Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Tuesday, February 26, 2013

Life is tough

So right now I am facing some of the more painful aspects of my illness.  Basically it because apparent that I could get away with saying that I was temporarily not doing well but could go back to where I was 6 months or a year ago, but 2 year is not realistic.  Two years means that for right now this is it, and what's more it's really more defining than I thought.  I've been working to accept that my memory problems, the uncontrolled mood swings, the  inability to follow multistep directions, the inability to remember all the safety things that are part of life like turning off stoves, the looks on people's faces when I talk and they can see the confusion and difficulty expressing myself.   I've come to avoid interaction with strangers as much as possible to protect myself from this and that's probably not good. 

We've talked a lot in counseling about how I need to accept help and ask for help and how I don't know how.  The first day we talked about it I wound up making the whole session stop while I sobbed so loudly and so hard that there was no talking until that settled.  I cried like that again for a day or two after it and then just cried.  I wrote a great deal, which I typically do after each session, but I knew I couldn't say things this time without that same crying so I asked Dr.  Mind to read it.  He pointed out the anger that I didn't know was there but which I can admit to myself at least is although I'm not sure why.  He also pointed out some hopelesss, sad statements that I had no idea I'd written that way.  But we talked more about it, with me crying semi-quietly through the hour and I was surprised how frustrated I am and how much it makes me feel like I don't get to be an adult anymore when I'm moving back with Mommy.  I am afraid of having no privacy.  And then I said that I realized a good reason to not be here anymore but one that also makes me feel trapped is that here I always had the space and time for suicide to be an out.  There it will be harder. I really didn't know I was holding that thought at all and it scares me.  Which is probably a good thing.  I also realized why I am still on precautions.  I have known for a long time that they worry that if I try it I will succeed.  I think partly it comes from my approach to it the last time and partly it's because I know enough about meds to use it to my advantage if I want.  Which I don't.  But I probably just kept myself on precautions forever.

While all this is going on and I'm crying randomly whenever a thought occur to me like how much I am isolating myself of late any I was and how I don't just not know how to ask for help, I don't know how to face that my serious disability that I controlled is now my very serious disability that I take 20 some pill per day to control (including vitamins but they're brain vitamins mostly) and that I am not getting good control anyway and it may be this was.  I've known for over a year that I probably need a new antipsychotic that works well with Seroquel before I'll improve and that there isn't anything rapidly approaching release and the only remaining choices aren't appropriate.  I just didn't realize how sick I would be during this time.

I feel like I'm fighting a huge battle to accept reality.  Some of it I'm doing my very best to avoid still.  Some I'm not sure I'm ready for.  Other parts I have to think about a lot more.  I need to say Yes, I'm mad that people gave me hope.  I know that is silly since they didn't promise anything but nonetheless I didn't think I'd be 37 and here.  I'm also trying to realistically look at how I need help.  The truth is while cooking is something I always enjoyed I don't do it anymore.  I have stopped because I make too many errors and melt too many things/burn too many things.  Any day now my renewal packet for my OT license will arrive.  I have to put my license in escrow.  In 2 years my national certification will expire and I won't be a licensed OT anymore.  I'll be retired in good standing.  I dread that packet so much that I'm fighting to not just avoid the post office.

I don't know.  I am cried out for today and apparently getting tired.  I just never expected this to get so hard.  I thought the hard part would be ending my career; I didn't realize my whole life was going to change.  I guess now I know.

Wednesday, February 20, 2013

Different and the same

Last night I fumbled my way into a documentary.  I highly recommend it.  It is about psychiatric care at Bellevue.  It is dramatic.  While I'm sure that Bellevue has one or more units that are like the mood disorders unit I go to this depicts more traditional psych wards as well as drug and alcohol units and a unit that is for people with both drug/alcohol and significant mental illness.  I know less about what these units are like.  There are of course things all units share.  The depressing meal cart and icky food.  (Cleveland Clinic has good food but psych patients have a seriously restricted menu (2 choices per meal) and things repeat a lot. Some meals are ok, some are gross.  And all must be eaten with the world's flimsiest plastic utensils. 

