Not quite ready to face the reality of it, taking things one day at a time

I recently updated my address with the National MS Society and started getting literature from them again. I think I now remember WHY I did NOT inform them of my move earlier... As I sat, earlier today, reading some of the MS magazines, it really kind of freaked me out. It seems that by putting my head in the sand, much like an ostrich, I was pretending that I didn't have MS for all of these years that I have been diagnosed. Seeing it all again... in black and white print... was a wake-up call of how lucky I really have been.

I was NOT ready to see ads in magazines for power lifts to get into your vehicle. I was not ready to see ads for power chairs, hospital beds, canes, walking sticks, or exercise equipment that can be used with a wheelchair.

I explained to Mike that I felt as if there was an elephant sitting on me. It was all kind of overwhelming.

I was recently excited to learn that there is a MS support group that is NEW to Dubuque and it meets next week. (Meets the first Tuesday of the month.) With Mike's schedule, it looks like I WILL be able to attend this time. HOWEVER, I attended a seminar in Milwaukee once - right after being diagnosed - and I was NOT ready to see what I saw there... I was NOT READY to see so many people in wheelchairs, or with walkers, or with canes. As I was initially excited for the group in Dubuque, I am now the tiniest bit scared that I will come face to face with some of these insecurities yet again. 

I am trying to plan in my head WHEN my breastfeeding journey will end, trying to stall as long as possible, wondering IF Silas will remain healthier if we continue to breastfeed after Sydney starts 3 year old preschool in the fall. (Mike assures me that it IS a fantastic thing to breastfeed Silas, but keeping him healthy once Sydney is in school seems unlikely and that exposing him to germs will help Silas when HE goes to school in a few years.) I keep trying to convince myself to quit breasfeeding, but the fact of the matter is that I really am NOT ready to quit yet... and WISH that we could let Silas decide when we are ready.

I know that my doctor gave me four months time until my next follow-up. I keep wondering how soon to go back on daily shots and how long it will take to get them shipped. I dread cleaning out a corner of the fridge to store a month supply of pre-filled syringes. It's starting to feel SO REAL now.

I informed Mike that we really SHOULD be smarter with the purchase of our next house and we SHOULD make sure that there is one bedroom on the main floor. (He discouraged me from admitting DEFEAT.)

Mike summed up my feelings like this, and I think he hit it on the head: It kind of feels like a no-win situation.

Dang it, it IS hard to remain optimistic and cheery when I am face-to-face with so many unknowns.

The pile of magazines that I got from Madison may be tucked away until I am ready to read them. Seriously, flipping through the one magazine stirred up more than enough emotion for me already.

Taking it one day at a time... and hoping for the best outcome!

SYDNEY at 38 months

Sydney is an amazing little boy.

He has great empathy and compassion. He is an EXCELLENT big brother. He demonstrates great concern for others and their feelings.

He is challenging and smart. He likes to test his boundaries to see what he can get away with. "I'll be a good listener now!" is a phrase that comes out of his mouth often. Lately, he's been going through a phase (again) where he hears only what he wants to, making us repeat directions over and over. Recently, I told him ump-teen times to put his shoes on because we are going out, but he continued to ignore me; he got upset when I loaded Silas in the car and started the car - begging to come with, too!

Over the past few months, especially since Silas started walking, he has a new fascination with acting like a crazy person whenever I vacuum; he pretends that it is chasing him and he flails and hops, under the dining room table and all around the house, trying to get away - often, throwing himself in the path of the vacuum, only to narrowly escape. (Being a fly on the wall, it's got to be QUITE a scene to witness; I'm so glad - note sarcasm - he's teaching his baby brother to act like a lunatic whenever I move all of the chairs out of the way to vacuum. Thankfully, Silas still runs to get our little kid Dirt Devil so that HE can vacuum, too.)

