Sunday, June 28, 2009

A Celebratory Weekend

Yesterday was my 45th birthday. The kids and I celebrated by taking every single mode of public transportation possible (trains, trolleys, buses, a water taxi, and two ferries) to two of the Boston Harbor Islands and going to see the movie Up. It was a wonderful day, the kids' whining was minimal, the weather was beautiful, and my energy was good. I went to bed early the night before and dreamt about not being able to walk. I'm very grateful it was only an MS nightmare and that we made it back to Boston proper before the rains arrived.

Today is my ex-husband's wedding day. Our marriage began with an elopement the day before my 34th birthday. Apparently, he likes June weddings. Today's wedding actually has guests and I certainly hope it lasts. Truly. Our marriage produced two great kids but, otherwise, it sucked. I really need to believe that there is someone for everyone. If the ex found true love forever, that must mean that I can, too.

Since the kids are at the wedding and my invitation must have been lost in the mail, I decided to have a celebration of my own. I'm having a few friends over this evening for a Not-My-Wedding-Day-Belated-Birthday Party. We will all dress in ugly wedding attire and play board games. That seems about right, don't you think?

P.S. I still don't have any good photos of our Not My Wedding Belated Birthday Party attire but we looked pretty awesome and had a blast. There was tacky polyester and taffeta, lots of cleavage, snacks, Scrabble, a mini marathon of Weeds (which had to be written by someone who used to smoke a lot of pot but doesn't anymore), and, thanks to Nancy, a yummy penis cake, complete with chocolate sprinkled testicles. I hope someone has the photo of me blowing out the candles on this cake. :-)

Wednesday, June 17, 2009

Asking for Help

I do not like to ask for help. I'm not sure if it's the idea that people may say "no" or that the helper will view me as helpless. Either way, I know it's a bunch of crap. I know that when I have the opportunity to give help to someone, it feels good. I also know that NO ONE can do it all alone...with or without MS.

“The strong individual is the one who asks
for help when he needs it. Whether he has an abscess on his knee or in his soul.”
~ Rona Barret

“The glad hand is all right in sunshine, but it's the helping hand on a dark day that folks remember to the end of time.”
~ Amadeo Giannini

Successful people are always looking for opportunities to help others. Unsuccessful people are always asking, 'What's in it for me?'
~Brian Tracy

Help thy brother's boat across, and Lo! Thine own has reached the shore

~ Hindu Proverb

“I came upon a doctor who appeared in quite poor health. I said, 'There's nothing that I can do for you that you can't do for yourself.' He said, 'Oh yes you can. Just hold my hand. I think that that would help.' So I sat with him a while then I asked him how he felt. He said, 'I think I'm cured.'”

~ Conor Oberst

To help all created things, that is the measure of all our responsibility; to be helped by all, that is the measure of our hope.

~ Gerald Vann

There is no more noble occupation in the world than to assist another human being - to help someone succeed.”
~ Alan Loy McGinnis

You need to be aware of what others are doing, applaud their efforts, acknowledge their successes, and encourage them in their pursuits. When we all help one another, everybody wins.
Jim Stovall

Nothing brings me more happiness than trying to help the most vulnerable people in society. It is a goal and an essential part of my life - a kind of destiny. Whoever is in distress can call on me. I will come running wherever they are.

~ Princess Diana

“No one is useless in this world who lightens the burden of it for anyone else.”

~ Charles Dickens

“The glad hand is all right in sunshine, but it's the helping hand on a dark day that folks remember to the end of time.”
~ Amadeo Giannini

Tuesday, June 16, 2009

This video made me sob out loud with a running nose!

It also made me incredibly grateful and strengthened my belief that attitude is EVERYTHING.

Saturday, June 13, 2009

Zane's Birthday

Today is Zane's birthday. We had our breakfast cupcakes and presents before his dad picked the kids up for the weekend.  My former preemie, born at 28 weeks and just 2 lbs. 13 oz., is 6 years old. Although everything beyond breathing still seems like a bonus, he is so very much more than that. He is smart, has big brown eyes with lashes to die for, has a scientist's curiosity about the world, loves dancing, pepperoni, and reading, and hugs all his friends.

