Dedication today for Anne

Dear readers,

I hope todays’s post finds you all well for I am not well which I offer up my cowardice and pain for a dear friend who passed last week.  Words cannot describe this excellent human being who I pray is now in heaven gardening with the angels!

She was fiesty but used it to help others.

She was good and always treated others with respect if it was due.

I find it very hard to put into words why I was so impressed with this rare specimen who no longer is here in her earthly body but oh how I miss her so!

I dedicate today’s post to Anne, a dear soul who fought with God and I am sure she won.

I will now share my cowardice and suffering as of recent and I offer it up for her soul which may still be in purgatory and is in need of my prayers and offerings of my current suffering coming off of Clozapine.

I am currently taking 25 mg every other night and it was the second night that I went without.  The first night I couldn’t sleep at all and the second night was the same.  I perspired in every crevice and itched so terribly I just wanted to be dead rather than spend another minute in bed with sleep at an arm length’s away…

For some Clozapine is a cure.  But God has other plans for this person with Schizoaffective Disorder.  It caused pain in all my joints especially my hands upon wakening were like stretching out a roll of toothpaste that is long past it’s due.

These are called extrapyrmadial symptoms of which I suffered much.  It also caused heavy sedation.  After taking my prescribed dosage, I would pass into sleepy land quickly and sleep 11 to 12 hours every night.  I was on this medicine since October last year trying to see if I would adjust  because I so wanted to be cured.

But it was not so so here I sit early in the am, with another sleepless night under my belt, my eyes aching, my side throbbing, hot and cold in the same minute.  Oh I do not want to complain to my God.  So I will stop now and ask him for His will be done in all areas of my life.

Today will be a chill day, getting ready some flowers for Anne’s memorial tomorrow which she did not want…  But the best of us do not desire that I have found.  I do need to go to the pharmacy though to fill a prescription for some more Latuda.  I am on the max psychotic dosage 160 and don’t have enough for tomorrow.  I don’t like to drive when I haven’t slept and oh yeah the extreme anxiety that hits when it may also causes me much suffering which I also lift up for Anne…

Have a good day readers, I shall try to make the most of it….

As usual Pax

Victoria

Quick update

Dear readers,

I haven’t posted since December 2017, I don’t know where to start really to describe what I am feeling right now…

Over medicated, easily stressed out, gained some weight 😦 and overall not feeling well mentally even to the point of being suicidal with a plan which ended up with another hospital stay.

Monday I see my pdoc and I am going to discuss with him giving up on the Clozapine and going back on the risperdal.  At first I was doing great on it but my lack of motivation and weight gain is what is really going on.

I pray God’s will in all of this… and that has to be enough for now…

I also pray for all who read this, to be in God’s will.

Good night readers, praying my next post will be more upbeat.  I am a fighter and I will not give up!

Pax

Victoria

hard to describe but I will do my best to put it into words…

Hello to all my readers new and old!

2 days now on the medicine Nivigil and 6 weeks on Clozapine which is amazing.  My pdoc prescribed me Nivigil to help with the tiredness caused by Clozapine.  It works amazingly!  For two days now I have had motivation to do things I have put off for some of it off for many years.

Every corner of my humble home is under scrutiny right now.  Just sayin…

I don’t know if this makes sense to anyone else, but the days of darkness are I feel behind me with this new medication regime.  My good friend Bethany Yeiser of CureSZ shared her experience with me of the benefits of Clozapine   And I took it to my pdoc right away almost and am just so grateful she shared with me.

So I want to share now with everyone who reads this who has still struggled with positive and negative symptoms of Schizophrenia or Schizoaffective Disorder.  You do not have to suffer needlessly.  Ask your psychiatrist about Clozapine.  I just wish I knew about it sooner but it is what it is and I am grateful now more than ever to have my life back.  It might help you too!

My whole outlook has changed.  I am enjoying life in a new way and am so grateful to even be alive.  This from someone who was suicidal just a few months ago, no plan mind you but the thoughts were there and now they are gone.  I am more social and am always trying to find ways to give back what was so freely given to me.  lol.  I am also wonderfully free of all delusions of grandeur!  How I love this because they were a great burden.

I would like to do another poll so please take a minute and chime in on Clozapine.

Thanks ahead if you answer the poll!

Merry Christmas and Happy New Year

If you would like to share your story or have any questions feel free to comment on this or email me at victoriaalonso@yahoo.com

Pax

Victoria

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

 

 

Stopping Latuda

I saw my psychiatrist today and he is allowing me to try to stop the Latuda and see if I really need to be on 2 antipsychotics or not.

After my relapse he put me on 80 mg to stop some delusional thinking that had resurfaced after my traumatic experience at work.  It did the trick but I am alway wanting to be on the least medicine possible so I think I need to try it without it.  I never do anything with my medicine without my psychiatrist, though.  I want him to guide everything although it was my suggestion.  He agreed to try because I am doing so well right now.

It is a very expensive medication and my with my insurance it is still around a hundred dollars.  I figure I better be sure I really need it at that steep price.

There are no side effects I have noticed on this medication.  It handled the delusions but I still need to be on Risperdal to counter some of the negative symptoms of Schizophrenia.

Anway, time will tell.  He has cut me down to 40mg for a month and after that I can stop.

Pax,

Victoria

Risperdal

After trying Abilify, which caused major side effects, I went off medication for a while on my doctor’s orders.  Because I was so high functioning, we had to make sure I really had a mental disorder.    Now I am not a doctor but from what I have read when one has Schizophrenia the sooner you start taking the medicine the sooner the psychosis will stop and your brain will begin to recover.  My theory is that when I started to take the Abilify the psychosis ended and the healing began ending the defiinite psychotic period of my life.  After a couple of months being off the medication, I started to really deteriorate. Not psychosis, I believe, but more delusional believing everything was connected to me (even the gas prices) and I began to be passively suicidal.

At that point I knew I needed medication.  At my reques,t my psychiatrist hospitalized me and began me on Risperdal, I forget the dosage.  The next day I felt better and the symptoms started to fade pretty quick.  But my appetite went crazy, which I had lost entirely prior to the hospitalization.  I remember eating 2 peanut butter and jelly sandwhiches and still being hungry.  Over the next 6 months my appetite did not cease and I gained 50 pounds which I kept on until recently.

Other side effects are that I have a hard time feeling emotion.  Crying is hard (before I cried all the time) and laughing is rare.  This loss of emotions has been very hard for a very emotional person.  I have been told I still have a good personality but I feel like I am not like I was before Risperdal.  I continue to be on it to this day and although I am very grateful it keeps symptoms at bay, I wouldn’t mind if I had more emotions.  I really don’t know how to conquer this side effect but I do try to laugh and cry and feel anger.  I guess it is better this way- to not be psychotic….

I have not experienced many of the other symptoms so for the most part this medication works really well.

Victoria