The Princess and the Pain....

This Post is for all those who suffer from diseases and disorders who feel invisible. Whether the disease itself is visible or not, the person may feel invisible and this is very difficult and isolating. If you are a sufferer or know and love some one who is you may be interested in this post.

The Princess and the Pain....

We have a lovely daughter who has been chosen to be the subject of the "Survivor Spotlight" and featured in the INvisible Project of the U.S. Pain Foundation.  This is a campaign creating chronic pain awareness through photography and story. Their mission is to empower, recognize and inform society on the challenges/misperceptions of pain ... while empowering those survivors who refuse to give up, who keep moving forward despite the obstacles.  Mary's story is compelling.

I want to be a nauseating Mommy braggart about Mary being chosen, but I also want to shed some light on a subject that is difficult.  The name is so appropriate.....  the INvisible Project.  Mary recently wrote about being chronically ill with several progressive and incurable disorders/diseases and she named the most difficult part as being INVISIBLE.  However, she also feels it is her call from God to suffer well, not inconvenience others, to serve instead of being served and to get herself and anyone around her to heaven.  She smiles, laughs, sings, serves....and suffers.

Invisible.  It is a more difficult word than you might imagine for those with chronic illness that cannot be seen from the outside.  At our house , learning to live with chronic illness is part of the growing up process since all of our children are affected.  Some more than others.  Ed and I make it a priority and goal that these kids learn to suffer well, do not become self centered or live in chronic self pity, but recognize the many blessings they have.  None of this is to negate the difficulty of chronic illness and pain, it stinks, but we choose instead to focus on what is positive and good since we cannot change the facts.

   Our family, like many other folks with pain sits precariously on a razor's edge.  We do not want to project our "stuff" on to others, we do not want pity, we want to be independent, we do not want to stand out, yet the very things we do to cope, make us rather invisible and this is painful. This is even more profound for our boys who, by the nature of being male, never talk to others about their illnesses. If we rarely talk about the medical mumbo-jumbo then we can get away with looking relatively normal for a period of time. This, however, can cause us to feel invalidated as if the real person doesn't exist, is invisible .

    Healthy people go about a regular routine without having to think. For those with pain issues it takes so much more effort, energy, planning and then paying the piper when they are done. Everything has to be thought about. That in itself is exhausting.  There is a wonderful, thought provoking  explanation  called "The Spoon Theory" written by a gal with Lupus, Christine Miserandino.  Please take the time to read it at  her websitehttp://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ .  It will help anyone who wants to understand others with chronic illness.  

I guess I am writing this because after all these years, all the La-La-La-ing (what we call making everything lovely for everyone else), all the surgeries, bald heads, treatments, studies, needles, traveling, symptoms, medicines (more than 110 doses per day in our home) we still do not have the answers.  Do we fake it or do we share?  In what ratio?  There are folks who cannot handle hearing about medical at all and others who want all the gory details.  This makes it a challenge to La-La-La.   It is a constant balancing act.  I think it is important to make others feel comfortable and informed if they are asking. I know this is a controversial stance but I have never seen a benefit to shoving our diseases and the limitations they place on us in anyone's face. That sort of militant stance of "deal with it" is, I deeply feel, unproductive.

      Another factor for those with chronic illness, is coping with others' loss of interest in something that may take your life or that of one of your children. That makes your days very unlike theirs. When an illness is first found it is a huge deal for everyone and is most likely met with love, compassion, help, calls, cards, inquiries of health. Unfortunately when the illness is chronic, progressive, does not get "better", the newness fades away.  This is particularly difficult because you become....drum roll please....invisible.  Though this fact is acutely painful, there is no blame or fault in play here. It's just the way it IS.  Friends and family cannot maintain the level of care that was shown at the beginning of the medical journey over years and years. It's just not possible even if they care deeply.  Even as things progress and get more difficult, most folks involved become immune to the real life drama unfolding behind the scenes at home.  A new diagnosis becomes just "another" diagnosis.

Thankfully there is a wonderful, huge, world-wide, understanding community of those who suffer. The advent of the internet has been a huge blessing in this realm. To be able to connect with others who share the same diagnosis' is invaluable.  It is a place where no one is invisible if they choose to communicate.  

