Just so the lights don't go out

The electricity here is notoriously bad.  When I first lived here it seemed every storm knocked out the power and the because I live in the furthest corner of the county from anything of use (like electrical workers) and in a tiny town we are such a low priority that we often wait many hours for power to come back on.  I've lost all my food in the fridge and freezer I think twice, and my mom and I have a contingency plan for our beef which is stored in my freezer.

She called a little while ago to let me know I hav a severe thunderstorm warning.  I'd been hearing some thunder but ignoring it.  I got the emergency stuff out and then went out to check outside.  It was fascinating.  There's actually 2 lines of storms coming at me from 2 different directions and both are big storms.  I live in a valley and so the view from my porch is that storms are gradually sneaking in and surrounding us, with a clear center that is shrinking rapidly.  It looked a bit like fireworks.

I just pray we keep power.  I don't think I'm in a good place to have to be patient.  It is now raining quite hard, maybe hail.  I suppose I should look.

Copyright 2006 www.masterofirony.blogspot.com

One day I'll learn

Everything in bipolar is up and down.  Which is implied by the name.  What is not necessarily so obvious is that it is impossible to predict the things that hurt because of this.

I slept about 3 hours last night and then like yesterday was able to lie/lay/whatever still and just rest for a while.  Far from perfect but something.  I just wish I could get enough sleep that my eyes didn't feel tired.  I know that sounds weird, but tired, burning eyes are just uncomfortable enough to keep me from forgetting that while sleep is good I am still not getting enough.  But I'm still so tired that I'm doing dumb things.  I was sick last night because I thought it was ok to eat yogurt past the experation date.  That would be wrong and was a chance to try my sanitize cycle on my washer.  Ick.  I heated pizza for supper and promptly dumped it on the floor.  Thankfully it was a small sized pizza and so I still had a 2nd half that I was saving.  Or not.

But today's biggest disappointment?  OTs have a national certification that is renewed every 3 years, requring 36 continuing ed credits, and then the states dictate that licensure.  In Ohio I renew that every 2 years.  My next renewal is 2013 for state and national is the 31st, which may be today or tomorrow, I don't really know.  Or the day after?  I haven't done the daily repeated calendar checks today.  Anyway, I've been laboriously getting my credits together and finishing the last few (that was a trip what with no sleep and no comprehension and I will not deny that I filled in a lot of bubbles based on where I knew I should be and probably was because of my years practicing.  I was as honest as I could be, it's just it was too technical.  And not understanding tehnical is why I'm not working.  Over the next year as I try to get my credits for renewal I'll have to both choose easier classes and also ones that I am not expected to master a lot of information.  I probably need to start working on those hours.  Right now I think I have 3 from training at work but 17 is a lot.    And a lot of money.

Anyway, disappointment.  I really struggle right now with reminders all is not well.  And when it asked my practice area and I had to answer not practicing I got a little teary.  But then the next page indicated that because I had a certain number of credits in my practice area (had I had one) that I could have gotten a little stamp or something.  It's meaningless in most ways.  Except that I did earn it, I just don't have a practice area so I had to decline.

Now i have one more thing I meant to do today.  I just don't know what it was.  This is another game I really could live without.


Copyright 2006 www.masterofirony.blogspot.com

I slept.  Nothing amazing except that 4 hours of sleep makes me feel like I might live through this.  Hope to repea; may not for a few days based on the past.  Off to Dr. Mind; gotta get a script on the way.



Copyright 2006 www.masterofirony.blogspot.com

Something

I heard back from Dr. Brain.  She has very limited access to no access and she can't pull up my chart and email.  But she knows my meds pretty well and told me a couple things to try.  The only problem is that one I can't because I'm not on the med I used to take and the other is reducing the patch dose.  That I can do but I skipped 12 or 24 hours already because sometimes that helps calm things down and it didn't help.  But at least I should be able to win the hospital battle should it come up.  Looking in a mirror it's going to.  My eyes don't look so good......I'm taking a bag with me in case.Better to do that than to have my mom having to dig around for what I want.  I may not go see Dr. Mind, I may do a phone session so I'm not driving.  We'll see what happens in the next little bit.

I can't believe I am not asleep.  I feel more alert than I have in several days, yet it is 3 AM.  And at 11 pm I was so tired my eyes were closing.  I was so sure this was over or at least going to give me a break.  Oh well, who needs sleep?


Copyright 2006 www.masterofirony.blogspot.com

In case

I am not doing well and that is an understatement.  The lack of sleep is getting more difficult and makes everything else seem worse.  I am so tired but that seems to not matter.  I added a panic attack to the mix today which may actually help by having burned off energy.  But other things aren't great.  I am napping on and off through the morning and early afternoon and keep forgetting to eat.  My thoughts continue to race and sequencing what I'm doing is difficult.  (even more than it has been).  I've had worse insomnia.  I know that.  I have survived it.  But I alwyas forget between how vicious it is. I am so tired I'm nauseous.  I asked Dr. Body about that once and apparently  it's documented as an issue for medical residents who are on call for 36 hours or whatever they do.  Tonight I didn't even try to go to support group because I didn't feel safe trying to drive home after dark.

Tomorrow I see (or talk on the phone with if I remain this tired) Dr. Mind.  That's the just in case part of this.  I have strong arguments that I can wait it out until Dr. Brain is back on Monday.  I wasn't sure of that the other day but now I am.  It may not be pretty but I can do it.  I don't know that he is going to accept that.  In fact I'm probably going to go up with a bag of stuff so that I'll have it if he forces me to go in.

The in case is that I'm always afraid that if Dr. Brain doesn't direct these things that I will be sent to a different unit.  I have clear documentation that I'm a 6North gal but if they are full or they feel my ability to be on that unit is questionable then I'll go elsewhere.  Elsewhere does not have a computer or much of anything else from what I'm told.  Dr. Brain told me long ago she'd do her best to never place me elsewhere; unless the fear of disappointing her exists in the ER as it does on the unit (works to my advantage) I could be shunted elsewhere, meaning not only none of those perks but also not the psychiatrist who has gotten me through 3 hospitalizations and who lets me call Dr. Mind twice a week.  I'm terrified of these things, but I also don't want them to hapepn and have dropped off the face of hte earth for you all.  (So tired Appalachianisms are coming out).

For now I am planning on begging Dr. Mind.  Since I'm not suicidal I think he'll let it go until Monday. I'm not sure we've ever gotten here with Dr. Brain off though and something.  I don't know what.  I hate my mind right now.   Sorting through all my thoughts I THINK I was about to say and he appears to have decided to be more cautious when the hallucinations came and he just let Dr.  Brain know, but didn't make an emergency out of it.  It seemed like my bipolar worsening; he watched toxicity #1 and thought the same things I did:  for me toxicity causes nausea, vomiting, severely impaired coordination, and difficulty talking.  Which all are a little familiar sounding now except that this is because of not sleeping in an eternity.

So  tired....

Can't talk now

Pretty much literally.  I have so much going on in my very busy, chaotic brain and am so tired in combination that typing requires repairs to nearly ever word.  I tried to get in tough with Dr. Brain today  I figured it was worth a shot because sometimes she checks emails from home.  So far I'd say she hasn't and so I am continuing this unique to bipolar experience of forgetting to eat, dying to sleep, and my brain is preventing me from doing nearly anything.  Typing is so, so hard because I'm meaning one thing but if another train of thought takes over my typing goes rapidly another direction.  So I have to edit, plus my typing isn't accurate, so I have to watch that.  Otherwise this would just be a lot of phrases (4 tries to get that word right; 4 tries for this phrase.)

