Never underestimate the Power of a Mom

My daughter convinced my husband and I to watch the popular TV series “Stranger Things”.  I won’t include any spoilers here, but in one scene, Winona Ryder, who plays a very determined Mom of a very unfortunate young man, hugs him and says, “I won’t let anything happen to you.  I promise!”.  As she said that, I leaned over to my husband and said wryly, “yeah, she shouldn’t make promises that she can’t keep”.  We both chuckled because we knew it would probably get worse for that family, but it kind of hit me deep.  I thought, “Well, when she made that promise, she probably really believed it.  She probably was ready to fight a battalion for her son, and had no plans to fail”.  Then I thought about how many moms have felt this extreme warrior protective nature at one or more times in their Mothering.  For me, it was when we got the diagnosis of Scoliosis.  I literally went into battle mode.  I researched, I prayed, I thought about things from every angle.  And, then when we went forward with what I thought was the best plan, I was ready to conquer every single obstacle.  When she came home in a shiny Spinecor brace, and I had 3 days to figure out how she could be independent at school while wearing the brace, I didn’t hesitate.  I pulled out my sewing machine, I cut, I sewed, and I put something together that would work for her.  It wasn’t pretty, but it did work.  I never doubted that I would be able to make it work – and I was right.  I’m sure each Mom reading this has their own story of their superpower moments in the lives of our children.  Sometimes we can conquer, but we are humans, and, unfortunately, sometimes we cannot.

When my daughter’s orthotist urged me to make my bodysuit invention available to the public, I hesitated.  He thought it could really help a  lot of people.  It was something I created in a warrior Mom moment and I wasn’t sure if it could really do any good.  But, he urged me and I decided to proceed.  In the early days of my patenting process, I shared the design with a brace manufacturer (that I will not name), figuring they would think it’s a great supplement to their brace.  But, to my disappointment, the head of the company wrote me that “I was just a Mom of one patient”.  The tone of the email (which I have kept for motivation) was that I was just a Mom, and I didn’t understand all the aspects of the situation.  But, I thought to myself – who BETTER than a Mom to soldier through a problem that involves her own child?  Who has a better motivation?  Who has a better understanding?  Nothing can overpower the raw determination of a Mom in fight mode for her children.  Dads can hold their own, too.  But, I still feel they fall short to Moms.  Sorry, guys.

So, if you are new in this journey – believe in your power.  If you are a veteran, share your stories below in the comments.  We are all on the same team – we are all warriors for our children.  And, we should have each other’s backs in battle.  I have your back, be assured.

super mom

 

Changes and Perspective

This has been a very hectic month!  The seasons are changing, the people in my life and work are changing, and we are making a huge product changeover at EmBraced In Comfort! Whew!  Maintaining balance is tough.  In addition, I’m still trying to map a course for my son’s next brace – figuring out possible travel, expenses, timing with his crazy growth spurts, etc.  It can get overwhelming and difficult to find balance.  But, I try to remember that this is a marathon, not a sprint.  I try to remember that my family is the reason for it all.  I know how important your families are to you, too.  I wish you a very happy holiday season!  May you be blessed in abundance. See you in 2018!

Weathering Growth Spurts: In Scoliosis and in business.

As Scoli parents, the one thing we all dread is the GROWTH SPURT.  It can come at any time and catch us unawares.  Growth spurts are typically the time when Scoliosis goes a bit wild and curves can increase greatly during these times of rapid change.  This last year, my son had the ultimate growth spurt – about 5 inches in one year.  Last year, when we took him for his Orthopedic checkup, he was celebrating about 4 years out of brace.  The first time my son braced, Luke from National Scoliosis Center made him a brace that we credit with a DECREASE in my son’s curve by over 10 degrees.  And, my son was able to live blissfully at this smaller curvature until…well…adolescence.  So, when we had his checkup and realized his curve had increased, we knew we were heading right back to National Scoliosis Center.  (You can see more about our visit HERE.)  Well, we went back to the Doctor in September (yes, it’s taken me way too long to write an update), and were very happy to find out that, after a year of wearing his brace only at night, we were still at the same curve! (possibly less, but there is always that standard deviation)  Whew!  To weather a 5 inch growth spurt and only have to brace at night is a big win!  He’s holding on around 22-26 degrees.  We figure if we can hold him there, we will be very happy parents indeed.  And, if he can keep just bracing at night, he will be much happier.  We fully expect this year to be a very large period of growth as well, so we want to stay fully armed with the best brace we can.

