. GAY people didn't exist back then. Adoption was still spoken of in whispers! So, here is my idea: Izzy comes back and she either has an adopted baby or she and Alex adopt one. Alex has gotten so into children this past season, that needs to proceed somewhere.

This show started with a bang (including a TERRIFIC theme song--BRING THAT BACK) and should respect its viewers by going out with a bang. It can still take home some Emmys if Shonda Rhimes, the head writer and creator of Grey's, pulls it together.

Yeah, I'm wasting time on a TV show, but somebody just royally pissed me off about his comment regarding my MS...sooo, it would have made a post that would have really made YOU folks mad too and I am trying to not do that today.

Old People are Not Stupid, But When They Insult?

Somebody just asked me, "Does your blog turn words into sign language for deaf people?" (You can't make this up.)

AND, last week a guy was spouting off in dining room about how power chairs are Medicare scams, "...they just don't want to exercise."

Sigh, so much I could have said...these people are old, but I have know MANY "old" people and old does NOT equal STUPID.

Should I have chewed them out? Should I have responded calmly? I just ignored and kept eating, wasn't in the fighting mood. But...can't get it out of my mind.

Grey's Anatomy Needs Heigl, Izzy and Alex to Get Together

Katherine Heigl has told the 'ladies of' " The "View" that she would go back to Grey's Anatomy if asked.

Three days ago a friend stopped by and asked if I had heard the rumor that Izzy was returning to Mercy Grace. So, it seems the line has been wormed and now we GA lovers must wait and see if the show's writers will write Izzy back into our life and Alex's.

The show has been floundering ever since the characters of George and Izzy left. George died. But, Izzy just left and if the writers want to keep this show alive and off life support, then BRING IZZY BACK!

SERIOUSLY!

Fighting About Graham Crackers and Lasting Love Advice

Okay, so now that I have been in a happy relationship (one vote away from a possible marriage) for almost 33 years, I feel I can thrust some "happy married couple" wisdom, and/or anecdotes on others. I thought some of you might be curious about what we fight, IE, argue about.

Last night it was graham crackers. I requested a graham cracker cookie (I see the irony here, clearly they are not cookies, but to me they will always be cookies.) with peanut butter on one side and cream cheese on the other. Simple, no? (glad you agree with me so far)

The questions came back, "One or two?" I replied, a bit startled since why would I have two? I never have had two in 32 years! (uh-oh, lost my sentence...) "What? One. Why would you ask that?" (Ok, right there. Mistake. Never ask a partner why they ask something. Duh---because they want to KNOW. My bad.)

"Sometimes you want a quarter." (WTF? A quarter? Maybe she didn't hear me. I better start over and speak slower.) (EEERK! WRONG! Never repeat something slower, it comes off as condescending. My bad.)

"I want one cracker, tear in two, cream cheese on one side, peanut butter on other. Then, you know, put them together. What do you mean a QUARTER?" (Uh-oh, she is now stomping into the living room.)

Holding up a cookie, er, cracker, she says in her "you are in trouble, sister"--voice: "This is the cracker and it is in fours. You see?" (such a condescending voice)

"Well, yeah, if you hold it like that! Don't you see the middle line? So, you think it is eighths!?"

I'll stop here, it sounds silly now. But if you hold a Honey Made graham cracker, and look at it, you will see the pattern and one full length cookie is two together. Anyway, the fight went on for what seemed forever, at least fifteen minutes. Neither of us care much for math, 1/8s and so on, so it was very unpleasant. And yes, it eventually made us laugh hysterically, as our fights usually do.

We have an unspoken rule: We never fight in public. Never.

Maybe that is our 'secret' to lasting relationships---we are lovers and laughers, not fighters.

The Dog World of a Child Without Friends

While I have mentioned before my imaginary friends and the whole Ken, Barbie, G.I. Joe love triangle dealy, all the great past times of kids without peers, I have never told you about my dog world. The time has come.

No trite admittal, nay, this is an insight into my childhood mind---a reflective journey I enjoy taking, unfortunately, whenever I attempt to explain it to others I can barely get three sentences in before breaking out in gut wrench, side busting, tear flowing laughter. Perhaps that is a flaw of some nature in me, but I crack myself up. In fact, I often wake myself or my partner in the night with my own laughter, while sound asleep. Okay, onward---the dogs.

They were about an inch high, plastic, single color, indented where fur belonged. A German Shepard (they had no names, which seems odd now...) who was very handsome and strong, fearless and always prepared to do battle. He was decent. He was a great defender of those less fortunate, like the small wiener dog, er, I mean, Dachshund. Whenever the Bulldog tried to bully the Dachshund, there was Shep (I just made that name up) to save him.

Aunt Violet bought me a new dog or two almost every time we visited the store that sold these small plastic dogs, all of which came in cute, small, boxes. I had an entire city of dogs.

The yellow Lab was quite a handsome dog, a lover not a fighter, though the bulldog never messed with Wiener in Lab's presence. Shep and Lab hung out, just talking about life and all was well in town until SHE came. The Collie. With beautiful, flowing blond head of hair, well, Shep and Lab were immediately interested. For all his bravado, Shep was a bit shy of the females. In fact, he and Poodle rarely spoke. Poodle wanted Shep bad, but Lab would have done, but he never paid her the slightest attention. When Collie came to town---all Heck broke lose.

Collie seemed to favor Lab. They liked to take walks together and both wanted puppies one day. Something must have snapped in Shep, because he started getting very passive-aggressive towards Lab. One day Shep saw Collie kiss Lab, their noses nudging again and again.

An anger grew in Shep. He began knocking Wiener over when they would pass. He tried to pick a fight with the St. Bernard. Shep even barked quite roughly to Terrier, for no reason at all. Finally he could stand himself no longer. He was in love with Collie and she would be his.

Lab was just sleeping when Shep attacked and Lab was hurt so bad that he had to be carried by St. B to the hospital. It was touch and go, no one knew who would do such a thing to easy-going Lab and Collie was in tears. She had fallen deeply in love with Lab. He just COULDN'T die now!

