My Journal


      Today my grandfather, Bill Bowen, would have been 94 years old.  He died at the age of 46 from an inoperable brain tumor.  My mom was only 15 at the time, so I never had the privilege of knowing him.  However, my mom and my aunt have told me many stories, keeping his memory alive so that I can know him also.

     One thing they have told me many times is that if he were alive, he would love me dearly.  That is something that I have really held on to, as I was never close with my paternal grandparents.  I talk to him a lot because I really feel that he is watching over me, my very own guardian angel.

     My Papaw was not only a wonderful father, he was a brave man who served his country in the U.S. Coast Guard during WWII.  He saw battle aboard the USS Glendale and also served on board a submarine at one point.  He was also very creative and good with his hands, building furniture from wood and other items with metal.

     I am very proud to be his granddaughter.  Happy Birthday, Papaw.



My aunt and I have a tradition of either calling or emailing each other on September 30th each year.  All we have to say is "9-30-55" and we know what that means.  It is the anniversary of the day the world lost a legend, the undisputed King of Cool, James Dean.  For an actor who only appeared in three movies, his incredible talent made him an icon who has stood the test of time.  It is hard to fathom that he has been gone almost 60 years.  He will remain forever young.  

R.I.P., James Dean

St. Therese of Lisieux

      I recently came across a quote from St. Therese of Lisieux that I wanted to share.  It's ok if you're not Catholic.  Whether you are religious or not, spiritual or not, the message of strength and courage is what spoke to me and is especially relevant to those of us who suffer with chronic illness.

          "I realize as never before that the Lord is gentle and merciful; He did not send me this heavy cross until I could bear it. If He had   sent it before, I am certain that it would have discouraged me . . . I desire nothing at all now except to love until I die of love. I am free, I am not afraid of anything, not even of what I used to dread most of all . . . a long illness which would make me a burden to the community. I am perfectly content to go on suffering in body and soul for years, if that would please God. I am not in the least afraid of living for a long time; I am ready to go on fighting."

— St. Therese of Lisieux

     It really struck a chord with me.  What a strong and amazing woman!  I have always been a believer in the idea that everything happens for a reason - even the worst things that have happened in my life.  For every dark cloud there is a silver lining.  Looking back, I can see the good things that have come as a result of the bad things.  They made me a stronger person, more grateful for what I have and even more importantly, who I have.  My faith has deepened and I have grown to not be afraid of dying.  The struggle lies in being unafraid of living.  God presented me with the cross of living with LPHS when I was ready for it.  Had I been diagnosed when I was a teenager, I would have been unprepared.  I'm not speaking in terms of maturity, but in terms of spirituality.  

     I grew up Methodist, but I never felt a connection to the church.  I have always had an interest in Catholicism, the traditions and pagentry were very intriguing to me.  When I was in my early twenties, after my parents' divorce, I felt I could finally be free to follow my own spiritual path.  It was one I would pursue with both my mother and aunt.  After confessing my interest to them, they were very supportive and were compelled to join me on my journey.  We all came into the Catholic Church together and I finally felt what had been missing in my spiritual life, a sense of contentment and feeling that I was at home.  Had I been diagnosed before that time, before I had become closer to God, I don't think that I would have been as equipped to deal with the disease and all that is associated with a chronic illness.  I strive to be more like St. Therese, unafraid of living and ready to go on fighting!

I hope everyone has a wonderful Labor Day weekend!

Take care and God Bless,

      I am in absolute shock over the death of Robin Williams.  He was such an amazing person, a force of nature whose comedic genius left us in awe and whose heart endeared us to him.  The world seems a little bit dimmer now that he is no longer with us.  It is the worst kind of irony that someone who gave so much joy to so many was so sad on the inside.  

     Depression is something that so many deal with, yet is not discussed due to the stigma that surrounds it.  Those with any form of mental malady are so often labeled as crazy.  Those who are depressed are told to simply "get over it", as though they had a choice.  I know the darkness of depression all too well.  When I was in my late teens and early twenties, there were circumstances in my life that devastated me and left me emotionally wounded.  I spiraled deeper and deeper, feeling that I was locked inside myself.  It felt like I was in a cage, separated from those around me.  My mother was so distraught and frustrated that at one point she considered having me hospitalized.  I am so incredibly lucky to have such a loving and caring mother.  She refused to give up on me and forced me to go to therapy.  She would drag me literally kicking and screaming, telling me that it was okay for me to hate her now but I would thank her later.  I absolutely do thank her.  My therapist truly was a miracle worker for me.  I would go into her office feeling despondent and I would leave with a weight lifted.  I worked with her and, together with my family and friends, I climbed out of the deep dark hole.  I have never been a person that considered suicide an option.  Even when I was at my worst, I still wanted to live.

