Sometime in the next month, I am going to be moving. That has been the plan since Mike and I ended our relationship several months ago. We've still been sharing a home up 'til now, partly for financial reasons, and partly because it's taken me a while to find affordable housing.
You see, most people that are on disability, whether that's SSI or SSDI, can't afford the market rent on most apartments. The last time I lived in an apartment, which was nearly ten years ago, I paid $425 a month in rent. I also had to pay utilities, of course. It would be very difficult for me to afford that on my current income, supposing I could even find a decent apartment with such low rent today.
The U.S. Department of Housing and Urban Development (HUD) has a number of programs to help people with low incomes afford housing. One program involves subsidizing rent for people with disabilities that meet specific income guidelines. They way it usually works is that a private management company has a contract with HUD that allows the company to rent apartments to people with disabilities and base their rent on their income. HUD pays the remainder of the rent. (By the way, if you want to look for apartment complexes in your area that offer subsidized housing for people with disabilities in your area, check out the HUD website here.)
In many ways, it's a great deal for people that otherwise couldn't afford housing. You get cheap rent and HUD requires the apartment meet certain criteria and pass an inspection by HUD (so it can't be a total dump). The downsides are that there aren't enough of these apartments for all the people needing affordable housing, there are usually long waiting lists (sometimes two years or more), the apartments are usually small and not the nicest you've ever seen, and you have to deal with all the red tape typically involved with getting benefits from a government agency to get into one.
I applied for an apartment at two different apartment complexes at the beginning of December. I expected it to take at least six months to get an apartment. However, I've now been informed that I am at the top of the waiting list and I expect to be moving sometime next month. I'm both excited and overwhelmed at the prospect.
Last week I had to go complete some additional paperwork for the apartment. It was a reminder of why I hate having to deal with government agencies in order to get benefits I need. They never make it easy. It's almost like they go out of their way to make it as difficult and stressful as possible. They give you a bunch of forms to fill out and the forms are so confusing that even I, with a college education, have trouble figuring out how to fill them out. When I ask questions, the person that gave me the forms has trouble figuring them out, too. They ask for documents at that last minute that I don't have or don't know how to get, and say they need those specific documents even though I have other documents that seem like they would serve the same purpose or even work better.
They do not tell me in advance that I'm going to need certain things; for instance, they told me four days ago that I could claim the costs of my vitamins as a medical expense, which would reduce my rent, if I had a letter from my physician saying they were medically necessary and receipts to verify the cost. Well, I saw my doctor two weeks ago and could have asked her to sign such a letter then, but I didn't know then that I would need such a letter. I have purchased plenty of vitamins since I applied for housing in December but I didn't save the receipts because I didn't know I was going to need them. Do you save all your vitamin receipts? Who does that, if they don't have a specific reason to save them? I suggested that in the future it might be helpful to give people a list of documents they will need when they first turn in an application, which I thought was a very helpful and reasonable suggestion, but the person I made the suggestion to did not seem to appreciate my input on the matter.
The whole experience reminded me of when I was first applying for disability and other benefits, how stressful it was, and how dehumanizing. That's what prompted me to post my poem, "Confession," the other night.
I don't actually like the apartment I will be moving to very much. I will write more about that later. I like where it is located, I like the fact that it is super affordable, I like the fact that it has a locked security door with buzzer and intercom, I like the fact that there is onsite laundry, etc. I like plenty of things about it. Just not the actually apartment. It's small and ugly. But you don't get many choices about where to live when you are disabled and have a very limited income.
Saturday, March 30, 2013
Thursday, March 28, 2013
A Day at the Doggie Park
Isaac and I decided to check out a new dog park today. Since it was chilly and early on a Thursday morning, I hoped it would not be too crowded. It wasn't; in fact, we had the whole place to ourselves for quite a while.
Isaac enjoyed running around like a lunatic, of course.
Then a man showed up with his dog, a lab/terrier mix. Isaac had a blast playing with her. Basically, they raced back and forth from one end of the park to the other. She got tired and wanted to rest, but Isaac would bark at her every time she stopped to rest, like he was saying, "Come on, lazy, let's go!"
There were two mud puddles at the edge of the park. Isaac found them, of course, and made a point of running through them multiple times. He would swerve out of his way to run through them. He also took a drink from one of them, even though I had fresh, clean water for him.
I guess that's how he got the mud on his face. Can you see it in this picture? He was muddy everywhere, though.
As soon as we got home, I got him into the tub. He was disappointed about that. Apparently it is tons of fun to play in cold, muddy puddles of water, but getting into a bathtub of warm, clean water is akin to torture.
Now he's a worn out dog.
I am worn out, too!
Isaac enjoyed running around like a lunatic, of course.
There were two mud puddles at the edge of the park. Isaac found them, of course, and made a point of running through them multiple times. He would swerve out of his way to run through them. He also took a drink from one of them, even though I had fresh, clean water for him.
I guess that's how he got the mud on his face. Can you see it in this picture? He was muddy everywhere, though.
Now he's a worn out dog.
Wednesday, March 27, 2013
A Visit to the Vet
Isaac had to see the vet today for a vaccine. I also wanted the vet to look at one of his teeth, which I noticed a couple weeks ago appeared oddly discolored.
There is a donkey that lives next door to Isaac's vet. Last time I took him to the vet, Isaac barked and barked at that donkey. Today, he just looked at the donkey like oh, that's no big deal.
Isaac now weighs 75 pounds. He's gained four pounds since the last time he went to the vet, which was about two months ago. I think that's partly because he hasn't gotten to go for a run as often as I'd like him to, both because of the weather and because of dog walkers that don't show up regularly, and partly because he talks me into too many treats. So I guess we need to cut back on the treats a bit.
Isaac does not like it when the vet listens to his heart and lungs with the stethoscope. He doesn't mind getting shots, but he thinks the stethoscope is rather scary. He tried to hide behind the vet tech, and then when he realized it was inevitable, the vet was actually going to touch him with that scary stethoscope, he assumed the facial expression and posture he assumes when he's getting his toenails cut. He looks very, very sad, as if he just can't believe anyone would do something so awful to him.
The vet said his tooth is fractured. He must have bit down on something and cracked it. He usually chews on bones and toys and things with the side of his mouth, not his front teeth, but somehow he cracked this one in the front. I bet it hurts. He hasn't been acting like it hurts, but I think it must. Now he has to have it pulled. They can't do it for two weeks, though. Poor baby boy.
