Where Have I Been?

I haven't blogged much lately.  I'm not really sure why.  I've been busy and I've had a sinus infection that just won't go away.  And I've had some stress.  Really, being sick is almost always stressful for me, but I've had other stress, too.  Like, Isaac was bitten by another dog at a dog park.  That's a whole separate post, but it was really stressful for me.  More stressful for me than for him, I'm pretty sure.

This sinus infection has been going on for a good month now and I'm just beginning to feel better.  It really triggered my PTSD and I ended up very emotional and not sleeping much.  At one point I was prescribed prednisone for the inflammation and it was higher dose than I've been on in the past and I had horrible side effects from it.  After only two doses, I was crying frequently and having flashbacks and nightmares and my anxiety was through the roof.  After the third dose, it finally occurred to me that what was happening might possible be related to the meds I was on for the sinus infection.  So the prednisone was discontinued and I'm feeling less emotional but still not quite back to normal.

Also, when I saw my rheumatologist back in March, she increased my gabapentin.  I think it is just now finally starting to decrease my pain, but it is causing a lot of blurred vision and that is really driving me nuts.  I am thinking I am not going to be able to stay on the higher dose.  I just don't think I can tolerate this blurriness. 

But I do want to get back to blogging and I have things I want to blog about, so hopefully I'm back now.

Do You Qualify for a Psychiatric Service Dog?

Service dogs helps people with all kinds of disabilities, including psychiatric disabilities like post-traumatic stress disorder, bipolar disorder and schizophrenia. I have post-traumatic stress disorder and received a service dog, a yellow lab named Isaac, a little over a year ago. Not everyone with a psychiatric condition qualifies for a service dog, however. To qualify for a psychiatric service dog, you must be disabled by your condition and there must be tasks a dog can be trained to do to mitigate your disability.

Are You Disabled?

To qualify for a service dog, you must be disabled according to the definition given in the Americans with Disabilities Act (ADA), which says a disability is a condition that significantly limits your ability to perform basic life activities, like seeing, hearing, walking, thinking and communicating. PTSD causes me to have significant difficulty thinking and communicating at times. Note that you might qualify for Society Security disability and still not be disabled according to the ADA. On the other hand, you might be able to work and therefore not qualify for Social Security disability but still be disabled under the ADA definition and therefore still qualify for a psychiatric service dog. Talk to your doctor or therapist if you aren’t sure if you are disabled according to the ADA definition.

Can a Dog Be Trained to Do Tasks to Mitigate Your Disability?

Think about what things you are unable to do for yourself because of your psychiatric condition. Some of the things I was unable to do because of my PTSD included remembering to take my anxiety medication when I have an anxiety attack (normally I am able to take my medication on my own but during an anxiety attack, I can’t think clearly and just forget to take it unless someone reminds me) and walking into a dark room. Your doctor or therapist can help you make a list of things you can’t do on your own.

Once you have a list of things you cannot do for yourself, think about how someone else (human, dog, robot, whatever) could do them for you or help you do them. For instance, my service dog is trained to bring my medication to me when I start to have an anxiety attack (he knows to do that when he sees signs that I am getting increasingly anxious, like crying, rocking back and forth, clenching my fists, and breathing harder than normal) and to turn on lights. If you’re not sure if a dog could be trained to do the things you need done, talk to a dog trainer about that.

Keep in mind the fact that a service dog must be trained to do specific tasks to mitigate your disability. According to the U.S. Department of Justice, providing emotional support or comfort isn’t considered a trained task. For instance, when I feel anxious, petting Isaac makes me feel calmer. That’s not a trained task, though. If he wasn’t trained to do specific tasks to mitigate my disability, like bringing me medication and turning on lights, he would not be a service dog.

Other Things to Consider

In order to qualify for a psychiatric service dog, you need to be able to care for a dog, of course. Can you afford the cost of dog food, toys, veterinary care and other supplies? Does your psychiatric condition make it difficult to handle daily tasks like feeding, walking and grooming a dog? If you need to be hospitalized for a short time, who would take care of your service dog?

If anxiety is part of your condition, how will you feel going out in public with a service dog? People often stare at people with service dogs and sometimes ask personal questions or make rude comments. How will you handle any access disputes? If an employee tells you that you can’t bring your dog into a restaurant or store, will you be able to remain calm? You can discuss these issues with your therapist.

Urgent Care, Take Two

I went back to urgent care today.

Isaac is getting really used to that place.  Ugh.

I just wasn't feeling any better.  Actually, I was feeling worse.  When I went to urgent care on Thursday, I had a sore throat and my ears hurt.  I felt achy all over, which is typical for me because of the fibromyalgia, but it is a slightly different kind of achy along with chills when I am sick.  I was also coughing just a little.

I should have gone back yesterday, Saturday.  By Saturday  night, after six doses of oral antibiotic plus the ear drops, my ears and throat still hurt, plus I was coughing, a nasty, rattling cough, complete with icky phlegm coming up much of the time.  And when I blew my  nose, it was bloody.

Why didn't I go?  Well, being sick really triggers a lot of my anxiety and PTSD.  I talked briefly to a friend, who said he thought they probably wouldn't change the antibiotic because I hadn't been on it that long and it sounded like he thought I shouldn't go back. 

And somehow I fixated on that and started thinking I shouldn't go.  It would be a waste of money.  It would be a waste of time.  I would just be bothering the people there.  I should quit being such a baby.  I was just being lazy.  I had stuff to do.  It would be bad to go back.  I would be bad if I went back.