  We liken it to living in different worlds. The one where people think you're fine and "isn't it wonderful how well you handle things"...then the other community of medical folks who "get it".  They know when you're La-La-La-ing and can see right through it.  I have several close friends who share our diagnosis who I either have never met or have seen only a few times at Ronald McDonald House. They are such a huge blessing to me and I can call them when I just cannot maintain La-La-La "normal".  I suppose we just keep our feet firmly planted in both worlds....a bit of a split personality never hurt anyone right?

The challenge then, is being diligent about not becoming resentful, and sharing just enough to re-appear from the invisibilty that weighs down upon those with chronic illness.

I find the closing of this post difficult. I do not want this to have been a negative post because we put great effort into being positive and we truly are a thankful bunch. Yet, I feel the weight of trying to describe something so....well....invisible.  I feel I have not, can not really describe this invisibilityand it's inevitable difficulty. I will let the coming story and photographs of our daughter and others make all of us visible.

~Many Blessings~

Lisa  

Re-Post ~ Just SAY It.....Or Not?

I have been blessed by an introverted husband and 6 introverted children out of our 8. However, this presents a challenge for a gabby girl like myself.  It literally took me years to recognize that being happy was not, as I perceived, about talking and laughing all the time.

I had a very special friend, Mary, who was herself quite introverted. She taught me well, that allowing shy children to hang onto my leg while we went to visit would ensure that they let go much sooner than if I was incessantly telling them to go play with the other children, pushing them away from me.  She was always so good at giving advice without me realizing I was being instructed.  Well, her advice worked and I learned that to let them be themselves, as different from me as that was, made them more secure, more confident and led to more good times for them.

This lesson carried over to my husband.  I learned that the very situations that exhilarated me, caused him to be acutely stressed.  People are just too fun to me. All kinds of people from all kinds of places talking about all kinds of things......yippeee.  For him that meant too much noise, too many people at one time, too much effort at trying to talk to people he didn't even know. Stress. We came to a middle ground early in our marriage with things like big events. I would go by myself or with friends since it really was just torture for him and I would spend my time worried about him or stressed that he wasn't having a good time. When we each finally accepted who we were, doing our own thing was FINE. Accepting our opposite personalities was key to being happy.

I recently read an excellent book that I recommend highly to anyone who loves an introvert. And, by the way, the word "introvert" is not necessarily the same as "shy" according to the author. The book is called Quiet : The Power of Introverts in a World that Can't Stop Talking.  It's by Susan Cain and is meticulously researched.  I learned so much about my children, my husband and all people who are not extroverts and those who are in- betweens.  It explains the strengths of introverts in a world that overly values extroverts or extrovert impostors.  Excellent read.

Here is a wonderful Ted Talk by the author regarding her book. It's wonderful.....
Susan Cain TED Talk

As to the title of this post....Just SAY It.  This is what I consistently wanted to say to the introverts in my life. However, it isn't that easy. My extroverted kids and I tend to say too much. The results many times requires an apology.  The fact that the introverts in our family cannot just spit out what they want to say when they want to say it is foreign to me. I, of course, cannot even fathom this as I am a big mouth and love to talk to anyone. However, I also find myself having to apologize not infrequently (although it's less and less as I age). Sometimes my words come out so fast they bypass my intellect completely. It's lame and I hate it. Sigh......   This is not a problem for most of my family. How nice for them.

The opposite is true in our family of introverts they all tell me; at times they have much to say but do not or cannot say it. This causes problems as you might imagine. Feeling they are not heard, that their opinion is not respected, even anger as they push down what apparently needs to come out.  It takes time for them to form their thoughts and words. BUT when they do....they are almost always eloquent, thoughtful and meaningful.

However, feeling unable to say what one wants to say is frustrating.  We cope with this on a daily basis here and I try and teach my children that it is only in communication that they might hope to get what they need or want. Also to be able to convey something meaningful.  Not an easy job folks.  It's like them asking me to be totally quiet for a week...won't happen for me.

One of the most amazing things that happens every time we have a houseful of people is after everyone leaves, our introverts who appear to have not had a very good time AT ALL, will be able to tell you about all the conversations that were going on between everyone for the whole darn day!!  They can give you the run down on everyone, their emotional state, their ups, downs, etc.  It is seriously amazing! They ALL have this ability. They have radar. They really are people people just not directly.  Very interesting.

  

Another difference in the two can be seen in decision making actions that are carried out. (I hate to generalize because there are certainly those who have mixed personalities and of course better or worse work practices.)  Many extroverts can be quite impulsive, quick, prideful. Decisions come fast and are made without forethought or consultation with others. On the other hand an introvert will ponder, think over all sides, ask other's opinions and wait until the decision has been weighed carefully before handing over an answer.  You can easily see in this situation the value of an introvert in the work setting.

