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.
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.
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 three weeks earlier. 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 for those two days. Barely warm. There was a blizzard roaring outside.
Friday morning, with the water gone, I called the Incompetent Wankers to come fix 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.”
By this time I actually had chest pain and was weeping. 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. There was no way I was going to let them go without fixing my boiler.
So…I planted myself in front to 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:
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.
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)
I started Nourish with the idea of creating a support group for losing weight.
Instead, I have gained an additional 50 pounds. Maybe I should have started a support group to gain weight.
I was soooo earnest and serious when I started out. My son was getting married in a few months and I was going to the gym almost every day. I was swimming, blissfully. I could backstroke in laps for an hour without pause, gliding through the water, meditating and praying as I went. It felt so good.
Then came…The Fall.
Breaking my shoulder has been a life altering event in so many ways. But I have to say one good thing about it was how that experience changed the direction of my blog.
Writing about it was cathartic, but more than that it began to engage me with my readers in a whole new way. I became more personal, more irreverent and, I believe, more fun. I met people through my writing who related, who sympathized or who simply enjoyed my wacky stories. Some of these people have become dear friends. Meeting people with every new post has been a delight. It is such a thrill to hear from people and know you have touched them in some way.
The writing itself has been pure joy. Sure there are times I am dry as a bone, don’t have an original thought in my head, never mind an amusing one, and I feel like an utter failure. Struggling with depression, the Celtic Curse, can take away language for weeks. But when I can get started on something and it keeps going, and it gets funnier, or more poignant, and I know it is working, that my words will move someone, nothing in the world is better.
I have written my whole life, knew that was what I was supposed to do, that was my skill and my calling, but I made excuse after excuse not to pursue it. It’s not practical. I could never make a living. I’m not good enough. I am too busy raising my family and then, supporting my family. I believe I put all these obstacles in my way because deep down I felt I did not deserve to be what I was born to be.
Two years ago I wrote:
We are all struggling with issues of health or weight or self-image. This is the place to share successes and defeats, struggles and triumphs, even little ones. Share ideas, tips, be cheerleaders for each other.
That is exactly what has occurred here. Although I originally had a different objective, the friendships, the insights, the love I have received from writing this blog have ultimately been so true to the title. My heart and spirit have been nourished by you all.
Anyone reading my post yesterday I’m sure came away with raised eyebrows and perhaps scratching their heads, especially regular readers.
It is quite possibly the most embarrassing mess of typos I ever produced and I put it out on the Internet for the entire world to see.
I was sick over the weekend and something as simple as having a virus caused MS to come galloping back with a vengeance. I wasn’t even going to mention it here in the blog because it is simply too tiresome. However, the medications I take for all the different symptoms can, how should I put it? Hmmmm. I know… render me addled and illiterate. And that is just what occurred.
There was scary grammar and frightening (or absent) punctuation. There were misspelled words and sentences that made no sense. It was…pretty bad.
I was able to edit the blog post on line, but the e-mail version is forever. So I apologize to those of you that I left shaking your heads in horrified disbelief (hee hee, I love hyperbole). Next time I will be more careful with my editing. As in, I will actually do some.
Robert Wilensky is a distinguished professor of subjects so complicated I have no idea how to even describe them. At any rate, he is well known for the quote, "We've all heard that a million monkeys banging on a million typewriters will eventually reproduce the entire works of Shakespeare. Now, thanks to the Internet, we know this is not true."
We have all seen unreadable schlock out there. But what blows me away is the fact that if you wade through the bad, you will find absolute gems.
One such gem is my friend Marc’s blog Wheelchair Kamikaze. Marc is funny, erudite and a visual artist, as demonstrated by his photography. Marc also has Primary Progressive MS, which has worn him down physically and emotionally. PPMS is a more debilitating and more advanced stage of MS. Through all his challenges, he’s a mensch and I just love him and his wonderful, wonderful wife.
I would strongly urge you to take a peek at Marc’s blog for sheer pleasure. He is witty and poignant and some of his Wheelchair Kamikaze death-defying films are hilarious.
