Catching up

So I haven't felt a lot like posting as you've probably noticed.  The last several days I am so tired I can't do much besides sleep.  Today I've also folded 2 baskets of clothes and washed some dishes and that is all I can handle.  I'm assuming I'm anemic and that it's bad enough to feel crummy but not enough for a doctor to feel they need to get back to me.  Sleeping all the time is pretty strange after the insomnia for so long.  But besides having had massive blood loss I just don't feel good.  Don't know if it's hormones, my unhappy uterus which is causing nearly constant cramps, or what but I'm just not feeling well.  So we'll see if they are able to help or not.  Dr. Body is out of town so I suspect his partner is only managing emergency labs.

Alex continues to fight pneumonia.

Happy stuff...my niece had a wonderful "big birthday party" (as opposed to her family party on her actual birthday).  She was soooooooooooo excited.  My sister called my mom early the morning off to make sure I was coming because Anne had asked twice already if Aunt Jen was coming.  She was so very excited to  have ALL her people together. She picked up a bubble wand (big) and thought was a mop, so she kept taking this to mop the floor while the adults discussed what she'd do.  When the cake box was opened she had to see the cake about 7 times.  She played, served all of us sand and water tea, rode the little carried her great-grandma bought her around while adults followed to help steer and carry it up the hill.  Months ago I tried to teach her to roll down a hill.  She indicated she wanted to try so I showed her again (for the last time.  that is not a job for a 36.5 (as Dr. Body's email system informs me) and then helped her roll.  One of the best pictures of us together ever was taken of that.  This is about the point that I dropped my camera and smashed it.  My mom got me a new one the next day.  I hate that but couldn't ask her not to because I love taking pictures and am kind of the family photographer and a really good deal was found.  Nonetheless it's not my favorite thing I've ever done.  Anyway, birthday party...one of the funniest things was watching her eating ice cream with a fork in one hand and a spoon in the other.  She loves sweets and she loved every bite of ice cream and cake.

She likes to master something before doing it publicly and so she didn't want to unwrap her gifts herself but by the end was tearing paper carefully but independently.  She loved her gifts.  I was surprised because I thought she'd be confused by my beanbags but instead she threw nearly all of that at or towards the containers for that purpose.  My mom was down there today and had her walking across them (part of why we did that was to help her work on gross motor skills which are not her best area.  I guess that sometimes kids who are way ahead in one area (speech) lag in another (gross motor) because they direct so much energy to the advanced area.  Since she is talking in 6-8 word sentences with correct use of verbs, conjunctions and adverbs/adjectives she is clearly a bit advanced there.  In fact my sister asked her the other day why she was upset and she said "I am frustrated".  When my sister told her it was her birthday when she woke up that day her response was "we'll have cake and balloons and candles.  Hot wicks. Don't touch"  She gleaned all that from her books.

And now that her birthday is over it is time for me to move on to Christmas.  I'm making my mom pajamas for her birthday  which has to be the next project since that celebration will be just before my surgery.  And after that (actually as soon as my mom cuts my template for me) I have to get to work on Christmas presents.  My grandmother made these patchwork-ish picnic table clothes 30 years ago and we all love the memories when we use it.  So I'm making one for each sibling and one for my mom.  Which means I have not quite 200 sqaures to cut and sew together.   I also want to make my niece some pajamas and she's getting pajamas that match pajamas I'm making for mama.  So, I will be busy during the boring part of recovery when I don't feel well enough to do much but am past sleeping all the time.

That's about it.  I need to change sheets, shower and probably sleep.  I haven't made it all night yet but I have fallen asleep at a normal bedtime once.


Copyright 2006 www.masterofirony.blogspot.com

Quickly

Michal's friend Alex is hitting the rollercoaster portion of recovery.  He is still awake and talking and trying to recover as quickly as possible, but he has been diagnosed with pneumonia and 2 infections are require a good fight.  One is MRSA and it isn't clear if he has a MRSA infection or is colonized.  Hospitals have swab nearly everyone and a large number of us are colonized but don't have an active infection.  I'm sure after so many years of treating sick people that my nasal swab would be positive.  MRSA is worse than the other bug so I'm hopeful that he is simply colonized by MRSA and suspect that's true.

As for me I'm tired.  I think I am anemic from blood loss last week.  I drove all the way to Cleveland to have labs drawn today since that's the only place I don't have to pay out of pocket.  Hopefully tomorrow I'll get results.  I slept almost all day yesterday and was very tired all day today.  I tried to exercise.  The segment I was doing is 20 minutes; I rapidly realized I wasn't going to make it and tried for 10 but was so tired at 8 that I lay down and fell asleep for 2 hours.

So better post coming soon.


Copyright 2006 www.masterofirony.blogspot.com

Alex's website

I forgot:
http://ourprayers4alex.blogspot.com/

Copyright 2006 www.masterofirony.blogspot.com

Wonderful news from Seattle

I see on the blog set up for Michal's friend that he is off the vent, talking, and doing wonderfully.  He has a long road for his lungs to heal and the hospital has restricted visitation to keep him calm and healing.  But he is alive!  As an asthmatic I can't imagine.  I haven't had a bad attack since I  have had a portable nebulizer and since I quit working in unhealthy air.  However twice in the first 6 months as I was adjusting to this I had very bad attacks.  Once I went into a bathroom at Kinkos, realized it had a strong air freshener and thought surely I would be ok for just a few seconds.  I wound up running out of the bathroom and dumping my purse to grab and inhaler.  Another time I was in the waiting room at Dr. Mind's.  One of the other therapists was using incense for aromatherapy.  I panicked and didn't get myself to fresh air.  Thankfully Dr. Mind came for me and when I used my inhaler it was nearly empty so it took a long time to recover.  There was a lot of debate over this because Dr. Mind was saying that it wasn't safe for some patients to use air fresheners, incense, candles, etc. and the person with the incense thought one person's needs shouldn't limit her treatment.  Ultimately she moved to another office and I don't think uses incense.  All scented things in the building disappeared as well.  That was partly because that attack was when Dr. Body frankly told me that those types of situations were not only capable of causing me to have difficulty breathing but I could die.  It scared me enough that I have inhalers available at all times.I don't need them often now but I don't want to have a moment where I find out why they were prescribed.

Anyway, wonderful news for Alex.  Michal is probably exhausted by this point so I'm hoping she gets some rest as well.

Tomorrow I'll tell you about the most fun birthday party ever.

Copyright 2006 www.masterofirony.blogspot.com

Bits and Pieces

I was without power for another 24 hours following storms with high winds (although after the 90 mph winds of 4 weeks ago 70 or 75 mph don't seem bad).  So I'm catching up.

I haven't gotten a progress report on Michal's friend but she is struggling and sounds like being strong for the family is very hard.  I assume that the most tragic outcome-that the young man could have died on the anniversary of his sister's death--which I believe would have been yesterday (but I'm a little mixed up because when the power came back I had a lot of emails and didn't get exactly when what was sent.)  So please keep praying for that sad situation.

I only bought a minimum amount of summer clothing.  I'm not out and about much in the summer and money is, of course, tight.  It's worked fine until this storm when ALL my clothes were in the washer, which was locked.  I wore the only shirt I had and work-out shorts that are too short for my comfort and have firewords pictured on them ($2 sale after July 4th about 6 years ago) and bought clothes for tomorrow.  Then I got home and have power.  After working very hard to find shorts that fit I am keeping these.  I'll wear them tomorrow to the party.  And the shorts will be nice after surgery because they are looser than usual (1-2 sizes bigger than my not small normal size was the best I could do).