     It is difficult for me to imagine feeling so hopeless that I would want to end my life.  I have known people who have committed suicide.  Their friends and loved ones have emotions that run the gamut from sadness at their loss to anger, feeling that their loved one voluntarily left them behind.  It must be agonizing to come to a decision that involves ending your own life.  I don't know what that feels like and I pray I never do.  There are those who think that suicide is a selfish act.  I think that every case is different, people have different reasons for commiting suicide.  There are those who wish to spare their loved ones from a terminal disease, not wanting to be a burden.  In cases such as Alzheimer's, many patients lose what made them an individual, a lifetime of memories and worst of all, not even recognizing those closest to them.  There are those who wish to not only spare themselves, but spare their loved ones so that they may remember the person as they were in better times.  There are a myriad of reasons that people may choose suicide.  If you know someone who is depressed or dealing with a very difficult situation, try to get them to speak with a doctor or therapist.  

     After dealing with my situational depression (depression that is triggered by an event), I later dealt with depression that was due to a chemical imbalance in my brain.  I was confused at first because there was no obvious cause of my sadness.  I went to the doctor and was put on anti-depressants.  After a week or two, I began feeling better.  I remain on the medication and have not had any problems.  It is important, especially for those of us who have ongoing illnesses, to be aware of our moods and any signs of depression.  Remember that it is not a sign of weakness to ask for help, but rather a sign of strength.

Take care and God Bless,



      My fingers are still recovering from all of the tweets I sent out on Friday for LPHS Awareness Day!  I sent tweets to my followers and to every high profile person I could think of.  I realize that most of these people will never see the message, but I will do everything I can to help spread awareness for this disease.  I even wrote to my State Senator and The President.  Like the saying goes "Shoot for the moon, even if you miss, you will land among the stars."  At least no one can accuse me of not setting my sights high enough!  There was one really cool thing that came of my efforts.  I sent a tweet to Jenna Marbles, who is a comedienne made famous on YouTube.  Her videos have a lot of foul humor and foul language (not for children), but if that does not bother you, she is really funny and worth checking out.  She has been featured on Good Morning America, has won a YouTube award, has millions of fans and is now following ME on Twitter!  What?!  I was excited to say the least!  The tweet blitz also garnered me some other new followers who have now been made aware of LPHS!  In my eyes, it was a most successful day.  There were many other LPHS patients from the Facebook support groups who participated in spreading the word on Friday.  I was only one small part of the larger whole.  The more people who are getting the word out about LPHS, the better it is for all of us.  So, congrats and good work ladies and gents!

The icing on the cake Friday was a sweet note and magnet I received from some dear friends of mine.  They regularly send me uplifting messages either by email or regular mail.  I guess I'm old fashioned, but I love receiving items in the mail that aren't bills!  The fact that someone takes that extra bit of time to put pen to paper just makes it more special.  I took a picture of the magnet, which is now on my magnetic board above my desk, so I could share it with all of you and pass on the message.  

I hope you are all doing well.  Please feel free to drop me a line on my Contact page!

Take Care and God Bless!



      I think it is fitting that my first journal entry be on August 1st, which is LPHS Awareness Day.  I belong to several wonderful support groups on Facebook including "Living with LPHS" and "LPHS SOS".  I have met many wonderful people from around the world who are going through the exact same struggles that I deal with on a daily basis.  It is a comfort knowing that I am not alone.  I think that being able to communicate with others who understand your situation, regardless of diagnosis or issue, is so very important.  Whether we are sharing ideas that help us to better cope with our illness or just being a sympathetic ear when we need to vent after an especially rough day, it is cathartic in dealing with a disease that has yet to be cured.

     Since 2011, when I was diagnosed with LPHS, I have been unable to work.  However, it has given me more time to devote to my artwork.  That is, when I am feeling well enough (which lately has not been that often).  I have always enjoyed art whether it be drawing, painting, needlework or carving intricate pumpkins at Halloween.  I want to eventually offer pieces for sale here on the website, so that is something to watch for in the (hopefully) near future.

     That is all for now.  I know that I will not be able to add new journal entries daily, but I will do them as often as I can.  Thanks so much for checking out my journal, please feel free to share this site with your friends.

Take Care and God Bless!


- 1 - - 2 - - 3 -

Created by Ali Baldridge