Marc’s blog has also been nominated for an award as the Best Patient Weblog of 2009, sponsored by Medgadget.com. This award is prestigious and an honor, so I would love to see him win. He deserves it for the general excellence of his blog content, the writing, photography and films.
All the nominated weblogs look great, but I do have a few personal favorites.
The Blog That at Manhattan by Dr. Peggy is a fun site that combines both wry and serious observations about food, life in New York City and the practice of medicine. Her recipes are amazing. And, through her posts and comments, she strikes me to be a great doctor.
Musings of a Distractible Mind is a great blog I recently discovered. The author, Dr. Rob, is very, very funny. But he can be serious as well and provides a wealth of information about working with your doctor. I love Dr. Rob! He picked my blog post as his favorite in a recent Grand Rounds. What could be not to love? Sigh.
Unfortunately, Dr. Peggy and Dr. Rob are positioned against each other in the category of Best Medical Weblog. I don’t know how people can decide. They are both awesome.
And finally there is the gentle and sometimes harrowing blog of an Emergency Room physician. His words positively glow off the page when he talks about his family, especially his late mother. It is beautiful. He is also a compassionate physician who displays nothing but respect for his patients, even the most difficult ones. I know he would be thrilled to find StorytellERdoc (he is under best Literary Medical Weblog.) a winner.
Thanks if you vote and thanks any way if you even think about voting. The polls are open until February 14. You don’t have to go anywhere, you can vote right in your pj’s at your computer.
I want to say may the best blog win, but since they are all great that is just too hard. But DO vote for Wheelchair Kamikaze if you can, because he is my dear friend and a brilliant thinker.
I owe my readers an apology. It seems I have been inadvertently scaring the pants off of people, or just plain irritating them, by blasting Bruce Springsteen singing Born to Run.
When we went to his last concert in October, I did this fun slide show of our pictures, backed it up with Born to Run and posted it. I loved watching it, because I relived what a blast that night was each time.
Unfortunately, for many people, the music bursts out with no warning within a few seconds of pulling up my blog. SO obnoxious!!! It was supposed to only play if you clicked on it. My friend Christine told me it scared the bejesus out of her every time she went on. But I didn’t believe her. I mean I thought it was just a quirk in her computer.
Then I received a lovely, complimentary e-mail from a reader. At the end she graciously asks if she could adjust the music I have behind my blog.
But I don’t have any music behind my…uh oh.
So I apologize for being a blogger with bad manners, even though it wasn’t intended. I changed the slideshow into a link, so that should solve the problem (although it really is worth watching). Thanks for sticking with me even though I innocently broke the rules and annoyed the hell out of you.
Grand Rounds is a weekly compilation of the best medical blogs. It is hosted by a different person each week, and they usually organize the submissions into some kind of theme. It is read by thousands of healthcare professionals and patients across the country.
This week’s Grand Rounds is hosted by the irrepressible Dr. Rob, a primary care physician, who writes Musings of a Distractible Mind. His blog reveals him to be a compassionate, funny doctor who takes his work very seriously.
Now Grand Rounds are hardly what you would call dour, but they usually are pretty staid. Enter Dr. Rob, on Groundhog’s Day, and you have one of the funniest things I have read in a long time. And that is not sucking up. Because Dr. Rob already chose my blog post about Jacqueline du Pré as his favorite for this week!!!!!! AAAGGGHHH!!!!!
He likes me. He really likes me.
I am completely flattered and totally blown away. What means the most to me is that here is a doctor who gets it. He has empathy for his patient’s pain. What a gift that is.
I asked him to marry me, but I haven’t heard back yet.
So, thanks Dr.Rob!
Here is this week's Grand Rounds. There is some wonderful reading there:
I know it's been a few weeks, but I am sitting here listening to the McGarrigle's and just feeling so sad at her loss. And feeling so bad for her family. Rufus posted beautiful things about his mother on his website. It made me cry.
I actually think her memorial service is today.
I have loved the McGarrigle Sisters since I first heard them in 1975, when I was 21. Kate's death makes me feel so old and mortal, instead of the way I felt at 21, invincible, with thousands of years ahead of me.