There is a large percentage of Fortune 500 companies run by introverts because of their ability to delegate. They are able to be calm, quiet and watchful and see who can handle what in which situation and this is key in a successful company. That whole charismatic, big smile, big personality CEO thing is not necessary to run a successful corporation, store, family, or anything else. This is a societal lie. It is perpetuated in pre-schools, schools, camps, universities.  It is forming the self esteem of children and it isn't good.

 If a child wants to sit in a corner with a good book, this is just as valuable as the child who wants to hit a baseball out in the ballfield with the loud screaming kids. BOTH are okay.

Introverts have many qualities that were highly valued in the 19th century. This book tells the unfortunate story of how 20th century society made introversion a pathology. It is terrible really. But, the book also gives great hope and understanding regarding this personality type and it is well worth the time to read it. If you love someone who is an introvert it will give you GREAT insight into how they think, what gives them energy, pleasure, stress and the riches inside those quiet exteriors.

~Blessings~

Lisa

An article by Susan Cain the Author of the book mentioned above.

This and That and A Couple Re-Posts

I have been absent for awhile due to what else.....drum roll please.....medical mumbo-jumbo.  However, we have also had some wonderful chaos and that is a family wedding! It was just two days ago and it was lovely. Here is a picture for you.....

This is our son Michael and his lovely bride Bridget.

Anyway, in my exhausted stupor I was reading some old posts feeling sad that I had not written in such a long time, so I thought it would be nice to re~post some of my favourites until my brain starts working and I can enjoy writing as the joy and stress reliever that it is for me.

Please enjoy the following few posts.

~Many Blessings~

Lisa

Sundays and Caffeine......

I know, weird title huh?  Stay with me.
Here's a tidbit "73% of children consume caffeine on a daily basis" Read on.

 

I went on a retreat many years ago about keeping Sundays holy. It was an awesome retreat and I learned many things but one of the things I implemented immediately upon returning home to a house full of small to medium age children was making Sunday a very special day. A day different from the other six. This meant Sunday was not just a day off, not just the one day a week Daddy had off work, or a day with no school, but a day that was different in even the small things. Sunday meant it was the day we worshiped God at Church of course but I learned the whole day should be God's Day so it was a happy day, a day filled with good things and things we didn't have or do on the other days. It should be much like a holiday with friends, family, food and fun.

On Sundays we have always had picnics, gone on walks, played outside games, swam and had friends over. Daddy still BBQ's every Sunday and during the winter the kids handle dinner and Mom gets the night off!! Sometimes we're lazy and watch old MGM movies and play board games after church.

 

We have always lived pretty frugally because I stay home with the children and that was a decision we made before we ever had a large family. We knew what we were getting into. We knew it meant we weren't going to have "things" as much as we were going to provide time and ourselves to our children. What has this got to do with Sundays? In our home this means on Sundays we have things like chips, soda, cookies and other special treats. We don't have some of those foods and drinks during the week for several reasons, two of them being they don't fit into our budget as a daily staple and because for us they are not the healthiest foods for every day so once a week is enough for the kids to have some of them and really I think that's what "treat" means anyway.

 

So the retreat I attended combined with our lifestyle we had already been living makes Sundays our "treat day" as the kids always call it.
That oddly leads into the other half of the title....Caffeine.

 

I read something today that prompted this post. Okay I know I get all up in arms over stuff but this just blew my mind big time and I am all mad and well, you know....mad.  I had no idea about these stats and I am just shocked.....get the feeling I'm worked up?  I know...calm down Lisa.

 

Here's the link to a great article from a gal who is a physician, a mom and is very balanced so I am willing to listen to her. Her blog is called Seattle Mama Doc and I like it because her posts are short, relevant and down to earth. The post she wrote is about caffeine and kids. It's called  Caffeine Intake High for Children But Shifting. It was excellent and she did not flip out as I am.

 

Did you know that 73% of children consume caffeine ON A DAILY BASIS in beverages and food???  I mean I am just blown away by this.  This article is so good and not long at all.....please go read it whether or not you're a parent.  The really disturbing stat for me is that in the 2-5 year old group, the use is over 60% daily.....seriously???  No way my brain said....NO WAY. 

 

Yup.

