Some of the ways I stay sane

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 over 8000 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:

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

This disorder can be brutal

A year ago I was hospitalized for the third time, when the stress of my full time work in the mental health field became too much for me and I became passively suicidal (didn’t want to live but had no active plan to commit suicide).  I just finished paying off my share for it and felt it was time to reflect on this past year.

Several months went by and every time I thought to return to work I got incredibly anxious so I quit my job and went on disability for the second time.  Then my work offered me part time work which I happily accepted.  It was obvious that I couldn’t make it full time but maybe part time would be better I thought.  I gave it my all but the stress from being at a job even three days a week was too much so I quit and am now applying for permanent disability.

I don’t even feel bad that I have a Master’s Degree in Psychology and can’t use it.  I don’t feel bad except when I have no money although I just recently had all my school debt forgiven ($100,000) due to being disabled.  I don’t feel bad because not working feels so right.  My biggest stress these days is what I am going to cook for dinner for the family.  I also get to spend a lot of time with my elderly parents so that is cool.  When I worked I rarely saw them but now I see them every day.  So there are benefits to not working.

But this disease makes my life so hard that I don’t wish it on anyone.  My memory is affected greatly, I have a hard time in social situations, I make poor decisions despite trying my hardest to do the right thing and I still have some delusions which just aren’t very fun.  I work very hard to combat the negative symptoms of this disorder, which include lack of motivation, constant fear at times, and battling depression and suicidal thoughts.  If it wasn’t for my parents and children I would consider this more of an option so I thank God for my protective factors.

I do not mean to be a downer but I think it is important to state these negative factors in having Schizoaffective Disorder.  If all I write about is how well I am doing, people may be jealous and not have a reality check if they too suffer.

I fight every day to do better and some days I win but then I go to bed and the next day is a new battle and once again I fight for my sanity.  The days at times seem endless and tedious.  For goodness sake I can’t even work to help support my family.  Thank God for disability!!!

Soon I will list my goals for 2016.  They are less lofty than previous years because I want to be realistic.  I do enjoy life some days but some days are really hard.

To all my readers who have been following me for a while I just want to thank you for your friendship.  This blog is a huge part of my life as it is the only place where I can write about what is really going on and when people email me or make comments it makes my life a little bit better when I can help others who are afflicted or who have loved ones with this disorder.  I wish I could do more but this is who I am and I have realized my limitations having this disorder and they are what they are. Nothing less nothing more.   It is what it is although I fight every day and although there are days I feel like I have lost, all in all I feel like i am doing ok and that must be enough.

Pax

Victoria

 

 

 

 

 

 

Merry Christmas 2015 and Happy New Year

Having this disorder can be especially challenging for several reasons.

First on my list is the social gatherings.  I do not do as well in groups and feel awkward when I try to jump in the conversation.  To counter this I am trying to focus on one or two (at most) people to talk to during festivities.  So often the holidays go so fast and I sometimes feel left out.  This year will be especially hard due to the fact that I am trying to go on permanent disability so I don’t have work to talk about.

To catch some of you up I was working in the mental health field until it became clear that working caused too much stress which ended in my last hospital stay last year at this time.  I finally figured out that I can’t work.  Hospitalizations are expensive even with insurance.  I have also had all my student loans (100,00$) forgiven due to my disability so that is pretty cool don’t you think?

The other hard part of holidays is all the food.  Because of the medication I am on, I cannot eat like regular people.  I joined Weight Watchers April 2015 and have lost 30 pounds through making good food choices and exercising a lot.  I walk from 3 to 10 miles a day depending on my mood and the weather although I go to the gym sometimes when it is too cold outside.  I love food!  One hypnotist I saw last year explained to me that it isn’t just the medication which causes weight gain but that the medicine actually causes one to crave sugar and bad carbs.  Weight watchers helps me to find food which is still tasty with less calories, sugar and saturated fat.  I hope to be at goal in April 2016 so that is only a year of hard work even though I still slip up.  I am hoping for a better holiday season than ever before but it is hard with all the temptations around me at the holidays.

My daughter is here for the holidays and we walk every day weather permitting and it is fabulous to have her around for two weeks as she is such a support for me and my disorder.  I do have a couple of good friends who I use for support when she is away but it isn’t the same so I am really enjoying her being around to help motivate me.

Speaking of motivation my goals for the New Year are to wake up every day and after coffee and a light breakfast to walk or go to the gym.  I really feel like I have wasted the day when I stay in my jammies all morning.  Part of the problem is that the medication leaves me drowsy in the mornings but I have been able to get up and get out with my daughter this past week and a half so I am hoping I will keep it up.

Other goals are to cook more healthy recipes, work on my photo albums, find some new music I like, continue to help my parents in whatever way they need it and to finally get to my gardens this spring.  Without goals I have nothing to reach for, which when I feel like I am not productive all I have to do is look outside or in my fridge and I will feel better about myself not working right now.

What are some of your goals this new year?  Share in the comments or send me an email at victoriamariealonso@yahoo.com

Hoping everyone has good holidays this year and Happy New Year!!!

Pax

Victoria

 

 

 

 

 

 

 

 

Trying to get in the holiday spirit

My house is half decorated, no gifts have been bought, and trying to get in the mood to write Christmas cards.  I  could use the excuse that I am putting it off because of my disorder but I think that would be oversimplifying the real reason is because my daughter is usually the one who helps me the most and without her around I am just not in the mood.

The good news is that she comes home for two weeks next week and I know I will be more in the mood.  I miss her so much, her laugh, her determination to get things done, our long walks, our long talks.  We text every day and talk once a week but it just isn’t the same as having her here.

I try not to be selfish as she is fulfilling her dreams being in Colorado.  She has a new boyfriend who I am sure she will share all about him when she is here and school is going really well.  I am so proud of her but the truth is that I don’t do well with her being gone although I will not tell her that.  I don’t believe in guilting her to come home as tempting as that may be.  I tell her I miss her and that I am doing good most days but the truth is that having her around really helps my condition.  I don’t share with too many people how much I suffer still from this disorder.

I am not having any strange thoughts is the good news.  Not working is the best thing for me although the days sort of run together without having any real direction which work did for me.  I help my parents a lot still and have my sixteen year old son to take care of and he is having some mental health problems this year which is interfering with his schooling.  So life has meaning but I am just so sad that my daughter lives so far away!  She is my main support and it just isn’t the same on the phone…

Anyway sorry to be a downer but this is where I am right now.  Hope all my readers have a great Christmas and a happy new year!

Pax

Victoria