Supposed to start support group that is the next step from my class tomorrow.  May be too manic to drive safely.  Fabulous.

Copyright 2006 www.masterofirony.blogspot.com

whooping cough

If you are around here long enough you'll hear me talk about  having had whooping cough.   I caught it from a patient almot 2 years ago.  I had the shots as a kid but was allergic so was given them in half-doses that weren't effective.  I had a drippy nose for days that I blamed on allergies.  On 11/5/10 the  nose was worse and I was coughing a bit.  I thought I was fine and kept working.  By mid-afternoon I had stopped in the middle of a windy road with no pull-offs to vomit mucus from my coughing.  I saw a dr. that day and started an antibiotic to prevent spreading it to others.  I was so sick that when I called someone to help me with something that afternoon after I went home early I could barely talk on the phone.  I saw my own Dr. 2 days later.  He didn't even have me remove my mask.  He had been warned I'd be in with this so at least he didn't have to be too afraid listening to me cough from outside my exam room/all over the building.  He loaded me up with cough meds, said no work for a full week (which was 2 because i had vacation and couldn't have gone back anyway).  He told me no contact with my niece for a very long time as this could kill her.  I didn't go many places because I was so sick but I wore masks everywhere that week.  Mostly I slept becasue I was so sick and the cough syrup was made of vicodin.  After 2 months of coughing turned into wheezing I was diagnosed with asthma and chemical sensitivies meaning I can't handle perfumes, strongly scented candles, cigarette smoke, even a lot of laudnry detergents without asthma.  My lungs never recovered.  My quilt block says that my life will never be the same.  I truly believe this was the beginning of the end of my working.

The rest I'm copying here from my facebook.

When you cough with pertussis it feels like you have glue in your throat and it won't move. Coughing is the only way to get air and so you cough until you stop the car to vomit mucus, you faint, you are gasping for air you can't get. This happens over and over and over. As a healthy adult when I caught it I would have my oxygen levels dip to the low 80s over and over if I t ried to sleep which increases the feeling you can't breathe. The antibiotic you are given protects others but won't help you. Any baby who comes near you, even during the 2 weeks you just have a runny nose, can catch it and die, pretty much choking to death. If you have had a full vaccination series you still need a booster. What you think is bronchitis can spread to your baby/grandchild/cute baby in the church nursery/library/grocery store and that child can die, especially if they're too young to have had enough vaccines. Because I'm a rare adult who has had the full-blown disease (shot allergy, my mom likes to point out she tried) I can only say that I know why babies die from it, and that it must be terrifying to be tiny and have no idea why you can't stop coughing to breathe. (The reason is that the cilia lining the throat that normally move mucus die and then the disease creates thick glue that is stuck). This link takes seconds to click on some color choices and then another $1 goes to research. Please try it out. For the babies.

Submit a Pertussis Protection quilt square and sanofi pasteur will donate $1 to the March of Dimes

www.racetoblanketamerica.com

Help get the word out about pertussis (whooping cough). See the digital quilt to submit a square. Once you submit your square, sanofi pasteur will donate 

Copyright 2006 www.masterofirony.blogspot.com

Lost

Dr. Mind is worried.  And now he's probably more worried.  He did some basic cognitve assessments (counting backward, counting backward by something, counting forward by 8s, orientation to date and date and remembering 3 words).  I struggled with counting backward, even by 1s.  I only remember 1/3 words even  with 2 tries.  I needed something to fidget with and didn't have any of my fidgets with me so he found a glue stick for me to mess with while we tried to talk.  I know we did, I do not have any clue really what was said besides this has to improve soon.  Left unspoken is the "or if" but I think we all know what that is.  He kept doing things that have helped me before and I couldn't do them.  One of them showed nothing but that I couldn't focus for just a few seconds.  I'd try to count one mark on the paper and would actually count 3, then try to fix it and mess up again.

And it's 9 pm and I've had a candy bar to eat all day.  I think I'll go heat up something.  Praying hard for sleep tonight.
Copyright 2006 www.masterofirony.blogspot.com

Oh the mania

It's 3:30 AM.  At least 90 minutes ago I turned out the light, rolled on my side and tried to get to sleep.  You'll notice it did not work.  I think I am more aware now of how manic I am, which is something I guess.  I wish I could keep up with the thoughts to try to write them.  There are fragments from at least 2, maybe 3 songs that run constantly.  I only sort of recognize one of them; the other two are probably something like background music from somewhere, like elevator music.  The thoughts are so fast that they are fragments.  It is hard to write because I have to sort out what I'm trying to say from a wide variety of thoughts.  There is so much competition in my head to be THE thought that instead there are only fragments.  Some are more visual images that explain the whole thought.  For example I keep visualizing talking to the hospital psychiatrist.  And there are mixed up thoughts from one of the hospital programs versus what Dr. Mind is telling me.  There are the thoughts I'm not supposed to have about what I did wrong.  Then there are thoughts scolding those thoughts away.  There's some bizarre need to think through how to spend food stamps in April.  There are lot of thoughts about how tired I am and how much I need sleep and how much I hate myself because I can't sleep.  I took extra klonopin.  I really, really need something more.  And the chances of that happening are slim.  It used to be Dr. Body would give me something but I know he won't now because my meds are too complex.  I think the worst part is having my brain tell me over and over and over how tired it is but it won't SHUT UP and let me sleep.  Noises are making me crazy, including my own breathing.  Not sure how to avoid that.When I had the lights out some little green light was blinking on my computer to show it was charging; even covering it didn't make it stop until I unplugged it.  my phone was charging and beeped a minute ago.  I just and went into fight or flight before I knew what it was.  Time to try again.  This time if it doesn't settle I will have to sleep on the couch.  Which is sooooooo uncomfortable compared to my nice, cozy memory foam and full weighted blanket (the couch has the hospital/travel blanket that is half the weight).  Last night i was on the couch for a hwile and actually woke up having kicked everything off and freezing cold.

I hope this works.  I am so very tired..


Copyright 2006 www.masterofirony.blogspot.com

Desperate

Tonight I must sleep.  I am so tired that I don't even want to eat.  I had a terrible time with nightmares last night and the night before just didn't sleep.

This is when I wish I could go back to the past when I was allowed to adjust  many meds within certain ranges myself.  I am not allowed to do this at all now and really couldn't even if I were allowed because I don't have access to very many of my meds, just a week and a half at a time at most. And that needs to stay that way.

My mother made it all better by trying to be discreet but not succeeding by saying that my sleeping during the day makes this worse.  Does she think we haven't covered that amongst the doctors and I?  Or that there is a way to fix this but first I have to be sleeping routinely and without all the wake-ups.

This is more than likely due to some stress left after my last session with Dr. mind plus money issues.  It has to stop though.  I am so very tired.

Copyright 2006 www.masterofirony.blogspot.com

Nightmares make me so angry you can fill in the blank

So mad that I could not find a PG ending to the sentence "nightmares _______________".