There are similarities though.  Before I found this documentary I was watching other little videos of people in psych units.  (That's not what I started doing.  I was looking for information on the old, nearly empty psych hospital on the grounds of my graduate university and found someone had taped a short video there.  I was startled that this happened as it would be impossible (nearly) where I go and so I started looking at other videos and learning about how different various facilities are.  I was surprised that even the more relaxed unit I go to is more strict than a lot of places, yet in other ways they are much easier.  A lot of the difference was electronics. We can't have any, period, although we do have access to a computer.  

And then I found this.  It's interesting to see the perspective of the doctors and to see the things that are the same and different.  The noises are the same.  I've only been there once when there was a screamer on my unit but my unit is connected to gero-psych via swinging doors which are locked.  Gero-psych is very loud and we hear a lot of screaming.  Throughout the video there is constant background noise, often a blaring TV and that's true of my unit and in fact reminds me of it.

It is over an hour long and for all I know it's completely boring.  I was very interested but I have a lot to compare to.

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Please note that any bizarre grammatical or spelling errors are brought to you by the letter H for Hot Flashes.  (Guess what Anne likes to watch?)

Tuesday, February 19, 2013

If only I remembered one more word

Yesterday was one of the more difficult counseling sessions I've had in a long time.  For weeks now I have gone there and cried while talking about my losses and feeling of being out of control and my extreme difficulty in being open to help.  I am not going to say a lot because I don't want to start crying now.  But I just don't know how to take help and take help.  I know how to give.  This other is not what I am used to, it feels really weird and it feels wrong.  Yet this is what I have to do at this stage in my life.  Yesterday Dr. Mind pushed harder and I tried to say I know I have to but don't know how.  He's pretty good at reading lips but I seriously doubt he was able to do it this time as not the slightest squeak came out. Instead I suddenly sobbed for probably 10 minutes, the kind of sobs that come from your toes and shake your whole body.  I have never done that with him.  He's seen me cry hard and we've had to stop before to let me be able to talk but never have we stopped simply because there was no way that I was calming down.  I don't know where that came from other than some very deep place since I am absolutely exhausted and have been since I got home.

I think a lot of the tears were because during that hour (and a half but the half was the sobbing time and recovery) I'd gotten a better understanding of what happens if I don't figure this out and yet it is totally opposite of what I've spent my life believing was the right way to live.  I need to talk to him more about that next week. 

But the most frustrating part is that as I finally wasn't crying so loudly that probably the person next door also heard me Dr. Mind said something that I know what supposed to help.  I even know the general idea.  But one word, the main word, didn't make it into my memory.  I think I know (I'm not giving details because the whole bit of conversation was very much drowned out by my sobs and I don't know how to explain the context aside from I cried so hard that I left with 2 hands full of used tissues, my shirt and bra were wet, I was out of breath and I still had to sit in the parking lot for 10 minutes or so to get it together enough to try to drive and I still fought tears on the way home.  I thought about calling and asking for him to have someone relay the missing word but that seemed more than this is really important so I'll ask next week.  I want to just go back Thursday but my niece will be visiting and I probably need to keep thinking anyway how I'm going to explain to him what the wall we're trying to cross is.  However, trying to figure out what words fit into that gap is challenging.

Also challenging is staying patient as I wait to hear from Dr. Brain about whether she found a way to keep me on Emsam or not.  I don't think I've conveyed my anxiety level about this to her and I've been waiting over 2 months now.  To make it worse I have a dwindling supply of patches and that means a daily reminder that something MUST happen soon.  In reality I don't need very many patches for weaning purposes but I would rather have spares than taper under pressure.  I also want to know know if my life is going to be on hold.  As it stands my life is dancing around around being on hold because I don't want to get into things I can't finish during the time I feel terrible.  She was supposed to call and leave messages after I left Saturday then try to talk to them Monday.  I still haven't heard anything and I wish I didn't know that it was completely annoying to beg several times per day to please let me know what my life is going to be.

Drat, the tears just started again as I came up with a whole new thought that won't make sense here either.  I need to write that down before I lose it.

Regardless, not the easiest time ever here.

