Day 19 – Thirty Days of Thanks – more summer blessings

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We are indeed thankful for lovely days like today! How so? Here are a few ways:

1. Sunshine – Even when I’m not outside, I love being able to enjoy the lovely light… in the morning, it isn’t too hot yet, and it’s nice to be able to enjoy a little bit of the fresh air.

2. Air conditioning – One MS symptom that can be particularly frustrating this time of year is extreme sensitivity to heat. (By this, I mean temperatures above 74 degrees.) Heat is “my kryptonite,” and air conditioning makes it possible for me to function during warmer seasons. Thank you, AC!

3. Fresh berries on morning cereal – What a blessing it is to have freshly picked blackberries on the morning cereal!

Angie on the new porch glider. :)
Angie on the new porch glider. 🙂

4. New porch glider – With a special gift card I received at the completion of my Kids Hope ministry time, I purchased a porch glider (that was nicely put together by my very talented husband, as it arrived in a box, in pieces). Now we have a shady space where I can sit and enjoy the breeze, with T.R. and I can sit together. (Or I can safely go there on my own… when one isn’t extremely mobile, it’s nice to have these spaces.)

5. A final late wake-up morning – With plans we have this weekend, next week, then with school coming quite soon, this was really the last morning without an enforced wake-up time for our daughters. I rested also, of course, but not quite as long. 🙂 It has been nice to have the extra rest that summer brings!

Day 15 – Thirty Days of Thanks – Different beach view

While growing up, I enjoyed times we would go to a “beach,” those these moments usually included a sandy area beside a small lake. I may swim a bit, but I would always look for shells, rocks, or other treasures.  Even when I graduated to occasional saltwater visits, my goal was the same: shells, perhaps? Wading along the waves was fun also, and I loved observing the natural wonders that culminate with winds, currents, and wildlife.

TR Angie beach chair
T.R. and I “combed the beach” together with the beach-friendly chair.

As our family time near Lake Michigan neared its close, T.R. and I were able to visit the beach. This may seem like a regular occurrence to many of you, but you have to realize that a regular cane, walker or wheelchair cannot manage travel on a sandy beach. Enter the “beach wheelchair,” one with tires made just for such an excursion. And this leads to today’s list:

5 Bits of Beach-related Thanks

  1. Calming sounds of water – I love the sounds of the lapping IMG_7012waves, punctuated by the occasional gull.
  1. Patient husband who wrestled successfully with the chair – T.R. was able to conquer the chair that doesn’t like to turn so that we could visit the shore together.TR Angie beach
  1. Shells –
    Angie shells
    admiring the lovely shells!

    He gleaned several small shells for me from the sand… we knew I wasn’t going to be crawling on the beach then successfully standing back up, so T.R. brought several shells my way. (They came home with me, of course. 🙂 )

  1. Beach sunsets – This wasn’t the same day we rented the chair, but we were able to see the sunset from the boardwalk in front of the beach.
  1. New family memories – Because heat and MS do not coexist kindly, I know that I will never be with T.R. and thefootprints girls on a Florida beach, but it was special to watch as my husband and daughters traipsed through the sand. Special memories won’t be washing away as quickly as the sand, I am certain!

yDay 8 – 30 Days of Thanks – Needles and more

One day each month, I get to be “needled,” you could say. It has been almost eighteen years since I was diagnosed with multiple sclerosis, and during that time, I have referred to myself as the “poster child of MS injectable therapies.” (At that time, there were only four, and I had spent significant time on each of them.) There are now more than ten different therapies, and I have added two more to that first list of four.

So why one day each month? My medication, Tysabri, is administered once a month… I’ll explain more in today’s thankful list.

5 Things I’ve learned to be thankful for due to MS treatment:

  1. Neurology professionals – The doctors and other professionals who help treat this disease are so appreciated!
  2. Tysabri –
    FullSizeRender
    Carma decided we should celebrate my 100th Tysabri infusion
    Of the medications we have tried this monthly medication has done a better job slowing disease progression than the previous ones did. As such, we just found in May that it was 100th infusion month… I joked in April that we would need to celebrate this in May. I actually did bring in a “100” cake to share, but the special nurse with whom I had spoken did put up a sign. 😊
  1. Nurses! – I first learned to appreciate nurses when growing up in the home of a doctor and nurse, but I have gained greater appreciation as I’ve watched them start an infusion and set up an IV infusion during that monthly time.
  1. MRI machine – Today wasn’t an MRI day (this was a month mri of msbrainago), but I am indeed thankful that a doctor can see inside my brain and spine without making an incision.
  1. Needles – I’m the first to admit that I am not fond of needles. (Talking about medical use, not embroidery.) But you know what? I am thankful that medication can be sent straight into the bloodstream! How cool is that?! If I can close my eyes as a trained nurse does the tough part, all the better.

http://www.fwnc.com/

“Beware the Chair”?

lessons to be learned from a campaign gone awry

When I was first diagnosed with MS in 1997, I must say that one little fear I had was that of “ending up in a wheelchair.” I wasn’t certain what that might mean, and the unknown was a little disconcerting. Since that time, I have learned so much about mobility, stereotypes, and… well, life in general.Knight-110

As it was, seven years passed before I started using a cane to keep my balance. Another eight or so years, MS had expanded its reach just a little, and a physical therapist officially informed me that I was to use a walker when moving around of my own volition, as my sense of balance and coordination just didn’t work
together enough to keep me safe. (I likely should have made this move earlier, as I’ve tasted a little more pavement, concrete, dirt, and flooring than I had ever intended. And no, I did not plan any of these taste tests.)