Down at 2 or so, up at 4:15 scared and upset.


Copyright 2006 www.masterofirony.blogspot.com

How I got on food stamps

I just saw a CNN article "How I got off food stamps".   It was one form of success story; single parent needed lots of assistance while getting her life together, went to school to become a nurse and is now making $75,000/year and talks about how she pays taxes gladly so the program is there for someone like her.

But there are other ways to wind up on assistance.  And most of us don't think that it could ever happen to us.  I didn't.  In fact just under 3 months ago when I was in the hospital and had been talking about my fears about knowing I was going onto long-term disability and after meeting with Dr. Brain that I knew returning to work at all was not likely for an extremely long time if ever someone there told me about how she was rapidly approved with somewhat similar circumstances, and  how much Medicaid and other programs (probably SSI, which I did not know about then; it is what you get if you  haven't  paid into the system long enough to get SSDI and it is much harder to  live on) had helped her.  I remember thanking her and thinking that things would be different for me because I had longterm disability insurance.  At that time  I hadn't found the little clause that said mental health cases were limited to 2 years while physical went until retirement age, and I had no idea that the time I went onto short term disability was the date that affected when my pre-existing conditions mattered.  It didn't come up when I went on short-term because I wasn't off because of psych issues.

The day that I should have been seamlessly transitioned to long-term is when the company informed me that wouldn't happen unless I had another reason for the time off.  So I went from making a great income to having no income in about 5 minutes.

I am on food stamps and soon medicaid because sometimes you can't predict where life is going to go.  A year ago I knew that I wasn't putting money into retirement but I couldn't help that because of medical expenses.  Retirement just wasn't going to be this way.  It wasn't supposed to be disability or at my age. I don't know if the need will stop there or if I'll need other programs.

Someday I hope I won't need food stamps or (once I have it) Medicaid.  I use what I need until that comes, and I am grateful.  I really love being able to get fresh fruit without worrying I'm spending too much, along with many, many other food items.

I just wish there was a way for people to understand more of the stories that result in the use of food stamps before they sigh at me because checking out takes me an extra 35 seconds to use my food stamp card.  Sometime it could be you, Mr. Bought a drill and got frustrated waiting in line but didn't go to 12 items or less.


Copyright 2006 www.masterofirony.blogspot.com

Horrible, awful memory/thinking

One thing that I never thought would happen would be that my memory would simply disappear.  I've had plenty of memory issues throughout the years of meds and uncontrolled illness but it's never been enough to make my whole life a little scary.

It has been a long time since I used the stove or oven at all.  I couldn't face any of my microwavable choices tonight so I dug around and found tuna helper that I could bake.  With the timer that is loud and doesn't shut up in place I hope this is safe enough.  The stovetop is the scarier part.  It's a flat top which at least reduces a few safety issues but I have still caused small fires and melted things.  I know I'm not ready to use that.  The oven is making me very nervous because I'm scared of somehow ignoring the timer or forgetting to turn it off.

I had no spring/summer weight clothes.  I don't fit last years' and I only had a few days worth then instead of needing enough to wear every day like I will now.  Most days for the last 11 summers have been scrubs, scrubs and occasional shirts/shorts.  I got a 30% off from Kohls so I spent literally hours finding things.  It's so hard to decide what I want, if the cost is ok, what the cost is with the discount, and if the size is right.  So I just clicked anything I might want and then sorted through everything until I hope I got what I need.  Checking out is when I realized that when I returned a few things to Kohls yesterday I left my card there.  Frantic searching and becoming fixated on my purse even though it was clearly not there made me finally search until I found the receipt and knew that the card should be with it.  So I called (two attempts at rembering what I was dialing to do that correctly) and it is there.  So now I've dropped my whole wallet at Walmart at night in the parking lot and left it, had to report all cards as stolen after someone tried to use one (unknown if I did something that gave them my information or not) and now I've lost a card.

Once upon a time I was able to function.  I know I remember that.


Copyright 2006 www.masterofirony.blogspot.com

Graduation

I have officially graduated from my NAMI class.  Next week we start our support group.  I'm a bit sad about that part because I'm already in the area 2 days/week and the one day Dr. Mind doesn't see patients is the day of this group.  That would be fine, and was actually the hope that I'd have 3 days of activity originally but with gas prices so high this will be tricky. They're going to work with me though.  I may just have some  weeks I can't go.  Someday in a land I can't imagine I hope that I'll see Dr. Mind only weekly.  But that's too far off to consider.

I'm struggling with a new concept tonight.  Basically I keep trying to see what did I do wrong.  How did I not see how sick I was getting until it got much, much worse.  Etc.  Dr. Mind was extremely firm that I not do this, that punishing myself for getting sick doesn't help.  I said it was because I'm afraid because I did miss something huge.  He says that we can talk about that fear as long as I need to but I can't blame myself.  Later he laughed and asked if I was going to come back and accuse him of yelling in a few weeks, because I tend to try to point these things out (even though really he yelled at me (and yelled is an exaggeration) and he should have then)  and he had raised his voice a bit. I started crying and had trouble explaining because my thinking was so manic that at one point I had 3 seperate thoughts at the same time that I could identify, and all were moving fast.   I told him only if I needed something to make him feel guilty.  It was a very nice change to actually joke about something that is from our shared history.  Slight connection or something.  20 seconds of my day but they were better than most 20 seconds.  And like it or not on his part guilt is not done yet.  Not because I want to beat myself up but because guilt is part of loss and it just is where I'm at right now.  This seems fair enough since at least guilt is a feeling instead of numbness, and I can't help that it is so much to try to handle.

OK, I was up until 5, awake by 10:30 and have been on the go since.  I think I'll try out this sleep thing.  Maybe 1:30 tonight?  Depends on where I cycle when.

Copyright 2006 www.masterofirony.blogspot.com

Another good question

This time our question is from a new reader, Lurid, who has a wonderful ability to put thoughts into words.  As she notes this isn't a cussing blog and hers is but I still recommend it.  And also, you all may not know this, but this IS a cussing blog at times.  When I am manic one of the first signs is I notice I'm swearing in my thoughts, soon in my words, and eventually while writing.  I just edit carefully.  If I weren't bipolar I wouldn't swear I don't think, but I am and I do. I've never asked Dr. Mind the 1st if he remembers this, but his first impression of me couldn't have been good.  I was at my strict, conservative Christian college and had gone to my first appointment only to have the door I thought I was to go in stick and I had no idea what to do.  I was walking away swearing only kind of slightly because going there was hard enough when he opened the door, explained that it stuck and "Are you Jennifer?".  I wanted to die.  So just know my language is not always so perfect........The blog was originally partly written to let college students from my alma mater read about life with bipolar so I was more careful then to not get blocked from their server.  But anyway, I don't think anyone is going to leave in offense.  (If you do feel that strongly please email me and we'll talk).  But anyway, what she said:

Anyway. This post also made me think about the American approach to life as something to win or lose at, as a path leading to a definitive destination, whereas other world views might suggest life is something to be lived in each moment, without a goal at the end of it. While I like that second view a lot better because hot dang does it take the pressure off, I think the first-world POV is pounded way too hard into our heads for us to be able to live more in the moment without the constant threat of "should" in our heads. I should be able to work, I should be able to get up in the morning without wanting to smash my fist into the bathroom mirror, I should recycle, I should care about x, y, z. Whatever. Like life's one big means to an end. 

