HAIRCUTS AND IRISH GNOME SILLIES

I'm still here. Critical thoughts. And most recent video link. Please read

Once upon a time, life was easier?  Probably not.  but let me tell you, as a Mother... I will never give up on my children.

We are currently raising money, because the state is reducing Daniel's benefits, and our home needs ALOT of mold removed, especially with a fragile child.    Daniel is 18 now.   Over the years, more and more people have simply slipped away.  Family???   We can't see them because travel is hard on us, and accomodations are complicated.   Holidays?  We can't plan them, because 99% of the time something happens which can alter plans.  Special Events?  We don't even get invited anymore, I think most people assume we are just aloof and disconnected.    Church?  We have a wonderful church group, but they don't even know us anymore, because getting Daniel to church is a challenge and I am trying so hard to get "better" too.  So I pray and watch sermons on my own.  Friends?  Youtube, Facebook, and a few local people connected to Thomas's events.  Thats basically the extent of people who reach out.    Most people we were friends with, when our kids were young, are gone.  BECAUSE our kids are growing up, Sarah is almost finishing college.  Thomas is in highschool.   Everything with him is music related, which is lovely.    But I spend all of my time with my husband and by myself.

And with Daniel, of course.   Nurses?  wonderful human beings who fill a void in my life and also care for my son.

Most people have children, and as they reach this point in life, the kids are grown, and retirement is in sight.  Vacations, hobbies, having "fun" together....    We will not have that.   It does not mean we don't love, and care, and laugh and share.    TO SEE DANIEL SWIM IN THE GULF OF MEXICO was the biggest blessing and joy of my heart last year.    Now that he is 18, more and more is being taken away.   We work harder, and get less, work even harder....  get EVEN less.

But he is 18 years old now....  and that in itself is a miracle.  He is a miracle, most people clearly don't have time to even think about him, or me, or us..  because OF COURSE we all have such busy lives.  Everyone has their own bubble.      So most "normal people" or people who have no financial limitations, or people who have normal healthy kids....  just don't know the kind of pressure bubble we live in.    And most families with special needs and medicall fragile kids live in.   Over the course of 18 years I have watched a community of love and support, programs and funds and fun groups and friends....  simply disappear, or tell me, sorry he is too old to apply.  

I have worked my brain into oblivion, trying to keep the house, work through bills, get things fixed, put kids into college, pay for things that would make most people go "HOLY SHIT THAT COSTS THAT MUCH??"  and answer, yes, because its for a special needs person.

And I try to be a mother, friend, daughter, supporter, cook, cleaner, and put income back into the house.    All the while, ALWAYS scared inside my conscious that my son will die.  Always afraid of the next phone call that will send me panicking.  Knowing that I have two choices, fight or die.  Its honestly that simple.  I have to fight.  Am I tired, yes, I am very very very tired.  Will I ever stop? No. Never, unless I die.  No one else is going to give my son help that he needs, I have to push and push and push.   And we are not talking millions here.  Just basic life necessities.

And after 18 years, when asking for help from people who can help  feels like crap, because people really don't want to help, and you have become a nuisance.  Or, they assume you are careless, uncivil, not acting like a responsible adult, or just screwing things up.  And you start to question and doubt yourself even more.    You are not their responsibility ultimately, after 18 years how could Julie and and John possibly not have everything all "together"? Your husband works really hard, but feels like a complete failure even having to think about asking for help.  (and your job is to build up his confidence too).      And failing someone else, making someone else feel bad, is just added to the guilt pile.  No matter how many times you say thank you,   And makes you FEAR asking for help, because you know you failed them by not showing enough gratitude in the right way, and at a right time...  and you feel SO BAD about it.  For months and months and months...because you really are GRATEFUL, and really do love them for helping.    And it gets complicated, and makes you feel so sad.  REALLY sad.     And honestly, truly, you really just needed help.     I hear this type of emotion from alot of financially needy families trying to care for a sick loved one.   When everything is exhausted, when you can't get a loan, when you have had so many tag sales that you live a minimalistic life, when your credit sucks no matter how you try, when the only entertainment you have is a drive to the dump and cup of coffee with your husband....      You just have to ....  what.... give up?  