Sunday, February 17, 2013

Please, please pray

I have gotten up from partially asleep because this suddenly feels like I absolutely need to post it.  In short Dr. Brain is still working on finding a way to keep me from changing meds.  I don't know that there is much change based on my conversations with them, but she is very good at persuasive.  My instincts are telling me to prepare for the change and be glad if I avoid it.  Once it starts it will be pretty fast, just 2 weeks or so of tapering.  That's good because it will hopefully keep me from feeling as bad as I did the last time I went off an antidepressant to go onto this one. 

I am anxious about numerous things but one stands out more than the others.  Last time my roommate was sexually inappropriate with her boyfriend on 2 nights.  On both nights I told people who promised room changes and then the next shift said no.  Dr. Brain happened to be my dr. one of those nights so she tried to fix it as well.  From the first night I stresed I have PTSD and this was triggering it.  That nurse was quite upset about it but somehow nothing happened.

I am terrified of having a roommate.  There's nothing anyone can do about it.  There's a couple private rooms but I have in theory a 1:10 chance of getting one and in reality less because they reserve them for people getting ECT (I think).  I need to be alone, whether that means private room or not getting a roommate.  We've disccuseed last year's incident in counseling many times and Dr. Mind simply says it triggered PTSD badly.  Dr. Brain knows but can't do anything and she was pretty firm about that.

I should know in a few days I think.  For now please pray that I don't have to do the roommate thing.  I know that I've had other roommates that were fine but the last one really left a bad impression.  Nice girl, disgusting behavior.


Saturday, February 16, 2013


Please Be Gentle

By Jill B. Englar

Please be gentle with me for I am grieving.
The sea I swim in is a lonely one
and the shore seems miles away.
Waves of despair numb my soul
as I struggle through each day.
My heart is heavy with sorrow.
I want to shout and scream
and repeatedly ask 'why?'
At times, my grief overwhelms me
and I weep bitterly,
so great is my loss.
Please don't turn away
or tell me to move on with my life.
I must embrace my pain
before I can begin to heal.
Companion me through tears
and sit with me in loving silence.
Honor where I am in my journey,
not where you think I should be.
Listen patiently to my story,
I may need to tell it over and over again.
It's how I begin to grasp the enormity of my loss.
Nurture me through the weeks and months ahead.
Forgive me when I seem distant and inconsolable.
A small flame still burns within my heart,
and shared memories may trigger
both laughter and tears.
I need your support and understanding.
There is no right or wrong way to grieve.
I must find my own path.
Please, will you walk beside me?

Thursday, February 14, 2013

In which there is nothing to say

I've been fighting depression. And a stomach virus. I  am not coping at all well with the upcoming move. I bravely tried looking at mobile homes.  I liked some but they are much more expensive than anticipated from our research.  By the time the  options were in place it would be hard to imagine paying the huge amount of  money.  So a contractor who has done a lot of work on my mom's house has been engaged to come up with ideas. I need to stop getting invested in anything until it what happens.  I need certainty and  so I latch onto an idea and then that doesn't work out.  And the whole thing is just  painful.  It feels like I failed.  I guess I truly believed I could get this house paid off. I was wrong.  I did at least realize that I think that if we can in any way make a separate area for me that is better than living in my mom's house, for both our sakes and expressed that. Which is a big  thing.

Mostly I'm frustrated because I thought a year would make me better and while I am better not working isn't quite the miracle that I thought it would be.  I guess I thought that it would have some effect like the medication that understand isn't available might have. I'm beginning to be more realistic about it I think.  I''m working on convincing people (so far no arguments) that I want my cognition tested. For one thing it gives a baseline since I clearly have some issues and I am at increased risk just because of how my disease has progressed.  The longer it lasts and the more episodes you have increase your rick.  I've had so many major episodes i can't even guess at the number.  Each one increases the risk of cognitive issues by 6%.  So while I still think it's very likely that something happened in my first surgery I also think that when I'm reading this stuff usually hits in the 40s to 50s it would make sense to hit a little earlier.  It could be menopause as well and that may somehow be connected to surgery #1.  Regardless I don't like it.  I also want documentation so when I go through my disability review I can show that I truly have some problems that make it hard to grocery shop, much less work.

Saturday I'll find out the outcome of project keep me on my patches.  That's also making me depressed as it is just indescribable what I'll be facing and that's an educated statement.

