What you should never say to your disabled child

(In writing this I am ignoring the fact that during my actual childhood my parents weren't aware of my disability.  However, the same words were used to comfort me for many years, and they were not good words, although well-intended).

I've written a lot in the last year about my hurt over the divide between my sister and myself.  I want to have a relationship with her.  I have a pathetic need for her to like me.  I have experienced tremendous hurt over and over as we've started to see ok and then we're not.

Please, please don't mention hormones, new baby, lack of sleep, stress of new motherhood, etc. as I talk tonight.  This has gone on for so many years I can't remember otherwise.

And for so long I've held onto this stupid false hope.  You see, my mother always told me that we'd grow up to be friends.  And for 32 years, since my sister was born, I have waited for this.  We never had anything in common.  I was sensorily defensive, I was hiding from the severe sexual abuse, I was feeling guilty because I couldn't protect her from it, and I was shy and awkward with people.  She was much less intense, such an easy personality.  That was true of both of us from infancy on.  She was "easy".  I was not.  I was the one who followed rules precisely (concrete thinking), who cared about grades (not that hers weren't good, but she wouldn't have cried over a B as I did.  I love more intensely and with more hurt resulting from that.

That alone isn't easy to grow up with.  But add in mental illness?  She was so often my victim.  She had to deal with my rage, my mood swings, my insomnia (we shared a room.  Maybe not the best thing).  She had to have known how jealous I was of her friendships when I had only a few friends, none of whom were friends enough to make it past graduation.

She put up with worse things.  I know there were several times I hit her.  Not just kids fighting, but I was an adult and could have been arrested for assaulting a minor.  She can, like most siblings, make me more angry than any other person on earth.  And for someone who already grew up with abuse, having a (undiagnosed) mentlaly ill sibling smack you undoubtedly leaves a scar.

Being the adult sibling of someone with mental illness can't be fun either.  I know it was scary for her that she might pass the genes on.  There are times when my illness trumps things and it's not fair to anyone, but it's the way it is.  I had to spend at least an hour of her baby shower trying to calm down from my mother's boyfriend's being obnoxious for a 2 hour drive in a quiet room. I can't help but wonder who will be there when my mom isn't, and I hate that I probably feel like an impending burden to my sister.  This may be why she resents me.  I don't need a lot of help now, and I'm fully aware that if I need help after my mom is gone that I'll institutionalize myself rather than depend on a sibling.

But those words of my mom's?  I always believed them.  I really though that no matter what someday we'd magically be friends.  For a long time I assumed it would happen when we both had kids.  My mom and her sister had 5 girls in 3 1/2 years and were/are best friends, partly because of the experience of raising all of us together.

There have been times when I questioned it, times like her wedding when I was so hurt I didn't know if I'd chose to have any relationship with her at all, ever.  But then things have improved.  And then declined.

In the last years as I've gotten better we've done better.  Sometimes.  But even then bipolar screws with me.  I assume that if things go well for a little while that things are fixed.  I am wrong about this.  I don't do a good job of seeing the whole picture, and the whole picture is this:  my sister is nice to me when she tries.  I think she sees what I want so badly  but can't give it to me.

Yesterday I realized the truth:  my sister will be nice to me sometimes.  She will be thankful if I make or give the baby something.  She'll even give me some chances to be Aunt Jen that are meaningful.  But the basic belief I've had all these years that if I just wait things will be ok just because we are sisters:  that is wrong.  As long as I say "oh, you sound tired, did you have a bad night?" and am responded to with "I don't HAVE bad nights" because I'm apparently insinuating something insulting, I can't do a thing to make that stop.   I'm just trying to make conversation, asking about my niece in a brief way since my mom had used my phone to call her about some clothes she was buying and we were on the way out the door of the store.  Nothing I ever do is going to change the nasty tone of voice she uses to talk to me at least 45% of the time when she does bother.  She's never going to initiate any relationship; I will never get an email from her that's not a response to mine.   I can't buy, beg, or just  expect into existence her love or friendship.  I can't make her believe that I'm not the same as I was years ago, or that I'm actually not just a burden she's supposed to be nice to.  And my mother's promise? That was just words.  Words I've heard thousands of times.  Words that have now just resulted in a lot of hurt.  Words that if I weren't mentally ill might have come true.  But there is too much in our past and I will never prove myself to my sister, and no wonder because she's been hurt too many times.  And our childhood didn't exactly leave a lot of capacity for extra hurt.                                            

I feel for her.  As I said, I've hurt her.  I've also apologized, and I've also never done these things when it wasn't related to being acutely ill.  I've apologized for things I said that weren't wrong way too many times.  I've done everything I can do, and I still have no clue what to ever expect.  However, she has deeply wounded me as well, and in her case it is much more intentional.  I think she feels it's better to hurt me first than to be hurt.  Except I have no desire to hurt her.  None.  Ever.

My mother, master of denial, tries to tell me that I don't hear the sneer and anger in her voice that I say I do.  My mother seems to think I'm paranoid.  I'm well aquainted with paranoid.  Paranoid doesn't come while I desperately hope and pray for the opposite; paranoia I don't detect as a separate feeling, it is just the overwhelming sense of _____________ is going to get me.  For years I was very paranoid about showers.  I was sure someone would attack me in the shower.  Childhood association, but I was living alone with multiply locked doors and  the fear that kept me from showering except every other day was much stronger than my ability to reduce it to wants or feelings.  I believed I was in danger with every fiber of my being.  In contrast I have fought every urge I have had to accept that my sister doesn't like me much tooth and nail and the end result is that no, she doesn't.  If she did she wouldn't be so scornful and resentful when I asked a simple question.

I'm not saying she doesn't try.  Being the sibling of a mentally ill person isn't easy.  Last week she didn't cancel my scheduled visit because she didn't want to hurt me.  instead she left a fairly rude comment that let me know she didn't want me to come.  I understand she did not want to hurt me, but she treated me like I wasn't capable of understanding something as simple as "I'm overwhelmed.  Maybe next week?".  And that's so unfair because I do not tromp on people's lives just because I want to.  It's just that her trying only further shows how little she wants to try.

So, all this is another promise made that can't be fulfilled.  it's another thing that is going to hurt me forevermore. And that just isn't what I need.  Yet what can I do?  Cut her off?  That hurts me. Put up with it? That hurts me.  Confront her?  That somehow would hurt me, I have no doubt.

Mostly though, I wish my mother had shut up with the hope.  This messed up relationship is one of my greatest hurts and I can do nothing about it.  I hate that.

What I never thought my blog would do

After some thought today I realized that I am mid-episode.  I knew I was, sort of, but not that it was as acute as it currently is.  I am very mixed and that can be harder for me to see sometimes, especially when it presents like it is now, as profound fatigue combined with feeling well enough to do as much or more than usual.  The doctor has been contacted, I am resting.  I suppose I should try to get in with Dr. Mind since I cancelled my appt. this week due to CPR training, but I can't really say I have the energy to handle it even then.  So I won't.  Instead I'll work hard on staying medicated and resting and keeping lots of Klonopin in my system.

I also realize that when an episode starts to get worse and I start to feel worse I stop writing here.  I make all kinds of excuses, but I think that the truth is that I avoid writing here because then the truth would be too clear to me.

Hopefully I will do some good just by resting this weekend.  I had to wash my sheets because the cat tried to puke off the end of the bed but instead hit the bottom of it.  I did learn that vinegar and baking soda does an incredible job of removing cat puke discoloration from the cover of a bed platform (replaces a box spring with memory foam mattresses.

At least I've been lucky on Ebay.  I just won 9 scrub shirts and 9 pairs of pants.  Total cost:  $3/piece.  And these are all name brands and appear to be nice.  So yay for that one.I needed some bigger ones that I can wear shirts under as it gets colder in the next few months.

I'm getting sleepy again.  I hope my sheets are dry soon.  That would be a very happy thing.

Happy is good because I feel floored by my inability to see what was going on.  I knew my drs. thought so and I agreed that it was happening to some extent but I was surprised by what the degree Dr. Mind put in his insurance report.  But he's right.  I'm not so good right now.

I hate that.

Waiting

I don't know yet whether I got charged for the stupid motel room or not.  I am too tired to care.

Today has been emotionally hard.  I've had to admit that yes, I'm cycling, yes, I've been manic and doing way, way, way more than I should, and I have now hit the point of rest or else.   I'm going shopping with my mom for a while Saturday but otherwise I'm resting.  I cancelled the painter for this weekend and told him it may be a few weeks.  I also went back to 4 mg of klonopin per day today and that made work more bearable.

