Loss or Victory?

I am sitting in bed after attending the weirdest Christmas Eve service ever.  It was a pretty building.  Otherwise, weird.

I am thinking of a year ago.  I was in the hospital, was pretty miserable and Christmas Eve was spent playing stupid games, coloring (I hate coloring but it keeps my hands busy), wondering what the menu meant by "holiday cocktail".  I was also terrified.  I had no idea how life was going to work.  I was very aware and frustrated by my cognitive issues.  I knew my bipolar was worse than ever before.  I was scared to death because I knew I'd see Dr. Brain the next day and I didn't know if she would be angry when she read my suicide note (that I hadn't realized it was) and knew that I hadn't gotten help like I was supposed to.  I had gotten to the point where I was willing to admit that I couldn't work but had no idea what to do with that or what would happen next.  I knew I was very, very sick but not really what that meant.  I knew that I would be kept in the hospital until I was deemed no danger to myself and that this could take a while.  I remember someone telling us that we should remember this and know that next year Christmas Eve would very likely be better.  For a room of suicidal people that's a pretty big thing to believe but I do remember thinking there was validity.

I am doing this now instead of the traditional New Year's, by the way.

The year in list form looks like a really sad, really hard year.  It was.  And for much of it I thought I would not stop regretting telling about my suicidal impulses.  There is so much I don't remember and that probably makes it harder because some positive things are forgotten.  I do know the year included the day that I got my last short-term disability check and denial of long-term disability.  There was frantic applications for food stamps, Medicaid and SSDI.  I was so sick but I got a crash course in SSDI regardless.  There was the day I resigned from my job.  There was the day I had to go clean out my desk, a day so painful that Dr. Mind made me call him twice and I wasn't allowed in any store that sold tylenol because I wanted so badly to overdose.  There were the tearful, sobbing conversations with him on the phone from the hospital, conversations where I had to confess that I'd broken the only promise I'd ever made to him.  Later there was the in person conversation where I told him how ashamed of my choices and that I hadn't kept that promise.  That day he was nothing but kind and was so spontaneous and unguarded in what he said that I knew he meant it when he said that I was ok.  There were the days that I had to accept money from my mom, many times.  I had to give up my insurance and go through the emotional discomfort of applying for program after program to assist with medical costs, including seeing Dr. Mind for only the agency charge.  There was the weirdness of using food stamps the first time.  There was the mixed joy/deep sadness that accompanied my SSDI approval through the computer identifying me as a 100% going to get it case.  That's a point of pride:  even the computer said I worked as long as I could.  There's the frustration of repeatedly being required to file for Medicaid when I'm not eligible unless I spend 95% of my income in a month on out of pocket medical expenses.  There was the locked up.  There was humiliation then just frustration with a complicated routine of giving me access to limited amounts of my meds. There was the fear that I would never go a year without  wanting to hurt myself and would always have to deal with my meds being   And then there was PTSD therapy and months of pushing and being pushed to face head-on exactly what happened.  And while I never did succeed at showing emotion or expressing it about much of this I am not haunted by it so much.  Nightmares are rare.  There was finding out that I was the one person who shouldn't use Mirena because of hormones despite the miniscule amounts.  There was the decision to have the hysterectomy and the difficult discussions with my surgeon and her nurse about bad experiences from my first gyn surgery as well as the cognitive impairments that came after the surgery.  This resulted in the best care I could have imagined and also got an anesthesiologist who is a huge expert of MAOIs so they could be as careful as possible.  After a seemingly eternal wait in which I scoured my entire house out of nerves I finally had the surgery.  Recovery was 100% different and I know now that when we say people's pain should be controlled it really should.  I didn't expect the surgery to be as difficult as it was and so I had 2 months of living at my mom's, followed by the painful decision that in another year and a bit I will be moving here.  I don't know where I"ll live just yet but I can't afford a mortgage, utilities, etc. and I need to be near someone.  Yet giving up my home........one of the things I never thought would happen.  There was the death of our dog and our barely making it back to say goobye---and a rough last day.

Yet just like that Christmas Eve they said would show how much better all following ones would be, this year that until about June I thought would have few good spots, it has had them.  Even though this is a year my life has hung in the balance much longer that that hospitalization and I have lost things that were so important to me that I no longer know who I am, there are good moments.  There are many, many memories of time with my niece and the wonder that is observing a  baby become a toddler become a child.  There has been the knowledge that no matter what that little girl loves me, sick, post-surgical, tired, whatever.  I got to see what it is like for a little girl to grow up loved like crazy during the time I was reliving the opposite experience myself.  I found the gift my grandma left me in the diaries, the gift of a story clear enough although not explicit of what happened when I told on my grandfather and what my grandmother's role was, and the horrible hurt she felt.  Finding that was one of the most healing things I experienced this year. There was the learning to cry, if nothing else, about what happened to me as a little girl.  I remember a day that Dr. Mind was demonstrating what emotion sounded like with my words and I was crying which I had been avoiding for a while and he quietly asked if I wanted to cry and I nodded so he went deeper into it and it felt sooooooooooo good to know that he got it.  It's been a year of tears, but that's a good thing compared to when I can't cry.  Mostly I have to have Dr. Mind to cry, but I do it.  It's been the year that I finally learned to enjoy music and relax to it.  It's another year I got with my elderly, renal failure, getting less strong cat.  It's when I learned that Dr. brain is not going to greet worsening symptoms of my illness with anger but she will hold me while I cry.  I learned why we have assistance programs and was humbled as I used them, knowing that anyone can ultimately wind up unable to live as we plan.  I moved past wanting to die and started trying to figure out living.  It's been a year of working from reading children's books to adult books, even though I often read the adult books 3 times before I truly get it.  It's a year of finding what the minimums are and living there.  And there is benefit in seeing life that way.  There are good things that come from asking for help.  It was a year that Dr. Mind spent extra time with me along with seeing me twice a week for most of the year and yet without earning anything for it.  It's the year I found out that I'm the longest term patient at the counseling center as well as the longest term patient Dr. Mind has treated.  It's a year that I've learned a great deal about the kindness of other people.  It was a year with a trip to the beach and a chance to see the ocean angry and completely different than I've seen before.  

It's been quite a year.  But I am so glad that it isn't a totally bad year.  I doubt that I'll remember this year fondly but it is certainly been a learning experience that I've come out of better than I went into it.

Sure beats last Christmas Eve when I battled insomnia and got nowhere.