When Dr. Wonderful recommended a pain management doctor, I was eager to take advantage of another specialist, a part of a team. I felt hopeful, especially after I researched the different modalities used to treat pain caused by the kind of spinal cord damage that I have.
It is time consuming and exhausting to get to multiple doctor appointments. It is stressful going to someone new. But Dr. W. had said this guy was the best and ‘a good listener’, so I envisioned a consult where I would tell him my history, we would discuss all my options and he would be a guide for my best choices.
The office is sumptuous in a tacky way and very smoothly operated. A tech, who spoke so quickly I didn’t understand a word she said, took my vitals. A Physicians’ Assistant came in and asked where my pain usually was. She did a half-baked neuro assessment and looked at the MRI films I brought with me. She examined them with a furrowed brow and I suspected she had no idea what she was looking at. I pulled up another film. “Do you want the sagittal or the medial view?” heh heh I was proud of that.
She said what she put up, a side view of my cervical spine, was plenty. Then she said the doctor would be right in.
He did appear after a few minutes. I was sitting on the examining table, as I had been told to. He stood on the other side of the room leaning against a cabinet, reading some notes. He asked where my pain was. He frowned and said, “This problem is neurological, there is nothing I can do for it. I will give you Lyrica and you come back in 4 weeks.” He made for the door. I thought of my research and said “But don’t you treat people with pain from Transverse Myelitis?” “No” he said, “call your neurologist, that is who should take care of that. The Lyrica will help.”
And he was gone.
He never examined me, never even came near me, didn’t ask my history, barely even asked me a question, never mind was a good listener. He literally was in the room for less than three minutes.
I sat there for a second, simply stunned. I had thought I would be leaving full of hope at the possibility of a reduction of my constant pain in the future. Instead, I got the bum’s rush. I was so upset I was literally breathless. By the time I got to the car I was crying. What the heck just happened? Where was the ‘team approach’? This doctor could not have been less interested in me. The visit was a complete waste of time.
I guess there are other pain specialists out there. But when you are sick, chasing down good care, finding someone who is not like Dr. You’re Boring Me, is utterly demoralizing. You get labeled as demanding or difficult when you hold someone to high standards, even though everyone should.
Some people think I am brave, but really I’m not. I’m a miserable coward. The likelihood of having intractable pain for the rest of my life leaves me reeling. The idea that a physician who treats pain would be so indifferent and dismissive is infuriating, beyond frustrating. The prospect of having to fight to get what I need is overwhelming.
I don’t know how he is going to bill my insurance company when he never did anything. I don’t know how I am going to handle this, if I will bother letting him know how upset I am. I do know I am furious that I was dismissed the way I was, especially after the research I did. I know there is treatment out there and I am going to find it.
But first I need a lie down. And then maybe an entire peanut butter cream pie from Wegman’s. Washed down with vodka. Lyrica-schmyrica.
I have been dragging for months and feeling like death on toast.
(Like Death on Toast, a Play after Pirandello in One Act:
Marie: Waiter, I would like some toast please, with marmalade. Waiter: I’m sorry madam, we’re all out of marmalade, we only have Death. Marie: But I don’t care for Death on Toast. Waiter: I’m sorry madam. Marie: I really, really don’t like it. Waiter: I am very sorry madam, it’s all we have. Marie: (pouting) I hate Death on Toast. Waiter: If I may be so bold madam, perhaps if you had not done something terribly wrong in a previous life, we would not be out of marmalade. Marie: It is all my fault, isn’t it? Waiter: I’m sorry madam, yes, it is. Marie: Waiter, I would like some toast please, with Death.
The End )
My broken shoulder has been agony despite three surgeries to try to get rid of the pain. When I tell you I was ready to tell my ortho to just amputate, I am not kidding.
Last week Chris, my PT extraordinaire, had an epiphany and said "maybe your arm pain is referred pain from your neck?".
And I innocently said, well, the Transverse Myelitis caused a large lesion on my cervical spine.
Bingo.
Chris and I looked at each other. It was time for the steroids I hate so much and had put off for so long.
I called my neurologist and told his secretary I thought I could use a course of solumedrol. Dr.H is so awesome. He totally respects my assessments. No questions asked, it was ordered.