 

No wonder some kids have so many problems in this country. No wonder. And folks I am not a health food nut in any shape or form. Ask my family or friends. Sheesh ask my Mother. I struggle to get my children...heck my HUSBAND to eat anything green all the time. But those stinkin' stats are scary.

 

I have to say though, that my not quantifying the stats is unfair until you read the article. It does not mean every kid is running around with Lattes and Red Bulls all day. However the energy drink craze is a real issue as is daily soda intake. Many times I have driven down my own road at 7:30 AM and seen kids waiting for the school bus with a Coke in their hand. Now I love Coke don't get me wrong but at 7 AM ? Waiting for a school bus?  Ummm, no.

 

Let's think about what that does to a student just before sitting in a classroom. How does caffeine affect me? I need it to speed up and get going. They need to sit quietly, listen, concentrate and behave. They have to cooperate and get along well. I cannot imagine caffeine (let alone sugar) is going to have a positive effect on any of those qualities in a child or adolescent and it is going to be a real mess if they have not eaten.

 Here is a quote from Roland Griffiths, PhD, a professor of behavioral biology at Johns Hopkins University: "The caffeine content of energy drinks varies over a tenfold range, with some containing the equivalent of 14 cans of Coca-Cola, yet the caffeine amounts are often unlabeled and few include warnings about the potential health risks of caffeine intoxication."

We have several children with cardiac problems and their cardiologist firmly told them to NEVER drink energy drinks. This cardiologist is not an old fuddy-duddy either, being a football player and accustomed to athletic habits, etc. but said the energy drinks have a combination of two chemicals that can be very dangerous to people with heart conditions. The other issue is for those who do not know they have a heart condition. Many cardiac problems have no symptoms until the problem is severe. Pretty scary.

 

How about this from our corporate world.....

 

*The Mars ™ corporation recently released a caffeinated version of the Snickers™ bar, called Snickers Charged™ (Mars, Mount Olive, NJ). 
*Caffeine-containing water (Water Joe™) can be purchased on the internet and in some retail stores.
 *The Jolt Gum website claims that having 144 pieces of Jolt Gum (equivalent to 72 cups of coffee) will “make you the most popular kid on the block” and that you “may even be able to get an A in art history” because of the “greenish speckles” (Jolt Gum, 2008).

I realize we should all practice and I am a proponent myself of "Just say no" to things you do not want your children to have. I do not want anyone including the government regulating what I can and cannot eat or drink, but who knew where caffeine was....right? They market it in water, gum and now candy bars. Whew. Just weird to me.

So that's the soap box I am on today. You all probably knew this stuff but boy was it a shock for me. So the special treats for our "Every Sunday is Special" days are going to stay that way and not become daily. So my weird title comes together here with..... there are few things anymore that are "treats". I think many years ago there were a lot of things that were had once in awhile as treats that are now daily expected things. Treat expectations have risen and risen and risen. So has disease and behavior problems and obesity and medical bills and entitlement. 

I don't know why it is but when you don't do or have something very often it sure does make it wonderful and many times healthier.
 

~Blessings~
Lisa

 

 

*   Neurosci Biobehav Rev. 2009 June; 33(6): 793–806.

Caffeine Use in Children: What we know, what we have left to learn, and why we should worry

Jennifer L. Temple

A Very Special Candy Shop

I haven't written in a long while. We are on yet another...that would be the 19th....medical trip to New York City for a couple of brain and spine surgeries on a couple of kids. It seems to be a hobby of ours unfortunately. These trips are both very difficult and wonderful because New York has become a second home for us. Among surgeons, appointments, scans, labs, surgeries, ICU and long term stress, there are also new and old friends and many places we have come to love.

 One very special place the kids must go every time we arrive in NY is Bobb Howard's General Store.  I must confess on the trips for my surgeries when the kids have not been with us Ed and I go too. This great little place is attached to an auto repair shop and you might miss it if someone didn't tell you it was there. Here in New York that's how you learn about EVERYTHING....someone tells you about it. Ed and I have found the most nifty places because a nurse or PA in the hospital or someone at Ronald McDonald House of Long Island said, "You've got to go to such-and-such".  We don't see this out west where we're from as much but it's constant here in NY.  I just love that everyone has their favorites to share and it's never the touristy places.  

A little side note here.....