"You did it, I know you did, " Terrier said to Shep. Shep growled at him, but Terrier did not back down. "The truth will come out and Collie will NEVER want you now." Shep stepped back.

He knew it was true, plus, Lab had been his best friend. How could he ever make things right again? He sought out Boxer. Boxer was wise, he had served in the war, traveled the world.
"I am ashamed of you, Shep," Boxer said in a deep voice worn by age and too many beers with cigars, "the dogs respected you. You were our leader. What if we are attacked by the wolves now? Will they follow you into battle? You tried to kill your best friend over a COLLIE! "

Lab came too after a few days. Collie was by his side to lick his wounds back to health.

Well, there you have it. The story went on for years. Eventually Lab and Collie were married and had 5 puppies. Shep and Poodle tied the collar. The dogs beat off an attack by the wolves.

Is it strange that I remember their lives in such detail? (more detail than I can tell with laughing to death) Hmmmm

Chatty Cathy Where Did You Go? Told I'm Old

Sitting here thinking about how old I am.

This must be what old people do. That's right, I said it. You think not? Check it out:

My body is decomposing before my eyes. There is starting to be more of me all around me than of me. Huh? My skin is coming off, little by little, hour by hour. My hair falls out and leaves bald spots. My eyes seep. My ears are spitting out some ear stuff. I use the toilet more, so my insides are leaving too. And the noises.

My body makes noises of an old bicycle. It creaks, it cracks, and it lets out these SIGHS whenever I sit or stand or reach or ___. S I G H OOMMPF UHHH

My face is growing things, stuff---bumps, patches, hair where I don't need hair.

And I want to start drinking hard liquor. I have the urge to do stuff I never did before. Tick tock, tick tock. The sands of time are running out, instead of me running on the sands.

My mail is from AARP, Medicare, Adult diaper salesmen. My magazine rack holds AARP Mag, The Guide to Medicare, The Vermont Country Store, and Adult diaper catalogs.

Not only do I not know who Snookie is, I don't care. Justin Timberlake looks like a little boy. Gunsmoke reruns are a staple and I keep saying, "Oh, darn, it's a repeat." ('cause it says "repeat" on the TV guide--DUH)

What? You are experiencing the same things? Come with me. For me, color TV was once an impossibility. Thirty minute 'TV Dinners' was Jetson FAST. And soooo delicious.

Chatty Cathy was 'high tech,' and a man on the moon was sci-fi. You stuck your hand in a candy jar in a store and no one thought a thing about it. There were no helmets or seat belts, unless you were in a tank. Sonic booms were a big thrill. HUGE.

Newspapers were a must have. Even poor people had them. And we didn't throw them away after reading. SO MUCH they were used for, especially wrapping food and if you ran out of toilet paper.

Every family had family in the war or just out. A WORLD WAR.

My favorite game was the Sears catalog. Close eyes, next player turns to a page, you must blindly let your finger drop on...A BRA!!! Many laughs!! OR, a puppy! YEA! Jackpot.

We didn't have Google, we had a thing called "Library." And our search engine was in the basement---boxes of old papers. No "cut and paste" it was "tear and hammer." OR, we relied heavily on a wonderful must-have: THE PENCIL.

Anyway...I'm just sitting here thinking about how old I am and why the skin UNDER my knees is wrinkling...

Solving Your Multiple Sclerosis Problems

Of course there will be many problems that I can't cover in a short blog post, but I'll tackle a few that I read repeatedly on line.


"I just got my diagnosis of MS. Is that Jerry's Kid?" Seriously, I just read that recently. Now, over twenty years ago, I thought the same thing when I heard "MS." Just goes to show you the power of TV and disease awareness. How about that Montel hosting a marathon? I digress.


The problem here is with doctors who do not know enough about MS. If your doctor, and I hope your doctor who tells you that it is MS is a neurologist, does not offer enough information that you wonder about Jerry Lewis, you need a better doctor. You should leave the office with written documents explaining all about MS. (Especially if you go alone. Your mind may go blank after hearing you don't have a brain tumor--YAY--or hearing you have a disease with no cure.)

"How do I know when what I feel is a relapse or just a passing fancy?" This was very difficult for me. I had waited a few years longer than I should have to see a doctor about my foot drop, eye stars, numb body parts, blah blah; so, I was used to significant strange body malfunctions happening and then just going back to normal. Maybe I sat in the hot bath water too long. That can cause a pseudo-exacerbation. How do I know??



Simple solution: you deal with what might be causing your symptom and see if it goes away. Get out of the bath, splash cold water, take aspirin to lower your body temperature. Many of my symptoms in the beginning years were closely led or followed by the common cold symptoms. If dealing with the underlying condition does not resolve your issue---get thee to your doctor.


Unfortunately, it is not always so simple. Don't take this on by yourself. This is why God made doctors who specialize in MS. Call, email (My Dr., in the early years, emailed long before others began the practice and now I think fewer do so. Our loss., and it seems a growing trend to is let "MS Specialists" usually a nurse, drug company flunky,health care aide, or social worker handle all the worries of MS Newbies) or visit your doctor's office and let them figure it out. Truth be told, only a MRI keeping close tabs on you, could really say for sure. But I say---what does it matter?!


Anytime your body is not operating as it should, you must respond to it. I discovered that waiting a few days, or even a week, doesn't seem to matter. So, time will answer your question. I don't like them calling any acting up of MS "pseudo" because that implies fake or unimportant. WE know it is neither. If it is still an issue after a week, you are having a relapse. I am not a doctor, so YOUR doctor may have his/her own time frame---but the old "take two aspirin and call me in the morning" and "...if you make it through the night," well, notice how the common element is TIME. Some things are just not able to be judged without time. Get used to it. TIME is a huge part of everything MS-related. Patience is a virtue you must cultivate if you have MS.