My hyseterectomy has been scheduled.  Unfortunately it isn't until Sept. 10  with pre-op Sept. 4, so I'm going to have to live through one more period.  I hate that because, well, today is Friday.  I think.  My period started Sunday but wasn't bad until 3 AM Tuesday morning.  Tuesday and Wednesday were gory, Thursday better, today not bad.  But I had terrible cramps from Monday through last night, am still a bit crampy, and probably from blood loss I have not had any energy.  I'm trying so hard to exercise and be in really good shape by surgery but there is no way that I could have done much.  I last exercised Monday and yesterday did some yard work.  (The storm blew on of my trashcans into the road, left it's lid where it was, and the other trashcan's lid wound up going to the end of my yard to my right, while the can was in my neighbors yard the opposite direction.  The funny thing is he handed me a lid while I collected it but it wasn't my lid.  I propped it against my tree and it was picked up by someone.)  I could trying to push exercise today but tomorrow is Anne's birthday party (and I'm extremely tired) so I think I'm just going to say tI hat I can't do it with the blood loss.   I have lab slips to check for anemia in a few days.  I really, really hope my appointment with Dr. Brain is this upcoming week because I have to drive 2 hours up and back to get the labs drawn where they won't cost a fortune.

I'm actually sleepy.  I guess I'll take meds and then still not fall asleep for hours.  (I've been doing this a while now).  I'm also still hungry.  I lost what food was in the fridge (not much, thank God) but finding what I want to eat is a challenge.  What I really want is the salad I had at Cleveland Clinic Tuesday, but barring that I need to find something.

Anyway, meds and as much rest as possible so I'm in good shape for my favorite 2 year old's birthday party.  She is apparently pretty excited about the whole idea.  Probably it's the cake; the kid LOVES sweets.

More in a day or two.  Unless we get any more windstorms in which case I am moving.  We were so blessed here, both times.  My village is in a valley with high hills/small mountains surrounding.  The next village over and the larger towns in the area are not so protected and they have huge trees down, lines down, etc.  In fact going to the mall I took the more direct way and then got to a road closed barrier because they were working on a line.  2 hours later it was still closed.  Like many people who lived through the terrifying storms 4 weeks ago I am much more wary of storms and wind.  It is very easy to become frightened when you've seen those winds.  In my life I've seen them only twice.  Both at my mom's current home, oddly.  The more recent winds were worse than the first time (a little faster, a lot more destructive).  It's like a collective PTSD.  People are also saying their pets are suddenly frightened of storms.




Copyright 2006 www.masterofirony.blogspot.com

Please Pray

Michal is watching a family she loves hurt.  Below is what she wrote.  Please pray for this family and for Michal as she tries hard to support them.

I covet the prayers of all so I'm sharing the blog my daughter put together to support our family friends of 25 years.  Daughter Megan died suddenly of an acute asthma attack 11 years ago today when she was 16.  Alex is 30 and fighting hard for his life.  Please join the battle in prayer....Love, Michal

Prayers 4 Alex

Alex Wilson suffered a severe asthma attack on Friday, July 20th at around 1:30 a.m. and is fighting to get better, with the help of a ventilator, great doctors, a ...

ourprayers4alex.blogspot.com

Copyright 2006 www.masterofirony.blogspot.com

Bye Bye Uterus

I saw the doctor today.  I will be having a laparoscopic hysterectomy in 1-2 months (probably, depends on scheduling).  There wasn't much to discuss and she didn't even do an exam, probably because my cramps had landed on the severe range.  Apparently (this may be TMI) passing large clots triggers the same contractions as early labor.  Let me just say I am very sad about missing the chance for a child and very not sad at missing pain beyond that.

It's funny, my period is the heaviest it has ever been, sort of like it know this may be the last time.  I have a feeling I'm going to be needing a CBC after this. Because I am a biologist at my core I have developed a rather sick fascination with what is going on.  I won't tell stories because they are gross, but I won't be forgetting this.

I was very glad that she's going to work with me on pain management.  Last time I had morphine in recovery, then vicodin in my room.  The problem is vicodin is every 6 hours and most people can be supplemented with motrin.  I can't have anything but morphine, tylenol and vicodin and you can't mix tylenol and vicodin.  When my pain became severe in the middle of the night I had to wait 3 hours for vicodin because "using morphine is going backwards".  Which I appreciate but it didn't help.  So we're going to do something, even if it means using more morphine which I suspect would keep me in the hospital an extra day.

One thing, I've been praying that she not do the vaginal procedure she'd mentioned before.  She's decided that there's not enough space and would be more painful.  But that is so good.  I am keeping my ovaries and one of them hurts.  Nothing was there but cysts on my fallopian tubes a year ago, but if she's taking things out I really want her to be looking around for any other culprits that may have popped up in the last year.  It's just been something I wasn't at peace with and I am glad she'd already decided.

I just hope this happens before the end of next month.  I'm so over this.

On the happy end I was able to get the materials for my niece's Christmas present today and they were drastically on sale and then I got 20% of everything.  I'm making her this shopping bag/vegetables/eggs/treats food set.  I'm also going to make pajamas for her and matching ones for her Mama.  I'll probably make her several pairs as I have a couple of yards of flannel I have for no reason that she'll like.

She has been skyping with my mom since she was quite small.  The first time we did it I remember my mom telling me that Anne would eventually just shut it off because she knew where that button was.  Well, today my mom had already skyped with her a few times and had gotten off the phone when the skype noise sounded.  She decided to not answer but then it went again so she did.  My niece was there saying "How was your day?"  My mom talked to her for a minute and then my sister walked in and said "now when I left you were playing with your animals...."  Little monkey can operate a computer and call grandma whenever she wants.(Not that this is allowed, but it is funny she did it.  I guess she's really excited about her birthday party this week).

I have to take meds.  I was doing something and totally lost track of time.  Oh well.  I'm sure tomorrow is a rest day anyway.

Copyright 2006 www.masterofirony.blogspot.com

Penn State's Horrible experience and my life

I'm not much of a football fan.  I follow Ohio State and check scores throughout their games, and used to watch sections when I had a TV.  That's it.  I've seen many Ohio State/Penn state games and because part of my life was in the Penn State zone I always like that game.  I admit, I also thought Paterno was amazing.  Not many of my 85 year old patients are doing much activity.  Even fewer of my hip replacement patients are coaching anything within a few weeks of surgery.  Penn State is still not Ohio State.

However, it's hard as a sexual abuse survivor to have no followed the scandal there.  I admit to mixed feelings; the camp I worked at was near Penn State and I have seen the statue that was removed, the benefit that Penn State's image has on a rural area, and the sheer love of the game in those mountains and valleys.
Yet like so may abuse victims I am glad to see action taken.  It is sad that Joe Paterno made horrible decisions.  I know that it was at least partially a result of his generation.  But he ignored that children were being raped.  If he had only done something substantial I would say he is a victim.  But he didn't.  And that makes him like my own parents.  I think Paterno was a genius.  He probably knew football better than anyone.  He also was a good politician, necessary in that world.  But he neglected to acknowledge responsibility for doing anything for those kids.  Last fall I remember so little and this came to light when I was lithium toxic, but I do remember when he announced he had submitted his resignation but not until the season ended that it was way too little, way too late.  Thankfully Penn State did agree there.

