Monday, December 31, 2007

Resolutions for 2008

Ken went to pick up Matt at his cousin's house before midnight so I decided to log on and write my New Year's resolutions while I'm hanging out. In no particular order:

  1. Play more.
  2. Dance more.
  3. Make love more.
  4. Yell less.
  5. Rest more.
  6. Stress less.
  7. Go to bed earlier.
  8. Wake up earlier.
  9. Make to-do lists in one notebook only, remember where the to-do list is located, and check things off when they're done.
  10. Become the best employee I can be.
  11. Go to yoga once a week and do yoga once a week at home.
  12. Walk outside more.
  13. Pray and meditate more.
  14. Go to at least two meetings each week.
  15. Give up red meat.
  16. Give up artificial sweeteners (check!).
  17. Give up candy/cookies (so far so good today!)
  18. Eat less saturated fats.
  19. Eat more protein.
  20. Continue to write as much as possible.

Happy New Year!

Sunday, December 30, 2007

Cleaning Up

Wouldn't it be cool if you could look at a mess and think it away?

Saturday, December 29, 2007

Hanging Out

The Rebif arrived and no one stole the box from my lobby! Yay! I get to stick a needle in my belly tonight! Woo-hoo!

Kids and I are having a lazy day today, bringing laundry to the laundry room, writing letters to friends, and playing with Christmas toys. Zane just drew a picture of a big huge lollipop and asked me to write the following note to his friend Zachary M. who no longer goes to his child care center: "Dear Zachary M. Come, come, come back to school now. From Your Friend Zane." He folded it up into a triangular-ish lump and is looking for an envelope. Since we don't have Zachary's address, he told me that if I see his parents in a store I should ask them where they live. I didn't have the heart to tell him that I have absolutely no idea what Mr. or Mrs. M. look like.

Ruby is writing a letter to her friend Katie. Although Katie lives several states away, Ruby is asking her to call for a play date. I hope I don't have to drive her home.

I'm chit-chatting on and off with my MS Moms online group. So far, I've met a dental receptionist who lives nearby, a Christian cattle rancher/animal midwife from somewhere in the Midwest, a Wal-mart manager who was misdiagnosed with Lupus before getting the MS diagnosis, a grandmother with a new grandniece, and a young mom who is no longer able to work and trying to qualify for Social Security Disability. We are very different but share a common disease--the MonSter (a common nickname among people with MS).

Since I am still early on in the acceptance process, it's really helpful to talk to other people, especially other moms, who deal with MS and its unpredictability. I get to take what I like and leave the rest. I chat/post on other groups/sites, too, and they help me not feel so alone and different with this disease. I don't have to "buck up" with these people and they let me vent without fixing it, feeling sorry for me, or wishing I would hurry up and accept my disease. By being honest with other people about how I feel, I CAN move on. But I can't skip that step. Believe me, I've tried.

I found out that the walking blurry eye thing I've been experiencing is called Uthoff's Sign (exacerbated by heat and fatigue) and I think the bands around my arms (feels like they are being pulled tight around my biceps) is an isolated version of the "MS Hug" that many people struggle with. I think I'm going to try to rest a lot this weekend and then weigh how I feel on Monday before calling the neuro about possible steroids. I'm also trying to take the sinus meds every four hours because I'm sure this cold/sinus thing is not helping the MS symptoms and my be raising my temperature which is not good for MS either.

Back to coloring.

Friday, December 28, 2007

Waiting on Rebif

I'm writing while waiting on hold AGAIN to talk to my insurance company about my prescription for Rebif--my MS medication. I'm going to multitask with my blog since I can't do any real work when they keep coming back on the phone asking me questions every couple of minutes.

I started Rebif in October, getting my drugs from a mail-order pharmacy connected to the pharmaceutical company that makes the drug. Anyway, I was told that, after a month, if my neuro and I decided I was staying on the drug, I could get it from my insurance company with 3 months for the price of one. So, switching to the insurance company mail order pharmacy would save me $140 per year--not exactly chump change for a single mom. I have played telephone tag with the insurance company and the pharmacy arm of the insurance company going on three weeks now. I'm sure there has been a day or two or five of procrastination on my part during that time, but "what the heck?!" Managing my medical care, insurance, claims, etc. could be a full-time job and I already have two of those.

So, anyway, yesterday I decided that, because I only had one remaining syringe left (just call me Last Minute Lucy) I would call the insurance company again and stay on the phone until it was resolved and my medication delivery was scheduled. So, I did. I waited on hold and then discussed the issue with someone in Customer Service who insisted that I had to get the Rebif starter pack where I would be ramping up to the full dose. I explained to her, as I had explained to all the prior Customer Service reps, that I had already ramped up and that I was transferring my prescription for the full dose to the insurance company pharmacy to get a three month supply with each refill and save money. She put me on hold again, apparently searching around for the 90-day prescription that I had to have my neuro fax to them. Eureka! She found it and then transferred me to the delivery department who wanted to arrange delivery of a 30-day supply. I bit my tongue and explained to the kind gentleman that I needed a 90-day supply and I was put on hold again, for a REALLY, REALLY LONG TIME. My arms were hurting me a lot yesterday so it was taking a lot of energy to hold the cell phone up to my ear. I know that my cell phone has a speaker phone capability (which I randomly activate by accident from time to time). So, I pushed some buttons that I thought might turn on the speaker phone function but I must have pressed the mute button (that I didn't know I had and have no idea when I would use) by mistake. So, after waiting on hold for about 20 minutes, the delivery gentleman came back on the line and kept saying "Miss Baker? Miss Baker?" When I realized he could not hear me, I frantically pushed buttons trying to deactivate the mute function. No luck. So, after 30 seconds of not getting a response from me, he hung up. I screamed at the top of my lungs and decided to wait a day before calling back so I didn't rip into an underpaid and overworked customer service rep who happened to answer the phone.

So, here I am. It's a day later and I took my last dose of Rebif last night (I missed Monday by mistake so I did Tuesday, Thursday, and hopefully, Saturday this week). Guess what I'm doing right now. Yup. Waiting on hold. Chloe (I finally had the good sense to ask for a name from the third rep I've spoken to in the last 15 minutes ), just told me that perhaps I spoke to the Home Delivery arm of the insurance company versus the Speciality Pharmacy division where she works because she only has a 30-day prescription on file. So, I'm on hold again. So, apparently, without my insurance company's org chart, I can't get my prescription filled. Have I mentioned that I have NO INJECTIONS LEFT and that this is a disease modifying drug??????

OK. So, Chloe just came back on the phone with Adelia from the Home Delivery arm of the insurance company patched in. We are on a three-way call where one or the other keeps coming back on the line saying that my insurance doesn't cover a 90-day supply and that the Member Services rep I spoke with initially (last month, maybe?) must have been mistaken.

OK. Now, Adelia says they WILL cover a 90-day supply but I have to fill out paperwork to register. I asked her if the 90-day prescription is on file and she said she can't look it up until I register. So, I have to go to a website, download forms, fill them out, fax them to her and call on Monday to see if the prescription has been filed. THEN I have to wait 14 days to get the actual medication. I said no thank you and hung up.

So, now I'm on hold with the information operator to get the number of my local pharmacy to see if they carry Rebif. The pharmacy is ringing. The suspense is killing me.

No Rebif at Stop & Shop pharmacy. I'm calling Walgreens. Ugh. Walgreens has to special order it but they say they can get it on Monday. But, wait...oh...big surprise...when the pharmacist tried to submit a dummy claim for the Rebif with my insurance company, it didn't go through.

So, now I'm on hold with the first mail-order prescription company that has been sending me Rebif since October. They are overnighting it to arrive at my house tomorrow, so I will only be taking the dose a day late. Uh oh. Not so fast. They can't fill the prescription because the insurance company pharmacy has already submitted a claim so it's coming up that I am trying to refill the prescription too soon. I'm on hold again. Three way hold. A menage a hold. Hehe.

As soon as I get Chloe or some other rep from the insurance company on the phone I have to tell them to cancel the prescription so the other mail order pharmacy can fill it. I'm listing to country hold music. Sounds like a steel guitar. My foot is tapping. I don't generally like country but this isn't too bad. And, it's better than the "Due to heavy call volume, our customer services representatives are all taking care of other calls. We look forward to talking with you soon. Approximately wait time A GAZILLION MINUTES."

It's been reversed. Phew. Who knew I could be so happy to get a shot?

Thursday, December 27, 2007

The Walking Eye Thing Has a Name!