I knew I was sick and that the  antibiotic wasn't working.  But I felt like I had to choose between continuing to feel very ill or going to urgent care and feeling very guilty and angry at myself for doing something wrong.  I know that doesn't make sense.  I know that's not rational. But that's my disability.

And I know that's not what my friend meant.  I also know he isn't a very medical kind of person and he had no clue whether or not they would switch antibiotics.

But sometimes my mind just grabs onto something and it spirals like this and won't let go.  I used to do that a lot.  It's much better now.  I mean, it happens less often now.  Much less often.  But it's still bad when it does happen.

So I didn't go back to urgent care yesterday.

This morning, I went.  When I woke up, in addition to all the things that were wrong yesterday, I also felt like my head was going to explode.  The sinus pressure around my eyes was tremendous.  My chest also felt  heavy when I tried to take a deep breath.  I got worried.  So I went.

There was a different doctor there today.  He said I had a sinus infection but that my lungs sounded OK.  He changed the antibiotic and told me to get an OTC decongestant.

I should have gone yesterday. 

Update on the Dental and Health Stuff

The dental work went well.  The most painful part of the procedure was injecting the novacaine.  A couple places where the needle had to go, it hurt.  But then I didn't feel anything during the procedure.  And it didn't take that long.

There were a couple moments where my PTSD was triggered a bit.  My jaw was starting to ache from having my mouth open so wide and the feel of the dentist's hand on my face was triggering.  I was able to push it away, to force myself back to the present.

I slept much of the afternoon.  Nothing about the procedure should have made me tired, yet I felt wrung out.  Whiskers curled up beside me and we slept off and on most of the rest of the day.

That was Wednesday.  Thursday I felt a little tired still but got a lot of stuff done.  Then Thursday night, I had nightmares.  I woke up for a while, managed to go back to sleep, had more nightmares.  Finally dragged myself out of bed, still tired, but not wanting to even try to sleep anymore.  And then Friday night was the same.  I'm guessing the nightmares were triggered by the dental procedure.  Hopefully I will be able to sleep better tonight.

The dizziness continues.  It seems to get worse in the evenings for some reason.  That's really the only pattern I've noticed.

I have an appointment later this month with an ENT.  Hopefully he has some ideas about it.

The Difference

In a few months, Isaac will have been with me for three years.  I was thinking today about the difference he's made in my life.

I was hospitalized for five days about a week after Isaac came to live with me.  I haven't been hospitalized since, despite some pretty stressful stuff that's happened over the past three years.  The last few weeks, I've been feeling more anxious than I had been for several months, but I'm still handling the anxiety better than I used to.  It's been quite a while since I've had a full blown anxiety attack.

Recently I've also been having a bit more pain from the fibro, but that is also much better managed than it was 18 months ago.  Eighteen months ago I could not lift a gallon jug of milk.  Eighteen months ago I could not sleep through the night because pain woke me up every time I turned over or changed my position.  Oh, I still have trouble sleeping, but at least it's usually not due to pain.

I'm  more active now than I've ever been in my life, I think.  Isaac and I hike an average of three miles a day, almost every day.  Some days more.  And I'm sure that has been good for my health.

I realized today that, while I certainly do still have some anxiety and PTSD stuff going on, some of it has greatly improved.  For instance, I used to be afraid to take a shower at night, especially if I was home alone.  And of course, I live alone, unless you count Whiskers and Isaac.  That meant I had to plan my schedule carefully to make sure I could get a shower while it was still daylight out. 

One of the things I wanted a service dog to do was to sit in the bathroom with me while I showered so I would feel safer.  Well, that's not exactly a task, so I guess I wouldn't have to have a service dog for that.  A pet dog could do the same thing.  But that's one of the things I was hoping would help me when I got Isaac.

And it has helped.  He rarely sits in the bathroom with me while I bathe these days, but he often sits in the doorway or just outside the door (which I leave open since I live alone and cats and dogs do not like the bathroom door to be closed).  But anyway, the fear of showering when it was dark outside just kind of went away without me even noticing it leaving.  I just realized today that I can't remember the last time I wasn't able to shower because it was dark out and I was too scared.

That might seem like a little thing.  But it's a big thing when you can't shower. 

Geez, I remember shortly before I got Isaac, when I was still living in my old house, one night when I really really needed to pee but was afraid to walk down the dark hallway into the dark bathroom to do it.  I remember at the time, I was thinking how great it would be when I had my service dog and he could go ahead of me and turn on the bathroom light. 

And that might seem like a silly little thing, being afraid to go into the dark bathroom, but I was really terrified and I really had to pee.  I mean, I was thinking of what alternatives might be available to me, like could I find a bucket under the kitchen sink and pee in that and then empty it in the morning?  Or could I pee in the kitchen sink?  I mean, it's a drain, right?  I know, that's gross, but that's how bad the PTSD-related fear of walking into a dark room was. 

In case you're wondering, I did finally make it into the bathroom.  I did not pee in my sink.

Anyway.  It's been a very long time since I had trouble getting to the bathroom to pee.  And that is a huge difference.

Acupuncture

Yesterday I had an appointment with a doctor that is a chiropractor and also does acupuncture.  I've considered acupuncture for a long time but since there was no guarantee it would help me and my insurance doesn't cover it and it's expensive and I am fairly poor, I never tried it until now.