Sydney wakes and almost immediately announces "I'm hungry!" He requests a bowl of cold cereal almost every morning. Quaker oatmeal squares (cinnamon), Cinnamon Life or Corn Chex are his favorites. He also requests PURPLE JUICE - which is 100% juice of a cranberry blend. Sometimes, he requests a bowl of oatmeal, but wants to make it himself. Other times (but more often at lunchtime), he wants peanut butter & nutella on bread, while he eats an additional plain slice of bread during his wait for the PB & Nutella sandwich to be made. (Sometimes, quite often actually, he calls nutella "granola" instead, but I'm not sure WHY.) His favorite dinner consists of fish sticks with tartar sauce, avocado slices, carrots and dip, and some fruit - served in his airplane plate.

Sydney used to request "Elmo on." ALL. THE. TIME! Since early spring, however, his initial request is to watch "Dinosaur Train". (We have a new - 2012 - episode where they collect a dinosaur from every letter of the alphabet to ride the Dinosaur Train together, while singing "Dinosaurs A to Z". THIS is his favorite!!!) If we would let him, he would LIKE to sit and watch television all. day. long! He would start at 7:30am and could easily go until mid-afternoon with the children's broadcasting on PBS... The Cat in the Hat... Super Why... Dinosaur Train... Sesame Street... Sid the Science Kid... Word World... Super Why (again)... Barney... Caillou... Clifford... Dinosaur Train (again)... and on...

Sydney enjoys painting. He goes through phases where he likes to color sometimes. Other times, he is more interested in doing puzzles or looking at books. He hasn't asked to play with PlayDoh in a long time, but that is probably for the best, since Silas would eat it. We used to cook and bake together A LOT (before Silas came into our lives) but we're so much busier now that we rarely do this.

Sydney likes to play in the sandbox and go outside to blow bubbles.

We LOVE to go to the library "to buy more books" as Sydney says. We enjoy the story time sessions there, too. When it isn't so blasted HOT outside, we could walk to the library, but it has only happened once so far this season.

We also discovered that Sydney LOVES the local pool. They have playground equipment in the little kids area where he can go down a covered slide and into the pool of water below. He LOVES this!!!

He is starting to enjoy play dates with friends, too. (Lucy and Ellie are his girlfriends. Linkon, Casey, Noah and Garret are his friends that are boys.)

Sydney has been PLAYING GAMES at nap and bedtime. He likes to "save some pee for later" and get out of bed to poop. Also, claims to "need help putting his blanket on" after MULTIPLE excursions out of his bed. (Little stinker... used to go to bed perfectly AND STAY THERE!)

He LOVES books. He has "The Cow Loves Cookies" memorized 90% despite having returned it to the library a LONG TIME AGO. He is able to recite it from memory WITH or without the book. (That is his favorite book to read with Papa Olson.)

Sydney LOVES to be a helper... and a big brother!

We're trying to curb him from his excessive (screeching) whining. We remind him "We listen to nice voices and good manners." When he whines and cries, we remind him "We can't understand you like that. Please use your nice voice." (It seems to be starting to work.)

He's started to LIE more in this new agegroup; that's not fun! He also goes through phases where he is NOT being a good listener. (It drives US - parents - crazy to have to repeat ourselves forty-two times. Parenting books are offering some tips on how to change this behavior. Seems that I read a lot of parenting books these days...)

I started keeping a list of the things when Sydney says "Someday, I'm going to...." I look at it as his own Bucket List. Recently, he declared he was going to be a giraffe; that one will be a little harder to pull off than drive a tow truck. :)

He is starting to use his active imagination and tell stories. He also likes to change up the words (to be silly) in stories and songs... because Mike and I often do that to him to see if he is paying attention. (i.e. This is George... he is a good little leprechan, but always very curious.) At bedtime, he does NOT like when I sing "Crinkle, Sprinkle, Litter Tar... cow Pie ponder cat two har." because that is NOT the way the song "Twinkle, Twinkle" goes. When he isn't over-tired, he tends to find it more humorous.

We sure do have A LOT OF FUN!

A look at the lake... long-weekend pics

Felt bad paying $15 for baby aquasock shoes and $6 for baby sunglasses, but KNEW that we'd be using them.

