No Volvo and a Long Needle in My Back

I know the Universe has a better Volvo out there for me, but this was a huge disappointment yesterday. Ken and I drove down to Scituate with the plates from my minivan, ready to pick up my new car only to learn that the seller didn't fix the completely broken and inoperative emergency brake as promised.

Here's our email exchange before and after going to pick up the car. First, the email I received from the seller's wife on Thursday, confirming the fact that they were fixing the car and that I was picking it up the next day:

Hi Julie, We dropped the car off at the repair shop and told him it must be repaired tomorrow. He is reliable so I'm not worried.

Then, I received the following email from the seller himself on Thursday night:

The car should be ready at around 1-2 pm. I will keep on him to make sure this gets done.

I emailed him the following day before I left home AND followed up with a voicemail message:

John, I am leaving my house now for a 12noon appt. so I won't be on email. Are we all set to pick up the car, title, and bill of sale at 2:00pm-ish? Please call my cell to confirm: xxx-xxx-xxx, I won't be able to answer during my appt. but I will call you back. Thanks, Julie

He responded via a message on my voicemail saying that he would see me in Scituate after 2:00pm. I ran around like a chicken with my head cut off, getting a cashier's check (made out to myself, thank goodness), got to Ken's, took the plates off my van, waited for Matt to get off the bus so Ken could drop him at a friend's, and got on Rt. 3A and into tons of Friday afternoon traffic. (I called during the ride, got Seller John's voicemail again and left a message, saying that we we were running a bit late, I could be reached on my cell, blah, blah.)

Around 3:00 or so, we got to Scituate and I knocked on the door. Seller John's pretty daughter answered and shooed back the pretty dog inside. Seller John came out, hiked up his belt and said, and I quote..,"We have a conundrum." Picture this guy. Very, very white, balding (but not in a hot Ken way), wire rim glasses, polo shirt, khakis, Blackberry strapped to his belt, big huge house in Scituate, his own law firm out of his house...you know the type (not that moi would stereotype someone based on their appearance). He told me the emergency brake was still broken but that is was no big deal ("how much do you really use it, anyway") and that he would take a couple hundred off.

I tried not to cry or spit at him, told Seller John that I needed a car that was ready to pass inspection and drive, as is, with no repairs. I said something about him calling me if and when he fixed it. Then Ken got to hear every swear I know on the way home.

After we got back to Ken's and I put the plates BACK on the minivan, picked up the kids, had dinner, and went to a much-needed meeting that has babysitting for the kids, I came home to find the following email from Seller John:

My apologies regarding the brakes. My Mechanic spent all day getting the check light out and was only able to tighten the brake cable. It needs some more work. I will be bringing the car in on Monday and advise you as to the results.

I thought this deserved a response and I did not hold back:

No thank you. I no longer feel comfortable doing business with you and I plan to continue my search for another used Volvo.

Just to set the record straight: I left you a message at 2:30 p.m., telling you that I was leaving Weymouth to drive down to Scituate with my boyfriend who was rearranging his schedule to do me a favor. In that message, I told you that, if you needed to reach me, I would be available on my cell and I left that phone number once again. You did not choose to call me but, instead had my boyfriend and I drive all the way down to Scituate on a Friday afternoon for what felt like a fool's errand. Your offer to "take off a couple hundred" was inappropriate and manipulative. You knew I wanted the car, had a check in hand, and thought I would just say "yes" so I could drive off with a new car. You were wrong. Had you called me and told me the emergency brake was still not functioning properly in order to pass Mass inspection at any inspection station of my choosing, I would have said, "please fix it or no deal." I made it very clear that I was looking for a car that needed absolutely no work to be inspected, registered, and drivable.

You are an attorney and you made a deal with me. We agreed, orally and in writing, to $2500 AFTER you repaired the valve that made the check engine light come on and AFTER you repaired the emergency brake to working order. While "your guy" may have let the illegal and inoperative emergency brake pass inspection, I care about my safety and the safety of my children and other passengers. An emergency brake is required by law for a reason--SO YOU CAN STOP YOUR CAR IN AN EMERGENCY.

Since you are an attorney, perhaps you are familiar with the Massachusetts State law requires a private seller to have a car inspected or ready to pass inspection. As ou know, the Volvo's sticker expires on Sunday. Good luck selling your car.

Maybe this isn't a good thing, but sometimes I love what how bi&%$y I can be in writing when I'm mad. (Some of you may remember my letter to Dan Shaughnessy after his "tiny teen angels" comment about the women's olympic gymnastics team. He, he, he. It pissed him off so much he called me to argue his point further! He, he, he.)

So, the Volvo search continues. Someone offered me $1500 for the painted minivan (I'm holding out another week in the hope of getting $2000.) No test drivers have shown up yet for the Buick. If no one buys either and I find a Volvo, I will donate both and get the write-off. Maybe the MS Society takes car donations...?

Oh, to top things off, I found out yesterday that I STILL have to get a lumbar puncture even though my second MRI on 9/17 confirmed the MS diagnosis. The neurologist told me that it's too establish a base line or something like that before the disease modifying drugs start "changing things." It's scheduled for 9am on Friday, 10/5 (for anyone who wants to send me reiki/prayers/positive vibes/good thoughts). I'm scared...no TERRIFIED...of the pain. I'm sure it will be like most things...way worse in my imagination.

WBUR and Coffee Thoughts

Friday, September 28, 2007: At 43 years old, I have become a morning person. Is this a gift of MS? Hmmmm. After a few days with a bad attitude, I've decided to return to my practice of starting my day thanking my Higher Power for the MS (adding that I have no idea WHY I'm doing this but that I trust I WILL view it that way one day....hopefully sooner rather than later.)