Isaac's vet, by the way, is the Ashland Road Animal Clinic in Mansfield, Ohio. If anyone is looking for a good vet, I highly recommend them.
There is a donkey that lives next door to Isaac's vet. Last time I took him to the vet, Isaac barked and barked at that donkey. Today, he just looked at the donkey like oh, that's no big deal.
Isaac now weighs 75 pounds. He's gained four pounds since the last time he went to the vet, which was about two months ago. I think that's partly because he hasn't gotten to go for a run as often as I'd like him to, both because of the weather and because of dog walkers that don't show up regularly, and partly because he talks me into too many treats. So I guess we need to cut back on the treats a bit.
Isaac does not like it when the vet listens to his heart and lungs with the stethoscope. He doesn't mind getting shots, but he thinks the stethoscope is rather scary. He tried to hide behind the vet tech, and then when he realized it was inevitable, the vet was actually going to touch him with that scary stethoscope, he assumed the facial expression and posture he assumes when he's getting his toenails cut. He looks very, very sad, as if he just can't believe anyone would do something so awful to him.
The vet said his tooth is fractured. He must have bit down on something and cracked it. He usually chews on bones and toys and things with the side of his mouth, not his front teeth, but somehow he cracked this one in the front. I bet it hurts. He hasn't been acting like it hurts, but I think it must. Now he has to have it pulled. They can't do it for two weeks, though. Poor baby boy.
Isaac's vet, by the way, is the Ashland Road Animal Clinic in Mansfield, Ohio. If anyone is looking for a good vet, I highly recommend them.
Tuesday, March 26, 2013
One More Poem: On Insanity
Insanity
When you’re crazy
you get to tell the truth,
which is itself a blessing.
If you’re lucky,
you’re crazy enough
not to care or understand
when people tell you the truth,
which is an even better blessing.
Unfortunately, I have
only a mild case of insanity,
and I have seldom been blessed.
Another Poem: On Family and People that Don't Understand that Depression is an Illness Like Any Other
This poem was written almost ten years ago, when I asked my family for assistance while I was applying for disability and had no income at all. I was afraid I was going to end up homeless, living in my car or in a shelter.
Letter to My Sister
You did not visit me
in hospital,
did not send get
well cards
or vases of flowers.
That’s OK; they
wouldn’t
have let me keep the vases anyway.
You say I have been
sick long enough.
You do not say that
to our grandfather
as his Alzheimer’s
progresses.
As his mind becomes
a sieve,
as he no longer
recognizes you or your children,
as he becomes
incontinent,
you love him. You are patient,
you cook his
favorite foods,
even though he no
longer remembers
he loves them.
Even though
he no longer
remembers he loves you.
But you have decided
my illness is not an
illness
but an indulgence
from which
I should simply
abstain.
My mind is not a
sieve.
It holds on to
everything.
And yet, I am not
sure
I can recognize you
now.
Do you remember how
I walked with you
as you labored on a
salty summer night,
brought you herbal
tea and a birthing ball,
sat by your hospital
bed those long and lonely hours?
Oh, I do.
I went alone to the
emergency room.
No one sat by my bed
as they emptied my
stomach,
as they fed me thick
liquid charcoal
that stained my
hands and my lips.
No one walked with
me
onto that locked
ward.
You tell me I have
been depressed long enough.
You sit beside our
grandfather
on the porch swing,
hold the cat for him
to pet.
You are tender,
soft.
You tell me it is
enough.
I will wait alone on
the food stamp line.
I will put on
another sweater,
and turn down the
heat.
I will take my turn
cooking pork chops
and potatoes for Papa.
I will send your
children birthday cards.
It will not be
enough.
Poem on Becoming Disabled
I wrote this poem almost ten years ago, when I first realized I had to quit the job that I loved and apply for disability and other benefits. Yes, there is a reason I'm sharing it now. Maybe I'll explain later. For now, here's the poem.
Confession
This is my confession:
these hands can work no more.
I packed up my desk, took my coffee mug
and my rolodex.
Forgive me.
I took a vow of poverty,
emptied my ego and my bank account.
Forgive me my debts
in bankruptcy court tomorrow.
The county teaches a catechism of humility
daily at the welfare office.
First communion is served on Tuesdays and Thursdays
at the St. Francis soup kitchen.
Forgive me, I cannot swallow it.
Who is the patron saint of the disabled and of flightless
sparrows?
Holy Mary, Mother of God, pray for the stricken
and put your arms around the sparrow.
Amen.
Monday, March 25, 2013
Hospitalization (Part VI)
Read the first five parts of this story here:
Hospitalization (Part I)
Hospitalization (Part II)
Hospitalization (Part III)
Hospitalization (Part IV)
Hospitalization (Part V)
The entire time I was in the hospital, I was extremely anxious. Not just anxious, but fearful. I did not feel safe.
On top of that, I was unable to see my therapist (I missed a scheduled appointment; when I saw her following my release, she was unhappy that hospital staff had not even bothered to call her to let her know I'd been hospitalized, as she says they typically do at other hospitals), I did not have my service dog (maybe I'll write about why I did not even ask to be permitted to have him on the unit another time), I had difficulty keeping in touch with friends since I had no internet access and no place to make private phone calls, and I found it difficult to sleep due to all the noise at night since I was not permitted to shut my bedroom door. My condition worsened significantly while I was in the hospital.
Let me say that again. My condition worsened significantly while I was in the hospital.
I think that's the thing I'm the most angry about.
Consider this:
Before I was hospitalized, I was having three or four nightmares a month. Now, four months after my hospitalization, I have nightmares four or five times a week.
Before my hospitalization, it had been a few years since I'd woken up at night screaming. In the four months since my hospitalization, though, that's happened a number of times.
I've always had a lot of trouble sleeping, but that's gotten even worse since my hospitalization. Last night, for instance, I fell asleep around 11:00 pm and woke up at 1:30 am, unable to go back to sleep. I was up until about 4:30 am, when I finally went back to sleep and slept until 6:00 am. And that's a typical night for me these days. Four hours of broken sleep. Actually, I consider last night a good night, because there were no nightmares.