Dr. Pless called me back and, apparently, the trouble I am having with walking and seeing at the same time has a name! I can't remember what the name is but it happens to 10% of people with Optic Neuritis, which is what my presenting symptom was that led me to my MS Diagnosis. It's something sign, I think. He said if whatever this thing is doesn't clear up and if I'm still fatigued and have achy arms on Monday, I should call him to discuss possible IV steroids again. I should call sooner if it gets worse. It seems that IV steroids is the only possible treatment which kind of sucks. I told Dr. Pless that I wasn't sure if I haven't come out of my first relapse, if this is just the "new normal," or if I am having a second relapse. He said, "Those are all very intelligent questions that neurologists would love to have answers to....but we don't." Great. I'm smart but still in the dark. Maybe I should go to acupuncture or Reiki this week.

My eyes and arms

My eyes have been bothering me for about a week and my arms for a few days. I called the neuro last week and didn't realize I got a call back. By the time I heard the call back message, it was Friday and with Christmas coming, I decided I didn't really have time to deal with it anyway. So I didn't call back until this morning. I described my symptoms to the secretary and I'm waiting for a call back from Dr. Pless. I feel like I'm making a big deal out of nothing or maybe I'm not making a big enough deal out of something. I don't like the ambiguity of this disease. I'm wicked tired, like bone tired, could curl up on my office floor tired, first trimester of pregnancy kind of tired. (I am absolutely, positively not pregnant, by the way.) I slept 9 hours last night and I've had three cups of coffee so far and I'm still tired.

I want a plastic pop up turkey timer thing to poke out of my navel when I'm having a relapse. It could play a song like, "Doctor, Doctor, Give me the News, I gotta bad case of MS blues" when it pops up to tell me it's time to call the doctor. Then, when I call, I don't have to try to describe how my eyes don't work as well when I walk and that I used to be freakishly strong but now a 2-liter bottle of soda feels heavy. I could just say, "My timer popped up!" and the neuro would tell me what to do to "reset my timer."

Wednesday, December 26, 2007


I went to Connecticut with Ken and the kids today to visit my good friend, Laura, and have a holiday celebration with my dad, my grandmother, my uncle, my sister, my brother-in-law, his parents, and my nieces.

It was a nice day BUT....all the way home I stewed and stewed and replayed insensitive comments from my family about my MS. I heard "It's mind over matter," "Well, MS, isn't so bad. They can control it now," and my personal favorite, "I know someone with MS and he works a physical job and he's fine so you have a choice about whether or not it defines you." Anyway, Ken, bless his heart, listened to me gripe and groan all the way home and repeat my favorite dysfunctional family coping phrase, "You can't go to a hardware store for bread" over and over again.

And then, I came home, played with the kids, got them into bed, and read the lovely email below, which my friend Laura sent to me.

I am very, very fortunate and very, very grateful for too many things to remember or list right now. Ruby and Zane are true blessings in my life and reminders that I must be the best "me" I can be every day. I am clean, sober, and don't smoke today, and I have faith--in a higher power, the universe, and myself. I have a wonderful man to love who loves me back and gives me passion and respect. I have a job that challenges me and allows me to be creative. I have health insurance and live in a country and a city where I have access to the best medical care. I have fabulous friends who hold me up and allow me to see their vulnerabilities and support them when they need it, too. I have a roof over my head and money to put food on the table and gas in my car. I have a car. I speak to and have relationships with almost every living member of my family and I (mostly) accept them for who they are and what they have to give (versus what they don't) and (mostly) show them the real me. I am writing. I am writing A BOOK.

Tuesday, December 25, 2007

Ho Ho Ho!

The kids got up at 6:15 this morning and convinced me to let them go out to open stockings and presents at about 6:18. I was exhausted but seeing their excitement and joy energized me.

After they tore up the living room, I tried to make gingerbread women-shaped pancakes. Although it was an aesthetic failure, they tasted yummy and the kids and I ate up the entire batch in our jammies.

John came by to get the kids at noontime. Ruby was dressed in a bunch of mismatched but incredibly colorful new clothes and Zane wore his Scooby Do Christmas shirt. Ruby brought a bag of her gifts to his house, including an electronic Sudoku game Ken gave her and a manicure station from me. (Apparently those were her top two gifts this year--It's so hard to know which ones are going to be the big hits and which ones will be duds.) Zane took his new Superman figure and a huge Rescue Heroes truck I gave him.. He insisted on rolling it all the way out to John's car.

I wanted to go to the Alcathon today. I wanted to go for a walk. I still might but it's now almost 2:30 and I'm stuck to the couch like Velcro. The kids won't be home until 7pm. Maybe I'll make a goal of getting up at 3:30...or 4:00...or maybe even 5:00. I'm lazy but quite peaceful and happy in my lassitude. Happy Lazy Christmas.

Monday, December 24, 2007

'Twas the Night Before Christmas...

...and all through the condo, the children aren't sleeping, and my to-do list is mondo! I've gotta chew and spit carrots left for reindeer outside and eat Santa's gingerbread cookies 'til I'm pretty darn wide. My arms are hurting and I wish the wrapping elves would arrive. It's MS Med Monday, the needle will go in my thigh. All the whining aside, I'm very grateful tonight to have Ruby and Zane and my blog to write.

Merry Merry.

Sunday, December 23, 2007

2 wake ups until Christmas!

Ruby, Zane, and I watched Elmo's Christmas Countdown on regular TV tonight and ate microwave popcorn. We loved all the guest performers and the songs. We talked about how unfair it is to have toy commercials on TV to any thoughts in their heads that they are getting Tickle Me Elmo or any of the other stuff they saw in the commercials.)

They are so sheltered at my house with mostly watching PBS Kids and Noggin. I wish I could shield them from the evils of advertising forever, but that's not possible...or probably even a good thing. Advertising is part of our world. I work in marketing, for cryin' out loud which means I am dependent upon that fact. I even BUY advertising (although I can feel somewhat morally superior since we are "selling" a helpful service and not trendy, plastic toys that may have been built by children who are working for less than a living wage in another country.)

They are blessed, my children. And I am blessed to have them here with me, safe and warm in their beds, perhaps with visions of sugar plums dancing in their heads. Ruby's head is no doubt warm since she fell asleep in her Santa hat again. Happy Christmas Eve Eve!

Saturday, December 22, 2007

Lazy Christmas Crafts

My holiday gift to all of you:

Can you tell I'm having a lazy day on the couch with my laptop? The kids went with John this morning, I did an hour of shopping, and I'm been on the couch since then, resting up to go to my meeting and to Ken's tonight. Embrace the lazy! Lay down before MS knocks me down!

Wet Your Pants Video

I don't know if it's my mood or what, but I found this video absolutely hysterical! Tears were literally streaming down my face.

What MS Is Like

Another good public service advertising campaign:

Friday, December 21, 2007

Corresponding with My Mother

I received a letter from my mother tonight. It was typed, three sentences long, and signed "Your mother."

I sent a response via email that I may regret posting here in its entirety but I'm in kind of a brutally honest mood so what the he#%%. (Plus, I've heard that some people read my blog like a soap opera, and leaving out the details would dilute the drama, don't you think? I don't want to disappoint my loyal readers.)

Dear Mom (You signed your letter "Your Mother" but I decided to call you by
the name I've used all my life).

I received your letter today and then got your email address from Norman. I decided I would rather email you than send a response letter via snail mail. I'm afraid if I wait to respond too long, I will lose my nerve and/or my ability to be

Laurie "warned" me that you asked John for my address so I would probably be getting a letter. I surprised myself by running to the mailbox each day expectantly, with fear and anticipation. You would think that, after almost 20 years of no contact with you, I would have learned to NOT expect anything. But I did. I'm trying to forgive myself. I mean, do people ever really stop being someone's child and having a child's expectations that their parents will love them unconditionally? I hope that my children always expect me to love them, no matter what. I hope and intend to never disappoint them.

I had a friend on the phone when I opened and read your letter. I was afraid that you would take responsibility for your role in our dysfunctional family and apologize and then I would be forced to consider forgiving you and having you in my life which scared the crap out of me. I was afraid it would be this incredibly emotional, sad letter and that it would unearth lots of sadness in me and make me question my memories of you and our relationship and, perhaps, my sanity. I worried that you might want to have my children in your life and that we would have to take it slow so I could be sure that they would not be hurt.

I needn't have worried. In your letter you managed to apologize and place all the blame on my dad in only three sentences. Three, typed sentences in nearly 20 years.

I can not and will not speak for Laurie but I know that she saw your conversation differently than you did. In your letter you said that, until you talked to Laurie, you "had no idea that [abuse and threatening behavior] had happened." Really? So, when you pulled my father off of me when he was beating me when I was 13, did you think that was something other than abuse? When you came in my room after one particularly violent incident to ask if I was ok and to tell me that my father felt really bad, what exactly were you worried about if there was no abuse? And, when you broke plates over my head in our kitchen when I was 14, was that something other than abuse? And, when you left us with my then violent and actively alcoholic father
when I was 15 (letting us know you had moved out with a note), did you think we
were safe?