This year has been a period of rapid growth in my EmBraced In Comfort business life as well.  This is most likely why I have been neglecting my blog (sorry).  My business has grown a ton, we are working on lots of new exciting changes, and it’s been a full-time endeavor to weather those growing pains.  In business, as in Scoliosis, rapid growth is often a sign that something might go uncontrollably haywire.  But, we are weathering it and bracing for another year of growth next year.  We are so happy when we go read the reviews of all of our brace-wearing customers to find that we are, indeed, making a difference for you all – our Scoliosis family.  That is what keeps us doing what we do, day in and day out.

Yesterday’s hard is today’s easy

Yesterday was really hard for me.  I had a migraine, which, for me, involves strobe/blackout vision.  Then it kind of just turns into mind-fogginess and headache for a couple days.  And, I was scurrying to get new samples ready for a photo shoot and my machine would not work correctly.  The samples were not happening.  I was SO FRUSTRATED.  My colleague looked at me and said “It looks like your work day is over”.  I had to cancel the photo shoot, admit defeat, and leave in a haze of uncertainty.  I didn’t know if I could fix this problem with the machine (and I’m still not sure how I’ll do it).   But, then I thought back to my past struggles.  Struggles that were just as hard and overwhelming several years ago as this one is now.  But, most of the biggest struggles I can think of (especially in my businesses) are now things that seem easy to me.  When I was working through them, I was frantic, lost, in complete disbelief that I could solve them…even ready to QUIT!  But, now I think most of those challenges are simple.  They are simply replaced by new and greater challenges.  So, I decided to think of this machine like I would probably view it in several years.  I will figure something out (still not sure what yet), and someday I will look back and remember that THIS time I didn’t despair.  This time I remembered what I had been capable of in the past.  And, I simply chose to push through it.

Dealing with a diagnosis of a loved one can be the same way.  I remember how I was in the early days of my children’s Scoliosis diagnosis.  I was frantic, lost, confused, not sure how we would proceed.  And, now, looking back, I can see all that I’ve learned and I feel confident that, no matter what the next appointment brings, we will have a solution.  Just remember, if you are new to this – it gets easier.  It gets better.  It may not ever be EASY, but life will one day return to a comfortable rhythm.  You WILL discover your plan through this and you WILL work through it – have confidence in yourself and, when all else fails, think like your future self – “c’mon, we got this…one foot in front of the other”.

 

 

Braced, a Scoliosis Book Review

braced cover

Thank-you Alyson Gerber for creating a book for our curvy kids – finally.  Thank-you for creating a book that isn’t just facts and figures, but a story about a young Scoliosis patient who is going through the same thing that many of our kids are going through today.  I was asked to evaluate this book by a local librarian and it was actually the first fiction book that I took the time to read in…I’m embarrassed to say…probably a year.  And, I love to read.  I just have too many other things going on.  This was well worth the time, though. (and spurred me on to read more)  I was hoping that this would be a well-written piece and it did not disappoint.  (And, I am a very picky editor!) It is definitely written for the young teens and tweens, but I actually enjoyed it quite a bit, too, because it gave me the perspective of a teen mind that many of us Moms don’t get to catch a glimpse of very often.  The story was interesting – making it a good book to recommend to any child, not just one going through Scoliosis.  It would also be great to recommend to friends of Scoliosis kids, who might be having a hard time understanding how to be supportive of their friends.

