Infusions – FAQ

I keep getting questions about my infusions and some of them just prove to me that I need to do some better explaining about what the treatments are intended to do.  I’m going to write it FAQ-style.  Most of the following questions have been asked of us recently.

Q:  Are you feeling better?  Are the treatments working?

A:  The short answer is – we can tell the treatments are working if nothing changes.  The longer answer – the purpose of most (maybe all?) Disease Modifying Drugs (DMDs) used to treat MS is to slow or stop the progression of the disease.  Left untreated, most people with MS will experience additional symptoms over time which will continue to affect their bodies.  The DMD that I am on – administered via infusion – is intended to keep the disease from progressing.  So if it is “working”, we will not really know until we continue to see no changes, no new symptoms.

Q:  How much longer do you have to do these treatments?

A:  Forever.  Well, at least for as long as we (Alex, me, my doctor) feel that it is keeping me stable and keeping my disease from progressing.  Which could be forever.  When people go off their DMDs, they often see progression of the disease and return or worsening of symptoms.  So I will be on this particular DMD for as long as it works for me (I am in contact with people who are on their 60th infusion).  That’s why we called it a “long road”.

Q:  What are the side effects of the infusions?

A:  Obviously there is a list of side effects put out by the drug company, but this is what I usually experience:  extreme tiredness for about a day after my infusion and usually worsening of the symptoms in my hands immediately after.  We have learned that the best way to deal with the side effects if for me to schedule a “recovery” day for the day after my infusion.  I stay home and just force myself to chill so I don’t get completely exhausted.

Q:  What is the deal with the brain virus thing that you’ve mentioned before?

A:  One of the side effects of Tysabri (the drug they administer during the infusion) is that it can “activate” a fatal, untreatable brain virus.  About 50% of the population already have this virus, but because it is a relatively weak virus, your natural immune system supresses it.  When you take Tysabri, it can weaken the part of the immune system that keeps this virus from becoming active.  In the past, it was just a gamble when you choose to do the infusions.  But now, there is a test to determine if you are a carrier for this brain virus.  Luckily right now, I am not a carrier so there is no risk for me.  However, you can convert to being a carrier at any time, so I will continue to be tested for it about every 6 months.

Q:  How are you feeling?

A:  I assume that this question is usually directed at my physical condition.  (It is often followed by “You look great!”)  MS is different for every person.  In the past, before there were so many great treatment options, MS could leave people looking/feeling pretty debilitated.  I think this is often what people expect when they haven’t seen me for a while.  I feel pretty good.  My two biggest symptoms are extreme fatigue which comes & goes (and is unrelated to sleep or other physical factors) and altered sensation in my hands.  The best way to describe what is going on in my hands is that they feel like I went outside in the snow without mittens, built a snowman and then came back in – they are in this constant numb/tingly state that almost feels like they are thawing out, but it never goes away.  Consequently, I have lost some dexterity and feeling.  The severity of it fluctuates, so some days it is really bad (you’ll know when you get an email with tons of typos!) and other days they feel semi-ok…but never completely normal.

Q:  Is that the only symptom?  How bad does it get?

A:  I’ve had 3 big relapses as well as smaller episodes of symptoms and of optic neuritis (problems with my vision).  The last relapse was pretty bad.  About 99% of the people in my life did not see that (which to be honest I am glad of) because it was bad enough that it kept me at home.  I had so much numbness, tingling and affected sensation throughout most of my body that I couldn’t walk without looking like a VERY drunk person.  I couldn’t safely go up & down the stairs in our home, I had pain and sensation that kept me from sleeping or being comfortable when I was awake.  I had muscle spasms that made me jerk unexpectedly.  I had such extreme fatigue that I spent most of those days sitting/laying down.  The one day that we ventured out to go to Alex’s family day @ Boeing, I had to tour the factory in a wheelchair.  Not fun, not pretty.  Glad the meds are working!!

