Thursday, February 26, 2015

How We're Doing

I am frequently asked how Matthew is doing.  For those who aren't aware, Matthew has multiple sclerosis, also referred to as MS.  He was officially diagnosed in 2005, although he started having symptoms as early as 2002.  So, here's what's happening:

Well, actually I'll take you back to 2008, when Matthew was finally put on a drug that actually worked:  Tysabri.  He had already tried Rebif and Avonex, both self-injections, which gave him terrible chills and cold sweats and didn't seem to do anything helpful.  In June of 2008, however, his healthcare provider introduced him to Tysabri, a once-a-month infusion.  Spending one day every month in the Portland VA wasn't great, but it was nicer than daily injections!  And the best part was, he didn't experience any side effects.  It kept his MS symptoms under control and allowed him to lead a fairly active lifestyle.

The only potentially worrisome thing about it was that there had been cases of Tysabri patients developing progressive multifocal leukoencephalopathy (PML), a potentially fatal brain disease.  However, blood tests were done every month for the first year, and every three months for the years following, so we felt safe in continuing.

Two years ago, in January of 2013, Matthew's regular blood test showed antibodies for PML.  They couldn't find any trace of the actual disease, for which we were very thankful, but the presence of antibodies was troublesome.  On the advice of his care provider, Matthew stopped the Tysabri treatments.

Things went downhill rapidly after that.

In March of 2013 Matthew was put on Copaxone, another self-injection drug.  The chills began again, and his symptoms actually seemed to be worse than the two months he'd gone without medicine.  He stopped it after only a month.

August 2013 brought another new medicine, this one fresh out of the testing stage:  Tecfidera.  This one was a twice-daily oral drug, a very new thing in the MS treatment world.  No more shots!  No more infusions!  Unlike all the self-injection drugs, Tecfidera appeared to actually control his MS symptoms, although not quite as effectively as the Tysabri had done.  Or maybe the multiple sclerosis was just getting worse?  It's hard to tell.

Whatever the case, in February of 2014 Matthew had to take a leave of absence from work.  He felt crippling pain at every moment of every day, usually listing a 6-7 on the 0-10 pain scale.  He could barely walk.  His temporary leave of absence turned into four months on short-term disability, thankfully paid for by his insurance.  He returned to work in June, not quite back to his old self, but good enough, by his estimation, to keep going.  He doesn't like to give up.

February 7 of this year, as Matthew drove his usual Saturday delivery route, his feet and legs suddenly fell asleep.  He shifted his position, moved around a bit to wake them up, but they refused to wake.

They still haven't.

He called in sick to work that Monday and Tuesday, hoping the feeling would come back to his feet.  By Wednesday, when his feet remained stubbornly asleep, he knew he would have to make the call about going on short-term disability again.

So, well, that's where we are now.  Matthew is officially on short-term disability from work, although we have yet to see a paycheck for it.  His sense of balance continues to diminish; this morning when he tried to stand up from his chair, he immediately fell back into it.  He says it feels like he's walking on stilts.

His eyes have also gone crazy, with his vision crossing and losing focus frequently in the past few days.  Yesterday he drove himself to an appointment in Salem and had to call me to pick him up, because he didn't trust his vision to get him home safely.  This morning he discovered that he has a blind spot in his left eye.  It's not always there; it's more prevalent when he's tired or stressed.  It leaves and comes back again. This means he won't be able to renew his commercial driver's license when it expires this week. Hopefully the symptoms will go away again soon! 

Matthew's energy levels are pretty much nonexistent.  In the mornings he gets up, if he can, and has breakfast with the children.  This exhausts him so much that usually he must collapse in his chair for an hour or two afterward.  He sometimes drags himself out again for lunch, if he's not too weary.  I've been making good use of the breakfast tray my mom gave me, taking food up to him when he can't manage the stairs.

Last summer Matthew put in a request to have his VA disability re-evaluated.  He is still listed at the baseline for MS.  Unfortunately, it seems that they "expect you to have all those symptoms,"so he was rejected.  We should probably file an appeal.

If you want to support us in our search to find a cure for MS, please consider joining Matthew's Walk MS team or donating to it.  We would love to have you walk with us!  And if you have any more questions about how we're doing, please feel free to ask.  We're glad to have you with us as we deal with this!