Things seem to be changing in the world of sexual abuse.  I don't know if more knowledge has come from psychologists, if the cultural stance is changing, or if the world is just starting to catch up, but I think that my niece's generation will not face what many in mine did.  One of the telling signs is the recent re-definition of rape to include any attempted penetration of any orifice.  Period.  And after so many years of feeling like saying "I was molested" was not big enough for what happened to me, I will admit being able to say "I was raped" helps somehow.  It acknowledges the severity of what happened to me.  Many, many children are molested usually by touching, once or a few times and it is traumatic and terrible.  Yet I never fit into that group when they said I did because so much more happened, so many times.  Essentially I was raped several times a week for 9 years.  It was all I knew.  It's been really hard in the last month or 2 to discuss this with Dr. Mind and learn to come slightly in contact with my feelings.  But the truth is that because an adult (2 but we've only covered one) chose to bring things into the life of a child who had yet to take a step, I grew up not knowing that it was wrong or bad.  I hated it but I thought it was my fault.  I didn't fight or resist or say no.  I was too afraid.  But I see now so much more clearly that he trained me to think this was normal so that by the time I might have seen it wasn't it was too ingrained as part of my life.

I know something of what the victims in this mess went through.  And I know that nothing will ever replace the part of you that you lose the day that you realize it is better to go away inside your head and not pay attention.  With very, very hard work of the sort we've done lately you can deal with some of that, but nothing is ever going to change what happened to me.  I also know that in my life several adults at a minimum knew and let it happen.  For the Penn State victims multiply that by a thousand, because the adults that knew about them were powerful people.  In my case my parents and grandmother were really powerless themselves.  Accepting that has been really hard, but psychologically none of them was able to fight back.  None of them knew what to do and all of them believed that a threat to stop would suffice.  They didn't have the legal recourses available now, and culturally abuse is somewhat accepted in Appalachia.  Everyone who could have saved me was involved in/had been a victim of abuse themselves.  I'm still mad at them, but I understand now that they did try and they believed in what they did.  They just didn't know whata molester will do.  Another thing I had to realize that I struggled mightily with is that my grandfather used me, flaunted what he was doing, and made me think it was because I was special.  He was a local politician with some power.  He had rounds to make daily and usually took me with him.  Everyone made a fuss about me so I enjoyed it although I was well-known for "bashfullness" with men.  What nobody caught on to was that they were all thinking how neat it was that he was such a good grandfather, always bringing that little curly haired girl with him when he was taking advantage of the alone time to molest me.  I was small for my age and so I looked younger and I think that made him look even better, like he was taking care of me.  Not so much.

I don't know how the victims at Penn State felt.  I know the terror they probably felt every time they saw Sandusky, especially if they were alone.  I know the guilt they felt and that they probably felt the same thing I did, that they could not tell because it was their own fault.  Perhaps Sandusky threatened them.

Paterno did not do what he did alone.  He is not ultimately responsible for it all.  But he certainly did own plenty of responsibility because he was in charge and he ignored it.  For that he does not deserve to be villified but he does not deserve to be hero worshipped.  This mistake undid years of being a myth.  He wasn't a myth, he was a man who made a mistake that allowed boys to be terribly hurt both physically and psychologically.  I'm glad that the statue is down.  I'm glad the NCAA has promised that tomorrow's announcement of sanctions will be very severe.  I honestly think that taking every victory alway from the time he is known to have been told of the abuse would be a very fair punishment.  Why should Penn State have all those wins when they were being guided by someone who broke the law?  I'm a mandated reporter.  If I know you are abusing your kid I will turn it in.  Not because I know how it feels (although that helps), but because it is my responsibility.  I've made numerous adult abuse calls over the years.  A while back we had a younger patient who had her child removed around the time we started seeing her.  The child was returned a few days before I went out.  While doing my routine I found used, open syringes on the bathroom floor.  The child was removed within 24 hours.  The child deserved this.  Imagine catching HIV as a young child because you stepped on a needle getting out of the shower.  I felt awful because I knew this call was going to take the child away but it is what you do as a mandated reporter.  I filed at least one report when I was a camp counselor.  I hated it but again, it's my job.

There is no doubt Paterno knew he was a mandated reporter.  It's obvious when the make you go through training and also you have to jump through hoops to prove you aren't a convicted abuser before you can be involved with children.  And he didn't report and as a result many children suffered.

There is an important precedent to be made here:  Any person or institution who allows children to be abused should be held accountable, be that a major university, a doctor's office, a school, a camp counselor, or someone providing eldercare.  Accountability across the board will reduce victims and will help more children to grow into adults who take 36 years to learn to say that it was wrong and I am angry or that I have negative feelings about the abuser.

We'll see what the sanctions are but I am hoping they are are harsh as threatened.  I hope the erase all victories since Paterno knew.  That would erase his most-wins status.   I hope bowl titles are stripped and that Penn State will not be playing in bowls or on TV for several years.  I hope that the sanctions do not ruin the lives of the players who did not do anything wrong.  I hope those players are still able to play sufficiently and that NFL coaches pay enough attention to them that a promising athletic career is not lost to errors made while these players were children.

Most of all though I hope this whole event helps Americans see why we have to get sexual abuse of children to be accepted enough as a crime that people know what to do and do it to prevent more of these stories.

Even more than THAT I pray that these victims recover.  It's a long, hard road but it is possible.  I'm not there yet but I am much closer than 6 months ago.  I hope they are able to be proud they faced down the man who assaulted him and that they told their stories as many times as needed to get Sandusky off the street.  I pray that someone offers them top-notch treatment and that Penn State pays for this.  I pray it can remain not a sensationalized story with books and a movie but instead a lesson on what happens when nobody knows what to do or does what they do know to do.

And I hope Penn State is able to re-discover and build on a special community.  For so long that community has been based on the love of Paterno when it needs to be a love of the school and what that stands for rather than just a man.  If ever a story of how fallible humans are existed, this is it.



Copyright 2006 www.masterofirony.blogspot.com

Oh, this is embarrassing

I can't remember if I've even updated on here to say that I am going to the gynecologist Tuesday to hopefully commit to the hysterectomy and get the process involved in my having surgery started.  Dr. Brain helped and Dr. Sweetheart gave permission for me to come so I am hopeful that she'll agree that waiting to have this discussion until December when I'll have had multiple paralyzing cycles, lots of pain and will probably be pretty anemic doesn't make sense.  After my last period I'm actually afraid of another, which is expected at any moment.

I'm sure I've mentioned that I have been walking long distances as often as possible to get exercise and work off agitation.  During the heat I've changed to DVDs.  I have a bunch of Leslie Sansome Walking DVDs and they are nice, especially after someone in the hospital told me to mute the video, watch for what they are doing and listen to something else.  Tuesday is likely to include a very thorough pelvic as she would like to try to do the surgery v*agin ally but I haven't had a baby which is the usual requirement.  So she'll need to dig around to find out if there is space.

It has occurred to me that if I am having surgery relatively soon I need to get in shape.  This last year hasn't exactly been my most active and now that we decided that sleeping is priority and I need to sleep at whatever hours I can that I've been less active from that.

Anyway I didn't feel like a walk tonight (cramps and they can be so bad I double over so I'll be inside a few days) but I popped in a video and did a 1 mile walk cardio and then 2 miles of heavy calorie burn.  No problem there, it was a good workout.  But I am STUPID.  And Dr. Sweetheart is going to get a good look my stupidity.

