Life with MS & EDS

July 29, 2009

Making Promises

My girls were schedule to have their first swim lesson yesterday afternoon.  Neither knows how to swim and both are terrified about the idea.  Little Sister had some exposure to pools when she received water therapy.  Her occupational therapist was awesome and actually got her to go under water a few times.  But, the relationship between the hospital and the pool wasn’t going well.  We’d show up and the facility wouldn’t have the appropriate chemical levels in the pool or something else would go wrong and we’d have to leave.  Do you know how hard that is on a little kid who got psyched up to do something and thought she’d have fun, only to see the pool and be told you can’t go in?  Or how hard this is for the mother who got her daughter all ready to go, including picking her up early from school and driving 30 min. to get there?  After this happened a few times, we ended up on land for the rest of those O/T sessions.  Taking a gamble on the pool just wasn’t worth the potential disappointment.

It’s been about 18 months since Little Sister had a chance to do much in a pool.  We’ve been to a couple of pool parties, but it’s hard to find a pool warm enough for her to go into.  She turns blue very quickly.  A few months ago her school had a pool party at a warm water pool that is on the location of her day care site.  My husband and I got to chatting with the lifeguard who mentioned they did swim lessons.  It’s a senior citizens’ therapy pool, so they keep it warm enough for her.   Heck, I’d love to use it!  The water is kept around 90 and the air temperature was in the high 80’s.  I know warmth and MS are not a good mix, but also having EDS throws a wrench in what makes a perfect temperature.  The pool I used to exercise in was kept too cold for my comfort.  I’d also be blue after a while and my toes would cramp up so badly I’d have to call it quits.  But, back to the point…

I called the pool just after the party, but the two instructors were not available and I was told to try back in a couple of months.  So, I called again a couple of months ago and didn’t hear back.  I’m sure the voice mail wasn’t received.  I called back just recently and got the names of the two instructors.  I called the first and she was able to do four semi-private lessons with us. She could even do one before we left for Disney (where we’d have a pool at the rental house for a week for them to practice and get more comfortable.)  AWESOME!

Yesterday Big Sister comes home from camp and we rush to get her ready for her lesson and head out to get Little Sister.  Big Sister was so incredibly excited.  She even made a picture for the teacher instead of doing free swim at camp that afternoon.  She also admitted to ducking swim lessons at camp in favor of a different sport instead.  But, she was excited to learn how to swim and even promised to try to go under water (the theme of her picture).  We hurry over to daycare and rush Little Sister out the door.

We drive around to the other side of the building, not wanting to have to walk through it all wet on the return.  We go in and pay for the lessons and head off to the locker room to change Little Sister.  I think I got a funny look or two from the older ladies who realized I was still changing diapers on someone her age, but I just smiled and kept moving along.

Then we had out to the pool.  A couple of women were doing laps, but no sign of the teacher.  A gentleman was cleaning the deck, so I asked him if he know anything.  He was very nice and made a call, but didn’t have any indication that the woman was coming.  I had already left her a voicemail message from my cell, but she didn’t call back.

So, after waiting for 15 minutes, we gathered our things and the girls began to cry their little eyes out.  I felt so bad, but I was also really, really angry.  People really shouldn’t make promises to kids and then not follow through.  The girls cried the whole way home.  I had them keep their suits on, so they hopped into our oversized tub when they got home, but that wasn’t the same.  We felt so bad that we even got them McDonald’s for dinner.

I sure hope the girls are willing to give this another try soon.  I’m not giving up until they are comfortable around water.  I love to swim, although I rarely get to do so.  I can’t wait to have access to a pool for a week.  I hope to be able to teach them a little bit this week and hope that their cousins, who love to swim, will rub off on them and teach them a trick or two.

July 28, 2009

New Shoes

Filed under: Uncategorized — by mseds @ 10:12 am
Tags: ,

What’s the best way to ease the arrival of your next shipment of MS drugs?  Order something you can’t wait to get to arrive at the same time!

This morning the big brown truck drove past my office window and instead of feeling glum about it, I raced upstairs and greeted the driver.  In his hands were two boxes: one marked “PERISHABLE!” and the other containing what I really wanted – my new shoes!

It occurred to me that it was finally time to part with my beloved Dansko Lolitas.  This is their 6th summer with me and I wear them almost every day from May through October.  They are starting to show their age:

Good-bye Lolitas

Good-bye Lolitas

I got them the summer before I became pregnant with Lil Sister.  I was finally in a place in my life where I could upgrade from Payless and get a decent pair of shoes.  I had heard many people I know talking about Dansko and decided to check them out.  I went to this fantastic shoe store in Congressional Plaza on Rockville Pike and started trying on shoes.  I instantly fell in love with these Lolitas.  It was hard to justify spending around $100 on sandals, but handed over the credit card anyway and haven’t regretted the decision.

