David Bowie had died the day before my birthday, but the news didn't break in the US until my 36th birthday. January 11th, 2016. Someone said it must suck to have David Bowie die on your birthday. I corrected them, but all the news that day was about David Bowie. I was outside of it. I didn't really know his work. I was sad whenever anyone died, but didn't mourn like the rest of the world.
Three days later, it was my turn to be devastated. On January 14th, 2016, the world lost one of the greatest British actors to have graced the screen and stage. Alan Rickman, whom at some point I had a crush on, had died of cancer. No one had known he was sick. Except of course his wife and his closest friends.
I had loved the man. Not in a romantic way. And not the man whom his wife and friends had known. I had loved the artist. I had fallen in love with Colonel Branden. I had fallen in love with Severus Snape. I loved to hate The Sheriff of Nottingham, Rasputin, and Hans Grueber. I had cried when I realized Harry had cheated on Karen in Love Actually. He was so brilliant.
My friend Annie asked me on Facebook if I was okay. I told her I was, because of course he had a great life with a brilliant career. I had been in shock.
A Month later, maybe more, I was on IMDB.com. There was an in memorium video for artists lost so far in 2016. I made the mistake of watching it. Alan Rickman was second, and they showed him as Snape, saying his famous Harry Potter line, the heartbraking, "Always." I lost it. All the shock was gone. I wept for almost an hour. My husband was not home. I was home alone. All the pent up grief just let loose.
You see, Alan Rickman had been my friend during my psychosis. In the novels I had written about how I became a celebrity and moved to England, he and his wife had always been friends of mine. In my psychosis, I had believed these stories to be true. I felt like I had lost a close personal friend. Even though in moments of sanity I knew it was not true, I had watched interviews with him, read quotations. I knew I didn't know him, and yet my illness tricked me into believing I did. And in this grief I could not tell reality from fantasy. And when reality began to shine through again, I wept for the world at no longer seeing another brilliant performance of such an amazing actor. With such a voice.
There will be no voice like Alan Rickman's ever again. No deep soothing voice. And for that, I mourn.
Last night, I dreamed that I won a contest that I could hang out with the cast of any movie of my choosing. I picked Harry Potter. They asked me which one and I told them all the last one, including flashbacks and ghosts. The dream was littered with adventures and making movies of our own. But in the end, Alan Rickman had to die again, because he was in reality already dead. As he was dying in front of me, I threw my arms around him screaming and sobbing before falling back as he withered into nothing. The other cast members, Dame Maggie Smith and Emma Thompson said they didn't understand why someone who didn't know him was so upset.
Sunday, April 24, 2016
Saturday, February 20, 2016
The Cost Of Good Health Insurance
It's true that I have phenomenal Health Insurance, and that most people don't. I hear horror stories about how people can barely afford insurance and copays, coinsurance, deductibles, and premiums. And I get how it can be annoying when I forget these things and in a state of giddiness, post how awesome my insurance is.
But people have to remember the other side of why I have such awesome insurance. I am disabled. In such a way, that I will likely NEVER be able to work again. That is why I get SSDI, because I am permanently disabled. That's what it's there for. So I am entitled to Medicare.
I live in Massachusetts, which thanks to Mitt Romney and other politicians, has a great form of Medicaid, MassHealth. I am entitled to MassHealth for 2 reasons, 1) I am disabled, but more importantly, 2) I am very very poor.
My husband and I live off of my SSDI and SNAP benefits (food stamps). That's it. And the government is constantly trying to take our SNAP benefits away too. 85% of my income goes to rent and the most basic of utilities. That does not include cell phone usage. We cannot afford a car. We cannot afford a bus pass. I rely on my Health Insurance to provide medical transportation to and from my many doctors appointments. I rely on family to take me to the laundromat and the grocery store and the drug store. And they live 40 miles away and only come up twice a month.