I don't know where I'm going with this, probably nowhere, but your post made me think about how the experience of living with a mental illness can really turn up the volume on "should," and that makes the struggle that much harder.

And in 2 paragraphs you've said what Dr. Mind has laboriously tried to get me to understand for 6 years.  From day one he has tried to get me to work within my limitations.  But it's really hard to face not working a lot of hours, running around on a crazy schedule that makes it hard to even pee or drink enough water or eat meals.  Living a much slower life is not much of a choice right now unless I want to be back on the psych unit, and I do not.  But even then I'm learning how ingrained prejudicial comments about people who need food stamps or medicaid or whatever are.  Today I called and got all the information to apply for Medicaid.  I have to spend my 401k and some tax money but that's easy enough.  I'll keep COBRA through April to have time to do that and then state funded $2 prescriptions here I come.  There is very likely going to be a period of time that I am uninsured down the line but we'll deal with that then.  I just don't have the funds to pay $425 for insurance that makes me pay 20% of everything and has a deductible I can't reach.  I'm putting off labs and things because of money and that's not good.  But it's really hard to not feel weird needing these things.  I've had one person sigh loudly because my check-out took an extra 30 seconds because I had to run the food stamp card and then the regular debit card.  Boo hoo.  But the SHOULD thing comes heavily in.  We SHOULD be able to buy insurance.  We SHOULD be able to buy food.  Let me just emphasize exactly how much the food stamps help me.  When I'm able to cook more safely I'll get even more from it when I need less prepared foods, and soon the farmer's market will open and take it.

One thing that I do not miss about work is that I always felt I needed to keep up.  It just didn't work for me.  I worked so very hard to keep up when I wasn't well, and quite hard even when I was doing better.  Trying to appear not-bipolar was practically an obsession and that has had direct consequences called refusing to admit I had a suicide plan because that would not be normal sounding.  I am I think starting to let myself be who I am a bit more and that makes it a little easier to get through a day.  Even then I have to be so careful to keep myself from being goal-oriented with everything.  If I happen to shower two days running that is huge.  But I have to force myself to not make demands on myself because I can't control enough to meet those goals.  But goals have been the foundation of my life, not just because I was always working on my own goals, Dr. Mind's goals, Dr. Brain's goals, but I was always setting goals with/for my patients.\

Changing to one day at a time, let it happen as it happens and don't think too hard are some of the extremely hard lessons I've had to learn of late.  Or that I am learning, to be realistic.  I honestly think part of why I am so incredibly tired and hate leaving this room so much is that this is part of learning to let go and if I start looking around I feel guilty because I can't do this or that.

Lurid, I'll answer the questions about coordination tomorrow.  My meds are kicking in now and I will start to make no sense soon.  If I am lucky that is.

Copyright 2006 www.masterofirony.blogspot.com

One way I fill time

As we all know I do not do very much just yet.  15 minutes outside can be enough to totally wear me out.  Today's major goal was to make 2 phone calls.  I actually did this.

Because I don't feel well enough to do much and I can't read a lot or do so many things to fill time I spend a lot of time wandering from random site to random site online.  That was how I found swagbucks.  One of the things I never want this blog to be is commercial.  You can see I have no ads and what with the whole no income thing if I felt they were appropriate to this page they'd be here.

Swagbucks is pretty neat, so I thought I'd share.  I've hesitated because I'm not sure how some
one with less time on their hands than I would fare, but for all I know I have a reader who needs to fill time.  So, anyway, Swagbucks.

It's essentially a way to earn points, generally through commercial effort and as you earn them you can purchase things in the "store".  I think most people get gift certificates which is where I'm headed.  If you put a little time in you can accumulate points quickly.  I've done this for a month and am just below my goal which will give me $25 through paypal.  Amazon is generally considered the best deal but since this is my yarn money paypal was better for me.  You kind of have to look at different values and see what the best deal is; for example $25 of paypal was point for point much cheaper than $10.

The easy ways to earn points are daily occurences.  If you have the toolbar downloaded and open for a few seconds you get a swagbuck (SB).  If you take 2 minutes to click through a series of ads (NOSO-No obligation special offers) you get 2 SB.  There's a daily poll and answering it gets you 1 SB.  Every day they email you about a video you can watch, click on the advertisement to be sure it matches the webpage that comes us, and then after the video answer whether they matched.

Other ways to earn are surveys which can be frustrating as you don't qualify for them all but when you do it's a lot of SB.  Searching gets a lot of SB.  If you search with their search engine (which is powered by a combination of google and ask.com and is a good search engine) then several times per day you can be awarded random numbers of points for what they call "natural searches", which means you need to seem to be searching.  I don't even think about using it anymore.  I generally get 15-25 points per day just searching. Someone gets 50 every so often (once an hour?  I think more frequently) but I've not been that person.  You can "watch" videos (ie let the video play with the sound off) and each of those accumulates 10% until at 99% you earn 3 SB (ie, every 9 or 10 videos).  I run them frequently and get a lot of points with this.  You can also do "special offers" which can be frustrating as some are as simple as watching a video or allowing a facebook app and others are essentially signing up for junk email that I cancel as fast as I sign up.  It's a bit annoying but I have time. These aren't always very honest but can be worth a lot of SB.  There are other ways I don't know much about; there are various purchases and services.   I know a first time enrollment in  in Netflix is about 1000 SB, for example.  There are hidden special codes that I don't ever remember to look for, some projects you can do, etc.

Now the self-serving part.  If this sounds interesting let me know and if you sign up through me I get points.  I'm going to try to install a widget on the blog which helps me monitor some things as well.

I promise, this is not a bid to get you to sign up.  It's just something I've found to be a way to earn a little fun and not have to think.  And I don't know what else to post tonight.  The biggest news around here is that I'm going to quit COBRA and use Medicaid because COBRA is financially impossible.  I can't do the application for a few weeks but in May I should be able to do it.  And that's just not much news.



Copyright 2006 www.masterofirony.blogspot.com

Good question

Jean Grey asked:

It is scary not knowing what the future holds, not having a life plan. Can you give yourself permission to drift for a while? I have reached the ripe old age of 45, which seems to have given me license to tell people how young they are, and you are. You have lots of time ahead of you. Plenty of time to figure out a new path, a new role (to use OT speak), or maybe even return to OT in some capacity. But you don't have to do it now. Now you have to heal yourself.

I don't know why drifting is so hard.  At this point I know I can't work and really can't do much of anything at all.  As my depression has become a monster mixed episode (it may be that it was diagnosed as mixed for months but all I have cared about is the depression) I have to change what I was used to.  It took so many months--and going back to work and failing, followed by a suicide plan--to realize that I just can't work.  For now is tacked on there but I don't know that.  I ran through every job I could think of that I could reasonably get around here in the next while.  Summary:  I nope I can do some OT.  Not now, I can't focus enough to not make terrible mistakes and I'm too irritable to be polite, but someday.  I really want to work PRN just a few hours a month.  I have to get better first.