And with that I'm going to go to sleep.  More tomorrow.

Long time

I can't believe I've gone nearly a week without posting.  I maybe seen what Dr Mind means mumbling about mania.  I've been living one crazy life.  Work is very busy which is never easy.  And I've had a lot of extras this week I guess.

For example, right now I'm apparently in the midst of a huge fight to cancel a motel reservation.  They are trying to tell me I should have cancelled by 4 pm TWO days before I was planning to go there, and the funny part is that they think I should have cancelled prior to actually making the reservation.  I've been on hold for a ridiculous amount of time, I want to sleep and I can't until I can take care of this.  I am NOT paying them. No way.  And now I hung up on them for putting me on hold for so long and now I have to listen to Super 8's idiotic advertisement in an insanely cheerful voice.  Now they're back to convincing me I can cancel before I reserve.  And I'm on hold again. When I pointed out that it late at night they acted stunned,like they've never heard of timezones.    And I am sooooooooooo tired.  I also don't have money to throw away like this.  Little liar said he was connecting me and now I'm back on hold.I don't have it in me to fight like this.

I was supposed to go visit my sister.  She changed her mind because she hasn't slept in 2 days.  That's fine.  I have an email from 9:15 on the 25th saying I thought I'd book a motel.  I have a receipt from 6:31 AM the 26th saying I booked the room.  And now they say I should have cancelled by 4 pm on the 25th.  You know, before I had a reservation.

The worst of this is that I stay in Microtel weekly.  I spent a LOT of money there.  So now I'm being ignored (25 minutes on hold past my bedtime) and lied to-the last rep said he'd stay on the line to connect me.  They get 5 minutes then I demand a supervisor.  Immediately.  Make that 4 minutes actually.  3 now.

This week has been like this.  I got my arm caught under my passenger seat yesterday and about removed it trying to get free (my cell phone went under the seat and I was trying to get it back).  I had a painful conversation with someone yesterday about her need for more care than can be provided in the place she lived.  This woman is my mother's age and is going to be in a nursing home.  This kills me.  I've had so many people unreachable for so many reasons it's crazy.  And I'm worn out.  I even came home and took a nap before counseling.

My mom had some weird stuff happen with my painter today and now I feel strange.  I guess he kind of helped himself to food at her house. Which is weird. I thought they'd eaten some granola bars here the other day but wasn't sure.  Apparently at her house he ate a frozen dinner. Which is bizarre. I know they don't have a lot of money but are they hungry?  Or just inappropriate.

Motel situation:  45 minutes later I was told if they can sell the room they won't charge me if they sell the room.  Otherwise I'm out $70 and several hours of sleep.  I don't have $70 to throw away.  I have medical bills.  I still have huge amounts of credit card debt to pay off.  I'm saving money every wya I can, and staying down there to visit my sister was a concession to my fatigue.  And then I said I wouldn't come to be nice, and now it's costing me $70.

Nobody, of course, will admit that it isn't right to not overtly say "If you make this reservation it cannot be cancelled".  It does say when you attempt to make a reservation for tomorrow that it has to be cancelled by Aug. 25, but this is not in any way emphasized to show NO RESERVATION is possible.  I absolutely feel like I tried to do something nice and now it cost me $70 to be nice.  I feel like I did something horribly wrong and nobody cares, and I'm so tired and crying way too hard to fall asleep, and I'm sobbing and someone is standing at the edge of the nearby yard smoking and listening to me cry and probably to my conversation.

I'm promptly working shifting my reservations to another chain.   And I need to stop and go to sleep.  Sorry for the ranting.  not what I meant to write at all.  I just can't stand losing $ like that right now.

A guessing game

I think I've mentioned on here that I've hired a wonderful, wonderful young man to do odd jobs around this house, starting with repainting most/all of it.  (It's going to be all of it, I just have to make myself find a color for the living room).  We're also going to put down flooring and replace the plastic "woodwork" with real wood.  (Clearly one part at a time here).  So he and his fiance spent yesterday doing one of the most awful jobs in the world. I cracked up as I was getting something in my bedroom and heard him mutter "rednecks did this".  In Appalachia that's always possible.....And possibly true here.   As I've mentioned before, many, many shortcuts were taken when this house was built.  I think it is 21.  When I replaced the roof 2 years ago the roofer said the roof had the appearance of a 30 year old roof and had been done wrong to boot, making me very fortunate to have no had leaks.  The room they tackled yesterday as been my nemesis.  It's been the storeroom since I moved it, still decorated in footballs.  The prior owners (read idiots) had put wallpaper directly on the drywall without sealing it, then made it even worse by applying a border over that, then another layer of wallpaper, then another border, and the top 2 were that kid-proof paper that does not come off easily.  I've worked on it off and on for years and did not get very far.  Since I hurt my ankle I was pretty much out of commission on that room since I can no longer climb ladders safely.  I can, however, rip up carpet and that's what I did today.  Then I pulled up the tack strips.  And while I had the register cover off I wore a glove and pulled what I could out of the register.  Most of this pile is from that, a few small pieces were under the edge of the carpet where the baseboard had trapped them.

Good Lord, blogger just put a picture WHERE I PLACED IT. The improvements may be actual improvements.  Anyway, care to guess how much money I earned from that disgusting mess?  Also, what you you identify?  I'll give a complete listing later.

I also find it hilarious that it yielded one Pog.  Remember those?  I don't know what kids did with them but kids I babysat in the 90s had a big thing going with them. Oh, and at the top right corner, the long skinny thing that angles slightly to the right?  That would licorice.  Which has been in my vent for at least 8 years.  Yummy.......

I need to get to sleep. Tomorrow is early meeting day for 2 hours.  Blech.  and then I have to drag all that carpet outside.

More to come.

The Somnambulist

Have I ever mentioned my sleep-walking?  It's another facet of my sleep disorder which is partly bipolar, partly trauma related, and probably partly it's own animal.  I don't do it  much anymore.  When I was a kid I did it quite a bit.  The worst was a period of time when I would go and open the basement door every night.  We bred AKC puppies and we had a litter in there, so I put quite a bit of income at risk.  Finally my father saw me go down the stairs one night and followed me and found me opening the door then going back to bed.  I have no memory whatsoever.

 In the years I was a camp counselor we used to go on short trips for our breaks.  Once we went to Ocean City, college kid style.  We checked 6 people into a room saying it was for 2.  Dive would be a compliment for that place.  There were literally holes in the walls that contained things like used bars of soap.   The room was filthy and so tiny we barely got 6 people inside of it, much less comfortable.  The first night everyone went out drinking but me.  I didn't drink and I had just had a child who slept only a couple hours a night for 11 days.  I wanted nothing but sleep.  I vividly remember that I was wearing a red and white striped tank top and black shorts.  No bra or anything.  I woke up walking down the hallway of that scary, scary place with a great deal of exposure.  It's a miracle nobody assaulted me; I would have been defenseless.

There have been other times I've done it.  Sometimes I'll suspect it because something makes no sense, but I wont' know.  Other times I'm pretty certain, like the time I couldn't find my cat in the morning because I'd shut her in the garage (where I never make her go) during the night.  No clue why.

I haven't been aware of doing it in a long time, probably since Seroquel normalized my sleep so much more than anything in the past.  Well, I've done it again.  After a dental appointment confirmed that I'm chipping teeth and had broken off a bonded repair because I've not been wearing my bite guard I pulled it back out the other night.  It disappeared during the night, which happens sometimes because I'll pull it out and throw it and since it is clear it takes time to find it.  I've searched several times and tonight stripped the bed looking for it.  For some reason I finally decided to check the thing it soaks in, and in my sleep the other night I must have filled the holder with water, added efferdent and put the thing in there and sealed it.  Excellent way to hide it from myself.  I know I woke up wondering where it was, so I did that wih no consciousness at all.

I am very talented.

That's what it is

I've been playing "name that feeling" for a while now about my unexpected positive feelings about my sister having my niece.  I finally just figured it out:  I feel this: "Thank God she has a chance to do this the right way".  Her right way may not be my right way in many regards.  But she will not ever abuse Miss Anne and that's huge.

Another strange thing?  I am terrified of men with beards in general.  It's an abuse thing.  Once Dr. Mind grew one briefly and I had a really hard time being with him.  In fact after Christmas he came in deathly ill to make sure I was ok and he hadn't shaved or anything else that day except try to stay alive.  He was so sick he came in just for me, cut that time short, and then didn't work for a week.  Even his one day not-shaven face was scary.  But my brother-in-law has grown a beard and while I'm not going to hug him, I am not afraid of him.  Apparently I have a lot of respect for my sister and her husband that I didn't see behind the jealousy.

