Why is it that we define ourselves by our work or lack of?

Welcome to my blog! Please feel free to read this short bio if you are new, return readers can scroll down to new post, thanks.

My name is Victoria and I suffer from Schizoaffective Disorder (SA), which is basically Schizophrenia plus depression; this blog journals my progress from fall 2013 to now although I was diagnosed in 2008. I have experienced both the positive (hallucinations and delusions) and negative symptoms (lack of motivation, flat affect. social difficulties) of Schizophrenia and while the positive symptoms have been under control with Risperdal, since being diagnosed with Schizoaffective Disorder by UCLA in 2008, I have still suffered from the negative symptoms until recently when my psychiatrist added Latuda. Post diagnosis I received my Masters Degree in Psychology and used to work in the mental health field until stress caused me to go on permanent disability in September 2015.
I started this blog in fall 2013 which journals my personal recovery from Schizophrenia. The earliest entries chart my psychotic period 2006/2007 with much in between and my current focus is managing the negative symptoms of Schizophrenia. I welcome all feedback and enjoy meeting new people through this blog and other articles I have written. I have also written a book which is available on Amazon by me, Victoria Marie Alonso- My personal recovery from Schizophrenia, which is for loved ones or those afflicted with this disorder. This blog has been viewed almost 10,000 times and by over 50 countries! Bienvenidos a todos! Welcome to all!

Please feel free to email me to share your story or that of a loved one at:victoriamariealonso@yahoo.com

Other mental health providers or researchers are welcome to ask any questions, as well.

New Post:

Why is this I ponder?  I am an able bodied woman in her forties who can’t work due to my condition schizoaffective disorder.  People look at me and don’t understand why I don’t work but I find most people are polite and don’t get into it and I am thankful for that.  But there is always that awkward silence when being introduced, when the question comes up, what do you do?  Right now I am able to answer that I am a stay at home mom who helps her elderly parents.  I don’t mention my vast education that is unused at this point in my life, nor my former work as a therapist intern which I worked at for 4 years after earning my Master’s degree in psychology.

That seems so long ago but it was only last year.  I have learned much in the time I have been off.  I have learned to be more present for my family and friends and that I love to entertain.  Getting the house and lately the gardens in order gives me a sense of purpose and excitement for the upcoming event.  Gardening has become my new passion and the class I am taking currently helps me to do it right.  I have some days when I spend the whole day looking after the yard and my gardens and at the end of the day I am tired but satisfied to play with the earth.  Spring right now is beautiful with all the flowers and greenery surrounding us where we live in California despite the drought.

My dogs also are my constant companions at other times of the day.  They lay next to my feet and are much happier now that I don’t work.  House cleaning hasn’t been as much as a painful chore and I like the days when I get to cross off my google keep list another chore done!

I go to my AA meetings too and get inspiration to keep going without using drugs and alcohol to deal with stress although I don’t have much these days except now and then.  I read and watch my shows throughout the day and even joined a book club which is stimulating for the mind.  Right now I am reading Stephen Hawking: the unfettered mind.  In all his disabilities he kept going and really left his imprint on this world.  I am really enjoying reading about his life although the science is over my head for the most part.

So back to my original question.  Why do we feel defined by working or not?  I don’t anymore but others may not feel the same way.  The only reason now why I would try to work again is because we really need the money but at what cost would that take place if I end up in the hospital again with another hefty bill?  I am going to try to write a book like Stephen Hawking did and solve all my financial woes although right now I am actually doing ok with the finances but that is because I am still receiving disability.  I am going to write a book about fulfillment outside of working I think.  Something to do anyway with some of the free time I have left!

Some of the brief benefits are easy to notice as I have shared on here.

Have a great day everyone, I am going to start my book and see where it takes me!  If anyone has any ideas on how to get published will you let me know?  I self published through Create Space and didn’t sell very many copies.  I would like to reach more readers not just through Amazon.

Pax

Victoria

Lack of motivation is my current main symptom

 

I see my pdoc tomorrow and am thinking about what I want to talk to him about and after a conversation with one of my two sounding boards I have come to the conclusion that my main problem is that there are days when I am totally unmotivated to do even simple things like put something away or send a text.  This is one of the negative symptoms of Schizoaffective Disorder which I have written about before at length (see June 2014 for more about the negative symptoms of Schizophrenia).

Other days I am unstoppable like today.  I deep cleaned part of my house and was very motivated to keep going until 6pm when my husband got home.  It’s weird because sometimes I am more motivated when my family is here with me especially if they are working on projects or other days like today I was motivated by myself with only my son stopping by on his way to work.  There is no rhyme or reason to my moods to get things done.  It is pretty awesome though that I exercise 6 out of 7 days a week very regularly, walking for many miles when the weather is nice or jumping on my mini trampoline or gardening when the mood strikes me which lately has been more often than not.