Zane will grow up with a lot of stuff on his plate. He is a child of divorce being raised by a single mom who has Multiple Sclerosis. Doesn't that sound like the background of a future President, Olympic athlete, or Nobel Prize winner? :-)

Happy Birthday, Zane.

Thursday, June 11, 2009

Another Mother and Daughter

I just read that my fellow MS blogger, Sherry, lost her daughter yesterday. My heart breaks for any parent that loses a child but learning of this news on my own daughter's birthday makes it somehow even sadder. It is against the natural order of things for a parent to outlive a child. I hope that you will all join me in remembering Sherry and her family in your prayers/meditation/thoughts as they navigate this incredible loss.

Happy Birthday Ruby!

I am now the parent of a double digit midget. That is not a slur against a little person. My former co-workers will attest to the fact that I NEVER use the word "midget" and will correct anyone who does. Today, though, I must. My daughter, who, at 5 ft. 1 inch and counting, is definitely NOT a little person, is now 10 years old. A decade. Double digits.

It seems like just yesterday that I was waddling around work, in labor without realizing it. When my midwife told me that the numbness in my thighs and the waves of discomfort in my belly were common signs of labor, I called the ex who came to get me at work. We went to the midwife's office and she said I was already 4 -5 cm dilated and I needed to get to the hospital. I insisted that we stop at home first because I wanted to pick up my Counting Crows CDs, cooler full of ice pops, and change my earrings--things that SO did not matter a few hours later.

We got to the hospital at around 5pm and, at 9:34pm, I pushed three times and out came Ruby Grace--my beautiful baby girl.

Just yesterday but also a lifetime ago. It's hard to remember my life before Ruby. I've been through a lot as her mommy--my hospitalization and the birth of Zane, divorce, MS diagnosis, my dad dying, just to name a few. Through it all, my love for Ruby has been constant and grows daily. She makes me want to be a better woman. Thanks for being born, Ruby. Thanks, Universe, for entrusting me with this special gift.

Wednesday, June 10, 2009

Wants and Needs After 2:00 A.M.

I need to pray and meditate every day, even if it's just for 5 minutes. I also feel better when I am connected to the Universe throughout my day and trying to be focus on what's best for me and not just what I want.

I need to exercise every day, even if it's just walking for 30 minutes.

I want to go to four meetings a week.

I need to talk to someone else in recovery every day, especially the days I can't get to a meeting.

I need to keep up with the request system at work so I am getting "credit" for all my work.

I need to do less Facebook Wordscraper during my work day.

I want to blog 3-5 times per week.

I want to work on my book every day.

I want to work on my 4th step every day until I finish it.

I need to remember to take all my medications as and when prescribed, including vitamins.

I need to remember that on solumedrol infusion days like today, I really should not drink any caffeine in the afternoon or I will have trouble falling I am now at 2:15 a.m.

I need to drink more water.

I need to call my sponsor a couple times a week, even when I'm not sure what I have to talk about.

I want to go to a meeting with her once a week.

I want to find a new counselor/therapist/social worker.

I want to plan a service or some kind of something to mark the passing of my dad. My grief group members and others will attend even if my family does not.

I want my family to attend and/or invite me to things that they are planning if they are planning them.

I want to yell at the kids less.

I want to clean up my room as often as I clean up (and make the kids clean up) their rooms.

I need to get a specific something on the books to have someone drive my bike to the shop.

I want to ride my bike more and hook up the bike buddy so I can go on bike rides with the kids.

I need to figure out how much I owe the summer day camp people and where the hell the bus is picking them up in a couple of weeks.

I need to do yoga more. (I was going to make this a want but my neuro says it's a need.)

I want to do strength training so I can have arms and legs like the woman who's had MS for 15 years that I saw at the MS Center today.

I need to get a minimum of 8 hours sleep a night and only take naps for a max of 20 minutes during the day if I really need one.

I need to eat less sugar.

I want to take a storytelling class.

I want to get a digital camera and start taking photos again.

I want to find the really expensive pedipaws nail file thing I bought for Pepper and then hid away when he died so I can file the very long nails of Bella so she will not scratch my new Craigslist sofa.