At any rate, the visiting nurse came Wednesday and started my IV. I did the first infusion. And within hours I started to feel unbelievably better. The sensation of having been pummeled all over began to fade. My legs and knees, which were so weak and painful that yesterday I was using a walker, grew stronger and steadier as the day progressed. But the best: my arm and shoulder pain, which has been unceasing for almost two solid years, through three surgeries, has gradually eased until I am absolutely comfortable tonight.
Everybody has different experiences with IV steroids. Sometimes the side effects are simply intolerable. They have the potential to do incredible cumulative damage to your body. I have found that they aren’t always effective. Last time it wasn't at all. So I am very careful about choosing it as an option. This is my fifth course in five years, but the last one was a year and a half ago. I figured that was a long enough break. I was desperate this time.
When I went to see Dr. Wonderful for a surgery follow up on Tuesday, I was trying so hard through the whole visit not to cry. My arm is completely healed from an orthopedic standpoint, he told me. There is no reason for the pain, bone wise. And in my head I am thinking “omg omg omg what am I going to do?!?!” Fortunately, he wasn’t throwing up his hands. He is wonderful. He carefully read the PT report about the neck lesion and thought the theory had a lot of credibility. “That’s where all the nerve bundles originate.” He referred me to a pain management specialist. He said “We’ll treat this as a team.” Dr. H.’s secretary is faxing over as much info about the spinal cord damage to the pain guy as she has. What more can I ask for?
While Dr. Wonderful was writing prescriptions, I had nothing to look at but either him or the floor. Of course, given that I have the maturity of a ten year old, through blinking away my tears, it certainly doesn’t hurt that he is cute as a button and dresses impeccably. I was mesmerized by his gorgeous socks and idly wondered if he threw them out after each wearing. Because nothing that pristine could come out of the washing machine. Were they silk? Did his wife wash them by hand? Good thing he wrote fast, who knows where else my mind could have wandered.
By the way, now that you know about his socks, I have permission to use his real name. For the past almost two years I received the most incredibly optimistic, compassionate and skilled care from Dr. Brian Torpey of Tinton Falls, NJ. His real name is Dr. Torpey, but he will always be Dr. Wonderful to me.
So after two days of Solumedrol I have slept a total of five hours. By tomorrow I will be a perpetual motion machine. I will not be able to stop talking, or writing, as you can see already by the length of this post. I am walking without a cane. Nothing hurts. Yesterday I got washed, dressed, made up and was out the door with a cup of tea to Physical Therapy in twenty minutes flat. On Tuesday it took me almost twenty minutes just to wash my hair in the shower.
Unfortunately, next week I could crash and burn. But for these few days I am giddy with the sensation of normalcy.
Not many people love January. It’s unpredictable, it’s cold, it’s blah.
For me, since I found out I had MS, January has been Jackie’s Month.
Jacqueline du Pré was born in January 1945 to a musical family, but of all of them, she was special. She was a genius as a cello player, a prodigy. Her passion and unique style raised eyebrows but made classical music cool in the late sixties.
Here is Jackie playing Elgar, conducted by Daniel Barenboim, who was her husband. It is magical.
She found out she had MS around 1970, when she was 25. By the time she was 28, she could not play anymore. That fervor, the contagious delight of making music and the excitement she generated doing it was done. She died when she was 42.
Where she was:
Where she went and where I’m going:
I am excruciatingly aware there are other bad things that happen to people. Because they’ve happened to me as well. I lost an eye in an accident at 4. I had to have my shoulder replaced because of a fall. There are other terrible diseases out there.
So I say this for all of us. Life is like a tunnel. There is before diagnosis, behind us, where there was some light. And then there is after, ahead of us, dark and unknown. It is the unknown, along with the daily struggle to dress and walk and bathe, that causes a howl of injustice inside your head. A shriek of grief so primal, you can never let it out.
This clip from the film about Jackie and her sister portrays it perfectly. She looks down the tunnel of her room, staring into her past life, represented by the dress, which further taunts by moving effortlessly. This few minutes of film captures what it feels like every time you remember once again you have Multiple Sclerosis.