I'm listening to NPR and feeling like life is not so bad. In fact, it is quite good. I could be the Texas inmate who received a last-minute reprieve from the death penalty (well, I guess he is having a good day, too...right?). I could be one of the Buddhist monks who was beaten to death while peacefully participating in a pro-democracy demonstration in Yangon, Myanmar.

I could be the mother of yet another soldier who died in Iraq. I could be Bob Oakes or Jay Clayton and have to beg for contributions during the Fall Fundraiser!

I need to wake up my sleeping children now.

I hope you have a lovely day. I promise to get back to the story of diagnosis...soon.

Sparky

I wanted to share an email exchange I just had with my high school friend, Laura (see photos). I am trying not to take it personally that no one but me has posted anything to the blog yet. Instead, I am going to start making stuff up. :-) This, however, is real:

Excerpt from an email I sent Laura this morning:

I bought a used volvo--pick it up tomorrow. I have listed the Buick on Craigslist--someone is coming to look tomorrow. I also listed the painted minivan on Craiglist and ebay. Someone from the UK bid $3000 but I think it's a joke so I sent them an email. No response yet so I relisted the minivan. Look it up: It's called "Colorfully Hand Painted 2001 Chevy Venture." My electric spine tingles are really a lot today and I don't like it. I also have a wicked headabhe. I am looking forward to getting lots of rest this weekend when the kids are with John.

An excerpt from Laura's response:

I hadn’t asked about your car situation. Why are you selling the minivan? And, the buick your dad gave you but its not what you want? Well thankfully Volvos last forever right?! Congratulations! My sister has a used wagon that she’s had a couple of years now and absolutely loves it.

Are you allowed to take aspirin or advils? Do they help at all? I think perhaps we should retire “Jewel” and start calling your “Sparky”, kind of fits your personality too. Haha. You have always been a live wire! I’m sorry you’re not feeling good today Julie. Hours are passing and tomorrow is another day, right?

Yes, Scarlet, tomorrow is another day. :-)

Anger Management

Thursday, September 27, 2007: I'm still not caught up on the diagnosis/treatment story, but...oh well. Last night, after I logged off, read to Ruby, and put her to bed in her shared bedroom with her brother who was not yet asleep (bad sign), I ATTEMPTED to put myself to bed. I was EXHAUSTED in a down-to-the-bones kind of way and I was (and am still) having these weird electrical charge sensations/pain up and down my spine. Didn't happen. The kids decided to be kids and mess around. I decided to be a pyscho mom and screamed and yelled a lot and made bizarre threats to break toys and throw them off the balcony. I eventually apologized and gave lots of hugs, they fell asleep, and eventually I got to sleep. I will make amends again this morning and make a list of things to do when I am tired and angry and hurting that do not involve scaring the crap out of my kids.

Anyway, I woke up refreshed and decided to let the kids sleep in a bit while I checked email. I found the following email in my inbox. I laughed till my coffee almost came out my nose so I thought I would share it:


Anger Management 101

When you occasionally have a really bad day, and you just need to take it out on someone, don't take it out on someone you know, take it out on someone you don't know.

I was sitting at my desk when I remembered a phone call I'd forgotten to make. I found the number and dialed it. A man answered, saying "Hello."I politely said, "This is Chris. Could I please speak with Robyn Carter?" Suddenly a manic voice yelled out in my ear "Get the right f***ing number!" and the phone was slammed down on me. I couldn't believe that anyone could be so rude.

When I tracked down Robyn's correct number to call her, I found that I had accidentally transposed the last two digits. After hanging up with her, I decided to call the 'wrong' number again.When the same guy answered the phone, I yelled "You're an a**hole!" and hung up. I wrote his number down with the word 'a**hole' next to it, and put it in my desk drawer.

Every couple of weeks, when I was paying bills or had a really bad day, I'd call him up and yell, "You're an a**hole!" It always cheered me up. When Caller ID was introduced, I thought my therapeutic 'a**hole' calling would have to stop. So, I called his number and said, "Hi, this is John Smith from the telephone company. I'm calling to see if you're familiar with our Caller ID Program?" He yelled "NO!" and slammed down the phone. I quickly called him back and said, "That's because you're an a**hole!" and hung up.

One day I was at the store, getting ready to pull into a parking spot. Some guy in a black BMW cut me off and pulled into the spot I had patiently waited for. I hit the horn and yelled that I'd been waiting for that spot, but the idiot ignored me. I noticed a "For Sale" sign in his back window, so I wrote down his number. A couple of days later, right after calling the first asshole (I had his number on speed dial,) I thought that I'd better call the BMW a**hole,too. I said, "Is this the man with the black BMW for sale? "He said, "Yes, it is."I asked, "Can you tell me where I can see it? "He said, "Yes, I live at 34 Oaktree Blvd, in Fairfax. It's a yellow ranch, and the car's parked right out in front." I asked, "What's your name?" He said, "My name is Don Hansen,"I asked, "When's a good time to catch you, Don?" He said, "I'm home every evening after five."I said, "Listen, Don, can I tell you something?" He said, "Yes?" I said, "Don, you're an a**hole!" Then I hung up, and added his number to my speed dial, too.

Now, when I had a problem, I had two a**holes to call. Then I came up with an idea. I called A**hole #1. He said, "Hello."I said, "You're an a**hole!" (But I didn't hang up.) He asked, "Are you still there?" I said, "Yeah," He screamed, "Stop calling me!" I said, "Make me," He asked, "Who are you?"I said, "My name is Don Hansen." He said, "Yeah? Where do you live?"I said, "A**hole, I live at 34 Oaktree Blvd, in Fairfax, a yellow ranch, I have a black Beamer parked in front." He said, "I'm coming over right now, Don. And you had better start saying your prayers."I said, "Yeah, like I'm really scared, a**hole," and hung up.