"Should I tell my boss at my job?" There is a certain 'Don't Ask, Don't Tell' when it comes to illnesses like MS (ones that can lead to disability and the ADA, Americans with Disabilities Act). That decision must be all yours, but I told everyone I knew. Why? Because MS is better handled with friends and family to back you up, lift you up in spirit and sometimes body. My co-workers were fantastic and you can't ask for ADA protection if you don't let your job know that you have a disease like MS. If you ever need to apply for Social Security Disability Insurance (SSDI), there will be a form with a question about how you WERE compared to how you ARE. The sooner your job sees how you WERE in the beginning, the better they can compare how you now can not do your job. Oh, I hear some of you---I thought just like you: I am NOT, I CAN NOT lose my job! Yep, and thanks to the ADA I was able to work full time with MS for over fifteen years. YOU may never have to quit your job. Remember the 50/50 deal---50% of people who have MS will never need a wheelchair and they will lead very normal lives. Hooray! Your boss will think you are terrific, strong and the best thing since hot dog buns. And if you DO become too disabled to work, then you have started your documentation early. Hooray!



"No one will want to date me now!" Are you not watching Glee? Viva La Difference---being not normal is IN right now. Meredith Vieira (host of Today Show, The View, Millionaire, and originally a damn fine journalist) went on the first date with her husband of many years and he said within the first hour, "I have MS." She didn't care. That is the kind of person you want. Life is short. Take the leap. Meet people at MS support groups, the grocery, coffee shops, DOCTOR WAITING ROOMS---put yourself out there. dating has never been for the weak. Just never give up. I see 90-year olds hitting on people all the time, ok, I live in a retirement/assisted living home, but you get my point.

"My life is not what I want!" Uh-hem, SPOILER ALERT---few lives are what we planned. That is what makes them so precious. You should be thanking your lucky stars that you are alive. Life is a gift. Keep reminding yourself of that. Hang posters, cut out inspiration quotes, GET CONNECTED. Face Book is FULL of people with MS and all their many inspirational comments, photos---you name it. What a change from when I was DXed in 1990. Make a list of what you want to do with your life. Put on your Gumby and be flexible. There is NOTHING you can't do, just know that you may need to do it differently than you imagined.

Okay, follow my suggestions and maybe some of your problems can be solved. Look, you only get one life. EVERYBODY will have obstacles and unpleasantness tossed in their path. And you may have noticed that my solutions are true for many of life's bumps, twists, and turns. You are not alone. (Keep reading and searching on line for MS advice, tips, funny stories, blogs, hospitals, research centers, journals, articles, you have much to learn---I know I do!)

To conclude: Find a quality doctor.
Improve your overall health habits.
Be patient.
Don't go it alone.
Never give up on love.
Never give up on you.
Bend, but don't break.
Carry inspiration in your pocket.

In the words of Helen Keller, "Life is either a daring adventure or nothing."

Multiple Sclerosis: The Perfect Crime

There it sits in a dusty cardboard box, "MS." No dates, because no one is certain when the crime against so many people began.

Deaths, suffering, suicides, all somehow related to MS. But who done it? How? Why?

Many theories, but all the detectives are stumped, after one hundred years still stumped.

When new clues arise, off go the detectives, trying their best to enlist those on the inside. Cells, veins, gray matter, white matter, what it matter? Leads always end up back to same question: Who done it?

Suspects are plentiful. They are questioned over many years, but to no avail. Some are jailed, but released when new technologies prove them innocent. Perhaps there is a gang, working together to accomplish all the attacks. The authorities spread out their search across the world...still---case open.

Who? Why? When? Where? How? Still baffling us all. Still can't be stopped. The perfect crime.

Golden Globes Big Secret Seattle Reverses Aging

Just when I think I've heard everything, which is of course, impossible, unless I lose my hearing, I happen along this: "Advertorial."


An "advertorial" is an advertisement in the written like an editorial. The term "advertorial" is a portmanteau of "advertisement" and "editorial." Yes, I guessed so, but had to look it up. Lo and Behold, it has been a word in Webster's since 1946. Oh, and a "portmanteau," well, like smog---smoke and fog morphed together. See, sounds freaky to imagine smoke all around our outdoors, smog sounds doable.

An advertorial is apparently "making the news in Seattle." (Why they picked Seattle, I haven't a clue. Probably in Boston, it is "making the news in Boston.") Seems a woman of 52 has found the secret to look 27 in a few weeks. There she is, before and after.

Ok, first of all, if I looked that wrinkled at 52 I would be seeing a doctor. Ridiculous. I look like the after and I'm 55. Second, don't say she is from Seattle. Nobody in Seattle looks like that at 52. Our mist, clean air, fresh foods, plentiful fish, Hot Yoga and sushi bars---wrong city to pick.
Maybe if she just moved here from Las Vegas, only living in a desert could wrinkle anyone up that much, plus lots of cigarette smoking, and too much food from the free casino buffets. Not Seattle.

Third, there are few women who look as wrinkled as the after photo at 27. And why 27? Does 26 or 28 look vastly different from 27? Insane.

Insane and yet I read it. I was curious. Oh yes, hurry, there is a "free" trial of some sort to sign up for. Those behind this product will no doubt make millions. Seriously, ethics in our world are so smothered that they are all but smead. Advertising is still full of silies. And suckerabies are still born every minute.

Case in point: I thought the Golden Globes were live and all winners a big secret, unlike the big fat commercial People's Choice Awards. Well, they slipped last night. At one of the last commercial breaks the announcer says, "...watch history be made in comedy..." (something to that effect) I said, "Hey, NYU film grad partner (something to that effect) , did you hear that?!! He just gave away the winner! It will be "The Artist," first French film...I bet, MY GAWD. They just TOLD the winner!!" (NYU grad didn't hear the announcer.) Indeed it was The Artist that won "Best Picture, Comedy." DOH!

Now I will always wonder how advertorial the Golden Globes show is.

