MS Fund Raising Walk 2010

Three weeks from today, Sunday, April 18, 2010, friends , family and myself will be taking part in the annual MS Fund Raising Walk. It can be a fun day. There is a party atmosphere, we walk along the boardwalk and the company is great.

But it is an event I would gladly pass up. Because it is an annual reminder of the fact that I have MS and that this incurable disease has devastated my life.

Of course I am not the only one afflicted with MS. The walk is also a sobering reminder that as bad as it is for me, there are others who are even sicker. I can still walk some distances, although I need either a cane or a walker. There are people I know with MS who have lost that ability, so to a certain extent I am lucky. I do need a wheelchair for any length of more than a block or two. I hate it, but at least it allows me to get places.

MS has stolen much from me. It has distorted my relationship with my children, who are often required to be caregivers rather than simply my kids. The same goes for my friends, who are wonderful and generous and solicitous, but I would rather be a plain old friend. It has taken away the ability to do anything spontaneously. I have to always worry, are there stairs, where is the bathroom, will there be someone to help me if I need it? I was just laid off from my job. How much of their decision had to do with the fact that despite being one of their top producers, I was a very expensive employee as far as health insurance goes. It was a self insured company. My health care costs run in the thousands every month. I am a liability to a small business. There are wonderful jobs out there that I am fully qualified for intellectually and professionally. But I can’t travel easily anymore. I can no longer maintain the pace I demanded for myself as a department head. So my hard earned career, which was going nowhere but up, is now in tatters.

I am in pain all the time, either from muscle spasms or from haywire nerves. So I tend to do things less and less. Running an errand is a project. It is a struggle to even get dressed.

The disease progresses incrementally. There is no predicting how far or how fast it will go. Statistics say most people with MS will have their life shortened ‘only’ by about seven years. When the time comes, how much will I want to have seven more years? Or will it be sooner? As immobile as I am, will I develop a pressure ulcer? I am on a powerful and dangerous medication to slow down the progression of the disease. Will I contract an infection that my immune suppressed body will not be able to fight? Will my next stumble and fall (for I am always stumbling and falling) be fatal?

Here is the thing: it is crucial to know the ‘me’ in the preceding paragraphs is EVERYONE with MS.

That is why the MS Walk is so important. The NJ Metro Chapter has an excellent rating as a charity. Almost 86% of the money they raise goes into programs for those of us with MS and into research to find a cure. There have been so many developments to treat MS in the past decade alone. That is thanks to fund raising for research.

Whether or not you live in the New Jersey area, I would love for you to be part of my team. You can be a Virtual Walker, collect donations and never have to set a foot anywhere. Or you can come join us on the Belmar boardwalk. Or you can make a donation to our team. I would be thrilled by any of those. This is the link to my team page:

http://main.nationalmssociety.org/site/TR?pg=team&fr_id=13121&team_id=204925

And if all you can do is wish us well and keep us in your prayers, I am incredibly grateful for that as well.

Thank you to those of you who have already made donations and for your beautiful messages of support. I am astonished when someone calls me an inspiration or brave. I'm just me. But thank you for thinking and saying such lovely things.

Thanks to all of you for reading my blog. And thank you for anything you can do to support the MS Walk.

Please leave any comments about your own experiences with the walk or with MS. I would love to hear from you.

Photo Friday

This is a candid snap of my grandmother, Anna, with my father on her lap.

He was born in April and it looks like November-ish in this picture, so it would be autumn of 1932 and he would be 7 months old. He looks like he was a lot of baby to hold!

This picture was taken in Central Park and you can see Bethesda Fountain through the trees.

These Days

It’s three minutes to two when I glance at the clock. My insides twitch and the split second thought shoots across my brain, “Better get a move on, the work day is almost over.”

But then I remember. I’m not working anymore. People all over the country, all over the world, will look at their clocks and watches and computers at three minutes to two and think they better get a move on. But I’m not one of them. And with that realization my insides twitch even harder.

I am filling my days with cleaning and organizing. But I start one project, make an enormous mess, feel completely overwhelmed and then move on to another one. So the whole house now looks as though I’ve been burgled.