I'll add this to my list

I am going o write normally here because I think it is time to let the families in CT begin to grieve without scrutiny and because we won't know much else for a long time. I am re-reading blogposts to make sure none that are too detailed in what happened to me are up. I have decided pretty much that I'm going to keep blogging although there may be times I don't post as often anymore. But I miss it when I don't and some touch times are coming with the meds and that will make me want to write. I'm reading about the trauma therapy I did this spring/summer. One of the things I'm noticing is that there is actually a degree of trauma left from facing things that head-on. One of the things that has annoyed me greatly of late has been that I worked very hard to look people in the eyes. Now I don't just struggle with strangers but I barely ever look at Dr. Mind. Right now I'm working on knowing what color shirt he's wearing after each session and looking if he reminds me. I don't think he wants to push it so it's an ongoing battle. I am not saying that what we did was bad or that I'm not extremely glad we did. I just thing that some of the reason I've spent the last 2 weeks crying and have felt awkward with Dr. Mind more frequently lately is that what we did was tough. He had to go from being one of my safest people to pushing and demanding at times, being gentle at others and I couldn't possibly guess when. It was hard and yet it did work. I have so much less anxiety about stupid things and so much less PTSD. I rarely have flashbacks or bad nightmares. Maybe I just hate that someday those kids who survived and parents who survived and those who had to work with the horrific scene will all face such things and i'm realizing because I'm thinking of them how painful, yet how effective this was. I don't know. It's just what was heavily on my mind. Copyright 2006 www.masterofirony.blogspot.com

Perspective

Earlier this weeK I wrote that there are some medication issues I'm facing that I have been really upset about. As I've written before I rely on patient assistance programs through pharmaceutical companies which provide non-generic medications to low-income individuals. I also use various discount cards that help make some generics more affordable. Those that I can't lower the cost enough I am going off of. Some are being replaced with something else while others are being stopped. One med that I tried to stop and which seemed like a reasonable choice wound up having a role in my sleep. So it's all difficult trying to keep med costs from taking all my money yet having adequate meds. With the non-generic meds which tend to be the most important I have had assistance with most. Emsam, the antidepressant patch that really made an enormous difference in my life in the last 3 years, is non-generic, not commonly used and therefore quite expensive. I don't make the cut for their assistance program by a very narrow margin. They make no exceptions and the cost is far beyond what I could do or my mom could do. So in the last week I've discovered that I'm going to have to go off of it and onto some other oral MAOI. Oral MAOIs are more volatile than Emsam which is frustrating enough, but the recommendation is to have 2 weeks off any antidepressant, MAOI or not, before starting another. If you switch from an MAOI to another type of med you still have the wash-out period. I hoped I could be on oral selegeline, which is the medication in Emsam but the oral med isn't strong enough for depression (it treats Parkinson's disease). I don't know what is happening yet aside from I have about 2 months worth of Emsam and will have to wean off for quite a while. Dr. Brain hasn't given me a specific plan; this is a busy time for her and she may not know fully yet what they'll do since this is an unusual situation. MAOIs are used rarely, MAOI to MAOI is REALLY , unusual at point in time. Sometimes specialists at Cleveland Clinic in obscure things find ways to get meds adjusted a little more easily with the MAOIs. Based on coming off my prior antidepressant which wasn't even working well I know this will be really hard. In fact last time I landed in the hospital earlier than intended and not fully weaned because I wasn't safe anymore. We know that, so that may help. But it all depends how strictly they feel the rules must be followed. I've spent a lot of time this week crying about this. It seems so unfair in so many ways, most of what you can figure out yourself. I suspect I'm facing 2-3 weeks inpatient and that is something I dread beyond description. I was supposed to start reducing suicide precaustions soon; now they'll extend. On and on. The death of 20 children and 7 adults at the will of someone who seemingly had no reason, if there even could be a reason to kill 20 first graders, the loss and the horror and the increasingly horrible picture of what happened in there as it emerges is so awful that I realize that my perfectly valid upset about this medication thing is nothing. I am losing a medication that works in a very difficult to experience manner, plunging into stricer restrictions in diet and medications (my asthma meds are recommended to only use in emergencies for example but breathing is good), and still will be paying a good bit I think. My life will be messed up until about spring. And all that rightfully is upsetting. But I just was sending a facebook message to someone and mentioned that I'm expecting to have a tough winter and maybe we can make plans for spring. All I could think of was at least I have a spring. I don't remember the springs when I was 6 or 7 but I had them. I have springs I do remember because I have enough time in my life to repeat it enough to make it ok. And 27 families are facing no spring this year. It will come, but it will just be more grieving instead of the time of (hopeful) recovery that will come for me. It sucks but it's not that bad. Copyright 2006 www.masterofirony.blogspot.com

tragedy

There's nothing to put your own hurts and sadness into perspective than someone killing small children.  This is one of the reasons I don't have television; I don't handle these things well.  

But, I wanted to jump on here quickly and say that I don't understand how any human could cause such devastation, but in the hours and days to follow please remember than he acted with free will.  I've been writing a lot about "blaming" mental illness and I'm going to ask again that people not.  This man did something terrible and the whys and what didn't protect the children from this are the questions to answer.  His motivation is a lot more important that trying to excuse what he did by throwing out a lot of mental health diagnoses.  That will start as soon as his name is released and it is so beyond the point.  He murdered many small children and adults and the focus needs to be on how to stop that from ever happening again rather than trying to make it rational  when we can't understand what motivates such a thing.

My heart is breaking.  Little Miss Anne isn't that far from school and it's impossible to not imagine the child you love in that terrifying situation.  Praying for all concerned and for our country.  A shooting that has more victims than Littleton and one carried out with small children by someone who probably didn't even know his victims is beyond belief.

Low income and lesser quality of care

I am not ready to explain this entirely.  I need some more information from Dr. Brain first.  But today I learned that I make $173 too much to get help with one of my extremely expensive meds and will presumably be switching fairly soon (I have 2 months left, a lot of which will be tapering).  I'm probably facing significant time in the hospital and could wind up with a med that doesn't work as well, then in 15 months we'll have to decide if we want to reverse the process.  It's been kind of one thing too many and I'm really tired and frustrated with the whole thing.  I'm so blessed compared to many uninsured people but  it just shouldn't be that way.  If the only med that helps me is somewhat obscure then I should have access to it.

Anyway, more when I know more.  Too tired to go into it tonight.

guilty

In the last year I've swallowed my pride and accepted help. Help from my mom.  Help from pharmaceutical companies.  Help from Cleveland Clinic to the tune of at least $50,000.  Food stamps.  I am probably forgetting something. Oh yeah, Dr. Mind and his employer.  That's a huge one.  With all of those I had to get used to needing the help.  But it happened, usually as I saw I had no other choice, and I've been grateful for what I have been given, more so than words can describe.

There is one that still bugs me.  Backtracking, I had student loans throughout undergrad and grad school.  Most of my senior year and grad school were covered by loans.  My mom helped repay the senior year later when she was making more; at the time we had her teacher's salary and 3 people in college.  In the 12 years since I graduated a lot of that was paid off.  My final private loan was down to $300 when I learned I wasn't going to be working anymore.  However, that left the ominous BIG LOAN.  That was grad school mostly.  It was a huge amount initially (I don't remember) and seemed to never go down.  Partly this was because I had to put it on forbearance whenever I was on disability.  This resulted in the payments increasing from about $350 to $475 over the years.  In theory it would have been fine.  I took out the loans knowing that I would be making a good income.  And during the time before I was most ill I really did make a lot of progress.  I paid all of my loans at double the minimum for 2 years until my medical costs became prohibitive.  And then as the smaller loans were paid off and the big one loomed suddenly I wasn't working and wasn't likely to work for many years if ever.  So I went through a process called discharge.  It released me from the loan although there are a bunch of rules to follow and if I am well enough to have work within some time frame I'll resume payments.  I don't remember the details.  