But I decided recently that I had to do something different.  Not only for the fibro pain, but everything else, too.  This UTI.  This weird gum infection that finally seems to be gone, but that I dealt with for so many months.  My PTSD.  I've been having more trouble sleeping lately, feeling more anxious and depressed, and at first I attributed that to tutoring more hours, but I'm not sure that's all of it.  And I felt like I needed to do something and I thought of calling my psychiatrist for an appointment (I'm not scheduled to see him again until March, I think), but then I thought, what is he going to do?  Prescribe more medication?  And I don't really want more psych meds.

A couple friends have tried to talk me into seeing a therapist.  But I don't want to.  I think it might help me, if I could feel safe enough doing so.  But it doesn't feel safe.  It's not just that I don't want to, I actually ended up having a pretty bad anxiety attack last night just talking about the possibility with a friend.

It feels to me like the fibro is very connected to the traumatic experience at the hospital a couple years ago.  Maybe some other stuff is related, as well.  It's hard to know.  How do you diagnose that? 

So I talked to another friend, a friend that happens to be a therapist but that I knew would also get it when I said I felt like there were trauma stuck in my body and that I thought past trauma was causing my fibro.  We talked, and I did some thinking, and then I decided that I have to do something.  I can't keep doing nothing and hope that things will somehow change.  That makes no sense.

So I made an appointment with a massage therapist.  I made an appointment with an acupuncturist.  And some other stuff.

But.  Acupuncture.  I love the acupuncturist.  She is fantastic.  And I felt great after my first session.  It was weird.  The first thing I noticed was that my vision seemed clearer.  It was like things were sharper, brighter, more in focus.  But my pain seemed better, too.  I came home from the appointment and took a nap and it was a great nap.  I woke feeling really refreshed.

Then later I had a conversation with a friend about seeing a therapist and had a big anxiety attack.  But still.  The acupuncture seemed to help.

The acupuncturist loves Isaac.  She said she'd like to have a therapy dog in her office some day.

Isaac was great during the appointment.  He lay down beside the bed I was on and took a nap.

To the Emergency Room Physician that Assaulted Me

I am writing this letter because I hope it will help me heal.  I don’t really expect you to care about how your actions have affected me.  If you were the type of person that cared about things like that, you would not have assaulted me in the first place.  I used to be a social worker and I worked in a batterers’ intervention program, so I know, personally and professionally, how unlikely it is for abusers to actually change their behavior.  I wish you would at least take a moment to think about how much damage your abusive behavior has caused, I wish you would change, but I don’t expect you to.

You saw me in the emergency room a little over a year ago.  It was November 23, 2012.  I came to the ER because I’d cut myself on both forearms with an exacto knife.  I suffer from major depression and PTSD, which I explained to ER staff.

I had about 50 cuts on each forearm.  My arms were swollen and sore.  Here is a picture for you, in case you’ve forgotten how they looked.  This was taken the next day.

You put seven staples in my arms, with no anesthetic, no pain meds of any kind.  I asked for lidocaine before you started, complained of pain during the procedure, and requested pain medication repeatedly afterward, only to be ignored by you and by other staff people.  I didn’t try to refuse treatment because, while I understand I should have had the right to do so, I was afraid that right would not have been respected.  None of my other rights were being respected, after all.

The nurse had previously threatened to have me put in restraints when I said I didn’t want to put on a hospital gown.  There was no reason to put on a gown, you could have easily treated my arms with me fully dressed.  Threatening to put someone in restraints when they have a history of being tied down and raped is unbelievably horrible, but that’s what the nurse threatened to do to me, just because I wanted to keep my clothes on.  So I figured if I tried to refuse to allow you to staple my arms with no pain medication, I’d find myself in restraints while you did it anyway.  

I knew how emotionally upsetting being restrained would be.  “Upsetting” really doesn’t describe how it would feel.  It would remind me of what my father did to me when I was a child.  I would probably have a flashback.  I would be terrified.  And I figured no one in the ER would help me if that happened, since they weren’t helping me so far.  So I felt I had no choice but to allow you to staple my arms.

That’s not really consent, though.  If you threaten to hurt someone if they don’t comply, and so they comply, that isn’t consent.  You stapled my arms without my consent.  It hurt.  It was an assault.  You assaulted me right there in the emergency room and no one did anything about it.

Do you have any idea how that has affected me?  I bet you don’t.  But I’m going to tell you.

See, being assaulted can affect someone for a very long time.  It’s been more than two years since you assaulted me and I still have nightmares about it frequently.  Before you assaulted me, I was having nightmares about my father abusing me as a child a few times a month.  After you assaulted me, I began having nightmares much more often.  Sometimes the nightmares are about being in a hospital and sometimes they are about my father assaulting me, but I have them several times a week now instead of several times a month.

I have flashbacks, too.  I have flashbacks of you stapling my arms, only it goes on and on, and I can’t make it stop.  It’s terrifying and it feels like it’s happening now.  My arms hurt, even though I can see there are no wounds on them now.

Since you assaulted me, I have found it very difficult to seek any type of medical care.  I don’t trust doctors anymore.  Oh, I realize there are many good doctors out there, many compassionate, caring physicians.  I know most are not assholes like you.  But after being assaulted by a doctor, I find myself afraid that it might happen again.  So I don’t always get medical care now, even when I need it, because I am so afraid.  That’s your fault.  Before you assaulted me, I was never afraid of seeking medical care.

About six months after you assaulted me, I accidentally cut my finger while chopping an onion.  I am pretty sure it needed a couple stitches.  It bled for 15 hours.  I was too scared to go to the ER, though.  I was afraid they would refuse to give me anything for pain when they stitched the cut and I was afraid they would think I cut myself on purpose and insist on admitting me to a crappy psych ward involuntarily.  So I just bandaged it up tightly and stayed home.

