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

Friday, December 19, 2014

No more mail

I had a better day today. We took my nieces out for a day of fun so my sister could wrap presents and do things like that without a 4 year old "helping".  The day was a lot of fun and mostly was just what I needed. The girls are so much fun and the baby is a riot.  She is trying to say everything with varying success and she is so expressive that it is hard to not laugh with her.  Anne is a ball of energy and imagination and is so excited about Christmas, really for the first time.

  It has had its sadder moments as my uncle just seems to be moving through the end of this life rapidly.  I don't think he'll be here more than a few weeks based on the doses of incredilby strong pain meds he is being given and they are still adding bolster doses.  I'm so sad for my aunt and cousins.  This loss will be hard for all of them, they are a close family, and it is happening rather quickly.  He hasn't been doing well for a long time but has only been on hospice a few weeks.  I think he has given himself permission to let go as the pain is controlled and as he has been able to have a lot of conversations about his wishes with the help of hospice and just the open admission that things are deteriorating rapidly.  Updates on that tend to make me tearful just because they were the perfect family and then his accident brought so much hardship into all of their lives and they've stayed so close and now is going to be very painful for everyone.

Then I got home and hit a moment that I just hate.  I need to deal with it ASAP to make this part of the hurt end quickly but it's hard.  OTs have a national certification (the letter R for registered) as well as state licensure (/L, so it all together is OTR/L).  Back in the old days when I took the test getting the R was a HUGE deal because the test was only given twice a year (?) and was a 4 hour fill in the bubbles test.  It was also hard and you had to wait 6 weeks to find out if you passed.  They considered passing to be anyone in the top something percentile so it wasn't possible to even guess about how you'd done and those 6 weeks were TORTURE.  I remember getting very close to 6 weeks and leaving to go to the laundromat and thinking "it will be here when I get back".  When I got back there was a big envelope so I knew I'd passed and then there was much celebrating for the next several days.  After the R then I had to wait out Ohio's slow process to get the L and until I had that L I had to have someone co-sign for me.  About a month later I was finally independent, 5 months after graduation and 4 months into my job.  

This year I have to give those letters back, so to speak.  To keep them you have to do continuing educations and I think maintain a certain number of hours practicing (I think that is my state license).  Since I can't really do continuing eds because I can't focus well enough and it would be a waste of money anyway, plus I can't meet the hour requirement I will not be renewing those letters.  This year happens to be a year that both of them are to be renewed and so I have to deal with both hurts.  The first one can be done after the first of the year and is my R.  I think I really keep it, for whatever good that does, but I will now be status "retired in good standing" with the national board.  In the spring I will put my Ohio license in escrow where it will wait out the 5 years until it will also retire.  This isn't final except that I know that this is not work I can do without going overboard and therefore it is not work I can do.  I don't know that I'd try or be encouraged to try even if I new med came out that worked better than anything else had, because I am unable to not push myself past reasonable bounds.  And when that is added to my being slow at documentation it ends up meaning that I work way more than I reasonably can or should.  I don't know; it's just best right not to not talk about the "if" that does exist to go back.  Instead I'm just sad that it is time to essentially end this part of my life.  I worked so hard for those letters and I treasured them.  3 years ago I was sitting in a hospital room trying to decide if I was going to tell someone that I needed help because I was going to kill myself rather than deal with knowing I was done working, or if I'd just go home from the hospital without people understanding and feel that I gave them a chance to stop me.  This doesn't hurt like that did but it hurts a lot.  I really didn't expect anything to come about it for a few more weeks so the timing is hard as well.

Oh well.  I keep thinking that my family may have a difficult Christmas (although I honestly think it won't be, I think the worst part was watching my mom trying to put together something "normal" when that isn't there) but compared to my aunt and cousins we will be doing great.  

Life is just not an easy thing.

Thursday, December 18, 2014

sleep is good

Last night I just wasn't sleeping.  It was getting later and later and I wasn't getting sleepy at all.  When I knew I was going to see 4 AM I made a decision.  I decided my ankle was strong enough for me to sleep.