I know that I didn't default on the loan.  I know that getting a discharge is quite difficult, especially for mental health issues and that getting one means that they truly believe I am "that sick".  Dr. Brain filled out a good bit of paperwork for them and like all paperwork in this thing she was probably blunt and descriptive of "Jen I met" versus "Jen today" and how hard I fought to work but lost.  But I keep reading about how many people can't pay those loans and I feel bad because I had a way out.  Granted it was a way out that came at enormous cost to me.  It was a way out I didn't want; I'd much rather be making those payments and working.  I think that application was the only one I did that was covered in tears.  I had no way of knowing that this would happen when i took out the loans.  I did know it was my only way to higher education and like I said, payments shouldn't have been a problem.  Had I never had to pay for $400 or more out of pocket every month for meds, `had I not had multiple forbearances that increased the payments, had I not become unable to work for the foreseeable future, those loans would have been paid off.  I paid 1/3rd of them, plus a bit.  I tried.  But reading that 11% of people with federal loans are significantly behind makes me sad because my discharge (not default like I keep wanting to say) at least would have been some money into the messed-up system.

Oh well.  Disability was what I was supposed to do at this point and the humbling that goes with that may last a long, long time.

I am/I am not

I post this same thing periodically and it is always when I've run across the same thing:  someone scams someone/hurts someone/does something morally offensive and within days people start throwing the word bipolar around.

So I will continue to post about it because if one person bumps into this post and realizes how stereotypical and hurtful that is and how often people do it, maybe that one person will think.

I am:

• someone with severe mood swings and rapid changes in my mood
• inconsistent in my reactions.  Sometimes I can ignore something, sometimes I am extremely angry, sometimes I cry.
• easily wounded.  It's hard to justify cruelty when your mood doesn't agree with your brain.
• often tired and inconsistent in what I can do.  That's because the disorder affects energy levels along with medication side effects.
• someone who has hurt people when my irritability/anger has been too big for my control at that moment.  However I have learned to not do this.
• a person who works very hard to manage her illness with meds and therapy.  This involves 5-12 appointments per month, a lot of money, and a thorough commitment to wellness
• sometimes a psychiatric hospital patient.  However I go there when I am unable to safely manage my life.  I go there when I am unsafe to myself.  I go there as a decision made by my doctor and I am not taken there or held against my will.  The psychiatric hospital is not full of people who have done thing that are socially incorrect nor are they there because people on the internet/family members/other people didn't like their behavior.  The only way to be there against your will is if you intend to kill yourself or someone else.  It is not punishment, it does not rehabilitate people who have done bad things.  It is there to adjust meds and make you safe and functional.

I am not:

• someone who plots to hurt others.  In fact to do so would be very difficult for me as it requires intense organization.  Also I generally don't focus on schemes to get others or scam people.  I have bigger problems that take up most of my time.
• out to get anyone
• representative of everyone who ever had mental illness or bipolar specifically.  I don't behave like my illness, I behave like me, affected by the illness(es) I live with.
• a bad person.  I have an illness that is misunderstood and which most people wouldn't pick up on.  Depending on the day if you don't know you may think I'l a bit moody or that I'm quiet and tired but it is not tattooed on my face and people who do not know me well aren't instantly going to guess.
• responsible for the behaviors of others.  People like to say people who are jerks are bipolar.  Undoubtedly that's true sometimes.  But that's true for people who are completely well also.  In fact I find people with prejudicial ideas about me are bigger jerks than anyone I know how has bipolar.
• who you think I am.  Just like I can't read your mind you can't read mine.
• evil.  I am human and bipolar is how I am flawed.  How are you flawed?

I am just so tired of this. I wish people who just occasionally check on google what they are saying before they say it.

Mish-mash

First off, thanks Jean Gray for the Topomax reminder.  I already have so much trouble with word finding that I don't know if I'll be allowed to try this but I think we have to give it a chance because killer migraines don't do anything for my mood either.  Excedrin (ok, that word is in spellcheck?) Migraine isn't an option for me.  I haven't had caffeine beyond occasional chocolate in 5 1/2 years now because I was using it it keep my mood sky high so I could function during a mixed episode.  I was consuming so much that I had horrible headaches and swore I'd never do that again.  My doctors also really wanted me to avoid it because of the dangerous way I was using it and the psychotic reactions that resulted.  In fact that's when I finally started permanent antipsychotics.  Also, I'm not supposed to mix lithium and aspirin.  I thought that was the rule but it could be that aspirin has caffeine or some other health issue I have that says no aspirin.  I remember in college aspirin made me manic although I had no idea that was the cause and I got into a bad caffeine addiction with rebound headaches then too. 

Second, I am finally crying less.  Still crying every day but less.  Some today with Dr. Mind but I did talk to him about my freaking out about him leaving.  We talked a lot about how hard it is for me to consider losing the one person I really trust and how much that trust has increased in the last year and half as he's helped keep me alive, supported me through the hardest moments of my life and that I learned to trust even more and differently when we went through the PTSD therapy where he had to push me in ways he never had before and that I suspect he never would have considered if it weren't for the treatment.  He's never let me get away with avoiding things, which is another thing that makes me trust him because I manipulated a lot of treatment providers and I think that his refusal to let me get away with saying ever that I was feeling suicidal but I was fine was a major factor in saving my life last year.  I spent so much time trying to decide that the moment had come to take the pills that I knew would pretty certainly end my life and I kept hearing the echo of his voice saying "You have to tell me.  You have to tell me.  I will help you.  I will keep you safe but you have to tell me.  No buts, you have to tell me".  I remember fighting so hard against that years ago.  Last December the night I asked to go to the hospital was shortly after leaving his office.  I had to go to Walmart on the way home and was so overwhelmed in there but somehow my mind realized that I had to tell him but I'd missed my chance.  It was the promises I'd made to him that got me to that psych unit and then got me to admit that they should not send me homey  because I WOULd kill myself.  I probably should thank him for that.  Maybe I'll send him a card.  Anyway, just discussing my reasons for feeling this and having him agree with me helped.  I also learned he's never had a patient as long as me.  That's part of the bond also that I didn't realize; he obviously cares a lot and I think feels good about what we've managed to do and that when I first came to see him I had almost nobody I was bonded to and he's been one of the people who broke through that.  One of the things I can't imagine is not having someone who I can make a remote reference to something and have him understand without my having to bust through the PTSD to explain.  He still makes me talk about it but it's easier that he knows.  I do feel better that I have talked to him more about this and how tentative all this seems to be.  It sounds like he has several places that have expressed interest but no good idea what the prospects really are.  And he said there are other factors that could come into play.  I sort of got the idea that this his dream that's been delayed a long time but that he's not even sure he really wants it.  Maybe.  On the other hand I have to handle it when the time comes and he promised to try to not make that traumatic which my last several changes have been (4 weeks notice she was moving to Luxembourg; death; inability to diagnose; refusal to work with my faith-based values; refusal to admit I could have a problem not related to child abuse; phone call from children's services social worker that after 2 years of counseling she was leaving and was closing my case to protect my "decision" to remain in my home.  That goes a long way into not true land and sometimes I wish I could just confront that woman.  But it is too late and she was in a tough position because she was friends with my mom.  She was very wrong, but conflicted.