Then I called A**hole #2. He said, "Hello?"I said, "Hello, a**hole," He yelled, "If I ever find out who you are..." I said, "You'll what?" He exclaimed, "I'll kick your a**." I answered, "Well, a**hole, here's your chance. I'm coming over right now." Then I hung up and immediately called the police, saying that I lived at 34 Oaktree Blvd, in Fairfax, and that I was on my way over there to kill my gay lover. Then I called Channel 9 News about the gang war going down in Oaktree Blvd. in Fairfax. I quickly got into my car and headed over to Fairfax. I got there just in time to watch two a**holes beating the crap out of each other in front of six cop cars, an overhead news helicopter and surrounded by a news crew.

NOW I feel much better. Anger management really does work!

MS Sucks Haiku

Myelin breakdown.
Confused nerves touch eyes, spine, brain.
Invasion of me.

My neck hurts, my eyes hurt, my legs hurt, my head hurts. I'm going to read to Ruby and go to bed.

Bought a used Volvo today. Pick it up on Friday. It's my new KGB car. Listed the painted minivan and the Buick on craigslist and ebay. I may end up even!

Treatment and Email Conversation with John

Wednesday, September 5, 2007 - Sunday, September 10

The week was a blur. Back and forth to the hospital for IV steroid infusions, Liz driving us around, cleaning my house and giving me a reiki-like healing, trying to pray, feeling scared, feeling confused, sleeping a lot, calling people, checking MS books out of the library, trying to do work from home, sleeping, questioning every pain, vibration, and weird sensation in my body, taking lots of pills--vitamins, calcium, anti-nausea medicine, ibuprofen...nothing narcotic or mood altering.

During this very gray, fuzzy week, I had the following email exchange with John, you know, the man I lived with for 15 years, my ex-husband, the father of my 2 children?
As far as your health goes, I feel very sad for you and "our" family but if anyone can get through it with a smile it's you. (If only he'd stopped there...) I'll read up on MS but in the mean time is there medication that you can take to ease everything? What will you be like in 5 to 10 years? Is this a death sentence? and how will this effect me and our children, now and in the future?

My response:
Regarding me and my health: No, MS is not a "death sentence." I have no idea what it will be like in 5 to 10 years--it's a very unpredictable illness. But, then again, I didn't know what life would bring in 5 to 10 years before I was diagnosed with MS. Do you know what your life will be like in 5 to 10 years?

How does it affect you and the kids? Well, you will have to answer about you, I guess. In terms of how it will affect the kids, I have every reason to believe that I will be an amazing patient with amazing recuperative powers who will take control of my disease and my life, like I always have in the past. I also know that I will do everything possible to give the kids the information, comfort and support they need to deal with any feelings they have if and when I have episodes and I'm not able to do certainly things like I normally do. Like right now, I have no vision in my right eye and they are understanding that I need them to stand on my left side and that I am still Mommy. Ruby and I visited a website last night for kids who have a parent with MS and she asked a lot of questions and learned a lot. As I said in my email yesterday, I've ordered a cartoon video to help explain things to Zane. In other words, I am making sure that the kids are ok and that, however they are affected by my MS, they will get what they need to be ok.

You may want to visit the MS Society web site: http://www.nationalmssociety.org/site/PageServer?pagename=hom_gen_homepage

I know that I am being somewhat of a bitch posting this here. I also know that sometimes I want to be a bitch. I also know that I am probably misdirecting my anger at MS at my ex-husband. I also know that I don't care and nobody can stop me! I don't trash him directly or to the kids or in front of the kids, so cut me some slack.

John has continued to be true to form, saying "no" when I asked him to keep the kids overnight so I can go to the hospital and not worry about how to get them to school the next day. I should thank him. Seriously. If I was diagnosed with MS when I was married, I probably would have felt like I needed to stay in the relationship even though I was incredibly lonely and unhappy or I would die alone and crippled and never have anyone around to help me. That would have been wrong. Especially because he wouldn't have been able to help me. He doesn't know how. Expecting help from John is like going to I hardware store for bread. I would starve. I need to remember that and be grateful for all the people who are willing and available to help.

I s

Back to the Story--My Boyfriend's Blurry Birthday

My BF's 44th birthday - Tuesday, September 5, 2007. I had big plans for Ken's birthday. I dropped the kids off at school, stopped for coffee, and drove to work with his present in the car, I planned to stop on the way home, buy a mushy card, and I think we were supposed to get together for a meal before the kids came home..

I didn't plan to tell anyone at work about the MS, because it was a "suspected diagnosis" and I was pretty sure I would have to then "recant" when they discovered I was fine. Plus, I felt like my boss should be the first to know. She had just lost her mother to breast cancer and was sitting Shiva with her family. Plus, I looked fine. I felt like crap but I looked fine soo I thought no one would need to know. I was pretty sure I wasn't going to suddenly start falling down or slurring my words or anything.

That was before I started to go completely blind.

I was sitting in my office, with my right eye completely blind when I started to watch the words on my computer screen disappear in pieces. I thought I was going blind. I WAS going blind.

I called Ken and then Christina (who immediately left Maine to come and get me) and then Liz (who offered to drive up from Virginia and I said yes) and then Kenny Chang (who told me to come into the ER for IV steroids) and then Christina again who was on the road and then Ken again and then Gina and then anyone else I could think of. I ran into the VP of Promotion's office to tell her, through sobs, and apologies for crying and oversharing, that I had MS and I was starting to go completely blind and that I was only telling her because Jessie was out and that I wasn't going to be able to pay my respects at Shiva and that I needed to leave because I was afraid I was going to start slurring my words or falling down or that I would go completely blind and not be able to find my way downstairs. She listened and told me to sit down and didn't tell me until the following week that she was flipping out, too, because her "worst possible scenerio" was going blind.