I told you how bad it was when he finally hit me and threatened me one too many times and I called you to come get me. You "welcomed" me into your friend's home where I stayed on the couch, severely depressed and you sent me to a therapist, remember? By then, my own alcoholism and addiction had kicked in so I was all set with "coping" mechanisms and was not open to therapy. All I remember about that therapy experience was that I went stoned to the few appointments I kept. I think his name may have been Mr. Johnson.

I underestimate the power of denial, I guess. I also overestimate the power of the 12 steps and a person's faith in a higher power. I know that you believe in God and read books about improving your life and relationships (I saw some at Tom and Zita's house). How do you fit your relationships with Laurie and me into that mission/belief system? How do you explain, to yourself and others why it is that you haven't spoken to me in so long? And, when Laurie and you broke off your relationship, did you wonder what was up and why this had happened again?

In your conversation with Laurie and your letter, you acted as if you had just received new information to illuminate a mystery that you didn't even know existed. I wonder...why did you think you didn't have your daughters in your life? What did you tell yourself? That we were just crazy and bitter? That you were somehow a victim of our misdirected anger and pain? Did you think you were a good mother?

I worry sometimes about what kind of mother I am. When I yell at my children (who you do not know which is why I don't mention them by name), I worry that I am like you. Although your letter saddened me by reinforcing the truth that I
didn't have and don't have the mother I needed, I'm grateful, too. It confirmed for me that I am a very different mother than you. Although I make mistakes, my children are allowed to be who they are. I tell them I love them multiple times a day, apologize when I'm wrong, give them lots of affection as well as permission to be angry at me (although not disrespectful or violent). Most of all, I make sure that they know I am here for them, forever, no matter what.

I take responsibility for my piece in all my relationships. Which is why I'm writing to you now. My piece in my dysfunctional relationship with you is my silence. I am 43
years old. You are not the cause of anything good or bad in my life anymore. I take responsibility for my choices, my attitude, and my behavior. I don't blame you anymore.

I did a 4th step a few years ago where I focused on the positive things you gave me. There were many: a love of books and the library, intelligence, creativity, just to name a few. Thank you for those things.

The list of what I didn't get is so much longer, though. Which is very sad. I can't go back and neither can you. But I will not be silent while you try to paint a picture that wasn't true. I live in the truth today. The truth is: You probably did the best you could but it wasn't good enough. Your mother was missing some important tools so you didn't have much of a role model. You married a very sick man but you were very sick, too. He hurt us, physically and emotionally, but so did you. He was
the alcoholic (still is, although dry/sober today) but, as his wife, you suffered from the disease of alcoholism as well. Untreated alcoholism. And it was not cured when you left him.

I used to think I cut my dad slack because, like him, I am an alcoholic and an
addict. Over the years, I've realized that's not true. I have forgiven him because HE ASKED FOR IT. I have prayed and written and cried about my inability to forgive you for SO LONG. A few years ago, I finally realized that I had to forgive myself for hating you and letting that hatred hurt me. I couldn't focus on forgiving you because YOU NEVER ASKED FOR IT. Dad shows up in my life. He calls, writes, talks about the past and his role in it, apologizes, tells me he loves me, and does what he can
to show it to me and my family. I will not let you demonize him. He sucked as a father for sure. He drank, he drugged, he beat you, and he beat and threatened us. But YOU were not drinking and you allowed it all. You were not drinking and you hit and threatened us, too. And, most importantly, he has changed and made amends and continues to make amends. You have not.

You asked Laurie what she wanted from you. Although you didn't ask me the same question in your letter, I'm going to answer it anyway. What I want from you is for you to read this and know my truth. I want you to know that my childhood was not what it should have been because BOTH my parents did not do their jobs as they
should have. I am a good person today. I have issues and challenges and I am not perfect, for sure. I blame you for NONE OF THAT. I take responsibility for my successes and my failures today. You have lost out by not having me in your life.

Since becoming a mother, I have understood you more and less at the same time. I can't understand how you can carry and give birth to a baby and then reject her. I can understand how you lost your temper and felt overwhelmed by an alcoholic family and four children. I can't understand how you did not protect us from abuse. I can understand how a rebellious child can push your buttons and try your last nerve, but I can't imagine cutting her out of your life and threatening to send her back to her abusive father. I can't understand how you put conditions on your love for your children. I can understand wanting to be selfish sometimes and take care of yourself but I can't understand how you put your husband and later yourself before your children's well-being, especially when we were young. I can understand losing your temper and yelling. I can't understand hitting, name-calling, and making us feel like we were defective. I can understand making mistakes. I can't understand not accepting responsibility for them and doing what you can to fix them or prevent them from happening in the future. I can't understand not apologizing or asking for forgiveness when you have so clearly screwed up.

May you be well and at peace this holiday season. I wish you nothing but the best...the same things I wish for myself. This letter is part of making that happen for me. I'm tired of being afraid of telling you the truth. I'm done hating you but I am done being silent, too.

I went back to edit this letter and realized I didn't want it to be "perfect" because I'm not and my feelings about you are very complex and messy, like this letter. I've been redundant, contradictory at times, possibly grammatically incorrect, and overly verbose, but I've definitely been truthful.


Julie, Your Daughter

4 Days 'Til Christmas!

Ruby and Zane count the days until Christmas which I absolutely love. Well, Ruby counts. Zane says, "The next day, then the next day, then the next day, then the next day?" which basically amounts to the same thing. I love their excitement about Santa and seeing friends and family. They make me love Christmas.

Today was a better day although I'm pretty sure I am either having a relapse or I'm still in my first one and it's getting worse. It hurts when I have to lift my arms for any reason (e.g., sliding the shower curtain open). It's not just my armpits anymore. It hurts from my shoulders all the way down to my biceps. I'm typing while laying down on the couch with my laptop on a pillow on my lap so my arms are barely lifting off the keyboard. The kids are watching Fetch until bath time.

I'm also still having the vision trouble while walking. I'm fine sitting still or driving but when I try to maneuver around a store or in a crowd, I can't see very well. It's like my brain can't navigate walking and seeing at the same time. I went to Building 19 this morning before my afternoon of working at home, and it took me twice as long as usual to get through the store. It's disorienting and I feel bad when I bump into someone or get in someone's way. I think about the woman in TJ Maxx with the white cane with the red tip on the end. I don't WANT to be blind, but I wish that people could see that I'm having trouble with my vision. I feel like my symptoms are invisible to everyone but me which is kind of crazy-making.

I'm reading a book called MS and Your Feelings that's written by a therapist who has MS. It's really good. It's kind of like a 4th step inventory guide for dealing with MS. After reading the first chapter, I know that I am FAR from total acceptance of my illness. It is still such a huge part of my life, my thinking, my conversations, and obviously, my writing. According to this author (and I tend to agree), acceptance will mean that MS is integrated into my life and not taking it over. I will be able to live in the day, making adjustments for how my illness affects me right now but not worrying about the future. I will simply trust that I will be able to adapt to changes if and when they come.

I know, with all my heart and soul, that I am going to be ok. I believe that because I have gone through a lot of different periods in my life when I was terrified about something and I was always ok. The really, really hard part is adapting that trust to my day-to-day fears. Yes, I will be ok in the long run. But how do I fend off anxiety today about how, when, and in what way things are going to work out? I let go of the big picture but I hang on to the details for dear life.

I heard someone say recently, "Let go or be dragged." I really don't need any more rug burns on my psyche. So how do I let go? I'm praying a lot and putting things in my "God Box" (made from a tin that used to hold French chocolates) so it should start working any day now, I guess. Practice, practice, practice.

Thursday, December 20, 2007

A Very Long Day and a Possible Relapse

You know how you are really, really happy when some days come to an end? Well, this is one of those days.

Here are the highlights/lowlights with the good stuff (there is ALWAYS good stuff) mixed in:

- I had insomnia in the wee hours and was up from about 1:30 - 4:00 a.m.

+ I woke up pretty much right away when my alarm went off at 6:15 a.m.

- The kids did not wake up right away when I tried to wake them up at 7:00 a.m.

- Zane was less than thrilled when I announced that it was a cereal morning and, after a 20-minute tantrum, insisted on eating string cheese instead (which I let him eat because he got it out of the refrigerator himself and Ruby opened it for him while I blow dried my hair).

- I forgot to pull my wipers off the windshield last night so the motor burned out because they were frozen to the glass when I turned the wipers on. Oh. It was snowing wet snow this morning so I kind of needed the wipers.

- I skidded out of the parking lot (have I mentioned that the Volvo SUCKS in the snow?) and dropped Ruby at the before-school program. I wanted to drop her at 8:00 a.m. and it was about 8:30, so I was a little stressed out.