So I think there's still crying to come whether or not this happens but he knows now at last how much I'm struggling with this and a bit of the why.  And I feel reassured that it maybe is a little less likely than it sounded.  And all that can be done is wait to see.  He promised me that he will work with me on transitioning so I don't have the same kind of transition as I had with him.  We didn't have the same ideas and expectations at first and we worked it out but it was one more reminder that I was transitioning rather blindly.  That shouldn't happen again and surely if I do have to go through a transition it will not be while having months of lithium toxicity that was missed because I was vomiting up my meds, lowering my levels, over and over.  I was also in a horrible mixed episode and so he walked right into as bad as it got, except for the first month I was insisting I was GREAT, no problems without my mood even though I couldn't keep meds down, this was my norm or better.  It took a bit for him to catch on that all this wasn't true and then he was pretty forceful about fixing it, which is good but was hard when I was resenting him because he was still a stranger.  By 6 months in though I knew he wasn't a stranger but someone very good at treating me.

I am getting very sleepy.  I wanted to take a nap when I got home and then didn't because it was too late in the afternoon.  I think it's time to try for an early bedtime.

Good night.

Backlog/Jean Grey ?

I'm sorry, I have a number of comments and emails I want to answer.  This seems the best way to let everyone know that I will answer, I am still spending a lot of time crying and thinking about why I'm crying and it's a lot to handle.  My mom grieves differently than I do and that's added stress to grieving for the dog yet the tears have been for everything.  As of last night I had moved on to thinking a little about what I most dread, which is Dr. Mind leaving.  It's not certain, it's a long way off, but I'm getting the impression that it is more likely than he's said and that this is being gradually introduced.  And just typing those sentences makes me cry.  So thinking about it turns into crying myself to sleep.  I do not know how to cope with the idea of that kind of loss.  And I'm crying again so I'm not going there now.

But anyway, the last week has involved enough tears to drown in.  I'm also becoming pretty certain that I'm into the menopause process (I HATE the term peri-menopause) and that I don't just have hormonal issues from my hysterectomy.  That was rather predictable as I'd had some hot flashes and numerous other signs before the surgery, but I go a week or so and nothing odd happens and I decide it was just my body reacting to surgery.  And then I'll have a week of several, or I'll play the fun blankets on, blankets off game.  Last night I woke up drenched in about a gallon of sweat.  And it turns out even my migraines are probably related.

This week is busy.  Dentist tomorrow, then decorating my mom's Christmas tree.  Tuesday I see Dr. Mind and go to get some yarn for the purple hat my niece requested and said she'll wear (she won't).  Wednesday I am planning to go to a new local support group.  I'm anxious about that; I'm not sure it will be a good fit.  Or it will be a great fit and I'll feel bad then because I'll have to accept more about myself.  Thursday I may go see my niece.  Saturday I go up to see Dr. Brain and have to get there early to have labs done.  Dr. Brain is going to be a LONG appointment.  It's been a long time since we've really talked.  Last month I was doing well from having no real stress (and because vicodin stabilizes my mood but I can't take it for that.  I noticed that two other times; when I sprained my ankle vicodin for 5 days had me leveled out and before my other surgery when I took it for a while.)  I also have to talk to her about trying Topamax to prevent migraines.  There is not a single med that treats migraines when they hit that I can take and the other treatment option involves making my mom drive me 2.5 hours to the only ER I have charity care at and then waiting who knows how long before I can go back for narcotic injections.  That doesn't seem really useful as I'd never make it all that time in the car without it getting much worse.  So, topamax goes from something that was deemed probably not good for me because of cognitive side effects, back when I was working and needed more cognition, but before I had so much memory loss. I don't know what she'll say but I do know that my asking will tell her how ugly the migraines can be.  Jean Grey, didn't you have success with that?  Seems like you and I talked about it once but that was when my dr. was saying that the amount needed to stabilize my mood would make me cognitively unable to work.  Since I managed to achieve that anyway I am hoping I can try for a low-dose migraine control and if I get a bit of stabilization then great.

For those who pray my cousin just found out she is pregnant after her 2nd IVF cycle.  Please pray that she keeps this precious baby/babies.  She's been through everything and never was pregnant before so this is huge.  Her last cycle failed 2 days before her sister gave birth and I know that had to hurt horribly.

I'll catch up on emails/comments over the next few days.  Right now I'm going to try to put my nativity set out if I can do it without tears.  Then I'm going to paint my toes gaudy, glittery fun.  I'm discovered that I enjoy having secretly garish toes.  Because my birthmark is deep purple and on my hand covering 2 nails completely and splotches around others nail polish hasn't ever been a good option there; it clashes and draws out odd colors.  It not only accents the birthmark it accents the 2 fingers that are most affected which are shaped oddly and the nail beds are deep purple meaning that if the color isn't dark enough there is a weird purple tint to the polish.  Not pretty.  But toes I can do and nail polish is cheap enough I can even afford to pay to play.

I guess first I am going to feed the cat.  I moved their food to the basement when it was re-floored and while she knows where it is when she is really hungry she kind of panics and forgets (her own cognitive deficits) and so this time of night I take her down in my arms and make sure she gets enough to not wake me in the night.

Hopefully I'll start mourning and move on to talking soon.  I think this is the week Dr.Mind and I talk about him leaving.  I'm tired of him implying I should say something and that thinking of it makes me cry.  I can't cry over this now.

Ok, cat is about to self-destruct.

Mourning

My trip was good and I'll write more about it later.  However, the ending was sad and I'm just wanting to be quiet.  

While I was  maybe a month from my hysterectomy my mom's (old) golden retriever started acting uncomfortable.  She took him to the vet a few times and they thought it might (probably was) a tumor affecting his liver but at his age invasive procedures made no sense and had it been cancer they couldn't have helped it.  So the decision was made to keep him comfortable.  Some medication achieved that within a couple days and he was doing better before we left with occasional days that he didn't feel well but nothing to indicate the end was near.  It turns out his liver was bleeding and the days it happened were his bad days but the bleeds were resolving.

My mom and I were to leave from the beach rental at 6 AM on Sunday to catch a ferry.  Saturday at noon we got my sister's family onto the ferry and were going to go to some shops and a beach for a few minutes then pack the car.  We went back to the house to grab something and got there in time to catch a call from the petsitter that he wasn't doing well and she was on the way for an emergent vet visit.  So I told my mom we had to go, that she needed to get back and wouldn't enjoy any of this.  She didn't think we could pack fast enough, even if we could get the last ferry.  We did though and they graciously changed our tickets.  The vet called later and said this was a bigger bleed but his symptoms were resolving and he would be able to go home Sunday or Monday.  She warned me that this would happen again and eventually a big one would happen and it would be unpredictable.  Turns out the big one was sooner than we could have guessed.

When my mom brought him home yesterday he'd had another bleed.  He worked hard to breath for hours and then it improved but he couldn't breathe well enough to lay down and sleep.  I went and got some pain meds from the vet and basically confirmed this was death.  He rested for a bit last night and then his increasing weakness showed.  He was bleeding enough to not have enough red blood cells to carry oxygen sufficiently and would have become confused then comatose.  This just didn't happen fast enough to keep him comfortable and so euthanasia was indicated.  It was very sweet, the vet who had always treated him was attached and the other vet offered to do it so she didn't have to, but she insisted on being there through it all with our sweet boy.

He was my mom's dog but we always have said they are mine as well because I've always been around and part of their lives. I am feeling his loss heavily.  In a way I'm crying for so much loss along with this particular one.  It's been a long period of many losses and I'm past handling it well.  I feel like barricading myself in a room with a 'No More Losses" sign outside.  I'm also worried about my mom; this really was sudden.  We knew we didn't have forever with him when we left but there was no indication that we would be packing a beach house in 2 hours 20 minutes, racing to the ferry and rushing home.  (The packing thing is not recommended btw.  That was incredibly hard work running up and down 2 flights of stairs about 50 times while my mom handwashed a zillion dishes and put the away and cleaned out the fridge.  I even pre-packed her; all she had to do was put things in a bag.  I am so glad we did that though or she wouldn't have had the last 24 hours to say goodbye.

Anyway, I'll be back when it doesn't hurt this much.

Insight

Again, I am thinking about happens with the blog.  Nothing it at all decided.  But I do see why I'm feeling this way.

I spent nearly 2 months at my mom's after my surgery.  I could have gone home sooner but was having work done in the house so I hung out a while longer.  While I stayed there we/she (I mostly sat in a chair and sorted things or pointed) set up a sewing room for me with a little desk and the basement got new flooring and shelving (this comes from her, I can't pay it) and it is no longer disgusting down there.  In fact I like it and I've never said that about a basement.  It is organized and clean and I'm dying to paint it in the spring when I can open the windows since there's not much airflow down there.  

When I came home I was doing better than I had in a long time and not having physical limitations routinely helped immensely.  For so long I felt very confused and overwhelmed by my life because I could only handle bare minimums for so long and was not able to set a new routine after I couldn't work.  The combination of changes at home, the attempts to set a daily schedule even when that is currently mostly based on eating healthily through the day and I moved the computer, TV and Wii out of the bedroom which gets me to sit in the living room.  This is good before it's not good to be in one room all the time but I had never tolerated the living room because I hate seeing kitchen mess when I'm allegedly relaxing, especially when I know I really can't clean that mess up.

Now things are different.  I went home and it wasn't the same as before when I either truly believed I'd return to work soon and didn't need to change things or I was too sick to change.  It's been good because I have a bit of a routine now.  I wash dishes before I shower at night.  I try to do something out of the house and then I often nap.  I do laundry every few days because so few of my clothes fit still.  The cats are fed downstairs and their cans recycled in the basement bathroom.  I sift litter every 2 days.  I make sure to have protein, veggies and fruit daily.  I am seeking more support in the community and I am also looking for ways to interact.

I have accepted a lot more about my illness.  The other day I was thinking about my first hospitalization.  I always write a ton in a journal while I"m in there as it helps me focus.  But that first time I truly thought I was just writing about it in a "this will be interesting" mode.  I thought this was an admission for med changes and would never happen again.  I cried a lot that time over being there.  The last 2 times I haven't and that has been because I know that I more than likely will spend time there occasionally for the foreseeable future.  And that's ok.  So is the undemanding part of my home schedule.  I'll add things as I can but I'm becoming more accepting of not being able to do what I want all the time.  I'm seeing my life as it is right now and I don't have the courage to look forward waiting for a newantipsychotic to come out that would maybe give me a greater chance of feeling better all the time.  I can't look forward to working because it's too far off and too abstract.  Moving and Dr. Mind leaving both share dread and great sadness but I am not ready to handle that yet.  Moving is on step one:  what do we do?  But I think it feels like, for the first time in a long time that my life is as organized as it can be and that, in turn means that there is less internal conflict to write about.  It's not like things are easy, they aren't, but finally I've found a way to have a life on disability.  And there's just not much to say.  The days are not very interesting much of the time and so I don't post.  I used to write more about issues with mental healtha nd I may try that again but I just don't know what i Think.

I'm at a new place and I guess I am not finding it easy to work out what that means.

I've got nothing

I haven't posted in forever, unless I forget totally.  I've been kind of busy getting ready for a trip and I've had a UTI that has made me not feel great.  I just am low on energy anyway and the UTI  exaggerates that.  It's been kind of a hard one to kill and I'm on my 2nd antibiotic.  

I've been making some big decisions.  This can't  happen until a few other things happen in the next year or 2, but I've reached the conclusion that hanging onto my house is just making life harder.  I love my little house and I've worked so hard to make it be nice and I've achieved remarkable energy efficiency.  But the mortgage is too much and then with utilities I have no possible way of ever being able to just buy sneakers when I need them.  I'm also lonely.  Or not lonely and that's worse.  I'm content to be isolated and that's a big danger for me.  Nobody is saying this but I'm pretty sure that my degree of suicidal risk this last year means that I am always at risk and being near someone would help.  Regardless since I managed to voice my thoughts about this I've learned Dr. Mind is 100% behind it, my mom seems to agree, and so I'm just enjoying this last year I have in my house.  The simple truth is that not only can I save a huge chunk of my tiny income, I also wouldn't depend on my mom for extra money and I wouldn't wind up with the disaster that would happen if I needed some major repair, like a new roof.  The roof is new and should last 20 some years but by then there's no way my mom will be able to help and who knows what I'll be doing.  So the crazy thing is that that although I hate seeing some of the indoor modifications that I wanted for years years but couldn't do because I was dealing with the external/energy problems.  And chances are pretty good I won't like in the house very long after it is done.  That kind of breaks my heart.  And I don't know how we'll decide to handle my living situation, but I'll deal then I guess.  I'll either be living with my mom in some time of apartment in her house or she'll purchase a teeny house or some land and a mobile home that I will pay her for.  To save the most money I'll live with her but there are difficulties there (like what happens to me when she is gone).  For sanity living very close but not right there is good.  I don't know.  The whole thing makes me cry.  But I am a long way from a work approval for any work at all and it's getting harder every month to see a budget that once bills are paid and Dr. Mind is paid I barely can afford food.  That's with only a small amount of credit card debt.  It's frustrating and is not going to really improve ever until I figure out something I can do/want to, manage to get a job doing it (because I'm going to be vastly overqualified for whatever it is educationally and also will not only have been fired twice but will have this large gap in my resume that I will only describe as "health problems" which means they'll reasonably guess that I have permanent health problems.  And while Ohio's jobless rate is now 8% lower than it was in 2009 my area brings that number up.

Anyway, that's the new plan.  I feel very sad but also very resolute and aware this is the right thing.  