I had pretty severe anxiety before my hospitalization. Severe enough that I was prescribed medication for it and had a service dog trained to assist me with it. But since the hospitalization, the anxiety has been much worse. I probably use at least twice as much medication for it as I used to.
And I have some issues now that I never had prior to that hospitalization.
I am now afraid of seeking medical care. Initially I thought I would just never go to the ER again. But now, four months later, no health care providers feel safe to me. I've been completely out of pain medication for my back for a while now and the back specialist will not call in any more refills for me, and I'm afraid to go in to see him, so I've just been doing without. I suffered with a sinus infection for six weeks before I got up the nerve to go see my primary care provider and ask for antibiotics. I was terrified of seeing my psychiatrist, even though I've always liked him and trusted him in the past, and ended up deciding to go off my antidepressants rather than go back to see him again.
When I was discharged from the hospital, I still had staples in my arms. I was instructed I should see my primary care provider a few days after discharge to have them removed. I removed them myself at home instead. I actually told the nurse at the hospital that I planned to do that, that I was afraid of seeking medical care. She said, "Please don't do that," but didn't do anything to address the fear. Removing them was easy. You just use clean wire cutters to clip them in the middle, then use tweezers to pull each side gently out.
I've considered what I will do if I ever cut myself and need sutures again in the future. I don't think that's all that likely, since it's only happened twice ever, but it's possible. Or what if I just trip and fall and cut myself accidentally? That happened once, too. Well, I discussed this with a friend of mine and he pointed out that one can actually buy a suture kit and find tutorials online to learn how to suture. I'm sure this sounds extreme and nutty to many people, but I thought about it, and then started googling.
I ended up buying a surgical stapler from Amazon.com. It was cheap, too. I figured it would but a lot easier to staple a wound than to suture it, especially if it was on my arm and I had to do it one-handed. It even came with a surgical staple remover, so there's no need for the wire cutters.
I've decided I'm into DIY medicine from now on.
But seriously, I think the fear of seeking medical care is a really serious problem. And I don't know how to deal with it, especially since I'm also afraid of seeing my therapist now, too. Initially after the hospitalization, I was able to see her. But after I decided not to go back to my psychiatrist and to stop taking my antidepressants, I figured she would disapprove of that and then I was afraid to go back to see her. I don't think therapy was going to be very helpful for me, anyway, because I don't feel I can be honest with health care providers about how I'm doing if I'm not doing very well. If I have to pretend everything's OK, then what's the point of going to therapy? How's it going to help?
Hospitalization (Part I)
Hospitalization (Part II)
Hospitalization (Part III)
Hospitalization (Part IV)
Hospitalization (Part V)
The entire time I was in the hospital, I was extremely anxious. Not just anxious, but fearful. I did not feel safe.
On top of that, I was unable to see my therapist (I missed a scheduled appointment; when I saw her following my release, she was unhappy that hospital staff had not even bothered to call her to let her know I'd been hospitalized, as she says they typically do at other hospitals), I did not have my service dog (maybe I'll write about why I did not even ask to be permitted to have him on the unit another time), I had difficulty keeping in touch with friends since I had no internet access and no place to make private phone calls, and I found it difficult to sleep due to all the noise at night since I was not permitted to shut my bedroom door. My condition worsened significantly while I was in the hospital.
Let me say that again. My condition worsened significantly while I was in the hospital.
I think that's the thing I'm the most angry about.
Consider this:
Before I was hospitalized, I was having three or four nightmares a month. Now, four months after my hospitalization, I have nightmares four or five times a week.
Before my hospitalization, it had been a few years since I'd woken up at night screaming. In the four months since my hospitalization, though, that's happened a number of times.
I've always had a lot of trouble sleeping, but that's gotten even worse since my hospitalization. Last night, for instance, I fell asleep around 11:00 pm and woke up at 1:30 am, unable to go back to sleep. I was up until about 4:30 am, when I finally went back to sleep and slept until 6:00 am. And that's a typical night for me these days. Four hours of broken sleep. Actually, I consider last night a good night, because there were no nightmares.
I had pretty severe anxiety before my hospitalization. Severe enough that I was prescribed medication for it and had a service dog trained to assist me with it. But since the hospitalization, the anxiety has been much worse. I probably use at least twice as much medication for it as I used to.
And I have some issues now that I never had prior to that hospitalization.
I am now afraid of seeking medical care. Initially I thought I would just never go to the ER again. But now, four months later, no health care providers feel safe to me. I've been completely out of pain medication for my back for a while now and the back specialist will not call in any more refills for me, and I'm afraid to go in to see him, so I've just been doing without. I suffered with a sinus infection for six weeks before I got up the nerve to go see my primary care provider and ask for antibiotics. I was terrified of seeing my psychiatrist, even though I've always liked him and trusted him in the past, and ended up deciding to go off my antidepressants rather than go back to see him again.
When I was discharged from the hospital, I still had staples in my arms. I was instructed I should see my primary care provider a few days after discharge to have them removed. I removed them myself at home instead. I actually told the nurse at the hospital that I planned to do that, that I was afraid of seeking medical care. She said, "Please don't do that," but didn't do anything to address the fear. Removing them was easy. You just use clean wire cutters to clip them in the middle, then use tweezers to pull each side gently out.
I've considered what I will do if I ever cut myself and need sutures again in the future. I don't think that's all that likely, since it's only happened twice ever, but it's possible. Or what if I just trip and fall and cut myself accidentally? That happened once, too. Well, I discussed this with a friend of mine and he pointed out that one can actually buy a suture kit and find tutorials online to learn how to suture. I'm sure this sounds extreme and nutty to many people, but I thought about it, and then started googling.
I ended up buying a surgical stapler from Amazon.com. It was cheap, too. I figured it would but a lot easier to staple a wound than to suture it, especially if it was on my arm and I had to do it one-handed. It even came with a surgical staple remover, so there's no need for the wire cutters.
I've decided I'm into DIY medicine from now on.
But seriously, I think the fear of seeking medical care is a really serious problem. And I don't know how to deal with it, especially since I'm also afraid of seeing my therapist now, too. Initially after the hospitalization, I was able to see her. But after I decided not to go back to my psychiatrist and to stop taking my antidepressants, I figured she would disapprove of that and then I was afraid to go back to see her. I don't think therapy was going to be very helpful for me, anyway, because I don't feel I can be honest with health care providers about how I'm doing if I'm not doing very well. If I have to pretend everything's OK, then what's the point of going to therapy? How's it going to help?