So I do use a walker regularly, and friends and family have gracefully become accustomed to folding this contraption to bring with us in the car when we travel. But the walker requires legs with  enough energy to walk, and to do so at a reasonable pace. Because of the amount of energy it takes to traverse some spaces, we do often use a manual wheelchair.

trandangiemacinacI view the wheelchair as a useful, appreciated tool, a helpful piece of equipment that allows me to attend events, visit museums, go shopping… to experience life, really, without fear of buckling legs and kissing the pavement. This is likely why a recent campaign rubbed me the wrong way. I believe “Beware the Chair” was meant to warn women about the importance of taking care of their bones, avoiding osteoporosis, so they wouldn’t “end up in a chair.” A remote control wheelchair chased women, meant to scare them into considering bone health. Really?? Are we meant to view wheelchairs with doom and disdain, and is this really going to assist women as they tackle low bone density?

These questions were tackled beautifully by Emiy Ladeau in a piece she wrote for The Huffington Post, “Beware the Scare tactics.” As one who does use a wheelchair due to disability, Emily attacks the fright attached to the use of a chair, rather than fear of bone deterioration. The biggest lesson from this campaign came the day after her piece was published online. The organization that first posted the ad at www.bwarethechair.com completely retracted the campaign as it was, offered apologies and directIng viewers to information directly related to osteoperosis and ways to maintain bone health.

Why is this hitting me today, of all days? June 3, 1997 was the day I sat in a neurologist’s office and heard a diagnosis of “probable multiple sclerosis.” I didn’t know what this meant, and I know I was wary about a lot of things, but I am thankful that people like Emily Ladeau work to reduce the stigma associated with disability. As she recommends, I hope I can “make disability issues accessible to the world.” Maybe I can help these issues that were invisible to me before June 1997 to become more obvious. I’ll keep plugging away in the weeks to come – we have a lot to learn together here in Grant County and beyond!

MS Awareness Month – March (plus eleven)

March is nearing its end, and when I wrote this editorial a couple of weeks ago, I never would have imagined that our “spring” would bring snow days – and almost a foot of snow the first Monday of spring break. Wow! In this way, I suppose MS is a little like Indiana weather. There may be an expected forecast, but unpredictability reigns.

The editorial will appear later this week in our small, local newspaper. In the MS article published two years ago, I compared MS to an Ivanhoe’s shake, so this year I thought I’d use a different analogy, the “myelin as an electric wire protector” one. (Two days after I wrote this piece, I saw Dr. Oz use the same example. I don’t normally view his show, but I was watching an interview with Meredith Vieira and Richard Cohen. And what a lovely interview it was!)

So without further ado, here we have it:

MS Awareness Month

Spring has been a season I have favored for as long as I can remember, but it has taken on new meanings in recent years. March doesn’t just mark the start of spring, but it has also been declared “MS Awareness Month.” Since a June 1997 diagnosis, every month has fallen into this category for me.

So what is MS anyhow, and why do we need to be aware? Valid questions. Multiple sclerosis is an autoimmune disease, meaning that the immune system, which usually attacks things that make us sick, is misbehaving. With MS, the immune system attacks the coating of the nerves, a fatty substance called myelin. Imagine that your nerves are electric wires, and the myelin is the protective rubber coating around the said wires. Then the renegade white blood cells snip away at parts of that myelin “rubber coating.” When a power cord has this type of damage, it can cause a short circuit. Lights may flicker or darken, depending where the electricity was headed. Your biggest bundle of nerves is one that you use whether or not you’re thinking about it; you need it in order to think, in fact. The brain is, essentially, a huge, organized bundle of nerves. For an MS-laden immune system, the brain seems to be the main target. 

This leads to the reason for the name, “Multiple Sclerosis.” Multiple means many, and Sclerosis refers to scars. What happens when the myelin is stripped away? Scars, or lesions, are left behind. Where? The brain, of course. And this leads to that need for “awareness.” You see, the brain is responsible for quite a bit. Imagine if your home had shorts in the wiring at various spots. More than just flickering lights, your doorbell may not work, the furnace may fluctuate, your computer may flash new error messages, and the electrician would have quite a job in store. Scars in the brain can act this way also, affecting mobility, energy, balance, heat sensitivity, vision, speech, memory, and so much more. A few shorts may only affect the lights in the attic, and a person with MS may not experience very many symptoms. But one trait these both share is that the cause of the problem cannot easily be seen.

Do you know people who face MS? Whether or not you realize it, you likely do. Fourteen years ago, just a few weeks before we moved, I discovered that our next door neighbor had MS. I had not realized this, as it was “invisible” in many ways. In the United States, 400,000 individuals currently face MS, about two thirds of these female. A person with MS may experience all or only a few of the symptoms mentioned earlier, and this may change. MS symptoms can come and go, and they aren’t very predictable, though they often become worse during stressful times or in hot weather.

So what to do? The good news is that although there were zero medications to fight MS twenty years ago, there are currently nine available. There isn’t a cure, but we are so much closer than we were. Medicine can help slow progression, and more answers are found each day. There isn’t a single, clear cause for the onset of MS, and there likely won’t be a single, clear cure, but continued research and awareness of this disease and its effects are key.

Summer used to be my very favorite season, but MS has pushed me to shift, as my body just can’t tolerate heat. I do adore new life that begins showing its intentions in spring, and my hope and prayer is that this “MS Awareness Month,” we can gain understanding of these hidden scars that affect our friends and neighbors with MS. As spring progresses, we can know that we’re each day brings us closer to a cure.