Can't give up Julie and John.  Because the state just took away therapy.  The Attorney just sent you a big bill (the state was supposed to pay it) but now they are charging YOU for guardianship... no one told us that.  Giving up is never an option.   And we are not careless, immature, stupid people.  We are NOT perfect, but we are two humans who love eachother, love their kids, and love having happiness.    Anyhow...

 When the real truth is, you are simply trying to make it through each day keeping a child alive and smiling.  

The fact that we still have a house, and live in a lovely community, with wonderful schools, and can survive in the state of Connecticut....  for the sake of our typical kids, is wonderful.    Do we have savings? no.  Do we have retirement plans? absolutely none.  Do we see beyond next week, pretty close to impossible with this kind of pressure.   One little vest machine, $15,000.  Monthly medical out of pocket costs? varies from $500 to $5,000.  Lawyer bill to become our own child's guardian?? $800.  Repairs to a 2004 lift van that is literally starting to fall apart?  just to fix the lift? $2000   Mortgage, insurance, taxes, electric bill, phone bill, oil bill, home repairs, food, gas, car payment, medical expenses for Julie....    you know...  we have the normal stuff.    Should John's salary be enough to cover it? Yes.  it would.  But then, you have to LUMP all of the Daniel expenses and liabilities....  and we sink to the bottom of the ocean like a brick.  

So each month....  we just wiggle and jiggle and get through.

Sometimes, just sometimes, I wish someone would realize that I am not a perfect human, and I just want to have joy on this journey while we are actually on this journey.  Lonliness was never a part of the plan for me.  But sometimes, being alone is better, because it hurts to much to be with people who have zero compassion for the struggle that is "real".    Surround yourself with love, and if that love comes through the computer, then fine.  Thats cool.  One day, someone left a potted flower on my door step, that was better than anything I could have received that day.  Because it told me that someone, somewhere.... cared.  And that I wasn't actually as alone as I thought.

It is now May 5, 2016.  I am trying to raise 18,000 so that I can remove the mold from our house.  I just successfully completed a "bank modification" of our mortgage which took almost a YEAR! And just getting that completed was huge.   Our bankruptcy from 2009 has dropped from our record.  That is such a relief, we had such a struggle.

So one family, one hard working husband, one crazy dedicated Mom, and three amazing children.  Living in a bubble, that is always on the verge of popping.   Someday soon I could have a stroke, or get sicker, because staying healthy has been a ridiculous challenge.  But people say "do things for yourself"   Bah ha ha ha ha ha ha .  When?  When might that be?  The only thing I do for myself is my You Tube channel, and write.   The rest is for them, I love them. I just want to smile alittle more.  Is that so much to ask.   Making sure Sarah and Thomas have JOY in their lives, and education that will help them...  is so important.

Do you really have any idea how hard it is to raise and care for a child/now man who will never speak a word to you?   Who walks the line of medical fragility beyond which you have any control?  Who you love and adore, whose morning smiles can make all the pain disappear?

Do you really know how mentally and physically and emotionally exhausting it is for special needs parents?   Maybe you are one, and you are reading this and nodding.   Maybe you don't care.   Maybe you are too practical and don't understand me.   I don't know.   I just want the world to know a few things....

I AM GRATEFUL.  FOR ALL HELP.  FOR ALL LOVE.  FOR LIFE.  FOR THE SIMPLE THINGS.  SOMETIMES I MAY NOT SHOW IT, BUT ITS USUALLY BECAUSE LIFE CONSUMES MY THOUGHTS.    JOHN AND I ARE VERY VERY VERY VERY VERY GRATEFUL.  HE FEELS LIKE A FAILURE AND FEELS DEPRESSED, ALOT BECAUSE OF HIS PRIDE AND WANTING TO DO IT ALL.   I AM CONSTANTLY TRYING TO GET HIM TO OPEN HIS HEART AND TRY NOT TO BEAT HIMSELF UP.   WHEN WE DO ASK FOR HELP, HE OFTEN GOES INTO DEPRESSION.