I don't own many clothes because I've gained weight, tried to lose weight, etc.and didn't want to spend money on clothes when I hang out in tshirts and pajamas a lot because I am in bed a lot.  So I exercised pantless thinking that I'd just save that bit of laundry.

Too bad I have fat thighs and now have blistered fat thighs.  Right where Dr. Sweetheart is going to be looking.  I put diaper cream on them and will keep doing so and maybe I'll be fortunate enough to not have blisters in a non-blistery place by Tuesday.

So, so dumb.

Copyright 2006 www.masterofirony.blogspot.com

Two

Two years ago today was a day I dreaded.  Too bad, because it turned out to change my life.  I knew that 2 years from tomorrow.  But until then I was afraid. I was so excited; I had a meeting at work and passed my boss a note that if my phone went off I had to go take it because I was going to be an aunt any minute.  The C-section was delayed a bit and so I wound up seeing patients and explaining I'd have to answer phone calls.  I still missed it and so there was this big pause and my mom said "You have a new.....................niece.  Her name is "anne but way more unusual" and she is big and chubby with the sweetest face I've ever seen on a newborn.  I called her back and "her name is what???" and then fell in love with it.  It is perfect for her personality.

I am referring of course to being an aunt.  Those who were around then will remember my dread that I wouldn't have any relationship with her because things were so complicated with my sister.  Instead I have this wonderful, amazing, loving, funny little girl who actually gasped in delight when her mama surprised her with me on Skype last week when Anna thought it would just be my mom.  She lit up and yelled "Aunt Jen!".

There is just so much to love.  She says things that are so funny that you wonder where on earth she learned that?  She can sing the spelling of her name but is insistent that one letter be substituted where it is not needed.  She figures things out.  She kissed my mom's cat on the lips.  She tried to pick up the 70 lb. dog when it was in her way.  She has elaborate tea parties for her dolls and stuffed animals.  She tells us she is happy.  I've never met someone as easy to love.

During some of the worst times this year, not the worst of the worst because I don't think anything would make me smile, Dr. Mind would make me talk about her because it was the only thing I would show happiness about.

Her existence has fixed my problems with my sister.  In reality my sister has become the best person not a dr. in my life at intuitively helping.

She has a celebration today with her parents and the "cake, balloons, and candles" she requested, and then the rest of the family will have a party next Saturday.  I can't wait to see the look on her face at 2 dozen bean bags which she won't know what they are or why I'm giving them to her.  It's a pretty odd gift if you don't know what they are.  Knowing her though (and that she is trying to imitate good social skills) she'll sort through them and show everyone the prints she likes.  Later we'll show her how to play.

I love her so much, more than I even knew it was possible to love someone.  Dr. Mind pointed out that I am going to get to watch her grow up and see what childhood is supposed to be like versus my memories of trauma.  And because she is a good bit like I was at the same age developmentally I can kind of see what was taken from me.  Which probably sounds sad but really is something that is good.  It is good to see that things that I really hate about myself probably were things I developed to make my life survivable.  Sometime soon I'll write about what I have learned in the last few months and especially the last month, about so much. I have finally learned more about what I lost permanently because of what happened, and that the feelings I've refused for so long were real feelings.

I am just glad that this is a happy day instead of the day of pain I feared 2 years ago.

She is so awesome.


Copyright 2006 www.masterofirony.blogspot.com

I hope this isn't forever

Panic attacks tonight.  and not just one unfortunately.

Trying to live on a percentage of my old income that is less than the percentage of my old income I paid in medical bills last year upsets me every payday.  I check to see my check has come through and then I get freaked out.  This month feels worse.  I have money I got from insurance for food loss.  (I've spent some of it but no matter what I need groceries.)   I need an oil change and new headlight.  It would be best for me to stay in Cleveland next week the night before my gyn appointment.  And by now my money is long gone and I haven't paid for Dr. Mind, gas, the meds that I have to pay for, or those random things that come up.  It'sreally hard.  I have some things to do to make this better; I have scrubs to sell to consignment.  I have some gold that is worth something that my father gave me.  I have a ring of unknown quality that probably is worth a little bit.  I have a few savings bonds.  I have change to cash in.  I try to hang on to these things because it's going to be a while before there is any way I can make money, and so I don't want to use the last options I have.

This is just hard because my mom is partially (a lot with big things) supporting me.  She just transferred my big credit card balance to a 0% offer she got and we're going to both pay until it is gone.  Aggressive but once my credit card don't have balances I will have more money.

I think I'm ready to go to weekly visits with Dr. Mind too.  That will save a TON of money.  Since my desire is partially motivated by money it may not work out but I think it is time to try.  He may want to continue until surgery if that is decided and will be soon but I think it's time to try it.  As I think about it though I am soooooo ready to try weekly again.  And since I'm able to whine about the weather keeping me prisoner in my house I think we're ok for handling things.  But it's a big step.  We'll see.
Copyright 2006 www.masterofirony.blogspot.com

Project No More Uterus, and a couple other things

I heard back from Dr Sweetheart's office Friday.  Apparently she got my message and what Dr. Brain sent her (my impression is Dr. Brain was pretty supportive of doing this before it drags on and I feel bad and have to live with the anxiety, plus nobody should be scared of their period.  Period. (ha).So I go to see her the 24th and hopefully get the process started for Project No More Uterus.  It will take some time to get scheduled and everyone on the same page because of my issues with MAOI not mixing well with anesthesia.  If she decided we'll schedule surgery Tuesday I will not really know what procedure will be used until the anesthesiologists put together their plan.  That is hard for me because I really want to know what is happening so I can get used to it.

This is a very silly thing to care about but I do  Just as one reason that we're trying to get this over with is that I am going on a very much needed vacation in November and don't want to deal with a bloodfest on two 12 hour car rides in 8 days, plus the pain that goes with that or really with any time spent sitting too long, there is one other day that I want to be well enough to go to the Selah concert  I've been looking forward to this for months and now it is in the range where I suspect I may be having surgery or recovering.  I hope surgery is sooner and my having had the date wrong helps, but the reality is that this opportunity may not happen.

On the other hand, speaking of Selah, this is their new project which they wrote and then filmed in Turkey.  It is gorgeous.  Click on the video to go to fullscreen which I would recommend.

Copyright 2006 www.masterofirony.blogspot.com

Still ok, probably better than ok but tired.

I saw Dr. Mind today and we talked about what I wrote and about my time spent yelling, crying, and calling someone who has been dead for a long time names.  He seemed pretty happy with this but did not make as big of a deal about it as I expected/maybe hoped.  I think he was just distracted today.  He read what I wrote and we discussed it  and that doing this has taken 36 years.  We talked about how much safer I feel now than I did a few months ago (fear of people, not suicidalness).

It ended weirdly though.  He was giving me a few options about whatt to do next and I really didn't know, still don't know.  I don't know if we need to cover one last thing or not.  I also am going to the gynecologist the 24th and don't know what I'll need after that.  He kind of pushed and I told him that I wasn't being resistive, I just really did not know.  He said that he didn't think I was being resistive "this time'.  I think..  Which confuses me as I have complained and sometimes cried and begged not to have to do something but I've done what he has asked.

