Uncluttered Desk, Uncluttered life


Clutter really, really stresses me out.  I know this about myself, yet, despite last week’s rant about taking care of us (the caregiver), I had a very messy desk going into the week…actually, it was a mess since the new year.  I was also VERY stressed – like, experiencing physical symptoms of stress.  It’s true, I juggle a lot.  My “big items” include:

  1. Taking care of two kids with special needs (Scoliosis), one that I am flying out of town with next week to get a new brace!
  2. Managing a business that supports and comforts Scoliosis patients
  3. Playing in a great band (My fun!…but still work)
  4. Taking Karate classes with my son
  5. Heading up my son’s First Tech Robotics team at school
  6. Getting my daughter to her many events
  7. In some times of the year, being in or helping to direct Musical Theater
  8. Trying to eat well and exercise (a constant time commitment)
  9. ETC

But, the fact is – we ALL juggle a lot.  And, the stress really takes a toll.  A wise person said to me on Tuesday “What CAN you do, right now, to reduce your stress?”  Well, she also told me to STOP TAKING ON MORE STUFF, but I have already been trying to do that (I have this thing about honoring my commitments, though, so it takes time)  Anyway….my answer to her was that I really needed to get my office organized and my desk cleared off.  It seemed like too simple of a task to really have benefit, but, when I vocalized it, I realized that it would help a  lot. And, I needed more photos of kittens in my office and a cute kitten notebook to write my to do list on, but that is besides the main point here.  So, that day, I invested a bit of money in organizing tools (and a kitten calendar and notebook, of course), and, now, Friday evening, I can say that I left my office with just as much to do, but much less stress about it. Walking into my office makes me feel peaceful and productive instead of crushed by stress.

But, this is just what works for me…today.  This isn’t going to work for everyone.  But, the fact remains that sometimes we need to pause, take stock of what ONE SIMPLE THING we can do to feel like we are more in control of the crazy to-do list, and take the time to do that one thing.  Those of you dealing with a new diagnosis of any illness, whether it be Scoliosis or another malady, may feel completely overwhelmed with information, data, questions, fears…you name it. But, just remember that your person won’t be healed (or completely fall apart) in one day. Or one week.  Take a few moments to think of what YOU need to feel more in control, and take on that one item, so that you can better deal with the mountain you have to climb.  You may find that it’s just what you need to get over the initial ridge.

EDIT: by the way, a great tool that I also use for organization is TRELLO.  Look it up – it’s an app for your phone or tablet, too, and you can organize your life into “boards” and each board has “cards” and each card has a list – you can put employees on there, family members, etc. And, you can coordinate projects and information.  Great tool, and it’s free.  You can find videos about it online.  Happy organizing…



Who cares for the caregiver?


We, as Moms (and Dads), have all heard it before – the proverbial “put your oxygen mask on first” scenario.  It is hard enough as a parent to act on this, though, and much harder for those of us that are taking care of kids with special needs.  We KNOW we should be taking care of ourselves, because we KNOW that NOBODY else will if we don’t, but we still have lists full of calls to make, research to do, appointments to schedule…plus regular life…it’s endless.

I am here to remind you, though, that it is important.  You MUST give yourself permission to take care of yourself.  It’s a new year and we all have those new resolutions floating around.  As ALWAYS, mine is to win the fight over my eating, to loose those pounds that have been haunting me for years.  But, let me tell you, it takes WORK and, often, I have to let other things go so that I can meal plan, cook healthy, etc.  And, sometimes (bad Mother alert here)…I have to let go of trying to make my kids eat as healthy as possible so that I can continue to eat healthy.  Yes, yes…I know…the kids should eat what I eat. But, as wonderful as my kids are, I always win the “my kid is a more picky eater than yours” showdown, and some days it’s HARD to pick that battle.  So, I can spend hours trying to win the battle with them, or I can continue to chip at the war within me. Sometimes I can’t do both.  It’s tough to accept that I have to sometimes literally put my health over my kids’ health. What kind of Mother does that?  Well, the kind that realizes that I am the ONLY one who is going to prioritize my own health. And, the kind that realizes that, in the big picture, a healthy Mom will better be able to help her kids be healthier.  I lose a few battles in order to win the ultimate war.  I invite you to become my battle ally – let’s encourage each other in our daily battles of fighting Scoliosis, or whatever other issue plagues our children.  Because, hopefully if we keep reminding each other, eventually we will give ourselves that permission to look out for #1 just a little bit more.