- I got to Zane's child care center and, after several tries, I couldn't make it up the driveway. (Have I mentioned that the Volvo REALLY SUCKS in the snow?) It was now about 8:45, so I was really stressed out. I still had to drop my car at the garage, meet Ken, get a ride to the train, take the train all the way to Harvard Square, and take the shuttle to work for a 10:00 a.m. meeting.

- After I dropped Zane off and was halfway to the garage in tons of traffic with the snow coming down harder and wetter and no wipers, I saw that I missed a call on my cell. It was Ruby's before-school program director, saying that Ruby left her backpack on the backseat. I looked in the backseat and there was no backpack. I called the program director who put Ruby on the phone. When I yelled "There is no backpack on the back seat, WHERE IS YOUR BACKPACK, RUBY???!!!!" she told me that she could have left it at home. I yelled again and hung up. Then, I called Ken, told him what happened and that I wouldn't be ready for him to meet me at the garage for a while longer. Then, I turned around and headed back toward home.

- The route I chose to go home includes a hill. I knew it was coming so I shifted down to low (a gear I only discovered during the last snowstorm when I couldn't get out of my parking lot). It worked! I was ALMOST to the top of the hill when a minivan came skidding over the top down toward me sliding all over the road in the snow. So, I had no choice--if I didn't want the minivan to hit me, I had to back down the hill. Which I did...right into a snowbank. Every time I tried to get out, my wheels just kept spinning. A man waited for me to go and, because I was angry and embarrassed, I waved him on, not realizing that I was blocking his way. He told me to "Relax!" which really pushed my buttons (John used to say "Relax" whenever I got angry). Then Mr. Relax asked me if I wanted help. I said, "No thank you!" and tried, unsuccessfully to get out of the snowbank. After about 5 full minutes, I was sweating in my coat, still stuck, and still blocking the road so the several cars that were waiting couldn't get by me. Despite my protestations, Mr. Relax got out of his car and pushed me out. When I apologized for yelling at him and told him that I had had a bad morning, he suggested I go back the way I came instead of trying the hill again.

+ I heeded his warning, made it back home, parked in the fire lane, ran in, and found the backpack just inside the door. I drove back to Ruby's school, gave her the backpack, told her I loved her, and apologized for yelling at her. I told her that everyone makes mistakes and I wasn't really mad at her for forgetting the backpack. I was just mad at myself for getting stuck and running late.

- By the time I got to the garage, Ken was waiting, but it was already 9:30 a.m. I called work and left messages saying that I probably wouldn't make it to the 10:00 a.m. meeting.

+ I got to kiss Ken in the morning--a rare treat.

- By the time my train got to Harvard Square, it was already 10:30 a.m. and I went out the wrong exit from the train storm so I had to walk in the rain/snow all the way through the Square to the shuttle bus stop. The shuttle was waiting but couldn't leave for 10 minutes.

- By the time I got to work, it was almost 11:00 a.m. and I had completely missed the meeting. Not a good career move after a bad review.

- A meeting I thought was scheduled for 3:00 p.m. was actually at 11:30 a.m. and I only discovered the mix-up 15 minutes before the outside visitors arrived for the meeting. AND my boss, who was supposed to join us for the meeting, was not available at 11:30.

+ The meeting went very well. I like the agency reps a lot and can't wait to see the sample treatments they will deliver in a couple weeks for a direct mail piece we're doing.

- I had a post-review, "performance improvement action plan meeting" (or something like that) with my boss and her boss. It was painful to revisit the weaknesses that showed up in my bad review and scary to imagine what the consequences if I can't improve my performance. I want to, and I said that, but I'm scared that I won't be able to.

- Ruby's holiday concert was at 2:00 p.m. today and I missed it.

+/- When John found out that I arranged to have Ken go to Ruby's concert, he was suddenly able to get off of work to go. I gave Ruby the option to have Ken and Daddy or just Daddy. First she said Ken and Daddy and then she changed her mind and said just Daddy. But the good news is that Ruby had a parent at her concert.

- I had to wait 20 minutes for a shuttle to take me from work back to Harvard Square to take the train home. It was snowing really hard and the roads were bad so it took us about a half hour to get there. I called John to tell him that I might not be home when he was scheduled to drop off the kids at 7:15.

+ When I got to the train station after 7:15 p.m., Ken was waiting for me in a nice warm car, with a nice warm kiss. He took me to the garage and I picked up my car which had a new headlight and working wipers. Yay!

- I made it home just before the kids at about 7:45 p.m. It was later than usual so the kids were overtired and wired getting ready for bed. Zane had a meltdown where he refused to let me put on his jammies, but wouldn't put them on himself.

+ I successfully ignored Zane's tantrum and got into bed with Ruby and the Ten Rubber Ducks by Eric Carle. Zane eventually donned his jammies and sat with us for reading the first story and a Curious George lift-the-flap book.

And here I am, at the end of my day. Tired...bone tired. Some might even say "fatigued" which is an MS word. I think of it as FAT tired.

On the drive from the train station, I told Ken that I thought I might be having another exacerbation because my eyes are not great when I'm in motion, my legs feel heavy and stiff, and it feels like someone is squeezing my armpits really hard. Ken had an interesting response. He said, "Has your first exacerbation really ended?" and then he pointed out different times over the last few months when I saw sparkly lights on the TV, felt stiff legs, had headaches, etc.

I talked to Liz yesterday about how I'm having eyesight trouble while walking and she suggested I call the neurologist. The neurologist told me to call if I had new or more serious symptoms that lasted more than 24 hours. Liz pointed out that my eyesight issues and fatigue fit the bill. So I called. But they haven't called back! I left a message yesterday saying that I was having some eye trouble again and wondered if I should be seen or do anything. So, I wait. I may try to call again tomorrow.

So, maybe I'm relapsing. Or maybe my relapse never went away. Or maybe I'm just tired or having symptoms because I have a cold. One things is for sure: This day is over and I'm going to bed. Nighty night.

Wednesday, December 19, 2007

Compassion vs. Pity

There's a fine line between compassion and pity. Since I've been the recipient of both since being diagnosed with MS, I feel somewhat qualified to describe the difference...or at least try.

Compassion is caring about another person. Pity is feeling sorry for that person.

Compassion is calling, emailing, or asking the person face-to-face how she's feeling in a genuine, NORMAL way like you always asked her before. Pity is avoiding calling or emailing that person because you have no idea what to say (and are afraid to say THAT) and when you see the person, hugging her too long (even if you never hug her), and squeezing her arm while saying, "How ARE you?" with that look like you just saw a dead baby bird in the road.

Compassion is not forgetting that the person is your friend just as much as you are hers and not being afraid to talk about your own experiences, hopes, dreams, sadness, etc. Pity is making the person feel like any and all conversations must focus on her and THE ILLNESS.

Compassion is asking about THE ILLNESS and listening to the answer without trying to "fix it." Pity is changing the subject whenever THE ILLNESS is brought up because you feel so horrible about it and don't know how to "fix it."

Compassion is asking how you can help and helping when you can. Pity is assuming the person needs help without asking or insisting that even though the person told you what she needed or did not need, that she must be wrong and you know best and helping in ways she does not need/want.

Compassion is thinking of the person as a complex human being with challenges and strengths. Pity is thinking of the person as "Poor [insert name here]."

Compassion is not being afraid to laugh at THE ILLNESS when the person is the one pointing out the humor. Pity is being horrified when the person laughs at her own ILLNESS.

Compassion is letting the person whine when she needs to, but encouraging her when she's ready to focus on the positive. Pity is letting her whine forever and validating her belief that her life is worse than the parent of a child with cancer, one of the lost boys of the Sudan, an Iraqi orphan begging on the street, a person with advanced HIV/AIDS, or a Hurricane Katrina victim.

Compassion is looking for the ways that you and the other person are alike. Pity is looking at the ways you're different.

Tuesday, December 18, 2007

My Very Fun Cold

As I wrote in one of my MS rooms recently, "I have a GD cold, for cryin' out loud. It's not like I have something SERIOUS like...oh...I don't know...Multiple Sclerosis. Oh, but wait! I do have Multiple Sclerosis...and a cold.

My nose is running and it hurts to swallow. Big deal. I saw a women on Discovery Health last night (my guilty pleasure) who had no legs. They were amputated as high as they could possibly be (just under hips) because of a disorder she was born with. She had a child, got around on a skateboard, had a job, etc. THAT is challenging. Chapped nostrils are child's play in comparison.

I just found out that my meeting was cancelled for tonight. I'd like to go home but I already confirmed with Abby that she is babysitting and I'm sure she needs the money. I will probably go to another, much needed meeting, or finish my X-mas shopping, or both. Then, I will come home and crash. Hard. Just for a little bit, though, because Ken has a babysitter (his daughter who is home from college) so he's coming over. It's hard when I miss him, want to see him, but feel like I HAVE to see him when I don't want to see ANYONE. I could say "no" again but then I won't get to see him until Saturday night. I miss him.