***Smead=smothered plus dead
***Silies=silly plus lies
***Suckerabies=sucker plus babies

Love Song to Make Baby By, But Not To Live By

My father left my mother the day I was born. (Even though he had a mistress for at least 3 years before, since his daughter with her was 2 years older than I.) I wondered what song was #1 during my conception. Here it is by Elvis, how ironic.




"Love me tender,
love me sweet,
never let me go.
You have made my life complete,
and I love you so.

Love me tender,
love me true,
all my dreams fulfill.
For my darlin' I love you,
and I always will.

Love me tender,
love me long,
take me to your heart.
For it's there that I belong,
and we'll never part.

Love me tender,
love me true,
all my dreams fulfill.
For my darlin' I love you,
and I always will.

Love me tender,
love me dear,
tell me you are mine.
I'll be yours through all the years,
till the end of time.

Love me tender,
love me true,
all my dreams fulfill.
For my darlin' I love you,
and I always will.

(When at last my dreams come true
Darling this I know
Happiness will follow you
Everywhere you go). '

How Your Heart Can Change Your Mind: Gay Marriage In Seattle

After 32 years, I am afraid to hope. A roof top patio has been offered. I'm considering Skyping in our ceremony to a minister, maybe allowing a bunch of friends to Skype in...a new age. Maybe a live band...I know people and this IS Seattle. Oh dear, wedding planning stress is already pressing me. Partner got GREAT news yesterday about her recent health problem. Another story of mine is going to be published. Life is good; somebody pinch me.


Washington state's Governor Chris Gregoire announced that she not only supports gay and lesbians to marry, but will also propose legislation to legalize it.

She explains:

"It's right here [points to heart] that frees me up to do this. I have not liked where I've been for seven years. I have sorted it out in my head and in my heart. I have been on my own journey. I will admit that. It has been a battle for me with my religion. I have always been uncomfortable with the position that I have taken publicly. And then I came to realize the religions can decide what they want to do but it is not OK for the state to discriminate. When someone asks me about my marriage to Mike, I don't tell them I have a contract with legal rights. I don't even think about that. What I say is I love my husband. I'm in a 36-year committed relationship. … That's what marriage really means to human beings. They (gays and lesbians) have to have the same ability to say it's love, it's commitment, it's partnership, it's responsibility. It's not a contract. They want to be able to stand in front of their friends and express their love just like Mike and I did 36-plus years ago. To deny that equality is just wrong."

And My 2012 MS Journey Begins with ...

Okay, I meant to post that last post today, end of the year positive send off and all. Now THIS happened. (fake frowny face)

This morning at 6:15AM, I walked (with my walker) three steps out and three steps back. I am over the moon!

Seriously, I don't "do it up" on New Years Eve, when I was younger, twenties, but no more. Always thought that was just the natural way of things, until I moved into a retirement home with a community of 70-103 year olds. Now THEY like to party! I'll have to take a photo of the recycle bin FULL of booze bottles. (Is wine booze? I don't drink.) My Aunt Violet, who lived to 103, used to have a shot of whiskey every night. I used to call my mom and Aunt Vi at midnight every year after I moved away from home. Now...eh. Maybe each year was always too full of some health crisis. In Jan. my partner begins anew her breast tumor journey. I guess I am in no hurry for all that. But, today I got a gift. I walked sturdy and strong.

During this week I also believe I may have found a publisher for a short story about my move into this retirement community. Very exciting stuff. Really, I am feeling over the moon! This is how one should feel on New Years Eve---full of hope and wanting to celebrate the wonderful possibilities that lie ahead.

While I am not into resolutions, I will share with you my big goals for 2012: Finish my book. Walk more and more. Stay strong through whatever health crisis arrive. Bring more friends over to visit. Re-elect Obama.

This will keep me very busy. I apologize now if I don't pay enough attention to my blog or yours. Believe me, I will be thinking of all of you. And I thank all of you who have supported me along my day's journeys. Peace and remember: NEVER GIVE UP.

Find Happiness with Chronic Illness and Disability

Chronic illness, disability---powerful words that few use. Since I have a MS blog and a "Chronic Illness 100 List," I tend to read and use these words a lot. Believe, more than I ever dreamed I would.

By the end of our life's journey (and a shout-out to modern medical science, er, did anyone ever mention that quality might be more important than quantity?) most of us will use these words.

Perhaps it is just verbiage, just garbage, to describe the downs of life. Life is full of ups and downs. As I like to say, such is life. And while it is human nature to want to be happy, our instincts tell us that we must be well, not ill, to be happy. Perhaps. I am just too impatient for the rainbow to show me a pot of gold. I will be happy NOW.

How do we do that with illness lighting the way to a bleak outcome? First we must realize the final outcome fore everyone, man, woman, and animal alike, is death. Clearly you and I are not dead yet, so it appears we some time left to search for happiness and find it. Simple? Difficult? Only you can answer that. I choose happiness. Though I fight my fears, which are many, it just seems life without happiness is as worthless as a Newt Gingrich nickle.

See? That made me happy. Laughter makes me feel happy. I like to laugh at this crazy life-thing and I like to laugh at myself. Once I signed up for a stand-up comedy course. My cane joke flopped like a pissed off trout on the hook. NEXT.

"Next." Now that is one great word. It shows there is always something out there to try on your chosen happiness path. "I TOLD you I was sick." We have seen that on tombstones. Somebody got the last laugh. I love it.

There are so MANY healthy people out there. Some of the saddest people I know. Now, I do NOT believe "when you have your health you have everything," biggest lie on the planet, but it certainly can make a quest for happiness easier.

My hope is that this blog and my stories herein, have given you a laugh or two along the way. That thought makes me happy. NEXT!

MEN: Secret Revealed to the Woman QUESTION

Yes, I said "win." You men know what I am talking about. (LGTBs can take note too.)

It is all about THE QUESTION, and your answer: "Do I look fat?"

Now, this may be slipped into another conversation, in the hope that it will be 'missed' for what it is. Women may also attempt to camouflage it with, "Do I look fat in this?" Or, the real time bomb, "Do I look like I'm gaining weight?"