I HAVE DEPRESSION, A VERY BAD SITUATION. BEEN GETTING HELP FOR YEARS.  ITS LED INTO COMPLEX PHYSICAL PROBLEMS BUT I DEAL WITH IT.  HAVE NOT SLEPT MORE THAN 3-4 HOURS A NIGHT IN WHAT, 10 YEARS?  WHO KNOWS.

I LOVE MY FAMILY MORE THAN BREATHING AIR.

I NEVER PLANNED ON HAVING A CHILD THAT WOULD BE SUCH A BURDEN TO SOCIETY, FAMILY, FINANCES, AND SCHOOL ETC.   HE IS YOUR BURDEN APPARENTLY, BUT TO ME, HE IS MY CHILD.     HOW DO YOU THINK I FEEL, INSIDE MY CONSCIOUS, THAT IF I HAD NOT CONTRACTED THIS STUPID CMV VIRUS, DANIEL WOULD HAVE BEEN BORN A NORMAL PERSON.   ULTIMATELY IT IS MY FAULT.  EVEN THOUGH I HAD NO CONTROL. THIS IS THE FIRST TIME I HAVE WRITTEN THIS DOWN.

I AM HERE.  STILL HERE.  IN MY HOUSE.  CRYING ALOT. LAUGHING ALOT. HURTING LIKE CRAZY FROM MY STUPID PHYICAL EXHAUSTION.  STILL DREAMING OF BEING ON A WARM BEACH AND FEELING SORRY MYSELF, BECAUSE SOMETIMES I DO.  I ADMIT.  I FEEL BAD FOR MYSELF THAT I CAN'T HAVE YOUR VACATIONS AND LUXURIES, EVEN FOR A COUPLE OF DAYS.  I AM STILL HERE, TRYING TO ROB PETER TO PAY PAUL TO FIGURE OUT HOW TO FIX MY HOUSE SO THAT IT STAYS A HEALTHY ENVIRONMENT.

I WAKE UP EACH DAY, GIVING MYSELF THE "BE HAPPY" MANTRA.  AND PICK UP MY CAMERA AND VLOG, BECAUSE IT HELPS ME FEEL LIKE I HAVE A PURPOSE.

I AM TURNING 50 IN JULY.  I AM A MOM.  A WIFE. A FRIEND. A HUMAN BEING.

And is just wanting to keep your sick child alive, such a bad thing?  Where has everyone gone?

Oh.  And my dog Henry.  He is my best friend.   And sincerely, thank you, to those who have helped and cared over the years.



Julie Hasselberger

December already? We just had Thanksgiving!!!!

December 2, 2013

A Monday morning it is, gray and dismal I think.  Adding insult to injury the septic truck just came and cleaned out our septic! Now the three words are gray, dismal, and stinky.  But somethings we have to do are simply stinky, but necessary.

Thanksgiving was alot of work for me physically.  I cleaned and moved furniture and sorted and cleaned again.  The fibromyalgia is so bad right now that I could hardly move on Thanksgiving morning.  But I overdosed on Advil and pushed myself.  It was nice to see family, and especially nice for Daniel who can see his family and also be in his home with his nurse.  Daniel is now 16 years old, and yes he had a spectacular birthday!!!  Lots of birthday cards came, and I am STILL working on them, but he has a giant mural of them in his room and some of them will be framed and put into scrap books for him to enjoy.  He loves looking at them.

I ate way too much pie.  Just had to say that.  After everyone had left, I had lots of pie.  I am feeling depressed so having a giant apple pie in my face was not particularly a good idea.  Oh well.

Daniel is doing pretty well. He just is not sleeping through the night.  He is having sleep study this month, to see if there is any apnea going on at night. I suspect, as does his pulmonologist at CCMC that he is having breathing issues at night.

Needless to say, I'm basically exhausted all the time.  When I can get a good solid nap in, I feel somewhat healed from the fatigue.  I did see a rhumatologist recently, but I just don't have the time to follow up on all of the things they want me to do right now.  I'm a pretty sick lady.  Kind of a hot mess really.  But I push myself through it.