The one thing that my pdoc highly recommended with me being off work permanently is to keep my mind engaged and he suggested learning Spanish.  Well tomorrow I get to tell him that I am not only learning Spanish (I actually already know some) but that I am taking a gardening class which is mainly in Spanish.  The teacher is a white girl like me and it is pretty cool that she teaches the class to us in Spanish.  The class is predominately Hispanic so I get to hear her proper grammar and a lot of slang.  I’d say my pdoc will be pleased as I am learning a lot about gardening terms in Spanish.

The class itself is pretty interesting and I am applying the knowledge I am learning to my own personal gardens which are coming along.  I have weeded, put down weed block, compost and will add mulch around my plants as soon as I buy some which should be tomorrow hopefully.  It is a great hobby I highly recommend.  That and walking are my main sources of entertainment and my show I am obsessed with Person of Interest which I am watching for the second time but slower so it will last.

I spend most of my days alone with my dogs and a mix of going to either an AA meeting, a walk with a friend/dogs or to coffee with someone.  Of course I go to the store but some days like today I just stay home and work on the house.  It is amazing how much dirt one can find when one looks for it.  I also enjoy taking a drive along the coast with my husband or alone.  Nights are spent reading mainly and blogging or writing in my journal.

And yet I wonder if there is more to life than this?  I still wonder if I should work again but if I did it would be gardening or working at the library or something chill like that.

I am currently awaiting my hearing to get on permanent disability or rather should say I am waiting for them to schedule it which may take a year!  I have till August of this year till my state disability benefits run out so that gives me time to figure out what I need to do.  I am able to pay off my debt right now a little at a time and finally finished paying off the last hospital stay.  I think that is what I will tell the people at the hearing that I can’t work because I will just end up in the hospital again if I work as history has repeated.

I have been clean and sober for seventeen months which is how long it has been since my last hospital stay.  I still use nicotine regularly via lozenges which really helps with the stress, ha what stress?  Yes I am still stressed out even though I am not working just getting through each day but it is minimal compared to when I work.  Sometimes I stress about a difficult day meeting various social engagements which are rare because I choose it that way for the most part.  I have family over for dinner sometimes and enjoy that very much.

Well that is about all that is going on with me.  Feel free to write in anytime as I answer all my legit email at:. victoriamariealonso@yahoo.com

Pax

Victoria

 

 

Delusional still? a conversation

 

Having SA is very hard.  Even on medication the voices stop but the delusions remain although to a much lesser degree.  I go about my days and constantly pray for God’s will for my life and naive as I am I expect God to guide me and some days it appears he does and others I feel without assistance.  Are these my delusions to believe that God will make his will known to me still?

When I was actively psychotic I had a direct line to God or so I thought.  He would give me messages mainly for people to change their lives and do the right thing and there were times when I was dead on as my spiritual advisor can attest to but there were other times when none of it came to be in fact things even turned out quite the opposite from what I thought was going to happen.

I sought help when my life became so dysfunctional that I was falling apart and was becoming unable to take care of daily tasks because I was receiving so many messages.  Ah, the quiet that came after my admittance to the hospital was great although it still took a while for the messages to stop coming.

One dear priest who I sent many messages to even when I was at UCLA has since deceased and I believe he is in heaven now watching over me in the care of God.  Dear Fr. Melito what do you say now?  Were you right to ignore me this child of God or were you supposed to become my spiritual advisor the way God directed you through me?  I will never know now that he is gone.  May his soul rest in peace, Amen.

But back to the delusions going away.  I guess they really haven’t but my life has become more manageable even boring to some extent.  I fulfill my duties as wife, mother and daughter and friend to the best of my ability but somehow I still feel I am a part of a greater plan that only God knows which he will reveal to me if not now then when I die.  So although some may classify me as still being delusional that I am very special, I can go about my life and find meaning in every day things like walking, gardening and reading and helping others.

I take my medication faithfully every day, the other day I think I missed my morning antipsychotic and I had a really bad day but I am not sure because I never miss a day and am not willing to stop taking it to find out if the messages will return.

Please take the poll below if you are so inclined.  I have to say yes due to the aforementioned mentality that still is a part of who I am.  I think many of us with this disorder do still suffer from delusions, for some reason the medicine stops the voices and hallucinations but the delusions seem to remain but to a lesser degree, no I take that back to a less interfering with daily life degree.

Pax

Victoria

Some of the ways I stay sane

 

Well the days are strange these days.  Some days I get a lot done and others I kind of bumble around not accomplishing much.  But that’s ok because I can’t have perfect days every day, that would be unrealistic.

These days I am very grounded in the reality of my situation.  I can’t work, not even part time.  My career is toast and although I am sad about that because I actually do enjoy working it is ok because my life is very full with family, friends and all my readers some of whom have become good friends.