Focusing on the important in 2017

Hi everyone.  I must admit, I’ve been lax.  The last few months have been a flurry of insane activity, as we deal with normal life with a middle-schooler and a high-schooler, and two parents with demanding careers.  Add to that a large boom in business (thanks to all you Scoliosis warriors that have tried and enjoyed our products!)…and, well, certain things (like this blog), unfortunately, fell to the wayside.  When busyness sets in, it seems nobody is safe from turning away from the “important” things and focusing on the “urgent”.

One of the required reading pieces in my college Entrepreneurship class was Stephen Covey’s The 7 Habits of Highly Effective People.  The concepts in this book have always stuck with me (and I probably need to re-read it), but one of the points I remember most is the concept of the “important” vs. the “urgent”.  You can read more on that HERE, but, basically, the important things are those that have great benefit in the long run – those that help us achieve our goals.  And, urgent tasks are those that have immediate consequences if not done.  Sometimes urgent tasks can be important (crying baby, anyone?), but it’s the important tasks that are NOT urgent that are easy to push by the wayside.  For me, that is healthy eating, spending quality time with those I love, and nurturing relationships with other Scoliosis families.

We are all guilty of it – we let our health slide, our friendships fade, our spiritual development fall to the wayside, in the pursuit of a few moments apart from the never-ending “to do” list.  But, as I was driving today from one activity to the next, I realized that ignoring those important things will eventually come back around to haunt us.  Our energy fades as we ignore our health, loneliness sets in when we ignore our relationships, and, when trials hit, we forget how to cope when we let our spiritual development lag.

Our family had been moving at a crazy pace for months, when we decided to head to Ann Arbor, Michigan in late December for 24 hours of family fun.  We were combining a little get-away with the kids’ annual Scoliosis checks.  We figured our years on “hiatus”, that we had become so used to, would continue.  We knew that our son had a tremendous growth spurt this year (3 inches!), but his curves had been so minimal for so long – I just got used to the comfortable place of moving outside the Scoliosis world.  But, alas, our hiatus is over – our son’s curves have increased.  Thankfully only to 25 degrees, but still substantial enough that we need to go back to nighttime bracing.  After over 3 years of no bracing for either child, we are headed on a trip back out to see Luke at the National Scoliosis Center to get a shiny new brace.  BAM, our crazy frenetic pace has been interrupted, as we are brought back into the Scoliosis world full-force.  Mind you, I never really leave it – I am in it, day in and day out, as I help OTHER families through their struggles.  But, now, just as I became complacent when it came to our own family, we are back into it with a vengeance.  And, it reminded me that I have to focus on the important things, as I tackle the urgent. I need to continue to reach out to you, my virtual Scoliosis family, as our immediate family journey continues.  I pledge to write to you more, and I hope you write to me more.  Feel free to reach out through this blog or through my EmBraced In Comfort facebook page. Let’s continue to support each other, as we resolve to live our crazy, frantic everyday lives, while dealing with the important task of treating and improving our Scoliosis.

Will God Choose to Heal My Scoliosis?

Hi everyone.  This is Tina blogging today.  Today I want to talk about an issue that many of us contemplate – will God choose to heal my Scoliosis (or other ailment)?  Or, more truthfully – why hasn’t He healed my (or my child’s) Scoliosis?  This is a question that is universal to any ailment you or a loved one may suffer from – it’s the spiritual struggle that many of us have when dealing with a malady.

Sitting in church the other day, I was listening to the Gospel lesson from Luke 13 (10-13).  The passage is as follows:

10 On a Sabbath Jesus was teaching in one of the synagogues, 11 and a woman was there who had been crippled by a spirit for eighteen years.She was bent over and could not straighten up at all. 12 When Jesus saw her, he called her forward and said to her, “Woman, you are set free from your infirmity.” 13 Then he put his hands on her, and immediately she straightened up and praised God.

I heard this lesson many times before in church, but this time was different – what struck me this time was that the woman “was bent over and could not straighten up” – was it possible that the woman in this story had some form of Scoliosis?  And, then I got to thinking…Jesus healed that woman without faltering.  No hesitation, whatsoever.  Therefore, He clearly thought that the suffering from Scoliosis was dire and in need of his miracles.  The second was that he healed her very quickly – she didn’t even have to ask!  So, why is it so hard for the rest of us to get such a miracle, when we are praying daily for it?  Many of us have legions of people praying for our ailing family member, but some of us don’t get the full-out healing miracle we are really asking for.