Maybe that's it:  Getting better is less drifting than it is really hard work.  I was drowning for so long and now that my mood is swinging crazily around when I have a few moments that I don't think I'm going to die from depression that I am working really hard in those minutes on some very basic things, like what day it is, what time is it, did I remember lunch, is there at least one clean pair of underwear in the house, how many days ago did I shower, where is that piece of paper that tells me what I'm supposed to do for counseling, what else might I be able to eat besides sandwiches, cereal and frozen stuff without burning the house down, etc.  I think I'm at a point where I'm constantly trying to both adjust to where I am right now, knowing that this may change totally in an hour or even 5 minutes, but also I have to be so careful because not only is the suicidal risk still present the accidental injury risk is way high.  Just in the last few days I have stepped on a plastic thing the cat had been playing with with the arch of my foot, bruising it and making orthotics painful; stepped down from something after fixing curtains that fell down and my ankle turned all the way, then all the way out, narrowly risking injury and demonstrating how badly torn my ligaments are, and I stepped on something, slipped and very nearly fell last night.  Paying attention to what I am doing requires concentrated effort and being safe  is still a work in progress requiring a lot of help.

I guess what I'm saying is that life is such a struggle right now that it takes constant fighting to function minimally and I find myself either exhausted by that or wanting to find a way to make it stop being so hard.  I think I succeeded for so long at making myself do things I wanted to do whether it was a good idea that I was really capable of handling for so long that now I know that I can't do many things I used to or want to and have this vague idea I need to fill in that time, without remembering that I don't have time to fill because that time is filled with trying to survive, whether than it grabbing a couple hours of sleep in the late morning/early afternoon, going to see Dr. Mind, working all night on calming enough to sleep, or fighting to get my clothes washed and dried before they mildew in the machine and have to be re-washed.  Those things are huge efforts right now but my brain wants to have a more normal thought pattern that I am not capable of managing.  A routine I guess.

So I don't have a good answer except that yes, that would be easier but I'm pretty sure it's beyond me, at least right now.


Copyright 2006 www.masterofirony.blogspot.com

Always and forever

It's been a rough few days.  I was up all night last night crying and yes, mourning.  I was manic and so agitated that nothing could settle me down.  When you can't read, can't follow a movie that would be a bad choice anyway since noise agitates you, you can't focus well enough to do most things that might distract you but at this  point are more likely to just make you more upset because it's another thing you can't do, agitation is tough.  If I could follow instructions it would be better, but I can't, eliminating things that traditionally calm me, like sewing or cooking. I live in a really safe place but PTSD says no walks around the block at 3 AM.  (In college I was also in a safe town and then I did go for walks late at night, usually with a friend who also had PTSD.  We had a policeman stop us and give us a lecture on how dumb we were being once).  So I did everything I could to settle including taking some additional klonopin.  I was able to settle into knitting for a while and as "night" ended I finally fell asleep.  My knitting made me think a great deal.  I have a ton of hats ready to wash and send.  The problem that washing and sending involves quite a bit of concentration.  So I keep making mental excuses to make more.  Yesterday something made me realize thatI needed some hats that were smaller.  Much smaller.  Some of the babies the charity helps are born at 32 weeks and since many will be small the hats are just too big.  Unfortunately  I can only make them shorter, not smaller in diameter.

I think that the reality of my life right now is becoming more clear.  I've avoided it as long as I can but it's time.  I guess.  I am reaching the point where it is a year since I was ok.  It's one thing to think "I've been in bad shape for 6 months" and another to say "my life has been out of control for a year...15 months......5 years........whatever, and at this point that is all I can see in the future.  I don't want to reach places where there are comparisons that make last year vastly different from this.  I have a few months yet although April is when things got more difficu;t initially the best I can remember.  But soon it will be July and the day my niece turns 2 is the anniversary of a huge panic attack that I think was my body's way of saying "too much!" and about 2 weeks after that will be the last day that I worked.

Because of the proximity to my niece's birthday I can watch this march only one way: directly.  She is getting older and I can't avoid seeing that.  In fact the other day at my mom's she kept picking up the wii remote, pressing the button until it flashed, then talking into saying "Jen?  Jen?  How are you?"  giggle giggle repeat.  Let's just say when I started really getting sick she could not do that.  A month ago she couldn't really have done that.

I did think to scrawl some of this down last night so if I can read the writing from the tears Dr. Mind can maybe help.  I don't know.  If nothing else he can be kind because like everything that hurts right now this stuff makes me go back to wanting to not live and not experience this kind of hurt.  And that is something I truly am tired of.

I am not sure that I've faced too many things that I couldn't feel that an end was in sight.  This time there isn't one.  It's weird.  And not pleasant.  I am the person who had a countdown going for about 500 days until finishing grad school.  And now there is no countdown.

Anyway, time to mentally do something else.  No need to get all teary at this time again.

Copyright 2006 www.masterofirony.blogspot.com

Oh

I have been thinking more about my earlier post on mourning.  In fat, since Jean mentioned it earlier today it's been heavily on my mind.  Things being heavily on your mind when you forget easily what you are thinking can be very frustrating and it is also frustrating to know that you figured something out but you don't know what.  So I'll share simply that although there are many other reasons I don't want to go anywhere I finally understand that what they've been trying to tell me is that I don't want to leave because I don't want to have to cope with the things in the outside world that make me remember why I am hurting so much.

Being with other people means that I have to see the differences and there are questions that hurt and I just don't feel like I am living in the same world as others.  That's only partly my desire to hide; partly it is true.

I still don't want to go out.

Copyright 2006 www.masterofirony.blogspot.com

Broken heart, Broken brain

I just was googling, trying to learn more about my aging cat's condition.  I wound up reading about purring and that cats will often lay on an injured part of their human and purr.  I am looking back and realize that many times when I cry I have one or two cats quickly draped across me.  One is always at the level of my heart.  Another time, the night before the first time I was in the psych unit my other cat lay for hours with his head just touching mine.

Copyright 2006 www.masterofirony.blogspot.com

Mourning

When Dr. Mind first told me that I had no choice but to eventually face the feelings I have about my recent losses I declined.  I was afraid of the strong feelings.  And then, gradually, they've come out.  I'm still scared and it is still slow.  It's a horribly tearful time and I pretty much make sure I'm near tissues at all times.  Jean Grey mentioned this today on my last post and she's right.

I don't know my way through this part of my life.  I am not sure I'm even past the entrance, because I really am not doing well with pretty much any reminder that this change has happened.  Even seeing spring begin and flowers bloom hurts because a year ago that meant the end of so many difficult things in the life of a home health practitioner.  Summer has definite bad points but winter is tough, especially in rural, icy mountains. This time it's hard to think of spring as a new beginning or anything more than the next season that I can't work anymore.  It's not that I don't see good things, it is that my depression and sadness are too great to care all that much.

I don't know my way into the grief.  And it is scary.  Yet every once in a while I get hit so very hard that I don't have a choice but to face it.  Oddly I keep picking things to read or once a movie to watch for a while (I've given up on more than segments of movies; books at least it is normal to stop many times in even a few minutes) that include someone with a disability that is taking away their job.  I think this has happened 3 or 4 times now.  I wish I could say that this lets me jump in and face the pain.  It doesn't.  But it does remind me I'm not entirely alone in experiencing this, even if the other people happen to be fictional.