When I had a mammogram that found something abnormal in one breast, I delayed having it biopsied for a while because I was afraid of going to the hospital.  I was afraid I’d be in a lot of pain after the surgery and that they wouldn’t give me pain medication.

I don’t know if I’ll ever feel safe going to an emergency room again.  I hate to allow you to have so much power over me, but the truth is, you are in a position of power and you should use that power wisely and carefully.  You should take care not to do harm.  You certainly shouldn’t be assaulting patients that come to you for care.

The Terrible, Horrible, No Good, Very Bad Day

That was my day yesterday.

Now, I have to say, I've had worse days in the past.  If this was as bad as it ever got, well, I'd be doing OK.

But it was still a bad day.  The worst I've had in a while.

It started at 6:00 am, when Isaac woke me, wanting to go out to pee.

It had turned cold overnight and my fibro had kicked up a few notches.  It was not the most fibro pain I'd ever felt, not even close.  But it was more than I've felt in quite a while.  If the worst ever is a 10, and last winter I was frequently at an 8 or 9, well, yesterday was maybe a 6.  But for most of the summer, it's been maybe a 2 at most.  So it was a bit of a shock.

The bottom of my left foot hurt, a lot.  How weird is that?  Other places hurt, too, but especially the bottom of my left foot.  Fibro is like that.  Hurts in weird places.

Isaac and I were supposed to go to the nursing home and then this guy I've been seeing for a little while was supposed to come over.  I thought about cancelling everything.  Staying home instead.  But I wanted to go to the nursing home and I wanted the guy to come over.  So I pushed myself to get up.  I took a long hot bath, which always helps.

And Isaac and I went to the nursing home.  It was a good visit.

I was feeling a little anxious.  I thought it was because of the fibro.  I took some anxiety meds and tried to ignore it.

The guy I've been seeing came over.  We were, let's say, making out a bit.  And something got triggered.  I had a flashback.  This has happened to me before but not in a long, long time.  I'd figured it could still happen again some time but I guess I was hoping it wouldn't.

I wanted to be alone.  I told the guy to leave.  I took a double dose of my anxiety meds and went to sleep.  And I slept off and on the rest of the day, and all night, only waking up to take Isaac out and sometimes to eat something.

I finally pulled myself out of bed this morning.  I took a hot bath and went to the grocery store to pick up a few things and now I'm trying to finish an article I meant to finish yesterday but ended up not even working on at all.

I'm disappointed it was such a bad day yesterday.  I'm kind of pissed about the flashback.  Not at myself and not at the guy, just at the circumstances.  At the same time, I feel I'm handling it pretty well, as well as I can, and that has to count for something.

I hope to take Isaac for a long walk later today before I have to go tutor.  He's antsy after being kept inside all day yesterday.  And hopefully today will end up being a better day.

Response to Stress

As you might imagine, this is a pretty stressful time for me.  My symptoms of PTSD and DID always get worse, a lot worse sometimes, during times of increased stress.  Lucky for me, much of the time my life is fairly low in stress.  That's one of the reasons I'm not able to work at a regular job or to work more hours even at my super easy work-at-home job.  That increases my stress level and my symptoms get worse and then my symptoms are too severe to work at all.

So this is a stressful time.  I'm not sleeping well.  And I'm... it's kind of hard to describe.  Forgetful, disorganized, disoriented, almost confused at times.

This evening, I am trying to bake some lemon zucchini bread.  A friend sent me the recipe and it sounded really yummy.  I hope it turns out OK but I'm not sure it will.  I have had all sorts of trouble just trying to mix up the batter.

First, I started measuring the baking powder with a tablespoon instead of a teaspoon.  Luckily I caught my mistake, but since there was no way to remove the excess baking powder from the flour and salt already in the mixing bowl, I had to toss that out and start again.

Then I was unable to find the brand new bag of Splenda I am positive was in my kitchen cupboard.  I remember buying it a while back because it was on sale and then I got home and realized I had more on hand than I thought I did but figured oh well, it would keep.  So I should have had a partial bag and a full, unopened bag.  Well, the full, unopened bag has somehow disappeared.  I don't know how.  I searched all my kitchen cupboards in case I somehow put it in a different cupboard, not with my other baking supplies, but it is no where to be found.  And I am sure I did not somehow use up a whole bag of the stuff without remembering doing so.  Luckily I had just barely enough in the other, already opened bag.

I did find a coffee cup in the cupboard with my baking supplies that I have no recollection of ever seeing before.  I don't know how it got there.  Or when it got there.  I mean, unless some fairy or elf sneaked into my kitchen, stole my Splenda and left a coffee cup in its place, I must have put it there.  But I don't recall buying it or ever seeing it before.  How weird and disconcerting is that?  That's actually something that some people with DID experience on a frequent basis, but I don't.  Never have.  Weirds me out.

I was supposed to add the Splenda to the eggs in a separate bowl but somehow ended up adding it to the other dry ingredients instead.  Oops.

I squeezed the juice from two fresh lemons and adding the correct amount of lemon juice to the batter.  I was supposed to save the rest of the lemon juice to use to make a glaze for the top of the bread.  But I poured it down the sink instead.  Hopefully I can wring a little more juice out of those cut lemons.  Luckily I hadn't thrown them out yet.