That probably doesn't make sense.  But it does.  See, back in the spring when everything blew up I started taking a tiny dose of valium PRN.  After a few days it became a nighttime thing, the only way I could sleep without terrible nightmares and since the nightmares keep me very much awake, the only way I could sleep at all.  And it worked.  For so many years we've tried to find the magic medicine that let me sleep and it turns out that valium is it.  Controversial, yes.  Not to be prescribed like this until everything else on earth is exhausted, yes.  Nearly certain to be taken away cruelly if I'm hospitalized again, probably unless Dr Brain thinks to make it clear that she doesn't want it to go (the hospital dr hates benzos although less so for me than for a lot of other people, probably because I have a different diagnosis than most people on that unit who are usually depressed and also because I've been on them for nearly 13 years now and my body is pretty used to them.  I get sick if I miss them so there is definitely dependence and I'm fine with that.  I'm less fine with the valium but if it nets me sleep when I can't sleep then I'm much more ok with it.

Since my surgery I've refused to take the valium because I've been too afraid that I'd wake up and be too groggy and manage to hurt myself.  For the past couple of months I've said that I would try it soon but then it always was too scary.  

Last night I gave in.  And when I got some sound sleep, without nightmares or waking up every hour or two for 15 minutes I woke up feeling a little better.  Still depressed, still tied and still far from feeling good but at least I felt rested for the first time in months.  Tonight I'm going to take it earlier.  I know how this goes, I will use it and over the next couple months my dose will increase but for some reason it never goes past a point that Dr. Brain feels is oK.  

It's not the ideal but it's what you do when nothing else works.  And I am so glad that I trust my ankle enough to do this.  Realistically I should have been fine a few months ago given that I don't generally get up when I've had valium but I was afraid of the the time I might, like if my cat needed something in the night (she often does) or if I was sleepwalking (one of my many talents).  But if I'm ready to be discharged from PT I think at my next session then I am ready to trust that my ankle can handle walking without my constant care.

I think today helped also because I didn't continue my fight with Dr. Mind in my head.  It's not a real fight, we're only fighting in my mind and we'll work it out Monday I imagine but I've been really upset and focused on that and today I was thinking of other things.

One thing this depression has yet to do is take away all happiness.  Right now my almost 19.5 year old cat is on my lap purring and I'm enjoying her heft.  After Thanksgiving she ate all the turkey leftovers I had (which was a lot because my mom doesn't like turkey much and I eat it as lunch meat since I can't have lunch meat without getting migraines).  So I bought a 12 lb turkey on sale and cooked it and she ate most of that.  And now her scrawny little body has the heft of 6.5 lbs.  I can feel body fat on her and not just bones like when she was down to 5.5 lbs just a couple months ago.  This girl has decided to go for 20 years old.   I can't believe she's still fighting but she obviously doesn't intend to give up on this life thing without a fight, no matter how old she gets.  I'm proud of both of us for getting her to this point.

Down, down, down

I've had a pretty spectacular run on mood stability.  Nearly 9 months with only one brief mania.  (And the effects of my asthma meds but those don't count).  The last month though all I've wanted to do is sleep.  This has partly been because of many migraines but it goes well beyond that.  For so long I kept thinking it was the virus I had and that the migraines were related.  Today I finally had another definitive symptom and so I know now that I am depressed.  (I completely forgot to eat for at least 15 hours.  I think I ate some fruit at 6 AM and didn't eat or drink anything until I finally remembered at 9 pm.  Classic symptom for me).

I am sure some of it is chemical; this is about the time that I usually can start using my SAD light although this year I'm not there yet.  (Some years I never get to use it).  Some of it was kind of a last-straw thing with a disagreement with Dr. Mind that I truly think is him not understanding what I've been trying to say for the last several weeks, an idea he disagrees with strongly.  I've been through it over and over and I cannot see his side as right even when I try to assume it is accurate and I'm not, so I really don't know.  If I didn't have PT I would have gone back to see him again this week but I do have PT and am going to see my nieces Friday and so I just didn't have time to see him and still have a day to lounge around doing nothing more than washing some dishes, loading the dishwasher and making a couple of Christmas ornaments (really simple ones).  

I'm just sad.  This is Christmas with my family divided and I'm more ok with that than my mom is.  My mom is having a tough time with this Christmas, probably the last with my brother for a while and honestly it is heartbreaking to watch her do what she needs to do to make it feel right to her.  I understand, it's just hard to watch because it's another reminder that next year all we'll be allowed to give him are very specific underwear, socks or money into his "account".  I don't expect Christmas to be bad, something Dr. Mind doesn't understand, I just see a lot of sadness in the preparations and in the discussions we're having.  I think he would prefer I not talk to her because I disagree and I think he does't think that conflict is good but the truth is we both have to talk to someone and there aren't a lot of people out there who you can talk to about this easily.  We need each other right now.  Agree or disagree, we just need that.  I know I'm the only person she can talk to about many parts of it.  And that is good and bad; the bad comes when I struggle with what she has said and then feel angry but can't do much about it because she is not in a place I'm about to snap at her.  So I think Dr Mind is seeing the anger and misinterpreting it.  I really don't know.  

