Ugh

I am so annoyed with someone that it is nearly positive that I'm exhausted.  (Dr. Mind, groceries, unloading MANY groceries, making a soup to freeze, puppy to lake to play but cut short by ill-mannered pet owner and dog who jumped on our puppy and held him under water so we took a walk and left, ball with puppy, putting away 20 tons of groceries, etc).  And I've been sleeping a lot lately and didn't today so that probably adds to it.

I have a cousin who tends toward self-importance.  One of those people it can be hard to be friends with on facebook because whatever you post he will try to top it. 

In trying to make a decision about the nerve block thing (90% sure no but still gathering data and can't make a final decision until in the OR) I posted on facebook that if any of my nurse friends have experience with peripheral nerve blocks through working in OR, recovery or ortho could they please contact me.  I really hoped for a professional.  Instead my cousin posted and so now people are less likely to see it and think "Oh Jen hasn't had a response, maybe I can help" and believe me, at this point I'm way past wondering what other people experienced.  I mean, I care, but my issue is very different than other people have going into this so most people aren't going to have experiences that provide any help to me at this point because most people don't get as easily thrown off course by meds as I do.

Otherwise I just need to sleep and worry about cleaning the kitchen and putting the rest of the groceries in the basement pantry tomorrow.  In fact it is after med time I guess.  Time got away from me.  Oops.  And I had so much more to do today....Good thing tomorrow has no plans.

What would you do?

This is a 2nd post in a few hours so be sure to scroll down.

Here's my dilemma:

My surgeon uses nerve blocks to decrease pain and allow more rapid discharge from the hospital after surgery.  Usually he uses one with a steroid and epinephrine which decrease inflammation and bleeding.  I am refusing those because of the strong chance it would cause agitation during a period that I am to be laying still for 2 weeks.  Anesthesia agreed with this.  They did tell me that this means I will have more pain, which I knew.  And they offered me another kind of nerve block that is just an anesthesia and so is much safer for me.

The problem is that I looked it up and it has a 1-5% chance of agitation being a side effect.  That's tiny, except that I'm very sensitive to agitation.  I've already had akathesia twice from meds that don't often cause it and because of having it twice I'm more at risk from now on.  I also am just more likely to be agitated from anything than most people.  But 1-5% is so small.  And it probably means the difference between overnight and several days in the hospital.  On the other hand I've heard people say nerve blocks can be very uncomfortable while wearing off and not that effective overall.

I am supposed to talk to the anesthesiologist on the day of surgery and decide.  But I need to have made my mind up fairly well on the agitation component beforehand.  I'm leaning toward not risking it and dealing with the pain.  Which terrifies me as I think it will be pretty substantial.  So I'm asking everyone I know, what would you do?

Sand castles

I am actually doing pretty well right now.  The awful pain from after my brother was arrested has changed to just an ache and sorrow, knowing that at some point the next step (being arrested and charged with whatever he is really charged with) will come and bring new waves of pain, but for right now it is the same as it was 2 months ago when this started and I can live with it.  Trying to make myself see him as a human instead of a monster has been really helpful.  What he is accused of remains monsterous but he is still a human.  I think it is likely that this will be what is hardest to cope with throughout the entire process.  Other things are stressful, like surgery (gulp), but I'm doing fine and actually have been sleeping many hours per day.  I don't think it is depression, I think it is my body recovering.  I'm even off of the valium.

At the beach last week my older niece built a sand castle.  Unfortunately high tide began to come in and threatened her masterpiece.  For a while it was held by a moat her father dug around it but eventually it began to crumble.  And so I watched that little girl run and grab handfuls of sand, one after another and throw them on her castle, working as hard as she could to patch it up and keep it together.  She actually was quite successful and the castle held up to the tide for quite a while. 

Watching her I realized that what she was doing was pretty much just showing us what we have to do in life.  It gets hard to hold it together and all we can do is throw on patches to keep it together the best we can.  That's certainly been the theme of the last 2 months.  I have lived through some very bad times in my life and I've been hurt badly by them.  The events of the last 2 months though have shaken me greatly because someone who I trusted, something that takes so much to earn, did one of the worst possible things that can be done in my experience/view of life.  And so instead of living most of that time has been spent simply throwing sand at the castle and hoping it would stick.