I took the elevator down just one floor because I was afraid I would lose my eyesight completely on the stairs. I made it to Panera around the corner in my office park and sat at an outside table to wait for Christina. I remember it was a beautiful day. I figured that if I did go totally blind and couldn't see Christina when she pulled up, she would be able to see me and come and get me. I think I told her what I was wearing just in case. Then, I got tired of sitting there waiting to go totally blind so I decided to go into Panera and get lunch since it was almost noon. I couldn't read the menu except for the large titles so I asked the man ahead of me in line to read the ingredients to one of the salads. He acted annoyed but told me what was in the Figi chicken salad or whatever it was. I decided not to push my luck and ask for a recitation of the soups. Instead I ordered a couple things that Christina and I ate and she said tasted good but I don't remember. I carried the food outside and Christina was there. She took the bag and walked me to the car. I wasn't blind yet, but more importantly, I wasn't alone.

Then....

I only have random, disconnected memories of that blurry boyfriend birthday:

- Mass Eye and Ear Emergency Room
- IV infusion -- bubble bruise from bad stick
- Laying on a gurney near other people including a lovely woman in a wheelchair. I introduced myself and told her I had MS. She told me she had Graves disease or something like that. She was glowing with positivity. We chatted during my infusion while she waited for whatever care she needed. She told me she had had PIC lines which were way worse than IVs. She was married, she was peaceful.
- Christina bought me two bags of black licorice and Women's Health and O Magazine then she ruined it by apologizing for buying me crap to eat instead of something healthy.
- Way, way later, I left with a whole bunch of prescriptions and orders to come back the next day.
- Christina drove me to my house, where we met Ken and then the kids came home and then I gave Ken his gift with no card and then Christina drove Ken back to my office in Watertown to pick up my van and drive it back to Weymouth and then pick up his car and go home. I really wanted my car at home even though I couldn't drive it. I'm not sure why.
- Liz, who got in her car in Alexandria, Virginia when I called to say I was gong blind, showed up sometime that night. She put Kate and Zack to bed on my new sleeper sofa and stayed up listening to me until I could fall asleep. I remember being afraid I would be totally blind when I woke up. I felt safe that Liz was there if it happened so she could help me get the kids ready for school.

Suess-wisdom At the End of a Bad Attitude Day

I just read a great quote on a work colleague's blog about battling breast cancer. I think it also fits for MS and life in general:

“I have heard there are troubles of more than one kind.Some come from ahead and some come from behind.But I've bought a big bat. I'm all ready you see.Now my troubles are going to have troubles with me!”
-Dr. Seuss

Just for all of you who think I'm amazing, inspirational, blah, blah, blah. Sometimes I whine. Somtimes I eat half a tub of fat-free caramel with my finger while shopping for "Free Stuff" on Craigslist.

Skipping Ahead to the Now: Tuesday, September 25 at 3:30pm

Things I hate about MS right this very minute:

• Waking up with so much energy that I feel even better than normal (maybe it's the steroids?), but then feeling like a weak, old lady by 3pm.
• Continually checking to see if my glasses are dirty when it's really just my optic nerves messing up the messenges to my eyes.
• Getting invited to join a cruise to Alaska in 2 years and wondering, even if I had the money, if it's ok to make that plan.
• Having people at work who seem to know about the MS (but who I didn't tell) not say anything but look at me in a pitying way.
• Having Zane be clingy and whiny and angry and not being sure if it's his way of dealing with the instability the MS has brought on so far (friends driving us places, IVs, etc.) or if he is just being 4. Wondering if I will always wonder things like that as the kids grow up.
• Realizing after writing the one above that my kids are going to grow up with a chronically ill mother and how much that sucks. There are seriously screwed up adults who are screwed up because they grew up with chronically ill parents.
• Feeling so positive that I am thanking God for MS because I believe that one day I will view it as a gift but then, several hours later, feeling so sorry for myself that I want to stamp my feet and say "No fair!"
• Feeling guilty because I am feeling sorry for myself and there are people so much worse off than me. I could have breast cancer, I could be the parent of the 6-year old who died on the soccer field in Belmont.
• Questioning my cognitive functioning when I have to think really hard how to make an 8/1 x 11" copy of an oversized, multi-page document.
• Feeling like I have no filter when I talk or write. Not really caring about that either but worried that I might care tomorrow and regret the words coming out now.
• Wanting a Diet Coke really bad but not wanting to walk downstairs to get one. Never mind. I'm going.

Lazy Labor Day

Labor Day, Monday, September 3, 2007: I think I rested all day. I think I talked on the phone. I think I read my MS for Dummies book and did MS research online. It's kind of a blur (literally and figuratively).

I know I read some stuff on the MS Society website about talking to kids about MS since they were coming home at 5pm. I missed Ruby and Zane so much. They only go away for one week a year and usually I really need the break when they leave, but I am DYING to see them when they return. I was scared, too. I was tired, achy, half blind, I had been tentatively diagnosed with a life changing, chronic, potentially (but not definitely) debilitating illness that has tons of unknown stuff connected to it and I was about to return to my full-time life as a single, mother of two young children.