It is hopeful that the indictment will not come before Christmas.  My mom has been sure that couldn't possibly happen and I've been terrified it would.  But I assume that the courts are closed on the 24th, so only 4 more days and that's safe.  I don't know if she could handle it if he were indicted before Christmas is over.  

I'm sad for other reasons too, all sorts of them.  I'm sad because I'm about to enter the part of healing from ankle surgery where PT is done, I have lots to work on myself and I will keep improving but also will not be doing things completely normally until summer.  I slipped on ice today, fortunately banging my arm into the house and catching myself before landing on my butt but ice is going to be an enemy all winter.  I am not risking injury.  I can do most things now but still have a while before I can do anything I want.  I'm sad because my uncle is dying and I know my aunt and cousins are hurting every day right now.  I can't really explain my relationship with this uncle; he's not my blood uncle but he is the most stable male role model I had as a child and he took 5 children born within 3.5 years to all kinds of things just as if all were his own.  His house was a safe place and I love him for that.  

I could go on.  Honestly I have just reached the end of my patience with myself at this point.  Some of this is so complicated.  I don't know how to explain how I feel about so much.  I don't know what to do with the fear that comes with any episode at this point, where increasing my Emsam is a last ditch resort because it leaves no room to go up at all if I do and it also increases the food and med restrictions to a higher level whcih is not a problem since I follow that anyway for migraine control.  I think she might increase my Seroquel once more if I can tolerate the side effects.  I have one now that may prevent me from going up (urinary hesitation bordering on urinary revolt at times; a bit worse than on tricyclics so tolerable but not ideal.  She doesn't like it though).  There are no other drugs that I'm on that can increase and no other ones that we want to add.  The next anti-pscyhotic is selected if it comes to needing a boost Seroquel can't give but it's not the ideal situation.  Other things are bothersome and then there is just a little fear of being depressed at Christmas; this isn't like the year I was in the hospital for Christmas and nearly 2 weeks but it is too close to the same timing.  And that was an awful Christmas.  Playing Monopoly with a kid who made the game miserable enough that I lied to get out of playing more and ridiculous hospital food disguised with fancy words to make it sound like a holiday meal.  

I need to just relax, rest, and get through tonight.  Tomorrow I will have had time to adjust to this realization that things aren't stable.  I will watch to be sure I'm eating (I think I didn't eat yesterday either) and I'll rest as much as I need to.  And life will go on, no matter how I feel.

Tuesday, December 02, 2014

Stupid steroids

This disease I've had (we all think influenza which is unfair since I had H1N1 in January which is 2 influenzas in 11 months) is the first respiratory thing I've managed to kick without antibiotics since I developed asthma after pertussis hurt my lungs.  Yesterday I was able to stop the breathing treatments but I'll be using the steroid inhaler for another week or so.  This one (Dulera) is the best I've been on in terms of mood but the night dose keeps me wide awake most of the night.  I can sleep all day long (and do, this virus makes you really, really tired) but as soon as that 2nd dose hits my bloodstream I'm awake for hours.  Oh well, it will end.  But I am getting better as long as I don't do too much and get a ton of rest.  I'm not hungry yet and I want to sleep all the time (except when the steroid is misbehaving) but I'm not wheezing or coughing nearly as much as I was before.  The steroid is also making me tearful and I've cried at things I will not even admit to because I'm just a touch emotional.  Normal though when I have to use the steroids.

Tomorrow Anne is coming up and we're going to do our annual Christmas gift making extravaganza.  This year we're making ornaments out of white dough made from corn starch and baking powder (soda?  sodium bicarbonate, whichever that is.  I can never remember).  I got all kind of sparkly 4 year old enticing things to press into them and so I'll make the dough, she'll cut the ornaments with cookie cutters and decorate, we'll bake them to hardern them and she'll decorate gift bags, then we'll wrap them up and she'll have gifts nobody but me will see (I just take mine that day).  It should be fun as long as I have enough energy and feel up to the whole thing.  I think it will be fast but I'm so tired that it is hard to imagine doing ANYTHING).

I went to the pet store and bought what I hope is a month worth of food for the cats today.  The guy ran it up very wrong and charged me about $40 more than he should have.  That was quite a shock until I figured it out.  I knew what it should cost and when it was way off I was confused about whether I couldn't do math or what was wrong.  But it was fixed after standing in a line a while longer so that was good.  Used a lot of energy though.

I know there was another paragraph to go here.  I have no clue what it was.  Guess I'll remember sometime.

Friday, November 28, 2014


My family has been passing around this evil bronchitis/flu/nastiness for a month.  I had avoided it and thought all was clear but apparently the migraines were just a lead-up to this.  Today I am sick.  So sick.  I sound like I smoke about 6 packs per day.  Which means asthma treatment.  Which makes me agitated.  Which can't be helped.  I've emailed Dr. Brain to see if I can increase my extremely high dose Serqouel just a little more for a while until this is over to see if I can prevent a full-blown episode coming out of this.  It's rough.  No could meds allowed except prescription cough syrup that is liquid vicodin minus the tylenol and steroid inhalers twice a day and nebulizers every 4-6 hours.  Steroids and nebulizers agitate me and it only takes once to do it.  Right now I'm waiting for time for the next treatment to take meds and the cough syrup and go to sleep.  I have to eat something; I ate "Thanksgiving 2" but that's all I've had all day except some fruit a little bit ago.  This also means a mess for me as far as both therapies go.  Monday I will need to try to see Dr. Body.  Ideally I can see him and Dr. Mind but Dr. Mind probably doesn't want me near him so that will need to be changed if possible, making it less than ideal.  Tuesday is PT but if I can't breathe I can't do PT so that will probably have to be moved.  Not good since I cancelled this week's session.  I haven't felt good enough to be doing my exercises most of the last week so I really need to get with it before I go back.  I'll have to schedule that for later in the week and then they'll have to reduce things to whatever my asthma will allow.  Fun.I may wind up calling the PT and explaining the situation and letting him decide if he wants to do the re-eval or not.  If I can't do things and won't meet my goals bbecause of breathing it's probably better to wait.  But I don't want to run out a calendar if he has a deadline and have to get new orders from my ortho who wouldn't be impressed by that at all, even though I really can't help it.  I feel so bad right now that typing hurts because I'm so achy.

And because of that I'm going to get off here.  So not what I expected of today.....

One Thanksgiving down

The easy one is over.  Two little girls sure do make things more fun.  The baby has only seen me with my hair down a few times and since my hair is really curly I look very different with it down.  She was kind of shy with me for a while.  Finally I scooped it all back and said "Is this better?" .  She grinned and emphatically nodded yes.  She's becoming a daredevil.  They have this little toddler slide in the playroom and she likes to climb up it and then slide down as fast as possible.  When I helped her go up she said "I climb".  Yes baby, you climb EVERYTHING.  She is just the sweetest little thing and her big sister is such a loving, caring, sweet child who does things like offer to help me up if I'm down on the floor with her.  She also makes sure people have what they need and aren't bored or lonely.  She was thrilled because when I packed up the whipped cream I gave her a "job": licking the measuring spoon from the bowl and then the 2nd "job" was licking the scraper I used to get it out of the mixing bowl.  She was in sweet tooth heaven.  She is starting to read and her interests are incredible.  Right now she's fascinated with Greek mythology.  But she also still is a big fan of Rudolph and all that goes with him.  So that's good.  When we arrived she was bribing the dogs into watching an episode of Scooby Doo with her; they help her feel brave.

On the way back my mom and I had a conversation about my brother and were more open than we've been before.  I wound up crying a bit but it helps to know we are more on the same page than not.  She keeps reminding me that some of my sadness is also because I've been so limited in what I can do for almost 9 months now (nearly 6 months from surgery and I was injured 3 months before that).  But I think things were said that will help us get through these next months.  I don't agree with all of her views about what is appropriate punishment for this type of crime but I also know that her view changed when it was her son and I know what she truly thinks.

I'm getting another migraine.  I woke with one today and took vicodin, a good size dose of advil and my naproxen for my ankle (which I took without consideration of the migraine).  I just needed the pain to go away.  Now I guess I need to get away from the computer light, take a shower so I'm ready for the craft fair in the morning (it's just a little thing but it's only a couple miles from here) and take some narcotics to sleep.  I'm pretty sure the migraines are stress but I'm going to go to the dr next week anyway just because one other time I thought my migraines had clustered and when the dr checked my throat I had strep.  Apparently some children get only headaches and nausea with strep and that is all I"d had and I've had that combination again so I'll get checked.  It also helps my mom who even though she knows I have migraines and that the neuro signs she sees are because of them when they get like this and my eye is droopy for several days (normal for me with this and cleared by the neurologist as normal enough but it's weird to see) she gets anxious.  Which I guess I understand.

I so do not want to shower....if I wait for morning I'll not want to do it then either.  Too many choices.....

Thursday, November 27, 2014


This time I've been quiet for 2 reasons.  One is that not only have I been slowly healing from my scar tissue tear (it took 3 weeks) but 2 weeks ago I started having migraines for the first time in quite a while and they wound up clustering and I spent most of a week either asleep or wishing I was.  I've taken crazy combinations of meds to get any relief at all and today has been the first day without pain.  But I'm exhausted from them (when they cluster it takes me a while to recover) and so even today I didn't do much.  Hopefully I'm make it through 2 Thanksgivings in a row.  I missed Dr. Mind and PT this week, neither of which was probably a good idea but I was so out of it on Dr. Mind day and PT was supposed to be a re-evaluation and I did not feel good and didn't want to have that make me look like I wasn't progressing when it was really my brain re-setting itself (I usually have a few days of bad balance and some neuro stuff after the migraines cluster).

The other thing is just that this is hard.  We are having 2 Thanksgivings to accommodate family needs at this time and the 2nd is hard because we all know it is probably the last we'll have as even a partial family for some time because by next year my brother will probably be in prison.  I am trying to be as strong and supportive for my mom as I can be; I realized all at once that some of the absolute dread she's been feeling and the pain surrounding these holidays is fear on her part.  If my brother were to get a long sentence this could be the last holidays she ever has with him.  Realizing that changed everything and frankly broke my heart a little.  I wish it were all different.  I wish it were like it was 2 years ago when we went on vacation for Thanksgiving and the whole family had fun and were relaxed together.  Last year was just my brother, mom and I because it was my sister's year to go to her in-laws.  And that was ok too.  This is a lot harder to be ok with.  It is so sad and leaves questions about what do you possibly say to make it not seem awful?  It is his fault and this is because of his choices.  That's how I remember that it is not a random, unfair thing.  But that doesn't change the pain for my mom, the pain for me, and the loss that comes between this holiday season and next.

I wish I understood how you could make choices that risked everything, not just for you but for your family.  I don't.  I don't think I ever will.  But I have to not be resentful because that helps nobody.

It does mean that I don't know what to say here.  I want to be able to be open and just talk about what I'm talking about.  But I can't do that because of legal issues and the fear that I could hurt someone even more.  So I avoid it.

I never thought that this could happen, that someone in my family would make blogging the wrong thing to do.  But it did and I miss it.  But I also can't hurt others and certainly can't risk doing something legally wrong.

So instead I hope we get through the next 2 days.  Tomorrow will be easier because it is with my nieces and they make wonderful distractions.  But Friday, that will be rough I'm afraid.  And I'll probably pay for not seeing Dr. Mind to talk about it in advance on top of it being hard.  But my sleeping in his office didn't seem worthwhile.  I don't know.  I'll just be glad it is done.

Wednesday, November 12, 2014

Merry Christmas. Oh.

When I saw Dr. Mind yesterday we were talking about the upcoming holidays and how the changes in my family dynamics are making them stressful (we will have to celebrations that are completely separate so that people who don't want to mix don't have to).  We talked briefly about how hard holidays used to be for me (we used to work for 2 months on getting ready for them) and that this year isn't that bad but it's just hard because things will be different, my mom is struggling and I'm trying to be supportive and the reality is that we have no idea what will happen because of the legal issues that are pending.  Things could change from our expectations on Christmas Eve if that is when the grand jury comes back.