In between organizing, I knit and I read and I write and I job hunt. But those things overwhelm me too and I find I cannot do any of them for more than ten minutes at a time.

The job hunt feels so futile. I applied online for a position with a large managed care company. I sent the electronic submission at 10:58 am. At 11:04 am I received a thanks-but-no-thanks e-mail. The job description fit my résumé almost word for word. Yet somehow it still only took six minutes for them to reject me. I did not feel as though this boded well for my future employment potential. It makes me wonder if there is some secret, subliminal code in my CV that says “Don’t hire her; she’s a loser.” Or maybe there is a Ten Most Unwanted list that Human Resource Departments cross reference.

I am developing a Bad Attitude.

I had lunch with a high school friend that I hadn’t seen in years. Catching up meant many tales of woe. When we came out of the restaurant, I had a flat tire. This sweet woman was so upset for me. But to me, a flat tire is now the equivalent of breaking a nail. It still makes me smile a little bit to think she thought it was a big deal.

Basements full of sewage are a big deal.

No heat during a blizzard is a big deal.

Losing your job is a big deal.

A flat tire? Practically a lucky break.

Not that I’m bitter or anything.

I try to remind myself that life is good.

I still do believe that, but I have to work a little harder at it right now.

On the plus side, it is Spring.

Trying Something New: Photo Friday

I am going to try something a little different. In addition to my regular posts (when I can think of one!), once a week I will post photos with a story. I have such an interesting family that I could go on for years. At least I think they’re interesting. lol Please give me some feedback on what you think.

A Pure Moment of Happiness



These are pictures of my Aunt Hanna and my Grandmother, Anna, laughing.

My Aunt Hanna had been sick since she was in her forties. They said it was a stroke, but I think, in light of my own MS, she may have had it too. At any rate, laughing was not something she did often. So when I recently found this photo I was both stunned and delighted, because I loved her.

In the other picture, my Grandmother is sitting next to her older sister, Mabel. I am the big fat baby on my Grandma’s lap. The little petite one is my cousin Jeannie, on her grandma Mabel’s lap. My grandmother had a very hard life and there are not many photos of her laughing either, so I treasure this one.

Hanna and Anna were twins. They were the third and fourth girls of what would eventually be five. Their little brother Edmund died before he was one.

They were born in Leadville, Colorado in November of 1897. My great-grandfather was a miner. By 1900, the Census places them in Denver. But within the next few years they returned to Prince Edward Island, Canada, where my great-grandparents were from originally. I can only imagine what it was like to travel across the United States to PEI with five little girls at the turn of the century!!

My grandmother told fantastic stories about growing up in PEI. By fantastic I mean pretty much unbelievable, but she swore they were true. These were a mischievous pair and if they were told not to do something it was almost certain they would do it when no one was looking.

Don’t ride the rogue pony. My grandmother climbed on his back, was thrown and suffered lifelong back troubles.

Don’t touch the ax. She did and says she cut off her big toe! But the good part of the story is that she patched it back on with mud and herbs and it grew back. Hmmm.

Glass was a precious commodity at that time and place. My great grandfather had gone into town and bought a piece to fix a window. Until he could get to it, he slid it behind a dresser for safe keeping. Hanna and Anna were playing hide and seek, one went behind the dresser and…goodbye glass.

He went and got another piece. He hid it in a closet. Same scenario. Third piece. Under the bed. Guess where Hanna hid? They got a licking that time and the fourth piece of hard gotten glass survived.

They had fascinating lives, ultimately ended up living together for the majority of that time in Manhattan. My Grandmother took care of Hanna after she got sick, along with working full time and raising my father as a single mother.

They were both so good to me, so loving and nurturing, I adored them. They have both been gone for over forty years, but I miss them still.

I am so glad that at least a few moments of their happiness have been recorded forever.

A Reminder

This is a hard time for me right now. Lots of expensive work going on in the house. Some distressing family issues. Of course, the worry, actually the mind numbing, hyperventilating panic, of being out of work. And I am so weary of being in pain all the time.