Silas is (thankfully) leaving the sunglasses on... I think he realized how bright it is out on the water.

Sydney enjoys sunglasses, too.

A relaxing boat ride - up river.

Thankful for self-timers... a group shot of all of us on the boat. (Mike and Karin were gone this day.)

Are you having fun, yet?

We're all enjoying the sunshine and nice weather.

Papa and Nana Olson are EXCELLENT hosts.

Hooter Hider, turned sun shade. We didn't want Silas to get sunburned and he was getting SO SLEEPY!

We're at the lake!

Papa shows Sydney how to load the BLOW GUN with mini marshmallows.

Papa Olson blows the gun, checking to see how many he can shoot at once.

Sydney is loading him up...

Papa Olson and Uncle Mike sit on the dock with Sydney and try to catch fish.

The boys wait for fish to bite (the worm).

Sydney fishes with Papa Olson.

Sydney, growing bored with fishing, announces he'll be right back. He snuck onto the deck and tried the blow gun himself. :)

Uncle Mike yelled for Sydney to "Come Quick! We got a fish!" and dispelled the rumor that there are NO FISH IN THE LAKE.

Sydney is SO EXCITED to see a fish (not in a pet store's aquarium).

Sydney keeps looking at (and talking to) the fish, calling him a "cute little fellow".

Karin enjoys a nap on the boat, until the boys start catching fish. Then, the dock became "THE PLACE TO BE". Sydney continues to talk to the cute little fellow in the bucket.

Papa Lowell and Daddy can't resist the urge to fish.

MORE FISH! YAY! :)

Grandpa Lowell, Uncle Mike and Daddy fish, while Sydney keeps an eye on all the fish in the bucket.

Asking Sydney "HOW BIG was the fish that you caught?" He replied, just like Daddy taught him, "THIS BIG!"

MOM: How BIG was it?
SYDNEY: THIS BIG!

Sydney proudly shows me all of the fish in the bucket and declares "Dis one likes it when we pet it. He don't mind one bit." (I didn't have the heart to tell him that THAT ONE was dead.)

Nana and Silas come down to check on the fishermen.

Sydney shows Nana and Silas all of the fish they caught and declares that "they will be SO YUMMY!"

Uh-oh, had to take a potty break. (Mommy enjoys her zoom lens from the house.)

Self-portrait for Mommy and Silas.

Ready for a boat ride. Showing Silas a fish that is not yet in the bucket.

Silas is rocking the tourist attire... fishing hat, life jacket, swim trunks. He's just missing his super cool sunglasses!

Sydney goes TUBING with Daddy.

He liked to go slow.

Auntie Karin and Uncle Mike enjoy the relaxing boat ride.

Uncle Mike and Daddy Mike step out of the boat and walk around in the sand bar with the boys.

We laugh at Sydney... he put on an Old Style (beer)  hat he found on the boat.

Sydney is dressed the part of the tourist, but misses a fanny pack and a camera.

Sydney LOVES to go riding on the 4-wheeler with Papa Olson, but doesn't like loud noises so, he wears special "ear things".

Sydney wears "those special ear things" when riding on the 4-wheeler with Papa.

The septic system had backed up the day before we arrived and we had to wait for the plumber to come fix it. Uncle Mike had dug out the ground around it. Afterwards, there were plenty of helpers to cover it all up again.

What's up, Doc?

WEDNESDAY – We went to Madison to see my neurologist. We had arrived early. We had checked in early. We grabbed a quick bite to eat. We left Sydney and Silas in the food court with Grandpa Lowell and Great-Aunt Betty and we went to Neurology for my appointment. We were escorted into an exam room almost immediately. Then, we sat... and sat... and sat. At one point, the doctor poked his head in the room and declared that he thanked us for our patience and indicated that he would be with us in TEN MINUTES.

During the appointment, we were away from our children for A LONG LONG TIME!

Once the doctor finally did meet up with us, we talked about my recent flare-up, breastfeeding, former MRI results, treatment options AND he performed routine neurological exams on me.