Braced, is about a young girl named Rachel, who loves soccer and loves her besties.  It takes the reader through her journey of bracing – through all the ups and downs, emotions, and regular teenage life. I asked my daughter, who is 15, to read, it, too.  Although at 287 pages it is a good-sized book, my daughter was done in an hour and a half.  I think that is a tribute to what a well-flowing book it really is.  I asked her if she shared any emotions with the main character and her response was surprising – she said she really didn’t remember the time she was bracing. She braced for 6 years!  But, since it was from the age of 6-12, she doesn’t remember a lot of those emotions.  And, we did not have either of our kids in a Boston brace.  As I’ve mentioned in other articles, although it is the standard out there, I do not think it is very effective, compared to other treatments.  But, that is ok, because the trials and tribulations that Rachel goes through in the story are relatable to any young person going through trials –and it’s useful for their parents, too.  My daughter enjoyed the story for what it was.

I highly recommend you get your Scoli friend or family member a copy of this book.  Pair it with a Higgy Bear and you’ll have a great gift set! (Ok, maybe a Brace T-shirt from EmBraced In Comfort, just to round it out) 🙂 Happy reading, everyone!

Perfectly Imperfect

We’ve all heard the phrase “Progress, not perfection”.  Perfectionism is something I spend a lot of time thinking about because I struggle with it every day.  It seems that no matter how much I do or how far I’ve come, I always feel that I fall short due to my constant plague of perfectionism.  Striving to be great is a good thing, but, perfectionism can really hold us back in some instances, especially when it comes to dealing with an illness or a malady, like Scoliosis.

When my daughter was first diagnosed, I was overcome with anxiety – and experienced a lot of sadness for my child, whose body would never be perfect.  I knew after that diagnosis that her life would change forever.   I also felt overwhelmed by the many different treatments out there.  I wanted to choose the perfect one – but, as we all know, there are no perfect solutions.  And, there are no guaranteed outcomes.  So, I struggled.

But, over the years, I’ve grown to expect less and less perfection from my life.  I think that God honed me through trial until I realized that perfection is an impossibility.  And, it can also be a hindrance.  How many times do people feel paralyzed due to the overwhelming need to “figure it all out” before they start an endeavor?  How many are afraid to start something because they feel they need to make things perfect or they might fail?  If I had waited to start my business until everything was perfectly aligned, I’d still be waiting to start – because nothing is EVER perfectly aligned!  People can hold themselves back from doing SOMETHING because they don’t want to risk falling short of getting EVERYTHING.  But, life isn’t that way.  It doesn’t exist in absolutes.

Now, when an overwhelmed parent contacts me with a new Scoliosis diagnosis, I try to point out that this disease is a marathon.  It’s a journey without an end.  It will be the new normal of LIFE.  So, don’t worry if you can’t brace a perfect 22 hours a day from the start.  And, don’t worry if you miss 1 out of 5 exercise-therapy sessions.  Even 10 hours per day in a brace is progress toward that 22.  And, 1 out of 5 exercise sessions is better than zero.  My son gets stressed out when he is going to an overnight sleepover because he doesn’t want to bring his brace.  And, you know what?  I tell him to leave it home.  It’s ok to take a night off.  It’s ok to take a deep breath.  Because our kids have to be in this for the long haul – they have to feel like every bit helps, but that one can still be successful when they get things maybe 90% right.  Because the only guarantee in life is that we will fall short of perfection 100% of the time.   And the only way they will believe this is if we believe this.

So, now when I look at my daughter from an angle that shows her a-symmetry, I sit and marvel at how what I viewed as an imperfection is really a very beautiful thing.  My daughter taught me that she was proud of her surgery scar.  She is proud of how strong she is.   And, when my son comes at me with his frequent “hug attacks”, and I can’t fully embrace him because he is encased in his brace, I marvel at his tenderhearted strength through it all.  And, now it’s impossible to see them as anything but perfectly imperfect.  They are perfectly imperfect, our family is perfectly imperfect, and the reality is that I wouldn’t have it any other way.