When people talk about going out to dinner or buying things, that is a luxury we don't have. I get money once a month and have to make it last. Often I can't make it stretch and we go without. I pay all the bills when my check comes in, so that we are never without electricity, and if God forbid there is a fire and we lose everything, the renter's insurance is paid up.
I have friends who tell me I should get this movie, or this book, or try this restaurant, and I politely tell them, "Sure, when I get a chance." But what they don't realize is, that will never happen, because I will never be able to afford it. Once a month, we pick something low cost to buy as a treat to ourselves. This month I got glittery eyeliner for "Valentines Day" which cost $10. That was my fun treat for the month.
So back to health insurance. I get this awesome, all expenses covered health insurance that covers everything, but at what cost? I would rather be a working member of society, earning my own paycheck, and paying my own way, then this person who scrapes by every month and pisses people off when she posts about how she gets a years worth of free contact lenses.
Maybe the next President can fix the system, so that everyone has an equal shot at fair and affordable Health Care. My cousin shouldn't have to go broke paying for her Medicare or her Diabetes testing supplies. She paid through the system, it should be there for her, like it is for me.
But people have to remember the other side of why I have such awesome insurance. I am disabled. In such a way, that I will likely NEVER be able to work again. That is why I get SSDI, because I am permanently disabled. That's what it's there for. So I am entitled to Medicare.
I live in Massachusetts, which thanks to Mitt Romney and other politicians, has a great form of Medicaid, MassHealth. I am entitled to MassHealth for 2 reasons, 1) I am disabled, but more importantly, 2) I am very very poor.
My husband and I live off of my SSDI and SNAP benefits (food stamps). That's it. And the government is constantly trying to take our SNAP benefits away too. 85% of my income goes to rent and the most basic of utilities. That does not include cell phone usage. We cannot afford a car. We cannot afford a bus pass. I rely on my Health Insurance to provide medical transportation to and from my many doctors appointments. I rely on family to take me to the laundromat and the grocery store and the drug store. And they live 40 miles away and only come up twice a month.
When people talk about going out to dinner or buying things, that is a luxury we don't have. I get money once a month and have to make it last. Often I can't make it stretch and we go without. I pay all the bills when my check comes in, so that we are never without electricity, and if God forbid there is a fire and we lose everything, the renter's insurance is paid up.
I have friends who tell me I should get this movie, or this book, or try this restaurant, and I politely tell them, "Sure, when I get a chance." But what they don't realize is, that will never happen, because I will never be able to afford it. Once a month, we pick something low cost to buy as a treat to ourselves. This month I got glittery eyeliner for "Valentines Day" which cost $10. That was my fun treat for the month.
So back to health insurance. I get this awesome, all expenses covered health insurance that covers everything, but at what cost? I would rather be a working member of society, earning my own paycheck, and paying my own way, then this person who scrapes by every month and pisses people off when she posts about how she gets a years worth of free contact lenses.
Maybe the next President can fix the system, so that everyone has an equal shot at fair and affordable Health Care. My cousin shouldn't have to go broke paying for her Medicare or her Diabetes testing supplies. She paid through the system, it should be there for her, like it is for me.
Saturday, February 6, 2016
Mistaken Identity
I posted this picture on Facebook:
I tagged my husband, which means his friends could see the picture too. One of his friends asked if I was his mother. I replied, "Um no, I'm his wife. I'm 36, but went prematurely gray." We then went back and forth, me trying to make her feel less bad about confusing me with his 61 year old mother, and her telling me the gray hair suits me, and I really do NOT look 61.
I have been confused for a woman in her 40s, and 50s, and now 60s. But I will not dye it. I stopped dying it a year ago, and even though the temptation hits me as I pass by the hair dye section at CVS and Walmart, I resist. Too much work. And now my hair is so gray the roots show almost immediately, so I'd have to touch it up every two weeks. I'm just not up for that.
Just call me, "The Silver Fox".