He indicated that THE HEAT is NOT what caused the flare-up. He indicated that they used to elevate MS patients body temperatures in hot tubs until they lost vision in one eye, only to have the vision return once the body temperature returned to normal. He confirmed that THE HEAT only causes temporary damage and was NOT to blame for the flare. (He wondered if we'd had a virus in our household. The only STRANGE thing I could come up with was the series of bug bites and allergic reaction I had been having... on and off, since June. He indicated that it MIGHT have contributed to it, but there isn't a real way to know WHY it flared up.)

He respected my wish to breastfeed. Surprisingly, he did NOT indicate that I need to quit right now, as I had expected. He assures us of the benefits for mother and child TO BREASTFEED and indicates that when we are ready to quit it, he suggests I go back on medicine at that time. (I told him that I do not want to quit until after August 1, 2012; 15 months for Silas = the same as Sydney.)

My MRI results from August 2010 DID show MS activity at that time, as well as plenty of old (activity) scarring on my brain and spinal cord. He confirmed that we do NOT need to repeat MRIs unless there is a NEED to do so; i.e. if we were to switch from one medicine to another, using it as a baseline. He showed us a chart of repeat MRI results that varied from month-to-month over the course of a year, sometimes hitting at a good time and others at a bad time and assured us that repeating an ultrasound wouldn't mean much of anything if it was hitting at a particularly good time.

Treatment options were discussed. Because I had been on one of the meds and NOT tolerated it well, it rules out three meds in one swipe, as they are all closely related. We decided it IS best to go back on the daily shot that I had been on in the past; afterall, no one has ever died because of that medicine. In the works, pending FDA approval, there is a highly effective (80%) PILL that has been well-tolerated with little-to-no-side-effects in psoriasis patients vs. the 40% effectiveness of the Copaxone shot that I would go back on until the NEW ONE is approved in the treatment of MS.

As for the neurological exams, he said I did reasonably well. I had to walk the length of the room and pivot, walk heel-to-toe (like a sobriety test), stand with my eyes closed, pretend to hold an invisible tray,  track a moving object, touch my nose - away - and back to nose. He tested my strength in my legs and hands. He poked me with a pin or other sharp object  - asking about my sensations. (I have since learned in reading on the internet that he was likely just checking for different reflexes by poking in various spots and watching for the reaction.)

When tracking moving objects, my right eye IS displaying minimal Nystagmus when the movement is laterally off to the far side. (He did not seem concerned.)

As he was gathering his things to leave, I questioned "Aren't you going to check my eyes?"

Stumped, he wondered "Do I NEED to check your eyes?"

"I'd prefer NOT to ever lose my vision." I replied.

"Well, hop on the table. Have a seat, we'll take a quick peek..." AND SO, per my request, he DID check it out.

Turns out, there IS some slight scarring on the optic nerve of my right eye. (That had NOT been there during my last checkup in August 2010.) He didn't seem alarmed at all, but I, personally, DO find it rather upsetting. At that moment, I had wished that he had NOT checked my eyes afterall. (Mike assures me that the scarring on the optic nerve COULD be two years old; there's no telling WHEN it got there and there is NOTHING that can be done about it... therefore, I shouldn't worry about it at all. Of course, that is easy for him to say that, but he DOES have a valid point.)

During the neurological exam, the doctor never really says much. (I think it is because he doesn't want you to know WHAT he is - or isn't - looking for.) He did mention that my reflexes in my legs especially are OVER-ACTIVE, which is common to MS.

He said that he wanted to see me again in 4 months. Immediately, my brain started thinking the worst... WHY does he need to see me again so soon? I thought this was a GOOD appointment. Mike reminds me that they are HOPING that I will have started back on the Copaxone by then. (I guess I just got spoiled when he'd always been so happy with my outcome that he declared not to come back for an entire year; I can hope for that again in the future.)