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How a Scoliosis Brace is Made

This week, I want to show you, step-by-step, how a brace is made, using our recent experience at the National Scoliosis Center (NSC).  Not all braces are made this way, but, in my opinion, the best ones are! 🙂  And, it makes the experience much more fun for the children when they can take part in making their own brace!

First, detailed measurements are taken of the patient, including a full digital scan of the torso.

measurements
Measuring, measuring…by the way, that is NOT an EmBraced In Comfort tee – But, my picky patient changed into one, though, as soon as he could 🙂
checking-angles
Measuring rotational angle
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Scanning the body with a scanning “gun”
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It’s fun to see your body appear on-screen!

Next, the patient picks out a pattern from many exciting choices…

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Picking out a pattern. Fun!

Then, the plastic is inserted into the oven and the tissue with the pattern is adhered…

the-oven
The plastic is hot and ready to come out of the oven
hot-plastic
Preparing to place the tissue on the hot plastic
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Pressing the pattern onto the hot plastic
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Peeling the color application sheet from the hot plastic

Then, Luke and his associate, Michael, use a foam replica of the patient’s body (which was carved on a digital machine, using the digital scan they obtained earlier), and they lay the hot plastic on it. They work quickly to trim away the areas they will not need.

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A foam replica of the torso is created
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Laying the plastic on the mold
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Luke is always willing to do what it takes to make a great brace – even laying on the floor to complete a task!
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It takes two to trim the scrap off while the plastic is still hot. They work so well together!

Then, there’s this…

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Playing with some hot plastic scraps

Back to business now…Once the plastic cools, Luke tries it on the patient and makes marks where he intends to trim…

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Trying the brace on for first fitting
marking
Honing the details

Then, he uses a special trimming machine to cut the plastic off at his markings…

trimming
Trimming edges along the cut lines

Next come the rivets for the straps…

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Riveting
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Inserting rivets
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Pressing the rivets into place

Then, Luke spends a lot of time smoothing the edges (not pictured)

And, more fittings and more fine-tuning…

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Using a heat gun to work on uncomfortable parts
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Using a handheld torch to soften some “pokey” parts

Finally, they get an in-brace X-ray in the very high-tech and rare EOS machine, which gives wonderful, 3-D images with extremely low radiation levels.  Very few facilities in the USA have an EOS machine, but National Scoliosis Center makes a point to have the healthiest and best technology for the patient…

eos
EOS x-ray machine! State of the art – nothing but the best at NSC!
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The Left side is the in-brace EOS image, the right side is the pre-brace, regular x-ray image

In our case, even though we got great correction in-brace, Luke wanted to further hone under the right shoulder to help relax the right shoulder and bring it down to a more symmetrical level.

After the brace was finished, we went home to spend the night in it and then returned to the National Scoliosis Center in the morning to make sure that it was fitting just right!  Luke and his team can get your patient into a custom-fit brace in just under 2 days!!  Wow!

Although we stay with family when we visit the NSC, they do have excellent group rates at a nearby hotel AND are just blocks from a Metro station.  My son got measured for his brace first thing in the morning, then he and I hopped a train into DC, spent a few hours wandering around the city, then headed back and helped Luke create the brace – all in one day!  You can combine a trip to the NSC with some wonderful opportunities to explore our Nation’s Capital.

I tell parents over and over – you will not be disappointed with your results from NSC.  I will be sure to keep you all updated on my son’s results as we progress into the 6 month mark.

 

 

Bracing at the National Scoliosis Center

This week starts a two-part blog series on my recent trip with my son to visit the National Scoliosis Center in Fairfax, VA.  I’ve written several articles on the work of the talented Orthotist Luke Stikeleather, which you can read HERE, HERE, HERE, and HERE.  However, this was our first visit in a few years, and our first ever visit to his new clinic.

vaughn-and-luke-2
Vaughn and Luke at the National Scoliosis Center

 

Luke creates a type of brace called the Rigo-Cheneau TLSO.  Between my son and daughter, we’ve probably had him make 7-8 different braces, and we’ve never once been disappointed.  I have always described him as a blend of Orthotist and artist, fitting each patient meticulously.  The other benefit is that he makes the braces in-house (and sometimes lets the kids help!), so his turnaround time is between 2-3 days.  This makes it simple for families (like us), who are coming from out of town.  I will have more on the actual process of making a brace in next week’s article.