I need to call the MSPCA to see if they still have Pepper's ashes and, if they don't, I need to forgive myself for not paying $100 less to have them cremate him with other animals.

I need to find the name and number of the neuro-opthalmologist and make an appointment and then I need to get the name of that optometrist he recommended to fit glasses and contacts to people with optic nerve damage and visual impairment.

I need to turn off the computer and the light and try to fall asleep.

Monday, June 08, 2009

Hating the MS Today

I am feeling physically awesome. I'm back on the Rebif and go in tomorrow for my monthly solumedrol infusion (which always does wonders for my energy level). Although there are a couple new lesions, my neuro has decided that none of them are active so we can continue my current course of treatment.

So why the ill will to my illness? It has just occurred to me that my relationship may have ended because of the MS.

He's a good guy and would, no doubt, deny it. He may not even KNOW that that is the reason. I can't help thinking, though, that, when we talked about the future before I was diagnosed, he wanted to move in with me...someday. But, when we spoke about it a year and a half later, he was still not ready, couldn't guarantee that he would ever be ready, and wasn't even sure that's what he wanted anymore. Because I KNEW that's what I wanted and couldn't lie to myself or him about it, the relationship ended.

But was MS the root cause? Whether or not that's true, the relationship ended for a reason, I know. And, if he did break up with me because he was too scared to commit to someone with a chronic and POTENTIALLY progressive illness, then he is not the right guy for me. I know that.

I also know that he loved me, to the best of his ability. So, what does that mean for the next guy? I could choose to keep my MS a secret until I am sure that he is someone that I want to stick around. We fall in love and then SHABAM! When he finds out about the MS, he could drop me like a hot potato.

Or, I could be honest from the very beginning and disclose the MS on our first date just to rule out anyone who can't handle it. But then, he could see me as a damsel in distress; a sickly, defective, needy individual. I could end up with someone who wants to rescue me, or take care of me, instead of someone who sees me as a capable equal who does not NEED him but instead, chooses to share my life with him.

MS sucks and it should only be given to really awful people who are in steady relationships with a commitment for years and years and years. MS should be a disease that only inflicts really old, mean, married people who do not believe in divorce.

Ok. The funny thing is that I am still not dating...consciously, purposely. I am not looking. I am not putting out to the Universe that I want to date...but no one is exactly ASKING me out either. I am working on myself right now with my sponsor and my higher power.

So, what's the problem? I'm lonely and sad. I am missing the relationship and wishing things were different. Breaking up is hard to do but being the break-up-ee really, really sucks. I feel sad and powerless but also pissed and confused....and still sad.

Better to be pissed at MS, don't you think?

Tuesday, June 02, 2009


If you blog about having MS, I would like to present you with this award. You all help me so much more than you know.  

The imperfectly beautiful award is beautifully imperfect just like all of us with MS.  If you want to put this award on your blog or pass it on to anyone else, feel free.  Just right click on the image above, save it to your desktop, and then insert the image on your own blog.

Blog on, babies.


Here's some very, very bad news about mice. As a human being, I've decided not to get all hot and bothered about it. Or maybe that's just evidence of my deteriorating gray matter...?

Tuesday Tales

Rebelling against Rebif this week for some reason. What up with that? Who am I rebelling against? The MS? My neuro? Committing to do the self injection tonight no matter what.

Added blondish, face-framing highlights to my hair. I think it looks pretty good and I needed a change. It might as well be true when everyone tells me I look SO good.

Stayed up too late watching TV and surfing online last night--I think it was after 1am by the time I crawled into bed. What up with that? Lack of sleep always kicks my a$$ the next day.

Trying my damnedest, apparently, to eat every single one of the freeze pops in the box of 100 I purchased last weekend. The kids haven't found them yet. I hope there are some left by the time they do or Ruby will certainly give me an earful. Sugar is not good for my mind, body, spirit so, again...what up?

Second to last grief group tonight. The leader said that we should exchange numbers to keep getting together on our own. Since I cry every time I enter the room with these people and many of them do the same, I'm not sure if I want to be meeting them monthly in a restaurant. The waitress would be very perplexed by all the crying and dark humor. Plus, I feel like they all pity me for the LITTLE they know of my life, my family, and the circumstances around my father's death. What if they knew about the MS and the drunken hospice behavior? Geesh!