However I have no idea how to do this.  I think it would help if I knew that like so many things I'd feel better if I just did it, but the truth is that I very well may not.  I also don't usually have to try to deal with things with knowing that they could make the suicidal tendencies increase.  I had a bout of that last night that was unpleasant and avoidance is still easier than trying to face those things without a doctor there.  I think that getting to a point of acceptance is also hard to have as a goal because I do not care to accept this.  I much preferred those months that I grabbed at so many med options hoping for success.  But instead I was grabbing at straws.  I still hope that we find something that helps.  At the same time I know how many meds I've been on, how many cocktails have been tried, and the simple fact is there isn't much we can do.  Dr. Brain told me the other day that she'd heard the Guru speak and that even he wasn't aware of anything new.  Dr. Brain warned me years ago that this happens for people like me who don't tolerate/respond to meds well.  I just thought I'd moved past the risk when something worked.  I do know that ultimately something will help me.  I just don't know how to hang on until that happens as well as coping with the losses.

I think the very simple way to say it is:  when I was a little girl I wanted to be different things at different times.  I wanted to be an astronaut for years until I realized that being afraid of heights might not work well.  I wanted to be a teacher, writer, and then settled firmly on teacher for many years until I was in college and realized that it wasn't right for me at all.  I wanted to be a mother with lots of kids.
And then right up until grad school applications were due I fought a hard battle with desires to be a therapist, an OT or a psychologist with a specialization in behavior management for individuals with special needs.  OT won out in the end and it was great while it lasted.  The thing is that there was never once a time that I even thought there was a chance I would wind up here, too depressed and too manic by turns to function with even the most simple things.  I never saw my life being confined to treatment and my bedroom because the world was too much to face.

I don't know how to mourn for losing everything I thought I was or wanted to be.
Copyright 2006 www.masterofirony.blogspot.com

Ugh

Because this life of mine isn't challenging enough I just got a reminder that another thing won't happen this year. Every year I have worked I have gotten special OT gifts for all assistants and usually the rehab aide if they have helped me a lot.  2 years ago I bought the stuff, got mad at my assistants and the company I was contracted to and kept it all (not mature but it felt good). Last year I was the entire OT department.  In fact last year my company went to great lengths to give me a fruit bouquet.  I guess I knew April was coming and that April is OT month but it wasn't something that registered.  Now though it has because the company I've bought me gifts through sent me a reminder to order.  And there is no money to order nor is there need, yet I should have an assistant and a job if only.  And that is the feeling.........if only.


Copyright 2006 www.masterofirony.blogspot.com

In addition

In addition to the editing I mentioned yesterday some posts will not be posted at this time.  This is my journal and I'll be writing the same stuff but not publishing every thought I have for a while.  Eventually we'll have a catch up day with hundreds of posts (not really, I hope) and I'll keep posting here routinely but the posts may seems a little edited for a while.  It's called survival.

Copyright 2006 www.masterofirony.blogspot.com

Briefly

There is some editing and removing some things that I have been intending to do for some time.  For now I'm mostly putting any post that I want to edit on draft status and they'll come back as I make some slight changes. The bad thing about writing a blog when as sick as I've been is that sometimes things may not come out gently.

Copyright 2006 www.masterofirony.blogspot.com

Counting crazies and other things

In the name of frustration I did a little study last month.  (Please excuse any interruptions here, I may have to kill my cat.  Not really.  She's just being bad; we're in a span of nothing tastes good to her so she wants fed about 1200000 times/day.)  My study, since February is a nice clean 4 week month (aside from leap day which I don't remember) was how many times were derogatory remarks about mental health issues made on facebook by my friends.  I only have about 60 friends so not a ton and some people know to avoid that kind of thing with me.

I still had 15 incidences.  I am not being picky either; I don't mean "You're crazy to do that", I mean comments making fun of mental illness somehow.  Often it was mild.  Many times it was from someone I truly care about and someone who would do anything to help me.  I did find that interesting though, that this stuff is so prevelant in our society that with a small sample over 4 weeks I had that many that I caught; it's possible there were more.

Today's blessing:  Saturday I heard a rock hit my windshield hard.  I couldn't find a chip.  Yesterday I had a 2" crack.  My insurance has a deductible.  This would take a huge chunk of my emergency/be able to get a haircut money.  The first quote was $257.  I happened to go into my bank account for something totally unrelated. I had a deposit of $215 from my last employer (PTO accrued I suppose).  I had deposits from them divided into 75% to one account, 25% to another.  When I accessed the other account I had another $70 in there.  So pretty much God gave me precisely the amount I need to fix it with a tiny bit extra.  Good thing since I also need about $100 for carpet cleaning; the dementia cat keeps trying to get my water at night and spilled something that does not smell good.  And I HAVE to get a haircut.  It's scheduled now for the beginning of April.  But my hair is so curly that if it gets too long without the layers being managed the hairs that normally would fall out wrap around themselves and the hair around them (and I have more loose hair from my picking/hair pulling issue) which causes tangles that no comb or product I've ever tried can conquer.  I already have to put tons of conditioner in, wait, then comb it with the conditioner in to have a chance at hair control.  But until it's cut this is a losing battle.

Hope that sleep comes soon.  Not sleepy at all.  If my med change netted me only a few days I guess that is better than nothing but I really want to sleep all night.......

Copyright 2006 www.masterofirony.blogspot.com

Where I've been/will be

Remember me mentioning I was doing an arts and crafts project for Dr. Mind?  Well it has turned into a lot of work/big part of my life.  Essentially I made a shoe box into a big collage.   The outside is how I think other people see me; the inside is how I see me.  I got very, very into this for some reason and actually ran out of space.  So that was about a week of work.

Now I'm having to pull 2 words or statements off of it every day and write about them.  On top of trying to get stuff together to help people with SSDI paperwork (the doctors) and my own stuff together for a few things it is taking a lot more time.

My computer is going to overheat and shut off so I'm going to get off, but that's what is making me be quiet.

Oh, and I do now have pierced ears and tomorrow I should be able to fidget.  I really hope this helps the hair pulling.  I can't believe how much easier that has gotten since  I was 12.  Really no pain and no loud piercing gun noise.  The only pain at all was one ear swelled a little and I had to move the earring back away from the skin a little.  I feel weird; not used to seeing the little tiny silver studs.  But I found a good price and I think when I'm done with studs I'll find something I really do like.

Anyway, comptuer now on borrowed time.



Copyright 2006 www.masterofirony.blogspot.com

Speaks for itself

It turns out that I'm just 2 years too early:

Starting in 2014, insurance companies won't be able to charge more or deny coverage based on a pre-existing condition.

By then I'll be on Medicare.  But it is good to know that in 2 years time people won't be in my position with COBRA costing too much and wanting a simple HMO and being unable to get one.

Copyright 2006 www.masterofirony.blogspot.com

Forget it

I can't password this.  It is too close to my heart and my heart has lost enough lately.  No need to send requests for passwords.  If it becomes necessary (and I do have a question out to someone who will know) then I will do it.

Dr. Brain increased my seroquel.  It is making me groggy but not sleepy.  Figures.  Hopefully this works because I realized after I left her that I'd been really hoping for the stronger sleeping pill that was on her list.  The problem with that is that I wanted that pill to stockpile it.  So now we're back to my having to admit to having planned to keep that script from Dr. Mind's awareness to give me a "choice".  That's been admitted to her (and a few days later to him) and I'll be asking her to email Dr. Mind with med changes since I am not yet trustworthy apparently.