Sunday, March 24, 2013
All in a Day's Work
Today, Isaac and I went to Panera, the grocery store, and the library. And today:
- Two small kids pointed and squealed "Doggie!" (which I don't really mind, they were little kids)
- One woman asked to pet Isaac (while he was lying quietly under the table at Panera, no less)
- One man petted him without asking
- Four people told him he was a pretty doggie
- One woman asked me why I need a service dog
Saturday, March 23, 2013
More on When Service Dogs Don't Work Out
A couple weeks ago, I wrote about a woman I know of who made the difficult decision to return her service dog to the program she got him from because he had severe skin allergies. She had the dog for about a year and spent hundreds of dollars, which she could ill afford, taking him to specialists for treatment. She was advised by a veterinary specialist at a university veterinary hospital that he should not be a working dog because working exposes him to more allergens and makes his condition worse. She loves this dog deeply and was heartbroken at having to return him, but felt it was the best thing for him.
The program she got him from promises that if a dog must be retired due to health problems, they will find him a good home where he will be a family pet and will get the medical care he needs. Last week, she put him on an airplane with a volunteer to deliver him back to this program in another state. Then she went home to her empty apartment and cried.
She's since heard from someone with the program and he has arrived safely. However, she is deeply disturbed, as am I at what they are now telling her. They are now telling her that they will be keeping him in their kennel, where they keep the dogs they are training, for four to six months, then placing him with another person with a disability in need of a service dog. This is disturbing for a number of reasons. First, this dog is used to living in a house with people. Now he's going to be in a kennel for up to six months. How sad is that for the dog? Second, a highly qualified veterinary specialist has said he is not healthy enough to work, that it exposes him to additional allergens and makes him sicker. So his condition will continue to worsen. Third, another person with a disability will end up struggling to pay for his medical bills and will probably end up having to make the same heartbreaking decision this other woman had to make.
And I feel terrible for this woman, who loved her dog so much she made the decision to let him go because she believed it was what would be best for him, who now learns the program is not going to find him a good home where he can be a much loved pet after all but is planning to have him continue working despite his health problems. She's probably questioning her decision and second guessing herself right now, which is sad because she did everything she possibly could for her dog.
I'm not going to name the service dog program here because I am a bit concerned about liability issues, but if anyone is considering getting a service dog and wants to be sure to avoid this program, feel free to email me at poet_kelly at yahoo dot com. I would definitely want to avoid them and I'll be happy to share the info with you.
The program she got him from promises that if a dog must be retired due to health problems, they will find him a good home where he will be a family pet and will get the medical care he needs. Last week, she put him on an airplane with a volunteer to deliver him back to this program in another state. Then she went home to her empty apartment and cried.
She's since heard from someone with the program and he has arrived safely. However, she is deeply disturbed, as am I at what they are now telling her. They are now telling her that they will be keeping him in their kennel, where they keep the dogs they are training, for four to six months, then placing him with another person with a disability in need of a service dog. This is disturbing for a number of reasons. First, this dog is used to living in a house with people. Now he's going to be in a kennel for up to six months. How sad is that for the dog? Second, a highly qualified veterinary specialist has said he is not healthy enough to work, that it exposes him to additional allergens and makes him sicker. So his condition will continue to worsen. Third, another person with a disability will end up struggling to pay for his medical bills and will probably end up having to make the same heartbreaking decision this other woman had to make.
And I feel terrible for this woman, who loved her dog so much she made the decision to let him go because she believed it was what would be best for him, who now learns the program is not going to find him a good home where he can be a much loved pet after all but is planning to have him continue working despite his health problems. She's probably questioning her decision and second guessing herself right now, which is sad because she did everything she possibly could for her dog.
I'm not going to name the service dog program here because I am a bit concerned about liability issues, but if anyone is considering getting a service dog and wants to be sure to avoid this program, feel free to email me at poet_kelly at yahoo dot com. I would definitely want to avoid them and I'll be happy to share the info with you.
Hospitalization (Part V)
The morning after I was involuntarily admitted to the hospital, I got to meet with the psychiatrist that had admitted me the night before without seeing or speaking to me. He spent about ten whole minutes with me. Mike was at the hospital with me when the doctor arrived and I wanted him to stay while I talked to the doctor, but the doctor absolutely refused to allow him to stay. He said that after he talked with me privately first, then he would allow Mike to come in and he would speak with both of us together. That's not what happened, though. After spending ten minutes with me, he left, without inviting Mike to come back in.
All patients, in psychiatric units and other hospital units, are supposed to have the right to have family members or friends involved in their care if they wish, but I was denied that right. Since having a strong support network is especially beneficial to people with conditions like depression, it seems like it would be even more important to include people of the patient's choosing in the treatment process in instances of mental illness, but apparently that is not how things are done at this particular hospital.
The doctor told me that state law required him to admit me for three days since I could be considered a danger to myself. I told him I thought the law said he could admit me for three days, not that he was required to. He then agreed that it was not a requirement. That may seem like a small thing, but it bothered me because I felt like he was assuming I was too stupid to understand what the law really said and was trying to mislead me about it.
I tried to explain why I felt that I would be better off at home than in the hospital but he wasn't listening. He said he believed I would hurt myself as soon as I was discharged, since I had a history of self-injury, and that he didn't think anything they did in the hospital would change that. I said in that case, then why should I stay for three days? If I'm going to hurt myself anyway, what different does it make if I do that in three days or in two days or in just one day?
He said the difference was that if he kept me for the three days allowed by law, he could not be sued when I went home and hurt myself again.
I said, "Let me make sure I'm understanding you correctly. You are not keeping me in the hospital because you think it will benefit me. You are keeping me here so you do not get sued."
He said, "Yes, that's right." Seriously. That's what he said. I have no witness to that since he would not allow Mike to stay in the room while he spoke with me, but he said that.
It turned out, by the way, that the law allows patients to be involuntarily admitted for up to three business days. Don't ask me why it matters if it's a weekday or a weekend, but that's how the law is written. Since I was admitted on Friday evening, that means I ended up being held there for five days.
I also told the psychiatrist how the emergency room physician had denied me any pain medication but he did not seem concerned about that.