Tuesday, February 24, 2015

Building a Fence



This last weekend we built a fence.  Technically we already had a fence, but large sections of it had fallen down, which is not good for child containment, and it wasn't built very well to begin with, anyway.  So, we pulled out about half the fence and removed it entirely, and constructed a new fence to put in its place.  Saturday was for deconstruction and digging post holes.  We had originally planned on having two people do deconstruction (Noah and Richie volunteered eagerly for this) while two people constructed after them (that would be Fletcher and me), partially because we thought we'd have to do everything Sunday.  Fletcher usually works all day Saturday, and Richie had a friend over for the weekend.

As it happened, Fletcher took the day off Saturday for something else that didn't happen, and was available to work.  Noah, unfortunately, never emerged to help, so Richie brought his friend Liam over to assist, and we all did deconstruction.  I don't have pictures of Saturday because my phone was claimed by small children grieving at being banned from the work site.  Oh, wait--Noah did help for five minutes, unloading lumber from the truck before disappearing again.  Sigh.

So Saturday we took the faulty bits of the fence down, pulled a lot of nails, and broke rotting boards into manageable pieces before tossing them into the truck bed.  The boys took great delight in breaking the boards, feeling very macho, I'm sure.  When enough rubble had been cleared, Fletcher dug the post holes.  I assisted somewhat with those.

I should mention, at this point, that we likely would have gotten nothing done if Matthew and Carol had not been managing the small children.  I am so, so very glad that they were able to do that so I could work outside!  Otherwise either it would have been a 3-person team instead of a 4-person team, or else Paul would have jumped in and tried to do more than supervise, likely resulting in his shoulder getting damaged again.  And we were very glad for Paul's supervision!  We hadn't thought at all about leveling the posts or how to line them up neatly!

We wanted to get the posts set Saturday, so they could dry overnight, but it got too dark and we had to stop work.  Fletcher came over early Sunday morning so we could get that done and give them time to dry before doing the rest of the fence.  There is exactly one picture of this stage, taken by Paul:

We set three fence posts, plus two "extra" posts that will eventually hold a platform for the kidlings to play on.

After setting the posts we cleaned up our work area a bit, then Richie and Fletcher hammered planks in to repair the fence on the east side while Matthew and I made a run to Subway.

Rowan and Henry had to help, of course--Rowan by banging a garden fork on our stone pathway, and Henry by digging dirt in the garden.  Rowan later dug up some potatoes from last year that had somehow been missed.

 After lunch we got into the serious fence building on the north side of things.  It was then that we first realized that Fletcher is a vampire, sans sparkles.

Richie dragged Noah out of the house shortly after this point and they left to walk the dog, so I took over building the fence with Fletcher.  Noah and Richie assisted when they got back.  I am particularly thankful for Richie's leather gloves holding back prickly branches so I didn't get stabbed while working.

We finished the fence around 6:00 p.m.--about an hour later than we had anticipated, but before dark set in!  And WOOHOO!  We got everything done in two days!  We're hoping to start building the platform Monday.  Our hardworking workers have offered to help us then, as well.  Suddenly a list of projects I've been wanting to do forever has begun parading itself in my mind.  Bathroom cabinets!  Play house!  Outdoor kitchen!  I guess we'll see how far our money and energy can take us.

And once again, I must laud Matthew for holding our home together while I worked outside.  It's entirely thanks to him that I had clean clothes to wear yesterday and today.  Carol prepared food so we didn't have to worry about dinner.  Thank you, thank you everyone who helped us get this project done! 

I just realized that I never put in photos of the finished project.  Here you go:

Friday, February 20, 2015

Friends and Thanks

There are some people to whom I owe thanks.  In this crazy world of diapers, children tugging on clothes, and toys getting flung everywhere, it can be hard to hang on to my peace and sanity.  I don't write as much as I want to--as I need to.  I don't eat, sleep, or shower as much as I want to.  Conversations with other adults are minimal, usually restricted to five minutes or less snatched with Matthew before someone hollers my name and I must clean up pee, fix a snack, let the dog in, break up an argument, or become a human jungle gym.

I know a lot of this is common to stay-at-home parents, so they will understand what I mean when I say that most days I feel like I'm teetering on the edge of a breakdown.  I fantasize about white, sandy beaches and turquoise water, with not a soul in sight, and blessed, blissful silence except for the gentle sound of the waves.  I'm hanging on to that dream, and someday I fully intend to whisk Matthew away to an island paradise for a week or so.