A good pair of shoes is worth every last penny. Contrary to what my closet may look like, I’m not shoe person.  I buy shoes as much for comfort as for how they look, with comfort pulling rank.  I’ve tried buying other shoes in the past, but they tend to sit in the closet.  Since I can’t wear my sandals year-round, I have two other shoes that I’ll wear: my Clark ankle boots and my Lands’ End mocks.  When I found out they were discontinuing my favorite Clarks, I went to the outlet and managed to find one of the last pairs in my size.  I’m not sure what I’m going to do when those wear out.  Once I find something I like, I’m hooked and it’s hard to change!

That leads me to this morning.  I tried to buy another pair of Lolitas yesterday.  Of course it’s July and stores are clearing out sandals to make space for winter items, so selections were slim.  I wasn’t about to drive down to Maryland to get new shoes, so I had to find a new place up here.  I called around and the Walking Company store near me seemed to have things left in my size.  The guy there was really nice, but nothing in stock appealed to me.  I headed home and went to their website instead and searched around a few other places, too.  Turns out the Lolita is being DISCONTINUED!!!!!  WAHHHH!!!!

I need new shoes as we are heading to Disney in two days and from the looks of my current shoes, I’m not sure they’ll take well to 9 days of walking.  The Walking Co. will ship overnight for $10 if you order by 3.  I found a new pair of shoes that seem to be the replacement for the Lolitas called the Moriah.  So, at 3:02 I placed my order (was later than I hoped) and sure enough they were here this morning with my Copaxone.

I have them on now and LOVE them already!  Lolita and Moriah will accompany me to Disney and I hope to be able to part with Lolita permanently while we are there.

July 22, 2009

Making Veggies Unhealthy

Filed under: Uncategorized — by mseds @ 9:39 pm

Summertime usually brings healthier eating around here.  We have a garden out back that my husband does 99% of the work on (the girls may have thrown in a few seeds or picked a veggie or two over the years and I just get to enjoy what comes out of it when the groundhogs don’t get to things first!)  We also belong to a fantastic CSA (Community Supported Agriculture) organic farm just minutes from here.  Between the two, we end up with a lot of veggies and fruit.

We had a ton of zucchini and one of my favorite things to do with this healthy veggie is to make it completely NOT healthy.  Tonight I grated up 8 cups worth of it (with some help from my husband) and made a ton of zucchini bread.  I made 4 batches of it (which ended up being 6 regular size loaf pans and 7 mini loaf pans) and it took about 2 hours to get together, not counting baking time in the smallest oven known to Sears.  It’s amazing I got it all into the oven.  I had help with that part, too.

So, in another hour or so I’ll have a ton of homemade zucchini bread that can be frozen for future use.  Here’s the recipe if anyone is interested in giving it a try.  It’s my friend’s mother’s recipe, altered slightly.  Don’t even thing about calculating the Weight Watchers Points for this one.  It’s not pretty!

Jen’s Mom’s Zucchini Bread


3 cups sifted flour

1.5 tsp ginger or ground cinnamon

1 tsp baking powder

1 tsp salt

3 eggs

2 cups sugar

1 cup cooking oil

2 cups grated unpeeled zucchini (remove any large seeds)

1 cup chopped nuts (suggestion: ½ cup pecans and ½ cup walnuts)

½ cup chocolate chips (optional)

What to do:

Preheat oven to 350 degrees

Combine all dry ingredients

Combine all wet ingredients (including sugar)

Add the dry to the wet

Combine and pour into loaf pans (approx 2 8×4 pans)

Bake at 350 for 1 hour and 10 min. or until toothpick inserted into center comes out dry

July 21, 2009


The past several weeks have been pretty decent.  I finally felt the positive effects of the lovely Solu-Medrol steroid experience.  Still being awake at 11 p.m. as opposed to exhausted by 8 p.m., not having any numbness in my left arm, and having still lips was worth it.  Never thought I’d say that!  Lack of exhaustion was certainly the best part of things.

Life has been keeping me pretty busy and certainly quite occupied.  The girls are having a great summer and we’re getting down the shore pretty often.  As a full-time teleworker, I’m fortunate that I rarely ever have to travel.  However, the past 4 weeks brought 2 unexpected trips.  One was for training in Baltimore and last week I ended up in Chicago for a great meeting (yes, surprisingly those do exist.)  It was my first time flying with Copaxone.  I put everything into that blue plastic travel case, shoved it into my laptop backpack and off I went.   At the security check-point, I unloaded the blue box along with my laptop, BlackBerry, iPod, and shoes (thanks a lot, shoe bomber, for making me have to stand where thousands of other people have stood without their shoes on – yuck) and through the metal detector I went.  As I was walking through, the TSA guard asked what was in the box and I said it was my medication.  He said I didn’t have to put that through separately.  Nice to know, but it just seems safer to pull it out than to have them wonder what these pre-filled needles are on the x-ray monitor.   I took it out on the return trip, too, although those people didn’t say anything.