But a friend sent me a video that was a good reminder of the importance of prayer, especially for those who have caused me grief. My church’s mission statement is essentially “God’s Unconditional Love Practiced Here”. We are obligated to pray for those who have hurt us.

I have a long list currently:

• The simpletons who laid me off.

• Family members who inexplicably and hurtfully don’t speak to me.

• The plumbers who destroyed my basement and then called me names.

• The pain doctor who blew me off.

• The guy whose careless driving wrecked my car this summer.

• People who leave ignorant, hate filled comments after online news articles.

• People in general who irk the piss out of me.
  

This is for them:



(e-mail readers: http://www.youtube.com/watch?v=2rn041uWncU)

Well I never said I was a saint. The mission statement says ‘practice’.

I need a lot of practice.

Muddy Waters

I live in a wonderful old house, built approximately in 1930.

Everyone loves it, it is charming and rambling and sunny and welcoming. I adore it, every unique, Craftsman architectural detail. But holy mackerel, is it ever a lot of work. Eighty year old things just are constantly breaking, falling off, falling down or simply sagging. But I figure it just goes with owning an older home.

For example, about once a year I have to have roots snaked out of my sewer line. I feel as though it is a small place to pay for my gorgeous maple, but it is a pain.

In January I used a new plumbing company we’ll call the Incompetent Wankers. The Incompetent Wanker who did the job January 27 left a receipt stating he had pulled out “a lot of roots” (so articulate) and added the promising note “30 day warranty”.

I love a Wanker who can stand behind his work.

However they also charged twice as much as I had ever paid, so I decided not to use them again.

At any rate, four days ago water began to accumulate in my basement. What do I know about plumbing? I assumed my sump pump was broken. The water rose and rose. I called several plumbers who said it sounded like too big a job for them. My friend Peter came over to assess the situation. By now there was a foot of water and my boiler and hot water heater were out.

He found that the sewer pipe that had been snaked just three weeks earlier was completely, totally blocked. And, he added, it was absolutely because the job had not been done properly. He (a repairman) said he would do it, but I had paid them so much money and it was their responsibility, they really needed to come and fix everything.

I called the Incompetent Wankers and they, with ill grace, sent out someone to snake it out again. Sure enough, once that was done the water was gone over night, leaving God awful mess. But I was still without heat because there had been too much water for anyone to repair the boiler before.

I had hunkered down by my fireplace, just putting on log after log to keep warm. Barely warm. There was a blizzard roaring outside.

Friday morning, with the water gone, I called the Incompetent Wankers to come relight my boiler. They sent two guys who walked in my house with a major attitude and it was all downhill after that.

I was, as I always am, nice when they arrived. One of these guys had been the one snaking the pipe the night before and he had to wade through the foot of icy sewer water (although why a plumber answering a call to a flooded basement didn't have waders on I will never know). While he was down there I was standing at the top of the stairs wringing my hands in absolute agony for him. I offered him tea, towels, clean things to change into (which I didn't have but I would have crossed that bridge when I came to it). He knew I was a nice normal person and he acted like one too.

But once his fellow goon got started on Friday, he joined right in. You know, I think that was one of the most upsetting parts of the whole experience.

The other guy started by accusing me of neglecting my sewer system and stated the flood was my fault. He was actually yelling at me. Now I am 5’3” tall, I’m a widow who lives by myself and I have Multiple Sclerosis, so I walk with a cane or walker. I’m not a threatening person. This guy was so unbelievably rude I finally said to him “Don’t you dare speak to me like that.” His response? “Fuck you lady. You want us to fix your boiler then don’t you talk to ME like that.”

Remember I said it was all downhill after that? Well now it sped downhill faster than an Olympic skier.

“Get out you! Just get out. Your co-worker can do the work but I want you out of my house!”

He laughed in my face. “$199 to fix the furnace.” I said “Absolutely not, you people caused this damage and I am not paying you anything.” “Ok, we’re outta here.” He declared, punctuating his statement with “You crazy bitch.”  (An aside: It has occurred to me that I should have kept my mouth shut, let them fix it and then just put a stop payment on the check and advise them why.  But then I wouldn't have had the rest of this entertaining post!!)