Dr. Mind asked me something that nobody had ever asked before and that I hadn't thought about on my own.  He asked if there was ever a good holiday when I was growing up.  And the answer is no.  I remember good parts.  I remember moments that were a lot of fun and that were special.  I remember some special gifts that were very meaningful to me or that were wonderful surprises.  I remember getting old enough to buy my own gifts for people and learning how much fun that is.  I even remember that one year I said something to my mom about how my father never got us gifts himself and he gave me a sweater that year, from him.  She probably picked it out and just had him put his name on the tag but it still meant a lot.  I remember being little and how much fun it was to listen to Santa go around the world on the weather radio.  I remember that my grandma was exhausted every year when we were little because she stayed up until the middle of the night wrapping presents.  She tied ribbons on in this neat way that I wish I knew how to do.  She also tended to hide things and forget about them so we would get Christmas gifts in August.  My grandma liked a bargain and once found underwear on a huge sale.  She was all excited to find Care Bear prints, a luxury we never got and so we all got Care Bear underwear that year.  Imagine my shock when I put my first pair on and discovered it only had one leg!  She'd found a 2nds bin, didn't know because of the crowd and didn't check the items she bought.  There was a very ugly plastic plant that my grandmother and father passed back and forth for several years, always decorated uniquely.  There was the year I was a ballerina for Halloween and after my father made a sarcastic remark about wanting the same outfit my grandmother made him his own ballet costume for Christmas.  It was so funny.

There are lots of little memories like that. There also are so many messed up memories.....the grandchildren playing hide and go seek at my grandparents' Christmas afternoon and I couldn't play because my mom didn't want me to be alone with my grandfather, a memory I didn't understand for years until I knew that she'd known he molested me.  There were the bizarre gifts my father started coming up with as things got more and more messed up at our house.  Once I got a coffee can filled with dirt and rocks.  No reason.  Another time I got wiper blades for a car that wasn't mine.  And the topper was the year I got a toilet base and my sister got the remainder.  That toilet was never even installed in the remaining years that I knew my father.  For all I know it is still sitting in an unfinished basement in the house owned by other people now.

Christmas after my parents' divorce was just unpleasant.  My father had all these demands about time and we ultimately started doing Christmas at my  mom's after the midnight church service to have time to enjoy it while meeting his time demands.  Later we had Christmas time that we more or less hid from him because nobody wanted to spend a lot of time with him.  It was just rough.

Believe it or not I toned down the crazy a lot.  I didn't even talk about the annual Thanksgiving forced march or the annual Christmas eve major fight.  Or so many other things.  Christmas as an adult has been better.  Having my nieces makes it much more fun and re-directs everything to that instead of sad old memories.  It's still hard in that in Anne's life Christmas has been different every year both as her needs have changed and as life has happened.  Three years ago we had to delay Christmas nearly a week because I was in the psych unit.  My mom had a hard time with that because she struggles more than anyone else with the lack of tradition.  I kind of liked it, to be honest, because it was very low pressure and nobody had to worry about getting to other family or anything.  The being in the hospital for Christmas part sucked though.  That was a terrible place to be in and I hope I never feel like that again.  

I don't know.  I'm working on coming up with happy memories.  That's good but it is disturbing that I cannot remember one single happy Christmas.  The best I can do is remember being little and my cousin and I who were only 4 months apart always had a lot of fun with the excitement and anticipation on Christmas eve.  We had Christmas afternoon together at my grandma's and I'm sure we enjoyed that too but I don't actually remember those afternoons or Christmas dinners.

I kind of wish he hadn't asked that.  It looked like something that just occurred to him and it's something to think about but it is so sad.  So very, very sad.

Sunday, November 09, 2014

About this blog

I seem to be writing here less and less.  This time I did have a good excuse (and also if I owe you an email this is why):  my internet has not been working very well for the last 2 weeks or so.  It feels like forever.  I think I finally reset the correct thing tonight.  We'll see.  It's been really frustrating.  On top of that I'm exhausted.  My body is pretty used to my pre-ankle schedule of Dr. Mind weekly and Dr. Brain monthly, on different days. Now I have PT twice a week for 30 minutes each time (and 30 minutes of driving total) and Dr. Mind each week.  One Monday per month I have both Dr. Mind and Dr. Brain and those are EXTREMELY long days.  They are absolutely exhausting, beyond what I can even explain.  Then there is my home PT work which used to be something I did for a couple of hours each day but now is a lot less than that because I can't do the balance stuff without a spotter.  I'm also dogsitting a lot more now that we have 2 dogs.  It's a lot and I'm very tired a lot of the time but I'm still not sleeping well.

I think 2 weeks ago I tried a med change; I increased my gabapentin (Neurontin) by 25%.  I was allowed to go up another 25% but I honestly felt worse with the increase so I gave it long enough to be sure and stopped it.  Dr. Brain will have to figure out something else since my mood is still kind of everywhere.