As time marches on I'm still considering what will happen to the blog.  I am not really feeling that I want to keep it so I suspect that I will be just leaving the archives up.  But that could change with any number of things.

I think I'm going to shower.  I was not planning to tonight so I could in the morning but I just feel like a shower.

I am tired.  Two year olds have enough energy for 10 people at this stage of recovery from surgery and UTI and I've been with my niece for 2 days.  She's the kindest person I have ever met.  Out of the blue she asked me "are you recovering from your surgery?".  When I tried to run with her and it hurt she said "oh from your surgery" and just kept on.  She'll be in a caring profession someday.  I can see her being like Dr. Sweetheart, the surgeon who makes sure her patients go to sleep and wake holding her hand and looking at her.  Since I woke up, reacted to morphine and pretty much went back under I have a memory of a lot of activity to my left, then having an oxygen mask put on and the hand thing was used to get oxygen in while I was told to breathe.  All that was just the morphine and not a big deal, but I remember mostly that I was looking at Dr. Sweetheart and holding her hand and I thought I was still going under until a few days later when I found out that the first dose of morphine and I didn't get along.    It was just bizarre because I have been around healthcare long enough to know "big problem" "emergeny" "not emergency but must act fast" and "we can go slow and see what happens" and there was enough bustling to be in not emergency but must act fast and that was odd.  If she weren't there it would have been harder and few surgeons would have been.

Getting sleepy.  I am praying to fall asleep.  I really could use that.  We'll see.

Bipolar changes the country

I live and vote in Ohio.  Frankly, being "THE state" is a pain in the butt.  I would guess that in the last 2 months or longer I've gotten at least 20 pieces of political mail per week and more like 50 lately.  I haven't gotten called because I have cell only but for the 2 months I was at my mom's she was called at least 100 times, probably more.  We didn't answer but it's still annoying that the phone rings whenever you sit down.  I know this happens in every state but it is much worse the last few elections when Ohio has been the one that would determine it.  When I first say a projection I was shocked because Romney was way ahead.  However, only 1% of the vote was in.  

Over the years I've voted various ways.  I used to be a pretty consistent Republican.  I went to a college that was so conservative that I left adolescence and moved into my early 20s believing that what amounted to a stricter world was what I wanted.  I was still a kid...As I grew older I realized that I cared about things that weren't always conservative.  I voted for George W. but I questioned myself the first time because of his approach to the death penalty.  I voted for him a 2nd time (I know......) because I was too ill to sort it out, and because I thought that he had handled 9/11 well and had potential.  I  also wanted to support some Medicare stuff that the republicans were promoting.  As the next election came about in 2008 I started paying attention to what I thought was important. My mom who is a pretty consistent democrat kept telling me about this Obama guy.  One day I was at her house and happened to turn on the TV just in time to watch him speak in Ohio, several hours from here.  And what I saw was a human being.  He noticed someone faint in the heat, stopped speaking, requested assistance and handed his own water bottle down through the crowd to her.  He did not start talking again until the paramedics had gotten her on the way to the ambulance.  He cared and I truly felt it was real, not a political show.  So I listened more and did a great deal of reading about the different candidates and their approach to handling health care and specifically mental health care.  Other factors were involved in my vote but that was huge.  I knew that I couldn't get coverage if I lost my job.  I knew that I could manage to meet a lifetime maximum if I had enough psych hospitalizations.  I knew that healthcare costs could break me, and I was earning a decent salary then.   Even then we all knew that I should be working half-time.  I couldn't because I had no healthcare options.  Now I could buy into the high risk pool and continue working less hours and probably have worked longer.

Over this last  year or two I've  had plenty of reason to become rather focused on what was happening with healthcare.  Not just as my job, but as ME.  For 2 or 3 years I had to pay out of pocket for one of my medications, at $300-$400 per month.  The medication helped me wake up so I could work and we fought the insurance repeatedly, particularly because I'd had it covered for years before they decided not to cover it anymore.  I had about $200 of co-pays/month as well for meds, plus co-pays for drs. and I paid for Dr. Mind out of pocket. Last year when my income had completely disappeared I got the first bills from one of my hospitalizations or my first surgery.  It was several thousand dollars, I think $4000, and I had no income.  I called Cleveland Clinic, explained the situation, filled out paperwork and since then because my income is low I've gotten free care.  I just apply every 3 months.  Because of my proximity to poverty level I get 100% of my care covered.  All hospitals have this program but Cleveland Clinic expands it to cover a lot more.  Along with that I faced having no insurance, no way to see any doctor but at Cleveland Clinic (a long drive if I just need blood drawn), and no way to cover the meds I take, many thousands of dollars of meds per year ($10,000 to $15,000 per year if they were out of pocket).  Thankfully I have been eligible for assistance through big pharmaceuticals for the most expensive meds.  I never will speak as negatively of them again.  Some drug companies cut off below my tiny income and so we have to avoid meds from them.  Everything medical is complicated.  I've had many UTIs.  I am 100% sure I have one now and a test strip agreed.  It's a good thing that I have a good relationship with Dr. Body as he told me months ago that he is ok with giving me antibiotics on my say so because I've never abused them.  So there's no doctor visit unless he makes me go to the surgeon, and that's fine.  I've had plenty of UTIs and I know the drill..

The main thing this year though has been Medicare hangs above me.   I'm not eligible for Medicaid, can't afford the $400 Cobra, and even if I could afford the high risk pool which is reasonably priced, it's still too much and I'd have to have been uninsured 6 months.  Medicare kicks in long after SSDI and so I wait.  Medicare as it stands has huge problems.  I know this as a professional and as a pending recipient.  It's going to take a chunk of money each month.  I don't have the option to do managed medicare as I'd like because it costs more, so I'll have to find dental insurance privately.  But at least there will be coverage.  There's also a plan ot reduce the donut hole until it is eliminated, making meds much more manageable.  I was, however, terrified of the voucher program.  I could see so many ways that would not work and that it would create more paperwork for me and my doctors, plus it could easily have limited care ("Here's your $500 per  month").  So this time I was so focused on this one issue that most other things that mattered to me were secondary.

I voted for Obama because I am bipolar and I believe that his plans, while not perfect, will provide care that I cannot afford because SSDI payments just aren't very big. Essentially my bipolar disorder led me to my vote and with every vote counting here in Ohio that was how mine counted.

And now it is time to sleep.  I stayed up to see the speeches and am now quite sleepy.

PS

If I live in a battleground Ohio, or especially THE battleground Ohio, next time I may leave the country for about 8 months.  

Sheesh.

UTI

For several days I've had sharp pains in my pelvis I thought was from overdoing.  Today it suddenly occurred to me that this felt like a bladder infection and that I had a pelvic last week.  I did a quick test and sure enough, UTI.  So a request for antibiotics is in and with luck I'll get them tomorrow.  

I forgot how stressful watching the election results was.  Or I forgot what it was like when I feel desperate about one issue (no changing Medicare except to phase out Part D donut hole.).  

I really should try to exercise again my my belly is sore so I think I'll wait for antibiotics.