I long for a simpler time in my life sometimes when I'm trying to schedule intimacy around babysitters, work and visitation schedules, etc. Was there ever such a time? And, why am I bemoaning my life? Wasn't this what I wished for? I wanted children. They were and are chosen and wanted. I wanted to be divorced. I was done with my marriage prayed for the courage to leave it. I wanted to date a wonderful, sexy man who treats me well and I do. I wanted to be Ken's girlfriend and have him be my boyfriend which we are. It's all stuff of my choosing but sometimes it feels like "how did I GET here?"

My friend Rachel came to Gingerbread Women in Pants. (She says she came last year and I have absolutely no recollection of that which scares the crap out of me in the "am I slipping cognitively?" sort of way.) I've known Rachel since I was about 21 and she was 18, I think Seeing her and talking about silly college experiences made me feel old...well, not exactly old, just REALLY DISTANT from that girl who had to be pushed across town in an orange VW rabbit that didn't run, produced lots of white smoke anyway, and didn't have plates or insurance. I'm happy to be driving a car that runs today--although it still only has one headlight thanks to my over-committed mechanic. (He's supposed to replace it on Thursday but he isn't sure he can get me the car back in the same day. What the????? I could probably replace the headlight in a day!)

I'm happy to MOSTLY be able to pay my bills. I'm happy to have a job where I don't have to wear a uniform and men don't harass me. I'm happy I don't smell like restaurant food at the end of the night. I was younger and free back then but I also didn't have Ruby and Zane and all the other wonderful things I now have in my life.

I AM grateful...BUT.....NO BUTS!!!!!!!!!!!!!!!!! I truly AM grateful...AND...I need to figure out how to have more fun in my life. So, I have MS. I can still have fun. So, I'm a single parent, I can still have fun and I have two beautiful children to have fun with me. So, my boyfriend is a single parent, too, and we have to "schedule" alone time. At least I'm enjoying that alone time when we get to have it.

I have to miss Ruby's holiday concert on Thursday because it was rescheduled for a time that I will be 30 miles away in a long-awaited meeting at work. I can't reschedule the meeting because my boss is about to go on maternity leave. She is adopting the cutest little boy from Guatemala. From photos, I could see he has those luscious, chubby thighs that I love on babies! I just want to squeeze them. Why, I wonder, do I love meaty thighs on a baby but hate them so much on myself? But I digress.

Anyway, I asked John to be the parent at the concert and he said he can't go either. Ken said he can go (which is FABULOUS--Please God let him be on time!), but I still feel guilty. I feel like I am a boring mom with no fun in my life and I'm not even a very good mom at that. Wa-wa-wa-wa.

NOT TRUE, Mean Voice in My Head. I am a fine mother with a lot on my plate right now and I made arrangement to not have to work last Thursday afternoon when the concert was originally supposed to happen. I can't help that there was a blizzard and the concert was rescheduled! Although Ruby will definitely NOT understand, I will ask Ken to take pictures and I will buy flowers for him to give to her from me.

Plus, I do have fun. How many people whoop it up with other women molding nudes out of gingerbread dough?! How many people are actively writing a book? How many people hand paint a white minivan and invite their children to do the same? How many people tattoo Dr. Seuss' One fish, two fish, red fish, blue fish" on their widening lower back? I'm fun God Da&&IT! I'm a barrel of fricken laughs.

Sunday, December 16, 2007


My 11th Annual Gingerbread Women in Pants Party yesterday was a rousing success...although I missed a lot of "regulars" who were busy with other responsibilities or caring for sick children. In all, there were about 20 of us counting women and children. We produced massive amounts of nude and clothed gingerbread women and girls and, for the first time, thanks to Libby's teenage daughter Ola, a transgender Gingerbread Person. She/he was GORGEOUS. I will upload photos as soon as my computer-avoiding cousin Karen sends them to me.

Ruby, Zane, and I had a lot of fun and loved seeing everyone. The party and the clean up used up all of my spoons for the day (and I didn't really finish all the clean up yet) so I didn't have energy to do my usual solitary decorating after all the guests left and the kids were in bed. Instead, I put all the undecorated women away for another night of solitary decorating. I also said "no" to a visit from Ken. I'm actually quite proud of my self discipline and boundary setting.

It's a good thing I set the boundaries. I got into bed at 8pm with some silly TV Christmas movie starring Ben Afflek and Christina Applegate and started feeling pain in the back of my throat. I heated up some leftover cider from the party to calm my throat but, by the time the movie was over, I had a stuffy nose and a really sore throat.

This morning, in addition to discovering that the fingertips on my left hand were permanently stained green from cookie decorating gel, I realized I was sick. Heavy bones, burning throat, sneezing and coughing sick. Ugh.

I wanted to go play in the snow outside but I'm afraid it's a jammy day. The kids ate frozen waffles and apples for breakfast and are enjoying the non-stop PBS Kids lineup. I am laying on the couch with my laptop and a tall glass of juice. Gotta go. Cyberchase is on and it's the Flying Parallinis episode.

Thursday, December 13, 2007

Snow Day

I worked from home today so I could go to Ruby's holiday concert this afternoon. The dented Volvo is still not fixed and Ken needed his car back so I decided to walk to Ruby's school. In a blizzard. With the snow blowing in my face. I was dressed for the weather so it wasn't too, too bad. I got there in plenty of time to get a front row seat, per Ruby's request. One problem. The concert was canceled and they decided to release the kids early. Another problem. I had no car.

I called Ken and he said he would come and get Ruby and me, pick up Zane, and take us all home. (I thought about having Ken take me to my Volvo but decided I didn't feel safe driving in this weather. ) So great. Ken to the rescue, all the kids and I are safe and warm at home.

We get home, have a snack, watch a little PBS Kids and then I get a call from Peapod saying that, due to the inclement weather, my groceries will not be delivered tonight. Fabulous. We're home, with no car and no groceries. When they will be delivered, they do not know.

Then, John, who did not leave work even a minute early in preparation for this blizzard that they've been predicting for the last week, calls to say he won't be able to pick up the kids for dinner but that he will "stop by." He tells them this. Zane cries for a few minutes but then moves on.

So, I start to make dinner with no groceries. I make a concoction of green beans, Ramen noodles, and shrimp. Pretty darn good considering it came out of a pantry with no groceries. Ruby starts whining about how she doesn't like shrimp. In the middle of my cooking, John calls again to say he hasn't moved a mile and that he won't be coming by at all. Zane is beside himself. I feel his pain but why am the I one dealing with the forlorn whining and crying and yelling of "Daddy?" Because I'm the mommy, that's why.

So, Zane is screaming, Ruby is whining, and dinner is ready. Eventually, magically, everyone is at the table, Zane still sniffling, and Ruby still whining. I make the kind of deal a mommy only makes on a snowy weeknight when she has nothing left in her back of tricks and no one intended to be home in the first place. (They were supposed to have dinner with John and then hang with a babysitter while I went to my work holiday party that was also canceled due to the weather.) I told Zane if he stopped crying and told Ruby that is she ate just one shrimp, that they could watch a movie during dinner--something they never get to do. So, they are eating and watching Robin Hood on Toon Disney and I am on the couch finishing today's blog update. All is well in the world.

An aside about MS in the snow: I think it must be even harder than the heat of summer for people with balance issues and foot drop. I am pleased to report that I did not fall once today.

Wednesday, December 12, 2007


I NOT ONLY FOUND THE MAILROOM THIS AFTERNOON BUT I DISCOVERED WHY I GOT LOST LAST TIME! They put up a wall where there was not one before. Literally. I used to know where to turn to go to the mailroom because I looked through a doorway and SAW the mailroom door. That doorway is gone. Phew.

Hmmm. So I guess I didn't need to buy every book I could find on dealing with the cognitive issues of MS. Although I do love the title of the one I just got in the mail from Amazon today: Phone in the Fridge: 5 Years with MS.

Tuesday, December 11, 2007

Tin Man Legs

Imagine you are the Tin Man in the Wizard of Oz and that your knees need oil. Got it? Now, imagine how stiffly your legs move when you walk. Ok? That's how my legs feel right now. I don't think I am actually walking any differently than I normally do, but my legs feel creaky and in need of lubrication.

And, now, the $50,000 question: Is it MS?

Considering the fact that I stayed up until 3am last night, I'm guessing yes.

I wrote an article I'm afraid is sh&# about the aging workforce. (I hate that feeling of submitting something and being convinced that the person is going to come back to you and say, "Ya. This sucks!" and look at you like they can't believe you are allowed to keep your job.)

I am not a member of the group that I was writing about. I believe I am considered Generation X, by birth and factoring in the year I graduated from college. I am not a "nearing retirement age Baby Boomer." But today...I kind of wish I was.