I tagged my husband, which means his friends could see the picture too. One of his friends asked if I was his mother. I replied, "Um no, I'm his wife. I'm 36, but went prematurely gray." We then went back and forth, me trying to make her feel less bad about confusing me with his 61 year old mother, and her telling me the gray hair suits me, and I really do NOT look 61.
I have been confused for a woman in her 40s, and 50s, and now 60s. But I will not dye it. I stopped dying it a year ago, and even though the temptation hits me as I pass by the hair dye section at CVS and Walmart, I resist. Too much work. And now my hair is so gray the roots show almost immediately, so I'd have to touch it up every two weeks. I'm just not up for that.
Just call me, "The Silver Fox".
If My Husband Can Love Me For Who I Am, Why Can't I?
Well, I've done it this time. I have successfully alienated all my friends on Facebook by posting a depressing poem, and a painting of myself with my hair on fire, crying tears of blood. I have let my illness take over. I am not a person who has schizoaffective disorder, bipolar type. I AM schizoaffective with bipolar. Everyday, I remind myself of it. Whether it's swallowing one of 8 psych medications, or whether it's just feeling depressed or manic, or hearing voices or seeing things that aren't there. My illness controls me, and I've let it. Now I've let it creep onto Facebook, and no one knows what to think. I mean, who knows how to deal with that? So they stay away. I don't blame them. They have to protect themselves. Hanging around negativity isn't good for anyone. But sometimes, I just want to hear about their lives, and not talk about how I'm feeling. I want to hear the positives (or negatives) in their lives. I want to feel connected.
I joined a group last weekend on Facebook for Schizoaffective people and their loved ones. It's been great. I can post and comment and not have to worry about alienating everyone, because everyone there understands. They get it. They've been there.
It hasn't helped that my therapist has been out sick the last month with pneumonia. I missed a month of appointments. Fortunately she was back this week and I got to see her. She was still coughing a bit, poor thing. I felt bad for her.
I made a realization in the last month or so. I don't hate my life. Yes we are struggling with some things, but there are a lot more positives than negatives. I have fresh water, a roof over my head, food to eat, a loving family, my supportive and loving husband, and many many other things. I do not hate my life. And I thought that I hated myself. I even said it to a friend a week ago, who promptly said, "Talk to you later" and hasn't talked to me since. I don't hate myself either. But I hate the illness. I hate the things that come with having it, and the embarrassing things I've done or said as a result of it. The not having a filter, and saying what I feel. But it's a part of me, and I have to accept it. I will take my medications as prescribed, and I will go to all the therapy I can, including groups and support groups, and I will learn to accept who I am. Because really, if my husband can love me for who I am, why can't I?
I joined a group last weekend on Facebook for Schizoaffective people and their loved ones. It's been great. I can post and comment and not have to worry about alienating everyone, because everyone there understands. They get it. They've been there.
It hasn't helped that my therapist has been out sick the last month with pneumonia. I missed a month of appointments. Fortunately she was back this week and I got to see her. She was still coughing a bit, poor thing. I felt bad for her.
I made a realization in the last month or so. I don't hate my life. Yes we are struggling with some things, but there are a lot more positives than negatives. I have fresh water, a roof over my head, food to eat, a loving family, my supportive and loving husband, and many many other things. I do not hate my life. And I thought that I hated myself. I even said it to a friend a week ago, who promptly said, "Talk to you later" and hasn't talked to me since. I don't hate myself either. But I hate the illness. I hate the things that come with having it, and the embarrassing things I've done or said as a result of it. The not having a filter, and saying what I feel. But it's a part of me, and I have to accept it. I will take my medications as prescribed, and I will go to all the therapy I can, including groups and support groups, and I will learn to accept who I am. Because really, if my husband can love me for who I am, why can't I?
Wednesday, December 30, 2015
Burning of the Soul
I haven't written in almost a month. I was doing really well, and everything seemed to be going fine, and then I fell apart again.