The first time my son went into one of Luke’s braces (several years ago), he was at a 25 degree curve.  Luke recommended that he brace full time for a year, and, after that year, my son’s curve was decreased to 11 degrees. We then had him make another brace, which my son wore only at night for another year.  After that, his curves stayed put for over three years, until he had his growth spurt this year. Now he is back to 25 degrees and ready for another year of nighttime bracing.  We are very hopeful that he will have the same results this time as he did last time.

When we started planning our trip to Virginia, my son was not very happy about it.  But, we were both looking forward to seeing Luke again.  This time, I decided that I was too tired and busy to make the long drive by myself, so we cashed in some frequent flier miles and decided to fly to the area.  My Aunt and Uncle live about 20 miles from National Scoliosis Center, so we usually stay with them while we are in town.  We decided to fly out a few days early and do some visiting with family, because I wanted to work in some fun time.  I asked my son what he wanted to do on the trip, as well as where in DC he might want to visit, but he was only interested in Pokemon Hunting (Playing Pokemon Go).  Since it was HIS trip, Pokemon hunting is what we did!  He had his most successful days ever, including finding a nest of Growliths right at the Washington Monument!

vaughn-in-capitol
Vaughn hunting Pokemon by the Washington Monument – we were blown away (literally AND figuratively….brrrr!!)

All in all, we had a great trip, and he is adjusting to his brace nicely.  It usually takes 1-2 weeks for the soreness to subside, so he is still feeling a little achy.  I would compare it to when a child first gets teeth braces.  They are annoying and sore for a few weeks, but then they get used to it.  They really do get used to it quickly!  Emotionally, it is different for my son to process the change, since he was 9 the last time he wore a brace and now he is nearly 13.  Everything is harder when you are 13.  But, he’s working through it and doing a wonderful job.  He grumbles when he has to put it on, but he has been very responsible about his 12 hours in the brace every day.  And, I told him that he better not complain around his sister, since she had to wear a brace full time for many more years than he has had to.  It’s all about perspective.  Yes, we are disappointed that he had to go back into a brace, but very grateful that, through wonderful bracing and diligence on my son’s part, that his curve is still very low and manageable.  And, we are so very grateful that someone like Luke Stikeleather is part of our medical team, a man full of compassion, kindness, and who is on a true mission to help Scoliosis patients. You will not be disappointed if you also choose to add the National Scoliosis Center to your medical team.

before-and-after-2
Preliminary results – pre-brace on the right and in-brace on the left – excellent correction.  Note: more brace tweaking was done AFTER this x-ray to help bring the right shoulder down and create even more correction.

Uncluttered Desk, Uncluttered life

clean-desk

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?

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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.

crippled-woman-healed

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)
-Cindy
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!
-Cindy

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.

http://www.treatingscoliosis.com/blog/sports-and-exercise-if-you-have-scoliosis/

http://sport.onehowto.com/article/what-sports-are-good-for-scoliosis-5740.html

http://www.scoliosis.org/forum/showthread.php?7651-Swimming-Competitively&s=dc3d0783329eb9708169dc6ca1f624da

https://scoliosis3dc.com/scoliosis-and-sports/

Click to access BCCH1689_TheGrowingSpine_2015.pdf

Life After Surgery

Hey guys! I just wanted to thank everyone for all of the positive feedback, and for all of your questions. Today, I’m going to be replying to Steve Wainess.

When I first got out of surgery, I was in the hospital for four days. I was asleep for most of that time, and only got up if someone made me. I also didn’t eat very much, and lost around ten pounds during those four days. I had to stay a day or two longer than another spinal fusion patient nearby, because my curve was more advanced than hers. There are many different factors that could influence how long you are in the hospital, so don’t worry if you are in the hospital for a different amount of time. While I was in the hospital, I had to practice walking a lot, which I hated. First, I was walking with assistance. A day or two before I left the hospital, I could walk on my own, but I still had someone next to me.