I don't like the unknown. I like black, I like white, I don't like gray. Actually, I suck at gray. I like pretending that if I plan for every possible scenerio, it will somehow protect me from those worst possible scenerios. Even though I TRY REALLY HARD to live one day at a time, I would have trouble saying "no" if I had the opportunity to look into a crystal ball. I remember when preemie Zane finally came home from the NICU (I was at NEMC Maternal/Fetal Medicine for a month and he was in the NICU for 2 months.). I told my sister/friend, Christina that, for the last 3 months I had absolutely no control over my life. She chuckled and pointed out that I had NEVER had control over my life. I just realized it during the last 3 months. I have smart friends.
So, the kids came home. I went out of my way to make them a dinner they loved. (I have no idea what but it was probably pasta or hamburgers and ice pops for dessert.) During dinner, we did our best thing/worst thing routine where we go around the table and say our best and worst things for the day. The rules are simple: You have to have at least one best thing. If you have two worst things, you have to have two best things so you don't focus on the negative. Zane talked about going to New Jersey with his dad, Ruby, and his cousins, and going on water slide at an amusement park. Ruby's best and worst things were about vacatin, too. I remember her worst thing because it was hysterical. She was really looking forward to her cousin's pool which Cassie (who is Ruby's age) described as HUGE AND REALLY FUN. When they went out to the backyard, Ruby saw a small (not kiddy, but certainly not full-size, above ground pool) with water that only went up to Zane's waist. We have a big, in-ground pool at our condo so Ruby has a very different definition of HUGE AND REALLY FUN when it comes to pools. Ruby showed me her disappointed facial expression when she saw the pool.

When it was my turn, I told them that my best thing was them coming home and having dinner with them and that my worst thing was finding out I probably had MS--Multiple Sclerosis. I told them that I was having trouble seeing, but that the doctor thought it would get better. I told them I was very tired and needed to get extra rest. I told them I was not going to die of MS and it was not contagious. I told them I was still going to live to be a very old lady but that, unless someone really smart found a cure, I would have MS forever. I told them that I ordered some books from the MS Society Web site (Hey! Those still haven't come in!) and that I would find other kids for them to talk to who had moms and dads with MS. I told them that I was going to tell Daddy, too, and that they could tell whoever they wanted. I told them that I would answer any questions they had or anyone else had and if I didn't have the answers I would find them out. I think they asked for another ice pop. It was sort of anticlimactic.

We did our normal, nighttime routine. Bath, books, and bed for Zane first with lots of snuggling and back-rubbing to welcome him home. Ruby and I sat on the couch together and perused the kid section of the MS Society website. She played games, colored, and asked questions. Then I read to her, did some more snuggling, and sent her to bed.

Then, I was alone. With the MS.

I wrote the following email to Ruby and Zane's dad, my ex-husband, the man who I once loved and who loved me enough to reproduce and buy property together.

I have been diagnosed with MS--multiple sclerosis. I am seeing the best specialists (neurologist, neuro-opthalmologist, neuro-radiologist, etc.), reading a lot about it , getting my treatment/support team in place, and planning to talk to the kids about it tonight, Monday. I will tell them that I am not going to die from this, that I have no vision in my right eye right now, that I am more tired than usual, and that I have achey muscles but that those things will come and go and that I have the best doctors in the whole world taking care of me at Mass General. I am going to tell them that they did nothing to cause it, they can't catch it from me, and that they don't need to worry about me because I have lots of doctors taking care of me and friends helping me. I'm also going to tell them that there are books and movies about MS for kids whose parents have it and that I have ordered those.

I am telling you because the kids will probably bring it up and I didn't want you to be surprised.. If you have any questions, please ask me, not the kids. And please don't ask on the home answering machine. Thanks.

Julie

This is what we have come to. It may seem sad, but it works like this..or at least doesn't cause too much drama. Impersonal emails are the only thing that works when it comes to interacting with John. When I let down my firm boundaries, he rushes in and pisses all over my floor, if you know what I mean. We do not have what anyone would call an amicable divorce although I would like to one day. He has to stop being pissed off and mean first, though, and I have to stop being hurt and surprised when he is.

I hit send on my email, called Ken to say and hear "I love you" and tell him about the kids' homecoming, and then I went to bed.

Sad Sunday

Sunday, September 2, 2007: I woke up at Ken's, looked at the blurry trees and my blurry boyfriend, and remembered.

I cried...we talked and made love.

Ken got ready for church, I got ready for my meeting, and we promised to talk later.

I drove to my meeting...very slowly and carefully, thinking back on all my fenders benders in the last year, and wondered if that was caused by MS. I got coffee and sat in my regular seat up by the speaker. When my lovely friend Karen Teacup came in, it took everything I had not to grab her, drag her into the kitchen, and sob out my story. Well, actually...that's what I did. But I think I waited for her to get her kids settled and get a cup of tea first.

I was soon surrounded by other lovely women, Diane and Ellen I remember...maybe others. They hugged me and said kind things. I felt like I was loved and that my higher power was going to give me what I needed.

After the meeting with speakers I don't totally remember, I went to Karen Teacup's house with Karen, her husband Richard, and their beautiful children, Ariana and Matthew. We ate, talked, and played. I felt like I was loved and that my higher power was going to give me what I needed.
After I left Karen's, I drove to Nurse Gina's. She hugged me, her partner John hugged me, and I hugged their son Jack (Molly and Emma were gone with their dad). After I insisted that I am comforted by information, she looked up MS in her nursing books and read to me about symptoms, progression, types of MS, treatment, etc. I felt very tired, but thought it was emotional. I was still blaming the pain in my arms on the sleep sofa I moved a few weeks earlier. The headache was probably stress...right?

After Gina's house, I went to Borders and bought MS for Dummies which I read in a day.

Sunday night was my last night to sleep over Ken's before the kids came home on Monday. It was really nice to be together, but the fan was still blurry.

