Looking Forward to the New Year….With Great Hope

As I have written many times before, this year has been full of challenges, difficult times and some bright spots.  Over the past year I have seen Robby’s health decline (I started writing this in his hospital room), I have seen close friends suffer through some tough medical issues, we survive having flooring installed at home (this was done during one Robby’s trips to the hospital), I made an effort, as always, to celebrate everything (not always easy), there have been countless ER visits, hospital stays and a endless number of doctor visits.  But the important thing is that Robby and I have had another year together-that makes it all worthwhile.  I am always the optimist, even when there seems to be no reason to be.  So, that is what makes me hopeful about the new year, but I have decided to set my optimistic bar low-what I hope for is a year that is at least no worse that this one and hopefully a little better.  We will see how that goes, as time will only tell.  

I wish everyone a Happy New Year and that the year will find you well and hopefully with less stress and anxiety.

A Bright Spot in a Week Full of Stress

It’s seems lately that most of what I write involves stress, increasing stress and, of course, anxiety.  But this week was so overwhelming stressful that I spent most of the time either feeling like I couldn’t breathe or like I could vomit.  Robby’s Uncle Patrick and his partner David came down to So Cal because we had to go to court for Robby’s conservatorship.  That might not have been so bad except there is an agency that seems to feel the Robby is not receiving good care….seriously!?!?  But this same agency has the ability to interfere with the court.  Long story short we survived court and Robby is still protected and even more importantly still at home!!!

There was a bright spot in the week when we were able to have a really nice, and stress free, visit with Patrick and David.  It is so interesting to watch Robby with his Uncle Patrick, Robby just looks and looks at him, it’s like he senses a connection.  Obviously Robby doesn’t understand that there is a connection and that’s what makes it so special!!!

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If Only the Circus Were in Town

spinning-platesI have often referred to myself as the plate spinner at the circus and my belief that if I can keep all the plates spinning then everything would be OK.  Well, not to long ago I realized that the plates were falling around me…..now I have reached a point where duck and cover seems the smart thing to do!  I have tried everything I know to keep the plates spinning; I used nervous energy, my obsessive/compulsive tedencies, sleep deprivation, multi-tasking (not something I have mastered yet) and even my anxiety.  But still the plates keep falling down, I even tried asking for help-a last resort for me, but still no success.  I think it’s time to call in the big guns-I need the professional plate spinner from the circus!  Now, if only the circus were in town!!!

 

 

Is it me or is there is no air in here?

Lately I have been feeling stressed and overwhelmed and once again my old friend anxiety seems to be close at hand.  At times it feels like there is no air and taking a deep breath is impossible.  I have been juggling even more than the usual-house repairs, bills, money, legal issues, doctor appointments and tests for both Robby and myself and an endless line of grown up decisions.  I have also found myself having to defend my decisions regarding Robert’s health care.  And sleep, well that’s something that has not been close at hand.  I feel like I am just running and running and running and my fear is that if I stop I will fall face down. 

You see in addition to all the ‘normal’ stress in my life, my son Robby’s health is declining.  His underlying condition is degenerative and changes are not unexpected, but that doesn’t make them any easier.  I have felt blessed over the past few years, Robby was only expected to live to 16 years of age and this year he turned 29.  I see all those years are a gift, every year on his birthday I am thankful for another year with him.  

But now as I said things are changing and I feel helpless because I can’t stop it or fix it.  But a lot of the time I feel overwhelmed by the stress of making the right decisions for him.  It is a fine line between treatments that can help or at least make him comfortable and treatments that will be too hard on him or even cause him pain.  I wish his father was here with us, but in a way he his, when Robby’s problems were diagnosed we sat down and discussed what we wanted and didn’t want for our son.  We decided that we wanted three things for him; one was to be as pain free as possible, to be happy wherever he is at mentally and to be at home-his home.  Those decisions still feel right to me today, so what I am trying to remember is that I am not making all these decisions alone, Robert and I made them together and that does give me some comfort and even at times a little peace of mind.