Monday, December 10, 2007

I love this!

I found this on an MS community site and I love it:

Who are the people with Multiple Sclerosis?
by Virginia Sanchez

We are your parents, your children, your brothers and sisters; we are the person down the street; we are that lady or fellow who may walk a little 'funny' at the grocery store. We are the people that you "tsk, tsk" over because we might look "too good" to use a handicapped parking space. We are the folks who may not be able to get out to the Church or Temple every weekend; we are your peers; we are human beings.

We are the face of Multiple Sclerosis. A face that is nearly every ethnicity; that comes from nearly every country, that does not discriminate by social standing or class or financial or educational background or language or religion. We are both able to walk unassisted and use canes and walkers and wheelchair users; we jog and swim and partake in sports; we are housebound, we use scooters; we need respirators. We are everything in between. We are visually impaired and we are not. We are at every level of physical ability.

Of course, we "look so good" while we're doing it. We hear that phrase every day of our lives. Sometimes that phrase is meant as a compliment and sometimes it is meant to hurt or meant to shame us into doing something of which we may not be currently capable. We may be able to do that something tomorrow, though, or next week; Multiple Sclerosis is like that. We are like that.

Some of us are hearing impaired; yet all of us occasionally have people talk louder to us. "HOW ARE YOU D-O-I-N-G????" they'll scream, speaking to us as though we were either hearing or intellectually impaired. "YOU LOOK SO G-O-O-D!!!!"

Of course we do. Thank you very much. We are, in fact, the very best looking people in the handicapped community. We have secret beauty pageants every year, to decide which of our number is the absolute best-looking. Billy Crystal emcees, as his character Fernando; "..and you look MAHVELOUS my dear; absolutely M-A-H-V-E-L-O-U-S..."

We are brave. We are fragile. We want to live, and we want to end it all. We look for support and we want to stand alone. We are Everyperson. We are the People with Multiple Sclerosis. We are People, Just Like You....

Just Another Manic Monday

Zane has a croupy cough so I'm working at home today. He is snuggled up in the chair and a half with a blanket, a pencil, and his "diary." He's explaining to me how bugs with no arms and legs are under your bed. I hope he's wrong. Back to work.

Sunday, December 09, 2007

Sunday Night Serenity

I'm watching The Amazing Race, my favorite reality show, writing in my blog/book, looking at our Christmas tree, and sucking on a candy cane. Life is good.

The kids went with John this weekend so I had some nice me and grownup time. Yesterday, Saturday, I stayed in bed LITERALLY ALL DAY. I was the laziest Julie imaginable! I was sleeping and banking energy for last night because I knew I was going out to a party with dancing. It worked! I had enough energy to dance my butt off (which I hadn't done in a long time) and to spend some much-need horizontal boogie time with Ken. Hehehehe. I have noticed, however, that the heat sensitivity is really strong when I do sweaty things like dancing. (I'm told it's the MS.) My higher internal thermostat worked in my favor later, though, since Ken's 2nd floor heat was on the fritz and his room was a cozy 60 degrees.

Seriously, though. I got what I needed socially, emotionally, and physically this weekend so, when the kids returned at 5pm today, I had the Christmas tree up and ready to decorate. It was fun, going through the old ornaments, particularly the ones that the kids made. After the tree was trimmed, we had a lovely dinner of leftover pasta, took baths, read books, and went to bed. Ruby requested some special Mommy and Ruby time cleaning up the Christmas stuff (swear to God!) and, by the time we were done, Zane was sound asleep in his Santa hat. I'm telling you, life is good.

And, all my friends have inspired me to come up with some additional, seasonal, names for MS:

Mistletoe Smooch
Merry Season
Many Scents
Mulled Spices
Multiple Sparkles
Mister Santa

Saturday, December 08, 2007

MS--Not Multiple Sclerosis

I've decided I want to find a new name for MS. I want the acronym to stand for something other than Multiple Sclerosis...which, by the way, is a very scary sounding disease. So, when I say I have MS, it can mean:

Modern Sensibility
Mannequin Sequins
Masturbation Sponge
Moldy Sandwich
Math Sickness
Mammary Slime
Mmmmmm Slutty
Mars Spaceship
Man Salad
Massachusetts Slum
Maniac Solitude
Mother Scare
Mind Sparkles
Mandolin Sounds
Most Special
Mountain Solitude
Mayan Silence

I think I'm on to something.

Friday, December 07, 2007

Now these daughters have some serious mother issues!

And the beat goes on...

I swear to God/Goddess and all that is good in the world that what happened to me earlier tonight has absolutely nothing to do with my eyesight or my MS or even being distracted by the dysfunctional family of origin drama that came my way earlier today. It's snowing tonight and the roads are very slippery. Coming home from Ruby's yoga class, I came to a red light, started applying the brakes at least 2 car lengths behind the first car stopped at the light. Nothing happened. I was going downhill slightly so I was probably going about 10 miles per hour when I hit the car in front of me. She got what seemed to be a scratched bumper. I have a broken headlight and signal light and a bumper that seems to be hanging kind of low. This sucks. Because of my less than stellar driving record I had no choice but to accept the woman's offer to just pay her for the repair. We exchanged numbers and she called tonight to make sure I lived where I said I did and to tell me that she was going to take the car to her ex-husband next week. And, if I don't want to report it to the insurance company, I could just pay her directly for the repair. She offered because she got in an accident recently and when she reported it, her insurance went up $500. My insurance is already through the roof. Ugh. Now I have to take time off of work or deal with the whole public transportation thing again to get my car fixed, too, since the headlight is not functioning.

Immediately after exchanging info with the woman I hit, I was mumbling rather loudly about how terrible it was that I got in the accident and that I couldn't believe I hit the woman when I heard exactly what I needed to hear from my beautiful and serene daughter Ruby in the backseat: "Nancy (the yoga teacher) tells us to focus on the moment and not on things in the past or things in the future." Hmmmmmm.

So, I focused on the positive that no one was hurt, that we were headed home in a warm car to our warm home and that I would be able to fix the car (not necessarily possible if something broke on one of us). It worked...for a while.

I am trying to remember that now as I listen to Zane screaming and tearing his room apart because he's mad that he has to go to bed. He has to go to bed because it's bedtime and he did not get a book because he hit me, yelled at me, and refused to get out of the tub. Then he refused to put on his jammies and ripped all the sheets off the bed I just made. I am the meanest mommy in the whole world and he is going to kill me very bad.

I am grateful that I have two beautiful children. One who, thankfully, outgrew his preemiehood (preemieness?) well enough to have the lungs he's using to annoy everyone in our building right now. I'm waiting for Burt or Barbara to knock on the door and ask me if everything is ok.

Everything is ok. It's messy, it's loud, I still have my less-than-perfect childhood memories but I survived all of it and I'm still surviving it. I still have MS, I don't have a left headlight....AND it's ok. I'm ok. Not great but ok is all we can ask for some days.


I haven't reached any committee members to talk about this in person yet (I'VE CALLED 5 DIFFERENT PEOPLE AND GOT 5 DIFFERENT VOICEMAILS) which probably means I shouldn't be processing it via blog. Oh well. I'm not all that good with restraint of pen and tongue.

My sister just called. She wanted to tell me that she had lunch with our mother today. Our mother who she hasn't spoken to in 9 years and I haven't spoken to in about 20 (minus telling her I was sorry for her loss when my grandfather died last year). They had lunch because my 10-year old niece Emily said that she only asked Santa for one thing this year...for her mommy and her Nani (my mother) to get back together. Emily sees Nani probably once a week when my brother-in-law Norman takes her and her sister, Madeline, over to visit. Norman manages the relationship between my sister's children and my mother because my sister and my mother don't talk.

My children, on the other hand, do not know or visit their Nani or even receive invitations to visit (or cards, gifts, calls, or even a wave at my grandfather's 90th birthday party last year). My mother has never acknowledged their existence. But, I digress.

When Emily told my mother, her Nani, what she asked Santa for, my mother sent my sister a letter asking if my sister would meet her for lunch. My sister said "yes" and they met. My mother asked my sister why she had so much resentment against her and Laurie told her that, since becoming a mother herself, she had less understanding about how my mother could have been so unavailable and so unprotective and left us in harm's way with my then violent and actively alcoholic father. My mother then recited several examples of the violence she experienced but says she does not remember violence against anyone but her. (She is either lying through her teeth or she has one of the worst cases of denial I've ever seen since I remember her witnessing my own beatings and she, too, was physically abusive on occasion, and verbally and emotionally abusive on a daily basis. I will give her the benefit of the doubt and go with denial.)