Since the demise of my laptop it has been awfully hard to type on my desktop. Don’t get me wrong, I am endlessly grateful for the fact I have a back up computer. But there is something about the angle, the height of the desk, something, that just causes my operated arm to ache terribly after only a few minutes.
It limits the time I spend online, so I have not been writing, or corresponding, as I should be. I will be rectifying that before too long by either a repair or replacement, but I have not been up to getting that taken care of.
MS has been kicking my butt for the past few weeks. I suppose the stress of the surgery combined with the holiday, it just ramped everything into high gear. The exhaustion, even after doing absolutely nothing, is astonishing. I have had to cancel long looked forward to plans at the last minute several times because I could barely contemplate mustering the strength to brush my teeth, never mind get dressed.
New Readers
I wasthrilled to discoverI had new readers this month who actually left comments. Unfortunately, they were Asian pornographers. Not that there's anything wrong with that. But I didn't think they were a particularly good fit with the rest of you. So I did delete their comments. If I am wrong and you guys would love some nice explicit Asian porn on my blog, just let me know. I can always reconsider. No Christmas Miracle
Last Sunday afternoon I eyeballed my now useless laptop and thought “Maybe I could fix it?”
(Kindly reserve all laughter until the end.)
People fix computers. I am a people. Ergo, I can fix computers.
So I got my beading tool kit with the teeny tiny screwdrivers. I asked my beloved Grandma to be with me in spirit, because I know she knew how important my laptop was to my career and my writing. I put on a CD of Celtic Christmas Carols, you know, to get that ethnic support thing going. I ate a tootsie roll, for strength. And I got to work.
At the start, I was fully aware that anyone who was murmuring ‘righty tighty, lefty loosey’ as they unscrew teeny little screws has no business opening up an expensive electronic appliance. This did not stop me.
I opened everything carefully, stared at the contents in awe, blew away some dust and said a prayer. I put everything back together, confident I had performed a marvel.
Alas, it was not to be. And I always hated those freaking bagpipe Christmas Carols. Christmas and New Year
All my children and my precious grandson came together to celebrate Christmas Eve at my house. I love them all so much. They are funny and smart and truly good people.
I grew up in New York City and my childhood Christmas memories revolve around the city. It was a ritual to visit my father’s Fifth Avenue office at Christmas time. I would be in my holiday finery of a crinoline stuffed dress, a wool coat with a velvet collar, usually leggings to match and a white fur muff that hung around my neck on a satin string. Patent leather Mary Janes and white tights completed the outfit. Hideously uncomfortable yet adorable. Just the way I eventually tortured my own children.
After being paraded through the offices, we would walk the few blocks down to Rockefeller Center. I would gape at Atlas holding the world, which for some reason always fascinated me. The lights on Saks always enthralled me too, and then, there they were, the familiar welcoming, trumpeting angels that preceded the tree.
I never remember eating dinner, although I suppose we did. Because next on the agenda was the Christmas show at Radio City. We always went in a private entrance because…I have no idea why. My grandfather was a popular police lieutenant in that precinct and I think that had something to do with it, he must have gotten VIP tickets. When we were dating and my husband once said something about the long lines to get into Radio City I had no idea what he was talking about. We would go in a side door and up an elevator that I remember was lined with tufted, wine colored velvet. I guess I was a little bit spoiled.
(This picture is Rockefeller Center in 1955, when I was a year old)
Moving Forward
I want to say I have been under the weather, but for me that actually means under the covers in a major funk. And who wants to hear about that?!?!
While wallowing in misery is just about one of my favorite occupations, I do occasionally make half-hearted attempts to raise my self-pitying spirits.
There is therapy of course, where my beloved therapist offers me a million tools that I promptly forget the minute I walk out the door and revert to my one of my other favorite occupations, self loathing.
I also listen to meditation and affirmation CD’s. I know, I know, images of Stuart Smalley. So what’s so wrong with that? They actually are helpful, if slightly comical. (And by the way, if you have never seen Stuart Saves His Family, do yourself a favor, it is hysterical, especially for anyone who grew up in a dysfunctional household and/or has any familiarity with twelve step programs.)