I take great pride in the upkeep of my house and actually enjoy days when I get to stay home and make it shine.  I have also joined a book club for mental stimulation.  Right now we are reading Thoreau which was my pick so I am in heaven; I just love his writing.  I go to Church every week and practice my faith every day praying for all my loved ones and right now am praying for all who read this blog for relief such as I have found from this dastard disorder which does still rob my joy at times when I let it which sometimes is more often than I like to admit.

But I have hope, hope that while I live and breathe I can enjoy life and look forward to life eternal when I will no longer suffer from SA.  If I can give just one person hope, that is enough.  Coming to a place of acceptance is the greatest accomplishment and I hope that all of you can find the same.  Your life is not over because you have this disorder, different yes, but not over.

The best thing I have done is to find a psychiatrist who I trust with everything to get the medication cocktail just right and also finding a therapist who I trust as well to work through some of the facets of this disorder that I don’t discuss with my pdoc like how to live life with this disorder.  I no longer see this therapist but will forever hold onto her comforting sessions when I got to be myself and have a good sounding board to check in my sometimes still strange ideas and hear solutions which I couldn’t think of by myself.  Exercise is also key to my well being.  I walk sometimes 7 miles a day and enjoy this cheap hobby very much which brings me great relief of the depression that I still face at times.  Eating well is also vital to my well being.  I probably eat healthier now than ever before and I have lost 30 pounds doing so with the help of Weight Watchers to learn how to eat smart and be more active.

These are the main ways I stay sane.  Like I said not every day is perfect but the days that are are awesome.

Readers, write in and share some of your secrets for dealing with this disorder!

Pax

Victoria

 

Breakthroughs and finding purpose in life

Every now and then I have breakthrough and this weekend I had a few.  There are so many ups and downs with this complex disorder as I have written recently (check out recent blog below- this disease can be brutal a few weeks ago).  But there are some good moments too and when one of these occur it is worth noting.

Yesterday, I went to a funeral for one of my husband’s coworkers.  I did not know him well but my husband worked with him for many years.  I didn’t really want to go but knew it was important to support my husband of 24 years who has stood by me and my disorder although he doesn’t understand any of it, only that he will support me as best as he is able.  So yesterday was my turn to support him and I did.  Not only did I go dressed appropriately for a funeral but I made myself available to his needs.  Toward the end of the funeral he put his arm around me and pulled me close.  He was hurting and although he has rare displays of affection, I think he was overcome with emotion and reached out to me and I allowed it, leaning into his embrace and remained that way till the end of the service.

Often I lack the ability to experience emotions due to the negative symptoms of this disorder.  I wasn’t emotional yesterday but my husband was and I was there for him which is HUGE!  My daughter pointed out after I explained what had happened that I always provide comfort for him, always she repeated.  This observation put me on top of the world.  There is hope for me.

On another note, I have been very busy lately taking care of my parents.  This gives me great pleasure to be a blessing to them.  And the fact that they appreciate it wholeheartedly makes me even more happy.  I gave them so much grief as a teenager (a premonition of mental disorder to come perhaps) that I find myself these days really missing them the days they don’t require my help.  Today I took them to Church and they treated me to an amazing breakfast!  So even though I am not working now, I get to help them and my sixteen year old son and know that it would be much harder my days without such great purposes in my life.

We all need a reason to live.  And today I have several reasons, my husband, 3 children, my elderly parents and a few good friends.  I also have people who support me too when I am having a hard time and they know who they are!

Through these observations this weekend and past months, I find much hope and encouragement to fight those feelings of not wanting to be alive and that just feels right.  Write to me if you are having a hard time finding purpose in your life if you are open to sharing and are willing to look at difficulties in a new light.  Each time I conquer one of the many facets of this disorder I want to scream it from the rooftops, there is hope!

Pax

Victoria

victoriamariealonso@yahoo.com

Optimal pdoc talks

The year was 2008, January 3rd, and when I finally went into UCLA psych hospital I was ready to have professionals diagnose me and help me to alleviate my psychotic symptoms and try to return to a ‘normal” life.  I had suffered for a year and a half with bizarre experiences, some of which were tragic, expensive and downright confusing.

I had done research online prior to going to the psych ward and from what I could find realized I had Schizophrenia.  I went to the psych ward equipped with my list of symptoms fully delusional at the same time as I was aware of what I suffered from.  The lead psychiatrist initially told me that it was impossible for me to have schizophrenia because I was the wrong age and other factors so I became willing to allow them to analyze me and tell me what I had because I knew I had something that was causing my life to unravel.

After 3 days of interviews and observations of my bizarre behavior with the other patients in the ward, they confirmed my suspicions, I had Schizophrenia and although I had already begun Abilify an anti-psychotic drug upon entering the hospital, it was a relief that I finally had my diagnosis.