So I got the batter all mixed up and it seemed too thick to me.  I read through the recipe a couple of times, trying to see if maybe I forgot to add something liquid to it, but I think I got it right.  Of course, I could have ended up putting too much flour or something in it.  Who knows?  I added a little bit more milk so it would be what I thought would be the right consistency.  I've never made zucchini bread before but I've made banana bread and applesauce bread and quick breads like that, so I figured the batter for the zucchini bread should probably be similar in consistency.

I guess we'll see how it turns out.  I'm trying not to stress about it.  I don't like it when my symptoms are bad like this.  That in turn can stress me out more.  So I'm trying not to worry about it.

Disabled Veterans

It's Memorial Day and I am remembering the vets that make it back from the war but live the rest of their lives with disabilities caused by the war.  And I want to tell a story about a vet I had the opportunity to talk with the other day.

He joined the service soon after high school.  He hoped to make a career of it.  He is a very bright man and had a highly technical job in the service.  I'm not providing any identifying details in order to protect his privacy, so I won't say exactly what he did, but it was something requiring a lot of intelligence and skill.

He'd been in the service for 10 years when it happened.  He was in Iraq.  He was in a vehicle with nine other servicemen when an explosion occurred.  Eight of the 10 people in the vehicle were killed.  He and one other man survived, with serious injuries.

He carries a lot of survivor's guilt, partly because he was initially supposed to sit in a different seat in the vehicle but for some reason ended up switching seats with another guy.  The other guy died.  If he'd been in the seat he was supposed to be in, he would have died, too.  This was 15 years ago and he got all choked up telling me about it.

He received a medical discharge.  He came back to the states with physical injuries, requiring lengthy hospitalization.  He also had (still has) PTSD, although apparently the VA psychiatrist only diagnosed that about a year ago.  How could anyone live through that experience and not have PTSD?  He still thinks about it every day.  He still cries about it.  He still has nightmares.

Despite having severe PTSD and lasting physical disabilities, the VA only finally declared him disabled and awarded him disability pay a year ago.  It took 14 years for him to get disability.  For 18 months of those 14 years, he was homeless, living on the street.

His wife left him shortly after he came home from the war.  She said he wasn't the same man he used to be.  This was not what she signed up for.  Well, gee, I don't think it was what he signed up for, either.

After his wife left and he was disabled and living in extreme poverty, he became depressed.  Well, duh.  Who wouldn't?  He attempted suicide multiple times.  Obviously he was not getting good mental health care - the VA psychiatrist couldn't even figure out that the had PTSD.

This would be a terribly sad story even if the guy wasn't a veteran.  But he is a vet.  He didn't become disabled in an accident.  He wasn't just born this way by some twist of fate.  He became disabled fighting in a war that our government, on behalf of all of us, felt was so important that it was worth risking lives.  He agreed to take that risk, to sacrifice his health and maybe even his life, for other people, and for a principle.

I am a pacifist.  I am opposed to war.  I don't think we ought to be fighting wars.  What if they threw a war and nobody came?  I think we should all refuse to come.

But that is not the society in which we live.  We live in a society in which we send young men and women to war.  To fight for us.

And then when they come home disabled, we don't care for them.  I find that appalling.  I do not support war but I do support the troops that fight for something they believe in.

This guy lost his wife, he suffers pain every day, he is disabled, he has PTSD, and we allowed him to live on the street for 18 months.  Think about that.  In a Midwestern city, in the cold winter, we - this society, which includes all of us - felt it was perfectly OK for him to sleep in a doorway, on cold concrete, in pain, barely able to walk, having nightmares of an explosion that killed eight of his buddies when he did manage to fall asleep for a bit.

How is that OK?  How is it that we can allow that to happen?

It's easy to say well, that's not really my responsibility, it's not that I think it's OK but what am I supposed to do about it?  I don't work for the VA, it's not up to me to decide who gets disability.  What am I supposed to do, anyway?  Invite homeless vets into my home to live?

But really, it is my responsibility.  It's is the responsibility of all of us.

If it's not OK with me, I  need to do something about it.  If I just passively accept it, and allow it to happen, then it must really be all right with me.

What am I going to do about it?  I don't know.  I have no idea what there is to do about it.  But I'm gonna find out.

What about you?  Is it OK with you?  And if it's not, what are you going to do about it?

May Is Mental Health Month

So I'm told that May is Mental Health Month. Most of my readers probably already know I have a mental illness, post-traumatic stress disorder (PTSD) and that I have a service dog named Isaac that helps me cope with that disability (not everyone with PTSD is disabled by it but I am).

What many people probably don't know is that I have another mental illness, dissociative identity disorder (DID), as well. I decided since it's Mental Health Month, sharing that might be a good thing.

I think talking about mental illness, and mental health, is the first step. The first step to a society in which there is much less stigma associated with mental illness, and much less discrimination, a society in which people that go to the ER for a mental illness-related problem are treated with the same dignity, compassion and respect as those that go to the ER for a physical health problem (which sure ain't the case now), a society in which people with mental illnesses aren't told to just "get over it" or called "selfish" or "weak," a society in which treatment for mental illness is much more available and affordable. None of that will ever happen if we don't even talk about it.

Why don't I post much, or talk much, about having  DID?  I guess mostly because, as open as I am about many things, I don't like to seem nuts anymore than anyone else does.  For those not familiar with DID, it used to be called multiple personality disorder.  Well, something similar was called multiple personality disorder, anyway.  When the name was changed, the diagnostic criteria was changed a bit, too.  But most people know very little about DID and some people don't even believe it's a real disorder and many people think it must mean someone is really, really crazy.  So I don't talk about it much.  But I probably should.