Having a hard time focusing on work writing assignments lately which is really easy to do working from home. Is it just a matter of buckling down or is it cognitive issues? Aaaah. The never ender question of those of us with a disease that can affect any and all central nervous system functions. Is it MS?

Monday, June 01, 2009

Monday Morning Musings

When I am ready to date again (and it's been suggested that I am DEFINITELY NOT ready), how many dates would I get with an entirely truthful person ad?

Divorced, 44-year-old woman, single mother of 2 children who have never had shy or quiet days in their entire lives--a fact I really appreciate but can be overwhelming to strangers. I no longer drive a car due to vision loss caused by Multiple Sclerosis. MS is not the telethon disease but it is on the books as chronic and progressive. Although I don't live my life that way, there is a chance it could attack any and all parts of my central nervous system.  There's also a chance you could be hit by a bus and paralyzed, but I'm guessing a bookie would give you better odds than she/he would on my potential disability. 

I've been told that I am quite pretty and consider myself attractive, too, but my body definitely shows wear and tear and my ample butt and thighs have ruined any chance of  a career as a bathing suit model.  I wiggle and shake what I have pretty well, on and off the dance floor, but I haven't seen single digit women's sizes in a while.  You will think I am gorgeous and will not hesitate to tell me this every time you see me. And mean it. Stinginess with compliments is not acceptable. I will tell you how much I enjoy looking at, touching, and being with you so you will need to do the same.

I am a very responsive and passionate lover (nuf said) and an awesome kisser. God help your dignity if you kiss me in front of the aforementioned exuberant children, though. They will hoot, holler, and mimic their limited TV exposure to make-out sessions. Before you ever get a chance to kiss me in front of them, though, you will be put through your paces, probably for your first 10 times seeing them, which is part of the reason you will not meet them until we are an exclusive item.

I am an independent, formerly freakishly-strong feminist looking  for a life partner who I will not have to ask to carry heavy stuff. You will understand how difficult it is for me to ask for help and will have the ability to read my mind and insist that I can't move one end of a sleeper sofa all by myself.

I find most of life very funny and you should share my sometimes warped sense of humor. Laugh at my jokes and make me laugh at yours and your attractiveness improves exponentially. 

I am writing a book of non-fiction essays based on a blog and incidents from my real life. If you are in my life, you will be in my blog and my book.  I will TRY REALLY HARD to respect your privacy but you should pick your battles if you want me to consider NOT writing about something. I won't share YOUR business unless it's also my business.  Capice?

You must like or at least silently tolerate Counting Crows and understand that Adam Duritz is on my list of 5 people that I could sleep with if given the opportunity. I doubt I will ever get that opportunity since he likes size O models and I tend to act like an idiot around famous people, but you should know where I stand on this issue. Other than this fictitious list of five, I am almost pathologically faithful. I do not cheat or lie and expect the same honesty and fidelity in return.

I don't like to go out every night but I do like to get dressed up now and then (one or two times a month unless I'm on vacation) and go out like a grown-up. You should be able to dance or at least fake it really well in a way that does not involve rolling around on the floor in some self-choreographed break dancing routine.

You should consider yourself handsome even if you're not. Confidence is very attractive. You should be liberal or liberal leaning and vote/contribute/volunteer in a way that shows how much you care about what happens to those less fortunate in our nation and the world. You should have some sense of spirituality. You don't have to believe in any particular God, but you can't BE God, if you know what I mean. 

You should have a full set of teeth, real or fake so I will not dread your smile. You should not be shy when naked (nuf said). You don't have to be a GQ model or even wear a suit every day but you should clean up well for the occasional wedding, funeral, or other event where a suit is considered appropriate attire.  You should own the suit and it should not be made out of corduroy or have "leisure" in front of it.

You should read. Obviously you should KNOW HOW to read, but you should also choose to read books for pleasure or self-improvement. You should like or not actively dislike NPR since I like to listen to it in the morning.

What do you think? Too much? Is he out there somewhere and will he be ready when I'm finally ready? Or will I grow old alone, surrounded by cats who will eat my dead flesh, and bat my bones around for fun?