Diagnosis

The next morning, Saturday, September 1, 2007, I woke up in Ken's lovely green bedroom and and realized my eyesight was worse. I played with it for a while, looking at the beautiful trees out the window, watching the brushed nickel fan turn overhead, alternating covering up one eye and then the other to make sure I wasn't imagining it getting worse. I could now see nothing, absolutely nada, out of my right eye. And, I felt wicked tired, as if I hadn't slept at all. I wasn't sure but I also thought I felt pain in my arms and my chest and I had a wicked headache behind my "bad eye." Ok--This was ridiculous. I MUST be making this up. I put my glasses on, took them back off, and finally told Ken what was happening. "Do you think I should call Kenny Chang?," I asked. Ken, who shares none of the worst qualities of my dad or my ex-husband (Thank God!) said, "He said to call if it got worse and this is worse, right? So call!" I did.... You know how you look back on life-changing moments and try to remember all the nitty-gritty details? The only thing I can specifically remember about Kenny Chang's response to my description of my worsening eyesight was its almost mundane delivery: "Well, that is consistent with MS." And the world stopped. So, it was the Saturday of Labor Day Weekend, the kids were away, I was half blind, scared, tired, achy, had a neuro-opthalmologist tell me I probably had MS, and I had to make a choice. Kenny Chang said I could wait until Tuesday to schedule an MRI or I could go to Mass Eye and Ear ER that day and they would send me to Mass General next door for an emergency MRI. He said it could take up to 8 hours. Ken (Bald Hot Boyfriend, not neuro-opthalmologist) and I took a walk on Wollaston Beach and explored my options. I love that Ken listens, tells me what he hears, tells me what he feels, tells me what he thinks, but lets me make my own decisions and supports them, whatever they are. So, here's what I remember about that thought process: I was remarkably clinical. I don't remember crying or carrying on at all. If I had a brain tumor and was going to die, I wanted to know right away so I could make "arrangements." I'm not quite sure what I thought those arrangements would have been but they would have involved spending as much time as possibly kissing, hugging, playing, and loving the kids; talking to people about serious things I needed them to know before I died; visiting people and places and listening to music I loved before passing on to heaven where I would see my grandfather, Mr. Rogers, my friend Lynn, and my cat Basil; eating things that taste good but are bad for me; and probably having lots of sex. I didn't think about sky-diving again but I think that would be a good idea if I had a few days to spare. If, on the other hand, I did not have Liz's brain tumor and I was not going to die but I was going to go completely blind, I would want to know right away so I could look at everything and everyone really hard and really long so I would remember what they looked like when I could no longer see. I worried that Zane and Ruby would forever be in my visual memory as a 4-year old and an 8-year old, but I thought, "I can handle this. I can handle this. I'm a good handler. I know how to handle things." There's a mom at one of my meetings who is blind and she seems very close to her son, even though she can't see him. I would befriend her, take classes in Braille, get a seeing-eye dog, and learn to feel faces. I once read that blind people made better lovers because they compensated with their other senses. So, great. I would become and even BETTER lover (as if that would be possible!) and get a dog for the kids! I also thought: The kids are gone so I need to take advantage of this free time to get this all settled. I think, deep down, I thought the doctors would learn that it was all some big mistake, I had something benign and treatable wrong with my eye, I was making a big deal out of nothing, they would discover what it was, I would take a pill, and it would go away. Then, I would be back to normal when the kids came home and it could all just be a funny, scary story to tell my committee. Rather than bore you and myself with all the boring details of waiting 8 HOURS at Mass Eye and Ear and Mass General to get the results of the MRI (with Ken by my side the entire, boring time, even though I kept telling him he could leave), I will cut to the chase. Oh, but wait. Ken and I had a long conversation about getting a seeing eye dog if I did go blind. He pointed out that the condo association would have to bend the rules and let me get a dog since it would be covered under the Americans with Disabilities Act. But, then, I thought about a special I saw or heard on some news magazine show about service monkeys. I love monkeys. I mean, I don't KNOW any monkeys, but I've always thought they were very cool and I like visiting them at the zoo, etc. So, we started talking about my getting a service monkey and that, if I ended up in a wheelchair, the monkey could sit on my head and I would freak people out by not mentioning him at all. We both laughed when we thought about how much Zane would like having his own Curious George at home. Ruby would probably want a girl monkey show she could dress it up like a baby sister. Oh, one more thing before cutting to the chase: I have to tell you about my adolescent drawing. When you get an MRI, they want to know about any metal in your body. The give you a line drawing of a man (with a man's build, a Ken Doll hint of a penis and short hair) and you're supposed to indicate where you have any metal inside your body. I decided, in an effort to enterain myself and be medically accurate, I would have to "feminize" the line drawing. So I drew breasts, slightly longer hair, eyelashes and lipstick, rounded shoulders and hips, and a hint of a vaginal opening. I also, mistakenly assuming that my Meridian IUD was metal, attempted to draw that birth control device on my womanly representation. The male MRI tech seemed horribly confused and embarassed. The female tech though I was hysterical. Smart woman. After the very long MRI where I had to take off my funky cap and reveal my awful hat head, remove my belly-button ring, wear hospital jammies and lie absolutely still and not move my eyeballs behind my closed eyes (not easy), we went back to Mass Eye and Ear and waited some more. We tried to talk about the monkey but I think we were kind of quiet. Then, Kenny Chang went over to Mass General for what felt like forever. When he returned, he ushered Ken and I into a small room in the MEEI ER. I knew it was bad. When something is wrong with a character on a medical drama show, they ALWAYS tell them in a small, private room. If it was good news, he could tell me in the lobby or even in the waiting room or hall. Kenny Chan, in a very sincere voice, reported that, even before he knew my presenting symptoms, the neurological radiologist who read my MRI said, "It looks like MS." The world stopped again. I felt Ken's hand squeeze mine and remembered to breathe. I remember having to ask: "So I have MS?" That's when the double talk started. Kenny Chang said, "Well...your MRI is consistent with a diagnosis of MS." I remembering NOT asking: "What the &@%$ does that mean?" I think I said, "Hunh?" He went on and on about clinical diagnosis, lesions needing to show up on more than one area of the brain and spine, episodes separated by space and time, blah, blah, blah. He said he didn't think it was anything OTHER than MS but that he wanted to refer me to an MS specialist neurologist and there may be future MRIs and other tests to confirm the diagnosis. I don't remember crying then. I went into action mode and said, "So what now?" He told me that I could check into the hospital for three days and start IV steroid treatments which were used to treat the "fire" of optic neuritis (a common symptom of a first MS episode that results in sudden eyesight loss). It was now almost Sunday, the kids were coming home on Monday, and I did not want to go into the hospital. (When I was waiting for Zane to be born (see preemie picture), I was hospitalized for 5 1/2 weeks so the whole inpatient things was a "been there, done that" option. I said, "no thanks" and went home, shell shocked, still blind in one eye, and with a diagnosis of MS. I vaguely remembered that I was suppoed to call for an appointment with a neurologist the following week. I don't remember the night. I know I cried. I know Ken held me. I know we talked. I think I slept. I called a lot of people. I know some of them cried, too.