 That reminds me to tell you that this is where you really learn that New Yorkers are so far from what people think they are. Yes, they are always running around fast and as they themselves tell me, "We are always running fast to get nowhere!" They may not notice you or may bump right into you and you will rarely hear an "Excuse me"out of them. Ya know, all the things people perceive as rude? Yet they are not rude, it's just the way it is here. But when you engage a New Yorker and talk to them....watch out because you'll be standing there awhile. They love to talk, love to visit, love to get to know you and with that great accent. This is my most favorite thing about them. It doesn't matter where you are; in a deli, a doctor's office, a hospital bed, at the grocery store or a diner, (I have had long conversations in all these places).....if you get a New Yorker talking plan on being there awhile. I Love It! This is how we found out about Bobb Howard's and a great little bakery, the best pizza in town (and there is always a debate about that!) and a burger joint a friend took us to that had the thickest burger my husband has EVER eaten. Everyone here has an opinion and a strong one!

Back to Bobb Howard's

This is Eileen and Ronnie

From the Bobb Howard's website:

Eileen and Ronnie, the owners of Bobb Howard's General Store are a couple of Baby Boomers who grew up on Long Island playing Hopscotch and Hide-and-Seek, Stickball and Stoopball, flipping baseball cards and Jacks, and playing Hit the Penny and Spin the Bottle. They met, fell in love, and have been "playing house" for over 39 years.
The General Store is attached to the family auto repair shop that Eileen's parents opened 67 years ago on Columbus Day, 1946. People often comment on the combination of the 2 businesses. For Eileen and Ronnie, it is a natural extension of the things they love. Eileen has an old '67 Austin Healey and they have a fun collection of old gumball and coin-op machines and old toys and games in their home, not to mention Eileen's childhood favorites: Dubble Bubble, Jujubes, B-B-Bats, and Red Licorice in almost every room!
The repair shop is a landmark in the neighborhood as they are now servicing 2nd, 3rd, and some 4th generation family cars, and the rite of passage for some of the neighborhood kids is to be able to go to Bobb Howard's on their bicycles by themselves. The General Store actually started out as a convenience store in 1982, then 16 years ago, Eileen, noticing the frenetic pace of today's computerized world, decided it was time for a change, time to go back to a simpler time, to have people remember what it felt like to be a "kid in a candy store" again, and go back to a time when games didn't require batteries. So she started slowly converting the fast-paced convenience store into an old-time candy and toy store where kids of all ages could come and browse and giggle with nostalgic memories. And as the saying goes, "The rest is history".
Word started spreading quickly about the store and soon customers, the newspapers, TV and radio stations were putting Bobb Howard's General Store "on the map".  Bobb Howard's now ships "Packages of Memories" all over the world and kids and kids-at-heart come through the door for a piece of "their past" -- for themselves, for friends, for generations past, and to share with future generations. Eileen and Ronnie feel very blessed. They love what they do, they love coming to work every day, and they love being able to put a smile on some one's face, even if it's with a nickel piece of bubblegum.

Ed and I in front with me holding an old glass bottle of Orange Crush! They have an old time ice box converted to a fridge filled with ice and full of glass pop-bottles of various kinds of soda.

Doesn't this look fun?

Row after row of candy you'll remember fondly from childhood!

The pictures say it all about how the store looks but it says nothing about how you are treated when you walk in. Everyone is special. Everyone matters. Everyone steps back in time to a place when things were slower, when people were not in a hurry, when your neighborhood shopkeepers knew you, your Mom and Dad, and your favorite ball team! It was a time when a nickel got you 5 pieces of candy. I can remember that time because when I was little there were still penny candies. This is what struck Ed and I when we walked into Bobb Howard's. We were greeted and stood there talking forever. By the time we left we knew each other's histories and they knew all about our crazy medical mumbo jumbo and were truly interested.

The next time we came they knew us right away and where we were from as soon as we walked in the door! After that we emailed a few times and knew Eileen had a serious surgery coming. We promised to pray for her and thankfully she is doing well. They ask about the kids and their surgeries every time we go in on our trips. They must see thousands of people and they remember us....amazing to me... and very unusual in our world now. What a special place.

So....when you're in New York come to Long Island, and Bobb Howard's General Store .If you never come here go to their website and order some old favorite candies for yourself or friends and family. It's so fun to eat them and go back in time!
~~~~~~~~~~~~~~~~~

581 Lakeville Road, New Hyde Park
516 354-9564
oldcandy@aol.com

~Blessings~

Lisa

P.S.

They were voted: