3 years

Three years ago I was laying in a hospital bed, trying to stop the tears that had begun upon entering the psychiatric unit for the first time.  I was there to begin MAOI treatment and had been weaned nearly off my antidepressant over the previous 6 weeks or so.  I'd had a long trip up to the hospital because I was so anxious that I kept either getting lost or needing to stop to pee.  Checking myself in had been so hard.  I knew I needed to be there but signing voluntary committment papers, which have a special green border to make them stand out, made it too real.My most clear memory of that day was art therapy.  A kind nurse stayed with me for hours while I cried every time I realized where I was and then it was art therapy time.  I had dreaded this, thinking it would not be helpful.  Instead art therapy has consistently helped me cope better than almost anything else.  That day we did a project that involved decorating concentric circles.  When someone else was asked what mine looked like she said it looked like I was trying to hold tight to control.  She was right.  I cried because I had worked so hard to be ok until that date when I had really struggled with the antidepressant taper for several weeks which had also involved the death of a childhood friend, the first time that had happened.

Over the next week and half or so they weaned me totally off the old antidepressant and started the new one.  In some ways that was my hardest hospitalization in that not only was I uncomfortable being there because I had avoided it for so long, I was the only one with bipolar (typical except my last stay), and in general my history of mental illness was vastly different than the other patients'.  It was more scheduled than it is now and some of the scheduling was not helpful.  Some was done by students, resulting in an angry discussion with one in a group when she insisted that if I thought that my new med didn't have a great chance of working it wouldn't.  I knew the stats.  I'd been on so many antidepressants that I just wasn't as likely to respond.  I think I had about a 30-40% chance of this working.  It did and gave me my good years.  I had a lot of anxious, upset moments.  Once I overheard someone on the phone talking about how much better he felt.  This led to 3 hours of crying with huge, gasping sobs and no help.  I tried to get help but couldn't find a nurse.  That time I had to be sedated.  Another day I checked my email and had an acceptance of my resignation from my job, a job I had no intention of quitting.  That panic attack took 2 nurses, a doctor, and several more hours in my room calming down and probably letting another extra dose of anxiety meds work.

For some reason I also had a rough time following the routine.  I clashed with one nurse several times and the social worker once. I didn't mean to, I just never understood the issues that came up.  Mostly the care was very good and I left with some new coping skills along with the medication.  But when I left I assumed I'd never be back.

Since then I've spent about 18 days in that unit.  It's finally been 10 months but I will be back there someday.  It's nearly inevitable, especially with the current lack of new meds to treat me with.  Going back though is never as hard as that first day.  I hate the green form.  I hate the time period when I've signed it but haven't yet been taken upstairs, time I always want to run away.  However, I know now that I will know the unit.  I know where the good snacks are and how to best get a decent shower out of the safety thing that doesn't spray the water out much.  I know that I will color, which I don't really enjoy, because it keeps me busy.  I know weekends are boring and to try to make an art project those days.  I know that all the nurses but one will go far out of their way to help and will take time to bond a little.  I know that the gruff, tough group leader who is incredibly talented and straightforward and insists on accepting personal responsibility will go out of his way to tell me that he is sorry that I am losing my career when he is one of the first or even the first to hear it said as a statement instead of something my mind was working toward.  I know that the nurses are able to listen to the patient side of phone calls.  I know that the hospital psychiatrist not only lets Dr. Brain help treat me but also he believes that Dr. Mind is very helpful and writes orders for me to be allowed to call Dr. Mind on the phone and to have privacy.  I'm sure they still check in on that but mostly I'll be left alone.  Knowing that Dr. Mind is part of my stay is incredibly helpful to me even just as a generalization.  I have been there enough now that I also know some things that help me.  A private room is ideal and if not I hope to be away from the end.  The second bed not only has more privacy it is blocked from the light in the hall.  Doors that don't want to stay shut without the noisy latch engaging with each night check can be propped on a towel.  Showering requires 3 towels minimum, 4 is better in case the water splashes.  I even became the expert on how to block the floor from a too-short shower curtain that allowed water to go everywhere last year.  I know to bring 3 outfits and wash them there; I also know the washer has made holes in a few of my clothes.  I know that slippers are great but eventually everyone who doesn't wear shoes seems to wind up wearing grippy socks.  I know it is also cold there and to bring layers.

Funny to think that back then things were rough with the med change but still easy enough I thought that was a one time thing.  And now, I've made it out 10 months but that has a great deal with do with Dr. Mind as well as lack of access to anything remotely dangerous.

A lot has changed since that day.

Healing

I am not writing much because as it turns out healing from major surgery is tiring.  The first few weeks I was so tired on pain pills and just early recovery.  Now I only take a pain pill very occasionally but as I do more I get more tired which adds to the fatigue I already because I'm recovering from major surgery.  The last several days have been about driving and tomorrow I'll drive up to see Dr. Mind myself, an hour each way (plus extra time so I can stop if I have to).  Driving is tough.  It's hard to be comfortable in the driver's seat and it's scary that a sudden stop will hurt. As a passenger I find myself keeping my hand where it would "protect" my belly in an accident.  I have a hard time driving the speed limit, especially on the curvy, hilly roads that are the norm here.  When you learn to drive on them you learn for life how to do it at a normal speed.  Right now I drive like a tourist, slowing for each curve and hill, not knowing what is coming, even though I do.

I am spending a lot of time sleeping.  I often go to bed by 6.  I usually don't sleep then but I start the process.  And most days I still nap.  If I don't nap I have, like a 4 year od, quiet time.  

I'm doing more now.  I can be up and comfortable for longer periods.  I am able to make simple meals, do dishes, do laundry (except carrying it; I carry small piles instead of large ones).  Yesterday I went to Walmart myself.  I pushed the cart which I'm not allowed to do but the purchases weren't heavy.  Nonetheless my body was displeased and I was done for the day, except I had to do some things to burn off energy.  The hard thing at this point is that when I'm tired I'm done, then and there.  It makes it hard to make plans.  I think though that partly my body is absorbing this sleep and fatigue that makes me rest whether I am manic or agitated or anxious, as a gift.  It's been a long time since I have just slept like this and it seems to be good for me to catch up a bit.  Because of how severe my insomnia was I really haven't ever had time to truly rest and recover from pertussis 2 years ago.  I had 2 weeks off for that and then was doing computer work.  

The weird thing is that my sleep is still disturbed the usual times.  Partly this is due to napping but I don't often fall asleep very early, no matter how tired I am, how early I was up, or what I did.  I still just struggle to sleep at night.  But I am rested and that's what I care about at this moment.

One thing that was neat was that I did something I'd forgotten about and it really showed how far I've come.  Last year there was a stretch of time Dr. Mind was using an anxiety inventory to track my anxiety.  It went from severe to extreme/panicky and then kept going higher on that scale. It was clear evidence that I was in trouble.  I remember my score being 62 and I think 48 is the cut off for severe and extreme begins there.  Last night I did it for the first time in months.  My anxiety is still in the severe range but closer to moderate than the other end and it is HALF of what it was 10 months ago.  It's not often that severe anything is a great improvement but in this case it's a huge difference.

Otherwise I'm just hanging out at my mom's.  There's a construction project that will be done in the next week or so and my asthma and I are staying at my mom's until the air is clear.  There's just not a lot of point in dragging the cats home while they are used to this one room existence and then dragging them back and then repeating with them going to the kennel in a few weeks while I'm on vacation.  And it's really ok to be where I can rest as I need/want to and not have to get bogged down in trying to make healthy meals, do things that are too much for me so far, etc.

Here's what I have learned:  Never compare a hysterectomy to a C-section.  It is much more difficult to recover from.  Do not underestimate what a hysterectomy is like.  I thought my laparoscopic procedure would be about the same as my exploratory laparoscopy a year ago.  That would be wrong.  The exploratory poked around and took biopsies and removed cysts.  The surgery removed an enlaraged organ and parts of 2 other organs.  I have hundreds of internal sutures.  I have permanent sutures that are basically where they wire the pelvic floor together to prevent prolapse.  I have barbed sutures where I used to have a cervix.  I have three healing on inch incisions (they said they were only half that but they cut beside last year's scars so the total effect is inch long incisions.  I have a belly that still gets crampy and "pinchy" and swells to unreasonable sizes.  I am months from wearing regular clothes, party because the idea of even trying a waistband makes me want to hide.  I still waddle when I walk although sometimes I make it across a room a little more gracefully now.  As soon as there is swelling though I am back to walking very oddly.  Some things are already different.  My skin is back to it's normal self after a slide into acne and oil.  I have only had 2 headaches in the last 5 weeks as opposed to having them about 15 times per month the last several months.  I'm not in pain except for surgical recovery.  I can empty my bladder fully and it holds a lot more.  I didn't even know what a luxury it was to not have to pee every hour or so.

So things are improving slowly but I am not saying much because I am often asleep and also need to lay on my side much of the time for comfort (sitting normally is a source of painful pressure and swelling) and it's hard to type that way.

On Gun Control and a good day

Because I don't have TV I have never seen a presidential debate before last night that I can remember. I was very interested since I wasn't feeling sleepy and needed something different. (Healing is BORING). One part came up that I want to address. There was a question about preventing people from having assault rifles and the like. While answered it Obama mentioned that we need to work harder to keep guns from people with mental illness. This is true. I am not legally allowed to own a gun. This is fine as I am terrified of them. However, from what I'm told in this state I could easily buy a gun. All I'd have to do is lie on that checkbox. Unless you have been in the state system they have no way to know that I've mentally ill and have been fighting suicidal thoughts for 13 months (less now but still there). I have no idea what the solution is. I do not wnat anyone to be able to access my medical records to find out that I have mental illness. I also don't want to be allowed to own a gun nor do I think others with severe mental illnesses should. Mental illness does not cause violence but it does cause periods of atypical behavior that is hard to control. It also causes paranoia, extreme anger, hallucinations and other things that just make it better for us to not have guns. The system still would not be perfect. One of the Columbine shooters was on antidepressants; I remember because it was a big thing about whether the meds made him violent. His depression would not have prevented him from buying a gun had he been 18. His juvenile conviction might have; I don't know. But there are too many examples of why this law needs to change. I had the best day yet today. I walked a little further and took lots of pictures of the leaves, which are amazing here this year. I even made it further without waddling. Then I was able to read on the back porch for a while. I'm now quite sore but it was worth it. Copyright 2006 www.masterofirony.blogspot.com

Apology and theft

WinnyNinnyPoo I very much misunderstood you the other day and was harsher than I meant to be.  I also didn't absorb you were having your own troubles.  I'm very sorry for that.  I had been out to see Dr. Mind and was very sore and swollen and had taken a pain pill.  I didn't think they had much effect on thought now but obviously they do.

I am still at my mom's.  I know I keep saying this but I never remember where or who I've said it to and it is important in the context here.  She had people scheduled to lay flooring on Monday.  They called just before we got home from Dr. Mind and said they weren't finished, could they come Tuesday.  She said yes, assuming it would only be a few hours. They only sent one person and he asked me in the early afternoon if he could come again today.  He had not expected to be alone and had a meeting at 2:30.  Frankly I no longer believe him on that part.  You'll see why. He took off fast, even leaving a whole box of flooring on the deck. Today he was back with another guy.  They finished.  I made them close the dog gate (can't chase dogs nor use a leash) and they left.

Because my mom is helping with meds my vicodin is on the kitchen counter.  Not in full view, but not hidden.  (Well, it was).  Both my mom (yesterday) and I (today) had told them I was recovering from surgery and would be resting upstairs and please call my cell if they needed anything.  Instead they yelled up and woke me, which was great but whatever.

I got really sore on Monday in one place and it never has calmed down.  Yesterday I moved somehow and felt a weird "that's going to hurt" thing.  I've been careful since then to stay in the positions that feel best but still am sore.  I stood for a while to chop vegetables for supper and that seemed to increase it. 

Monday night I counted the vicodin pills I had left.  4 in my purse, 20 in the bottle.  My mom and I talked about this being a good amount now that I only need it occasionally.  I haven't taken any since.  It looked less full this evening and I counted before taking a half.  Half of my pills were gone.  I can't do anything as I can't prove that they stole it.  But one of the 2 did, and I suspect the one who was here alone yesterday.

I will need meds sometimes for a while yet.  I am positive when I have a 12 hour car ride to vacation and then back next month vicodin will be involved.  This takes time to heal and I'm not there yet.  People often assume that if you're bipolar you abuse meds.  It's fair, there's a high rate of drug abuse with the diagnosis.  The expensive drug tests could be done without but I understand.   Dr. Sweetheart would not mind giving me more and would believe me about the theft.  However I don't reach her, I get the gyn nurses who cover  for all gyn. at Cleveland Clinic and they don't know me at all.  Which means that 1/4 of my total script being stolen is not necessarily going to sound good.  I asked Dr. Body for a script as I know he'll know I'm not abusing pain pills.

I feel violated.  As Becky pointed out privately I am very fortunate in that my mother and I made bad decisions in leaving a sleepy, sore, weak, recovering me sleeping with 2 strange men in the house.  It truly was a bad idea.  Much worse could have happened than theft.  But that doesn't change one bit how extremely angry I am.  

Learn from me:  I told patients frequently to keep meds in places others couldn't see.  Better safe than sorry.  Then I did what I told them and it backfired bigtime.

I don't think that company will be getting business again from this house.

Thank you

I really, really appreciate those who have posted. In fact I'm trying to do something I've grown bad at and responding to your comments. I used to do that more and then this last year I quit because I kept signing in with my real name and I was afraid that sometime I wouldn't catch it in time. I can monitor well enough to do that now. However, please remember that my hormones are insane just now (I have my ovaries but they shut down for a while after the surgery) and so if I get emotional in a response or can't say something clearly I'm probably fighting weird mood swings and possibly a hot flash or two (they are so gross!). And sometimes I'll still on pain meds to boot. Right now I feel like "Oh, there are people out there, of course I'll keep blogging". And probably I will. I just need to think some things through. I very much would appreciate further feedback from anyone. Perhaps I should have just said that I'm considering stopping because I don't want to be the trainwreck blog and I'd like to know why people read or if there is a benefit (even entertainment that isn't morbid) to this. And honestly maybe what I need to do is just plan that I'll ask that at distant intervals. Once upon a time I was involved in the bipolar community. Then my closest friend in that community quit blogging and eventually had a tragedy in the family (involving bipolar) that made me run. So perhaps I also need to re-enter there. I haven't yet because I'm not comfortable yet with my completely changed world and my role there would be very different. Anyway, please keep posting and I'm filing this all away to think about when I can do small things like sit up for long period of time (that is limiting blogging a good bit right now). Everything swells when I'm sitting up for long. And that is not a good feeling. Copyright 2006 www.masterofirony.blogspot.com

Clarification

I spend a lot of my life seeking clarification lately.  I also have trouble saying what I want to say still.  I left out at least one thing from my previous post.  That is this:  I am asking what purpose does this blog serve.  Once I was Dr. Brain's "highest functioning patient with my severity ever".  I had a lot to say about living a relatively normal life within the context of my illness.  I worked, stumbled with that and sometimes fell but sometimes triumphed.  I was living life when "they" said it should be very hard to do so.  Now, the truth is that my life will be the same for the foreseeable future.  My routine is going to be Dr. Mind on Mondays, babysitting Anne on Tuesdays, and when I'm recovered enough I'll go back to my support group on Fridays.  That is likely to be a pretty repetitive cycle.  I will always deal with abuse and PTSD but most of what can reasonably be said has been; now it is more dealing with issues as they come up.  I am seeing little that will be of much interest to most people. 