One of the things I loved about the cards, was how many were sent from the support group families.  It touched my heart really really deeply.  They know.  They understand.  This journey is not a solo journey.... I think it is like a virtual giant NYC marathon of families all over the world.   We are all at different points in the race, but we are moving along facing very similar challenges.

Daniel is the love of my life.  As are my other children.  But he just has something in those eyes that is so pure, innocent, and true.  He brings out the best in me, that's for sure.

So where are we today, on December 2, 2013?  Daniel is at school with his nurse, Marques.  Thomas is at school at Newtown Middle School, he is in 7th grade, he's my little Baritone sax playing prodigy.  Sarah is back to college after 5 days home for the Thanksgiving break. She will have finals soon, and its amazing how fast the semester went by.  Henry is napping in his crate.  The cats are sleeping.  John is at work, he works at Hologic in Danbury, (breast imaging equipment people).  And Julie? Well....  I am sitting at my desk, in the quiet, writing.  By my side is an enormous PILE of bills, cards to send, and a list of people I have to call. Bloodwork, endocrine, flu shot, follow ups....  I am completely overwhelmed with how much everything costs, and simply trying to juggle it all.

I'm shivering.  I don't know why because it's warm in here.  It's all consuming, and quite depressing because I never get to the finish line of anything.  In front of me, in a file holder is a folder that says, "Nursing College", my biggest dream is to go back to school and get my BSN.  However, it is the farthest dream from reality right now.  I have too many issues in my house to contend with.

So carry on through this Monday morning, as gray and dismal as it is.  I wish I had the stamina to search Cyber Monday sales.  Christmas will just have to wait..

I'm sure I gained weight over Thanksgiving, when you are depressed, stressed, and have to walk on eggshells all the time, food becomes an obsession.  Yes, I need therapy with this obsession.  I wish I could get like, Oprah Winfrey, or Dr. Phil, or some famous person to scoop me up, put me on TV with all of my life story, and fix me.   I would love that.

Instead, I am going to spend time doing what is the best thing.  Praying.  Praying. Praying.  Time to go.  I need to upload videos to my Youtube channel, Julie Hasselberger.

Have a wonderful day friends.  Please do something kind for someone else today.  Acts of kindness are necessary food for the soul.

A BIG decision, being Christlike, Fibromyalgia, and Happy Birthday Daniel

November 13, 2013

It's cold outside, the chill and gray colors have slowly replaced our warm fall leaves and yesterday we had our first little snow fall in the morning.

I remember last year, anticipating Daniel's surgery with great fear but with great excitement as well. And now a year almost later, he has shown that it was definitely a great decision.

Daniels spine AFTER

Daniel's spine before!!

 

Making great decisions is not always that simple. There can be great risks involved that really completely lie on your shoulders. The life or death decisions for your child.  But I have felt all throughout Daniel's life that having a concept of "giving him the BEST quality of life that we can" has to continue to be the focus.  It doesn't mean we want him to do things that we do, even if he can't, like forcing him to eat and aspirate. It means preventing illnesses and dangers that will make him sick, and possibly fatally sick.

My life has been a non stop road of managing Daniel's care, dealing with troubled emotional relationships, facing the demons of depression, living in a world as a complete anomaly as a Mom. For instance,always being the only Mom pushing the wheelchair across the Night Hawks football

Daniel at football, number one fan, always with an entourage

field, accepting myself as a caregiver and accepting that I left a career behind to care for my child, desperately trying to make ends meet financially since only one full time job doesn't pay it all when you have a medically fragile child in your home, non stop advocacy and management of so many issues in the special needs world I simply can't list it, being there for my daughter as she went through High School and into college,

Sarah's graduation day 

and being there for my youngest son as he moves into his teen years.  Of of course there is a marriage of 21 years full of ups and downs with many days where I just cry myself to the point of dehydration, and then we face eachother and agree that we need to keep trying and do still have love, but need to heal,  and managing the home.

Probably should also mention, that I have been stricken with incredibly bad fibromyalgia to the extent that some days I am so stiff and in so much pain that I can't function.  The pain limits my enthusiasm for exercise, and my tendency to eat my emotions leads to weight gain.  Weight gain makes it harder to breath at night and then you don't get enough oxygen, and that prevents or slows down weight loss.   I spend every day in pain.  And sometimes the pain management is helpful, but other times nothing seems to help.

So the cold just rips through me like knives.  It is bad.  But I never falter in my daily trek of getting up to change Daniel and get him ready for school. 

Now we face the end of the 2013 year.  So much has happened since this time last year.  Good things and bad things.  Today, I am focused on birthdays that are coming. Sarah is 18 on November 20th. And Daniel is 16 on November 22nd.  

John says there will be no bonus for Christmas this year, and honestly I can't even think that far ahead. I have too many things juggling in every crazy direction.  I am in such a bad financial state most of the time, that just keeping things running is a great achievement.  Sometimes, it gets good, but then whammy bam bang boom, something goes wrong. Again.  And I carry on.

Working flexibly part time now, has been an interesting adventure.  I became licensed at the end of September for Property and Casualty, auto, home, life, etc.  for Allstate Insurance with an agency in Monroe, CT.  I really like the agent in the office, but he hasn't been able to pay me since August due to cash flow struggles. He is a great insurance agent, but his partner died in December 2012, and its been a rough road for him.   So ironically I'm working for free when I really need to be doing other critical Daniel related things.  And the money I am earning, is supposed to be paying bills.  I don't know what I am going to do.   

Isn't it ridiculous that my dream is to get myself into an excelerated BSN program and become a nurse.  If I can embrace the ugliest parts of the medical world, many which I have seen, I know that would completely love it.  

All I want to do is find a career where I can give back to the world.  I'm not sure that insurance is that place.   So how do I wriggle my way out of this when I can't seem to get to the end of each of month with a panic attack followed by a few days of meditation and prayer to revitalize my soul.  

So many people over the years have reached out to help Daniel.  In my heart, every time it happens, I just want to turn around and say God, What can I do?  How can I be your vehicle to give back.   

And the answer to giving back is never quite clear. Except sometimes a miracle happens when a child will meet Daniel, and learn about the world of a medically fragile child like Daniel, and that child will take on the task of volunteering, and helping a child like Daniel.  Years later, I learn that some of these kids are doing all sorts of volunteer work, and in a round about kind of way...letting them know Daniel, has given back.

I am just a 47 year old woman.  I'm no where near perfect.  I have many flaws, but I'm also not the career driven person that I was back in 2000.  I have an MBA, in Human Resources.

Before Work one morning...

Not only did I complete my degree while working full time, I was integrally a part of executive management and I truly most enjoy the training and development part of my job.  People make me tick, helping people, seeing them succeed.  There was nothing more exciting that promoting someone who had worked so hard, and seeing their face light up during that meeting when we promoted them.  I loved my job.  

As time went by, however, little Daniel in daycare became bigger Daniel with seizures, surgeries, sicknesses, and school issues.  His needs would make me worry at work.  Phone calls would come and I would have to leave, always promising to come in at 6 the next day.  My company didn't care about Daniel.  And the race home to Newtown worrying about him, because so bad that I would pray for changes.  

Daniel had his first hip surgery in 2004 I think??  I don't remember exactly. But by then I was no longer working.  I remember sitting with him, right after that double hip osteotomy and hamstring lengthening, and watching him in pain. I would demand that the nurses get the pain team, because he was having a reaction to morphine, and I learned how aggressive I needed to be to help my son.  It was during that stay at Yale when looking into Daniel's eyes I promised him I would be completely there for him.  No more nanny, just Mom.  No matter what it would take.

Now this also came at a time when our medical bills were so enormous, and our other bills were piled high, and we had exhausted all resources to make minimum payments, and more kept coming.  John's insurance didn't cover everything.  Daniel had to go on a long long waiting list for state insurance through a title 19 waiver.  So it was 5 more years of hell.  Of almost losing the house, of filing a partial bankruptcy to clear out the giant pile of debt, thankfully keeping the house and assets.  Well, whatever assets there were.  We had a very helpful and compassionate lawyer who helped us get through a bad time.   And of course, any past debt issues like that haunt you for years, resulting in problems from a parent perspective with Sarah's college.   I just keep going.  It's all you can do.  And I say it, again, and again, and again, and again, "this society, our social programs, our country, does not care about the middle class families who have this type of extremely debilitating circumstance." They want us to be living in poverty with absolutely nothing before they provide any help."   I posted an interview with Russell Brand a little while back, on one of my blog entries.  I won't keep going on that topic.  It makes me cry.