Q:  Have you tried XYZ diet/treatment?

A:  Maybe?  We’ve looked into lots of different diets, treatments, new drugs, etc.  I don’t mind a quick link to an article or reference to something you’ve heard about, but we have done our research.  Lots of it.  We have a great doc @ the Virginia Mason MS Clinic, we are up to date on new meds and new clinical trials for alternative treatments.  We feel really confident that we have chosen a great team to partner with in my care and a great treatment that is doing what it is supposed to do – keep me in remission.

Q:  How are the kids dealing with this?

A:  Like kids.  They don’t really have the “baggage” that a lot of us grown ups have about what MS means (or can mean) to a person.  They did see me at my worst during the last relapse and it scared them.  But they’ve also seen us be proactive and they are seeing that I am stable on the DMDs.  We have been very honest with them all along, trying to explain the truth about what this diagnosis means without scaring them.  For the most part, I think they don’t really “get” it.  But that’s ok.  They do get worried sometimes.  They ask questions and we answer them honestly.  And they are a huge help on my treatment days, they do see the importance behind the infusions and that the DMDs are keeping me in remission.

I hope that answers lots of questions.  I’m happy to answer others you may have, leave them in the comments section and I’ll do my best to answer them.

A few links to great info about MS and about the specific DMD that I am taking:

What is MS?
About Relapsing-Remitting MS (RRMS)
About Tsabri (the infusion drug)

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Help wanted: long road ahead

Warning:  lots of honesty ahead.
I haven’t talked a lot about what this MS diagnosis has meant to me or our family.  I haven’t shared a ton about the infusions I am doing, except to let people know that we’re doing them and to look for help with the little boys.  But the truth of it is the path that we are on is hard.  This diagnosis sucks and the treatments aren’t super fun either.  Physically my body is not “normal” and probably won’t ever be again.  Going to Seattle every month for my infusion is expensive, it’s hard on our family, physically taxing for me while I’m there that day and requires a lot of planning and preparation to make sure everything is organized back at home while I’m away.  All of this, plus it is incredibly emotionally draining to get through another day of something I DO NOT want to do .  All of these things aren’t things that I (or our family) broadcast regularly.  We do our best to be positive, play the hand we’ve been dealt and live our life as well as we can in spite of the circumstances.
I’m writing today because we need help.  Every month there is another infusion, every month we need help.  Right now, we are not getting the help we need.  I don’t say that or write these words to point fingers or blame.  Everyone is busy, our friends and family have lots going on.  I think it’s easy to see when help is needed when there is a crisis or a “big” event – a death or a new baby for example.  It’s easy to see what needs to be done.  We are not in crisis and every infusion isn’t quite a “big” event.  It’s not easy to see what help is needed and we understand that.  In a perfect world, I wouldn’t have MS and I wouldn’t be doing these treatments.  In an almost-perfect world, our friends & family would be mind readers and just intuitively know what we needed.  But those aren’t the worlds we live in.
I will be going for an infusion once a month indefinitely.  None of the MS treatments have an end date.  None of them “make you better” or produce a “cure”.  So this will be something our family will be doing for a while.  Hopefully, it will begin to not be as physically taxing.  We’ve heard that it is a possibility that as we continue to have infusions, the physical effects of the infusion process begin to minimize.  So for now, we really need to ask for your love, help & support.
Here are some specific ways we need help:
  • we usually need some help with the little boys the day of the infusion – a play date at your house or at the park, or someone to come here and hang out for a few hours
  • the kids often need rides to/from school or activities
  • the trip gets expensive, the costs out of pocket are usually around $100 for the day
  • help with dinner would be nice sometimes, even bake @ home pizzas ease the burden for Alex & the kids
  • the day after my infusion, I have tried hard to block my day out and do nothing otherwise I exhaust myself. Having a friend over for coffee helps force me to stay home and not do much. Help that day with fixing dinner or kids’ rides would be welcome also.



The tangible help is needed because otherwise all of us – me, Alex and the kids – are all scrambling to make these days work.  It has been stressful these last few months and I’m not always resting the day after like I should be.  The stress of it just adds to the emotional toll that it takes on our whole family.  The help we get from friends and family will help to alleviate the stress and get the tasks accomplished.  But the intangible aspect of that help is that our family will feel loved and supported and NOT ALONE in this process.  And I’m sure you’ll agree that’s the most important help of all.

Thank you for reading this and taking it for what it is – an honest request for help from the people who love us, an acknowledgement that we can’t do this alone, a way of giving specifics to our “tribe”, who we know *WANT* to help, but maybe just don’t know how.  And thank you for considering how you can help us in the months to come.  We are thankful to be blessed with a lot of family in the area, and an amazing community of friends.

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Winding Yarn is Believing in Miracles

I stand on my warm front porch and I gently slip the ball band off a skein of beautiful handspun yarn.  I take a deep breath, wrap it over a chair and start winding.  And I realize that it is a step of faith.  I wind and I think and I realize that I am steeped in miracles.
Anyone who knows me, knows that I have been a knitting maniac ever since I learned to put sticks to string 4 years ago.  And if you know my journey, you also know that my immune system has been slowly turning against its own body in the form of MS and that my hands have suffered because of it.  I stopped knitting a while ago and haven’t picked up needles or yarn for quite some time.
I had several unfinished projects here that I thought maybe I would be able to finish someday.   But it became apparent that my hands are altered too much to handle thin yarns and the projects have been a sometimes painful reminder that something I loved is gone.  I finally sent those projects off to internet friends who agreed to finish them for me.  The first finished shawl came in the mail today and instead of being sad as I had thought I might be, I was excited to open the package.  The shawl is gorgeous and I realized that instead of being reminded that I couldn’t finish the project myself, I am looking forward to wrapping myself in the attentions of a faraway friend, who – though we’ve never met – put time and love and thousands of stitches into this lovely shawl.

I wind the yarn and my thoughts turn to Colorado.  The events this last week grieved me so deeply.  I can’t explain why, but it has been so heavy on my heart and difficult for me to listen to the news or read the details.  I wind my yarn and I watch my little boys from the front porch. Little boys who don’t understand that mama’s hands don’t work, don’t understand men who shoot into dark theaters, don’t even think about these things that are constantly on the minds of the grown ups around them.  I think about Colorado and I pray for the people there.  And I pray that my boys will grow up to be men who throw themselves in front of bullets to save the women they love.  I think of the miracles that happened in that theater and the miracle of two little boys and warm sun and cool water.

This yarn is the color of a stormy sea, and I think how amazing that a short time ago it was fluffy and white and stuck to the back of a sheep!  Now it is the color of a mermaid’s tail and some skilled spinner has teased it into a twisted barberpole of yarn.  It occurs to me that the act of winding it means that I believe that I will knit it.  The act of wrapping it into a ball is an act of faith.  Friends bought this yarn for me, now I wind it and think of amazing people who love me.  I think of the miracle of friends who drive me to infusion appointments and friends who show deep care and concern for what this diagnosis means to our family.  I wind my stormy sea yarn and I believe that I will knit it and I think how very grateful I am for the friends in my life.
A boy runs up and I give him a kiss and the thought comes that all of mothering is an act of faith.  We hug them, we chastise them, we fill wading pools with water, always believing that what we are doing will somehow guide them into being lovely, caring, thoughtful, ethical humans who will make the world better in some small way.  We have faith that these boys will grow up to be part of a miracle for someone else.  That they will grow up to be the husband who says that a debilitating disease does not change one thing about his love, that they will tread lightly on the hearts of those around them, that they will report child rape at the risk of ending their sports career, that they will be miracle MEN.  I wind my yarn and have faith in my mothering and in my children.
I finish the winding.  Reluctant to leave the warm porch, I stay for a minute and watch the boys splashing water, listen to an older sister lovingly dote on them, soak up the sunshine and admire my miracle of a wound ball of yarn.  I dream about what I will make with it, because of my hands….in spite of my hands.  I have faith in the miracle that I will create, the miracle I will be a part of, the miracle I will watch unfold and fall off of my needles.  And I revel in the miracle of life that goes on in a wading pool, life that marches on in Colorado, life that lives in wonderful friends and eight amazing children and one breathtaking husband.  And I say a prayer of thanks and take my yarn inside and wait for the miracle.

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Weekly Meal Plan

I had several comments in favor of seeing more of our meal plans, so here’s our plan for the next 2 weeks:

  • Black Bean & Sweet Potato Enchiladas (we never made this off of our last plan, so still have much of the needed items)
  • Chipotle & Lime Chicken (from the book Today’s Creative Crockpot – TCC)
  • Apple Chicken Curry (TCC)
  • French Beef Burgundy (TCC)
  • Turkey (I’ve got a turkey in the freezer from last fall) & fixin’s
  • Turkey Tetrazzini (with the leftovers)
  • Chile Verde (this is a “cheater” recipe I’ve developed over the years, pork chunks & green enchilada sauce, misc. other stuff too)
  • Ginger Pork w/Pineapple (I’m going to attempt to make something up here….it may involve Trader Joe’s Island Soyaki Sauce)
  • Chicken Tortilla Soup (my own “recipe”, usually it’s a little different every time, I just throw stuff together)
  • Zesty Burger Soup
  • Korean Tacos (this is in the crockpot right now!) – this is another one that was on my last list but we never got around to making it.
  • Messy Mexican (we made this for house church last night and it got good reviews from kids & adults!)

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Meal Plan

I’ve been talking on Facebook about meal planning & grocery shopping, so thought I’d post my meal list for the next few weeks.

My challenge lately is that I am eating gluten-free, so I do my best to choose things that are easy for me to sub in a GF whatever when necessary.  For instance, I’ll have corn tortillas with the Korean Tacos instead of flour.  But it’s much harder when I choose meals that are pasta-heavy or have lots of other bread/flour/gluten items as a main ingredient.  And my other challenge is that the teenagers are so busy and Alex is working 2nd shift, so that often means our “sit-down” dinner is me, the 2 little boys and 1 or 2 of the big kids.  Then an hour or 2 later, the other kids trickle in and heat & eat when they get here.  So everything I make has to be easy to keep warm or easily reheatable and not something that is in the “cook and serve right away” category.

As usual, the list is mostly things that our family has had before and I know they enjoy, but a few new recipes to keep things interesting.  The new recipes above are noted with **.  I’m also doing my best to incorporate a few meatless meals now and then.

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A Day in the Life


I sometimes feel like I exist in this strange place of straddling two different “seasons” of life at the same time.   Most of my friends are living in one season or the other – either doing the toddler/baby thing or working through parenting older kids and teens.  It feels like it’s hard to connect with my Toddler Mom friends because we are dealing with a house full of teens and then on the other hand, it can feel difficult to connect with my Older Kid/Teen Mom friends because I’m managing toddlers too.  Each season has its own set of joys, frustrations and issues but because I’m dealing with both, sometimes I end up feeling like I can’t connect easily with my friends – either literally connect and physically get together or figuratively connect in terms of shared experience.

I guess this blog post is my attempt at giving friends a better picture of what our life is like.  Our busyness comes from the sheer number of people in our household and not from being over-committed (at least that’s what I truly believe).  We keep our kids limited to one activity each and Alex & I don’t have much on our dance cards beyond work and home life.  But I often feel like I let my friends down because I just can’t do as much, meet as often, or connect like they can.  I end up missing & rescheduling play dates with my Toddler Mom friends and I can’t do the ladies night out stuff – leaving the littles behind – that my Teen Mom friends can do.  And it’s a bummer.  And sometimes I feel badly about it.  And sometimes it’s a bit lonely. 