I think my castle mostly broke apart and washed away in the last 8 weeks. But just like my niece's sandcastle just enough remained that life is still recognizable despite being terribly battered.  It will never be the same.  It's going to be hit by another tide eventually.  But something survived and for a while I really did not think that was going to happen.

Here goes nothing

I have about 3 posts brewing and honestly I just haven't gotten turned back on from vacation.  I had internet but had a hard time with low speeds so I just didn't use it much.  I needed that kind of break from it.  The internet becomes too much sometimes.  It was wonderful but the last day we drove home which was something like 14 hours in a car, mostly at night which was great for the kids but I got only a few hours of sleep and then I got home and could not sleep so I was awake for most of 38 hours.  I then slept most of Sunday then had a migraine so I was knocked out by the meds for that and slept another 10 hours or so.  Then I drove to Cleveland and after being lost saw Dr. Brain then got lost again (and you have no idea how stupid this was; I was lost for an hour before it occurred to me that I was not going to the right block of the street I was on).  Then I ate supper and napped.  Tomorrow morning is pre-op and then I see Dr. Mind in the evening.  So I am just getting back into life very slowly because my routines aren't worked out yet.  Which is fine, but I just haven't felt like doing much, blogging included.  I took a break from nearly everyting online while away and it was good.

For now I am worrying about one part of tomorrow.  I am supposed to have a nerve block for pain control after my surgery.  From what I've read nerve blocks contain epinephrine and a steroid.  Epinephrine interacts with Emsam in a way that mostly can be controlled in an OR setting (blood pressure stuff) but it also can cause agitation.  Steroids ALWAYS agitate me.  Since recovery is rather dependent on my ability to sit very still for several weeks and have limited mobility for a long time I am not willing to take that risk.  So unless they can promise me a nerve block without either of those things I'm refusing it.  Frankly I've read some things that sound like it can sometimes be pretty unpleasant anyway (sometimes it is great, sometimes it is pretty uncomfortable as sensation returns).  I'm used to working with my doctors.  This isn't the same type of relationship (this is a random anesthesiology resident/anesthesiologist and due to some kind of confusion I'm not yet set up as an MAOI anesthesiology patient).  A week gives them enough time, but I'm just going to be a little bit of a surprise probably tomorrow and then I'm going to refuse a treatment recommendation from a surgeon I have no relationship with at all.  I suspect he will be frustrated and annoyed by this.  I don't care what he thinks; I know what these meds can do and I know what it feels like to be mobile post-op and unable to rest or sit still no matter what doses of extremely strong meds are given (I was at one point on 1200 or 1500 mg of Seroquel and 10 mg of Zyprexa plus generous helpings of Klonopin, atarax (like benadryl), and I believe benadryl and I think something else.  HUGE amounts of sedatives and nothing could stop me from pacing constantly.  This time I have to be reclined with my foot in the air for 2 weeks all the time and then gradually decrease that.  If I am agitated it will be absolute torture.  So I am not allowing that risk to be taken.  But it is very intimidating to do this.  I don't mind telling my usual drs. that I am uncomfortable with some treatment or another but strangers and this weird surgeon concern me.  But they'll just have to use pain meds to reduce my pain and I will avoid the psych unit while immobilized. 

What I will say about vacation is that there is one moment that I am carrying with me as one of the best moments of my life.  My baby niece is now 9 months old and is saying 10 or 12 words consistently.  One night I walked onto the screened porch where my sister was rocking her.  A little voice said "Aunt Jen".  We all looked for Anne, thinking she'd gotten out of bed.  Nope.  The baby's first phrase was me.  She's not repeated it, but she has said Jen a number of times more.  It was so special.

More later.  I learned a few life lessons on this trip and I'll share them when I get through this week (pre-op/Dr. Mind; dentist; Dr. Mind; trying to get the house ready for surgery) but mostly I'll just say that I had a great time and am much more relaxed.

Anyway, hope tomorrow goes well............

Redacted Two

I moved some posts that were too specific for my comfort level at this time to draft.  Either time will pass and I'll be ok with posting them or they will stay hidden away.  It is so hard to know what the proper reaction is to this mess and I need to keep things private that aren't my story to tell.

Maybe that will stop the stupid panic attacks....

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Panic attack

I didn't get enough sleep last night.  I guessed wrong about how much valium I needed and the puppy woke me up early and I wasn't in my own bed (I was at my mom's) and it added up to a bad time.