My cat and I are at my mom's overnight because of a miscommunication.   I forgot how she loves variety.  She looks like the Anna of 5 years ago, sniffing every corner, climbing on all the furniture, and purring like crazy.  I swear her eyes lit up when she got here.  So she's having an awesome time and that is nice to see.  We'll all be staying here for a couple weeks this summer while my mom is away and it is good to know one cat is up for it.  The other will hate it.  I will continue to sleep constantly.

I'm a bit disappointed tonight.  I have been for many months (I suspect years) picking at my scalp.  This has now become pulling at hair until it comes out.  I wondered why I was surrounded by hair balls of my own making.  I thought I had severe dandruff and have purchased every product you can think of for that without it improving.  Finally last week I realized my head was not scaly, it was scabby and at that time the whole thing was a scab.  I looked that up, continued to think I wasn't pulling hair out, and then got up late for an appointment and put my hair in a ponytail when wet.  That let me see clearly the thinning spots.  So now I'm trying to keep my hands occupied even more than I have been.  I had decided that I would get my ears pierced as earrings would give me a fidget near my hair that wouldn't do damage.  But wow that's gotten expensive.  So now I'm in the midst of the great debate of someone who can't afford much of anything.  I think the cheapest starters are $20.  I'm not sure.  I may try to call the other place near me that does piercing and see if they are any cheaper.  That seems like so much for a not very nice set of earrings. I really hate money.  It's harder than I thought (which is saying extremely hard) to go from a nice income to nothing.  Surprise.

Anyway, even after I asked Dr. Mind to write down my counseling homework I proceeded to not pick up on the directions so I have to do the rest of that and make up yesterday's.  I am so tired of forgetting.


Copyright 2006 www.masterofirony.blogspot.com

I missed a few years

 Several, apparently 4, years ago I participated in a grassroots kind of education, attempting to eliminate the use of the word "retarded".  While that is not something aimed at me I consider it close enough.  I have cognitive problems, lots of them right now.  And there's not a lot of difference between that and "crazy" "mental" "psycho" "I'm SOOOOOOOOO bipolar hehehe" "schizo" etc.   All of these things exist because of brain abnormalities.

So, even though I'm a bit late in the day, please think about this today.  If you want you can follow the link and sign a pledge. I was just there and they have well over 200,000 signatures.



Copyright 2006 www.masterofirony.blogspot.com

Too tired for titles*

*A post marked with an asterick means I will be discussing suicide to some extent.

I don't know what this means but I am feeling sleepy tonight.  I am praying that I may actually get a whole night of sleep.  Since last night was bad this would be a very good thing.

Funny thing is that I think I feel better because of something that happened when I saw Dr. Mind.  I finally, finally was able to say that although the suicidal thoughts continue I no longer think that I am going to do anything harmful, that I think about it but don't have the same strong urge to do whatever I am thinking about that I had before.  I am positive that this will come and go for a long time and that some of the change in how I feel is related to a lot of mood swings and feelings I am not used to because it has been a long, long time since I left horribly depressed.  We talked a lot today about that form I had to fill out for SSDI and the one Dr. Mind has to fill out as well.  He carefully but gently cautioned me that this would be at a low level of function.  I told him that filling out mine had only made me realize exactly how sick I am and that I've been too sick to even notice things like I forget to eat lunch half the time, my social skills don't exist, and there were very few issues which I did not have to mark as a problem.  Pretty much I can feed myself and go to the bathroom and I don't have issues with lifting, reaching, etc. (unless you count my very undignified loss of balance and landing in a laundry basket that I struggled to get out of last night).  That's it.  Ten pages of that is humbling.  So Dr. Mind is concerned I won't like what he writes and in reality it can't be worse than I wrote.

We talked a bit about my arts and crafts project and how I think other people see me, the part of the project that is about done.  That led to discussion of how even though I know that I am the person food stamps were designed for I still feel weird and am aware of how mean people can be about them.  A friend posted on facebook the day I was verbally approved something about how good it is we can take advantage of things like that if needed.  It didn't mention me, but it was for me.  I posted "thanks".  Someone else posted under that this diatribe about people who don't want to work having a way to cop-out.  I held my temper, barely, and only because I'm not ready to share all of this with the entire world.

After that was the most bone-chilling thing I have ever heard.  We talked again about how hard it is to see such enormous changes, and that I find parts of this even more hard than they might have because while I knew that the end of my career would likely come earlier than I hoped I didn't really know the system and so I had no idea about the part where I'd not have income for months, the messed up insurance issues, and that I would find myself gratefully accepting what I believe is the top level of food stamps, with a pending on hold until spend-down and I figure things out Medicaid application, and knowing other programs will be helping me in the months to come.  I don't know how I thought it worked but not in the cruel, degrading way that it does.  So I said something about being glad that I had that hospitalization at Christmas with time to adjust to the idea that I was in fact quite suicidal and oh.my.God. I wasn't going to be able to work anymore and did I mention not being able to work?, and that we were prepared for unsafe behaviors since the day before I left the hospital.  I said something about it was so hard anyway and if all of it had hit at once it would have been even harder, which I can't imagine.  Dr. Mind told me gently but very seriously that he thinks if I had not had that hospitalization I very likely would have killed myself.

I knew that this was taken seriously.  It was in the hospital except that they thought I was over it by the time I went home.  My drs. both did not agree and that led to all the safety measures.  I knew by how carefully Dr. Mind makes sure I don't take the keys to my locked med box and generally that he doesn't see me sticking full bottles of stuff into my bad, as well as the part where have nothing sharper than a steak knife in my house over 2 months later.  I knew and know that Dr. Mind has put enormous amounts of time into helping me and that he's essentially been a phone call away for all this time.  I knew he was worried.  It wasn't until today that I realized I have scared him.  I thought my own fear was exaggerrated.  I was wrong apparently.  And so now I have two doctors who have saved my life several times over.

I just really pray that I've improved enough to be allowed something more sedating so that I can sleep every night, at night.  I can't even remember what sleeping the way you're supposed to feels like.  That's been one of the more difficult aspects of this, everyone has been very aware that I know enough about meds to be lethal.  Not that it's hard to find out but I don't have to look up or think hard and I can come up with a very bad combination.  So they've made it harder, and I still was so high risk.  Which may return tomorrow but this new perspective is strange.

Copyright 2006 www.masterofirony.blogspot.com

Manic

One of the reasons I was hesitant to say I was feeling better was that I knew this might happen, in fact that it nearly definitely would happen.  My mood has swung a little too far up.  And then down.  And as of now back up.

The time I've put into Dr. Mind's arts and crafts probably was a hint.  It just felt so good to enjoy doing anything and having something that my lack of memory and focus can't mess up easily that I thought I was just having fun.  More like I was completely making the most complicated, detailed collage ever.  It's been hard to put down and I truly thought it was just enjoyable although I knew I was a bit manic.  And then I realized that I had done what I never, ever do and gotten so involved I missed meds.  Since they don't really help with sleep it's probably fine, but still, not a good thing to forget.  I can also tell I was manic because there are things I cut out that make no sense whatsoever or that I know I thought were witty or funny and that now make me wonder exactly what is so funny about 3 seemingly unrelated words.