For now, however, I'm in the trenches, and there are certain people--quite a few, actually--who make life so much more enjoyable.  I want to publicly recognize them, so they know that I see and appreciate them.  In no particular order, here are the people who, at this point in time, most frequently help me to smile and laugh:

My parents.  You are so welcoming, so thoughtful and inclusive; you treat my stepchildren with the same courtesy you extend to all your grandchildren.  You offer to babysit even when you've had a long day and you really should rest.  You are generous, offering to pay for so much.  You are witty, mild-tempered, gracious, and fun.  You love adventure, which is surely where my children got it from.

My in-laws.  You have welcomed us in your home, which I know you insist is our home, since we're all in it together.  It's never easy to share space with another set of adults, but you have made it enjoyable.  You often fix breakfast and coffee for us; you watch the children while I go grocery shopping so I don't have to drag my children through the store.  You stay up late listening for small children so Matthew and I can sneak out for a quick date.  You take Rowan on excursions to see train shows.  You play Candy Crush with Henry, who delights in that special time with you.

Savanna.  You are my sister-by-choice, godmother to my children and willing babysitter.  You are one of the Very Few non-relatives I allow to watch my children.  You snuggle Henry and allow Rowan to pet your hair.  (Believe me, I know how difficult that can be.)  You bake cookies with me and help me deliver them to UPS.  You take on projects so crazy that I can't help but laugh and join in.  You write, and help can pears, and then write some more.  You are a Slytherin by nature.  Shall I go on?

My sisters.  I was going to list each of you individually, but I feel like I'd be repeating myself in every paragraph.  You are so fun, so adventurous; you make me laugh when we get together.  I wish it happened more frequently.  You jog with me; you write with me; you have adorable children whom my own children adore.  Rowan often asks about Baby F and Baby P.  You watch my children when you can, and allow me to watch yours in return.  You share pictures and funny quotes, allowing me to share in the joy of your lives even when we don't see each other often.

Julie.  You call me, you text, you send cards in the mail.  I don't reciprocate nearly as much as I would like to.  You show genuine interest in my life and give sound advice.  You start me reading really good books like The Sword of Truth.  My children adore you with good reason!

Katy.  I so enjoy your wit and humor!  You make me smile; you let Rowan and Henry snuggle you when you're here.  You post videos and memes that brighten my day.  You let us borrow your daughter frequently, which is lovely.  You share fantastic dragons on my wall.

Noah.  You work with a will, even when it's work you'd rather not be doing.  You wrestle with Rowan and let me take pictures.  You help me in the kitchen and you make really good taco meat.  You find hilarious and/or cool videos and share them with me.  You also have excellent taste in music.

Richie.  You have very strong opinions but are cautious in expressing them.  You think before speaking.  You brighten Noah's day, which in turn makes me happy.  You eat the cookies I make and ask for more, which is the highest compliment a baker can get.  You find and play fabulous piano music for me.

Fletcher.  You speak with enthusiasm about Transformers, Star Wars, and Skulduggery Pleasant.  You drink tea and eat the food I put in front of you.  You take Rowan to the park for lightsaber duels, sometimes lasting two hours.  You are willing to work when the opportunity is presented.  You sit and chat and keep me company while I'm working in the kitchen.  You have become an integral part of one of my trios of friends.

Matthew.  I had to save you for last, dearest, because I am the most thankful for you.  You brighten my days and warm my nights.  You retain your fabulous wit and humor in the midst of crippling pain.  You text me love notes across the room.  You make tea for me in the mornings.  You kiss my hand like I'm a fancy lady.  You read with Rowan and Henry.  You surprise me with Roald Dahl books, then get the audio books from the library.  You walk to the pub with me for date nights, even though it's increasingly difficult for you to stand and keep your balance.  You compliment me to make me blush like a little girl.

There are so many more people I could mention; ones who chat with me in the park or post humorous things on Facebook.  I am thankful for all of my friends; if I had no reason to be thankful, I probably would not stay friends with them!  These are the ones who particularly make my life pleasant, when the stresses of the day make me want to curl into a ball and hide for three years.  They help me feel alive and human again.  When I'm upset about Matthew having to go on disability from work, or all the laundry piled to the ceiling, or trying to reason with my autistic children, or any number of things--these people are my de-stressers.  I love you all so much!  Thank you for being a part of my life!