The correct answer is NO. Always NO. Not sometimes, but always "no." And DO NOT hesitate, not for a second. Practice this if you have found the woman you want to spend the rest of your life with. It may be shot at you from close range or far away, so never let your guard down when you hear the question. Even after 30 years of marriage, one day...when you least expect it...BAM!

The incorrect response can never be taken back. And after you screw it up, there is no getting out. No matter if you had ear wax build up and missed the moment, no matter if she is as thin as the day you met her, no matter if you have gained much more weight than she has---NOTHING WILL MATTER. Logic and rational observations will go unheard. Don't try to explain that women were built to gain weight as time goes by. Don't bring up Venus or Raphael or how "during the 1600s" JUST DON'T. You have entered the zone of illogical. You have been femaly-busted.

Should you fail be swept into the, "But, you MUST tell me. You are my spouse, my best friend, who else can I ask!? Please, please, I WANT to know." Should you not follow my advice and order a dozen red roses the next day, then you see all is well again. Remember the theme music from Jaws? Da dum. Da dum. Da Dum DaDumDaDumDaDum---it WILL come out of the water again when you least expect it.

Just say, "no." Smooth, glance at her and say 'no' within the same second.


(If she is pregnant, it is okay to acknowledge her body changes, but only with many hugs and kisses.)

I Don't Like Holidays

I just realized I don't like holidays much. I prefer the routine of day to day action.

Day After Christmas, Merry Men Beware

Now Christmas Day is over. This is what we call our "Ahhh Day."

All the stuff from the holiday is put away. Our tree comes down (our tradition, calm down, it goes UP early in Nov. )

When else is the word "merry" used as much as on Christmas? I am merried out. How merry can one blogger be!? I am happy to be alive, that is good enough for me.

Our favorite gifts are received and let the play begin! CALENDARS! We both love to plan and organize. The movie of choice is "Rise," something about monkeys, ala, Planet of the Apes.

Ahhh...the big day is over. So quiet outside, so peaceful.

Ahhh

Christmas Eve Magic, Movies, Laughter, Memories

So the Eve is upon us. Nothing says Christmas Eve life a good holiday movie. Tonight we shall watch "Prancer." If you have never seen it, you should. If you have kids, they will love it. If you get all woozy over hunka-hunka men, you'll love it. Sam Elliott's voice rivals them all. No, we're not poor! We have apples! Apple pie, apple jam, apple bread, angrier and angrier with each clip of an apple branch from his tree. Classic story about the magic of Christmas.

Or you can go old school with "It's a Wonderful Life." Whenever you feel down about yourself, when you have done your best and come up short---watch this movie.

I have had many years of family Christmas Eve's, ones that can NEVER be matched, for that I am very grateful. No matter where life takes me or I take it, those Christmas Eve's will never leave me. Good job, Mom; Well Done, Aunt Vi.

Christmas Eve: Magical, Exciting, Family, Friends, Joy, Laughter

We all can use more of all that!

Finding the Meaning and Seeking Happiness

We had a 'flu bug' or something akin to that at in my retirement community abode this month. It is pretty much gone now, but when you are in your 90s, the effects can last long.

My term as president of the resident council here is over Jan.1; I am not unhappy. It was a good run and I enjoyed it very much, but it was a great responsibility and I'm ready to concentrate on my writing.

Last month a magazine bought one of my blog posts about MS. This was a surprise and quite humbling. I expected it to appear in the Jan. issue, but it was in the Dec. issue, so I didn't really get a chance to give it the proper promotion. The editor says there may be a next time, so I will be on the ball then. While I have been often, over the years, contacted by drug companies and medical devices to allow them to advertise on my blog, I have turned that down and will continue to do so. Big Pharma and I are not friends, in fact I told off one rep.big time, he said, "I read your blog often and..." so I had to counter that if he had IN FACT done so he would KNOW I would have no interest in his money for my blog space. I am very experienced in saying, "Go to Hell," in a nice way. (I must have some Southern Belle in me.)

Writing about MS has become a responsibility. But, I am, as they say, torn between two lovers, my blog and my book. Anything published before the book, is good for my street cred, so I must begin my balancing act. If my finger holds up, well, we shall see.

Christmas is a responsibility, the holidays, whichever you celebrate or if you celebrate none---a responsibility if taken seriously. Rip away the decorations, the symbols, the credit card debt, the greeting cards, the food, and somewhere in there is the true meaning (as Linus would tell you), which we all must find and emphasize. THAT is the goal of a happy holiday---finding its purpose, filling your life with its meaning and intent.

Reflection is more important to me than celebration. When crowds are cheering the end of a war, I am reflecting. There is responsibility in reflection, one must question, seek truth, act on the path ahead.

Many dicker about which holiday to speak of, which holiday will be theirs, exactly how others should act---I am a practicing inclusionist, and that is the greatest balancing act around. But have I something better to do? Am I so important that I can't take the time required to seek such balance? My answer is no. In fact, I believe it is my mission as a human being. We are a world of many different minds, thoughts, beliefs and I wouldn't want it any other way.

My wish is that everyone would slow down, seek truth, enjoy the journey with others, and in so doing will find where happiness lives. Then, proceed there as best you can.

Rite of Passage Santa Photos

Here are photos of my partner with her older sister, and me for the absolutely necessary "photo with Santa." As you can see, neither of us gave a hoot's hoot about Santa.

Since neither of us have any other such photos, we can only presume this fulfilled our parent's desires.

My fancy attire makes me think that my great-aunt Violet was behind the Santa connection. That Ft. Wayne Santa was a hometown favorite. He was on the job for many years. My partner's looks like a Detroit auto worker looking for a few extra bucks. My Santa sat on a throne, hers...not so much. Plus, her pic looks like a quickie, no coats even removed. She remembers trying to walk away, Santa grabbing her tightly by the arm.

Neither of us feared those Santa's, just found them boring.