Later that day, I finally got to see the real patient rights advocate, although I found him less than helpful. He told me all he could do for me was to write a note in my chart to let my doctor know that I was unhappy with the way I had been treated in the ER. Well, I'd already told my doctor that, but he didn't care. I told the patient rights advocate that I didn't understand the point of his role, if that was all he could do. He then advised me that I could file a formal grievance with the hospital if I wanted. He said I would have to ask a nurse for a form to do that, he could not give me the form, and he could not tell me anything else or answer any questions about how that process worked. I don't get why his job even exists, since he apparently does nothing whatsoever. Maybe the hospital just thinks it sounds good to say they have patient rights advocates available?
All patients, in psychiatric units and other hospital units, are supposed to have the right to have family members or friends involved in their care if they wish, but I was denied that right. Since having a strong support network is especially beneficial to people with conditions like depression, it seems like it would be even more important to include people of the patient's choosing in the treatment process in instances of mental illness, but apparently that is not how things are done at this particular hospital.
The doctor told me that state law required him to admit me for three days since I could be considered a danger to myself. I told him I thought the law said he could admit me for three days, not that he was required to. He then agreed that it was not a requirement. That may seem like a small thing, but it bothered me because I felt like he was assuming I was too stupid to understand what the law really said and was trying to mislead me about it.
I tried to explain why I felt that I would be better off at home than in the hospital but he wasn't listening. He said he believed I would hurt myself as soon as I was discharged, since I had a history of self-injury, and that he didn't think anything they did in the hospital would change that. I said in that case, then why should I stay for three days? If I'm going to hurt myself anyway, what different does it make if I do that in three days or in two days or in just one day?
He said the difference was that if he kept me for the three days allowed by law, he could not be sued when I went home and hurt myself again.
I said, "Let me make sure I'm understanding you correctly. You are not keeping me in the hospital because you think it will benefit me. You are keeping me here so you do not get sued."
He said, "Yes, that's right." Seriously. That's what he said. I have no witness to that since he would not allow Mike to stay in the room while he spoke with me, but he said that.
It turned out, by the way, that the law allows patients to be involuntarily admitted for up to three business days. Don't ask me why it matters if it's a weekday or a weekend, but that's how the law is written. Since I was admitted on Friday evening, that means I ended up being held there for five days.
I also told the psychiatrist how the emergency room physician had denied me any pain medication but he did not seem concerned about that.
Later that day, I finally got to see the real patient rights advocate, although I found him less than helpful. He told me all he could do for me was to write a note in my chart to let my doctor know that I was unhappy with the way I had been treated in the ER. Well, I'd already told my doctor that, but he didn't care. I told the patient rights advocate that I didn't understand the point of his role, if that was all he could do. He then advised me that I could file a formal grievance with the hospital if I wanted. He said I would have to ask a nurse for a form to do that, he could not give me the form, and he could not tell me anything else or answer any questions about how that process worked. I don't get why his job even exists, since he apparently does nothing whatsoever. Maybe the hospital just thinks it sounds good to say they have patient rights advocates available?
Thursday, March 21, 2013
Hospitalization (Part IV)
If you've never been in a psychiatric unit, it's not the same as
being on any other unit in a hospital. There are typically no
televisions or telephones in the patient rooms. There is a patient
lounge where patients can watch television and there is a phone
available on the unit for patients, but it's not very private. Visiting
hours are much more limited than on most other hospital units, with
visitors usually only being allowed in the evenings during the week but
also in the afternoon on weekends and holidays. There are usually
laundry facilities available for patients to wash their clothes;
patients usually wear street clothes on the unit.
Psychiatric units limit the kinds of belongings patients can have in their rooms, for safety reasons. I've been visiting psychiatric units for more than 20 years now, and it seems to me that over the years, they've gotten stricter about what things they allow. For instance, there was a time when patients were usually allowed to have portable tape players with headphones. They usually don't allow those anymore, though. I don't know if they think patients might hang themselves with those little cords that connect the headphones to the CD player or what.
There is not a lot of privacy on a psychiatric unit, although there really is not a lot of privacy in any hospital setting, really. But on a psychiatric unit, they check on patients all the time. Like every 15 minutes or something.
At my local hospital, they have a rule on the psychiatric unit that patients are not allowed to shut their bedroom doors. At night, the lights in the hallway are bright and the night shift nurses talk and laugh loudly much of the night. It's very hard to sleep.
The only door patients are allowed to close there is their bathroom door. There is no lock on the bathroom door, though, of course. One day while I there, I was in the bathroom, doing the personal things people do in bathrooms, you know, and the housekeeper walked right in without knocking. After that, I felt unsafe in the bathroom.
I know hospital food is usually not very good, and no one really expects it to be good, but the food I got during this hospitalization was horrible. I am a vegetarian, and they actually had a separate vegetarian menu. However, they apparently have very few vegetarian options. I had soggy grilled cheese sandwiches and cheese pizza almost every day. Since I had gastric bypass surgery, I try to eat a diet higher in protein and lower in carbs, but they just didn't have any better options for me. I had a friend bring in some protein bars for me so that I could supplement my diet.
They provided no real treatment for me while I was in the hospital. They did give me medication, but it was the same medication I'd been taking at home for quite some time. They didn't change anything. In addition to my antidepressants, I take a number of vitamin supplements, and I had to have a friend bring those to me from home. The hospital didn't have the right kinds of vitamins.
My local hospital offers no individual therapy; most inpatient psych units don't, although a few do. While I was there, they did offer a couple of group sessions each day, except for Sunday, when there were none. There was one group session where they discussed communication skills and how to be assertive, which is something I used to teach when I was a social worker. There was one group session where they talked about ways to be healthier, like eating well, exercising, and getting enough sleep. There was one group session in which we played a board game that was meant to help us identify and develop our leisure skills. In another session, we played a board game that was meant to improve our self-esteem. Improving my self-esteem probably would be good for me, but I didn't think the board game really did much for my self-esteem. Plus, being in a situation in which I had no choices, no privacy, and was not listened to was damaging my self-esteem, much more so than any board game could improve it.
A couple times, someone asked me if I was feeling suicidal. I wasn't; I wasn't feeling suicidal when I cut myself, either. No one seemed to get that distinction, though. No one ever asked if I was feeling like hurting myself or cutting myself the entire time I was in the hospital, not once. I wouldn't have admitted it if I was, because I wanted to get out of there. But they didn't even ask. No one tried to help me come up with better coping skills or anything like that. They never really addressed the issues that brought me to the hospital in the first place.