After I got out of the hospital, I was usually in bed or sitting somewhere comfortable; I only moved when necessary. This went on for about two weeks. My ability to move slowly increased, but I got tired really easily.

My restrictions were slowly removed each time I went to the doctor’s office. Four months after my surgery (I think), I was cleared to run. My mom tells me that I was so elated that I sprinted out of the doctor’s office as soon as I got the ‘ok’. At the six month mark, in June, I had all of my restrictions removed. I only had one complication during surgery. While the doctors were operating, the sensors on the left side of my body were not responding. Because of this, the doctors couldn’t get as much correction done as they wanted, and they had to use more hooks. When I got out of surgery, my left thigh was numb, but it has faded over time. It feels completely normal now. (Mom’s input: the Doctors lost signal to her left leg during surgery while performing the first of 3 osteotomies that they wanted to perform.  Because her curve was so severe (97 degrees), Dr.Li wanted to do the osteotomies (shaving of bone) to get the curve straighter.  Because she lost signal to the left side during the first one, she did not finish the others.  Therefore, we only got a correction to 40 degrees.  The loss of signal could have been from a loose connection, but it was good that they played it safe).

Now, there are very few things that I can’t do. I can’t bend backwards very far or twist from side-to-side, but that’s pretty much it. My back and shoulders surrounding my scar are still partially numb, even after a few years later. Don’t worry, this is normal. I also sometimes get little nerve pinches in my shoulder blade area, but that’s nothing to worry about as well. Of course, if you have any concerns, you can ask your doctor when your surgery date gets closer.

One of the questions I got was this: What is the most important thing to know about spinal fusion surgery? I had to think for quite a while on this one, but I hope my response answers your questions.

It is going to be difficult, and most likely uncomfortable too for a while. I’m not going to sugarcoat this. I know, you’ve probably heard that it’s going to be hard, but hearing it and experiencing it aren’t the same thing. You might get nervous, frustrated, or scared. I went through all of these things, too. As I was in the final hour before my surgery, I was terrified. It’s scary not knowing what’s going to happen next, and realizing you have no control over it is worse. Know this: your family and team of doctors will be there for you and protect you. They will make sure you’re alright. I had so much support from my family and friends, it was overwhelming.

My days in the hospital were extremely uncomfortable, but the doctors always made sure that I was never in pain. While I was recovering, it was extremely frustrating to not be able to do everything you could before. Things like showering and even walking are difficult for the first few weeks, and that can be hard to deal with. Just know that it gets better, that you will get better, and that you will be back to normal in no time at all. Also, I don’t regret getting surgery for one second, because everything was worth it in the end. I feel so much better, so much more alive, now that I have fully recovered. It will be difficult, but you will be so much better off when it’s all said and done.

Remember, if you have any questions, simply ask! See you next week!

-Cindy

Summer Blog Takeover

Hey guys! My name is Cindy, and I’m taking over the blog for the summer. (Maybe longer, we’ll see.) I’m 14 years old, and I’m super excited to be on the blogging team, which pretty much consists of my mom and I. If you haven’t guessed already, I’m the daughter of Tina, the creator of this blog.

Many of you have probably read about my scoliosis story on this blog, but I’m going to share the short version with you anyway. When I was six, I was diagnosed with scoliosis. The doctor said that I had approximately a 25 degree curve. The doctors advised us to wait six months, and so we did. Six months later, we return to the doctor and find that my curve had gotten much worse. (I can’t remember many details, that was a long time ago.) My parents decided to start bracing. I started wearing a Spinecor brace soon after, and wore that for about a year. (This is when EmBraced in Comfort was born.) During that time, however, my curve continued to get worse. That brace definitely didn’t work for me, but we searched for other options.