Huh.

I don't know what this means and then a total change to Medusa meds.

So when you work as a traveler, as I have done for the last year, you have the right to convert to a permanent position with the contracted company if you complete 2 consecutive contracts (each contract is 13 weeks).  According to the handbook you are to tell them as soon as you have an offer to stay.

This week started my 2nd contract and I'm staying.  The last time I made noises about permanent placement my company talked me out of it, mainly with promises for things in the contract that only lasted one contract with my being under the clear impression it was for my time with the company.  That time though I wasn't 100% vested in staying.  This time I am.  I know this is the right place for me.  So, I sent an email about that and something else. Well, the response has been.......nothing.  So I emailed again this morning, because I kind of need a response about another question in the email and still.....nothing.

I cannot think that they did not expect this.  They've known how much I love where I am and how much my supervisors like me.  They also know that I've done what is unusual as a contracted person and that I've pretty much developed my program.  So I thought this would be no big surprise, just taken in stride.  After all I've been with them a year, will have been with them 15 months when I leave and considering that travelers have no paid vacation (I did negotiate a bit once), no sick days, no paid holidays, horrid health insurance ($3000 deductible.  I'll be paying medical bills from this last year for a very long time to come), constant fighting for mental health coverage (we're expecting to be denied here soon because I've improved, although am certainly not as well as I was in January before the PTSD and panic attacks got so bad).

So I'm stressed.  And stress makes me want to sleep a lot.  Which is too bad since I have 8 AM meetings tomorrow, Monday and Tuesday.  Tomorrow's meeting I found out about at 6 pm.  I have been so sleepy that even when I get up at 4 it takes a long time to get moving and so I really wish I'd known to stay down there.  Oh well.  Life goes on.  I just need to get to sleep fairly soon.

I learned something the hard way.  I've been so tired and really not anxious as much lately.  I'm not taken Klonopin during the day about 50% of the time where a month ago I was taking it twice during the day.  I also have not felt I needed it at night as i was so very tired I didn't want to increase my sedation.  So I stopped it and then wasn't sleeping very well.  I restarted it and am finding I sleep better and wake easier with it.  Good to know.

Saturday I pick up a prescription for a new med for constipation.  That will bring my meds to the following:

Psych meds:  Seroquel 2 tablets, lithium 1 tablet (may be 2 after Dr. Brain visit Saturday), Nuvigil 1 tablet, Klonopin 2- (probably still usually 3) tablets daily.  Also up to 4 PRN vistaril capsules that I don't need recently and 1 patch daily.

Meds to treat side effects:  2 doses of Miralax daily; 2 pills of this new med Amitza? something like that; 1 Nexium; Vit. D 2 pills to replace natural Vit. D because I can't be in the sun much and was severely deficient a year ago.

Meds to treat damaged systems thanks to psych meds:  amelioride 2 tablets for diabetes insipidus thanks to lithium; synthroid 1 tablet for the thyroid that lithium destroyed when I was toxic; 1 Vitamin B to prevent the recurrent sores on my mouth from too many years of vomiting affecting my nutrition.

Totals:  Psych meds (maximum excluding vistaril since I've not had any for 3 weeks):  7 pills and 1 patch
            Meds I take thanks to years of psych meds:  11 doses (2 are a powder I dissolve and drink)

This seems backwards....Not that I miss taking 32 pills/day most of them psych related (that was my high
and I did that for a long time) but still, the side effects are so varied and in several cases treatment isn't optional, so that turns into a lot of meds.  It's like every med you take begats another 3 meds.  Like a Medusa head......

Ouchy-and the world's most irritating phrase

Switching to home health combined with the ankle and foot pain I went through for so long/ recent stress/depression/carbohydrate pigging out has led to weight gain between being less active.  I refuse to gain weight.  It also is contributing my crazy constipation issues, which I'm about to start a new med for on top of my double dose of Miralax.  At least there is something new that will be better than huge doses of 2 stool softeners plus tons of Miralax.  So my Wii Fit has now become more than a balance activity.  This morning I did 20 minutes of aerobic exercise.  Frankly it nearly killed me.  I am sore in muscles I did not remember having.  This is a very good thing, and I love that I can do one thing for 5 minutes, another for 10 if I want, and keep changing as I get bored.  Plus it always includes at least one thing for my ankle, more if I add them.  My goal is to work up to 30 minutes at least 5 days a week, even if they are divided times.

I'm not exactly hurting, just aware of where a lot of muscles hang out.  But in the last year I have experienced quite a bit of actual pain.  My foot is hurting tonight, for example, and my ankle lets me know about it if it rains or I step funny.  That's just part of life for me.  Or last night, I had a migraine for a while.

So this patient who I really do enjoy seeing and find interesting has landed on something that makes my teeth grind, preventative device or not.  Pain is a vital sign and therefore must always be assessed.  Instead of saying no, this patient asserts that God won't allow this person to have pain.    Which just makes me grind my poor broken teeth every time I hear it.  It feels like being told that because I experience physical/psychological pain that God loves me less.

I'd forgotten this aspect of home care-you're in their home so they feel more open about pushing their beliefs at you.  I left one home last week with a paper about how to become a Christian and a lecture about not going to church.  Because someone who met me 45 minutes ago knows how to judge?  It's ridiculous.  I just smile and ignore it, glad they have faith to gain strength by, but why must they judge me?

Anyway, I think I'm getting sleepy so I should stop typing.

We'll see what is interesting tomorrow.

Telemarketers: Where the bipolar rage remains

Not so long ago I started talking about something making me angry with Dr. Mind.  He told me that he had never heard me say that before, that I have refused that word for years.  Further reflection revealed that I am terrified of anger because for so long it came out as rage.  Further discussion with my main victim and internal review revealed that I am actually not nearly so volatile and that I can probably handle anger now.

Well, I just found the one group of people I cannot abide.  I realized I yell at one group too frequently.  I'm trying to get to sleep early since I had a migraine earlier and am a bit drained from that.  Well, 30 minutes ago I got a call I could tell from caller-id was a sales call.  I ignored it.  5 minutes later another call from another state came, something about "do I have smoke detectors...?" then I interrupted.  "Take me off the list." Not 10 minutes later another call, again from a diferent state "This is not a sales call..  do you have smoke detec..." results in Jen yelling "I JUST TOLD YOU PEOPLE TO LEAVE ME ALONE" followed by "ok,ok ma'm, i'ts ok, I'll call back later.", resulting in "NO, NO, NO DO NOT CALL BACK EVER.  TAKE.ME.OFF.YOUR.LIST.OR.I.WILL.REPORT.YOU.  I AM TRYING TO SLEEP"  as she continued to argue.  I yelled.  Enough to make my cat come comfort me.  But really.....i'm on the do-not-call list.  And I have no interest in their whatever it is.  Nor do I want to talk about my home.

I swear, one more and I start reporting.  Especially it it comes when I want to sleep, which is all the time lately.

This shows why I chose my caregivers over all other, more convenient oness

Provider 1)
Last week, as you know, I talked to Dr. Body (my family doctor) about my abusive past and some of my issues identifying pain.  I felt much better after we talked and sent him an email thanking him and saying that he is the opposite of all my bad experiences.

This was his response:

You are more than welcome! It is disheartening to know that other physicians don't treat people with respect, but I try very hard. While we do have "problem" patients, you are certainly not one of them!
I'm glad that you feel comfortable, and while I might not always have an answer, I will at least listen and try.
Have a great evening!

And he does.  I used to really like one of the earlier places I saw him because the walls weren't very sturdy and if a patient was hard of hearing I could hear at least part of what was going on.  Because I've worked with the elderly for so long and know how confusing and demanding they can find some doctors I found his approach interesting, and well in tune with what can be complicated for an outsider:  Appalachian culture.  Because of poverty, tradition, etc. people here (especially those without much income) tend to eat what the land provides:  they get fresh stuff only in the summer, but while it is fresh they eat a ton of it; they get the things they can or freeze the rest of the year, and meat is either what you raise and butcher or what you hunt.  It's one of the things that makes me so grateful to have a decent income; I can buy fresh produce year round and we buy some portion of an organically free fed beef and share it every few years.  I still wish I had a way to get fresh fish, but that's dreaming; fish here is usually frozen, shipped, and thawed then presented as "fresh".  And they only get "fresh" 2-3 times per week. Anyway, I remember listening to him try to convince a diabetic patient to change his diet just a little "just have the slice of bread OR the potato, not both every day".  much more practical since those of us of the Applachian culture can be resistent to change, especially change from someone who is not local at all.  He told me another time that he had to learn that nearly everyone in this area would have elevated potassium in the summer because we eat tomatoes while the eating is good.  As a kid tomatoes every meal when in season was the norm.