I'm sure part of it is that I had to really apply myself this weekend.  One of the most important forms in determining disability (I believe) was in my mailbox yesterday and according to the instructions must be sent tomorrow.  In fact it almost sounds like I have to fax it, which I can't afford.  I called and left a message with my claims person.  But that form was tough.  Partly it was tough because sitting still and writing is hard.  I did it by filling in notes with pencil and then using that to write an answer.  For 20 very detailed questions, especially since giving as much information as possible benefits me.  It was also emotionally hard to read my answers, particularly when I realized I hadn't changed the kitty litter in an astoundingly long time (it's been changed now).  But gross.  All the hygiene things I struggle with are hard.  Being honest that I need help/supervision with med management for safety also was not the highlight of my life.  But the questions about how I interact with others, can I do this, this, this, this and this (no, no, no, no and no, without help) really were hard.  Also writing about the changes in what I can do now compared to a number of months ago was unpleasant.  I felt like writing "nothing" and moving on, but that wouldn't help.

Finally, congratulations to Michal, our ski patrol queen, from someone who tripped doing nothing and fell into a laundry basket that was rather hard to get out of!

Copyright 2006 www.masterofirony.blogspot.com

Not used to this quiet

There isn't a lot happening.  I got the official notification of food assistance today and was credited for February and March, which is very helpful.  I'm hoping to use the Febrary money to stock up at Sam's club with help from my mom.  I also got a very comprehensive form from SSDI to fill out regarding my ability to do about everything in the world.  It is hard to be honest about how bad things are.  I am feeling a bit better but what I am told is about a full year of serious depression will not resolve rapidly and much of my feeling better is really feeling mania.

Dr. Mind's arts and crafts project continues to keep me interested in something different and busy.  I am not really explaining it because the truth is he didn't write it down and I am not completely sure I am doing what he said to do.  But I am making a rather specific, detailed collage and while I have done collages with most or all my hospitalizations to defeat boredom I always felt rather peaceful doing it and I think that it is more than just feeling better because I wasn't in my hospital room and wasn't bored, which is what I've always attributed it to. But this is exactly the level I am operating at.  I am mostly done with the cutting out part and then the part that will be much harder comes, sorting out all the things into categories and then making them fit.  I figure I'll glue the excess to paper since it can't hurt to do extra.

The horrible illness seems to be receding.  My lungs are doing well and the breathing treatments finally loosened everything up.  I'm still tired and achy with a sore throat and possibly feverish tonight; that comes and goes.

I never told about my cat.  I actually got very good news.  I can't remember what I've shared so basically cat is old, in renal failure, being treated for arthritis with glucosamine and started pulling hair out and licking until she was mostly bald on her belly.  I took her into the vet in early January and was told it was anxiety and given an antidepressant gel that goes in her ear to manage it.  This does help her stay calmer and there is less confusion in the night turning into behavior problems; she generally sleeps all night now.  But the areas got bigger.  So when we went to the vet this time I requested the owner and the one I had seen does not make me feel confident in her.  I was prepared to find out her arthritis was so bad that we'd have to treat it more aggressively and that pain could become the cause of death for her.  He said that it wasn't anxiety, it wasn't arthritis, it was her kidney failure.  I knew people become unbearably itchy with renal failure.  I did not know that cats feeling itching as pain because of the way their nerve receptors work.  We talked a bit about renal diet and I continued to refuse this (she would not be happy) and decided that we'd try steroids.  He cautioned me that it was possible/likely her renal function wasn't very good and if it wasn't we'd have to decide between steroids which hurt the kidneys and her discomfort.  He also told me that one of the blistered areas was bad enough it could open and cause a wound that he implied would be fatal.  Needless to say I wasn't really happy about the 6 weeks my cat suffered because the other vet never considered this.  I should have said something but was too upset and so I'll just request him from now on.  There's a 3rd vet I saw once who is good and my mom really likes her but at this point it is one vet time.

So the next day I got a surprise.  After being prepared that her kidneys might really be failing and thinking more about what I'm willing to let her go through, what signs of suffering would be for her, and dreading the phone call (I'd even asked to be given little specific information because I just don't want to do this by lab values), the vet called to tell me her labs were "surprisingly really good".  By that time the steroids had kicked in and she was clearly feeling better.  In 2 weeks she has been more active, more comfortable, more able to curl into a ball or climb up and cuddle in my bed with me for prolonged periods of time.  I can't explain the changes but she's been herself again.   She's eaten like a horse since kidney failure=starving sensation + steroids= REALLY starving sensation.  That we can deal with though.  She was getting close to healed and the shot wore off.  We'll be starting oral steroids which I am not looking forward to but I am not going to drive 90 minutes every 2 weeks for a shot with gas at these prices.  I suppose I can give the  shots at home if needed but although I know how to give a shot and am not afraid holding the cat while injecting turns out to be tricky when I've tried this.

But the point is, Anna is not acutely dying.  I do not think I'll have her for as long as I'd hoped, but she was diagnosed with this close to 2 years ago and since I chose not to treat she has really lived a very long time.  She doesn't look fragile (except her poor belly) and between the 3 meds she's on now she is so much more comfortable.  I don't fool myself; there's an odor to kidney failure and she has it.  She still is going to turn 17 in a few months.  And she needs 3 medications and incredibly huge amounts of food to make it.  On the other hand, she is able to get in and out of my bed (she couldn't for a long time).  She even  jumps down albeit carefully.  She still plays, every day for a while.  She seeks out attention and love from me (the last 2 paragraphs were written with her help).  I have to tell her and bring her to the kitchen if there's a special treat between meals (tuna juice) instead of her seeking it out.  Used to be I'd touch a can of tuna and she'd be right there.  I don't care though because she's here and she's happy and we can prevent her pain.

I prayed so hard that if I had to make a decision to keep her comfortable that I would know and be able to resolutely do so but that it please, please not be now.  There is such a thing as too much.  Losing Anna, especially while she really looks healthy minus the bald belly, is not something I would know how to handle.  Because I moved around so much and was sick I lost touch with many people and aside from family and one person Anna has been part of my life longer than anyone.

I'm still working my way through all this mentally.  Obviously.  Sorry.  I hate the awareness that someday euthenasia is going to come up and not be hypothetical.  And yet I struggle to pray that she goes naturally because I just want her forever.

Anyway, time for bed.  Or pretending.  I think that's the news up to date and I will be posting now.  I'm still spending time trying to track down other victims but what I'm learning is that they started their blog and mainly copied from me, an independent blogger.  They got bolder with time, copying from about.com, then hospital sites, a famous news organization, TV stations, local news, professional education blogs.  I had to put a limit on who I am contacting.  Larger organizations ignore my messages and really should be checking things for themselves.  I try to contact them but if it is tricky or involves signing up for something I don't.  I'm mostly interested in actual people.  Strangely although i'm a little blurry about all the contacting I've done I can only think of one other individual victim.  I'm just mad the thing is still up.  I can't imagine NOBODY has filed a complaint, although one person affiliated with a hospital is checking into legal avenues.  From what I was told I need one more owner to file a complaint.  We'll see.

Remind me to tell you about my hair.  Too much for tonight.
Copyright 2006 www.masterofirony.blogspot.com