I started wearing the Rigo Cheneau  brace next. Our Orthotist, Luke Stikeleather, whom I referred to as “Luke”, made my new brace. He is probably one of my favorite people on my medical team, and I still miss him today. Every year, my family would travel to Washington, D.C., which is where his office was at the time. He now works at the National Scoliosis Center.

After wearing the Rigo Cheneau for a few years, we started to see that my curve was progressing again. The Rigo had successfully kept my curve in check for a while, but apparently that time was over. We reached a decision with careful deliberation: I was going to need spinal surgery. Specifically, a spinal fusion, which involved lots of screws, hooks, and a titanium rod. At the time, I had just recently turned 12, and I was scared. A few months before the surgery, I no longer had to wear my brace, because they wanted to strengthen my back muscles before the operation. I actually fractured a rib a few months before, because my brace was too small, and didn’t even know it!

December 2013 was the month when the surgery would happen, and it was here. The date was just around the two-week mark.  I was terrified. Before surgery, my curve was just below 100 degrees. After, it was approximately 45 degrees.  Five awful days later, I was out of the hospital and ready to spend most of Christmas break lying down. Six months later, I was finally cleared to do all activities. It has now been two and a half years, and I’m feeling great! I play basketball, volleyball, and I lift weights.  Plus, I don’t have to wear a brace anymore, which is awesome.

Since I’m the new blogger, I wanted to try something different. I want you guys to ask questions. If you have any concerns, questions, or stories of your own, I want to hear about it. If you really like this idea, and there are enough questions, I will choose a few and answer them on the blog. That way, everyone will be able to see; a lot of you might have similar questions. Think of this as a sort of a “Dear Abbie” type of thing. I’ve been through a lot of different things when it comes to Scoliosis, so hopefully I can help all of you with your questions!

See you next week!

Keep on Trucking

Tuesday morning, I woke up to this drive to my Doctor appointment:

IMG_20160209_095809554_HDR.jpg

I recently fell down our back steps (again) and injured my ankle (again).  I needed to get to the Doctor for my checkup (and we all know how easy it is to reschedule with Doctors).

I was terrified during my first few minutes of driving – the visibility was horrible (worse than in the picture) and, in some places, I could hardly make out where the road was.  There were also large drifts of blown snow every once in a while that my little car was not well equipped to handle.  I just kept searching for tire tracks to help guide me to approximately where I needed to steer … looking for some sort of idea of where the road was and where I needed to follow.  And, I was praying – hard.  No music, just praying, “we can do this, Lord”.  Sometimes I could only see a few feet in front  of me, but I knew that after I made it past those few feet, I would be able to tackle the next few feet ahead, once those feet came into view.

This drive really got me thinking – navigating life after a diagnosis of any kind is much like driving in scary, treacherous, unknown conditions.  You barely know where you are supposed to be on the road, you try desperately to find any beacon to follow, and you have to concentrate COMPLETELY on the task of navigating the road ahead.  When you first get a diagnosis for your child, be it Scoliosis or another type of illness, the first few miles of the road are terrifying.  But, once you get your wits about you and get a little used to navigating the road, somehow it seems to get a bit easier.  The weather hasn’t changed, but you get better at navigating the road in the poor conditions that you’ve been placed in.  You can only see one day or one week in the distance, so you get through those days, knowing that you will just have to keep tackling and plowing through the days that follow, no matter what lies on your path.  Every problem must be driven through until you reach your destination.

The other interesting thing is that, after a few miles, you get more confident – you start to pick up tricks and tips to help you along the way (Where were those tire tracks again?).  You might follow a vehicle that is in front of you, or you might have to forge your own tracks, but, either way, after the miles start to pass, something miraculous happens – your fingers start to loosen their death grip on the steering wheel bit by bit.

On my drive home, I was so surprised how much easier it was coming back than going.  I was much more relaxed and confident that I would be able to handle what would come my way.  As you navigate the treacherous path of illness for yourself (or a child), remember a few things:

  1. Take it slow in the beginning.  Get your bearings and assess the situation.  Find the tools you need to get further down the road
  2. Come up with a route that is best for your situation. And, if you get part way there and find that it’s too treacherous to pass, turn around and take an alternate route.
  3. Pray for peace and guidance as you go.
  4. Remember that the road is long, that you can only tackle what you can see right in front of you.  But, eventually, as your confidence rises, you will be more comfortable navigating the rough roads.