Psychiatric units limit the kinds of belongings patients can have in their rooms, for safety reasons. I've been visiting psychiatric units for more than 20 years now, and it seems to me that over the years, they've gotten stricter about what things they allow. For instance, there was a time when patients were usually allowed to have portable tape players with headphones. They usually don't allow those anymore, though. I don't know if they think patients might hang themselves with those little cords that connect the headphones to the CD player or what.
There is not a lot of privacy on a psychiatric unit, although there really is not a lot of privacy in any hospital setting, really. But on a psychiatric unit, they check on patients all the time. Like every 15 minutes or something.
At my local hospital, they have a rule on the psychiatric unit that patients are not allowed to shut their bedroom doors. At night, the lights in the hallway are bright and the night shift nurses talk and laugh loudly much of the night. It's very hard to sleep.
The only door patients are allowed to close there is their bathroom door. There is no lock on the bathroom door, though, of course. One day while I there, I was in the bathroom, doing the personal things people do in bathrooms, you know, and the housekeeper walked right in without knocking. After that, I felt unsafe in the bathroom.
I know hospital food is usually not very good, and no one really expects it to be good, but the food I got during this hospitalization was horrible. I am a vegetarian, and they actually had a separate vegetarian menu. However, they apparently have very few vegetarian options. I had soggy grilled cheese sandwiches and cheese pizza almost every day. Since I had gastric bypass surgery, I try to eat a diet higher in protein and lower in carbs, but they just didn't have any better options for me. I had a friend bring in some protein bars for me so that I could supplement my diet.
They provided no real treatment for me while I was in the hospital. They did give me medication, but it was the same medication I'd been taking at home for quite some time. They didn't change anything. In addition to my antidepressants, I take a number of vitamin supplements, and I had to have a friend bring those to me from home. The hospital didn't have the right kinds of vitamins.
My local hospital offers no individual therapy; most inpatient psych units don't, although a few do. While I was there, they did offer a couple of group sessions each day, except for Sunday, when there were none. There was one group session where they discussed communication skills and how to be assertive, which is something I used to teach when I was a social worker. There was one group session where they talked about ways to be healthier, like eating well, exercising, and getting enough sleep. There was one group session in which we played a board game that was meant to help us identify and develop our leisure skills. In another session, we played a board game that was meant to improve our self-esteem. Improving my self-esteem probably would be good for me, but I didn't think the board game really did much for my self-esteem. Plus, being in a situation in which I had no choices, no privacy, and was not listened to was damaging my self-esteem, much more so than any board game could improve it.
A couple times, someone asked me if I was feeling suicidal. I wasn't; I wasn't feeling suicidal when I cut myself, either. No one seemed to get that distinction, though. No one ever asked if I was feeling like hurting myself or cutting myself the entire time I was in the hospital, not once. I wouldn't have admitted it if I was, because I wanted to get out of there. But they didn't even ask. No one tried to help me come up with better coping skills or anything like that. They never really addressed the issues that brought me to the hospital in the first place.
Hospitalization (Part III)
Before I was taken to the psychiatric unit, I asked to speak to a patient rights advocate. I felt I was not receiving the quality of care I should have been getting, since I was being denied pain medication. I was informed that the hospital's policy was that a patient rights advocate would contact a patient on request withing 24 hours of the request. I also asked several times to speak to the social worker I'd talked to earlier but was told she was not available. I asked to speak to someone in charge of the ER and was told by the nurse that she'd see if the person in charge was available, but I guess that person was not available because I never saw anyone in charge.
After about eight hours in the ER, I was finally take up to the psychiatric unit, where I was happy to find there was no patient in the other bed in my room. At least I had a room to myself.
I was on the unit almost three hours before I finally got some pain medication. I kept asking for it, over and over again, and was told that it had finally been ordered for me but that it often took a few hours for the pharmacy to send medication upstairs. No one seemed very concerned about my pain.
About the time my pain meds finally got to the floor, the nurse told me that the patient rights advocate was there to speak with me. However, the man correct her and said he was not a patient rights advocate, he was a chaplain. I asked why a chaplain had been sent to see me but no one seemed to know. The nurse seemed confused to hear that a chaplain and a patient rights advocate are not the same thing. I certainly had not asked to speak to a chaplain. I am not Christian and would not expect to find a pagan chaplain working in my local hospital.
The chaplain asked if he could talk to me anyway, even though I hadn't asked to see him. I agreed to speak to him because I was upset that no one was listening to me and thought perhaps he could do... something. I don't know what I thought he might be able to do for me but I guess I thought he could get in touch with the patient rights advocate or talk to someone in charge about what was happening. He never told me he could do those things, I was just hoping. That's not what he did, though.
He asked me what happened that caused me to cut myself. I didn't feel like trying to explain everything so I just said something like, "I've had depression for years and years. A lot of bad stuff happened to me when I was a child." He told me that had a lot of bad stuff happen to him when he was a child, too, and that he used to suffer from depression, as well.
Can you guess what's coming? He got over his depression. He was cured. Now he is filled with joy, and all because he found God. He prayed and he forgave the people that hurt him, and that's all it took to cure his depression. He was sure it would work for me, too. All I needed to do was to pray and forgive the people that hurt me, and then I wouldn't be depressed anymore and would not need to be hospitalized ever again.
After about eight hours in the ER, I was finally take up to the psychiatric unit, where I was happy to find there was no patient in the other bed in my room. At least I had a room to myself.
I was on the unit almost three hours before I finally got some pain medication. I kept asking for it, over and over again, and was told that it had finally been ordered for me but that it often took a few hours for the pharmacy to send medication upstairs. No one seemed very concerned about my pain.
About the time my pain meds finally got to the floor, the nurse told me that the patient rights advocate was there to speak with me. However, the man correct her and said he was not a patient rights advocate, he was a chaplain. I asked why a chaplain had been sent to see me but no one seemed to know. The nurse seemed confused to hear that a chaplain and a patient rights advocate are not the same thing. I certainly had not asked to speak to a chaplain. I am not Christian and would not expect to find a pagan chaplain working in my local hospital.