But he has also tried to understand what it means to be me and what the parts of my childhood he has been told about mean.  Which takes more imagination as my childhood is so complex and the results are so mixed up in my illness that it is hard to sort that out.

Provider 2:
My dentist.  I went in because I broke a tooth.  Ultimately it will need a crown but for now we're just going to let it do it's thing and break because apparently when a camper smacked me in the face years ago the dentist who repaired it just cosmetically repaired it rather than dealing with the extensive fracturing.  Granted he probably assumed my father did it, but still.......This is not the first or 14th time that I have had a poor repair done on a tooth.  Anyway, he fixed it (no charge! which seems to be one of the things he does for severe tooth grinders who break teeth; I've had lots of no charge evening things out).  But he asked about my ankle and I told him it was anothe situation where I refused to listen to pain.  He just rolled his eyes.  Later, when I told Dr Mind about this Dr. Mind said "so he knows?" and I had to admit "he doesn't just know.  He has declared me an unreliable source and has told me that from here on out HE determines what hurts in my mouth and what doesn't, after I let an infection get way out of hand, and after I demonstrated repeatedly that I a unable to isolate pain anyway.  Dr. Mind has now declared that our goals may need to be getting me to react when things are not drastic.  No kidding.

Provider 3:
Dr. Mind.  I talked to him a bit about my fears of him leaving, as he has said this is possible in 4 years after his son graduates.  As proof that he's not going anywhere today he told me about being recruited somewhere else, then laughed and told me "actually you'd like that one; it's only 90 minutes from where you work and you'd just find a way to work that out."  Which is true, I would.  I have carefully considering the situation and I couldn't care less about being "over-dependent" on Dr. Brain/Dr. Mind or Dr. Body either.  Or really Dr. Teeth for what that is worth.

Provider 4:
Dr. Brain is trying to schedule the one weekend/month she sees pts. around when my insurance is going to lapse in November as I change jobs.  Think about that.  How many doctors?????

Decisions and Ramifications

I mentioned about 2 weeks ago that I was taking my cat to the vet, expecting to hear her thyroid wasn't working properly.  Instead I learned that her thyroid is ok but her kidneys may be failing.  They wanted me to bring her in for catheterization to determine the degree of kidney failure.  The problem with that approach is that it assumes I would treat kidney failure.

This cat is 15 years old, so not exactly a spring...kitten.  She loves food more than anything except MAYBE me, and I'm not sure about that.  I am not taking her food away from her.  When she had to be on a special diet for a few days a while back she gave up eating entirely until she got what she wanted.

I've been ok with that decision.  If I see changes like weight loss, not eating, etc. then she'll go back in.  But for now I'm fine with making her happy and feeding her more (which may kill her sooner but at least I won't have taken her favorite thing to keep her happy).  And right now she just doesn't appear sick.

Except that today she has.  She didn't pester me to feed her, and when I did she backed away.  She threw up a little earlier, which isn't that uncommon in this house.  When I did put food out she was interested, but not hungry.  She feels cool to the touch, but I think she was sleeping by the air conditioner vent.  She, initially cried when I picked her up (which she does; I assume she has arthritis) but she did purr.  She's ok but it is another clue that I am going to have to get used to the ultimate ending here:  Anna won't live forever.  I have had her in my life so long and through so many really hard years when she was one of the things that gave me strength or at the bare minimum drug me out of bed for 15 minutes a day; she also has let me hold her while crying and screaming and totally falling apart more times than I'll ever admit and she has been with me through years of my life I don't remember.  I can't imagine not having her to love.

Expectations

I was thinking a while ago about all the things I had expected to feel when my niece was born.  I thought that I was going to be so jealous as I watched all the things that I knew would never be part of my life unfold in my sister's life.  Growing up my mom and her sister had 5 daughters in a 42 month period.  I'm the oldest by 3 1/2 years.  We were also very close and had such fun together.  Spending time with our cousins was generally the best our childhood got.  It was one of the safest places, because my aunt wouldn't allow my father near her home.  So there was never danger like so much of our lives as children.  I had thought my sister and I would get to watch this with our own children someday.  And instead my sister and I had a messed up relationship and I certainly wasn't going to be bringing children into our midst.  I thought without that shared bonding there was no hope.

I thought that I could never understand the much more normal life my sister lives and that she could never understand the more challenging parts of my existence.  I thought things would automatically work out just as she wanted them to.  If she wanted a home birth and all sorts of restrictions on how she would raise her child then i was sure she'd have things just as she thought.  After all, from my perspective she bounced out of our past and landed on her feet.

I did not expect that my sister would have everything she had planned about her birth to not happen.  I did not expect that there would ever be signs that something isn't made the same way about my little niece that is there in  most babies, that my tiny, sweet, beautiful niece may have her own set of difficulties in this world.  If I did think about that I figured it would be the scary things our family already has:  frightening types of diabetes (3/4 of my mother's sons are now gone to early graves due to diabetes) and bipolar.

I may be wrong.  She may have not a single thing wrong except for a birthmark that will be so easily treatable.  Everything else that may be wrong (and I can't be more specific here right now because some of what I think is speculation based on clinical observations and I'm not qualified to diagnose, nor am I sure.  I just know I see things that worry me, and that there are things her pediatrician wants checked that may lead to other things) is speculative right now.

But even then, I have just learned that just because I got sick and she didn't and because I was more severely sexually abused than she was, that doesn't mean my sister has things easy.  Somehow I got so used fighting for everything and that not being true for her that I forgot she didn't have some magical protection from pain.  She's had to hear some scary things in the last days of her pregnancy and she's had to hear that her baby needs tested for some scary things in the next while.  If my suspicions are right she still will have to hear some frightening things.

When I am working with people who have had strokes who are feeling frustrated with life and afraid and frustrated by the "why me/why not me" conundrum that is life with an illness I very often share with them about my little brother's stroke at 8 hours old. Inevitably they are shocked, then amazed at his story of healing.  Generally they take away from that story that nothing is insurmountable and nobody is exempt from life.  Yet I had forgotten this myself.

The one thing I never dared to hope for seems to be coming true; my sister and I are at least talking like friends.  Everything I expected, once again, was wrong.

I can't stop smiling

I think I'm a bad, bad person.  I'm smiling at too much that is not funny. But it is happy.

1)  Last summer the people across the road had a graduation party with a live band.  Who kept the amps up high enough to entertain the entire town for 6.5 long hours.  I know this because I had bronchitis and had been given my only cough medication option--liquid vicodin.  The noise kept me awake and the vicodin kept me immobilized.    It was a very, very long night.  Well, tonight they set up for another "share with the neighbors who now hate you" thing. Except they got caught in a storm.  I was gleeful because I didn't WANT the same experience, but as I wrote this they started up.  However, my new windows make things so much quieter that I barely can hear and should be able to sleep.

2)  Yesterday I did an evaluation on a woman who has some dementia but not enough to keep her from being pretty sharp as long as she had written reminders of things.  She had been at the nursing home where I worked and was fired last year.  Her comment about OT?  "I don't mind you coming, but I do wish that if they thought I needed more therapy that they would have done more in the nursing home than just making me mess with that stupid putty."  I asked her about who her OTs were and they were the same 2 that I was complaining about ethrical issues with their lack of doing functional ativities a year ago.  She had all the signs of a patient of those two:  plenty of arm strength, no safety training, obviously no focus on self-care, the foundation of OT.  I haven't had very many patients who were in that particular place, so I've not heard much about their OT.  I love that the first thing I heard was a very articulate, precisely what I was saying a year go, complaint from someone who they'd consider too confused to understand they weren't giving proper treatment.

3)  A few days ago I checked my messages to find that I had a message from a company I left a few years ago pretty much begging me to rejoin their PRN (on-call) list, promising a substantial increase in pay.   Back when I worked for them they constantly griped that I was over-paid, despite evidence to the contrary.  They are considered the 2nd worst employer in northern Ohio by many people, second only to the company that fired me last year.  (Reason that company has a horrid reputation, so bad that my massive company won't staff for them?  They fire experienced therapist to replace them with inexperienced, cheap ones).  The next message was from the place that fired me a year ago, wanting PRN.  That means I didn't even wind up on their do not hire list, just their fired and therefore by the rules can't work for them/not ABOUT to work for them list.  I've smiled a lot about that message.