In future years I would stand far away and peer at my peers on Santa's lap. I just didn't get it. Of course my ornery older brothers blew away the Santa myth when I was very young, so it all was such a huge adult conspiracy that my mind could not wrap around. "Don't lie." Yet, there the grown-ups were, lie after lie. Flying deer, fat men down thin chimneys, etc., etc., but the baby JESUS---not that was the truth? I spent a lot of Christmas time looking at grown-ups and wondering if they were not from UFOs. (Which ALL agreed existed!)

Santa Claus, your North Pole digs,

Your flying deer, your many wigs,

How dare you put me on your lap?

What I WANT is to be done with this crap.

Ho Ho Ho

Gifts: Cry, Laugh, Tis The Season

Above is a photo of a Christmas gift I gave to a friend. "Tired Old Ass Salts." Useful, yet whimsical, it mad for a good laugh in my retirement community!

Gifts are often just a potshot, you hit and sometimes you miss. When I was not yet 5 years old, Santa (my mom, older brothers blow such fibs pretty quickly and with great pleasure), left a HUGE box for me. What on earth could be inside? My mom seemed more excited about than I was, must be good!

I opened it up, needed mom's help in pulling it out, YAAAAAAA!! I started screaming bloody murder. I was terrified at what I could only describe as a witch! Frightening hair sticking straight up! My brothers started laughing, always fast to take pleasure in my fear, and mom had the most upset look on her face.

"Look," she began as she pulled IT out, "it's a dog! And see, you can comb its hair."

With tears rolling down my shaking face, all I could think was, "That is NO dog *I* have ever seen!" and "COMB IT? I can't even see any eyes! Where would I begin?!" It was meant to be a shaggy sheepdog with long brown hair, fun for a child to comb. Thus would begin my (according to the laughter and dismay that I know this post will bring from my partner) apparently difficult nature to buy a gift for that I don't think: What the Hell were they thinking?

Again, no point in my showing examples, gifts are all about the thought and all are given, well, 99% are, with the intent to please me...I'll leave it at that. The shaggy dog is not a good example because in that case it was all about the presentation. Once I found they eyes, it was fun to comb him.

My poor partner, so often she hears, "Have you EVER in ___years SEEN me wearing___?" I'm sure I am particularly hard on gift-givers because I consider myself especially adept at giving good gifts, presentation et al. No one will deny that. Aunt Vi taught me about finding the perfect gift and she was the Guru.

To wit: One year I ordered a very expensive perfume for partner. It arrived. I wrapped it beautifully. On Christmas morning she opened it, "THERE is the body wash I've been waiting for?!" Yep, I didn't know $2.99 soap from $199 perfume. (My order hadn't gone through and she had been waiting for her soap, er, body wash) (GIRLS. I can get soap for 99 CENTS---I digress)

Oh, oh, oh, and one year when Aunt Vi was in her 90s, I bought her a very fancy perfume in a very fancy container, a skater danced around, music played when opened...she didn't seem too thrilled. Many months later I would learn that neither she nor my mother could figure out how to use it, so it sat in its box. My brother finally got in working for her. Like I say, sometimes you hit, sometimes you miss.

Now that I have less money to spend: presentation, presentation, presentation.

Any funny gift experiences you've had?

The Christmas Cookie Fight

My partner and I rarely, "fight," as a matter of fact when we DO, we remember. Such was our unforgettable "Christmas Cookie Fight."

Her family was coming to our apartment for the holiday visit. She was very excited. Me? Not so much. You see, her parents never liked me. Now, I can (and will, a few) give you some reasons why I know this, but some of you will feel I am biased or just too sensitive, so be it. The fact is they wanted me out of her life from the day they met me and every year after. When I was diagnosed with MS, they hoped that would soon end our "fling." (That was 11 years into our relationship.) After I was diagnosed with cancer, they could not hide their hopes for a final chance for their daughter's freedom. (That was 16 years in.) But, darn, if I didn't just keep hanging around as long as they lived.

When we first got together, they brought a surprise guest to our first meal out with them---a young man they thought had dated their daughter in the past and he would certainly remove my spell over her. They sat him between her and I. Diane was not pleased. Diane's family LOVED their daughter and within months we would move to MY state. They were not pleased, but message received. I would not tolerate such childish theatrics from two adult, liberal-minded (as long as it wasn't THEIR daughter, no, my FIL was cool, but the MIL lost all her hair after her daughter finally said the words, "I'm gay, Mom," and she then refused to speak to my partner for many months. Sigh. Over the years they would try other things to cause friction between us, but to no avail. They never gave up until their daughter became very ill and so did they---I was looking pretty good then. (25 years in)

And also making a rare appearance would be my partner's only sibling, her older sister, with her husband and two daughters. In a nutshell, the former hippie sister couldn't stand me either, but her issues were many and far beyond just me---she kept her girls from her parents and us. They were discouraged using psychological means, I still doubt the sister knew what she was doing, but it was a harsh blow to the grandparents and to us. Now they are far, far, away from us in spirit. The kids only know of us what they have heard, and those few holiday visits where one or both of us were ill. Back to the cookies.

We decided to bake cookies. I think *I* decided it, since I doubt my partner had baked cookies on her own in her life. Regardless, when it came time to decorate them, all hell broke loose.

Now, there is NO question that my partner is the artistic one. She is gifted at drawing, painting, graphic designing, and we, er, disagreed at how the cookies should be iced. We had them baked, cooled, laid out on our large table with all the production necessities about, very organized as we both are. It was an hour before the family was to arrive---what could go wrong?

Let me stop right here. One Christmas (20 years in), at the sister's house, the parents gave everyone a gift but me. Now, look, I couldn't care less about such childish slights, but what angered the heck out of me was their total ignorance about what such behaviour was doing to hurt their daughter! So MANY times I wanted to tell them just that--it is NOT me you are hurting, it is your daughter you profess to love so dearly! But I always kept my mouth shut and so did she. In fact, keeping her mouth shut, holding in her anger, is a trademark of my partner's.
She is the kindest, gentlest soul I have ever encountered, to a fault as *I* believe one must let it OUT. The only time I had ever seen her let out anger was over... popcorn. Yes, we were sitting after a movie had ended, reading every last credit as we do, when the cleaner-uppers start walking in front of our view. I said to the one moving in FRONT of my legs, "The movie has not ended yet. It would be nice if you would wait until we are out to..." He interrupted me with a smart aleck, "EXCUUUSE ME."