At some point, once I had become full time advocate, Mom, financial manager, care giver of Daniel, something inside my body triggered the Fibromyalgia.  I began hurting physically.  Hurting all the time.  Depression got worse, and I was not sleeping.  Everything got harder and harder, even though I tried to keep a smile on my face.  I kept wondering WTF am I being punished for now? 

As I've mentioned in the past, Daniel had a virus in utero called CMV, Cytomeglia Virus. It attacked the formation of his brain. The virus came from me, obviously.  And it is quite logical that the virus also was the trigger for the onset later in life, of the Fibromyalgia.  There is medical evidence, even though no one can admit it.  If YOU have never heard of CMV, and you are pregnant or planning on having children...please educate yourself about it.

So the journey goes on.

 Julie managing pain. Julie managing Daniel. Julie managing Sarah and Thomas with all of their unique needs and dreams. Julie managing the financial state of affairs. Julie reaching out for help. Julie going to years of pyscho therapy, which I am not afraid to admit.  And Julie begging her husband to deal with his own depression, anger, and physical issues...all to no avail.  So the anger cycle in the house was never broken, and Julie had to do all of the above, always never knowing when an explosion would rock the house.   With compassion, and patience, praying for her husband to understand things from her, well, from MY point of view.  I'm not sure that he has ever accepted the fact that I believe Daniel needs a full time care giver and "manager" per se.   He blames all of our problems on my decision not to work full time.  Which is completely ridiculous in my opinion based on all that I have done for Daniel's life.

So you see, there is so much when you peel away at the layers.  One thing attributing to another thing...  complicated.  I have always been a type A person, wanting to resolve problems. Desiring to talk things through. Advocate of therapy. Wanting to put things out there and face things.  But within my midst was the opposite point of view.  Such as, keep things private. We do not discuss our family issues in public.  Things should be kept quiet. People should take care of their own, and not others. And so on.  This, to me, is a torturous and lonely existence.  Because I believe that God calls us to be brothers and sisters.  I believe that we are on this earth together as one, and part of our love for Jesus is to let him live through us.  That is my spirituality. I don't prescribe to a list of specific "you must do this, and you must do that" or else you do not get into Heaven.  

ON my baptism day at Walnut Hill  community Church

I have let my spiritual self evolve by opening my eyes to the Lord and letting his spirit guide me.  A personal relationship.  And through our personal relationship with God, he calls on us to be loving and to help eachother.


So, no, I will never live in a bubble of "our family is a quiet, non spoken, private, affair".  As you clearly can see, I affirm that in my approach to life.

As do many many other great prophets, philosophers, and just people in general.  But needing eachother, and helping eachother, we are learning and growing in Christ.  To be Christlike, to me anyhow, does not mean to just care about yourself.  

And so, I reach out. I embrace others. I love the children, and the animals. I ask for help because I honestly and completely need help. The universe will present to me a miracle some times, and other times I face stress.  I love this town of Sandy Hook, CT. It is my home.  It is the home of my family.  I do not want to leave here, because the schools and the teachers are so incredible.  My friends and neighbors are beautiful people.  Yes, it is the place where tragedy struck on 12/14/12 and yet, the compassion and love that emerged from that surely made the bonds much tighter.   So I do everything I can to keep my house, to provide for my family, to support my husband while he works so very hard at his job, and to, again, keep the concept going of "giving Daniel the best quality of life that we can".

No matter what it takes.  

Please send a birthday card to Daniel, he is turning 16 on November 22 and we are having a "Card Shower" for him.

35 Bennetts Bridge Road
Sandy Hook, CT  06482

Thank you, if you are one of my friends who has come to the end of this blog entry.  I love you.  I am so grateful for friendships, for prayer, and people who genuinely understand how hard this journey is.  I will be forever grateful and forever have you in my prayers.  