I have a few moms in my life who understand all of this.  But they are few and far between.  Our culture just doesn’t often have families with toddlers & teens co-existing.  And that’s ok, it just makes things more interesting for those of us who are out there.  There are parts of this that only another mama in a similar situation can understand.  I hope none of this sounds like complaining, because I’m absolutely not.  I love my life, I love my kids and I chose this.  But that doesn’t mean there aren’t ups AND downs to it all.

So anyway…..point of this blog post.  A day in the life (this past Tuesday, to be exact):

  • Monday night – I put about 8 pounds of beans out to soak in anticipation of what I’m going to do on Tuesday.
  • Tuesday 6am – get up with the baby.  make coffee.  work hard to make my eyes open.
  • 7:30am – I put beans in 3 pots on the stove to boil.
  • 8am – Alex wakes up and gets dressed & ready for work, he comes out & “tags” me so I can go get dressed.
  • 9am – I run up to the highschool because Olivia had a problem with her 2nd semester schedule and I needed to meet w/the guidance counselor to sort it out.
  • After I get back (it takes about 30 minutes,) we spend the morning eating breakfast, feeding the toddlers.  Hope & Duncan get some direction with their school work (they are both homeschooling right now – 9th & 7th grade respectively).
  • 10:30am – our pastor comes over to meet with us about the home church that we lead, he plans to be here for about an hour, it goes for about 1.5 hours instead.
  • noon – Alex leaves for work, he takes Hope and drops her off @ her meeting with her homeschool advisor.
  • I spend the afternoon feeding the boys lunch and wrangling them down for naps (which Tru fights and ultimately doesn’t take!).  Duncan gets some direction w/school work.  I make 2 or 3 phone calls for appointments, insurance, etc.  Maybe I eat lunch???  (there are a lot of days that I honestly don’t remember!)
  • 2:30 – I start chopping onions, celery, garlic for the burritoes I’m making with the beans.  Get the beans drained and everything ready for when I get back.  I’m also getting dinner ready at the same time – so soup is cooking on the stove.
  • 3:45 – I leave to take Duncan to the Kitsap Transit Bus Stop so he can take the bus into Poulsbo.  We are hoping this will be a workable way to get him into Poulsbo for his 2x/week  KCMT play practice.
  • 4pm – I come home and start mashing beans and making burritoes.  I finish the soup so it’s ready for dinner and I make 40+ burritoes to put in the freezer for after-school snacks and Alex’s lunches.
  • 5:15pm – my mom gets home and pours a glass of wine…..WOW!  It sounds great, but I’ve still got more driving to do!  The soup didn’t turn out so great for some reason, so I am working on a back up plan for dinner – adding toasted cheese sammies to make sure everyone is full & satisfied.
  • 6:15pm – the big boys call, they are done with wrestling and ready to be picked up.  I throw out my dinner instructions to everyone and then leave about 10 minutes later.
  • 6:30pm – Grab the big boys from KHS, run them home and drop them off.  I stay in the van and immediately leave again to drive into Poulsbo to pick up Duncan.
  • 7:30pm – I get home, start working the bedtime routine with the little boys.  Get them to bed and then talk to the big kids about big kid stuff, check in about homework, sports, wrestling, etc.
  • 9pm – The house is pretty quiet, the baby is nursed to sleep.  Big kids are in their rooms.  I eat something for dinner.
  • I spend the evening running laundry and folding/stuffing diapers.  I prop my lap top up so I can see it while I’m doing the laundry.
  • 11:30pm – off to bed I go!