This evening I was thinking about some of what has happened in the last year and about how glad I will be when all of this is over.  It's not just my brother's arrest, it has been the scary diagnosis and surgery for my niece and even though she is thriving now there is always the potential that the tumor will come back and if it does it is likely to be malignant.  There has just been a lot of truly huge, potentially life changing stress in the last year.  Then there is this upcoming ankle surgery and now is not the best time for it but I can't walk without hurting myself so I have to do it.  And I'm worried about money and vacation (I can't afford it) and on and on and so I was in the shower and suddenly was so panicked I couldn't breathe.  I took half of a valium and it is not helping me settle, even though I had my bedtime klonopin not long ago too.

This is the really bad kind of panic attack where it is hard to not just go and run up and down the road or something, anything to move but I know that I need to be still and focus on breathing and slowing down.  But that is so hard physically because my body thinks it needs to get away from my own mind.

I hate these.  They don't happen very often but when they do they are awful.  Usually I do a lot of crying and this time that hasn't happened although it would probably help.

Maybe hot tea.  Maybe some more klonopin.  I'll wind up knocking myself out through tomorrow.  But I have to make this stop.......

Hate this part of this disease.....

Surgery

I'm scared.  It's still a month away and I am more scared than I was a day before my hysterectomy.  The simple reason is that I need information and I'm not getting it.  Also nothing is working out with scheduling.

I had asked to not have pre-op on June 4 as I have a dental appointment scheduled.  I was originally going to have the hole in my tooth fixed (laptop smacked me in the mouth as I caught it falling down the stairs) then but it hurts so much it is getting fixed Tuesday.  So I can re-arrange my cleaning again, I guess.  But anyway, they scheduled pre-op for the week before that so that it is when I'm on vacation.  I found this out on the online site and so I called and left a message asking to change that.  5 minutes later I called and asked them to change my first post-op appointments because I was supposed to be in the cast room at 8:30 AM, 5 days post-op.  Given the pain level at that point, the 2.5 hour drive to get there and my slowness is getting anywhere I was concerned we'd have to leave at 5:30 to ensure lots of time to let me out to get a wheelchair and then wait for my mom to park a long way off and then come back to get me.  So I called again and left a message asking if a later time was possible and if not we'd make it work.

But the thing is that I have no idea what the timeline is.  There isn't a lot on the internet about the 3 procedures I'm having but the standard generally is 2 weeks in a surgical splint, 4-6 (sometimes 8) weeks in a fiberglass cast, transition to cam walker and then about 6 weeks in that and then gradually re-learning to walk in a shoe.  The nurse (who changes her story often) told me the first day that I wouldn't be weight-bearing for about 6 weeks.  I assumed that would me the typical process.  But instead I'm going 5 days post-op to get a cast.  I don't know if they'll take the sutures out then; it seems pretty early.  Someone responded on a message board that she was casted on day 5 and then that was removed at 2.5 weeks and stitches were removed and she talked her doctor into a cam walker instead of the cast he usually used.  I'm the oppposite; I hated the boot when I wore it before I until I'm allowed to do ROM I want a cast.  Her surgery wasn't the same as mine and mine requires no movement to allow excess scarring to form so that it can later be broken down. I assume that this means I'll either stay casted from day 5 or be re-casted after sutures are removed at a later date.  I just don't know.

The nurse who is the contact person tends to tell me one thing and then change drastically a day later.  She also doesn't easily give out information.  The surgeon gave less information about what he was doing than my cat could give.  If I weren't a therapist I couldn't have followed what he said before having me sign consent.  So instead of going into this with a good understanding of exactly what is happening I know nothing. 

I have told the nurse in an email that I need information to help me feel in control and less anxious.  I sent her another email asking for the breakdown of the casting process.  I hope she answers it tomorrow and is clear and accurate instead of her usual answer that changes the next day.  I more or less know what the surgeon will do.  It's the afterward part that worries me.

The surgeon and his nurse also have the attitude that my MAOI is only anesthesia's problem.  It isn't.  They rely on nerve blocks.  Anesthesia has to decide if I can have one.  The ortho has to decide what pain med to send me home on.  There are a number I can't take and the rest the Emsam increases their effectiveness so they need to be sure I can tolerate it before they release me.  Anesthesia has to decide if they require admission; Dr. Brain doesn't know and I can't remember but think they do.  However I mostly remember the last surgery when I just wasn't going to be released until my pain was controlled because it was so bad the prior time when they refused to treat it since I couldn't take ibuproferon when the vicodin wore off.  Giving steroids would be bad since my body hates them.  There's all this stuff the ortho needs to know and which Dr Brain has now sent him.  Whether he pays attention is another story.

I truly am not that impressed by him.  I think he knows the ankle stuff and will do the surgery fine.  But as far as making his patients comfortable with what is happening he sucks.  And his nurse sucks.  I need to try hard to not answer the phone in my sleep if she calls in the morning.  I want her to answer in writing and I've expressed that; writing is easier for me than talking.

I just want to know what to expect.  I know already that this is fairly painful surgery.  Part of my dread of the day 5 visit is the 5 hours in the car unable to elevate the ankle well while sitting awkwardly.  I can handle the pain if I never have to feel things tearing in my ankle. The day 5 casting is going to hurt terribly. The cast puts your ankle in a pretty precise position and my ankle is not going to want to go to that position.  I'm not worried about pain though; as long as they figure out the pain meds before sending me home I'll be ok.  I just want to know what is happening, more than the total information the dr gave me which was "scope of ankle, modified Brostrom, peroneal tendon repair, about 4 inch incision plus scope holes, please sign here".  Glad I knew what he meant.....

I am really hoping his resident is the one who does the surgery.  I felt much more confident with him. 

I just want to have this done.  Or to be told what is happening.  That seems so minor and it has been so hard.....

Big decision

 I am going to see my brother.  It will probably be next week or in a few weeks after vacation.  I'm not sure where and how it will work out but I decided I needed to do it.  The reason seems so simple but it has been a very hard decision.

Last week Dr. Mind told me "he's still your brother".  I came home and did a lot of crying and a lot of writing about who my brother is and how this person is not my brother.  But it did make me realize that he is still a person, just one who made terrible mistakes and I need to see him as a person.  And then I realized that it is entirely possible that he'll be in prison by the time I can get around well.  I don't know if I can go to prison to visit or not and I don't want to leave myself wondering about what he is like and what I should think or feel about him (or even if he is really a person; in my mind he had become a monster, and as Dr. Mind told me, monsters are green with scary eyes).  I do not want to be left with regrets through his entire prison term or questions about how I should see him.  He did awful things if what is alleged is real.  But one of the things I've noticed myself struggling with is that like it or not he IS part of my past.  Soon after he was arrested I took down 2 pictures of him that my mom had hanging on the wall outside the room I was staying in at her house because it was too upsetting to leave them there.  But even then I had trouble.  I kept wanting to go through all of the thousands of photos I've taken on family occasions and isolate the ones of him to a "Steven" file.  But that didn't work because that did not change that he was there on those occasions and the "Steve" file would still exist. 

So my mom is to work out a time to see him, somewhere neutral.  The rules are that he is not to touch me and is not to call me by the nickname he has used as long as I can remember.  And Dr. Brain was very careful to insist that wherever we meet that I have an out if I need one.  If I walk into the room and can't do it that's the way it is.  If I manage a few minutes and that's it, that's the way it is.  The goal is not to traumatize myself but to do what I need to do.

It feels weird.  But it would feel a lot weirder if he is plea bargained while I'm not able to get around this summer and my last interaction with him in person would be yelling at each other. 

And I truly need to see that he is human.  It has been so much easier to see all child offenders as monsters because my grandfather was one.  And that makes it hard to believe that my brother isn't just like my grandfather.  My grandfather though was a sadist.  I don't know if my brother has that kind of trait but I don't have anything that says he does.  And that's important.

I never thought that this would be something I could grow accustomed to.  But I have and while whenever the next step comes new things will come up right now I know pretty much where things stand and that this is how it will be until the indictment.  The lawyer says 3-9 months for that usually and it has only bee one month and 5 days.  It seems impossible that it has been such a short time but it has.  So it is probably still a while off.

So, big step is coming sometime.  I'm really kind of busy right now which makes this harder but when I get back from vacation I'll have 2 weeks before surgery. 

I've got to get to bed.  My nieces are here visiting and I want to enjoy every second I can with them before I will be unable to play very easily.