And comment moderation is off!

Blogger added a filter that if I understand correctly will keep the Chinese comments hidden away unless I approve them regardless of filtering.  I may be wrong on that, but I don't think so.  We'll try it anyway.

Briefly

It went well with Dr. Body yesterday. He was kind and patient and understanding and we spoke quite a bit about my history and it's landmines. I was glad I talked to him.  I also was glad that I was strong enough to do it.  I couldn't have just told someone some of that in the past.

He also said that I may have endometriosis.  Since I'm rather indifferent about pain it could easily have been something like that which caused the pain when I was sick and it could also explain my crazy recent period changes.  We'll see I guess.

And in other fun......

Any advice from "more experienced" women appreciated.......

So I seem to be entering the beginning of perimenopause.  I thought that was a ways off and when things started to change several months ago I ignored it.  Until my mom mentioned out of the blue that it started for her around my age; I think we were discussing fertility and whether my sister would have more kids.  She is 32; I'm 35 (more or less for both of us).  This last period was so different that I would have wondered regardless.  So I'm tracking and will schedule a gynecological visit for a few months from now to see what she thinks.  From what I read your mother's age is a good guide and my mom says what I'm experiencing sounds like it is starting.  (Perfectly the same periods suddenly are......exciting.  And my list for Target includes things I've never thought of needing, like overnight and heavy day pads.  I've been that lucky woman who never had more than a moderate one day, so I've never needed such things. I see it is now time for multicolored protection.

The funny this is that I JUST had an argument with Dr. Mind about this.  I tried to tell him that women in my family experience this early and that it may be an issue at some point that is worth considering rather than "so far off you shouldn't think about it", as menopause can wreak havoc with bipolar women.  It is possible that this has been some of my insane anxiety of late.  I'll talk to Dr. Brain about this soon as an "I think" and get lots of information.  I kind of just view it as a closure, the last sign that I am right about not having children.   And also a sign that if I am right (and that's part of why I'll see my gynecologist) that my sister needs to know because it may affect her plans regarding future children.

Among the many weird changes is that I keep getting heat rash under my underwires around my period.  I just took my tank top out of my suitcase the other day and today had to go buy another one.  I have to wear them under my bras until the rash heals.  Granted, it's insanely hot and I was in a place where I baked today, but the rash started before that.  Unfortunately the best treatment is no bra for a few days and that isn't happening for a few more days.

Also, just because I want to complain, I'm in the motel tonight and stuck between loud TV room (often a problem as the TVs are wall mounted and the walls are thin) and loud people.  I think I'm going to have to turn the fan on the AC on full-time so I can try to sleep as I'm TIRED.  Ugh.

Tomorrow I will have happy news of some kind.  Lots of complaining lately it seems.  Sorry.  this is what heat reduces me to:  a whiny, sleepy, sweaty blob.  And it has been so hot for so long..........

Thinking things through

I don't know how much of this I've written about here, but I need to clarify for myself what I need to tell Dr. Body tomorrow and this is my best thinking place.  So, my doctor problem.

I know I've mentioned the basics:  we weren't allowed to complain, particularly of pain, and so I learned to never ever complain.  What I've not explained is the consequences of this.

As a kid we very rarely were taken to the doctor.  Well, my sister was because she had allergies with frequent pneumonia, but I remember going to the doctor sick about 4 times as a child and one of those times was because I had a rash from being allergic to new carpet and was sent home from school until it was evaluated.  Another time was scarlet fever.  I was taken once soon after my grandfather died because of horrible stomach aches that I had for some time, and once for what was really depression but the doctor did not use that word or treat me for it, although he pretty much said that was what it was to me alone, then he gave my father some load of crap.  I was taken to the ER at age 6 after falling and spraining my wrist and moaning much of the night in my sleep, waking my parents up.  Otherwise I have several scars from wounds that weren't stitched, an ankle and knee that are destroyed from not being properly treated for injuries (all based upon that stupid ankle fracture), and memories of never, ever being home sick from school because we had to be extremely ill to stay home, generally vomiting.  I also have a memory of vomiting all over my phonics workbook, desk, and everything around me in 2nd grade, and even worse vomiting all over the cafeteria as a 6th grader.  Horrible.

I have a finger that was broken when my father threw a softball way too hard for my just-learning-to-use-a-glove self and I was not treated nor allowed to complain.  It was splinted, again because the school nurse said so, but even then I was told when I complained that if I kept complaining that the doctor would take me to surgery and break it again with a hammer.  Didn't complain about that again.

When I was 18 and needed my college physical I didn't want to see the doctor (not a pediatrician where we lived) who I'd always seen because I did not like him.  (No wonder given he could have hospitalized me with depression and instead went with what my father wanted to hear, so I lived with depression for years longer). The doctor I picked had "never heard of" a tetanus shot allergy, but since my shot records clearly showed I'd been vaccinated in half doses since my first tetanus injection he went with it.  I swelled hugely and when I went back in 2 weeks for the other half they were shocked to see how swollen I still was.  I was given the other dose, but made to sit and be monitored for an hour (great fun for the child I was babysitting) because suddenly "this is a serious allergy".  I told him.......After that I was told no more tetanus boosters, only give if clearly needed and only in an emergency room.  That was probably the first time as a young adult I understated.

In college I got sick my freshman year and ended my 10 year no-antibiotic streak.  After that I don't remember getting sick all that often in college, just colds, although I do remember having a stomach flu my junior year that quite literally floored me.  I was so sick I fainted in the bathroom in the middle of the night.  I never saw a doctor because I was too sick to walk to the health center.  At the beginning of my senior year I did go to the dr. with depression after I finally gave up on my lengthy fight to not take antidepressants.  I understated things and wound up with xanax to help me sleep. I knew this was wrong and did argue that I'd been referred for antidepressants, but they lied and said they'd check with the psychologist so I took the xanax and wound up knocked totally out.  The next time I went to the dr. for antidepressants I had a specific letter from the psychologist about antidepressants.  On the other hand, I never called the psychologist to question things for an entire week.

Over the next several years I dealt with doctors regarding antidepressants.  Aside from needing pushed to go and complain that one wasn't working (or that it had made me lose 20 lbs in 6 weeks, or that I couldn't sleep AT.ALL or or or) I reached the point where I was almost psychotically fearful of doctors.  I dreaded going to them.  I worked horribly sick many times.  I took my first 2 sick days after about a year of working and that was because of my so-called friend saying I was possessed etc. and I couldn't quit crying and therefore could not work.  Any other time I'd been off sick, which I remember only happening once when I was vomiting, and I worked on the weekend to make it up.  I had a friend/mentor/voice of reason who would pester me about going to the doctor.  Generally after about 2 weeks of incessant "go to the doctor" about 33% of the time I went.  When I finally became so clearly out of control that I needed a psychiatrist I did do that without arguing, more or less, but I also didn't argue with her no matter what stupid things she did.  When I spent those 2 days crying I had to be pushed and pushed to call her and even then she just started me on ativan over the phone.  So many times she could have diagnosed the bipolar and she didn't see me or spent 5 minutes with me and didn't try to get the whole story out.  I do not really remember how I managed to find the Guru who finally really diagnosed me (we knew but he was the doctor) and there was a lot of stuff that went into begging to be seen and ultimately I was leapfrogged over a months long waiting list because I really needed to be hospitalized but did not have insurance for psych stays.  The clinical trial was ideal for me because I had no choice but to see the doctor every 2 weeks for 6 months.  Even then I had to be more or less forced to add a med to control the severe tremors I had on high dose lithium because I didn't want "more meds".  By the end of the trial I finally was a bit better about at least talking to doctors about psych needs.  Then I started with Dr. Brain and she rapidly won my trust, so that part was actually somewhat easy.  I still had to be pushed to call her with problems, but I began to learn, and based on the clinical trial recommendations I didn't start with her until she was able to commit to seeing me for a monthly visit.  I've never been stable enough to move away from that.  I'm fine at telling her about problems now, but it took a long time to achieve that trust, and if I didn't see her so often I wouldn't be as good.  That's also an issue with Dr. Mind; we can't manage cutting back to less than weekly because I don't handle it well.  For now it's just not even something we discuss.