I think he's feeling awkward about transitioning to weekly visits.  I'm anxious about this and tend to think we need to know what is happening with surgery before we decide too much.  However I also feel ready for weekly to start fairly soon.  I think I'm going to decide that i need to cover one more topic, my father, and probably write his "I hate you" letter but it's really nearing the end of this and I think he's anxious about my reaction to cutting back one of the only things in my life that is routine.  But I really can fill that time.  I'm making Christmas presents this year for obvious reasons and that alone will be a lot of work over the next few months.

Anyway, it went ok, I tend to think I misheard him but will ask next time, and I spent the afternoon and evening canning beans and just got home and need to feed my cat, consume more water (I personally am contributing to this drought) and finish Anne's birthday present.  I Skyped with her tonight.  Her face when she saw me (a suprise) was precious and if you ask "are you having a birthday this week?" she says "yes!".  If you ask how old she is going to be she holds up two fingers crossed like when you are lying but it's ok and says "Two in July!"  She asked to skype with Aunt Jen again after her bath.  She's not seen me much and until it cools off that will remain true.  She is starting to independently play in her bedroom which is too hot for me to be in on these awful days and she's too little to understand why.  Hopefully by fall I'll be sleeping normally and will get to see her more.  She is the best thing I dreaded having.  Dr. Mind said the other day that I will get to watch her and see what the childhood I should have had is like.  We've talked a lot about what my reaction to someone hurting her like I was would be and I have no response other than I would kill anyone who hurt her.  And I am pretty sure I mean it.  But as it is she's a darling, trusting sweet little thing.  And I can't believe she is going to be TWO in 4 days!


Copyright 2006 www.masterofirony.blogspot.com

I'm ok

I'm sorry I've been so quiet.  I owe emails to a few people and I will post about what I've been doing and learning the last few days, but right now I just feel too tired to make sentences.  This has really not been as bad as I as afraid of but it hasn't been easy either and has involved a lot of time spent muttering to myelf, repeating over and over what I feel until the word sounds less awful.  There has been swearing and name calling.  And there's been exhaustion and little sleep and lots of nightmares.

 

So I will post soon but it may not be until I've seen Dr. Mind because I want his reaction before anything else.  These are still very uncomfortable thoughts for me and some of it just feels wrong even though I think it is just what it is.

 

 

Finally feelings

I'll say more later but Dr. Mind and I worked today on feeling something.  I just don't know angry.  But it is suddenly ready to come out and I am writing and crying and suspect this will continue for a few days.  So prayers appreciated, I'll say more later.  This is weird.

Copyright 2006 www.masterofirony.blogspot.com

Maybe I should have thought more

I'm all about being an informed patient.  In fact that was negative feedback I got sometimes, that I explained too much, when I was working.  I also had to watch because the patients that were hardest were the ones who repeatedly "forgot" what I told them but continued to ask and then not listen to why we were doing whatever.

However, I maybe know more than I wanted to about hysterectomies.  I anticipate that I may get an appointment with little time to prepare (wait list type thing).  And because tricky decisions have to be made I need to know about several variations.  The trick is this:  Nobody wants to give me a general anesthetic again.  However only one type of hysterectomy can be done without and it is not done with a spinal all that often.  That way is vaginal.  The other thing about vaginal hysterectomies is that they are typically done on women who have had a vaginal birth.  That, clearly, is not me.  So when I saw Dr. Sweetheart she was speculating that she may be able to work around that to allow me to have a spinal.  I have a deep terror of these. Like terror that says "I will never do that", except that I need to protect my remaining brain cells.  I think it is a leftover from childhood when someone sneaking up behind me was bad.  I can tell one story that alone probably explains this.  We had a canoe (I don't know why exactly) and would go to the back-up reservoir that was a few miles from my house and canoe.  The rules there were that it was to be used for small boats and fishing only, no swimming.  Well, my father believed rules didn't apply.  He enjoyed shaking the canoe to pitch us out, or when we stopped for a break he would throw us in.  One day he hadn't thrown me in and I thought I was free and clear when he managed to sneak up behind me and throw me down in shallow water where I landed on a sharp rock.  It was one of several times people didn't get stitches put in because there was no good explanation.  I am sure I have a decent sized scar back there but can't see it.  So that's what someone coming up behind me is like.  (Incidentally I got so good at not being tipped from the canoe that years later as a camp counselor I took a boy who had cerebral palsy out on the fishing pond in the canoe.  We did fine until he lost he balance and slid off the seat, landing with his feet in the air.  I decided trying to paddle back in with him like that risked tipping with him landing face down in really gross water, so I walked to the front, picked him up and back on the seat and then went back in.  The other counselor was sitting in his canoe, ready for a rescue.  He just said "HOW did you DO that?" and I smiled.  I like-liked this guy and I figured mystery was a good thing.)
 
Anyway I am also worried about the vaginal approach causing PTSD as vaginal pain is not something  I handle well.  And then I read about how there can be a lot of repositioning to open things up as much as possible so that the procedure is essentially done in the giving birth position.  That would be increased for me since I haven't given birth.  And while Dr. Brain promises I will be aware of nothing this sounds tough, as does having vaginal packing.

I also kind of would like them to be able to look around thoroughly since I am keeping my ovaries and have pain there which probably stems from my uterus but mig ht not.  The procedure that is being considered is the only one that doesn't let them look around.

Now, there is no certainty that this will be the procedure.  It depends on whether there is space with the tighter ligaments I have from not having babies and the size of my uterus.  If given 2 choices I'm likely to choose the other unless it is open incision versus this and then I have no idea.  I am hoping that this way doesn't work but I also don't want the whole big incision thing.  Laparascopic would be wonderful but not sure if it's an option for me.

All that I know comes from a brief conversation, not really planning anything.  But I want to be able to ask questions so I've done some reading.  I still am very nervous about that spinal though.  Even though in ways it has advantages, like I would not have pain for some time post op.

I have trouble thinking of any of this as different from the last year's laparoscopy.  But it is different no matter how it is done.  Things are cut and sewn, blood vessels are removed and cauterized, it sounds like in my case my cervix will be cut out and replaced with an ending formed from ligaments or something.  There will be more pain.  I don't know how long I'll stay in the hospital; most go home after a day or so but I had an extra stay for the last surgery and this time we have to be even more careful in the monitoring to prevent anything like that.  So I may be in the hospital a few days.

In some ways I always want to just say "just do the fastest procedure" which is an abdominal incision.  I can deal with the recovery and less anesthesia is best.  The simply truth is that they could give me something to keep me out of it during the procedure and it would be one of the same drugs as last time.

There's also the small issue of whether I can even have a spinal.  (I kind of hope not).  I'll be on the special anesthesia protocol but MAOIs and spinals aren't good friends.

I just now have too many images in my head.  And so, probably do you!