When we left, still holding my not quite finished popcorn, I asked to speak to the manager, a woman about 25 (as were we) and she acted rude. Holy 16MM! The next thing I knew my partner was FLYING over the counter at the mgr.! I had to haul all 110lbs of her flailing body off the counter, away from the frightened mgr., and out the door, PLUS she was shouting the entire time! SHOCKING. I loved it. My protector. That still makes us laugh hysterically, so not like her.

The NYU film school director in her came out 45 minutes before her family was to arrive and our love/joy/happy-happy faces had to go on---she did NOT like the way I was decorating the cookies; and my Irish Aries with Mars rising temper took great exception to her choice of where the sprinkles should go! We raised our voices, started yelling, slapping icing here and there (see end product above) and then it happened.

Only in movies and on the sidewalk to the home for the mentally ill on Capitol Hill in Seattle have I ever seen such a RED face. It looked like her entire head was about to explode! "Knock-Knock"
The family had arrived.

Well, the show must go on, we quickly pulled ourselves together and opened the door with the most jolly, "HI!" you would ever dream to hear. Just hysterical when we replay that moment now. And most of the cookies were eaten, no questions asked. But, seriously, just LOOK at those sorry-ass cookies. I'm pretty sure the cat was my doing.

The Christmas Tree Skirt

Above is a photo of my Christmas tree skirt. Aunt Violet made that for me when she was in her 90s and almost blind. It took her many months and she wrapped in, then mailed it over 2,000 miles to get to me. Christmas will never be the same without her, of course that is always true---a day can never be the same, but for my cousins still left who celebrated Christmas with Aunt Vi, we all feel a special angel is gone.

Actually it was Christmas Eve when Aunt Vi held the big party. Relatives flew in, drove in and walked in, strangers arrived too, but Aunt Vi knew us all. I think anyone who showed up would have been and felt welcomed. So many people!

Aunt Vi and her longtime companion, Ivah, were baking, cooking, and wrapping presents for days in advance. Their large, entire top floor of their house was immaculate with holiday decorations everywhere, many made by their hands. I loved to watch them prepare for the Eve, and I loved to count all the wrapped presents kept in waiting on Aunt Vi's bed. To a child, it was truly a MOUNTAIN of presents. Nobody, even the surprise guest, would go away without at least one wrapped gift.

The food was absolutely perfect and another mountain! No stomach would not be filled. Fresh baked pies, cakes, cookies, along with a turkey or ham, mashed potatoes, and many choices of booze!

Santa often arrived. There were always kids. Laughter indeed FILLED the house. No fighting, no awkward relative meetings, just joy and fun. Before night's end, Aunt Vi would drive us downtown to watch the lighting of a big Santa and sleigh display above our biggest deptartment store! That was Christmas Eve with Aunt Vi.

Christmas day was spent with my family unit of Mom, two older brothers, and me. Mom's big day to cook, She made us each our own little cornish hen! It seemed like a miracle that I would have an entire hen to MYSELF! Then we opened presents from Mom. I knew that some years Aunt Vi was financially behind the gifts, but we all played along that THESE presents were from MOM. We kids gave Mom a gift too. (Aunt Vi made sure of that! Aunt Vi and Ivah worked in a large, for Ft. Wayne, department store, so gifts were easy to come by.)

Aunt Vi knew one day I would miss those wonderful times, and so she sewed by hand, by memory, a skirt for my tree that looks just like the one we gathered around each Christmas Eve.

Decorate Cheap and Feel Rich

Most of the decorations on our tree are old Christmas cards. This is a great way to keep them, reuse them, and we just think they look great!

It is now the week of holidays, Hanukkah, Christmas, Kwanzaa, and probably some I've forgotten. So, my blog for this week will be nothing but posts filled with joy, celebration , love, oh, and one big family gathering fight that I hope you find as hysterical as we do.

In other words, no politics, no gender debates, no financial woes, no health drama, just old-fashioned good-times! 'Tis the season!

Men Who Cheat and Woman Who Love Them. Hypocrites All.

A friend with secondary progressive MS, like me, was chatting with me yesterday and she was very upset, angry really. (Women get upset, men get angry, right?) As my loyal readers know by now I am a liberal Democrat, born and bred, runs in my blood, though I never dismiss anyone, Lord knows I've fought my genes many times, but if I lean off course it is usually toward an independent, green party, or some socialist. I doubt I can lean to the right, but I am young (LOL, yep, I said it) and I keep my options open. Anyhoo, my friend was as mad as I've ever heard her--over husbands cheating and leaving their wives once disability steps into the picture.

She made the comment, "And they know we are too disabled to write about it!" (Yes, it has happened to her.) Well, somehow I have been blessed, er, lucky, to still be able to write about anything I want and especially appalling to me are stories about what I believe many WOULD write about, if they could. Living now in a retirement community, I am filling up with stories FAST. Back to my friend with MS.

Apparently Meghan McCain, daughter of Arizona Senator (and former presidential runner, Hanoi survivor, you know the guy) John McCain, is selling her latest book. Ms. McCain has been on many 'talk shows,' Fox News, blogger, writes for The Daily Beast--she has opinions and people are anxious to hear them. Sometimes she agrees with her father, sometimes not--people like that stuff. She strikes me as a mini-John McCain, trying to not be boxed in, labeled, just most of us. Again, however, it is the cloud that won't just disappear when she speaks of how great her father is: He married a swimsuit model who, after being disabled from a horrendous car crash, became no longer the sexy bombshell he married, but more of a drain on his desire to have sexy-bleached blonde young model sex. So, he started having affairs, until he married (well, I have no idea how many, if any, affairs he has had on current wife, wives always get too old at some point for such men it seems...) Cindy McCain, much younger wealthy heiress of a beer company.