Anyone else want to share anything?  Please feel free to leave comments.

Red Lights and Melatonin and Sleep and Stuff

I recently was reading a book about fibromyalgia and in it, the author was talking about sleep and melatonin and how light affects the production of melatonin.  You've probably heard of melatonin.  It's a hormone naturally produced by the body, though you can also buy it as a dietary supplement.  The supplement is supposed to help you sleep and to help with jet lag or to help people that work odd shifts by helping to re-adjust your body clock.

Well, apparently during the daytime, during daylight hours, your body produces almost no melatonin.  Once the sun starts going down and it begins to get dark out, your body starts making a lot more melatonin and this makes you get sleepy.  However, indoor lighting can affect the production of melatonin, so if you keep the lights bright inside even after dark, you won't get tired.  Or maybe you will get tired, but you'll have trouble sleeping. 

According to the book I was reading, even a small amount of light can interfere with the production of melatonin, so it's important to sleep in a dark room.  Even the light from a computer or television set can interfere with a good night's sleep, because it interferes with melatonin production.

Well, I have heard that you're not supposed to watch television or use your laptop in bed.   That's all part of what's called "sleep hygiene," along with stuff like going to bed and getting up at the same time every day, sleeping in a dark, cool, quiet, comfortable room, not doing anything other than sleeping or having sex in your bed (I'm not sure why they always make an exception for sex, maybe just because some people are so... conservative that the idea of having sex anywhere but the bed might shock them?), etc.  But I'd never heard that it had anything to do with melatonin production.

And I pretty much ignore the whole "sleep hygiene" thing because when I try getting up at the same time every day, even if I haven't slept at night, all that does is cause me to be exhausted.  It doesn't help me sleep the next night.  I know from experience.  I don't sleep in a dark room because I can't, because I'm scared to go to sleep in a dark room due to my PTSD.  For the same reason, I have trouble sleeping in a quiet room.  I like listening to music or a movie or something.  And while I think my bed is a fine place for having sex, I see no reason to confine those activities to the bed... oh, I guess I'm going a bit astray there.  Sorry.  Anyway, I very rarely even sleep in my bed.  I usually sleep on the couch.  I feel much safer there.

Anyway.  I'd never heard all that about melatonin production and light at night, so I did some research.  I found an article published by Harvard Medical School that said the amount of light produced by just two average nightlights was enough to significantly impact melatonin production and interfere with sleep.  According to the Harvard article, if you need to have a light on at night, it's best to use a red-tinted light bulb.  For some reason, that has the least impact on melatonin production.  Blue light, on the other hand, is the worst.

So I decided to experiment.  Back at Christmas time, I really enjoyed the lights on the Christmas tree.  They were bright enough that I was able to turn out all the other lights in the house, but I think they were dim enough that I was able to sleep better.  I had actually considered buying a string of lights of some kind and putting them up somewhere in my house after Christmas was over.

So I decided to do that now, but with a string of red lights.  Red, I have to say, is not my favorite color.  I'd rather have white lights.  Or yellow.  Or blue.  Or green.  But Harvard says it should be red.  So red is what I got.  They were only $7 from Amazon.  They arrived today.  I think they look a little more pinkish than red, which I'm not that fond of, either, but if they actually work, I think I'll decide I love them.

I'm not sure what I'm going to do with them.  Right now, I have them draped over a bookcase.  If I decide they work and I like them, I'll do something a bit more decorative with them.  I thought maybe I'd buy a grapevine wreath and wrap the string of lights around it and hang it on the wall.  Something like that.  If I do, I'll post a picture.

Sometimes I Hate Night

I hate night a lot lately, actually.

I cope with the pain pretty well during the day, for the most part.  I hurt, but I can deal with it.  I can ignore it.  I can distract myself.

At night, I can't.  It's hard to sleep because of the pain, but I'm tired, I can't keep myself busy and distracted from the pain all night.

And then that pain, that unrelenting pain, triggers memories of being in the emergency room and of my childhood, and it's hard to cope with those memories at night when I'm tired and in pain.

And it's lonely.  I think of all the people I know, think of calling someone, and think of all the reasons I shouldn't bother them.  Plus, I don't know what I'd say if I did call someone.  They'd ask what they could do, how they could help, and I don't know.  I don't know what I want or what I need.

And the night seems so long like that.

More Thoughts on the Abyss

The post I wrote recently about the abyss was inspired by a conversation with a friend.  I asked him how he'd gotten through a very dark time in his life without being totally screwed up.  Of course, maybe he is more screwed up than I realize.  I think I am more screwed up than he realized.  But what he told me was that he stood at the edge and looked into the abyss and knew he couldn't stay there long enough for it to look back into him.

I was thinking about that today and I think he was old enough and wise enough when he experienced trauma that he was able to recognize the abyss when he saw it and to know he could not stay there long.  I, on the other hand, was not old enough or wise enough to recognize it or to know not to linger.

Do you know the story of Persephone?  I talked about Persephone in that post.  But there are really two stories about Persephone, although many people only know one, the newer one, although both are really old.  Persephone is an ancient Greek goddess, the daughter of Demeter and Zeus.  In the earlier myth, Persephone went into the Underworld because she heard the cries of the dead and she went to comfort them.  In the newer, patriarchal version, she was kidnapped by Hades and taken there by force.  Demeter, the goddess of the harvest, went in search of her daughter and rescued her.  But because Persephone had eaten three pomegranate seeds while she was there, she has to return to the Underworld for three months each year.  That's when we have winter.  Demeter grieves for her daughter then and will not allow anything to grow.