Wow.  All that I just wrote there..  Came out of me like lava.  lol.

Mommy's Pain

OK world. This is a real illness.  I was diagnosed many years ago, and it has been getting worse and worse with stress.  Making it hard to do anything.  My family thinks I'm lazy because suddenly during the day I need to lay down and sleep.  I can't help it...it feels as though someone pulls the plug on your energy.

I have pain on all 18 of the tender points...  the worse ones today are my shoulders, back and really bad pain on the back of my head behind my ears. My neck is swollen... and my entire body just aches like I have the flu...  almost constantly.

Caring for Daniel never stops...  but it hurts my body

It gets exhausting that so many people do not recognize that this exists...  they just tell me to exercise, lose weight, take vitamin D, and it will go away.  Those things help reduce the pain of symptoms...but Fibromyalgia is Chronic.   HAH!!!  even the spell checker does not recognize the word.

 Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

A TYPICAL Julie Chronic Fatigue Nap attack

Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.

Women are much more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.

The pain associated with fibromyalgiaoften is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.

Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:

• Back of the head
• Between shoulder blades
• Top of shoulders
• Front sides of neck
• Upper chest
• Outer elbows
• Upper hips
• Sides of hips
• Inner knees

Fatigue and sleep disturbances
People with fibromyalgia often awaken tired, even though they report sleeping for long periods of time. Sleep is frequently disrupted by pain, and many patients with fibromyalgia have other sleep disorders, such as restless legs syndrome and sleep apnea, that further worsen symp

Anyhow, I just felt like writing about the fact that each day of my life I wake up in pain.... I take Lyrica, Ultram, Effexor and Wellbutrin along with alot of advil...  and once it kicks in I can function.   Depression and feelings related to the stress of home often put me into a hopeless cycle of not exercising and getting tired.  But if I force myself to just walk...get fresh air...  I feel better.   I really know what helps....but I have to manage three children including Daniel.  

It is stressful even just trying to de stress the stress.   And a life of pain becomes a physical life of pain.  Makes you really wonder why sometimes.

Just keep going Julie..  Just keep going.

Random thoughts Starbucks inspired on a Friday night...

As I sit here, on September 7th...its Friday..  and across the street Thomas is playing football.  And across the table from me Sarah is doing her psychology homework drinking an iced tea...  and across town Daniel  is in his room with Marques (nurse) relaxing after a very long day.

Across my mind go a myriad of thoughts...every day.  Will I be able to survive the next storm?  What is emotional abuse anyways, and maybe my perceptions are skewed, although my inner me tells me...nope...you are screwed.   And what about all of the financial issues, making survival happen while taking care of Daniel.  Will I get what I need to send Sarah to college?  Why in the world does my face hurt under my eyes when I touch it?  So much pain...  so much ache...  fibromyalgia? or just insanity.  Nope, definitely fibromyalgia. Face? Probably chronic sinusitis.

Its all catching up with me...and once someone told me that I could not sustain my pace forever.  Well, I am going to die trying.

Raising Daniel has been a joy beyond words, trickled and sprinkled with bits of this and that.

Across town, Daniel is probably lying in his bed...with his body shaped like a letter C...or maybe an S because his spinal curve is getting worse. And worse. And worse.  And how fair is that for him?  He is the sweetest, most innocent guy ever..and he endures the worst of the worst.  But maybe it doesn't affect him when Daddy yells at Thomas and Sarah...because he doesn't get yelled at.  He is exempt...  because he is helpless.

Daniel has redirected my life, and that is not to say that I understand or even know which direction I am going in.  I am being steered into a foggy abyss...without a clue as to what each day is going to bring next.

Sitting here with Sarah in Starbucks, while Thomas practices football, while Sarah does her work, while Daniel is probably watching a movie at home...  just sitting here thinking how good this coffee is.  And how much I really don't want to be home right now.

So now I feel like going into my pictures....  lets see what I can find...and I'll post them here... in my randomness of thought...   Yes...I seriously feel like a mother gone insane.  I hope you enjoy the pictures...

It is a tough role that I face...that we face. Day by day...minute by minute...