My mother then asked what my sister wanted from her. My sister, who I apparently do not give enough credit for her emotional intelligence and maturity, said, "I want you to take responsibility for your part in our terrible childhood. Dad has apologized and accepted responsibility for his part." Shabam. I've spent THOUSANDS OF DOLLARS in therapy and I have never said that to my mother. But, once again, I digress.

Then...get this...My mother said, "I'm sorry."

When my sister repeated my mother's words on the phone to me a short time ago, I wanted run outside and see if the sun was still in the sky. It wasn't, but I think that's just because it's a cloudy day and not because the world as I've always known it has ceased to exist.

So, there you are. My mother said "Sorry" to my sister and they made plans for Laurie to bring the girls over to my mother's next week. Laurie said she wants to forgive her. She doesn't think she will be calling her to go shopping but she is not going to NOT BE in a relationship with her anymore.

I told my sister I thought she did a great job. And I meant it. And, with uncharacteristic honesty with myself and with her, I told her I felt a little jealous. She then said, "You never know. You could get a letter next."

I responded that I stopped waiting around for my mother to show up about 10 years ago when it brought me too much misery.

Did I?

How Clean is Your House?

I love the BBC show How Clean is Your House? One of the hosts is a size 14 or so British woman with bleached blond hair and blue eye shadow. She is probably in her late 50s or early 60s. She always wears heels and skirts above her knees to show off her very nice legs, and she interacts with men like she is a sex goddess. The other host is a slightly nerdy looking woman who is thinner and younger but has her own sassy, albeit innocent, personality. It's a reality show where people who have DISGUSTING homes are "turned in" by family or friends and taught how to clean their house. I like the show for lots of reasons. I love the British directness that the hosts use to tell people that they are slobs. I also like the natural methods the hosts use to clean--vinegar, bicarbonate soda, etc. and their tips for keeping up with clutter and cleaning. I also like it because the homes are so absolutely filthy that I feel like a neat freak in comparison. And, unlike decorating shows, these people end up with their own tacky stuff all cleaned up. With some of the other shows, I feel like, "Well, of course it looks good!" because they had a designer and thousands of dollars in new paint, flooring, and furniture.

I am not a slob but I am not a neat freak either. (Speaking of neat freaks...Barbara, my neighbor across the hall, is vacuuming the hallway AGAIN. I heard her vacuuming on Wednesday when I worked from home, too.)

I HAVE been a slob at different points in my life--some friends will remember my bedroom before I moved in with John. (If you took the roof off my building and looked into my room, you would have thought it was a Salvation Army dumpster.) I am waiting for Sandra to come over--she's the lovely woman from the Dominican Republic who traded me three months of weekly house cleaning and laundry for the Buick. She comes on Fridays and I love it and hate it. I still feel like I should be doing it myself and not need the help. But, I love that I clean up and sort laundry before she comes so she can get to the cleaning. And, when she leaves, I have a clean house. And, I really like Sandra. I hope that she is in my life for a long time so I can watch her grow and become the woman she wants to be.

Thursday, December 06, 2007

FMLA and What MS is Like

I had my FMLA meeting with HR today. Confusing...very confusing. The federal government says that MS is a serious illness and that employees of companies with more than 50 employees can take up to 12 weeks off because of a serous illness without losing their job. This is not with pay beyond any sick or vacation time you may have accrued. And, because I have a flexible schedule that I requested to accommodate my serious illness, I have to apply for FMLA now. I have to have my neurologist say that I have MS on a form that will go in my employment file. I'm not sure what this means for the future. I love my job but what if I leave it? Will my FMLA status follow me? Will it be "on my permanent record" along with the fact that I was caught smoking in the sanctuary when Sister Noreen found my cigarette butt floating in the priest's toilet after choir? I'm hoping to get some more info from others with MS about how it works with an unpredictable disease like this.

In the meantime, I just read something on the MS Daily Strength Web Site that I think should be distributed to the friends, family, employers, neighbors, and colleagues of anyone diagnosed with MS:

How We With MS Feel
(I don't have many of these symptoms but they are all common among people with MS.)
When We Say We Can't do Something Because We don't Feel Well, Put yourself in Our Shoes By Using The Examples of our Symptoms Below:
  • Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?
  • Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.
  • Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.
  • Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of Novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.
  • TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.
  • Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.
  • Tingling: Stick your finger in an electrical socket - preferably wet.
  • Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya' breathing?
  • Shots: Fill one of our spare needles with saline solution, saline won't hurt you, we would love something worse but don't want to end up in jail. Give yourself a shot every time we do our shot.
  • Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.
  • Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.
  • Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.
  • Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one... Bzzzzzzzzzzzzzzzzzz
  • Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.
  • Urgently Needing to Pee: We put a .5 litre remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.
  • Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.
  • Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet... Get a very large tattoo in your most sensitive area.
  • Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.
  • Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the same at all.
  • Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.
  • Bowel Problems: Take a 4 day dose of an anti-diarrhoea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there until tears appear.
  • Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead... optional of course.
  • Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms..... hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.
  • Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte's): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.
  • Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.
  • Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.
  • Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you'll get it.
  • Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.
  • Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day when you wake up.
  • Swallowing: Try swallowing the hottest chili pepper you can find.
  • Heat Intolerance or Feeling Hot When it's Really Not: You are on a nice vacation to Alaska. It's 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms - welcome to our world.
  • Then Finally...After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counseling is the answer.

Throbbing Head

My head is throbbing. I got 8 hours sleep and drank coffee this morning. I took Tylenol sinus and 4 ibuprofens. No relief. I also have a circular bruise on my belly from my Rebif injection last night. Ruby noticed it on my belly this morning when I raised my arms over my head and my shirt came up. I now have crop circle track marks on my belly, my butt, my thighs, and my upper arms. I do not like MS today. I do not like it Sam I am.

Wednesday, December 05, 2007

Happy Hanukkah!

For all those who celebrate Hanukkah--Happy 2nd Night!

Why do I write? Why do you read?

Why is what I write interesting to other people? Why is it interesting to you? Do you have MS? Do you care about what's happening to me? Do you even know or like me? Are you are a voyeur who likes to see inside random other people's hearts and minds? Does reading this help you in some way? Do you compare yourself to me and feel better about yourself? Is it entertainment?

I found out that someone I don't know incredibly well and who I didn't think had all that much in common with me is reading this blog on regular basis. I don't MIND exactly, but it made me start wondering about why I write and why you read. Obviously, I am not just writing to privately process my MS and my life or all this would be in a journal in my nightstand and not OUT HERE for all the world to see.

I've kept a hold-in-your-hand-and-write-with-a-pen-kind-of-journal at different points in my life. When I was 22, a boyfriend read my journal and learned what I thought was the worst secret in the world that I was keeping from him at the time. I was so consumed with guilt when he told me that he read the secret that it took me almost a year to be pissed off at him for invading my privacy. I have never kept a journal regularly since then. I think I've been afraid of someone reading all my secrets again. So, what's this blog/book all about? Did I just decide to put the secrets out there, on my terms, so they couldn't be discovered against my will?

You know Carrie on Sex and the City? I know she's fictional (I have MS cognitive issues; I am not delusional) but I always wondered how Big and other, various boyfriends felt about her analyzing their relationships in print. (She was a newspaper columnist.) Am I a Carrie wannabe (with MANY MANY MORE pounds and cheaper shoes)? Do I somehow NEED to do this publicly? Am I an emotional exhibitionist? For that matter, are all women emotional exhibitionists of one level or another?

Most of my friends need to talk with other people (usually other women) about their experiences, interactions, thoughts, pain, angst, fears, joy, confusion, etc. to figure out what they are feeling and to process those feelings. Some men, too, but I think, for the most part, that sort of thing is frowned upon in heterosexual male circles. I remember having a knock down, drag out fight with my ex and then hearing him talk about the Yankees on the phone with a very close friend a few minutes later. I don't think he wasn't bothered by the fight; I just think he had no clue how to get support from a male friend around it. Bald Hot Ken, on the other hand, has a committee (some read this blog, in fact). I know he shares stuff with this group of close friends and he gets support from them, but I'm not sure if the same level of sharing is going on or at least not in the same way. Do they share all the details?

When I was in high school, my female friends and I worried that boys told their friends all about any and all sexual encounters. I remember thinking that if I did such and such with so and so, all his friends would know if my boobs were too small, if my thighs were too jiggly, or if I had bad breath. Now I'm not sure. I don't think they share that level of details. About sex or about anything. It was probably more like "Ya! She put out!" or "I touched titty!" I don't know if they NOTICE the same level of details in us or in themselves. If I kissed a boy and knocked heads by mistake, I would share the embarrassing story frame by frame with a friend. Would he? I don't think so.

So, back to this blog/book. I write, sometimes with what feels like brutal honesty, about my fears, my warped sense of humor, my anger, my parenting mistakes, my job, my crazy thinking, my spirituality, my body and how the MS is affecting it, and all kinds of other stuff that enters my head and makes its way to my fingertips on the keyboard. It's ALL about the details. I dissect the details. I play with them, fondle and fiddle with them, rearrange them, and put them out there for all the world to see.