Medical doctors lost my trust totally though along the bipolar path.  I had a doctor I liked in the city, but he couldn't easily be my doctor after I moved away.  He also lost a lot of my respect when he and his secretary were making very inappropriate racist jokes about Muslims following 9/11, and again when he was upset he wasn't consulted when I went to a psychiatrist and also that HE wouldn't have me on an addictive med (ativan).  By that point I'd been through the clinical trial and was seeing Dr Brain and was pretty certain that the benzo was quite appropriate for me, and as it turns out I've been on benzos nearly 8 years, have seen and also had my case reviewed by several of the top experts in bipolar in the world, and everyone has agreed I need the benzos and in generally they have readily increased them, even these last months when I've been on at monster dose of klonopin.

For 2 or 3 years after moving to where I live now I floundered.  I couldn't find a doctor who would accept me and my psych meds as well as my insurance.  I literally was rejected by doctors before they met me on the basis of my psych meds.  So I used urgent care as my doctor.  Urgent care doesn't like that much.......Eventually I started seeing a doctor where I worked.  He was horrid.  He was afraid of my psych meds (which were not nearly as scary as now), so he avoided treating nearly everything possible.  I had infected cold sores on both sides of my mouth for 6 months.  I am extra-susceptible to cold sores because of an accidental exposure that caused me to get herpes on my thumb and he agreed that's what they were and even gave me a 3 day course of valtrex, but when that didn't work he pretty much refused to treat it.  After a very long time Dr. Brain got so fed up  that she wrote for a month of valtrex and finally I no longer had ugly sores on my face.  He refused to believe a healthcare professional could be bipolar, so even when I'd be wearing a name tag with MS OTRL on it he would call me a nursing assistant over and over.  And then he wound up making me so mad I complained to the medical board.  He said I couldn't take some antibiotic with depakote.  Fine. So he gave me something else that had no chance of working against a sinus infection (I know now), and when I was still sick when that ended and called in he didn't see me but prescribed the med he said I couldn't take.  I had to call and have another doctor give me something else.  This was repeated 2 weeks later.  So I reported him and he underwent a year long investigation that ultimately cleared him but certainly stressed him out and I hope made him think twice about that kind of crap.  That put me back to urgent care alone, and urgent care doctors are hopeless with my restrictions.  I've had to tell more than one to go and look lithium up in the PDR and come back when they had thoroughly read the interactions.  I've been accused of drug-seeking because I am allergic to codeine and they won't believe I can't take ibuproferon.  It's possible not everyone on lithium has the ibuproferon rule enforced, but it is an interaction and for me it is an issue because first I was on very high levels (my ideal level was just below toxic) and so anything that raised my level was out, and then after that I got toxic easily so raising my levels again was/is bad.  I also had multiple fights over things like not being allowed cold meds.

I also had bad experiences with emergency rooms.  One of them didn't admit they couldn't run a lithium level so they made me wait 4 hours while they took the blood to the city to run it and then got the results, and in the meantime rather than testing for anything else they needed to all they did was drug test (thoroughly) and do a pregnancy test.  They then realized that my lithium level didn't tell them anything since it was 24 hours after I'd had a dose and the level was useless.   Another ER was very angry that I requested a lithium level be done, depsite my having symptoms of toxicity and this is standard when any symptoms are present, especially in the summer on someone on a high dose.  When we went to that ER I told my mother who went with me to be prepared to see me act not nice because they'd treat me like crap.  She was horrified by the end, which culminated in my telling a nurse (an LPN with 1 year of training versus my master's degree) off because he basically told me I was too dumb to know what a part of the kidney he was referring to (loop of Henle) was.  I told him "given I have a degree in biology and a master's in a healthcare profession I think I do actually know that".  He then was snotty back.  I was at that ER with a blood pressure of 200/100, severe headache (duh) and very, very swollen legs and feet.  When I wouldn't take lasix (contraindicated with lithium) without speaking to a dr they marked I refused treatment and didn't give it to me until I demanded it 2 hours later, after being snotty about my coming in and then refusing care.  I didn't refuse care, I asked to speak to a doctor.  They also tried to tell me that my BP and swelling were NORMAL.  Again, Dr. Brain wound up having to treat this, but I did agree to find a primary care doctor.

I spent part of a vacation on this and Dr. Body was the result.  He agreed to my stipulations that while I know he's a doctor I have many allergies/interactions and therefore all meds must be individually looked up before I will take them, and Dr. Brain is in charge overall and if she says she doesn't want me taking something she wins, and that I expect her to be consulted in any situation regarding psych meds, particularly since she is very aware of my situation and will respond to emergency calls about me quickly.  He agreed,months but had no doctor), and then began the process for him of learning to trust me.  It took a little bit before he moved past misconceptions, but when he did he bought 100% into my treatment plan and needs.  And he has let me learn to trust him far more than any other primary care doctor.

Our problem now is that I have to start trusting him with things I've never needed to trust him with before, and it scares me.  He's treated me for years for various things, and he has even managed my psych meds for a month when Dr. Brain was sick after I got out of the hospital last year.  He single-handedly caught and then researched and found treatment for me when my diabetes insipidus was new, and that is not usually caught just by looking at someone, as he did.  He also worked very hard to coordinate a way for me to stay on lithium, found a doctor willing to work with that, and then after 2 years took over the care himself because the nephrologist was not very useful.  Since very few people with DI are allowed to stay on lithium, doing this was pretty impressive, but everyone involved agreed I needed to be on lithium.  Until this last year though we've not dealt with pain or any of numerous things I haven't moved beyond.  Since he hasn't even challenged me on things like allergies we've not had to deal with disagreements.  In fact he has taught about me as an example of a clinically complex patient who is managed atypically by letting me participate in and guide my treatments and that just because someone is bipolar they are not incompetent.

I trust him.  I just don't know how to complain well about certain things.  I can moan on here because this is a safe thing and if you are mean to me I delete you.  If he is mean or doesn't believe me (which he has never done but which I fear every time I mention pain or something that can't be seen) then I am stuck.  And that is what this very long thing comes down to:  I fear not being believed.  I also fear that what I was taught as a child is true and that I would "make something up for attention".  I don't know why, I know I wouldn't, but I still don't trust me, so I don't trust him.

And again this has clarified things for me.  Thank you.

Heat

I've made it through this summer without heat really doing much damage.  I think I've passed that point.  After sleeping practically all weekend last night I fell asleep as soon as I got home about 6 pm.  I didn't mean to, and I fully expected to wake up, but I didn't under the cat started attacking my foot every time I moved until I fed them, and then I still slept until about 5.  I can't believe how exhausted I am.  Some is because work has been intense and I'm tired from that, but really the last couple days have been nothing and the next few will be awful to make up for that.  Yesterday I had a huge drive and then one of the 2 people I went to see would not see me, so  I actually was done a bit early.  Today I will be working as late as I possibly can.

I finally found my keys on the day I was going to give up.  Apparently they were at the motel from last week all along and the person I talked to last Friday didn't look, or didn't know where to look or something.  But they will get mailed today and I should have them soon.  Hopefully tomorrow soon since I can't check my mail or get into the office after hours until I have them.  I really wish that kid had given me the truthful answer last week since I could have had them back by Sunday and would have been saved so much stress.  Oh well.

I suppose I should get ready for work.  I really don't want to.  So tired....I have Monday off but will be seeing the podiatrist,dentist, and Dr. Mind so some day off.  I hope that it is extremely hot that day though so I can avoid one hot day this summer.

Tomorrow is tell Dr. Body the truth day.  He'll be nice, but I still have looked forward to things more.  Like my ankle surgery.  I think I'd rather have that than do this.  I feel stupid.  I realize this is part of getting good healthcare with mental illness when I tell him how the mental illness affects things, but still.....I guess I need to just be grateful that I have Dr. Body who I know will be nice instead of one of the many doctors in my past who either wouldn't agree to have this appointment or who would brush me off or scold me.  He'll do none of those things, he'll be kind and supportive and understanding.  But I still feel like an idiot.  And reciting, not an idiot, just signs of child abuse isn't helping all that much.

Now I really have to go.......

Monumental

Today marks one year with the same employer.  Which doesnt big, except that its been a while since I really hit that mark.  In 2006 I changed employers after working for the same one almost 4 years. I think.  11 months later I went on disability for 4 months.  I came back and put in my notice.  So although timewise it was more than a year, it wasn't.  Then I was fired 9 months into the last 2 jobs.  So.......This is a big,big deal.

I'm beginning to think I am never not going to be tired.  This work pace is murder.  Today I have a little free time in the morning but Im still so incredibly tired that I don't want to sew or do anything.  The heat is really getting to me this week as well, which is the real problem.