You see, guinea pigs are expensive. 6 guinea pigs cost about $250 a month to feed when you add up the hay, pellets, and fresh veggies they need. We couldn't afford that anymore. So we made the difficult decision to give them up. That's when I fell apart again. I told my therapist, I can't keep having psychotic breakdowns everytime something bad happens in life. That's no way to live.
We gave the guinea pigs up to one of the best adoption centers in the Northeastern US. Within 2 days all 6 girls had been adopted. I have mixed feelings. I am glad that they will have the nutrition that they need. I am glad they will have someone to love them the way I couldn't when I got depressed. I'm glad they will have someone to clean out their cages instead of me who could just not keep up. I am also relieved that I no longer have that responsibility. But I am broken-hearted. I loved them, all 6 of them, with their own individual personalities. My husband and I have cried on and off for weeks.
But the truth is, we had to stop being selfish, and do what was in their best interest.
Now I don't know where I'm at. I'm feeling depressed for sure. But I'm not sleeping. I have nightmares and stress dreams. I am awake or half awake most of the night. Then during the day I can barely keep my eyes open. I am still having hallucinations, though they aren't as bad as before. A few weeks ago, I heard the Devil singing Christmas Carols on the way home from a brunch with my in-laws.
Today, I felt like painting. But I didn't want to paint a landscape, or a happy picture. I painted a self-portrait, with fire for hair, and blood for tears, pouring down my face. Am I in danger? No. Am I sad? Yes. But I am not going to hurt myself. I have expressed my pain creatively. I perhaps have scared all my friends, but they will soon forget about the strange painting their strange friend did. They always do.
There is so much going on. I don't know how I can present as "normal" when my mind feels like it's tearing itself apart at times. I have found some good distractions. I saw Star Wars. I'm reading Carrie Fisher's book Shockaholic. I am going to read some of Wil Wheaton;s work, and Jenny Lawson's book Furiously Happy, next.
I will be okay. That's the important thing. I am sad now, and as much as I hate the saying (I want to punch the people who say it), this will pass.
I have survived 100% of my worst days.
You see, guinea pigs are expensive. 6 guinea pigs cost about $250 a month to feed when you add up the hay, pellets, and fresh veggies they need. We couldn't afford that anymore. So we made the difficult decision to give them up. That's when I fell apart again. I told my therapist, I can't keep having psychotic breakdowns everytime something bad happens in life. That's no way to live.
We gave the guinea pigs up to one of the best adoption centers in the Northeastern US. Within 2 days all 6 girls had been adopted. I have mixed feelings. I am glad that they will have the nutrition that they need. I am glad they will have someone to love them the way I couldn't when I got depressed. I'm glad they will have someone to clean out their cages instead of me who could just not keep up. I am also relieved that I no longer have that responsibility. But I am broken-hearted. I loved them, all 6 of them, with their own individual personalities. My husband and I have cried on and off for weeks.
But the truth is, we had to stop being selfish, and do what was in their best interest.
Now I don't know where I'm at. I'm feeling depressed for sure. But I'm not sleeping. I have nightmares and stress dreams. I am awake or half awake most of the night. Then during the day I can barely keep my eyes open. I am still having hallucinations, though they aren't as bad as before. A few weeks ago, I heard the Devil singing Christmas Carols on the way home from a brunch with my in-laws.
Today, I felt like painting. But I didn't want to paint a landscape, or a happy picture. I painted a self-portrait, with fire for hair, and blood for tears, pouring down my face. Am I in danger? No. Am I sad? Yes. But I am not going to hurt myself. I have expressed my pain creatively. I perhaps have scared all my friends, but they will soon forget about the strange painting their strange friend did. They always do.
There is so much going on. I don't know how I can present as "normal" when my mind feels like it's tearing itself apart at times. I have found some good distractions. I saw Star Wars. I'm reading Carrie Fisher's book Shockaholic. I am going to read some of Wil Wheaton;s work, and Jenny Lawson's book Furiously Happy, next.