In a dazzlingly clumsy move today I busted my lip with headphones.  I have a fat lip with a big ugly scab.  Charming.

And that's it.

Rough day

It has been 8 weeks since my surgery and tomorrow is one week from the all-clear. Which is good. However, the all-clear seems to come with pain from overdoing or ripping scar tissue. I did 8 minutes of gentle yoga yesterday and today I got very sore very quickly. Today I finally wore jeans. High-waisted, elastic banded jeans with a t-shirt and loose sweater since it's not possible to really cover my belly (I tried on a shirt the other day that fit great until the top of my belly and then after 2 buttons no more would fasten. When I showed my mom I was laughing so hard that I popped the semi-on next 2 buttons open) but it felt so nice to not be wearing the same few outfits. Since I'm going on vacation in a few weeks we've been trying to find some outfits that both look nice and fit. It's a tricky thing to do. So I felt so good going to see Dr. Mind. I'm not ready to go into part of this story yet on here, but suffice it to say that we were discussing some things in the future. I've sensed for a while that he has been trying to say something and the right chance hasn't popped up. So when we talked about that date in the future he reminded me that there is something already in the works that may be hard that year. Nearly 7 years ago when I started seeing him and had to make a rapid adjustment as my prior therapist found out she was moving to Luxembourg (couldn't make that up if I tried) and so I had 3 or 4 weeks to say good-bye and find someone else that I liked and then suddenly I was coping with this huge loss as well as some huge issues at work and lithium toxicity that took a while to diagnose and had me off meds for a while because they wouldn't stay down. I soon was on disability. Our first 8 months were make it or break it. Thankfully we clicked and I began to trust him. All along he told me that when his son was out of high school that he tentatively planned to move away. Today he reminded me that time is passing and if he leaves it will probably be in about a year and a half. Which is a long time off but it will pass quickly and the last year has made me be much more dependent on him because I had to trust him to help keep me alive, and then the PTSD treatment I did with him required me to say and discuss things I've never said, along with letting myself feel things I had never felt. When I knew words but not how to demonstrate the feeling he demonstrated for me. I didn't really get good at it but the point is that I've trusted him to practically live inside my head. Therapist loss has been rough for me because it's only gone fairly smoothly once and that time I didn't break away. Dr. Mind the 1st was during college and so I always knew that when I graduated that was it. We've stayed in touch and so I never had the loss then. In grad school my psychiatrist drowned. The school handled this stupidly, as they did most things. He died in something like early June. I like to think they were hoping that his body would be found and that's why they didn't tell us until August, but his body never was found and I only know what happened because of the internet. They just sent a letter to all his patients saying that he'd died suddenly and a new psychiatrist would start Sept 1 and we should make initial appointments. I wasn't close to that man. We didn't agree on treatment and he always seemed to be rushed. He did try as hard as he knew to help my sleep issues and I think given the situation he did everything he could. But his death was hard. I have never really had a normalm, logical ending with someone treating me over time. At the same time Dr. Mind knows me so well now that he can look at me and know how i am. He can catch me lying. He will tell me over and over and over to not feel guilty because of lying about being suicidal. When I first told him some of what happened to me when I was small he had his back turned but I could see his profile and I could see that he was angry and sad about that happened to me. For almost a year now he's supervised my meds. Now he doesn't do much more than give me a key, but for several months he watched to be sure I didn't run off with extras. He has been helping me see what I need to do to start adjusting to this new life. And there's no appropriate reaction. I want him to do what he has wanted to do for years. He deserves that. I also know it's not at all set in stone and I can't obsess about it yet, just I need to think about it as a potential event. My tears are about me. But he was never meant to be a part of my life forever. Sometimes it feels like nobody was. Regardless I don't want to move on. I really don't. I've known this for years and just because it is getting closer still doesn't give me the right to be this upset. He's not supposed to be a permanent part of my life. Changing to him was the best thing that could have happened to me. Perhaps that kind of change is needed again. I don't know. I just know that I don't want it to happen and I don't want to give up one of the only people who really make me feel safe. I can't stop crying. I think in many ways I just need to cry; I haven't cried in months, at least not like this. I've hormonally cried at commercials and that kind of thing, but this is eyes swollen, exhausted sobbing for hours. I can't even pray that this works out the way I want it to because that would be wrong. So, so sad. There is no appopriate response. I know he's not the only therapist in the world but he's only the 2nd who has really helped or had any idea what to do with me. Copyright 2006 www.masterofirony.blogspot.com

Catching up

I don't have a lot to say right now.  Still healing, still tired, but much better.  I started being able to function about 5 days ago and can do what I want to now as long as I rest.  

I was cleared for all normal activity on Tuesday and can't wait to exercise. I healed well and am ready to move on.  In 6 more weeks I should feel relatively normal.  I may have begun menopause but it's too soon to know.  However the dr. is hopeful that my body likes less hormones and that seems possible given how much better I feel now than in August.  My brain works better.

If you comment and I seem to ignore it give me time.  Comments are going to spam for some reason in my email.  I tried to fix it but may or may not have succeeded.

Praying for everyone affected by the storm.  Jean Grey, you in particular.

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.

Tomorrow

Tomorrow I am scheduled to go see Dr. Mind. However I need to call my dr's office in the morning because of the bladder pain/difficulty peeing I've been having. I think it's ok and have even made it almost 12 hours without painkillers. However bladder spasms and UTIs are both common effects and one can lead the other. So I have to check in. I am praying I don't have to go up. I know tomorrow she's in surgery. Tuesday is her clinic day but I have no ride and am supposed to babysit for a little bit in the evening. I have no ride until Friday and by then I assume either I'll be sick or I won't. I really want them to tell me to just take it easy for a few days or the like. I am so worried about this that I desperately need to have it over with. I feel like not calling in since it's not restricting anything but that doesn't seem good either. Ugh. Copyright 2006 www.masterofirony.blogspot.com

