Archive for family update

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.
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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.
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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.
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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.
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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.

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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.

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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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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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1 down, 7 to go!

Our weekend involved watching our oldest son graduate from highschool.  What an amazing experience!  It was just SO COOL.

Alex & I thought we would be crying up a storm, but surprisingly, we both held it together.  Our oldest daughter, Olivia was the one who did most of the crying!  She was just so sweet, thinking about her big brother being gone soon & our family changing brought her to tears.  She is in the high school band and they were playing @ the ceremony, so we could see from the stands that she was crying.  It took us a while after the event was done to make our way through crowds to find her and as soon as she got hugs from mom & dad it just brought on more tears.  She has such a tender heart and we both felt like it showed the bond that the kids have with each other.

Graduation ceremonies were Saturday afternoon, then Nathan went on the Senior Grad Night that evening.  Then Sunday afternoon, we had friends/family out for a BBQ in his honor.  When we got home, he opened his cards and while passing them around, all the other kids got a taste of what gets put into graduation cards (moolah, baby!) and they were all very motivated to get themselves graduated!

The kids decorated the van windows w/paint pens and Nathan thought that was pretty cool.  Unfortunately, I didn’t get any pics before the rain that came right at the end of the party yesterday.  We also learned lessons about what pics to try to remember to get for next time as we didn’t snap any of Nathan alone or of just Nathan, me & Alex.  But we got some others with his grandparents, which I’ll share.

Nathan with grandpa Buxton, grandma Terri, dad & grandma Buxton (this is Alex’s mom & her parents).

Nathan with “Goppy” (my mom).

Now Nathan will be busy studying for his ASVAB (military test) and getting a physical in preparation for pursuing his plan of enlisting in the Air Force.  He also has plans of finally getting his driver’s license.  And now Alex & I will have to begin to make the adjustment from having 8 “kids” in the house to having 7 kids and one “almost-a-grown-up”.

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The Big Move

pic by Katie McClelland

We are a family of 11, about to be displaced from our home by Bank of America.  Because of our unique situation, we thought it would take much longer to find a rental home than it actually did.  We were blessed to find a home that is almost new, with plenty of space for our kids & my mom and that keeps our kids in their same school.  A big fear in looking for a home was that we would have to move 4 highschool kids to a new school district.  We are so thankful we don’t have to do that!

We have been working hard over the last few years to pay off vehicles and debt so we are now 99% debt free – we have no credit card debt, we own all our vehicles outright.  We just have one small personal loan we are working on.  It’s such a great feeling!  We had to empty our savings last month to fix the transmission on our 15 passenger van – the only vehicle that will fit all of us.

So we have found a new house.  And it’s perfect for us.  The move will be bittersweet as we don’t really want to leave the home we built, but the new house is really nice so that does take the sting out a bit.  Of course, moving is expensive.  And the first/last/deposit required by a rental really adds up.  And as I said, we just emptied our savings account, and we do not want to go into debt yet again when things seem to just be getting better.

So we sat down and did some brainstorming.  What could we do to raise the money we need rather than borrowing it?  We came up with some ideas and we will all be making sacrifices in order to make this move happen without incurring a financial burden.  Over the last year as friends & family learned about our situation, so many people asked how they could help.  As we were dealing with the bank and trying to redeem our home, there really was nothing anyone could do.  But now there is!  We have ways for our friends & family to help and we are going to take you all up on your offers now!

Take a look at the things below and if you feel like you can help in any way, please get in touch.  We have appreciated your thoughts, prayers & support through this time and we will continue to need that!  Thank you for your friendship – it’s the biggest help of all.

Ways we are working to raise money (and things you can help with):

  • We are participating in a yard sale @ Bayside Church in Kingston on June 4.  If you have anything you can donate to our part of the sale, that would be great!  Even a box or 2 of household items in good condition would add to our table & help bring in some funds.
  • Boxes!  We need them.  We’d love to not have to spend money purchasing them.
  • Our Chip-In is up.  A few contributions of even $10 will start to add up.
  • I’m hosting a raffle for a loom & some yarn.  Details will be up in another blog post shortly or if you are on Ravelry, you will be able to find info there.  If you are a knitter or fiber artist, you can get a couple of chances to win these great yarny prizes!
  • As we begin to pack & move stuff to the new house, baby-holding and toddler-watching will be so necessary.  If you have a few hours that you can come over and help with the littles while I pack, that would be great.

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Almost exactly one year later…..

It’s been a year.  I just popped over here to see what the last thing was that I had posted & I found summer pics of a very adorable, very bald-headed baby.

He is still very adorable, but with a TON more hair.  Check out some recent pics of the boy:

This is @ the Kingston 4th of July “Tiny Town”.  He just made this super cool necklace!

Here he is with his freshly made visor AND cool necklace!

This was him hugging the yarn we picked out for his new sweater.

Here he is modeling the sweater I just finished for him.   He was sooooo excited about it!

This was his “America’s Next Top Model” pose – he’s being coached by his sister.

And here’s one of me…..it’s a few months ago & my belly is bigger now, but you get the idea!

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