So  basically lots of stuff is bugging me (and more is not listed) and most of it I can't control.  That's a big issue right there:  I have too little control over things.  Even little things are beyond my grasp.

This isnot even worthy of publication but oh well.

Saturday, February 09, 2013


Tomorrow is going to be a big day.  I can't remember if I've posted about this or not but i am going to be selling my house and moving to a single piece manufactured home (aka trailer) in the next year or less.  Hopefully a lot less.  This is important for a lot of reasons but the biggest is money.  I can't afford my mortgage anymore.  When my bills are paid and Dr. Mind I have something like $250 or $300 at most for gas, groceries, medications (some of which aren't cheap), and anything I need.  I use Swagbucks to earn money for things like books, music, extra cash, and lately videos as well as clothing, etc.  Moving should cut my expenses to give me a chance of making it through months without asking my mom for help and I will be able to buy my niece(s)/nephew (don't know yet.  Another 8 weeks or so for that one.  I certainly hope they tell Anne soon.  I already gave it away to our aunt.  And here.  I'm not handling the secret well and I don't want to avoid Anne until I'm sure I don't say anything about it.  I can't wait to take her to pick out some baby fabrics.  I showed her what I have to make stuff for her this spring and she told me she wants pink.  I only have one pink thing so I'm going to try to let her pick out something for herself.  I have to do some sewing though.  I've got one cut out but I've been so  tired and tearful I've been afraid to try.  Anyway, I got side-tracked but the point was supposed to be that tomorrow I'm going to look at homes.  And that's certain to create plenty of mixed emotions which then leads to tears.

Grief has hit hard.  I have had periods when I was grieving about the changes in my life but now it is different.  Now is the time that I am being forced to face that first, it's been nearly 2 years.  I was able to work in the spring of 2011 but I was in pain constantly and Medicare changed some things and it was all I could do to get done.  It's a lot easier to think things can change when I'm referring to things as 6 months ago than 2 years.  Leaving my house is another reminder.  I bought it when I was 27.  There were various reasons, I was making enough money, I hated renting and didn't do well in apartments because of my sensory issues.  But mainly the hope was if I bought a house then I would have a greater chance of paying it off before this happened.  Back then we had no real idea how things would go; I was just 6 months into treatment when I bought the house and all we knew was that I hopefully could be stabilized but I would not be likely to be all better on the meds available then.  And now it's 10 years later, the market has changed and while I'm pretty sure I won't lose money on it I'm not certain I'll make anything either.  The hope is that I'll make enough profit to pay for the manufactured home. There are so many reasons to move and yet it's really hard to deal with.    The other thing that is a main cause of grief is that my OT license is up for renewal in June.  I'm getting constant emails and snail mail advertisements for continuing education. I don't need that.  Last year I learned about my options and we decided on a gradual giving up my license.  All along I was telling myself that I'd be surprising everyone and scrambling to get those continuing ed hours because I was going to be well enough to not fully give up the license since I'd clearly be able to work a little bit soon.  That was not true.  It was protective but it wasn't true.  In about 4 weeks I'll get the paperwork and the license will go into escrow between then and June.  And it will simply hurt.  It's also a tough time for my sister to be pregnant.  I am absolutely thrilled but it is also painful.  Of my cousins everyone's having a baby and I never will.  I dealt with this with Anne  but it's different now.  Back then I knew if I was absolutely desperate to have a child I could try infertility treatment with donor sperm and maybe it would have happened.  But as it stands it's impossible.  So it's tricky.

Grief is weird.  I haven't really had to grieve like this before.  My grandparents are gone but one molested me, one I never met, one I might as well have never met; he never quite knew whether the bigger sister was Jen or (Anne's Mom).  My grandma I was very close to but her death just wasn't sad.  She lived so long past when the doctors said and that time is sacred in my memories.  But she also made it so clear that death was coming and was wonderful and I certainly cried and missed her greatly (still do) but it was different. This is more like typical grief.  Stupid things remind me and I cry for hours.  Movies make me cry.  Dropping things makes me cry.  And then because my mood is mixed I turn around and have huge bursts of energy that I have to burn off.  It's weird and if someone were watching it would be the definition of a mixed episode.  I'm sure some of it also grief that I feel so helpless in terms of my antidepressants.  At last contact with Dr. Brain she'd had no luck.  Next week I'll go see her and know the details.  And yet I'm pretty sure I know.  She's amazing but getting a drug company to give away free medicine is a huge fight.  And I keep thinking it's possible the new med may fix some of my always-symptomatic lately issues but the process is just dreadful.  