Thinking

It seems likely that I have a UTI brewing. It's common after a hysterectomy. It also could be bladder spasms. Those can be caused by the surgery or by the pain meds. Which is where I get scared. It hurts without pain meds. One of my cousins made it onto my LIST and I've spent the past 4 hours trying to figure out why. I have always know that he is an exaggerator. He also lies. And he has done some things that we'll never prove but there is little other explanation: he stole things that had been my grandmas and more chillingly quite probably things that were ours, from the house where I grew up and which my father stuck in some storage area years ago. This cousin used to check in on my father sometimes and was there when the stuff was stored. It's entirely possible for him to have had access. I'm sure I've written before about my father refusing to give us almost anything when we wouldn't live with him and while I figure it is mostly likely he'll someday die, nobody will know and the possessions will be auctioned it is hard to totally lose hope that someday we'll get some things back. I don't know what I'd even want, but it's weird. Anyway, this cousin lived with my grandma for maybe 2-3 years not too long after my grandfather died. It was a good thing as it offered her more community mobility and social life, but it was also convenient for him. Which is a sticking point for me. Eventually, as I recall, he got caught in enough lies that he left. (It's a trend in men in my family I think). I really can't remember why but think it was that. A few years later my grandma because terminally ill. At first we were told weeks would be the most we should expect. Thanks to chemo intended to reduce pain but which actually treated the tumors we had 2.5 years with her. During most of that time she has a daytime companion, then my mom and I shared the rest. One of the things I did when she was first home from the hospital and then we continued for months was that I read to her. I read books she'd read to us all as children so much she could recite much of them (and I'm talking all 4 of the original Winnie the Pooh books). I also read her diaries to her, in order with many missing years. She never said much about those years but I wonder if this cousin took them. The diaries that existed and papers that went with them, her Bible, her autograph book from high school, and some other things were with the diaries. There was jealous from several areas over my getting these. But it was because we read them, for months, after school, before bed, on weekends. And then for the remainder of her life she re-read her favorite, the one of me at 2 years old. She didn't know she was re-reading it over and over and sharing the same stories, but it made her happy. I also truly believe I was left those diaries to give me the answers that I would want to know as an adult about the sexual abuse in her home. The diaries don't give it a name but they do let me know it happened, how she felt about it, and simply that she loved me and couldn't prevent what happened. That's not blatant but it is there and I think it was a gift to me, that recording of the pain in her life and mine during that time. In other words, she probably wrote some of those diaries for me 33 years ago. Among the most jealous is this cousin who thinks he is the family historian and expert on everything in that area. Another book that is in the pile is one of those 'tell the story of your life' gift books. My mom had given it to her and she never really got into it, which was shocking as she was a story-teller. I had never looked through it really until maybe a year ago. I knew her mother had abandonded her after her father died, and I know that she loved her father greatly. I knew she had found her mother difficult. She wrote a page about her relationship with her very abusive mother than made me sob in sadness for what she went through. Another thing I have with the diaries is a way to see her feelings about things she'd never have said. For example, her sister died with 24 hours of my birth. They'd kept in touch with letters for many years but weren't close. She was sad and she expressed that as well as appreciation for flowers from the church and some meals. Mostly though it was about my birth. There wasn't any consideration of traveling to the funeral. Someone sent a picture of the memorial stone; I found it in a diary. So the last few days my cousin has been posting pictures of my great-grandmother. I did finally find out where my curls come from. Even then he was condesending about my grandmother's great love and desire for curls. EVERYONE who knew her knew this story. And I heard it even more because she loved my hair. I look like my grandma but in some ways I look even more like her mother which is weird. He kept making her sound great. I've been more and more annoyed with this. When a post that was gay porn passed through my facebook (I now have different settings) from him I'd had it. So I pointed out, politely, that she had not been a grandmother or great-grandmother on our side, that she has abandoned our grandmother. He posted quite a lecture, much of which is wrong and which I have in writing. The thing is that I did not want to share that with him. He's working on geneology for that side of the family. I could tell her where to find a great deal of it as I did it from the papers I have last year, but there is something I don't want him to grasp into. In the time before she died my grandma told me of her daughter Elizabeth who died soon after birth. She said she'd never spoken of her and that she was telling me so someone would remember Elizabeth when she was gone. When I did the geneology I put Elizabeth on there and if he starts telling me about her I will drive the 10 hours needed to clobber him (once I can drive of course). Because I am about 99% sure he'd be lying about a very tender subject. Elizabeth is, I realized tonight, why I feel so called to make the baby hats for babies who won't live. There wasn't such a thing then and I honestly don't know if my grandma ever saw her. I spent a lot of time tonight trying to figure out what I am so angry. And it's pretty simple. He acts like he knew everything about my grandma. He frequently has lectured me about whatever I've said about her. And I'm sure they were close enough while he lived with her (although when she'd died I found gay porn hidden in HER bathroom (he had another upstairs) and a used needle stuffed in a kitchen drawer. That part may or may not have been his, but there was some reason to think it was. He worked in the hospital as an orderly (which lets him dispense medical expertise) and that may be connected to his abrupt departure. I can't remember. But. And it's a big but. She was dying for 2 1/2 years. For 2 years my mom and i kept her at home byspending nights. I comforted her when she was afraid someone was breaking in, reassured her when she tried to talk out to check the locks each night, picked her up off the floor when she fell, remembered with her over and over, found things to tempt her appetite during chemo, checked every morning to be sure she was breathing, and spent a horrible weekend with her when she had pneumonia and there was a snowstorm so that I couldn't get her to the hospital. I bathed her during that time and learned something that followed me through my career: care from other can be humiliating. Always cover as much as you can. My patients loved that I could change hospital gowns without any nudity and did so every time unless something made it impossible. I cried with her when she needed me to. I dressed her, got to to the bathroom when needed, and did many things 16-17 year old girls rarely do. I'm so glad that I did; that time with her was sacred. But for 2.5 years she was dying, he was about 6 hours away and he never visited. I don't know if her called; I don't remember it. He didn't come for the funeral, just sent roses. They were beautiful but they weren't presence. They were not the trip I think every other cousin made to hug her once more. We had about 4 months that we knew the end was very near but not upon us. That was wonderful time for her to see family and friends and say good-byes. We were honest, the goodbyes were final and everyone knew it. In the beginning of the 3rd month she began having vag**inal bleeding from her cancer and tumors became visible through her clothes and grew very rapidly. The day the bleeding started she was afraid and even though she knew what it was she wanted to be checked. It was the first time I did something truly adult with my newly earned 18 year old status; I told the nurse that she wanted to be sent, I would be the responnsible party, that she and I both knew but she needed reassurance by her request. The nurses discussed it in medical code and I learned that it is easier to understand than they may have thought. I insisted until she went to the ER. No, it didn't change her life except it told her the end was there. We alerted everyone that the time was coming. That cousin did nothing. When she had to be on morphine the last few days of her life and was unconscious the word again went out that it was days at most. We were so aware of this and calm about it that I remember several days before she died having to leave because it had hit me that she couldn't be buried in her clothing with 3 enormous (volleyball to basketball sized) tumors on her abdomen. (Thankfully they do have a solution for this in case you ever encounter it. She wore a thing the mortuary provided that looked like a dress but fit like a hospital gown and then when they covered her abdomen to keep it smooth and tucked the gown in just right the tumors were hidden, as she would have wanted. In all the patients I treated I never saw tumors like that). When I went in about the 4th afternoon of her unconsciouness she woke and talked to me, telling me beautiful stories about how death was coming. She took away the fear of death for me that day and led to my career. She told me many things about how much she loved me and we said the most profound good-bye I could have imagined. THAT was a relationship with my grandma. Cousin I'm an expert didn't bother to come for one day of this and I apparently have been angry for years (I probably knew how hurt she was as I'm sure she was although I don't remember a specific discussion). As far as I'm concerned the combination of known lying, the porn last night (and aat my grandma's) and the correcting me as if he knew her better than I is not something I can swallow. I'm sure pain and meds and fatigue all mix into this. But I am so angry because in 2.5 years a trip was possible. I feel he didn't care enough to give her a last hug and so he can shut up. I'm sure there's a lot wrong there in my thinking but right now it infuriates me. Hopefully talking will make me calm down. Copyright 2006 www.masterofirony.blogspot.com