The chaplain asked if he could talk to me anyway, even though I hadn't asked to see him. I agreed to speak to him because I was upset that no one was listening to me and thought perhaps he could do... something. I don't know what I thought he might be able to do for me but I guess I thought he could get in touch with the patient rights advocate or talk to someone in charge about what was happening. He never told me he could do those things, I was just hoping. That's not what he did, though.
He asked me what happened that caused me to cut myself. I didn't feel like trying to explain everything so I just said something like, "I've had depression for years and years. A lot of bad stuff happened to me when I was a child." He told me that had a lot of bad stuff happen to him when he was a child, too, and that he used to suffer from depression, as well.
Can you guess what's coming? He got over his depression. He was cured. Now he is filled with joy, and all because he found God. He prayed and he forgave the people that hurt him, and that's all it took to cure his depression. He was sure it would work for me, too. All I needed to do was to pray and forgive the people that hurt me, and then I wouldn't be depressed anymore and would not need to be hospitalized ever again.
Wednesday, March 20, 2013
Hospitalization (Part II)
So I talked with the social worker in the ER and she informed me that my psychiatrist was out of town so she could not call him to discuss whether or not I needed to be admitted. She would have to talk with the psychiatrist on call, who had never met me. I had a bad feeling about that. I explained to her all the reasons why I thought it would actually be better for me not to be admitted: I had an appointment in three days with my therapist, and I would not get any therapist in the hospital; many of my coping skills, like taking walks, taking hot baths, and listening to music would not be available to me in the hospital; I had just received my service dog a week before and being away from him would be stressful for me; and so on. She acted like she understood all that and said she'd talk to the doctor on call about.
I also told her that my psychiatrist and I had previously agreed that my local hospital did not do a very good job of providing inpatient psychiatric care. He has privileges there and sees patients there because it's the hospital nearest his office, so the most convenient for him and most of his patients. But he told me that if he or a member of his family needed inpatient psychiatric care, he would not go there. He told me where he would go and agreed with me that I should seek inpatient care elsewhere if needed. The social worker said that if the doctor on call felt I needed to be admitted, she would see what she could do about arranging for me to be transferred elsewhere.
Well, I don't know what she actually told the doctor on call, but a couple hours later, the ER physician (not the psychiatrist on call, this was a medical doctor) came in and informed me I was going to be admitted. I was upset. I asked what about being transferred to another hospital and he said he didn't know anything about that, but that the psychiatrist on call, without ever actually speaking to me himself, had declared I was a danger to myself and was to be admitted for a 72 hour hold. I asked to speak to the social worker to find out why I was not being allowed to go to another hospital but was told she was not available and that maybe I could speak to her later. I never was able to speak to her later, though.
Now, I was in the ER for about eight hours altogether. It was very cold. I had to ask repeatedly for a blanket before someone finally got me one. Then the nurse came in to clean my wounds and she washed them, getting the blanket wet. So then I had a wet, cold blanket. It took a very long time to get another.
After I'd been there for several hours, I asked for something to eat. I can't eat that much at one time, since I had gastric bypass surgery, and it had been a long time since I'd eaten. I was told I could have some saltines or some graham crackers. Now, I have reactive hypoglycemia, and if I eat starchy carbs without any protein, it often makes my blood sugar drop very low and I feel like crap. Mind you, when I say my blood sugar drops very low, I mean it has been as low as 37 in the past when I've tested it. But they refused to bring me anything but crackers.
A couple hours later, after a lot more complaining, they finally agreed to order me a dinner tray. The dinner tray arrived at the same time the ER physician arrived to tell me I was being admitted and to treat my wounds. As you might imagine, that killed my appetite.
The most traumatic thing that occurred while I was in the hospital was the treatment I received from the ER physician. He announced that he was going to staple the wounds on my arms rather than suture them. I have no clue how one determines if staples or sutures are most appropriate and I did not care whether they were stapled or sutured. He said that two of the cuts on my left arm and one on my right arm needed stapled.
And then I realized he was getting ready to start stapling. I had not been given any lidocaine or anything to numb the area. I've had stitches in the past on two occasions, once when I fell and cut my lip and once when I cut my wrist (I was treated at a different hospital then, and the doctor there was extremely compassionate and gentle and caring; I remember he injected lidocaine before doing anything, including before he cleaned the cut, so that it would not hurt when he cleaned it), and both times I was injected with lidocaine and didn't have to ask for it.
Those of you that know me know I'm typically not shy about speaking up with health care providers. So I said, "Hey! Aren't I supposed to get some lidocaine or something?"
The doctor said, "It's not necessary," and started stapling.
Now, I've since been told that sometimes doctors feel it's more painful to inject the lidocaine than it is to just put in the staples, depending on how many staples are needed. I was told by the director of the emergency room that stapling wounds doesn't hurt that much (I'm not sure how many staples she's had put in her body, though). And I acknowledge that the perception of pain is sometimes not just a physical thing but that one's emotional state affects the degree of pain one feels and how well one copes with it. But I was depressed enough that I'd cut myself a bunch a few hours earlier, and then I was extremely anxious about the idea of being admitted to the hospital, and I'd been cold and hungry for several hours. How do you think my emotional state might affect my perception of pain or my ability to cope with it?
But also, keep in mind that, while the doctor had decided only three cuts needed to be stapled, there were significantly more cuts than that. The psychiatrist that treated me while I was in the hospital (the same one that admitted me over the phone, because mine was out of town) estimated that there were about 50 cuts on each arm. I guess he felt it would be too much work to count them to get an exact number. My point is, my arms were sore. They were swollen. If the tissue hadn't been so damaged, maybe the staples would not have been so painful.
It was painful. I said, "It hurts," more than once. I'm pretty sure I cried. I recall kicking one foot against the bed at one point.
But I didn't say no. I didn't say stop. I didn't say, "I don't consent to this." Because I was pretty sure I would not be allowed to refuse treatment. All patients should have the right to refuse treatment, including psychiatric patients. For the most part, the law even says so, although there are laws that allow patients deemed dangerous to themselves or others to be involuntarily committed to psychiatric hospitals. But I had already been told I could not refuse to put on a hospital gown, that I would be tied down and undressed if I tried to refuse. I figured the same thing would happen if I tried to refuse treatment of the cuts on my arms and I didn't want to do anything to make things even worse for myself.