I have a day off next week but have to go to the podiatrist, dentist and Dr. Mind, so big deal.  I tried to make my schedule a bit easier on myself but I did not succeed.  Things all hang on this one woman who asked last week to move to this week, which is fine, but now they only have a few specific days we can see her and those days aren't good for me.

Anyway, I should do something.

Anxiety

I woke up very, very, very anxious.  I do not like this.  And there is nothing I can do about it until I can get to work, see my schedule and get organized.

Blah.

My plans for this week

1)  Work my butt off.
2)  Scary Dr.Body appointment.  Complete with another urine culture because I still have UTI symptoms and the last culture was negative but I'd also had several doses of antibiotic.  So, this time a culture not involving masking.  Unless the symptoms are totally gone by then, of course.  Which is possible.

The reason this appointment is scary is that he doesn't know some things he needs to know.  Things like I have a really hard time with pain and that I will lie, even mid-exam, if I think something shouldn't hurt that does.  When I was there a few weeks ago with the possible kidney stone one of the things he did was push hard into the middle of my back.  It hurt, quite a bit, but I thought "that's stupid, there's no way he's really checking anything except whether I'll say anything hurt".  And it turns out that my lying then indicated one of the symptoms I did have wasn't there.  Genius.  Did this ultimately affect anything?  Probably not, other than I might have qualified for pain meds or a more serious search into what pain meds I could have if I'd told the truth.  But he hasn't dealt with me and pain quite so much and he needs to know that 1) my admitting something hurts badly means that I'm in a LOT of pain and 2) I lie about it.  The dentist has made it known that I am not to be trusted as so he does things like if I says a tooth is sore he tests every single tooth around it because once I said a tooth was sore and he did what he typically does, which is test the one behind the sore one to compare the reactions and I about hit the ceiling.  That led to the discovery of a deep cavity in the tooth I said hurt and a big crack in the one behind it.  The filling of that crack had a 50-50 chance of needing a root canal/crown, and so I left knowing it would ache.  I put up with it for several weeks before going back.  The exam made me say ouch, but not in such a painful way that he thought it was anything at all.  However, given the option of the root canal I'd more than likely need based on the ongoing achiness I went for it and it was so extremely infected that my dentist had to flush it with lidocaine solution to fully numb it and then sort of deep clean it.  He said it was about 24 hours from sepsis.  That resulted in a few things:  1) My dentist no longer believes me about pain.  If I say something is sore he suspects "about to explode".  My exams are done very carefully because he doesn't trust me. 2)  I was given hefty doses of pain meds and antibiotics are ordered to bed for the day.  3)  He confirmed what I had observed a long time ago with an independent observation that anti-psychotics (or the need to be treated with them) seem to dull pain awareness.  4)When combined with my experience with my ankle shredding last winter I finally came to understand how little i understand pain.

When talking to Dr. Mind about this a few weeks ago I said something about knowing that my lack of appropriately admitting pain probably led to some of the damage to my ankle.  I hurt my ankle going to see Dr. Mind and so he was the one who was there when I bandaged my skinned knee and then pulled off my sock and shoe and saw the damage:  a huge, purple lump surrounded by my whole foot swelling within minutes of the injury.  I needed the session so we still talked as much as I could and watched in awe as the swelling got worse.  By the end I couldn't put a shoe on, so Dr. Mind carries my shoes, coat and purse down the stairs and got me to the car.  I drove to urgent care, hobbled in, accepted an ice pack, and was taken back quickly, meaning I triaged in rapidly.  I proceeded to insist on walking and adamantly refused a wheelchair.  When I mentioned this to Dr. Mind recently he was horrified.  Apparently logic would say if it looks like that DON'T WALK ON IT".  Again, I thought I was overreacting, and I think that was precisely what led to my leaving urgent care with no pain meds and then led to nobody really seeing how badly injured it was until I finally saw the podiatrist feeling absolutely stupid but unable to tolerate any more soreness in my other foot from limping.  He saw the injury immediately upon having me stand in my bare feet so he could see how I stood on the sore foot.  Even then I thought he was making the sprain into a big deal when it wasn't until he showed me xrays with angles drawn to show where my ankle should be and where it was.  I feel fairly sure that there was a sequence of events that went like this:  I insisted it didn't hurt.  But then I refused the simple pain meds (motrin, tylenol 3) that urgent care offered and wanted something stronger (they didn't belive me about allergies and interactions) and so looked like I was drug-seeking.  I was then up all night and so Dr. Body gave me pain meds from a fax requesting them since he knows this happens frequently.  When I saw Dr. Body I remember him commenting about the severe bruising and that it was pretty bad if it went around my heel as it did, but he didn't have xrays and at most had the urgent care doctor's report and in it would be mainly freatured that I walked in, had no fracture, and refused tetanus shots and had some big huge story about needing emergency care, IVs, and specific meds available if given one.  The urgent care doctor thought this was all drama, probably psychiatrically related, but in fact it is what Dr. Brain has said needs done if I have to have a tetansus shot because I am anaphylactically allergic and the meds needed to treat anaphylaxis are contraindicated with the MAOI and can kill me by causing a stroke.  Therefore I would need the shot while hooked to an IV so if I had to have epinephrine they then could give meds to control my blood pressure rapidly.  Urgent care doctor thought I was trying to avoid the shot.  So anyway, Dr. Body was working from those notes and to my knowledge was not even made aware of the xray showing a previous fracture.  So he too under-treated and didn't send me to a specialist.  I think I fooled the PT as well, although there were weird things involved there so who knows.  I know they thought it curious that I complained of pain in a 2nd area that hurt because of how badly things were torn, but they did not realize this.

So, anyway, essentially I have an appointment which I am paying out of pocket for so my insurance doesn't find another way to deny my psych visits in which I have to reveal that first, I am a liar, and second, that I have no idea how to tell when something really hurts or doesn't, that I never trust myself, and that if I am to function I need to know specifically how to know that something is wrong and that I need checked out, because if I am left with the impression that there isn't really anything wrong I will make myself crazy and I may need specific paramters that say "problem" versus "no big deal" I will turn that into echoes of my past.

This is not an easy discussion and I am not looking forward to it.  Ugh.

Its been forever

Last week was work, work, work, sleep, work.  And this week will be about the same, so here's catch-up and I'll write when I surface for air again.  I desperately need a COTA.

I worked like 6 or 7 hours of overtime.  And I did a lot of paperwork at home so that's most of last week.

I did see my wonderful little niece.  She is adorable and is starting to be interested in what she sees.  She spent a lot time staring into my glasses and at windows and most of all at a black and white flower on her quilt.  She did tummy time and is lifting her head, although she has little control.  She's tracking and even turned her head to follow her daddy.

My cat went to the vet and she is just aging.  Her thryoid probably is hyper and so when the blood work comes back she will then probably need meds or surgery, which I will opt for.  I'm hoping radioactive iodine is an option and affordable.  This is not a cat who will take a pill daily and I'm not interesting in trying.  I know her well, it will not happen.  A permanent procedure is much better.  Although I have to find out if she would then be on replacement thyroid because that would be just as bad.  It may be no win for me.  She also has cataracts, so my cat is essentially going blind.  Getting blood was a nightmare; she freaked out halfway through the first draw and bit me and struggled and we had to start over on the other side.  I was kind of stupid though; I always ask to be allowed to hold my cats if I can because they aren't used to other people and it is less scary for them.  Before we came in the exam room I'd been holding her wrapped in a blanket because she got so scared when she got there that she pooped in her crate because some idiot encouraged their dog to check her out.  She was much better snuggled up with me.  And she did better with the blood from the blanket.  I don't know what I was thinking.

And the painting kid cancelled yesterday morning after I got up at 4 to clean.  It wasn't his fault though.  So I wound up falling asleep at 1 pm and sleeping until 9 AM.  Every so often I have a weekend Dr. Mind orders me to spend in bed.  This would have been one of them and  he just didn't get the chance because he was away.  Thankfully I did get the rest and may survive this week.

I'll write again later if I come up with anything.  Just not a lot to say about the last several days.  Work has been everything.