So, that begs the question – is it possible that God sends healing in many different forms?  Is it possible that he puts all sorts of “puzzle pieces” together for us, so that we can get the help we need from many sources, in ways that equal up to the healing that he intends for us?  And, then I got to thinking about how strongly He put the ideas and the know-how into my heart to start EmBraced In Comfort.  I can look back on my life, at all the skills and seemingly unrelated bits of information that He brought into my life, and see how it all came together to slowly, but surely, chip away at the discomfort experienced by brace-wearing patients and to help them experience the healing they need without the discomfort from a brace.  There is no way that little old me would have come up with an idea that would have grown to what it is without God’s intervention.  And, that is pretty awe-inspiring – in other words, we can all contribute to the healing of each other in some small way.  What is He putting in your heart today?  How can you help others?

Let’s look at some other of His instruments in the Scoliosis World – Dr. Morningstar (and his fellow Scolismart Docs), who have come up with unique and ingenious new therapies for Scoliosis, helping many people and turning traditional treatment plans upside down.  And, for us, one of our “angels” was Luke Stikeleather, at National Scoliosis Center.  Luke (how fitting that his name matches this book of the Gospel) was able to make a brace that worked wonderfully for both of my children, but, for my son, it was a contributing factor (along with other therapies, like pre- Scolismart work with Dr. Morningstar) to bringing his Scoliosis down to where it WAS, in all respects, “Healed” (brought down to 10 degrees).  It still exists, but not much more than 15 degrees.  Yes, he’ll always battle it, but we have a fighting chance now. We have hope. My daughter was not healed, but surgery was prolonged for years through work with both Dr. Morningstar and Luke and, when we felt the need to move to fusion surgery, after years of fighting, she was blessed through a great surgeon (Dr.Li at the University of Michigan) and she is very happy now, post surgery.  Her Scoliosis was not cured, and she will always be plagued by side effects, but she feels healed, she feels stronger, and she feels proud of herself, and those are the important things.

So, my dear friends, your Scoliosis patient is very much worthy of healing and help.  And, God has put many people out there, including you, to be advocates, healers, and comforters to you and your family.  So, don’t lose heart.  He may not put His hand on us all and whisk away the pain, but healing may come in doses, through many avenues, and through people that He places on your path.  Scoliosis IS important to God, and so is your Scoliosis patient.


Time to Celebrate

Hey everyone! I’m sorry it’s been such a long time since I’ve written. Things on my end have been pretty hectic with vacations and sports. The big vacation is what I’m most excited about.

Two weeks ago, my whole family got on a plane headed for Orlando, Florida. This, if you don’t already know, is the home of the famous Walt Disney World.We got to spend five days down there as a sort of birthday trip for my mom. She even made an awesome shirt especially for the trip! I am so glad my family got to go, and it reminds me of how different some thing were when we went a few years ago.
Okay, before I take a trip down the very foggy Memory Lane, there are a few things you need to know. First, Orlando is hot. The whole state of Florida is just a humid, sweltering tourist trap. Second, while you’re at Disney, you spend a lot of time waiting in lines. Thank goodness most of the waiting is indoors. Third, you do a lot of walking. You might think, “Hey, It’s going to be super hot, so I’m going to wear flip-flops.” Our feet hurt enough while wearing tennis shoes, I can’t imagine what it would’ve been like wearing sandals. Don’t get me wrong, even though all of that sounds pretty unpleasant, we all still had a great time.
The last time my family and I went to Disney World, I still wore a brace. Since I was only supposed to have my brace off for two hours per day, I probably wore it around the parks. (I used the word ‘foggy’ to describe my memories of this for a reason) I think it’s safe to say that no matter what brace you have, you are probably going to get pretty hot when under the sweltering sun for many hours. I know I did. I was wearing a Rigo Cheneau, which is plastic. When plastic is in the heat for a while, it too starts to get hotter. Don’t worry, it didn’t burn me or anything, but it was still pretty warm. Also, if I was on my feet for a while, my back or shoulders would sometimes start to ache a little bit. So, with all of the standing and walking that happened at Disney, I probably got a little uncomfortable at times.
All I can say is that I’m glad that I got to enjoy Disney without having to worry about my brace. We all rode lots of rides (except for my dad), saw some shows, and had a lot of great family bonding time.
As always, remember to comment and send in questions. I love hearing from all of you, it makes my day! See you next week! (Hopefully)
My family and I at Disney's Animal Kingdom
My family and I at Disney’s Animal Kingdom

My adventures with Physical Therapy and Scoliosis

Hey everyone, I’m sorry that this article is a few days late. I don’t quite have a set schedule for publishing posts, but I’ll try to be more consistent from now on. For today, I’m going to answer Fritz’s questions.