The baby is still breastfeeding, so my typical day includes 3-4 breaks throughout the day when I sit down to nurse him.  That’s usually when I check email & Facebook.  The schedule also includes the normal diaper changes, toddler play time, fielding calls from teens looking for rides because they missed the bus (not happenin’, hope they wore walking shoes!), calls from my hubby and other misc. stuff.  I end up either leaving the 2 littles more than I like so that I can get stuff done more quickly or I have to take them with me and sacrifice naptimes and their good humor.  It’s always a toss up!

This is a fairly typical day.  Obviously it varies.  On Wednesday night, my day was slightly less hectic  and I wasn’t making a gazillion burritoes, but I had a meeting in Poulsbo from 7:30 to 9:30 and I came home and stayed up until midnight laundering Alex’s work clothes and ironing them as he was all out of slacks and clean shirts.

Today didn’t have meetings, but it did have a grand total of SIX round trips from the house to either Poulsbo or Kingston.  I am sooooo tired of being in the van.  And a teenager just walked into the room to let me know that she we have to leave the house at 6:40 tomorrow morning so that she can be at school for Jazz rehearsal.  *sheesh!*

I posted this thinking maybe some of you are curious.  And I posted it hoping that it explains to some of my friends why I don’t return emails or texts or why I totally space that we were supposed to get together.  Or why I just can’t drag my littles out of the house one more time.

Aaaah, the life of a big family!  I wouldn’t trade it for anything!  (but I would love to hire a personal taxi service!!)

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Meal Planning & Grocery Shopping

I ran into a friend at the grocery store last night and we chatted about meal planning, budget and how I do my shopping & planning.  I think I’ve blogged about this a bit before, but I thought it would be worth another post.  Here’s how I typically do my meal planning & grocery shopping.

First, I make a meal list.  Typically I make a list of 10-12 meals and this serves us for the 2 weeks between pay periods.  I do 2 “big” shopping trips each month, planning my meals and going to several stores for the different things we’ll need.  When Alex works 2nd shift, I tend to be even more on my game and we definitely go through almost all the meals I plan.  When he’s on first shift, we often end up only eating 8 to 10.

I write out my meal list and then go back and make the grocery list.  I usually have 1 page for Costco, Trader Joe’s & Central Market, with the page broken into sections for each store.  Then another page for the main grocery store trip (usually Albertsons or WalMart) and  I write out categories – fresh, frozen, dairy, meat, canned/misc – and then as I make my list I add needed items on the page or in the section where they belong.  This helps tremendously when I’m shopping!

I use the crockpot 3 or 4 nights a week and then I try to plan a few meals that are easy enough for the kids to make.  I also try to keep everything in the house for spaghetti or Sloppy Joe’s or something easy like that.  So for this round of meals, here’s what I planned:

All of the starred (**) recipes are new ones that I am trying.  I try to keep my list pretty full of tried-and-true stuff that I know the kids will really like and I know to be successful recipes.  The Gnocchi soup came recommended by a friend, so I’m confident in that one as well as the Indian food as I’ve cooked from that book a bunch and we love it EVERY time!  Everything else on my list, I have made a few times and most are “everyone loves it” type of recipes.

On this round of shopping, I hit Costco, Trader Joe’s, Albertsons & Central Market.  I just recently made a trip to the Bread Outlet so we are set on bread right now.  Sometimes I’ll go to the Grocery Outlet or Cash & Carry too.  Central is usually where I go to get any specialty produce I need or bulk foods or for their great bulk spices.  Trader Joe’s is the go-to for snack items for the little boys and for Alex’s lunches.

My totals this time around were:  Costco – $144.82, Trader Joe’s – $58.68, Central Market – $52.07, Albertsons – $142.75.  That will be our groceries for the next 2 weeks, with the exception of going to pick up milk or maybe fresh veggies for salads once the stuff I got from Costco runs out.  This includes toiletries, laundry detergent, paper products and other misc. household stuff as well as staples like cold cereal, lunch meat, yogurt, eggs, etc. for lunches and breakfast.

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