Copyright 2006 www.masterofirony.blogspot.com

Disconnected

This post is all over the place, so be forewarned:

• I sent in a computerized request to see Dr. Sweetheart sooner.  I got back an appointment for Sept. 11.  I called the office where I was given a hard time and the receptionist wouldn't believe that Dr. Sweetheart hands regular gyn. issues for me.  (Never mind that one of the things she does is difficult hysterectomies......).  So I was told Dr. S. is out of town this week, I CERTAINLY can't come next week and they'll decide if I can have an appointment after she gets back.  Don't call us, we'll call you.  Annoying.  Like I'm making it up that she's my gyn.  At this rate Sept. 11 might be a great day.  Problem being that if it is that far off then surgery probably can't be until December because I will be on vacation in November and want to feel good enough to have fun, and also good enough to handle the 12 hour car trip.
• I'm spending a good bit of time working on my niece's birthday gift.  My sister asked me to make her bean bags.  I've got 7 big ones done.  I'm hoping to make 12 big, 12 smaller and a few bean bag animals.  We'll see.  It's really a fast process but I have a short attention span.  It would be much easier if my cat didn't keep sticking his feet and head under the needle.
• Thursday I will be going back into PTSD with Dr. Mind.  I am anxious about this, mainly because I don't understand how it works.  He said about the same as it has been, then modified that to add with some variation for the need for me to say and feel things.  So we'll see.  I am glad to get going though because dreading it won't make it easier.
• I think that my mania is pretty much over.  It made a huge difference when I got some sleep over the last few days.  Yesterday I was exhausted at Dr. Mind's but came home and took a nap that seems to have helped with some of the exhaustion.
• I am officially having discomfort in my pelvis every day.  Often it doesn't exactly hurt, but then it does hurt every day to some extent.  I will be glad to move past this time in my life.
• I am worried that my doctor is going to think that I heard hysterectomy and jumped up and down in excitement and then began pushing to have it by getting Dr. Brain involved.  I realize this is unlikely and that they are both used to Dr. Brain being a part of things but it feels like cheating to try to get this done now instead of waiting the 6 months she wanted.  Then again, it is not good to be afraid of your period
• I finally have a window open after weeks of being too hot.  I tried last night but only made it an hour because it was too hot even after dark.
• My mom and I worked out a way to pay down my credit cards quickly and aggressively so that I have more money free every month.
• I tried to refinance my car.  I was denied because my income is too low.  Which is stupid because if I've been making payments of a higher amount on this income it would seem I could continue that.  I'm finding it really hard to have fought hard to improve my credit score (up 250 points almost in the last maybe 3 years) and then have that not matter because of my low income.
• It is weird to see your student loans marked as closed debt on your credit report.
• After years of having had difficulty making payments because I was too out of it it is weird to see my credit report now only shows 1 payment that was late something like 5 years ago.  Most of the old notations about payments that weren't made have finally hit the magic 7 year mark and faded away.
• It also is weird to suddenly have my entire outstanding credit be my house, car, and 2 credit cards.  This is vastly different than the past.  I paid off one student loan this year anyway, plus 2 credit cards (one very small amount, one not and yes I have had way too much credit card debt) and  my federal student loan was discharged so there just isn't much debt left.  (Except this is all big stuff).
• I HATE that my mom is helping with this.  I also know that I can hold onto my pride all I want, I can't make a dent in the payments alone.
• For having a niece I have almost no pink fabric.  This is weird.  Right now her bean bags are cats on orange, dogs on black, multi-color dots, purple and blue batik, turtles on pale blue, black with white dots, muschrooms on green and bananas on brown.The next will be bright blue.  I have one pink that I'm hesitant to use because it will get filthy easily and so I probably will try to pick up a .$.99 pink square when I buy more fabric for liners.  The remaining 2 big ones I'm not sure about.  I have giraffe and she'd like that but that's a lot of animals so it probably will go to the smaller size.  I have a ton of fabric, I just don't have much girlie fabric that is colored in a way that it will not get filthy immediately.
• This is getting boring so I'll stop.  I just don't have much to say.  Tired and anxious is about all I can say.

Copyright 2006 www.masterofirony.blogspot.com

Bipolar Women/Mirena IUD

11 months ago I had multiple gynecological procedures to try to determine the cause of very heavy bleeding every month leading to just about needing iron infusions and making me feel generally horrible and pelvic pain that felt like I was being jabbed in the right ovary by an ice pick.

There were various issues that were treated but one of the causes was that I do not ovulate.  I probably do every once in a while, but it's not routine.  Best guesses are early menopause (so early the hormones were normal 18 months ago) and the effects of years of meds that cause issues with ovulation.  fficNot ovulating means that a chemical imbalance develops and the uterine lining is not efficiently removed each month, leading to thickening that causes bleeding.  In addition I had a polyp in my uterus.  They thought I was probably have cysts on my ovary but in surgery nothing was visible although I did have cysts of fallopian tubes that were removed and might have been part of the pain.

But overall this was difficult as I couldn't just go on birth control pills which would have helped regulate cycles and stabilize hormones.  However we already knew because I tried it once for a year that birth control pills make me moodier than I already am.  The Mirena IUD is an excellent choice in this situation because it releases very low doses of progestin which keeps the uterine lining from building up.  Most women have very light or no periods on it and it stays in for 5 years.  It comes out very easily and you can try to get pregnant immediately.

We knew there might be some reaction when it was put it, but since we knew it could come out we tried.  Nobody, and this decision included not only gynecologists at one of the top 5 hospitals for gynecology and one of my 2 doctors is one of the top gynecologists in the world, had experienced a bipolar patient unable ot tolerate it.

When I started operating out of control soon after it went in we didn't blame the Mirena.  Other doctors were consulted and my psychiatrist and gynecologist kept in touch about how my mental illness had taken over everything.  Eventually we decided it may need to come out.  I saw the gyn. and she said she usually has a hunch what to do in a situation but in this case she didn't. She'd never seen anyone react but I have so much drug sensitivity and the fact that I had been suicidal for months made us decide to remove it.  Removal is nothing.  It feels weird because as it comes out you feel the top and bottom of your cervix but it doesn't hurt.  The only pain I had was that they had to use an adult speculum and usually it's all about the smallest possible.

It wasn't the cause of everything.  But it was making things worse, sort of taking what I was feeling and making it seem much worse to me and impairing my cognition so that it felt like suicide was a good decision, especially considering the frustration of not being able to remember anything or think through problems without help.  The last time I was actively suicidal was just about the time it came out.  I haven't gone so long with feeling suicidal in a year.

Even then it seemed like it was me.  Until my psychiatrist had a new patient who had some of the same issues, beginning with the placement of a Mirena.  So, this is my public service announcement:  If you are bipolar, have a mirena and are less stable it DOES seem to effect some people badly.


Copyright 2006 www.masterofirony.blogspot.com

Heat 1, Me 0

When it is over 80 it is hot enough for me to feel bad.  When it is over 90 I am unable to leave air conditioning for more than a few minutes.  When it is 100 I have to stay inside and quiet or I physically get sick.  I've barely left the house since this heat started 2 weeks ago (I think).  Yesterday was 105 and I walked in and out of 3 places plus to and from the car at home.  I do not feel good.  I'm so tired, I'm lethargic, I've slept tons, even my muscles hurt a bit.

It's supposed to cool down a bit this week.  I hope it's enough to give me some time out of the house.  It's really hard to be stuck inside so long, but days like today remind me why I have to be so careful.  I can't even describe the weird feeling this "sick" (for lack of a better word) is but it is icky.  I suppose it is heat exhaustion, lithium style, but I think it can be done any time now.

I am a prisoner in my home.


Copyright 2006 www.masterofirony.blogspot.com

Dr. Brain appointment

Not updating much because my mind is going 30,000 miles per hour.  Mania is so much fun.  (And now my manic brain is singing a song from camp that was on a tape that went with "lummi sticks, which I knew from grade school as rhythm sticks that you tap together to a beat.  And that song said "Lummi sticks are so much funnnnn, come on now everyoneeeeeeeeeee, tap with MEeeeeeeeeeeeee, tap with Meeeeeeeeeeeee").  Do you know how much I hate that song?  A lot.