 

Life, Plans and the Best Intentions

Lately I feel my life closely resembles the famous quote from Allen Saunders “Life is what happens to you while you’re busy making other plans”.  I keep trying to find some order and a tiny bit of peace in my life-I am not looking for perfection or even control; I gave that search up a long time ago.  But every time I get close to a small piece of ‘normal’  it seems like something else comes along.  Now, don’t get me wrong, I understand that life just keeps happening no matter what.  There are times like this past 10 days where life is just too much, too big and too overwhelming.

Over the past 10 days my son, Robby, starting having some medical problems.  He was in pain; he was agitated, restless, sleepless, had high pulse and blood pressure.  I took him to an ER after talking to his doctor.  They did a chest xray, some basic blood test and told everything looked good and I should bring him back when he could localize his pain.  Now this was an interesting idea, you see Robby doesn’t talk.  There were 4 more ER visits before a diagnosis was found.  They found a compression fracture in his spine-ouch!!  He is also having additional trouble with some pre-exisiting medical problems.  Even on pain medication he is still in pain and miserable.

As his Mom I feel helpless, there is nothing I can do to fix this for him.  The only thing I can do is arrange doctor appointments, try to make him as comfortable as possible and worry.  This has flared my anxiety and I keep trying to force it back down, there is no time for it right now.  That I find is more successful sometimes than others.  Right now my focus has to be on Robby and helping him, there will be time (hopefully) to deal with the anxiety and tears later!!!

 

 

 

 

Fear, Trust and Leaps of Faith

Way back when my anxiety started so did my fear and as my anxiety got worse so did the fear.   These fears were mostly irrational and some even bordered on the edge of paranoia.  It was a combination of the fear and the anxiety that  lead to my agoraphobia.  And it was my first big leap of faith to seek out therapy and a lot of trust to let someone in.  In therapy I even had to learn to have trust in myself.  Actually this made me feel like I was flying without a net.

Over the years I worked hard to decrease my fears and increase my trust-this was not an easy task.  But then something happened that has made it hard for me to trust.  I had a doctor that misdiagnosed me for two years, this was obviously someone I had come to trust.  After I made many trips to the ER on my own, I finally was diagnosed with cancer-stage 4 cancer.  This has left me in a very difficult place, having lost trust in doctors at the very time I need doctors the most.  It is not easy to face my fear and make a leap of faith to trust a new doctor.  Unfortunately having many health issues leaves me in need of many different types of doctors.  I have had great success with some and still find myself struggling with others.  I believe that this is a long term project, but hopefully it will get better…..sometime. 

I wish I had the answers on how to take a successful leap of faith, but I don’t.  The one thing I think could help is to set a smaller goal, perhaps a step of faith-not so large, but still moving forward.

Time Flys……

I have not posted for a while, who ever said life gets in the way of other plans was right.  I have been involved in several health issues, luckily not my cancer-at least not as of today.  Sometimes it feels like all I do is run from doctor to doctor and test to test-I finally could not attempt to coordinate this myself, so I found a new primary care doctor.  She is fabulous, I knew right away I liked her, but she has exceeded any expectations I had about a new doctor.  She is busy studying my records, talking to my specialist, calling to check on me and putting together a plan for my healthcare.  It has truly made me feel like a weight has been lifted. 

Many other things have happened since my last post.  On June 5th we celebrated my son, Robby’s 29th birthday-so far he has exceeded his life expectancy by 13 years.  Every year on his birthday I am grateful for the gift of another year with him.  Good news-I get another three months of no chemo!!!!   

My anxiety has been ok amazingly enough, stress….well that’s another story.  When I saw my new primary care doctor she asked me a lot of questions, one being about if I get depressed-I told her no, I do get overwhelmed.  And that is where I find myself most of the time right now.  My health issues are just part of my life, there is also my son, taking care of the house, coordinating some repairs, going through generations of stuff that has ended up with me and making decisions like whether or not to move.  I can’t even keep the yard watered.  But after being mad at myself for not being able to get everything done, I have decided to try to just do my best.  After all, that’s really all I can do anyway!!

