Hope

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:

I used to believe I was the most special person to ever live…

Well the proof is in the pudding as they say.  I can’t even work and my proud accomplishments are mainly having raised three beautiful children, have been married 24 years to the same man and that I take really good care of my parents who are elderly and myself through proper diet, exercise and keeping my house in order.  Nothing that others haven’t also achieved, certainly not much to think one is that special.

I have lingering thoughts that one day I will write a great book that will help many people but again that has been done.  So why do I still even for one second believe this could be possible???

I am no longer delusional nor do I receive messages from heaven like I did when I was psychotic. I used to miss it but now I am used to the quiet in my life and I like it this way.

So I take my medicine dutifully in the morning and at night and just try to get through each day, keeping up my obligations and trying to have a little bit of fun in the process.

But some days are still really hard and to be honest I hate those days.  But I have learned that the next day is usually brighter and better.  I know that I get stronger when I meet my obstacles head on but to be honest there are still days when I sleep in really late and sit in my computer chair and stare only getting up to feed myself and use the latrine.

But those days are fewer and farther in between.  I am learning to prep the night before and write out my goals on google keep and my phone and to not just get stuck at my computer mindlessly surfing the web or watching my favorite show.

So tomorrow is Sunday and I don’t work on Sundays due to religious beliefs to respect the Sabbath.  I actually have a fun filled day ahead of me so I am off to bed even though it is a little later than I should be getting to bed but I just really wanted to get these thoughts out in the universe whether anyone reads them or not.

Here’s to more good days than bad this next week.  I hope everyone is doing well and keeping the hope that sometimes things can only get better one day at a time!

Pax

Victoria

Don’t focus on the negative like I did today!

Living with this disorder is challenging to say the least!  i actually had 6 out of 7 days where I met all my goals, eating right, exercising a lot, taking me time, took care of the dogs etc…  It was a good week but sad to say that all I can focus on is today when I did not meet all my goals.  I must stop doing this to myself.  I must not be so hard on myself for having one day of not doing much!  It is just that the days I am productive I don’t feel disordered and the days like today when I am lazy and unproductive I feel like I have this disability.  Does this make sense to anyone?

As usual, I have a new obsession- gardening.  I see a patch of weeds when I am walking and all I want to do is stop and help the neighborhood be weed free.  That’s pretty funny I think.  Tomorrow I am going over to my oldest son’s condo and guess what I am doing  Yep, I am pulling weeds!  I literally can’t wait!  It feels good to finally have a fun, relaxing, and rewarding hobby!

It’s late so I am off to bed but hope that someone who reads this gets past my mistake of looking at that one bad day instead of the many good ones.

Pax

Victoria

 

 

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

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