I will be okay. That's the important thing. I am sad now, and as much as I hate the saying (I want to punch the people who say it), this will pass.
I have survived 100% of my worst days.
Friday, December 4, 2015
Symptoms Vs Side Effects, the Pros and Cons of Latuda
I have finally found a pill that takes away the night terrors, the delusions, tames the magical thinking, makes me more aware that my thoughts are just altered because of my illness, not that they are real and everyone is out to get me. I am not so afraid of the dark. The magic pill is called Latuda. The magic dosage is 120mg.
But. There's always a but. I can't drink. Well that's nothing new, I can't drink with most of my other pills. I am sleepy or drowsy 24/7. If I lay down I will be asleep in 5 minutes. Answer to that? Don't lie down. I gained weight. This is perhaps because I have to eat 350 calories with my Lautda dose. That's not much in the grand scheme of things, but my appetite overall has increased. Ugh. Answer to that? Exercise more.
The answers may sound simple, but well, frankly, aren't. I can go without drinking for the most part. I cheat every now and then, which causes me terrible anxiety that I'm going to die in my sleep, so I don't sleep. Hmmm.... Being sleepy all the time is a problem because I fall asleep a lot. I also sleep well at night, so if I nap in the day, it's not keeping me up at night. I fall asleep in the car on the way to and from doctor's appointments (don't worry I am not driving). But I find if I have to be out and doing something to focus my energy on, like errands, I can do them. So while I'm not sure I could hold a 40 hour a week job, it seems probable now, not impossible.
And then there's eating. Latuda itself does not cause weight gain. But if you don't take it with 350 calories or more, it doesn't get absorbed properly and I get nauseous. It's amazing how few doctor's know this, and I have to educate them. Like when they put me on a liquid diet and I'm like, "Excuse me...but how do I get 350 calories on a liquid diet once a day?" So why am I gaining weight? I think it makes me hungrier. And I think I'm eating more than 350 calories with it, because I'm afraid of getting nauseated. I haven't gained a huge amount, but enough for me to keep an eye on.
So exercise more. Ugh. There are about 1,000,000 reasons to do it, and I have about 500 excuses not to. I'm not going to list them. Everyone tells me to exercise more. I just have to suck it up and do it.
So cost vs benefit analysis. Do I want to live in fear, or do I want to live with side effects?
I'm going to go with the side effects. Unless I get Type 2 diebetes or high blood pressure that can't be treated, I'm staying with the 120mg of Latuda.
But. There's always a but. I can't drink. Well that's nothing new, I can't drink with most of my other pills. I am sleepy or drowsy 24/7. If I lay down I will be asleep in 5 minutes. Answer to that? Don't lie down. I gained weight. This is perhaps because I have to eat 350 calories with my Lautda dose. That's not much in the grand scheme of things, but my appetite overall has increased. Ugh. Answer to that? Exercise more.
The answers may sound simple, but well, frankly, aren't. I can go without drinking for the most part. I cheat every now and then, which causes me terrible anxiety that I'm going to die in my sleep, so I don't sleep. Hmmm.... Being sleepy all the time is a problem because I fall asleep a lot. I also sleep well at night, so if I nap in the day, it's not keeping me up at night. I fall asleep in the car on the way to and from doctor's appointments (don't worry I am not driving). But I find if I have to be out and doing something to focus my energy on, like errands, I can do them. So while I'm not sure I could hold a 40 hour a week job, it seems probable now, not impossible.
And then there's eating. Latuda itself does not cause weight gain. But if you don't take it with 350 calories or more, it doesn't get absorbed properly and I get nauseous. It's amazing how few doctor's know this, and I have to educate them. Like when they put me on a liquid diet and I'm like, "Excuse me...but how do I get 350 calories on a liquid diet once a day?" So why am I gaining weight? I think it makes me hungrier. And I think I'm eating more than 350 calories with it, because I'm afraid of getting nauseated. I haven't gained a huge amount, but enough for me to keep an eye on.