 

Milestones

Yesterday, May 16, 2014, was a personal milestone for me.  You see on May 16, 2012 I had my cancer surgery and found out I have stage 4 cancer.  So, on the one year mark I told everyone that perhaps I should celebrate that date even more than my birthday.  That must sound funny, but I have a very poor prognosis with my cancer, so to me every year that I am here on May 16th feels like a gift.  Everyone seemed to think that was a great idea.  Well, yesterday I celebrated another year.  It’s a day for mixed feelings-happy for another year, but the other side is the reality of my situation.  But I celebrated my milestone alone, no one remembered.  I know people are busy with their own lives, but this is a huge part of my life.  I guess it shouldn’t be a surprise as just about everyone forgot my birthday last year.  You might think I sound like a whining spoiled child, but I live with the knowledge that time is no longer my friend and that every day truly is a gift.  With that I am making the effort to celebrate everything with my son, so it would be wonderful for my friends to share in our celebrations.  But no matter what anyone else does or doesn’t do I will continue to celebrate any and all milestones and appreciate the gift of each day.

Dreams of a Simple Life

I remember, as do most people, how simple life seems when you are a child.  Days were filled fun, fun and more fun-all carefree and simple.  As you become an adult life is less than simple, there is all the adult responsibilities-bills, work, rent, insurance and so much more.  I don’t mean to make sound like there isn’t ‘fun’ as an adult, but that simple life is missing.

When I was stuck at home with my agoraphobia I created a ‘life’ within my house.  I found ways to take care of what we needed and made sure we celebrated everything-birthdays, holidays, special days and even the seasons.  It was at times difficult, but even so I became comfortable within that ‘life’ I created.

Now I find that my life is increasingly complicated, stressful, demanding and exhausting.  If I am not off to a doctor’s appointment or physical therapy, I am paying bills, running errands, making more appointments, trying to keep the house going and ……..  There are days I am not sure I can do any of it and some days I get some or even most of it done.  I often feel a desire to hide, but at my house that is impossible.  What I do find all to often is a wish to return to the simple life I had when my agoraphobia was worse, it wasn’t quite as simple as a child’s life, but it was much more simple than my life today.  Who knew I’d ever want to go back?

Being Overwhelmed

I often compare myself to the plate spinner at the circus.  You see I have always believed that if I can run fast enough to keep all the plate spinning then everything will be OK.  But being short on energy, I find that lately I can’t keep all the plates spinning and several are crashing to the ground.  This is not easy for me to accept, I have always told myself that failure is not an option, but I am beginning to understand and even accept that it is not failure, but rather just another change.

In my past I have lived through and dealt with huge amounts of stress and being overwhelmed was just a way of life.  I never really believed that I could do it all, but I was willing to try.  I was the designated adult in my family from the time I was young, this did not change as an adult.  But what did change was the arrival of my friend anxiety, and eventually panic and finally agoraphobia.  This did make things more complicated, but I kept going, sometimes better than others and when the panic got too bad I would hide for a while or just go to bed. 

Now with all the changes in my life things are different, yet similar.  I am still responsible for everything, except for the 8 hours a day of Robby’s care, we have nurses to care for him.  This leaves again with the feeling of being overwhelmed.  I am finding it more difficult and demanding to keep up, I just don’t have the strength or energy.  This brings me back to the falling plates.  No matter how hard I try or how fast I try to run it is not enough.  At first I was just frustrated and angry, but that didn’t help, it just me more tired.  So after being disappointed with myself (old behavior) I thought I would try looking at it as objectively as I could.  The conclusion I came to is that I have to just do the best I can on any given day and that just has to be enough….

Now all that’s left is to convince myself that is acceptable and reprogram my brain that it is OK if some of the plates fall…..as long as I am not standing under them!!!!

plate spinning circus specialty act,plate spinner artist