 

2 Years Post Surgery

Yesterday we had our checkups with Dr. Li down at University of Michigan Medical Center.  We had not been there in a year!  I can’t even remember a time when we had not been to appointments for Scoliosis for a year (pre-diagnosis, probably).  I was nervous, but not nearly as nervous as I was in those early years.  The great news is that BOTH kids are doing great!  My daughter is feeling wonderful, 2 years post surgery.  She plays 3 sports (Volleyball, Basketball, Track), plays the Clarinet, performs in local theater, and, best of all, lives a relatively pain-free life.  We got a script to get her massage therapy on a more regular basis – after her surgery, her left shoulder is very tight almost all of the time, but the massage therapy I’ve been getting her approximately once per month seems to be keeping any resulting tension headaches at bay.

My son, thankfully, weathered a 2.5 inch growth over the past year and is at the same curvature as he’s been holding at for 2 years – approximately 10 upper and 13 lower.  We are so happy!  He has EXTREMELY tight hamstrings, which the Doctor says we should really work on, since most of the adolescent patients she sees that complain of back pain have tight hamstrings (and find relief when they start a stretching regimen).  So, if all we have to add to the schedule is family yoga time, we are truly blessed.  The next couple of years will be major growth years for him, but Dr. Li said to keep an eye on him and that we can wait a year to bring him back, unless we notice any changes (hips looking uneven, a greater bump when doing the bending over test).

We celebrated with a trip afterwards to IHOP and taking them back to school (boo, poor babies) 🙂  We are so grateful to Dr. Li and the staff at the University of Michigan Medical center.   We never wanted surgery – we went to great lengths to avoid it, but it was so nice to have them on our side when we had to do it anyway.

We wish you a wonderful Holiday season and hope that you can find peace, no matter where you are along the path of your Scoliosis Journey.  I look forward to starting the new year with some fresh new Scoliosis information for you.

 

My daughter's x-ray, which was "full of personality", according to our nurse.
My daughter’s x-ray, which was “full of personality”, according to our nurse.

 

Cooking up pain relief for Scoliosis

Recently, I was reading a study from the Journal of Pain & Relief, titled Controlled-Release Curcumin for the Treatment of Pain Related to Adult Degenerative Scoliosis: A Retrospective, Open-Label, Case-Controlled Series. This article talked about a very small case study done in a Scoliosis rehabiliation clinic, where 4 adult patients went through 6 months of exercise-based therapy for Scoliosis. Two of the patients took a Circumin (derived from the spice Turmeric) supplement daily. Those two patients rated their pain to be more improved over the 6 months than the other two patients. All four patients got improvement in their Cobb Angles. Although small and, as even the author’s will attest, not the final word on the effectiveness of Curcumin, this can give hope to adults with Scoliosis pain. I had never heard of using this natural supplement to help with nerve pain and inflammation, but upon further research, I found that it HAS been used with success in many patients. The arthritis foundation goes over some more beneficial properties of Curcumin HERE, including some larger grade studies on the improvement of inflammation in patients. So, my point is – it might be worth a try. Despite my catchy title, though, you probably will not get enough benefit by adding Turmeric to your foods, although it can give you a small health boost, while making your foods very tasty. Supplements are recommended, and as ALWAYS – check with your doctor. Just because something is herbal doesn’t mean it’s safe with all medications or conditions. Your Doctor may give you a pitying look of disbelief and say “you can try if you want to”, but as long as it’s not dangerous, that is the main point of the conversation. Many of the sites I read did say that it can have some side effects -s o, read the resources I included and chat with your Doctor. But, if you get the all-clear, it might be worth a shot. In my non-medical opinion, I always look for more close-to-nature solutions before taking chemicals to control my issues. Hopefully this can help you do the same.