As for my first cousin who was just diagnosed with MS... the doctor is not concerned. We're of Northern European decent - live in the northern hemisphere - are both female AND are in the preferred age range for being diagnosed with MS. He indicated that my case has remained very minor over the years and that the course of my illness has treated me well. He hinted that my flare-ups have been minor. "Waking up with complete paralysis on half of your body would be a flare-up. What you had IS minimal. Consider yourself lucky." (I guess when you look at it that way...... I really AM lucky!)

He told us about a MS patient who used to worry herself sick about what the MS was going to do. Eventually, he reports, she died from heart problems instead of the MS that she feared so much. (I think that was my subtle hint NOT TO WORRY about things so much!)

Again, I'm left feeling hopeful... that this disease will LEAVE MY VISION ALONE! I'm NOT overly thrilled about having to inject myself with a shot every day, BUT there are worse things out there... I'll just continue to play the hand that I was dealt. One of these days, I will set a QUIT DATE for breastfeeding and get the ball rolling on ordering my shots. (I guess it IS the right thing to do.)

I am thankful that I have been SO FORTUNATE through the years. Fingers crossed for many more good years to come...

• • •

Recently, I let the National MS Society know that I had moved, divorced, remarried, moved, etc... and am now back on their mailing list. A packet just arrived in the mail. Turns out, there is NOW a support group in Dubuque that meets once per month at the same hospital that provided us with the breastfeeding support group. AWESOME! (Turns out, Mike's schedule WILL work out for me to attend - this month. It might be nice to be surrounded by others that are in the same shoes as me.)

I want what Silas has...

Sarah Olson Guard

wanted to THROW UP this morning when Sydney announced "What's baby eating? I want one, too!" ... only to discover that Silas had found a roll of cat puke (digested food & hairball) under the dining room table and was eating it like a candybar. ((shiver.... gross!)) I quickly cleaned it all up and Sydney decided he didn't want that afterall. :)

Oh, the games we play...

Sydney has been playing GAMES with us every chance he can get. He is (still) protesting naps and bedtime.

On Wednesday, he refused a nap - claiming he wasn't tired. I made him stay on the couch and have quiet time. After we went out to run errands, he fell asleep on the car ride home (and slept in his bed after I carried him there.)

Last night, he yelled for an hour that he wanted his blanket on, but he really CAN do it himself. In fact, when he sneaks out of his room and lays in the hallway, he always manages to get his blanket on there just fine. (If he would STAY IN HIS BED, the blanket wouldn't be an issue, but he likes to check to see that the gate is still open or not.) Shortly after I had fallen asleep, I found him climbing into my bed. I hugged him and sent him back to his own bed.

At 8:20pm, I left him in his room with THE DEAL that we could go buy donuts tomorrow IF he goes to bed like a good boy. (We have a book where the boy runs errands with his mom on Fridays and they start by buying donuts. From there, everywhere they go, they get a live dinosaur to take home. Sydney likes that book and wonders if we'll get any dinosaurs while we are shopping. I recently bought a sall dinosaur that I am HOPING to smuggle into the donut bag on some Friday - JUST FOR FUN! )

(Silas was already SOUND ASLEEP before 8:20pm, having had only one - early - nap today.) After I left the room, Sydney managed to suck down his entire 10 ounce cup of water and requested MORE. I assured him that he should no longer be thirsty tonight. I look forward to washing his bedding in the morning after he soaks through his diaper. Sydney had also turned on the reading light in his room and had been reading books for QUITE a while. That is, after he had one potty stop... AND one poop/potty stop - BOTH after bedtime! OH, the games we play...

At 9:40pm, Sydney happened to wake Silas up.

After waking Silas, I assured him that he NEEDS to be in his bed now and I turned the light off. He was upset at first, but I reminded him that it IS LATE and almost time for Mommy to go to bed already.

So much for cleaning up the house and sitting down to relax. So much for some quiet time with a book. So much for catching up on my project life album (or anything else for that matter). I'M GOING TO BED! (This is making for an INCREDIBLY LONG DAY for me!!!! I'm betting he'll be awake by 6:30am.)

Sigh... remembering the days when he went to bed SO WELL and wondering WHEN those days will come back again.

Field of Dreams