I felt, and still feel, as if I had been assaulted. I was physically hurt, without my consent. People stood by and watched the assault. A friend was with me at the hospital and he sat right be that bed and didn't say a word. There were nurses around. Apparently no one thought there was anything wrong with what was happening.
And there was nothing I could do. I was helpless. Powerless.
As you might imagine, all of this reminds me very much of my childhood. I was abused. No one intervened. I'm not sure anyone knew what was happening when I was a child, but someone should have known. And some people probably did know. And no one did anything. And I was powerless.
After the ER physician was done, I had three staples in my left arm and four in my right arm. I asked for pain medication. He ignored me and left the room. I asked more than one nurse for pain medication and was told they would have to check with the doctor. I don't know if they ever did check with him, but I was not given anything for pain. It was nearly five hours later, after I'd been taken up to the psychiatrist unit, before I finally received oral pain meds.
I also told her that my psychiatrist and I had previously agreed that my local hospital did not do a very good job of providing inpatient psychiatric care. He has privileges there and sees patients there because it's the hospital nearest his office, so the most convenient for him and most of his patients. But he told me that if he or a member of his family needed inpatient psychiatric care, he would not go there. He told me where he would go and agreed with me that I should seek inpatient care elsewhere if needed. The social worker said that if the doctor on call felt I needed to be admitted, she would see what she could do about arranging for me to be transferred elsewhere.
Well, I don't know what she actually told the doctor on call, but a couple hours later, the ER physician (not the psychiatrist on call, this was a medical doctor) came in and informed me I was going to be admitted. I was upset. I asked what about being transferred to another hospital and he said he didn't know anything about that, but that the psychiatrist on call, without ever actually speaking to me himself, had declared I was a danger to myself and was to be admitted for a 72 hour hold. I asked to speak to the social worker to find out why I was not being allowed to go to another hospital but was told she was not available and that maybe I could speak to her later. I never was able to speak to her later, though.
Now, I was in the ER for about eight hours altogether. It was very cold. I had to ask repeatedly for a blanket before someone finally got me one. Then the nurse came in to clean my wounds and she washed them, getting the blanket wet. So then I had a wet, cold blanket. It took a very long time to get another.
After I'd been there for several hours, I asked for something to eat. I can't eat that much at one time, since I had gastric bypass surgery, and it had been a long time since I'd eaten. I was told I could have some saltines or some graham crackers. Now, I have reactive hypoglycemia, and if I eat starchy carbs without any protein, it often makes my blood sugar drop very low and I feel like crap. Mind you, when I say my blood sugar drops very low, I mean it has been as low as 37 in the past when I've tested it. But they refused to bring me anything but crackers.
A couple hours later, after a lot more complaining, they finally agreed to order me a dinner tray. The dinner tray arrived at the same time the ER physician arrived to tell me I was being admitted and to treat my wounds. As you might imagine, that killed my appetite.
The most traumatic thing that occurred while I was in the hospital was the treatment I received from the ER physician. He announced that he was going to staple the wounds on my arms rather than suture them. I have no clue how one determines if staples or sutures are most appropriate and I did not care whether they were stapled or sutured. He said that two of the cuts on my left arm and one on my right arm needed stapled.
And then I realized he was getting ready to start stapling. I had not been given any lidocaine or anything to numb the area. I've had stitches in the past on two occasions, once when I fell and cut my lip and once when I cut my wrist (I was treated at a different hospital then, and the doctor there was extremely compassionate and gentle and caring; I remember he injected lidocaine before doing anything, including before he cleaned the cut, so that it would not hurt when he cleaned it), and both times I was injected with lidocaine and didn't have to ask for it.
Those of you that know me know I'm typically not shy about speaking up with health care providers. So I said, "Hey! Aren't I supposed to get some lidocaine or something?"
The doctor said, "It's not necessary," and started stapling.
Now, I've since been told that sometimes doctors feel it's more painful to inject the lidocaine than it is to just put in the staples, depending on how many staples are needed. I was told by the director of the emergency room that stapling wounds doesn't hurt that much (I'm not sure how many staples she's had put in her body, though). And I acknowledge that the perception of pain is sometimes not just a physical thing but that one's emotional state affects the degree of pain one feels and how well one copes with it. But I was depressed enough that I'd cut myself a bunch a few hours earlier, and then I was extremely anxious about the idea of being admitted to the hospital, and I'd been cold and hungry for several hours. How do you think my emotional state might affect my perception of pain or my ability to cope with it?
But also, keep in mind that, while the doctor had decided only three cuts needed to be stapled, there were significantly more cuts than that. The psychiatrist that treated me while I was in the hospital (the same one that admitted me over the phone, because mine was out of town) estimated that there were about 50 cuts on each arm. I guess he felt it would be too much work to count them to get an exact number. My point is, my arms were sore. They were swollen. If the tissue hadn't been so damaged, maybe the staples would not have been so painful.
It was painful. I said, "It hurts," more than once. I'm pretty sure I cried. I recall kicking one foot against the bed at one point.
But I didn't say no. I didn't say stop. I didn't say, "I don't consent to this." Because I was pretty sure I would not be allowed to refuse treatment. All patients should have the right to refuse treatment, including psychiatric patients. For the most part, the law even says so, although there are laws that allow patients deemed dangerous to themselves or others to be involuntarily committed to psychiatric hospitals. But I had already been told I could not refuse to put on a hospital gown, that I would be tied down and undressed if I tried to refuse. I figured the same thing would happen if I tried to refuse treatment of the cuts on my arms and I didn't want to do anything to make things even worse for myself.
I felt, and still feel, as if I had been assaulted. I was physically hurt, without my consent. People stood by and watched the assault. A friend was with me at the hospital and he sat right be that bed and didn't say a word. There were nurses around. Apparently no one thought there was anything wrong with what was happening.
And there was nothing I could do. I was helpless. Powerless.
As you might imagine, all of this reminds me very much of my childhood. I was abused. No one intervened. I'm not sure anyone knew what was happening when I was a child, but someone should have known. And some people probably did know. And no one did anything. And I was powerless.
After the ER physician was done, I had three staples in my left arm and four in my right arm. I asked for pain medication. He ignored me and left the room. I asked more than one nurse for pain medication and was told they would have to check with the doctor. I don't know if they ever did check with him, but I was not given anything for pain. It was nearly five hours later, after I'd been taken up to the psychiatrist unit, before I finally received oral pain meds.
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