Wednesday, August 08, 2012

Holding on....

Hold on, to me as we go


As we roll down this unfamiliar road

And although this wave is stringing us along

Just know you’re not alone

Cause I’m going to make this place your home



Settle down, it'll all be clear

Don't pay no mind to the demons

They fill you with fear

The trouble it might drag you down

If you get lost, you can always be found



Just know you’re not alone

Cause I’m going to make this place your home



Settle down, it'll all be clear

Don't pay no mind to the demons

They fill you with fear

The trouble it might drag you down

If you get lost, you can always be found



Just know you’re not alone

Cause I’m going to make this place your home
-"Home" by Philip Phillips
They played this song on a promo for the USA Gymnastics team that's been shown a lot during the Olympics. I like the song, and it makes me feel safer and calmer to hear it. I also have liked watching the Olympics, because in some ways it can be inspiring, and I need some inspiration right now.

I don't know where I'd be today without you readers. You really made me smile and feel better when I read all the comments on my last post, and I wanted you to know that I truly appreciate all of them. I haven't been able to keep up with other blogs lately; daily functioning is hard at this time, but I do care about you all and appreciate your blogs too. A big welcome to the new readers here!

It's been a rough time lately. Since my last post, I had some successes, such as doing all my tons, and tons of laundry at the laundromat on Saturday in one big, five-hour marathon of laundry. It was quite the task, with sweat pouring off me and the air conditioning not working well in the laundromat, when it was probably 98 degrees outside, and about 115 in there. But, I got it done! And that is what counts.

The next day I got all the laundry put away. Yes, this took a whole other long time period because I had to sort through old clothes and pick out things that are no good or that I don't like enough to wear anymore, so I could make room to actually put my stuff away. See I never put my laundry away. I just leave it in baskets, and then the baskets spread all around my bed room, with clothes spilling out so you can't see the floor anymore. I had broken glass on that floor before I cleaned, and found that out by stepping on the glass. But now it's clean, and now the clothes are put away. I bought a plastic set of extra drawers and a hamper thing at Walmart - pink, because my bedroom is pink and green and yellow. So that was done. And that was a relief. I then gave the clothes I didn't want (or that didn't fit) to my neighbor, Mary, who is a nice woman who has led a difficult life, and doesn't have much. I asked her what she wanted and she wanted most all of it, and said that it was like Christmas Day for her, so that made me feel glad to give the clothes away. I have difficulty parting with my belongings. It's because of all the times my things have been trashed when I was in a hospital somewhere or had to move and had nowhere to go. So I like to keep my things now. But I'm glad I gave those clothes to Mary.

On the Auditory Hallucination Front Lines: Life sucks here right now. I just today caught myself saying out loud that I'd kill myself if it doesn't get better. I have no desire to die, and I'm definitely not going to harm myself, but I really need some relief, and soon. I am hearing the word "Jew" approximately 100 times a day or more and hearing "die" just as often, along with things like a woman on the phone at work telling me to speak German, because she was a Nazi (in my delusional mind). But I keep going, smile, do my job, talk to people, try to help them as is my job, and I get to the doctor and the therapist, and I did the laundry and the apartment is clean. So my new doctor said I'm functioning, and she thinks (not knowing me very well) that I'm going to be fine. And she's seeing me every week right now. She talked yesterday about putting me on one of the first generation antipsychotics, much to my horror. I do not want to be drooling and doing the Thorazine shuffle around campus when school starts back up in a few weeks, nor do I wish to have Tardive Dyskenisia for life! So those drugs scare the bejezus out of me. But she is of the opinion that this would be the only next step to try.

I'm so tired of all of this. I'm tired of trying to explain it to no avail, because NOBODY ever understands what I am talking about except the people who read my blog. I am tired of trying to get help and finding out that there is probably no solution other than one I don't want. I am tired of trying to be hopeful and happy and doing so while I'm hearing people say, "You're dead, Jew" or "Die, Anne", going back to my delusion of being Anne Frank which I was supposed to be over by now.

Apparently my new doctor thinks that if you try new antipsychotics (of which I'm on two at the highest dosages), and they don't work, then you should add an old one. But this scares me.  The old ones can have lifelong, heinous side effects. I'm not too interested in drooling now. Maybe it didn't matter in the hospital seven years ago when they gave me Thorazine and Prolixin, but I don't much want to drool or shuffle right now. I'm in college, and I work, and I want to just freakin' function! Why is that too much to ask?