I prefer the older version of the story, in which women have more power and aren't subject to the control of men who abduct and assault them.  But the newer version was more what I was thinking of when I first wrote about the abyss.  Because I did not choose to go there.  I was taken there, by force.

The Abyss

"I looked into that abyss," a friend said to me, "and I knew I didn't want to stay there long enough for it to look back into me."

Well, I didn't just look in.  I fell in, head first.

I settled in.  I dropped anchor.

No, I didn't stay, not forever.  But long enough for the darkness to know my name.

I made my home there for a while.

Like Persephone, I stayed too long.

My mother did not come to rescue me.  I reached down and I saved myself, as much of myself as I could find.

But like Persephone, I'd eaten the pomegranate seeds.  I must return at times to that darkness.  I stayed too long to ever fully leave.

Taking Down the Tree

Last night I started taking the ornaments off my Christmas tree and today I packed them all away.  I realized, though, that I didn't really want to take down the tree.

I have found that the lights on the tree provide just the right amount of light at night so I can sleep without having the overhead light on.  Due to my PTSD, I often have trouble turning off all the lights at night.  Even if I am feeling all right and am able to go to sleep with the lights off, if I have a nightmare and wake up in the dark, it's really scary for me.  Isaac can get up and turn on a light for me if that happens, which helps.  But most nights, I have to sleep with a light on.

The light makes it hard for me to fall asleep, though.  I end up with my arm over my eyes or my pillow halfway over my face, because the light is too bright and it bothers me.

The lights on the tree have been perfect, though.  I can turn off the overhead light and it's dim enough to sleep but there is enough light that my PTSD doesn't get triggered and I feel safe and there's no panic if I wake up in the middle of the night. 

I think I need to get some sort of a small lamp that will provide about the same amount of light as my tree.  I'll have to look for one.  In the meantime, I decided to leave my tree up for a couple more days.

Body Memories

I think I've written before about body memories, more specifically about having the sensation of my arms being stapled like they were in the emergency room.  Body memories seem to be pretty common among people with PTSD.  I tried to do some research on how to deal with them but could not find much.  So I ended up writing an article on the subject. 

How to Deal with Body Memories When You Have PTSD

A Year after the Hospital

I've made it through Thanksgiving.  I was a little worried about how I would do since last Thanksgiving ended up so bad for me.  Last year, I ended up in the hospital.

Tonight I was reading the posts I wrote about my experience in the hospital last year.  Actually, the posts about it were written in March; I wasn't able to talk much about it until four months after the fact.  I was too traumatized to talk much about it for a while.

I was reading the post in which I explained how I left the hospital in significantly worse shape than I was in when I was admitted.  I was still in worse shape in March, four months later.

I am better now, a full year later, than I was in March.  But you know, I am still worse now, a whole year later, than I was when I was admitted.

Honestly.  Seriously.  The damage done in that hospital in just five days was that severe.

Prior to that hospitalization, I was having nightmares three or four times a month.  Four months after the hospitalization, I was having nightmares four or five times a week.  Now, a whole year later, I still have them at least three times a week.  Often, the nightmares are about being hospitalized, although some are about my childhood or other things.

I am sleeping better now than I was in March.  I've always had a lot of trouble sleeping, but that is probably back to how it was before the hospitalization.

I have flashbacks to the ER doc putting staples in my arms without any pain meds.  I don't have them as often now as I did back in March, but I still have them occasionally.  I hadn't had any flashbacks of the childhood abuse in a long time prior to the hospitalization.

I'm a lot less anxious than I was in March, but still have more anxiety and have to take more medication for it than I did before the hospitalization.  I take a medication for Vistaril as needed for anxiety and used to take 25 mg when I needed it, which was usually a couple times a week.  That was before the hospitalization.  After the hospitalization, I was taking Vistaril two or three times a day, usually.  Now I'm down to taking it four or five times a week, usually, but I'm also on a higher dose.  I now have to take 50 mg, twice the amount I used to take.

My pain is significantly worse.  I don't know how much of that can be attributed to the hospitalization, but I think the increase in stress and anxiety has made the pain worse.  Also, before the hospitalization, I was receiving treatment for my back pain from a specialist at the Cleveland Clinic and I was taking Vicodin as needed for the pain.  Since the hospitalization, I've had a very difficult time seeking medical care for anything.  I haven't seen the specialist since then and I ran out of Vicodin about a month after the hospitalization and am now on Tramadol, which does not seem to work as well.

I also have "phantom pains," what some people refer to as "body memories," where I feel like my arms are being staples or like the staples are still there, even though those wounds have long since healed.  I don't have those pains as often now as I did back in March, but I still have them.

I am more comfortable seeking some types of medical care now than I was back in March, but I had no problem seeking care when I needed it before the hospitalization.  Over the past few months, I've been able to see my primary care physician for a urinary tract infection and for strep throat.  I even went to the dentist, which is something that's always been difficult for me.

However, when I cut my finger about six months ago while chopping an onion, I did not feel safe going to the emergency room even though I was sure I needed a couple stitches.  My finger bled for 15 hours.  I am not exaggerating when I say I would have preferred to bleed to death in my bed than go to the ER.  I still feel that way now.  And prior to that horrible experience in the ER a year ago, I would not have hesitating to go get stitches if I accidentally cut my finger while chopping veggies.

Despite my increased pain, I do not feel comfortable seeking help for that.  I am afraid no one will believe me that I am in a lot of pain.  I feel too vulnerable to go see anyone about it.