Please understand, it's not about comments.  It really isn't.  I said (I think) that the comments were from only 2 people; I should probably have said a few.  Because there have been a few people comment in the last year.  However, while I have no interest in going an cataloging them, I bet my comments are at 10% of what they were once upon a time.  And that's ok.  I know much of what I have posted in this last yearis hard to respond to; I have posted the fragments of my broken heart as we tried to glue them back together.  That's a lot to throw at people and I didn't expect anyone to understand or have experienced the same thing.  I did just go back a month.  100% of my comments are from 2 people in that time.  My memory of the past year is too fuzzy to believe but I'm pretty sure that is true going pretty far back.  But it's not about comments.

I am not asking people to comment more (except right now).  I am just assuming that if nobody is commenting ever (except Michal) that I am putting things out that nobody is interested in.  If that's true I will give up worrying about typos, trying to be sure to update regularly, and just journal.  If you all see a purpose in this blog and a value in going forth, then I will consider that as I decide.  If you see my blog as a soap opera then I need to re-evaluate what I'm writing.  If it helps you or interests you or makes you more aware of mental illness/disability/curly hair/cat ownership then knowing that lets me know that I'm not wasting time and putting myself WAY out there for no good reason.  It's fine to just be interested out of curiousity.  I've met some great people that way.  But if this has become boring, which is what I feel may have happened, then I need to know.  Because my life will not be changing a lot for a long time in terms of abilities/disabilities aside from healing from this hysterectomy.

Also, please don't feel insulted/attacked or that I want something.  I don't; I just want to know that my past and my illness are doing what I want them to do and that they are not sitting completely unread while I foolishly keep posting and posting.  I write this for me, but there are also times I write solely for you.  I admit that I was a bit surprised that in a month that I had major surgery I've not had anyone ask if I was ok.  But then I'm not much of a commenter on most blogs that I read so who am I to judge?

It's also possible that my mood will change or I'll see things differently and by January I'll feel differently.  That's why I am giving myself months to decide.

I just feel that for those of you who've been around, who have prayed for me, who have smiled or laughed or felt sorrow at my words, who know my life as almost nobody does, that you should have a say in this.

But really, really, it's not about comments!  I know I keep saying that but that is because when you blog comments are awesome.  Someone sees you, someone cares enough to take time to talk back to you, you know you are connecting.  But blogging is also about the purpose of the blog and that's true whether 1 person or 1 million read.  I just think that if a blog is as personal as mine is, personal enough to catch ped*ophi*le"s interest then if it is serving no current purpose except to me it's time to change things.

On the other side of the coin it is very hard right now to believe that anything will improve from my rather sad post-op state.  The is a tough 6 week recovery and I'm tired of it and sometimes struggle to feel life will improve.  So while what I say has been on my mind and heart for a long time it's also been a long time since I've not been under the control of hormones, blood loss anemia and pain.  That's the reason for January.

Thanks for feedback either way.  I'll keep you included in this decision.

Announcement

I have a lot of times in my life that I don't allow myself to make decisions.  If I must make one it is done with the help of a few trusted people.

During this time of healing I have had so much time on my computer that I was forced to realize something.  This blog has changed.  I see that people read it.  Not as many most of the time, but it's not about that.  I have said since I began blogging that it was for me.  However, I have to admit something: I'm a little creeped out.  In the last year I have shared intensely personal stuff, stuff I probably need to take down from public eyes and maybe replace with something a little less raw.  And in all those months only a few people, always the same people, have commented.