Not yet

I thought I was starting to get used to the situation with my brother.  It will be a month tomorrow morning that the middle of the night phone call came.  Since not a lot has happened in that time while we wait for the grand jury to indict I really thought I was getting used to it, while knowing that it would get very hard again when he was indicted and then again when the trial comes.  I dread the trial.  I suspect that my own secrets will be brought forth (not by me, from the psychologist) and I hate that thought. 

Then the last few nights have been tough. And today I had a minor meltdown.  It is just so hard to feel so torn.  I feel like I am a barrier to my mom helping him in the way she wants to.  And that is not a good feeling.  Yet I also know that the support she gives him is probably not good either.  It is so confusing and I cried long and hard this afternoon.

I'm finding this surgery stressful to prepare for.  My surgeon was not very detailed in what is going to happen.  His nurse, who I am supposed to use for questions and the like is not very helpful.  Thus far she told me on the day we spoke to schedule and go through pre-op requirements that since I forgot to have him look at a nodule on my Achilles that I needed to make an appointment to do so because I'd need to sign another consent document to have that surgically repaired.  Fine, I did that and she called at 7:30 that morning wanting to know why I was on the schedule.  I told her it was because she'd said I needed to and she said she'd take care of it and call me that evening.  Two days later I called her and she hadn't talked to the surgeon but decided it wasn't necessary and I could bring it up in the OR.  She explained that this is scar tissue from tearing my Achilles (I can't believe I was weightbearing on this ankle a week after I hurt it 4.5 years ago given the damage).  Which is good to know, but I don't think I can sign a consent in the actual OR.  I am worrying excessively about this because I don't want another surgery and this lump can be the most painful part of the injury when nothing is acute.  So I used a new feature in the patient chart feature and sent a note to the Dr.  I seriously doubt it really goes to the dr, I think it will probably go to that same nurse, but I just said I was not trying to be argumentative but I didn't want to not be able to have something done if it could be and that I was happy to come up to see the surgeon to sign consent if needed but that I wanted to be sure this wasn't missed, leaving me to face more surgery in a year.  Not telling him was a mistake but I did tell the resident who forgot also so it wasn't just my error and when the dr only spends 5 minutes with you it's hard to remember everything.  He is nice but his bedside manner leaves a bit to be desired.  He has explained almost nothing about the procedure or post op and I won't see him or anyone from the office again until surgery unless they decide to have me sign a consent to shut me u.

  He is going to be about a cm away from the nodule anyway, so he might as well keep cutting and get it out if that is possible.

I think the nurse has classified me as annoying anyway.  She didn't know what at MAOI was and keeps forgetting about it and what it is and she doesn't really care  and thinks they don't need to know because it is an anesthesia problem while it is really a anyone-who-treats-me-problem.  It's frustrating.  But if they don't want people asking questions they should give more information and if they don't like non-traditional medical situations they should quit medicine.  Plus, call back when you say you will, consult with the dr when you say you will or I quit trusting you.  This will improve with Dr. Brain gets involved but right now I'm stressed that they will not pay attention and give me something I can't have or do something dumb like not removing the nodule and then going back in next year to get it ou

Anyway, I took a full dose of valium last night that really knocked me out and then I got really upset and took klonopin a while ago.  I'm feeling kind of sleepy so I think I'll head for bed early.  Maybe it will help me to relax a bit.''

I will end with this thought:  Crime hurts your life, your family and your friends far beyond what you think it will.  Don't do it.

Oh so anxious

Anxiety is beating me up today. There are any number of reasons. The ortho nurse was supposed to call me back yesterday about whether a scar tissue nodule in my heel can be removed. She told me last week I had to see the surgeon about this and I was going yesterday but she woke me at 7:30 wanting to know why I was coming. When I told her she said I did not need to come in and she would call me at the end of the day after she talked to the dr. She still has not called. So I wirry that I am having this huge surgery and may still have pain or need another procedure.

Then I spent time this morning working on my hospital bill, a monthly, useless occurrence that stresses me out terribly.

I saw Dr. Mind for an easier visit but what I am worrying most about right now with my brother is not something he knew the answer to. That is hard because I don't know who to ask.

My mom and I packed up most if the rest if what was at her house. I have a lot of organizing to do tomorrow.

And then our internet went out. This is from my phone. I have stuff to read but wanted to work on some stuff tonight.

So nit my easiest day. There is so much going on. And that won't change for a ling time. At least surgery has a date to dread and then it starts to improve. 6 weeks frim tomorrow.

Anyway time to work on settling in for the night.
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