I haven't been in therapy since a couple months after the hospitalization.  I did go back to therapy for a little while afterwards, but it didn't really feel safe.  I think it would only be safe to go if I was very, very careful about what I said and if I avoided some topics completely.  And I don't see the point of that.  Why bother going to therapy if you can't talk freely about things?  It would be too stressful, trying to make sure I didn't say the wrong things.  It would be too dangerous.

I did finally go back to see my psychiatrist and now see him every three months.  I am very guarded about what I tell him, though.  This is going to make me sound really paranoid, but I'll admit it anyway.  I have not given him my new address.  I never told him that I moved.  If I am in his office and he starts talking about hospitalizing me for any reason, I plan to get the hell out of there fast.  He wouldn't be able to send police or anyone to get me because he doesn't have my address.

That sounds really paranoid, doesn't it?  I don't think I was ever paranoid like this before the hospitalization.  But you know, just because you're paranoid, that doesn't mean they aren't out to get you.  I have a story about that.   Maybe I'll tell it another day.

Anyway.  While I am able to get some kinds of medical care now, I still have a lot of trouble with that, and I never had that issue before the hospitalization.

I also don't trust people as much.  Not that I was ever a person that trusted easily.  But a friend was with me in that emergency room, someone I trusted to take care of me, and he sat right there and did nothing while that doctor put staples in my arms with no pain medication.   Our friendship has not been the same since and I don't think it ever will be.  We are still friends, but I don't trust him much.  Not with things that really matter.

But I don't trust other people much, either.  I don't trust anyone to be there for me, to help me, to do things for me if I really need something.  I don't trust anyone to take care of me or protect me.  There weren't many people I trusted to do that before, but now there is no one.

So things are slowly getting better, but I am still worse now than I was before that hospitalization.  Worse, a whole year later.

The Root of Fear

I've been thinking the last couple days about how frightened I got thinking about winter and the risk of falling on the ice.  I think the reason for my fear, the root of it, is the feeling that I can't take care of myself, can't protect myself, and that no one else is take care of me or protect me, either.  It's strange how threads connect in our minds, isn't it?  You wouldn't think the experience of being sexually abused as a child would have much in common with the experience of falling on an ice walkway, but there are little pieces of both pictures that are the same.  There are emotions and thoughts that go with both experiences that are the same, and when those connect, other emotions and thoughts start to occur, not based on the real experience but on the emotions and thoughts from the other, seemingly unrelated, experience.  Am I making sense there?

I don't think those fears are unrealistic, really.  Maybe the intensity of them is out of proportion.  But the truth is, if I fall on the ice, if it happens late at night, I really could be lying there until morning.  One of my neighbors has a home health aide that arrives around 7:00 am.  I could be lying on the ground from 11:00 pm until she arrives at 7:00 am. 

And if I was injured, if I needed help at home for a while, there is no one that could help me.  I might talk Mike into going to the store for me one time to pick up just a few things.  Maybe.  There is no one else I could even ask to go to the store for me.  There is no one that could do laundry for me or other things around the house.  I could ask Isaac's dog walker if, instead of taking Isaac for his hour long run, he would be willing to come to the house two or three times a day to take him for short walks to pee.  He might do that, but he couldn't do it every day, because he goes to school and has a job.  So he might be able to help with taking Isaac out but he couldn't do it all the time and there is no one else that could help me with Isaac.

Is it likely that I will fall this winter and hurt myself badly?  I don't know.  I fell twice last winter.   Both times I was able to get back up.  Once a friend was with me, but I didn't need much help getting up.  The other time I was alone and it took me a minute, but I got up and walked back to my house.  So I fell, and I survived it, and I had some bruises, but it wasn't that bad.  I was not left lying on the ground for hours and I didn't need help doing basic stuff at home afterward.  I wasn't injured badly.  Probably, if I fall this winter, I'll be OK.

But it's possible I won't.  And I'm afraid.

On Sleeping Alone

I sleep alone these days and to be honest, most of the time I prefer it that way.  There is no one to hog the bed (or the couch, since that is where I sleep most of the time) or the blankets other than Cayenne, and since she weighs seven pounds, I win any tug-o-war over the blankets or any territorial dispute over couch space.  The  main reason I prefer sleeping alone, other than the fact that I just don't have any person I really want sharing my bed at the moment, at least not in an, umm, sexual way, is that I just don't sleep well.  I wake up a lot, I toss and turn, I sleep a few hours if I'm lucky and then I'm up for an hour or two.  I disturb anyone that shares my bed and I don't like to bother people when they are sleeping.  For gosh sakes, Isaac won't even sleep with me most nights because I am so restless in my sleep.  And I need the light on most nights and most other people I know prefer to sleep in the dark.  Go figure.

So most of the time, I'm happy enough sleeping alone.

The last few weeks, though, my sleep has been worse than usual.  I think it's due to all the dental problems I've been dealing with.  I've had more stress, more pain, more nightmares, my bad memories, more flashbacks, that kind of stuff. 

It is now a little after midnight and I got about an hour's restless sleep before getting up again.  I am exhausted but I can't sleep.

What I wish right now is that I had someone here with me.  I'd feel safer.  I want someone to hold me, someone that doesn't care if I am restless and keep them awake.  Someone to hold me and tell me I'm safe, to comfort me and soothe me and help me rest.  How weird is it that I'm sitting here thinking of who I might be able to call and ask to come over tomorrow and take a nap with me?  That's pretty weird, huh?