The Medical Mystery Continues

The next day, Friday, August 31, I went to work with the plan that I would leave early, drive to Mass Eye and Ear, meet the neuro-opthalmologist, have some more tests, and start solving the "medical mystery." I don't usually work on Fridays but I switched around my schedule while the kids were away.

I mentioned my "medical mystery" status to a few people at work, but convinced everyone (and myself?) that this was a "cool" thing and nothing to worry about. I'm not sure what they thought.

I got to Mass Eye and Ear on time (weird!) and met Kenny Chang. Although the name may sound like he was a receptionist, waiter, or a friend, he was, in fact, my neuro-opthalmologist. But that's how he introduced himself: "Hi, I'm Kenny Chang." Kenny was probably about 25, but he wore a white coat and seemed very smart and very sincere. I'm going to try to find a photo of him for the blog.

Kenny Change gave me a whole bunch of other tests, and asked me a lot of really unrelated questions about things that had NOTHING to do with my eyes. (I thought he was kind of nosy and maybe a little weird.) During the family history questions, I told him that my paternal grandmother was blind. I didn't know the exact cause of her blindness so he asked me to call my Dad. Ugh. I did and found out that Grammy Baker went blind in her 20s of something called Von-Hipple-Landau disease. Naturally, my dad started asking me a bunch of questions about why I was at a doctor's office, why I was asking about Grammy, etc. so I promised to call him back after the appointment. (I would have preferred to tell him once the "medical mystery" was all solved, but apparently that was not meant to be.)

Apparently, the Von-Hipple-Landau disease didn't fit with my symptoms so the call was totally unnecessary. (Darnit!) Kenny Chang told me that he thought there were a few possibilities of what could be wrong with me: inflammation of the optic nerve, brain tumor, Multiple Sclerosis (MS), Lyme Disease, and some other things I don't remember. He told me that he would schedule an MRI for the following week and that I should call if anything got worse. Worse? What the hell did that mean? Was it going to get worse???!! I decided not to ask what that meant. I was going to practice creative visualization and imagine my "medical mystery" being resolved with some benign diagnosis and that DEFINITELY did not involve anything getting worse.

I don't remember what I felt when I left. Probably scared, probably confused...maybe just numb. I remember asking my Higher Power to help me stay in the day and focus on what I "knew" to be true and not on what I feared or imagined. I called "my committee" members (the name I inherited from Ken for him and my close buds who love me as I am when I'm crazy or happy or sad or mad or scared or a "medical mystery.") They all listened and, in their own ways, echoed my prayer. I am blessed with good friends who meet me where I am. My amazing friend Liz assured me that I could not possibly have a brain tumor because that was her worst possible scenerio and it wouldn't really work for us both to have brain tumors. Made sense to me.

After checking in with the committee, I walked around Boston for a while, enjoying not having to rush home for the kids and waiting for my dilated eyes to return to normal. (I was still legally allowed to drive with one good eye.) I remembered to call back my dad to explain the weird questions. He was very concerned, about my health and about me driving with the kids. When I told him that I had plenty of time to wait for my eyes to return to normal since I didn't need to pick up the kids, he switched gears: "The kids are away?" he asked, "Do you think your lost eyesight is psychosomatic because you miss Ruby and Zane?"

What the ?&%$????!!

I froze and, after a beat, said, calmly and quiety, "No, I don't."

"Well, I don't mean to minimize what's going on..." he started back-pedaling.

"Then, don't." I said, firmly but kindly, before saying goodbye, thanking him for his concern, and assuring him I would let him know how my "medical mystery" progressed.

I thought about every time I had to justify and prove that I was sick or hurt when I was growing up and later married to John. (This may explain my working title for my book: Maybe I'm Just Lazy: One Woman's Journey with MS.) The sucky part is, even though I knew that my dad loved me and was concerned about me and was blowing off my blindness in an effort to "make it all better," I immediately started thinking, "Is he right? Could I be making this up because I miss the kids?" I knew this was a crazy thought but I believed it, you know? I mean, this man, my dad, loves me very much but his one of the people who helped install the buttons that get pushed for me around illness, taking care of myself, etc. His parents probably installed the same buttons on him. Of course, I would be affected by his seemingly harmless question. Also, my dad has emphysema so maybe partial blindness isn't a big deal to him. Ok. That's probably a stretch.
I can't remember much about that night except that I spent the night at Ken's (a rare treat!) since the kids were away. We talked and enjoyed spending time with each other. After he fell asleep, I felt sad when I looked up at the blurry fan blades and struggled to read my book before falling asleep.