Anyway, I need to sneak downstairs (I'm at my mom's) for water and try to get to sleep so I can handle this tomorrow.

On the really wonderful side I got home from counseling the other day and had an email from the woman who runs the organization where my baby hats go.  She offered me a class in integrating grief and art.  it's online and starts in April.  It was amazing timing, just a bit after Dr. Mind told me that this is grieving. 

Monday, February 04, 2013

Disabled, lazy, irresponsible, faking, system leaching me

Quickly, my cat is much better.  Last night she just got better.  Actually I sat on the floor and cried and talked to her about telling me when it is time for goodbye and that I want her to be comfortable and happy but also I want her here.  I cried so much my shirt was covered in snot because she'd moved past all the lines I'd set for knowing she had quality of life.  Suddenly she was purring.  A while later she was hungry.  It took my giving her about 10 choices of foods but finally something tasted good and she has gone straight forward from that point, even cuddling with me for a nap today. 

I am going to leave facebook tonight.  I may come back.  I may not.  Facebook has become something that causes pain too often.  I do not have a sense of humor at the moment about people's seemingly constant judgements about people who are on diisability, have disabilities, or use any form of public assistance.  Tonight a real friend posted something about bad attitude being a disability.  Which led to comments about how people on disability are fakes.  I try to ignore but question the morality of always staying quiet, plus it makes me really mad and so sometimes I say something.  Today I was actually proud of myself as posted that it was too bad that being judgmental wasn't a disability, huh ladies.  Now going back to facebook upsets me as I wait for the attacks.  One has come, defending herself the typical way that I honestly don't even read.  "I know/my neighbor/I've heard of this person who has nothing wrong but the doctors make up reasons for him to be on disability while hardworking people don't get it when they should."  Then there's the inevitable statement that this is fact, not her being judgmental and she has no problem with people getting assistance who really need it.  This person's page is set to show her devout Christianity.

So let's break some of this down.  First, name calling is always vile.  My calling them judgmental was as bad as what they said although I just realized this.  This is why I hate speaking up; sometimes I find I am as bad as they are.  Second, if you looked at me and knew I was on disability you'd probably think I was faking it.  I do limp slightly and in the summer my ankle brace shows.  But the things that mean I cannot work aren't visible to the casual eye.  I read somewhere last year when I was filing for social security that the Social Security Administration constantly gets people who are saying "my neighbor is out shoveling snow and walks all over town, and she's getting disability.  I wanted you to know that she's faking it and wasting taxpayers money".  It sounds like the social security people just sigh. It's called an invisible disability and doesn't mean I'm not disabled even if you think you know what you are talking about.  If you know someone  who is making tons of money under the table who is disabled via social security rules then yes, please report.  I just don't think that happens nearly as often as people think (while inserting that my ex-SIL did this with a full-time babysitting job and it infuriated me). 