But I saw Dr. Brain today after not sleeping much at all.  We talked about the improvements since the Mirena came out and the heavy periods/pain that are bound to mess with my life and my desire to have surgery and move on. She sent an email to Dr. Sweetheart and also told me to make an earlier appointment with Dr. Sweetheart.  She is fully supportive of doing this in the next month or two as things are worked out among doctors, if Dr. Sweetheart is ok since it is her decision obviously.  But the potential psychiatric issues with my not feeling well for months are a factor in treating me as a whole person so I am really hopeful that good things will happen.  I requested the appointment online and had trouble making it not sure emergent.  I just want to get in within the next few weeks.

So we'll see but I have more hope now that I'm going to get through this before I feel like it has further damaged my life.

And now I'm going to start at a wall until time to sleep.

Copyright 2006 www.masterofirony.blogspot.com

Mania questions

Michal asks:

Are you aware that you're being driven by mania as it happens? It seems you're memorizing every move as it unfolds. I NEED to do exactly what you're doing...but you're doing it without pause, rest? food? drink? meds? Can you apply the brakes or do you "want" the rush as it happens?



Which are great questions.  I am not usually aware for a while.  It is usually when I glance at a clock and realize that it is 2:15 AM and that somewhere hours ago I became obsessed with making bean bags for my niece.  (That's tonight).  At the same time my mind is trained to kind of follow what I am doing and evaluate "is this reasonable"?  That usually gets it well into the episode the first time it happens and then when I'm aware I am manic and need to be cautious I catch things a little faster.  Sometimes it takes something like realizing I'm starving or haven't peed in 6 hours or that it is suddenly dark out to make me pay attention.

I am careful to track what I'm doing to the best of my ability.  This is because I get to doing so many things that eventually I'm going to lose something or have another problem.  So when I know that I'm running around manically I try to think about where I am and what I am doing a little.  This time I cheated and made some notes so I could write that although mostly I did it from memory and I think I forgot at least one weird activity.

It's not an effective way to get things done.  I mean, I was so distracted it took hours to make my bed.  And there's no telling what I will discover I moved around in a few days.  It also is not good for you.  Dr. Mind sent me home today with orders to go home and go to bed.  I did and napped for an hour eventually.  Not enough to break the mania but enough to feel somewhat better.  The only reason I think he did that was that I was initially saying "manic" and looking fine.  After he heard me talk for a while he could hear it, but because my headache was so bad last night and I had several muscle relaxers I looked a lot calmer than I was.

Mania for me does not feel good.  Very, very rarely it does and then I want to keep it, but usually I have what is called dysphoric mania, where it makes me hyper and tired and grumpy.  That is probably because I usually rapidly transition to a mixed (mania and depression together) pretty quickly and mixed is just bad.  Mixed I can't use words to describe.  Mental health professionals considered mixed episodes to be one of the hardest things people go through.

The other thing that I have to watch is we all have lists of things we need to do, sort, etc.  If I start tasks that I don't HAVE to do and become obsessed with them (ie cleaning out my entertainment center drawers) and insisting I must find this brown velvet bag that could be anywhere in the house, and I feel compelled to do this without stopping then that's a good sign of mania.  When I'm allowed sharp things I have a tendency to take on home projects that I will put off for months before mania makes me trying them.  Often they aren't wise choices, which is why I would be hard put to even try such a thing just now.

And the truth is that I get so many things partially started I usually make a worse mess.  I have VCR tapes stacked on my living room floor now because they need to go to goodwill but should go with the rest of the tapes which are in the basement.

And now I am going to start trying to relax and sleep.  I have another headache, probably from being overly tired and I'm hoping if I read for a while it will just disappear as I fall asleep.  We'll see; I've not been getting sleepy anywhere near 2:30 AM in a while.

This mania, by the way, is always a bit easier for me to follow because it was predictable.  I'm dreading the next step with Dr. Mind.  I identified the need and know it's important, but it will not be fun.  Mania delays things, so hopefully Monday I'll settle down a bit.  I also am feeling a lot of stress as I'm having ongoing pelvic pain, some of which is new, and am finding myself absolutely dreading the next blood bath.  I want to find out if I can get the surgery sooner because waiting doesn't help nor does going through these periods, but I have timing issues because of vacation in November and I agreed to 6 cycles.  But that doesn't mean it can't be sooner.  I think.  I'm just not sure where to go with this.

Now that I'm sewing again some I also have to watch carefully for excesses there.

I love bipolar.
Copyright 2006 www.masterofirony.blogspot.com

Mania at night

Every so often I try to post about what mania feels like.  Today has been quite the day.  I went to the basement for something and this turned into digging through a ton of boxes which are down there waiting for painting upstairs.  Mostly it is sewing stuff but some is mementos of high school and college.  I went through it all and became rather obsessed about finding this small velvet bag that contained something my father gave me for college graduation that can be sold and makes more sense to sell.  But I couldn't find it.  I looked upstairs for a while but gave up.  I needed to empty my dresser because it's going to a hauling place and so I did that.  I had to move the mirror from the dresser to another room and knocked over things in the closet.  So I got that fixed and then got the rest of the pictures I needed.  Then I saw boxes that are being stored in the basement right now.  They have either old stuff from high school and college, one box has some childhood toys and the rest is sewing stuff.  So I rummaged through all of these trying to find that stupid bag. Once again I gave up yet again and decided I needed to change my sheets.  I discovered that the waterproof cover was torn and I had another so I changed that (a big, big job with memory foam mattresses because the memory foam is heavy.  So in the middle of that I got tired of walking over suitcases that my cat damaged in anger when I got out of the hospital and so I got them emptied out and put aside for goodwill.  Then back to the mattress cover, then the sheets etc. I had to fill pill boxes and struggled with not problems solving why I might be having trouble finding the bottle of some med. During sheet application I went back into the closet and sorted a few more things and then cleaned up the mess I'd made with the mirror.  I took a computer bag I used to use at work to the pile for goodwill.  And then I got obsessed with that brown bag again.  I went through every basement box, which I had originally gone down to so I'd get fabric for my niece's birthday gift.  But I extended that into both the storage thing and trying to find a way to empty one bin to use for something else. Then I moved laundry to the dryer, threw the fabrics in the washer and came upstairs and searched through my "important papers", boxes of things I just never did anything with, these baskets that are under my coffee table, the drawers and cabinets on my entertainment center.  Nothing.  I did find more stuff for goodwill and some trash though.  Then I went through the remaining storage containers I have upstairs looking for that bag even though I know perfectly well that it is not there b/c I searched there 2 days ago.  I searched my desk for a 3rd time.  And I gave up, except that I thought to check behind my so-called scrapbooking supplies (long story), and my attention was drawn to a box of computer stuff, interesting only because it was from the right time.  And I found it. Then I had to google it to find an estimated value.  By 4 AM I was at least in bed and trying to make my hands busy with knitting but I'm way too jittery for sleep although I am getting there.

And all of this is since 10 pm.

Copyright 2006 www.masterofirony.blogspot.com

I am tired. And a bit scared.