Later this month we’re taking a family trip to Disney and I cannot wait!  I’m concerned about the heat as well as how much walking Little Sister will be able to do.  To test things out, we didn’t take the stroller on the boardwalk this past weekend.  She made it about a mile before she started complaining.  My husband, complete with a very  sun-burned back, had to carry her home the last 3 blocks.  This was without her DAFOs and with little stopping.  I can’t imagine that we’ll have an uninterrupted mile+ long walk while in Disney, so I think we’ll be okay.  I’ve built in break time and will arrange for shows, longer rides, etc. to split things up.

Planning these trips has been a nice diversion.  I’m also hosting a birthday party for my best friend 2 days after we return from Disney.  Having things to plan is a great way to occupy time.

Yesterday also brought great news!  When we moved here a few years ago, my work was stable, but my husband has been dependent on contracts, which have been slow coming the past 2 years.  After a bit of a drought, he got a great contract about 2 months ago.  It was fantastic to know that things would be steady for the next 6 months.  Never in a million years did we expect he’d get a call last night with an offer for a full-time job!  It’s also full-time telework with minimal travel!  We are so fortunate.

So, as you can see, things have been going pretty well.  Aside from that strange instance of vertigo and my eyesight not improving, health-wise things have been unremarkable.  I’ve been a bit more tired lately, but I’ve also been very busy.  I’d like to blame it on that and not the effects of the steroids going away.  I don’t want to do those again anytime soon.  Even my hip, which was giving me a lot of pain when walking long distances, has been great!  Walks on the boardwalk used to do me in, too, but I think the monthly chiropractor appointments are really helping.  It’s strange how being in alignment makes such a difference.

Reality has sunk in that I have MS and that’s just the way things are.  This was my primary focus for so many months.  It’s nice to have these other things to concentrate on now.  I suppose I’ve reached the “acceptance” phase.  Reality did creep up on me last night though when I was doing online check-in for the Breast Cancer 3-Day.  Phase One includes a medical questionnaire.  For the first time I had to check off “other” and put in not only Ehlers-Danlos (which was new last year), but also “Relapsing Remitting Multiple Sclerosis.”  Honestly, I don’t think I’ve ever written that out before.  Heck, I never even spell out MS anymore.  I found myself checking the spelling to make sure I had it correct before hitting submit!

July 8, 2009

The Room is Spinning

Filed under: Uncategorized — by mseds @ 8:22 pm
Tags: , ,

I had my first experience with vertigo this afternoon.  I was sitting at my desk typing.  I was looking down at my keyboard and looked up to my monitor and the room started spinning.  It was very strange.  I didn’t feel out of sorts or anything, but the room was definitely rotating.  I was IMing a friend and mentioned it to her and IMed my husband to let him know in case things got worse, but it went away within a minute.  It was really strange.

Apparently vertigo is experienced at some point in about 20% of MS patients.  Somehow that doesn’t surprise me.

July 6, 2009

No, my husband doesn’t abuse me

This weekend we had a fantastic time down the shore for the 4th of July.  It was the best 4th of July weekend I’ve had since before Little Sister was born.  Five years ago we were sitting around at home waiting for her to be born any day.  Four years ago, she was about to turn 1 and was very sick.  Three years ago she was also sick and it was one of our many trips to the urgent care center while at the beach.  Two years ago, she could finally hear well and was scared to death of loud noises, so no fireworks for me either.  I think she was sick then, too, but honestly most of her high fevers are a blur now.  Last year we were at home instead of at the beach.  We did get to see fireworks, but it was from very far away because she was still scared to bits of the noise.

This year, now almost 5, she finally agreed that it was okay to see the fireworks.  We sat on the beach and she watched them in my lap.  She spent the first 5 minutes or so with her hands over her ears.  We were far enough back that they really weren’t very loud and, even more important, we couldn’t feel them!  I finally convinced her to take her hands off and we had a great conversation.  She loved the fireworks!  It was such a fun night!

The only downside of this wonderful weekend away was that two nights involved arm shots.  Arm shots are still going very poorly.  Both Thursday and Friday’s shots were painful and there was a good amount of blood.  My arms bruise from the Copaxone shots in a way that other shot locations don’t.  For days afterward, I have big, three-inch red circles in the shot location.  It itches terribly, too.  It’s not as bad during the winter because no one sees them, but it’s hard to hide during the summer.  We were getting ready to go to the beach and I was joking about the bruises with my husband.  He suggested that I need a t-shirt saying, “No, my husband doesn’t beat me.  I just have MS & EDS!”

Hope you all had a great 4th!

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