For starters, I didn’t just have physical therapy after surgery, I actually had it before, too. I tried a few different types while I was bracing. The first one began shortly after I got my Spinecor brace, and the therapy was based on the brace.  We traveled two hours to University of Michigan hospital to work with a qualified Physical Therapist. This was about 8 or so years ago, so I can’t remember any of it. Personally, I was not a big fan of the Spinecor brace, but I’m not sure if that feeling was the same with the therapy.
After I switched to the Rigo Cheneau brace, I traveled to Wisconsin for a week long session of Schroth therapy at the Scoliosis Rehab. The therapists were worried that I was too young, and that the therapy would be too difficult. When I talked to my mom about this, she says that some of the techniques were pretty difficult for me. The one thing I remember is the reward system. I can’t remember if it was daily or after I completed an exercise, but it’s the thing that stands out the most. The reward was a fake tattoo. I remember being so excited to get one of those things, and I think that definitely helped motivate me. It turns out that those exercises were too hard for me, because I stopped doing them shortly after I got home.
Next came the ScoliSmart therapy. This is one that I kept doing until just before my surgery. There were things that I liked and didn’t like about this therapy, but overall it was pretty effective. It helped to slow the grow of my curve for as long as possible. One thing hat I didn’t like about this therapy was the adjustments. Every time we visited the office, the doctor would do some adjustments on our (my mom, brother, and I) backs. I’m not quite sure why I didn’t like these, and I don’t know how they work either. I just remember them being uncomfortable. This is my personal opinion, though. My mom loved the adjustments.
A few months before my surgery, I had two therapy sessions at University of Michigan, where I was given back strengthening exercises. At this point I was out of my brace, so the doctors were trying to strengthen my back and shoulder muscles before the big day. These were mostly stretching and involved a lot of exercises with bands. These didn’t bother me, and they probably helped me get over the discomfort I was feeling because of my newfound lack of support after being braced for so many years.
The only therapy that I’ve done after my surgery was during my four days in the hospital. For the therapy, I had to practice walking around the hospital and climbing stairs. I had a strong dislike for these. It was probably just because I was under the influence of a few different drugs, I just wanted to sleep, and walking made me nauseous. I don’t remember very much during my time at the hospital because I was taking a lot of medicine. To leave the hospital, I had to walk a certain distance and climb a few stairs. I completed these, but not without lots of complaining.
I think that a reward system might be good for certain kids doing physical therapy. This motivates, and helps them push past whatever discomfort they might be feeling. This was the case for me, at least. I hope I answered your question. Remember, if any of you have questions, make sure to leave a comment!
See you next week!

Sports with Scoliosis

Hey everyone!

Today, I am going to do my best to answer Jackie Umstead’s question.

One of the first questions I had for my doctor when I found out I was going to need surgery was this: Will I still be able to do sports? Her answer was yes. I play basketball, volleyball, and I lift weights. A lot of these can be extremely beneficial to those with scoliosis. For instance, if you do it correctly, lifting weights can help strengthen your back muscles. Since I wore a brace for so long, my back and shoulder muscles were weak because I didn’t use them much. Now that I’ve started weight lifting again, I can definitely feel a difference. My dad, who also has scoliosis (he never got treatment), says that weight lifting helps a lot with back pain. Another helpful thing to do is stretch. I know that my hamstrings are always tight, and this can sometimes cause tightness in my back. Even though I don’t stretch very often, I should. My doctor recommended daily stretching for me, and I’ve seen other websites that support this as well. Don’t push yourself too hard, though. If you do too much too soon, you could pull a muscle. It’s not fun having a pulled muscle; I speak from experience.

If you are pre-surgery, a lot of doctors recommend swimming because it helps strengthen the spinal muscles in a weightless environment. If you are post-surgery, the first thing you should do is consult your doctor. After searching around a bit, I found that most competitive swimmers go back to swimming after either six months or a year. Their ability to do certain strokes or flips depends on the person and the level of curvature they had. It is also dependent on which part of the spine was curved. Some people can’t do flip turns or the butterfly stroke, others can.

Some sports you have to be careful with, though. Some people don’t recommend long distance running, because it can be very jarring. Sports like gymnastics, tennis, and anything that is one-sided or causes you to twist a lot can be harmful. A lot of these sports are dependent on your type of curve. I can’t do gymnastics because I physically can’t twist around, and I had to stop a few years after I got diagnosed. All of the twisting and bending was worsening my curve.

Always ask your doctor about sports before trying them. I am not an expert, but I dug up as much as I could. If  see anything else on growing rods and swimming, I will be sure to post an update.

Good luck, and see you next week!

P.S.- Here are some websites and blogs that I found.