Ross Peroit, according to reports, paid for much of the first Mrs. McCain's surgeries after the car accident (John was in Hanoi prison) and has said, "McCain is the classic opportunist. He's always reaching for attention and glory. After he came home, Carol walked with a limp, so he threw her over for a poster girl with big money from Arizona. And the rest is history."

Carol McCain sees it differently, "My marriage ended because John McCain didn't want to be 40, he wanted to be 25. You know that happens...it just does." John also agreed to pay for all Carol's medical bills for life. But 2+2=4 and when a wife becomes disabled, or gets cancer, AhhhnewtgingrichCHOOO, excuse me, other healthy, young women start to look much better than any marriage vow. You've heard that vow? "...in sickness and in health..."

That hypocrisy among GOP men who give their speeches about "morals" is enough to make Mother Teresa mad! And any woman who has been dumped for a younger model feels the sting of that hypocrisy, if she has any feelings. So, Meghan, when you speak of how great your dad is, remember your slip is showing if you imply he has strong morals. If you say you are his oldest daughter, remember that he had a daughter before you with that disabled former swimsuit model he dumped. OR, keep "morals" and "character" out of your political equation, because your father's math is, uh-hem, FUZZY.

Another close friend of mine who has MS, HER husband actually told her, in the car after leaving her neurologist's office and finding out that she had MS, that he wanted a divorce because he knew he couldn't handle it.

Before I end my post, my personal feeling is that this total disregard for marital vows of men (GOP or DEM, AAAAjohnedwardsCHOOO) whose wives become ill in some way and they in turn seek solace in the beds of young women IS so disgusting, cowardly, and plain filthy, that not ONE such man should dare bring up character or "God" or morals in any words out of their mouths. Any man who dares to accept awards for his "molding of young men," and is then found to be raping them should be FIRED, MIRED, and never HIRED anywhere but the prison laundry room. Any "Man of God" who is molesting children should be (see above PLUS) DE-ROBED.

And those who overlook such actions, forgive and forget? Unless you can somehow make all the harm you have done forgotten, wiped away from the universe, then don't EVER preach to anyone about what is right and what is wrong. That makes you a HYPOCRITE. And we are a better people than to be led in any way by YOU.

Too Old to be Cared For: Characters I Have Known

Viv always wore purple. She was 99 years old. We sat next to each other in the dining room. Her two sons were very attentive, but like most adults who place their parents into a retirement/assisted living home, both had full-time jobs and were very busy.

When I met the one son my gadar was on high. He was very loving and visited often.

Viv didn't hear well, but well enough. What I remember best about her was that unlike the rest of us at our table, she ate EVERY BITE on her plate, EVERY DAY. The portions were often large and the meats were sometimes so tough I could barely chew them, but not Viv.

Every night after dinner, Viv went to the movie room and 'watched' a movie, actually (and she was the first to admit this) she went there to sleep in the over-sized, comfy, chairs.

One day I saw her sitting in the library. That was unusual. I asked her how she was and she said she had fallen. Then a caregiver appeared and told me Viv refused to let her call the medics and her sons couldn't be reached.

I rolled up close to Viv, "Viv, do you hurt?"
"Yes."
"Where?" She pointed to her hip.
"Viv, can you stand?"
"No. It hurts."
"Viv, you should let some medics check you out."
She frowned, "NO. I don't want my sons bothered."
"They won't be bothered."
"I'm afraid."
"What are you afraid of?" She looked away.
"My clothes are in the laundry machine."
"I'll take care of your clothes."
"What will they do to me?"
"They will poke you and listen to your heart, maybe take you to the hospital for an X-ray."
"An X-ray?"
"You might have broken or fractured a bone. Maybe you just pulled a muscle, but they need to be sure."
"I put my clothes to dry on a string across my balcony."
"I'll make sure that happens. If you can't stand then you can't go to the toilet. Will you let us call the medics. We will make sure your sons meet you there, ok?"
"Okay." The resident staff caregiver was standing there, I nodded to her and off she went, only to return moments later and she motioned me aside. Viv's son had been contacted and he said that his mother was overly sensitive to pain, so the medics would not be called. The hair on my neck went up. I phoned the front desk and the staffer there reiterated what the caregiver had said.

I said, "Okay, but this woman can't even stand. I will call YOU when she needs to go to the toilet and YOU will be held personally responsible for making the decision not to call a medic."

Over the years I have found that making someone aware that they will be responsible, that there is someone who bears witness and will speak up, usually gets them to make more sensible decisions. (CTA, cover thy ass)

The medics arrived, the staff CNA had left for the day (Viv was living as an independent at my facility), and Viv was all alone in the library when the medics arrived. My mother's voice was again in my brain saying with disgust, "This is none of your business." I moved away, but close enough to hear.

They tried to get her to stand but she cried out in pain. They poked her in her groin area, again she grimaced. Then I heard the one say to the other in a low voice, "She is almost 100." followed by, in that condescending 'I'm speaking to a 3 year-old tone,' "You sit here awhile and you'll feel better." They began packing their bags. THEY BEGAN PACKING THEIR BAGS!!

"What are you DOING?" I said as I moved in. "This woman can't stand! She was walking an hour ago, she fell, she is obvious pain!"

"Who are YOU?" the one tall, strong medic said.

Opening my cell phone, I said, "I'm someone who cares! Would you like to speak directly to her son?" (Yes, a bit of a bluff, though I didn't have his number, the front desk DID and I would get on the manager if I had to, but that wasn't necessary.)

The medic bent over to her, "Viv, we are going to get you to a hospital, for some tests, okay?"
"Yes," she said softly.

I never saw Viv again. She was moved to a nursing home. I did make sure her laundry was taken care of.

"She is almost 100..." Sigh.