Next, it is HARD to meet the medical restrictions for disability.  That's why the process is so long.  And unfortunately it is human dependent.  That means that even the state you live in affects how long it takes and even worse how likely to you are be approved without appeals.  That's why they are beginning to use computer programs to sort out people whose initial paperwork/medical records show they are so clearly going to qualify that it is a waste of time to extensively review things.  That's how I was approved.  I carried out step one, which is a very detailed report about every little thing in life and whether I could or couldn't do them.  Dr. Mind submitted a form that said much the same along with a lot of observations about my ability to cope, my ability to complete hygiene, etc. and it was pretty clear from that form that I was in very bad shape.  At the same time medical records were coming in.  Dr. Brain showed me 2.5 years of records just from her and it was 3" thick.  The records from my hospitalizations and her monthly visits with me that showed me declining and fighting to work for 10 years helped.  I don't know if she filled out a form or not.  I don't know if Dr. Mind's records went in or if any of the records regarding my asthma/allergies or ankle problems went in.  I do know that enough records arrived to show that I was clearly too disabled to work.  I also know that this is very unusual for a mental health claim.  That's more difficult to prove and they make it hard to fake.  In my case I can only say that there was a lot of evidence that I was working for many years when I was far too ill to do so.  That's true for plenty of people and I don't know what besides sheer volume, my suicide risk at that time, and that I honestly was not able to bathe more than a few times \per weeek made it work. In general after the step I experienced 70-80% of claims are determined to not sufficiently prove disability and thus are denied.  The person then appeals by filing basically the same paperwork.  Not many people are approved on that appeal (I believe 15% of those who file it) and after that they file for a judge to review the case.  Unfortunately due to backlog this can take a few years.  The system is set to try to catch the most disabled before this point but the system is flawed.  If a computer doesn't select you are truly crazy then all of your medical records, assessments by yourself and your doctors, and other paperwork is reviewed by a non-medical person.  I cannot even imagine how hard that is given that my Cleveland Clinic records alone would have run to thousands of pages and I requested they review every psychiatric record I had going back to graduate school, plus records for things like asthma and the chemical-induced nature of my attacks that was a problem in home health (people's homes) and facilities (cleaners, air fresheners).  After that voluminous review is done the non-medical person takes it to a medical person and discuss the findings.  The medical person either makes a determination or requests more information, including having you examined by a doctor working for social security.  That layer is important.  People always say that people on disability manipulated their doctors.  The thing is that the doctor (and other professionals) must be ethical.  Unethical providers certainly exist, but they also show up on monitoring if someone is referring 33% of their patients for disability or something.  And the  system prevents you from having one doctor say one weird thing is wrong with you and nobody ever questions that.   We all have a right to apply so the doctor can't stop it but they fail to provide strong support.  One reason for negative determinations is the doctor failing to provide paperwork.  I think this is how many doctors avoid supporting claims they don't agree with.  I've seen the papers; it is an immense amount of work for the doctor so they are unlikely to do it if they don't believe it is valid. Plus in many cases working is good for people as long as it is not truly beyond their abilities.  If I'd said 5 years ago that I wanted to quit trying I think I would have been strongly encouraged to keep going a while longer.  My doctors wouldn't have been able to support it as strongly then.  Dr. Brain clearly told me that she'd always known this would happen and for 10 years had documented accordingly.  That made a huge difference in how things turned out for me.  And in those years I wracked up twice I was fired, numerous job changes, etc.  Things that add credence to my inability to work.  And if they want to social security can follow up on that as you also release them to review your work history with former employers.  I don't think they often do, but I've never read a definitive statement on this.  Back to the process.......if you make it to the judge you have a pretty good chance of being approved at that level.  However by that time you have been through a financial nightmare since you've not worked in a long time.  There are further steps but I don't know them.

The thing is that people fall through the cracks.  I struggled with that when I was approved because I felt I got off easy.  I kept thinking about someone in my support group who'd been going through the process a long time.  The difference was that I had an extensive work history that she didn't have.  She'd tried working and it never worked out.  I also have my history of medication after medication being trialed to the point that it's hard to say anything hasn't be tried, and the records from 3 long psych stays in 3 years including the one with all the notes about how dangerously suicidal I was while in the hospital.  (I think I'm older by a good bit).  So yes, I was very blessed/lucky.  But I just had so many things that fell together to affect my outcome.

One of the things that was observed was that during the worst of the recession and in states hit hardest was that more people applied for disability.  Often it was people who had worked with a disability for a long time, became unemployed and when work didn't appear they decided to try disability out of desperation.  States like mine got very backed up.  One person I know took 5 years to get disability and from the outside you'd think he was pretty likely to qualify.  But the length of time also sorts out people who don't really need it.  If you have an option and know you won't be paid for 2-3 years IF you are approved which you know is not certain, you think twice.

Finally, and with no elaboration because I've said it before, SSDI is INSURANCE and NOT assistance.

I'm so tired of people.  My facebook issue has gained one support for the person who was uneducated about her opinions, none for me.  I'm now off facebook.

I also haven't eaten in an extremely long time.  I probably should do something about that.

Once you are approved you are not just allowed to dangle forever.  They classify you as review in 1 year, 3 year, 5 years or terminal/having a disability that will not change (progressive diseases of the nastiest sort). 