There are no easy answers. I am hoping my increased dosage of Latuda starts working by next week when I see the doctor again. I am just holding on. Thanks for being there.

One thing I did to help myself (and this was sort of my therapist's idea) was to make a book of simple instructions on things I should do when I get into the "negative" part of psychosis which is much like depression in that you get apathetic and have avolition. I made a scrapbook with cut out words and all it says is a simple instruction on each page. Page one says "get up, get up", and then another page says, "do a load of laundry", and "turn on music" is another one, "take shower" another one. It took two nights to make it and I'm glad I did it and hope it helps me keep my apartment clean.

8 comments:

Kate Kiernan said...

One thought: do you think it is possible that you are being overmedicated thus actually decreasing the effectiveness of the drugs to treat your symptoms? I say this because I have been on the highest dose of Abilify or close to for a couple of years until I asked my psychiatrist if I could begin to lower my medications. He said yes and actually told me to halve my dose of it each day from 60 mg to 30 mg. In the several weeks that I've done this most of my anxiety problems have gone away and my voices are much less active and I'm feeling fairly good despite some potentially stressful situations. Biochemistry is such a subtle thing; it's possible that high doses are good for the short term but lower doses might be better for the long term. I wish the scientists knew more about how exactly the drugs work because too often we are fumbling blindly. Hang in there Jen! As always I wish for you healing and happiness!

Karen May Sorensen said...

Hi Jen,

My best friend Rocki went into the hospital (she's schizophrenic) after a very stressful event - a good friend committed suicide. Suddenly the antipsychotics that she had been on for fifteen years (yes, she had been out of the hospital for that long) stopped working. They kept trying her on different meds, but the only one that worked was Clozaril. I remember when Clozaril came out in the 1990's, they thought it was a wonder drug for schizophrenics but then there was that tiny annoyance of frequent blood tests for a rare side effect concerning white blood cells. Rocki gets a blood test once a month (when the drug first came out they tested once a week) and she won't let her doctor change her to the new antipsychotic drugs on the market because Clozaril has helped her so much. Oh and her dose is very low, theraputic level is 400mg and she takes 50 mg because she's very sensitive to the drug and side effects. At such a low dose she still does hear voices but she is able to ignore them and they don't cause her much stress.

Good Luck Jen!

Borderline Lil said...

Stick to your guns with the meds Jen, I'm with you about the old a-ps and their side effects. You're so brave and self aware and I'm so proud of you. Since I got out of hospital I've been surrounded by baskets and bags of clothes and it's so damn depressing. It must feel awesome to have everything cleared away.

FrankandMary said...

Latuda works for me pretty well, considering what I was like before it. But, I still deal with some wicked crap. I've chosen not to up or change my meds, but I know plenty of people who think I'm wrong about that...only thing is, I have to live this life, they do not. And some of the "old" meds had adverse effects I cannot abide by. I try to analyze all the therapeutic possibilities, but much of it is still a crap shoot.

persephonesheart said...

Perhaps letting them read your blog might be a good way to foster a working relationship and so they better understand your point of view. I know for me trying to say how I feel goes all out of understanding for most peeps. If I write it down it usually helps somewhat. Just a though is all.

Kelly said...

Hi :) Love, love, love your blog. Helped me to understand myself more and you sooo much more. Thanks for sharing your thoughts and experience. I have a friend who told me that there is strong evidence that if you tell yourself, "My medicine works! My medicine is the best thing in the world! My medicine clears away my symptoms!!" your mind will start to believe it and make it a possible reality. Believe in medicine. Maybe scrap a page or two about how much you love medicine and how helpful it is. I wouldn't try the older medicine either. Scary, scary side effects. And it's like, the doctors don't really care. They just prescribe it and expect you to deal with all of the side effects, like it's a sugar pill. Try to have better thoughts about medicine and work on buiding your faith that it will work. Also, try Invega or Saphris. They are relatively new and I've had success with both. There are a few schizoaffective FB groups and I wish you would join and share your thoughts daily. Your thoughts feel like home today. Also, love the song you posted and all the lyrics you post. Thanks again soooo much for sharing your journey with the world and using your experience to create meaningful words and poetry. Also, LOVE having a clean house! Enjoy it while it lasts ;) Then do it again!

brittanyqt said...

hi, jen. is there a way i can contact you? new reader. my 24 year old brother was just diagnosed with schizophrenia. i wanted to talk to you. thanks..
brittany

Jen Daisybee said...

Hi Brittany,
You can email me at jen.evolving@gmail.com.

Thanks and good luck with your brother!

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