I am exhausted.  The biggest reason is absolutely stupid.  I filled my pill box with the supply I needed for the time Dr. Mind was gone.  I noticed I was about out of one dose of the 2 Seroquel doses I take (3 50 mg, 2 300 mg) but I knew these should be here.  The problem was that Dr. Brain forgot to bring them to me once and so they were mailed.  I asked they be mailed instead of UPS because I'd rather not have $5000 (around that, no idea what the price is now out of pocket) sitting on my porch in the heat or being stolen.  When I went to get the package it was postage due.  I was due for my social security check but didn't have it yet.  I thought I had enough of the 50s to get through (I did, I just missed some when I filled the pill box) and I did not have the cost of postage.  I was too embarrassed to ask them to keep it for a several day period until my check came and even with my check that was pretty expensive for my budget.  So I sent back.  Turns out they won't pay for it to go to a PO box and I finally got the meds today.  In the meantime I'd been short on the Seroquel dose the last 2-3 days and hadn't remembered.  (Story of my life, not remembering).  I also had my usual delayed hit of adrenaline from the storm and that didn't help Saturday night.  Last night was a few hours of sleep.  I napped a little this evening but Anna woke me when she was hungry.  I hope I'll fall asleep again fast but that doesn't usually happen.

The next reason is it soooooooooooo hot and I went out to see Dr. Mind, did a few errands (replacing necessary food from losing the contents during the power outage and getting some meds from Dr. Body's office).  But this is trash day and I had all that spoiled food so I had to clean the fridge and freezer out and carry out a ton of trash.  I thought first that I'd be ok to also pick up some sticks but then the heat hit me and inside-salty food-lots of water-cool bath made me decide my yard can be full of sticks and branches until fall for all I care.  I always forget how much my meds make me hate the heat.

The little bit scared.......I see Dr. Brain Saturday so hopefully she will have some good advice.  That heavy period I mentioned was not good.  We're still saying our prolonged good-bye's and the pain is still more than I'd like at this point (none would be great, just a bit occasionally would be much better.  Instead it's much to all of the time with varying severity.)  I do not want to go through watching that pain take over my life.  I also do not want to keep spending my periods knowing that I'm bleeding way too much and that I am to keep waiting it out until December and then it will take time to schedule surgery, for them to figure out the anesthesia parts, and so I"m sure it will be January at the earliest.  I want to give up on waiting and seeing.  I understand the rational and the truth is that early December is the soonest I probably would do it unless I was dying because I have vacation scheduled for Thanksgiving at the beach, a retirement gift to our mom that my she is paying half of because of my situation changing.  But we didn't know when we booked it that I wouldn't be working.  In fact I did all the research on where we'd like to stay while recovering from surgery last year.  So that's a big thing and while I don't want to be in pain for it I also don't want to be recovering from fairly major surgery. I still hope that there's a chance of moving it way up but I have a feeling that's a dream.  I know my doctor needs to be conservative and be certain this is the only option because I only 36.

The thing is that I am really scared of surgery now.  Last year I went into surgery one person and came out another.  Surgery seems to have played a role in my rapid psychiatric decline and when I think of this surgery that can be a bit long (I don't know how long I was under last time because they let me sleep through a lot of the prep stuff but I think I was just sleepy until they were actually ready to start cutting; I remember thinking it had been about 2 hours when I woke up and saw a clock but that wasn't all surgery and I have no idea how long was just sleeping in the post-op area.  I think surgery was maybe an hour and this sounds like it will be considerably longer unless they open up my belly completely.  And if anyone feels that that the faster the better I'm fine with doing that.  The gyn. talked about trying to see if she can find a way to do it vaginally with a spinal but I don't think I can have a spinal with MAOI.  I will at least get that answer from Dr. Brain.

A lot of me knows that surgery really just made a process that had been happening a long time go faster and that I have recovered.  Not like I wish, but I've always known that I was likely to eventually face some decline with my bipolar.  I've known for years I was running out of drugs for back-up and that a time would come that I'd have to wait for science to catch up to me.  Dr. Brain told me that in different ways for a long time.  Nobody thought surgery would trigger it, but I went into surgery with a great deal of decline in the 9 months since I had whooping cough.  I worked really hard to cover that decline but we kept adding Seroquel and not coming down.  Last June/July I think I'd really gotten worse than I was willing to admit.  The noticeable thing immediately post-op was the changes in my memory and thinking.  And my brain is wailing that it has no more to give to that cause.

It's mind versus body, a catch 22.  And it's scarier than I can explain.  Psychiatrically I want to do this as soon as we can so that it's over with, the damage happens or it doesn't, and I don't have to live with pain and dread of the next period.  If the pain keeps getting worse I'm going to wind up in the ugly situation of needing pain meds.  This is problem with only being able to take tylenol, I progress to narcotics way too fast and we don't need me on vicodin for an extended time either.  I remember the waiting period last year (that I chose) as being unable to do anything because of pain and anemia for months.  My life is already restricted and I don't want to restrict it more.

Yet I don't want surgery and psych stays to balance meds when there really isn't a way to do that anyway.  And I am very afraid of a repeat.  I know there are somethings we learned.  I need both a sedative at night because I do not seem to sleep in hospitals at all, I need my meds to be given like I take them, I need an option if pain gets worse and it's not time for vicodin yet.  And all meds must be chosen even more carefully than before, which may be impossible.

I guess Dr. Brain and I have a lot to discuss (she'll be in contact with Dr. Sweetheart) and I am hoping that she recommends just doing this.

I think this post is whiny.  Sorry, not intended that way.  I am just so afraid of even greater losses.
 


Copyright 2006 www.masterofirony.blogspot.com

Wow

I truly don't know how people who are on less SSDI than I am survive.  They are not usually paying medical bills and I paid a lot of that this time (using savings for part, savings I won't have much longer).  This time I had everything changed so that all payments could be made at the front of the month.  I still about had a heart attack a few minutes ago after I paid some bills in my 2nd bank account and then saw the amount left in the main account.  I earned some dogsitting money and have change to turn in and that will get me 2.5 weeks more as long as I am cautious with buying food since my fridge/freezer has to be pretty much totally wasted. I've been waiting for my trash night to deal with dumping it so it wouldn't stink.

Nonetheless, this is HARD.  I've been paid every 2 weeks or for about 18 months every week for as long as I worked, and disability checks were weekly (short-term).  Now I make much less and it only comes monthly.  I'll be fine as I learn to budget for this but it's tricky to adjust to.

And I certainly shouldn't do this at night.  I thought I had more to fiddle with than I do.  I never appreciated the sheer beauty of a real salary.  I think Dr. Mind would kick me for saying this but I wish we'd reached the point I could work a little.  Realistically I can't work until I have Medicare in 18 months because if I did I wouldn't have prescription assistance and I can't afford my meds.

But nonetheless it is hard to know that I can't go buy a simple pack of underwear until I am paid again. I'm hoping to refinance my car to reduce it's payments about $100/month and eventually the house will be refinanced.  And hopefully the medical bills I just paid are about the last ones.  I don't know yet if Dr. Body's office is going to approve assistance and if they don't I may have to occasionally see him just because there may be something that I can't figure out likely causes, describe on email and be treated that way yet that urgent care would have trouble handling because of the complex meds/allergies/history.

Oh well.  I keep trying to tell myself I'll adjust and this will be easier.  We'll see.

Copyright 2006 www.masterofirony.blogspot.com

Overload?

I think the adrenaline from yesterday is really hitting as I'm almost panic attacky and have no good reason for that.  I hate being awake at 4 am and especially I hate it when I have to the the A/C on because it's not cooling down sufficiently to make opening windows over night cost effective.

Either that or Dr. Mind has re-entered the state of Ohio, has drive past my exit as he must and I am feeling the anticipation.  (Be funny if he did drive through late tonight.......I'll have to ask).

Copyright 2006 www.masterofirony.blogspot.com