Thanks for letting me share.

Working from Home

I am very fortunate. I have a job that allows me to work at home two days a week. Today, I'm searching for photos and researching an article--two things I really enjoy doing. You're waiting for the "but"...right? No but. My job is the "j" on my gratitude list for today. I NEED a gratitude list today because I'm not feeling at all grateful. Is gratitude intuitive to anyone? I definitely need to work at it. Here goes:

A - AA and AWOL

B - Boston (because I live in a medically advanced metropolitan area) and Bonnie and Mackenzie are coming to Gingerbread Women in Pants!

C - Christina, my sister from a different mother and Cousin Karen who emerged from the ether again last year when Grampy died and is now in my life again. Oh--and Craigslist because I love "shopping" for Free Stuff.

D - Dad, he is in my life and I'm going to see him at Christmas, Diane, my librarian/photographer/knitting friend, and my Daily Strength MS community.

E - Eyes. I can see enough to drive and read and recognize my loved ones.

F - Family (my own) and the larger Human one.

G - Gina (my favorite nurse), Grammy, and Grampy in heaven.

H - Higher Power - Glad I have one of my very own that I get to define, redefine, etc.

I - Iced Coffee

J - Job (my very good one), John (my brother), and John (my ex--who gave me 2 wonderful children)

K - Ken, my BF, Karen Teacup (a wonderful example of motherhood), and Kristina with a K who is pregnant with her first baby

L - Laurie, my birth sister, Laura, my oldest friend, and Liz my spiritual sister.

M - Motherhood. That I get to do it. Macaroni and cheese because it's so easy to make for the kids.

N - Nancy, who teaches yoga to Ruby and me.

O - Olive Oil and garlic on pasta and Oprah.

P - Paula (Auntie Paula/Zane's godmother) and my uncle Paul who is the kindest relative in my family

Q - Quilts that my grammy made me and the quilting skills my grammy tried to teach Ruby and me.

R - Ruby, my rubiliscious daughter, and Rebif (my medication that's supposed to slow the progression of MS)

S - Sense of Smell. I would miss smelling flowers and good tasting food.

T - Tom (my brother), Theresa, and time because This Too Shall Pass.

U - Urine/Bladder control. I have it.

V - Vacation time because I have benefits at work.

W - Woman--being one. I can't imagine being a man.

X - X-rays. I have health insurance so my MRIs (which are kind of like X-rays) don't cost me anything beyond my insurance premiums.

Y -Yoga. I don't do it often enough but I know it is and will help me with mind, body, and spirit. And Ruby is going every Friday and loves it.

Z - Zane, my lovable and very boyish little boy, and Zita, my sister-in-law.

Tuesday, December 04, 2007

Bumps and Bruises (Inside and Out)

Ruby told me this morning that it's not fair that she doesn't get to see John as much as me and that it's all my fault. I told her that Mommy and Daddy decided together that it makes sense for her and Zane to live with me. She responded saying that she wants to live with John because he doesn't yell as much. I told her (in a not very nice tone of voice) that Daddy doesn't yell as much because she and Zane don't live with him.


I apologized, told her that I loved her, told her that I know she misses Daddy and Daddy misses her, that she is allowed to be mad at me and that I will continue to try not to yell. But I know that doesn't make it ok. My feelings were hurt so I hurt back. I'm supposed to be the grownup, though.

I just bumped into the garbage and recycling cans in the kitchen at work. Banged my leg really hard--bruise-making kind of hard--and made a loud noise as the plastic can knocked into the metal can.

I have started my day over a few different times but it hasn't worked. I want to go home and go to bed but it's only 2:40. I am going to set a timer on my whining. I get to feel like crap for another 10 minutes and then cut the crap. Move on. Focus on the positive. At 2:50, I am going to walk to Panera and get an iced tea and come back a new positive person.

Back to work.

Monday, December 03, 2007

Cognition Conversation on MS Site


LazyJulie: I just got lost on my way to the mailroom at work. I've worked here for 2 years and the mailroom hasn't moved. I almost gave up in a panic and returned to my desk. Finally, I just asked someone, feeling like an idiot. I'm not sure if it's my eyesight (optic neuritis has left me almost blind in right eye), sense of direction, diminished cognitive functioning, or something else. I hate asking myself "Is this MS?" questions all the time. Thanks for letting me share. Posted on 12/03/07, 12:12 pm
Reply #1 - 12/03/07 1:39pm
Hi Julie, Im sorry this happened to you, it can be very upsetting. This can certainly be the MS, it happens to me alot. You might want to read a book called The Cognitive Challenges of MS. I found it very enlightening. Good Luck.
Reply #2 - 12/03/07 2:11pm
This is definitely MS...I have the same problems everyday....everyday...have to get something out of the fridge and open it and sit there trying to remember why I opened it in the first place...what helps me are memory games on the computer to at least keep me "sane" and forcing myself to remember no matter how long it takes me to remember...good luck.
Reply #3 - 12/03/07 2:22pm
I would also have 2 say it's probably the MS. One day I got in my jeep to go to work and couldn't remember for the life of me how to operate it. Really freaked me out!
Reply #4 - 12/03/07 3:04pm
Yes, it is ms. I think this is the most scary part for me. You need some rest. Tell your doctor also.
Reply #5 - 12/03/07 4:53pm
Julie...this morning I couldn't remember, for the life of me, how my damn bra worked! I needed to adjust the straps, and I kept making them bigger..over and over, not tighter like I needed. I swear I did it 10 times! So frustrating. Last month I got lost driving to my Mom's house. I've lived in my home for at least 9 years, my Mom in her house, the home I grew up in, for at least 30. I completely freaked out. I was so scared that I was losing my mind. I finally turned around and started over. I'm laughing about it now. I could tell you 100 more stories, but I don't want you to lose respect for me...LOL
Reply #6 - 12/03/07 5:02pm
The phisycal aspect is one thing but when my mind goes blank and I cant pull a thought together or cant remember something i know that I know, it is scary for me. I just have to slow down sometimes and give my self a chance to think. just takes me longer sometimes now and very hard to get use to. I have to say it does make for some funny storie at times....
Reply #7 - 12/03/07 5:17pm
Reply #8 - 12/03/07 5:27pm
Hey, I've done stuff like that before! I thought I was just crazy! ha,ha,ha!
Reply #9 - 12/03/07 5:31pm
Ooops! Forgot what else I was going to say. I get lost in the grocery store and in Wal-Mart all the time. I just forget where things are! Isn't that stupid! I mean, I've been in there a bunch of times and suddenly I can't remember where stuff is at! As long as I don't forget where the door going out is, I think I'll be okay.
Reply #10 - 12/03/07 6:18pm
it's the m.s.. at times it's alot worse then others. i hope your getting the rest you need
Reply #11 - 12/03/07 6:27pm
Darling, I get lost all the time! I've learned to stick to paths where I can still see my long driveway on the farm. When I shop, I talk to myself to remind myself what I need next. I am a queen of the shopping list as town is far away, and I try to grocery and WalMart in the same trip. I only shop in the mornings, and I've made friends in all of the stores I shop. It is amazing how helpful clerks are when you learn their names (hey, they've got cheater nametags anyway). I can name at least 10 clerks in my local WalMart as I always shop in the morning. I have gotten lost coming home though that was some time ago. I was newer to the farm and forgot the correct turn on my gravel lane. That's OK as it is easier to see from the other direction which deadends into a state route... (Also gave me a chance to meet new neighbors.) A thousand times a day I forget what I'm doing. Luckily, my house is small so I'm not wasting energy remember which room to which I was going(there are only 3). My older friends tell me it is old age, but I know better. They simply don't understand what it is like to live with Swiss cheese for brains at 42 yrs. old... Hold on to the fact that we all just have to find ways to deal with MS issues. Personally, I play Mah Jong on the computer (matching tiles) which helps me with memory. I also calculate my gas mileage on the way home from town in my head or keep track of what I'm spending in my head... Anything I can think of to exercise the ole noggin' LOL... xoxoxo
Reply #12 - 12/03/07 7:49pm
Thanks everyone. I'm definitely freaked out by this but knowing you all have similar things and manage to keep functioning makes me feel a little better. As soon as my daughter finishes her homework, she's off to bed and so am I...hopefully by 8pm. I am definitely not getting enough sleep. Used to be 5 hours was enough. Now I need 9.
Reply #13 - 12/03/07 8:12pm
oh how I can relate to this. It is a 'normal' thing when you have MS I think. I know that I have cognitive issues. I hope with LDN these will go away. Actually I started to take Fish Oil supplements and that does seem to help a little. Others notice the difference anyway. ~hugs~