My poor kitty

I think I posted a few days ago that my cat has been waking up starving every night between 2-3 AM and that she's going to the vet this weekend for some bloodwork (I assume anyway).  I realized last evening that she really has been progressing this way for months and I've just fed her more.  I first got lazy about measuring out the crunchies, because after the death of my fat cat in Dec. 2008 nobody seemed to pig out too much.  Then I noticed she'd started to lose weight, so I started adding a morning feeding of a small amount of something every day.  Her weight went back to where it had been.  So I decided last night that if she woke me I'd feed her, going against every gut feeling I own, and when she woke me she was STARVING.  So I felt a bit guilty about yelling at her the other nights and as of tonight we instituted a one can for each cat nighttime feeding.  And she is curled on my lap content for the first time in weeks and I hadn't noticed the difference (she was still curling up to sleep with me, but not just coming to me for pets.) In fact my other cat is jealous and just moved from his spot on the mattress to one where his butt is against my arm to remind me HE is HERE TOO.

I'm just going to keep feeding her.  I don't know what else to do until we see the vet.  This can't go on indefinitely or my other cat will be obese (and puking up hairballs) and after losing one cat to what should have be a minor surgical procedure and instead turned into tube feeding, enemas, my baby hiding from me before he feared me pushing food down his throat with a syringe, nasty appetizer plates of atricious smelling crap that cats are supposed to love, and then when he started to seem to rally a bit (yet was still in the horrible stage of waiting to find out if the tube feeding would help him start eating or if it just delayed putting him to sleep), his liver enzymes were so screwed up that on a Tuesday night I stayed with him at my mom's (she could isolate him better than I could) and he was feeling well enough to jump into bed and spent the whole night cuddled with me purring every time I woke up, Wednesday evening I came into the room and he jumped onto the bed to cuddle, and Thursday morning my mother found his body after he bled to death overnight.  I think he said good-bye the prior to nights.  But that made me fear cat obesity, because obese cats are susceptible to the horrible falling apart he had:  a GI blockage from eating plastic (which the vet said defied all odds as it all should have passed because it was small, thin, pieces that should have gone straight through and instead tangled into a knot that then managed to hide on xrays, twice).  Then he had surgery.  But he had not eaten in a few weeks by then except via syringe and he just never started again, which apparently is a fat cat thing.  Then his liver broke down and well, I dont want to repeat the rest.  So there will be no fat cats here, and the younger guy is about to find out about low calorie food if Im going to be increasing his volume.  So now I'll do healthcare all day and all night and weekends.  Yippee........

You're lucky I did not take pictures

Tonight I walked in the door, stripped, and threw my clothes to the basement.  Then I took a shower that involved scrubbing and scrubbing and scrubbing.  Why?  Well, let's review my day.  Now, keep in mind that heat and humidity are hard on me and it was 74 degrees and so humid it was hazy at 7 AM.  This is not typical of Ohio...I called my mom to ask if we'd moved overnight.

I left home and pulled out a pen to make a note on the notebook I keep beside me for this purpose.  My pen leaked all over my hand.  Great start.

(Keep in mind that I don't call the RN unless there is a problem).

Patient 1:  I got to her house and checked her vitals.  One was too low to allow treatment.  This is a home that reeks of cat pee.  I try to not sit on the floor, but I wound up needing to either sit on the floor or make my ankle hurt, so I sat on the floor.  Where I'm fairly sure I aquired fleas, and this belief was increased when she explained that a stray cat they had been feeding was hiding in their home somewhere.  So ewww....But so far from the grossest place I go that it didnt matter.  One message to the MD and I was gone.  After leaving I called the agency RN.

Between homes I called to set up the rest of my day.  One pt. reported not feeling well and having blood sugar that was very low.  Another RN call.

Patient 2:  I think was getting sick.  She was not herself.  She hung up on me when i called to say I was coming a bit later than intended due to getting lost.  She was cranky and confused.  RN called again.

Patient 3:  Checked vitals.  One was out of boundaries.  Re-checked it four times and remained out of bounds.  Pt. also acting weird.  Called dr.  and had to leave message.  Called RN.

Patient 4:  Sounded really healthy on the phone.  He was, except for some really weird pain that was too close to several major organs and too non-specific to figure out what it was.  After evaluation I decided the MD needed to be aware.  So, another MD call.  Then another RN call.

Patient 5:  Actually did NOT need a special call to the doctor.  Praise God.  last time I saw her she was a wreck, hours from admission to the hospital and hallucinating, so this was a good thing.

Patient 6:  Did not look well and complained of not feeling well.  Was pale.  Checked vitals as I knew she had an issue with one of them before.  Sure enough, way out of bounds.  Called dr.  Spent 20 minutes on hold.  Hung up, and called back in 10 minutes to be told I was supposed to still be on hold.  As if.  Pt. sent to ER.
RN called.

Patient 7:  Thank God again, no major medical problems. Family was a little odd, so had to leave message for PT about something.

Drove back to the office, arriving there 9 hours after starting work.  Typed and typed and wrote fax after fax. Went to the bathroom, looked down, and there was poop on my leg.  Grossest part?  I have no idea whose or when it got there.  And I still had to finish working and drive 75 miles home.

When I got in the shower I discovered I had somehow written all over both inner arms during the day, probably holding a pen in a book while bending over.

I may never recover from today.....and that's not even related to the exhaustion!

huh.

Posting may be sparse this week as work is officially kicking my butt.  As in there is an official posting that nobody is write OT orders that are not dated next week starting today (not that this stopped someone from doing right underneath that), and I've been told several times that we'll be trying to interview assistants in the next week.  (Have I mentioned that I get to be part of that?  I am so very excited about this, as it has always seemed to make sense that if I am going to have an assistant that I should have some say in who they are and that they practice similarly to me, or at least in line with how I expect my assistants to be.  You know, like say NOT lying on their notes, assistants of 2008-2009...).  Anyway, I'm going to be seeing 1-3 people more than typical every day, and doing multiple evals each day and that is going to mean officially killing me.  Please join me in praying that my handyman can't come paint this weekend as I don't have time nor energy for getting the house ready and yet cannot make myself cancel on him for the 3rd week running.  I have to be up Saturday as my cat has to go to the vet.  She is 15, and I was told years ago that she had very early hypothyroidism.  Well, since she keeps waking me up in the night begging to eat (and not wanting her crunchies, which makes me think she has another broken tooth as this happened once before and THAT was a nightmare involving her being very sick after anesthesia and throwing up blood, the vet wanting me to bring her back ASAP, my running around trying to clean up blood and get her and I ready and slipping and spraining my ankle (THAT ankle).  So I'm sure I'll be out $150 or so, but I have got to SLEEP.  She gets hungry between 2-3, and I get up at 4, so when she does this it cuts my night way down.

As for the huh, I just realized that while trying to get my digestive tract unglued this weekend I gave up all vitamins and non-urgent psych/health meds, leaving me taking only Seroquel, Lithium (the main culprit in why my belly may explode), and my antibiotic (never thought I'd WISH for diarrhea from one of those things), although with lots of stuff to make my insides work. I took a Klonopin today for work, but I've only had that one since Friday, including at night and I've slept fine.  So I may have gone from needing more and more to suddenly being able to wean off, at least maybe down to a more reasonable 2 mg/day than 4.

Let's see, what else?  My head is spinning from everything I did today and everything I have to do by Friday. Who knows what is going to pop out?

There's been this rather neat little web of referrals between Dr. Mind, Dr. Brain, and Dr. Body.  Dr. Mind was so pleased a while back because he got a referral from Dr. Brain who told me the full story which I got to tell him, which was that she told the patient that he had done incredible things for her one patient (me) and that if he wasn't available to not see anyone else at the center (she knows some of them there as she was the psychiatrist there until she joined Big Hospital; that's how she became my doctor).    So that was pretty neat, for me as well as for him, because I love being the success story patient.  And because I love that he is getting praise for what he has done for me; it has been rather incredible.  (It's the team that has really been the best, but he's the day to day person in it).  Now Dr. Body is referring to Dr. Brain and suddenly was very interested when I mentioned where I go for counseling.  Turns out that when I innocently mentioned something about him to Dr. Mind that Dr. Mind and Dr. Body's father-in-law are very close friends.  How weird is that?  I met Dr. Body 5 years ago when he was in his first months in his first practice, a tiny one near my home.  I've continued to see him for since he moved north to the city a few years ago.  Dr. Mind came into play 4 years ago and knows that I have this incredibly supportive doctor who has gone above and beyond for me but we've never discussed who that is and all along there was a link.

I don't know what else.  My work computer is calling "finish something, finish something" and I know I need to be I am just sooooooooooooo tired.  But if I don't then I won't get them all done in the morning and then there will be more stress.  If I can just get 2 of the 5 or 6 ready to go then life gets much easier.