By this time I actually had chest pain and was weeping. I was SO cold!!!  They slammed the storm door as they left and I absolutely snapped. I raced (yes folks, raced, me who can barely walk; it is amazing what adrenaline can do) ahead of them in the snow wearing no coat and with nothing but slippers on my feet.  Well, I had clothes on too.  But there was no way I was going to let them go without fixing my boiler.

So…I planted myself in front of their truck and said, through hiccupping sobs, I wasn’t budging until my boiler was fixed.

Crazy bitch? They had no idea what a crazy bitch even was until they pushed me over the edge.

They called the owner on their phones. I called the owner on my phone. Now I have to interject these people have trucks with huge smiley faces on them. Their motto is “Same day service with a smile”. When I spoke with the owner I anticipated some level of customer service.

His response to me: he called me crazy too. And an ‘abnormal person’. OK, granted, I was sitting on the bumper of one of his trucks crying hysterically. I called my son and he raced over. He was conciliatory, trying to work things out, but they gave him the same attitude. They threatened to call the police. I offered to call for them. The owner on the phone, his voice dripping with venom, said “I am going to report you to the health department for unsafe living conditions [that they had caused]. With my connections I am going to fix it so you will be paying fines until you are 100 years old.” I was speechless.

I knew I couldn’t bear being cold for one more minute. I also knew I would not be able to find another plumber that day with the snowstorm. So I folded. I said “Whatever, I’ll pay, just fix my boiler.” But now they said I had to pay cash. And it would be $600. Six hundred dollars in cash. Which I didn’t have.

They had won. I got off the truck and leaned against my fence, crying in the snow. My son once again tried to reason with them, but the Incompetent Wankers took off, driving so fast they fishtailed as they rounded the corner.

My wonderful son put his arms around me and I just cried and cried. Because on top of everything, I was laid off on Thursday. This was all too much.

My phone rang at that point and it was my friend Peter again. I told him what had happened. He said he would be over in ten minutes and he would fix my boiler.

And he did. With a part the cost less than $50.

For a giggle, in honor of my son’s bravery and support:



E-mail readers:

http://www.youtube.com/watch?v=2V0a81GdyUA


And Now I’m Unemployed




I know that organizations are simply panting to hire 55 year old women with Multiple Sclerosis, so I’m sure I will be fine. I base that on the fact the last time I was laid off I was out of work for ten months and almost lost my house and my mind. I’m really looking forward to reliving that experience.

I am trying to not be negative. For example, I still have gas, so I can always stick my head in the oven. See, the power of positive thinking. Massive quantities of vodka and xanax are also extremely comforting.

My friends have rallied around me in a way that truly humbles me. They are absolutely holding me up at a time I cannot do so myself. Through these nightmarish few days my phone has not stopped ringing with offers of moral support and places to stay until I had heat again. My Facebook page has been inundated with messages of encouragement and prayers. My friend Jane (The Witty Ways of A Wayward Wife) actually called me from England to see if I was alright.

I can only ask God to bless them all for their compassion and love.

But I have to warn them not to get too close. I think God hates me and I don’t want them to catch any of His wrath.

And Around and Around and Around and Around….

Despite three surgeries, including, ultimately, a replacement, my shoulder has caused me unceasing, breathtaking pain since I fell, in March of 2008.

My orthopedic surgeon, my neurologist and my physical therapist have all been caring, supportive, and have offered as many potential solutions as they could. The pain management specialist was a Useless Wanker, but you already knew that. The steroids helped for a blissful few weeks, but the pain is creeping back.

We are all pretty much at the end of our ropes with frustration (except for the Useless Wanker, who didn't give a rat's ass). But now there is no consensus on what is causing the pain, which should have been relieved by the replacement.

The orthopedist says it is neurological. Go to the pain management specialist.

The pain management specialist (Useless Wanker!) says it is neurological. Go to the neurologist.

The neurologist says it is orthopedic. Go to the orthopedist.

I am going in circles.



HELLLLLPPPPP!!!!!!

(And mind that you don't cross me or you'll end up in my blog as a Useless Wanker. lol)