After my 7 day stay in the hospital, I was released to my husband and parents and was set up with a psychiatrist an hour away from my home on the Central Coast who fine-tuned my diagnosis as Schizoaffective Disorder.  Little did I know that I would be seeing the same psychiatrist for the next 8 years and come to fully trust in his guidance as well as receive compassionate care.  I wish everyone had a psychiatrist like mine because he has helped me so much, it is hard to put into words.

I don’t wish to focus on the negative experiences I had at UCLA but I must reveal that the lead doctor of the team of doctors who were analyzing me was not someone I wish to see for one day let alone 8 years.  It was like night and day after my stay at UCLA to entrust my care to my now psychiatrist.  The UCLA pdoc was judgmental and condescending and did not treat me or her other patients with respect.

I wish to share with my readers a few tips on how to get the most out of each and every psychiatrist appointment which I have done for the past 8 years.  I must thank my mother who raised me to do certain things prior to my appointments. Thanks mom!

Tracking symptoms is vital and a simple journal or online document can be used to do so, especially in the beginning of treatment this is of the most utmost importance.  I would notice certain behaviors and thoughts that I knew were not normal and jot them down.  This information I would bring to my psychiatrist who would then adjust, stop or start  new medication.  This information would also include side effects of the medication along with observations of my immediate family whether or not the medication was noticeably working.

One facet of my disorder was that I would write prolifically about messages from God to various people and then I would have to deliver the messages to the recipient at a certain time.  Things did not always work out so well so my dislike of writing after the delusions began to increase after beginning anti-psychotic medicine.  Still to this day I do not enjoy writing like I once did but obviously still do write when I am inspired.

So I would write in bullet point style and bring this information to my psychiatrist.  Here is an example of what it would look like:

  • delusions were lessened after starting Abilify
  • have increased restlessness on Abilify
  • stopped hearing voices except for one day, but definitely lessening
  • still depressed most days but know it will take a while for meds to kick in
  • felt passively suicidal for two days but forced myself to get out of bed and to do something I enjoy

It is hard to remember from 8 years ago what exactly was going on with me and my disorder but that is a good example of what my list might look like.  From the beginning I trusted my now psychiatrist of 8 years, so it was easy to share with him exactly what was going on.  This is one of the reasons why I am doing so well because of this trust I have with him although I must share with you all that my psychiatrist now has told me that I have a rare form of this disorder in that I have much insight into my disorder, which helps me to do well.  Most people with Schizophrenia do not possess this ability but I think they can still benefit from some of these suggestions.

The main one is to be totally honest with your provider.  Of course it helps if you trust him or her and if you don’t it is worth trying a different one because if you don’t feel comfortable sharing your most private thoughts, they really can’t help you.  It takes a lot of fine-tuning to find the right cocktail of medicine and if you have a relapse of sorts, it can be like starting over.

Today I do not bring a written list but I mentally jot down my observations, along with questions I have for my psychiatrist.  I have an appointment Jan 8, and already have an idea of what I want to discuss with him.  Basically I will share that I am doing good, for the most part am not delusional, still struggle with being motivated especially in the mornings and that the facial ticks my husband notices have lessened with the use of Cogentin so can it be increased to a higher dosage to help all the time?

I will also share with him my progress with pursuing brain activities like joining a book club and reading a 400 page non fiction book.  He wants me to engage in things that challenge my mind now that I am not working anymore.  Lastly I will ask him to include refills on my Latuda so I don’t have to wait for the pharmacy to contact him every time.

It gets easier with time but being mentally prepared is key to getting the correct dosage of meds and maximum results of good mental health.

So in a nutshell this is what has helped me to maximize my pdoc appoints.

  1. Track symptoms, jot them down if it helps, include side effects of the medications
  2. Be honest about everything (you can’t be helped if you hold back vital information)
  3. Listen to what your pdoc has to say and write down anything that is important to remember
  4. Keep all appointments even if you are doing well.  He or she needs to know what is working too.
  5. Find a routine that works for you to remember to take your medications every single day!  If you only remember to take your meds a few days out of the week, your report to your pdoc will be inaccurate.
  6.  If any of your symptoms are life threatening (ie. suicidal or homicidal) contact your pdoc immediately, do not wait until your next appointment, you need to be seen right away!

Hope some of this is helpful!  Thank you to the Schizophrenia researchers and developers for suggesting I write about this topic on my blog!

Pax

Victoria

 

 

Upcoming blog

Hey, Victoria here.  Hope everyone is doing well.  I am ok for today but yesterday was a different story for a different day.  Today I was asked by Schizophrenia researchers to write a blog about how to get the most out of the patient/psychiatrist relationship.  So I am working on it and will hopefully post soon.

Happy New Year 2016 to all!

Pax

Victoria