So exercise more. Ugh. There are about 1,000,000 reasons to do it, and I have about 500 excuses not to. I'm not going to list them. Everyone tells me to exercise more. I just have to suck it up and do it.
So cost vs benefit analysis. Do I want to live in fear, or do I want to live with side effects?
I'm going to go with the side effects. Unless I get Type 2 diebetes or high blood pressure that can't be treated, I'm staying with the 120mg of Latuda.
Thursday, November 19, 2015
DBT Skills And A Haircut
I used my DBT skills in a dream I had a few nights ago. I dreamed that someone told me my mother died, and I was in a mall, so I began shoving people out of the way angrily and tearing down the escalator to jump into a fountain. A DBT skill for when you're at the moment of crisis when you just can't handle your feelings, is to stick your face in cold water for 30 seconds. Sounds weird, right? Well, it works. Something to do with making your body thinking you're drowning and it physically calms you down. I was all set to share my dream with my DBT group, until my medical transportation company couldn't get their act together and get me to my group. I will have to wait until next week to share.
Today I cut my hair off. To explain why would sound crazy, so I won't try and explain. Suffice it to say, I had black and gold hair a year and a half ago to support the Bruins, which in fact, only cursed them because they sucked after I did it. I haven't dyed it in a year, so I had about 5 inches of silver and the rest was faded black and blond, about 10 inches of it. So I cut off all the hair dye. My husband was not amused. The plan had been to grow it out until it reached my waist. But I had to do it. Again, I can't explain the rationale without coming across as "crazy", so I won't try. My mother is going to even it out next time I see her in a few weeks.
I had individual therapy today. It was a good session. Talked about loose ends not being tied up.
I lsiten to music 24/7 while I'm home. Not sure if I've already shared that. I can't not have music playing. I have a Jenn's Greatest Hits Playlist in iTunes that is literally over 1.2 days long. Distraction is a DBT skill. Music helps keep me sane. It drives my husband insane, but he bears it with patience and love. I also now have 2 candles burning during the day. One is Evergreen Spruce, and the other is Pumpkin Spice. I get the generic (cheap) candles at Walmart. That DBT skill is called Self-soothing.
I feel like I should send the link for this blog to the Psychologist who runs my DBT group. He would be thrilled to know I am using my skills.
Here's a picture of my long hair prior to being cut, and a picture of it post-hack. I might add, I am only 35. Gray/white hair is genetic. I expcet to be completely white-haired in 5 years, just like my grandmother.
Today I cut my hair off. To explain why would sound crazy, so I won't try and explain. Suffice it to say, I had black and gold hair a year and a half ago to support the Bruins, which in fact, only cursed them because they sucked after I did it. I haven't dyed it in a year, so I had about 5 inches of silver and the rest was faded black and blond, about 10 inches of it. So I cut off all the hair dye. My husband was not amused. The plan had been to grow it out until it reached my waist. But I had to do it. Again, I can't explain the rationale without coming across as "crazy", so I won't try. My mother is going to even it out next time I see her in a few weeks.
I had individual therapy today. It was a good session. Talked about loose ends not being tied up.
I lsiten to music 24/7 while I'm home. Not sure if I've already shared that. I can't not have music playing. I have a Jenn's Greatest Hits Playlist in iTunes that is literally over 1.2 days long. Distraction is a DBT skill. Music helps keep me sane. It drives my husband insane, but he bears it with patience and love. I also now have 2 candles burning during the day. One is Evergreen Spruce, and the other is Pumpkin Spice. I get the generic (cheap) candles at Walmart. That DBT skill is called Self-soothing.
I feel like I should send the link for this blog to the Psychologist who runs my DBT group. He would be thrilled to know I am using my skills.
Here's a picture of my long hair prior to being cut, and a picture of it post-hack. I might add, I am only 35. Gray/white hair is genetic. I expcet to be completely white-haired in 5 years, just like my grandmother.
Subscribe to:
Posts (Atom)