Sunday, February 03, 2013

Not ready yet

My ancient cat is not doing well.  I was up much of last night with her and she has improved but I'm still very worried.  She was very nauseous yesterday even on an empty stomach and vomited profusely.  Then she was more and more uncomfortable and unable to sleep because of it.  She has had very little to eat although once I started her on fluids by syringe she rapidly took to drinking as long as I keep the water near her very full of very cold water.  She is weak enough not to be able to fight me when I give her medication which is very, very atypical for my girl.  It's actually time for another dose.  The hardest thing is she doesn't want me.  I blocked off a diagnonal corner of my room for her (not that this keeps the other cat from taking her food or currently annoying her by sitting in a rocking chair in that corner chasing his own tail) and if I try to pet her she goes and sits in the corner.  So I've stopped trying to do more than pet her head a couple times when I check on her.

Last night I was up most of the night with her.  For a while I really thought she was dying.  Now I don't think so although I don't think she isn't either.  I think this can go either way.  And I am not ready.  I know I'll never be ready but not now.  I've had almost 18 years with her.  And I want more.  I do not want her to live in pain though and just now she is not comfortable and may be in pain.

I need to move my bed around so I can look at her without making her agitated which happens if I check her from the current arrangement.  Last night she didn't sleep and every time I checked her it annoyed her.  And then I have to give her medication and I suppose carry her to the litter box.  I haven't seen her go in a long time but she's not had enough to really need to either.

I will take her to the vet tomorrow if she isn't eating.  I know how that goes.  They'll want me to syringe feed her and that doesn't go well.  I've not done it with her but it really upsets pets and then they don't want to eat because they think of food and forcing.  Obviously I'll do whatever but I'm really hoping to know she's eaten something and then be able to wait another day.  I don't want to deny her care if she needs it but I also don't want to spend money on this if she's going to bounce back.  And fluids are the most important and she's doing well with those. 

Now time to figure out the sequence of making everyone mad moving my bed, kicking the other cat out so I see if she'll eat, nausea medication, and a trip the litter. 

If she is dying I really hope that I can hold her once more without hurting her.  I knew this would/will happen someday.  Somehow I thought it would involve lots of cuddling because her life has.  Instead it just makes it worse if I touch anything but the top of her head.  So sad.  She won't purr anymore and that's killing me too. And of course if this doesn't fix itself I'll have a horrible decision to make. 

Not what I want for my girl, regardless of if she bounces back (I do want that, just not the feeling awful part) or not.

Saturday, February 02, 2013


I have been taking a small dose of Neurontin for the last month to try to help me sleep.  I was on this at a much higher dose to treat akasthesia a couple years ago and while it did stop the akasthesia it also made me a zombie.  I would fall asleep mid-sentence.  I'd type emails that looked like this "Hi, alskdjfohyweruihwew" and send them thinking they made sense, my eyes would cross and so I couldn't drive and basically no matter how low the dose I was just not functional on it.  But the one thing it was good at was making me tired so this seemed to be a reasonable idea.  The first few days I took it I slept.  I may have even fallen asleep fairly normally.  And then it did not work.  I fought with it until I couldn't handle the fatigue and grudgingly got permission to take more of it. I started that sometime recently (this week I think) and was very frustrated as I saw 3 or 4 AM every day.  But then I noticed it does work, it's just not at all controlled.  There's no telling how many hours it takes and I don't think it really puts me to sleep but I think when sleep comes naturally it works like being caught underneath a mattress---WHUMP.  8 or 12 hours later I wake up.  So this is not ideal and not what I desperately want before I land in the hospital (ie something that puts me to sleep before I am ready to explode from the anxiety of being kept in bed with limited movement or activity when it doesn't matter, I can't sleep.)  Nonetheless I've decided WHUMP sleep is vastly preferable to no sleep.  Last night I was mostly asleep when it occurred to me that I'd left a light on in my car.  I traipsed outside in the very, very cold yet gorgeous night to fix this and it took a while because I had a switch set wrong and so I had to get the book out along with being tired and freezing.  But eventually I got it and came back in, wide awake.  I still was asleep in 15 minutes.

And, after all, someone who is going to be an aunt again soon needs her sleep, right?