But I thought I had pink eye!

Thursday, August 30, 2007: The Day My Life Started to Change....Again.

I woke up in the morning and my purple bedroom looked a little foggy, like I had a coating of Vaseline over my eyeball. "Hunh?," I thought. I reached for my glasses on the night table and put them on. Slightly better, but still blurrier than usual. I took turns covering my eyes to see if one was worse than the other. (This may seem odd, but I suffered from a cornea injury at the start of the summer and couldn't see out of my right eye for a couple weeks, so I was in the habit of checking my vision one eye at a time.) Sure enough, it was the right eye again. I could see light and shapes and movement, but no detail or color. Hunh? Could the regenerated cornea have somehow "unhealed?" But, wait...there was no pain. That cornea injury was VERY painful and this...nothing. I got up and went about my business. When I went into the bathroom to take a shower, I realized that I had fallen asleep with my eye makeup on. That was it! Poor beauty hygiene! I removed my makeup, got in the shower, washed my face and the rest of me and got out, expecting my vision to clear up. Still bad...still no pain. Hunh?

I got dressed, enjoyed my rare alone morning (Ruby and Zane were away with their dad, John, on vacation in New Jersey. While I was getting ready, my fabulous nurse friend Gina called to say "hi" while I was in the middle my morning routine. I usually avoid the phone in the morning, but the kids weren 't home so it wasn't the usual chaos. Plus, Gina had just started her new job at Boston Medical Center and we didn't have as many opportunities to connect. I took her call and, while we were catching up, I mentioned my vision problem. I told her my symptoms and asked her if she thought it was early, pre-itchy and pre-gooey conjunctivitis. She paused and said, "Maybe....?" Then, in her very calm, non-panicy nurse voice, she suggested I should get it checked out, especially since it was the same eye as the cornea injury because I didn't want to mess around with an infection in that vulnerable eye. (Gina later told me she thought of MS right away because a friend was diagnosed after a similar, sudden onset of vision trouble. I'm grateful she didn't tell me that then or I probably would have been frightened into complete inaction.)

I called my primary care physician's office and left a message saying that I thought I had pink eye and I wanted to get it checked out because it was the same eye that had recently recovered from a pretty severe cornea injury. I left home and stopped at Dunkin Donuts before getting on the highway to go to work to get my large iced with extra skim and two Splenda (in case anyone feels like picking one up for me). While ordering at the drive-thru, my doctor's office called back and said my doctor could see me at 11:45. I called work, told them I thought I had pink eye, and that I was going to work at home and go see the doctor later in the morning.

I took my ice coffee home and did my thing, logging onto email, making calls, editing an article, creating and checking in on production calendars, sneaking peeks at Changing Rooms on BBC America, and waited for my appointment. I got there on time, was called right in, and Dr. O examined my eye. She said she saw no sign of pink eye or any infection and she wanted to refer me to an ophthalmologist. I groaned and regretted making a big deal out of nothing, knowing that it would be another appointment and more eye examinations. (I had had my fill after the cornea injury). But, I smiled like a good girl and took the referral for an appointment an hour later at a nearby ophthalmologist's office -- the same practice I visited for follow-up after my cornea injury. Well, at least I wouldn't get lost.

I went home, had lunch, checked in with work, and got to the ophthalmologist on time. (Two consecutive on-time doctor's appointments is almost unheard of for me!) After checking in, I was "triaged" and told that I would have to have some tests. Convinced that this ophthalmology practice was trying to ream my insurance company, I underwent 3 hours of various eye tests. They dilated me numerous times. took digital pictures inside my eye, blew air in my eyeballs (a yucky sensation), made me look through metal goggles in a chair that looked like some weird S&M toy, made me look at blinky lights in a head-size planetarium, and other things I don't remember.

During this time, I was also trying to sneak calls (cell phones weren't allowed in this office) to reschedule an appointment I had to look at a used Volvo on Craigslist. I was kind of pissed off that this "silliness" with my eye was going to stand in the way of me test driving a new, used car. I wasn't aware of being nervous at all, just annoyed and inconvenienced.

Ken--correct me if I'm wrong, but I think you stopped by to say "hi" which was very sweet of you. You may have even brought me a larged iced coffee with extra skim milk and Splenda which you often do JUST when I need one.

At the end of all the tests, the ophthalmologist, Dr. S., told me that there was nothing wrong with the front of my eye and that he thought I might be having an "issue" with my optic nerve. I wondered whether or not he thought I was making it up. He didn't say that but the voice in my head did. What he did say was that I was a "medical mystery."

"Cool!" I thought. I'm a big fan of the show "House" so I was looking forward to a Hugh Laurie-type character entertaining me with his curmudgeonly sex appeal and solving the mystery.) Dr. S. (who looks and acts nothing like House) told me that I was in luck because he was a teacher at the Mass Eye and Ear Infirmary Neuro-Ophthalmology Clinic so he could get me in without the usual month-long wait. He was either a good actor or I was in denial, (or maybe both), but I thought there was no urgency and that I just happened to fit into a cancellation the following day. He warned me that with "medical mysteries" like mine there might be a lot of testing before they figure out what was wrong.

I went home, emailed work, called Ken and some friends, and told them about my new "medical mystery" status. I decided to focus on my cool new "medical mystery" status and not to worry. I went out to dinner and to a meeting with a friend and tried to ignore her "Did I say that outloud?" concern about a brain tumor. I really didn't get offended because my filters don't always work in times of stress either. I knew that she cared and that she would be there for me and that, at the end of the day, that was what was most important. And, since I don't have a brain tumor...it's all good.