My favorite inspirational CD’s are by Belleruth Naperstak. I really like her guided imagery but I love the affirmations.
These are the ones that speak to me the most:
Regarding my own strength: I salute my ability to survive and my courage to heal in spite of what I have experienced. I understand that there are treasures waiting to be discovered in the anguish of my past.
I know that I have things to do, gifts to give, purposes to accomplish that require my full strength and courage and peace of mind to do this.
Regarding obtaining strength from the people in my life, past and present:
I am aware that I am surrounded by a protective cushion of all the kindness, tender thoughts, good wishes, prayers, gentle smiles and sweet gestures that have ever been sent my way.
The most comforting of all: I know that I am held in the hands of God and I am perfectly, utterly safe.
Happy New Year everyone!! I’ve missed you!
To leave you with a smile, here is the original trailer from Stuart Saves His Family. The cheapskates have not allowed any clips onto You Tube.
My beloved grandson James Shepard made his way into our lives on December 8 in 2006.
The staff at the hospital kept referring to him as a towhead, but Kate and James had never heard that old-fashioned expression and, to their great distress, thought he was being called a “conehead”. That took a little explaining.
When we got there, my sweet, hours old boy looked into my eyes and I got this amazing photo.
And here he is today.
He is ALL boy. Chatting with his other nana last night I mentioned I was knitting him a hat for Christmas. He heard this as he flew by us and, without missing a beat or pausing he declared, “I don’t want a hat.”
Alrighty then.
Thank you, thank you, thank you for being you, Shep. The Body Human
Well, if it’s post-op, I must be blowing up like the Michelin Man. And sure enough, I am.
And if it’s post-op, I must have cellulitis in aforementioned swollen legs. Check.
And because the pain of a shoulder replacement could never be enough, edematous, infected legs, with skin stretched practically to the breaking point, must be incredibly painful to walk on. Check again.
And even though I haven’t had a cold in about 20 years, I must be getting one now. Check.
Add a stomach virus for grins and giggles. Check.
So I am a tad miserably self pitying uncomfortable.
I am incredibly lucky this go round to have a marvelous health team and all of them are on top of these crap symptoms. Unfortunately, the treatment is usually pretty crap too, but what are you going to do? One hundred and sixty milligrams of lasix might cause someone to pee forty times a day, but it might also help prevent heart failure.
Dr. B., my regular doctor, is every word you can come up with that is synonymous with kind. I knew the reason for every obnoxious medication he had to add to my already obnoxious regimen. But he made a gentle little case for each one because he is so respectful and so generous with his time, subtly reminding me he is not out to deliberately torture me. So What Else Is New?
I am actually disappointed that I was not able to be cleared to go back to work yesterday.
I am filling the idle hours with puking and blowing my nose reading and knitting. My friends had twins last week and I am knitting them hats. The babies, not the parents.
Because my sleep schedule is off kilter right now, I do most of my knitting in the middle of the night. I needed to check the size of the hat I was working on, but was reluctant to drag myself up to the attic and search for a dolly to fit it on to. Then my eye rested on this:
Not that I did, mind you. But it was tempting.
I once read a suggestion that for a baby hat, a grapefruit is a good size check. I would not recommend this. You will never look at a grapefruit or a baby quite the same way again.
So here is the first hat:
And the second will have a pink lambie. Fun to do.
Welcome to Nourish: living, laughing, whining. Here is a blog where you will find encouragement, boring stories and, best of all, self-pity!
Yikes, what a journey this is!! Who needs to do it alone?!? And without laughing?!?
In my posts I consider how it helps to have a sense of humor while exploring life. Oh, and how important it is to take care of ourselves physically and emotionally. Don't forget that.
This site was inspired by the brilliant ideas and input of many dear friends.
About Me
Marie
I am just like you - on the journey, coping with Multiple Sclerosis, putting one foot in front of the other and trying to find the best way possible to do so, with a little help from my friends.
Twenty years from now you will be more disappointed by the things you didn't do than by the ones you did. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover. --Mark Twain
Alone we can do so little; together we can do so much. --Helen Keller
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