I never wanted the blog to be about comments.  It's easy to think that the number of comments you get says something about you and that's not true.  I am writing this for me and to hopefully help someone else.

But...I feel as if my blog is the horrible accident along the road that nobody wants to see but stares at anyway to see the body bags.  During the last few months when it was less about trauma and more about pain and the process of a hysterectomy at 36 years old my readership has dropped way off.  I feel like I'm providing drama to faceless people who are just staring.  And that drama?  That's my life.  And when it's boring?  That's my life too.

I was laying around thinking the other day, because that's what you do after a hysterectomy, and I realized that I didn't care about posting.   Posting has been hard because I have something called barbed sutures in some incredibly tender tissue and if I sit or stand too long the swelling increases and the barbs poke me.  I need to be laying down a good bit and I can only type so long in that position.   More telling though was that I knew Michal was away and so nobody would respond and I felt why bother.   And the truth is that Michal and I are friends and i don't need to blog to tell her what's going on.  Only 2 people are pretty much the only commenters I've had in the entire last year unless you count spam.  And again, that feels creepy because there are a lot more people who are subscribed to the blog in at least 2 ways than those 2 particular women.  I am not saying comment or else.  I'm not saying don't read while you are curious and because it's an emotional story.  I read blogs that way too sometimes.

Master of Irony is going to turn 7 years old soon.  It's possible that everything has been said that anyone cares to hear.  I have another project I want to do which won't be ongoing exactly but which shows the ways that being an OT helped me navigate the social security system a little more easily (I think).  That will be something I write then will be done with.  I'll never stop writing.  I just don't know what form that will take.

On January 15, the blog's 7th birthday and my 37th I will either announce that I will continue to blog or what I have decided to do.  That will be either continue as it is, stop and leave up posts I don't feel are too personal, or I will be going private and blogging for myself only.  If I do decide to stop I will mostly likely take the blog down, remove a number of posts, and then let the rest stand so that if it may help someone someday it can.

Please feel free to offer feedback.  I'm going to ask at this point that you do so in the comments or if you are uncomfortable please leave an anonymous comment that you have emailed me.  You may email me at masterofironyatgmaildotcom (substituting @ and . of course).  I just don't check there often and I won't remember to do so without the reminder (comments arrive in my real email account, the one I'm blogging from in fact).  Please know that while I'm talking about comments this isn't about them.  I guess what I want is that if this is to go on I'd like to have some idea who is "staring" at me and what this blog does for you.  Adjusting to so much in the course of year has made me feel vulnerable and being "stared at" is uncomfortable.

Most of you don't know that sometime during this difficult year I had someone who reached out to me and I stopped the contact when it was uncomfortable.  Soon after my blog was linked to a number of inappropriate sites.  I don't know for sure but I believe that someone reached out to me with a false story, not seeking advice but seeking more details of my story.  After all, if you're a pedophile there is/was some interesting stuff here.  Anything that isn't down like that is coming down regardless. Reading almost 7 years of blog to do that is a big job.  But this is influencing my thinking greatly.  I already served my time as a rape victim and I don't really want the feeling of re-experiencing that because someone steals my life for evil purposes.

My decision doesn't hinge on responses.  I just question whether this is done.  It's a call only I can make and I'll let you know what I'm thinking if you want.

I can't imagine "the end" (as it won't be for my own purposes).  But I need to feel comfortable and right now I don't.

I am not posting because there is nothing to say.  My life is pretty much resting, should be resting, or leading up to resting.  I'm just very tired, which is normal for this surgry.  I don't do much so there's not much to say.  Monday will be 4 weeks and I do feel better, just very tired.  My pain is diminishing and I've made it over 24 hours without pain meds for the first time.  

I really haven't done much for the past 3.5 weeks.  I am stressed out about the psychiatrist because I have no idea what is happening in 2 days since I can't go see her (too far to be in a car).  

That's truly about it.