As far as the blog goes, I'm not stopping it.  There's just a big issue with the things I most would want to talk about I can't do that here.  The legal issues with my brother are all still pending and even when they aren't I'm not sure how much I want to put on here about that.  It's hard to explain but it kind of feels like this tragedy isn't mine.  I don't feel that it is his; somehow I feel it is my mom's, probably because she is the one who has been the bravest and I think the most deeply hurt with this.  And it's not something she'd want out there for anyone to read.  However, when it comes to what is on my mind and how I'm coping, those issues are huge.  I don't know when that stops.  I guess I'll just find out one day.  Right now there is a lot of confusion and contradiction in how I feel and until that is over it is even more difficult to say much.

The other thing that is on my plate the most is my ankle and I'm tired of talking about that.  It's been 21 weeks now and I still have months of therapy before I'm done.  I just went through a scary spell where I was standing on a wobbly surface (upside-down Bosu ball if you know what that is) and shifted my feet by scooting them.  In the process I twisted my ankle a bit and tore some scar tissue and irritated a lot more of it.  I was terrified that I'd injured the reconstructed ligaments but after a week of easier PT it is getting better.  The irritated scar tissue led to a lot of pain from a band of scar tissue on the bottom of my foot that I've been trying to stretch away without success since August.  I am finally allowed to do passive stretch and yesterday that partiailly released.  It's not done but it is much more comfortable now.  Passive stretching is hard.  I have so much scar tissue, which is desirable, but it needs to be molded into functional scar tissue that is supportive and the rest of it which needs to loosen up a bit.  There is one direction I still have almost no motion and that scar tissue is really tight.  I have a feeling I'll never have a lot of movement that direction but we'll see.  Therapy has been a little emtional this week as I realized that I am not progressing rapidly with balance and that this is probably the result of psych meds.  My injury was the result of psych meds but I hadn't thought about them affecting recovery.  So I now know that I'm a little behind but not too far, will need several more months to gain balance and proper gait and my PT tried to make me feel better about it yesterday by making the hardest balance activity (throwing a ball into a return net while standing on my bad leg) seem easier by putting me really close to the net to gain confidence.  I saw through it but it was nice of him to try.  It's just hard to think that after 3 months of therapy I have a genuine need for about 3 more.  And I'm not sure that counts my desire to do some therapy without a brace when I reach that point because I haven't been without a brace in 5 years.

What else?  Thanksgiving is coming and it will be hard.  There will be 2 of them because my brother isn't allowed near my nieces.  It will probably be the last one as a free man for him for a while so that's rough.  There is some chance my sister's family will be going away for the holiday and then we'll have one still weird meal here.

Fleas.  I feel so bad about this.  My long hair cat has been shedding a lot and throwing up hairballs to the point of aggravation.  This week he suddenly was missing a lot of hair and there were clumps of hair everywhere.  The shower actually had clumps of hair and some blood.  I took him to the vet and by the time we got there he had red patches in and in front of both ears and was clearly miserable and had lost weight.  I knew he had a flea allergy from when we moved into the house I owned and there were fleas; he wound up a mess.  But there didn't seem to be a way for him to have fleas here.  We went to the vet and I suddenly realized when she found fleas that the stray dog had them and I had been back and forth in the 24 hours it took his medication to work.  So apparently I carried fleas into my home.  By this point Noah had a skin infection as well as bald spots and fleas so he got a steroid shot, an antibiotic shot and both cats got flea treatment.  I got a lot of laundry and steam cleaning.  And a bad case of phantom-itchies.  I felt so bad for the cats last night; the fleas were dying and apparently biting as they did and both cats were miserably itchy.  I had to use a more gentle, slower working flea treatment because my old cat can't process meds so well.  Today they seem more comfortable although Noah is wide awake still which is the combination of steroids and itching.  Poor babies.

The old cat, in other news, is kicking butt and taking names.  She is off her nausea med that a  month ago I couldn't miss a dose of without dire consequences.  I finally stumbled into 2 foods that she tolerates and likes and she is eating real cat food again.  One of them is usually really expensive but is on sale through the end of December so I'm going to be buying immense quantities of it.  Truthfully the expense is pretty well negated at this point anyway if she just eats the food and there isn't waste.  This stuff is pretty much as close to just giving her actual, unprocessed food as you can get without doing that and her tummy likes it.  She's more comfortable, gained a bit of weight and I'm not throwing out any excess foods.  I'm thrilled by this and am now expecting to see her hit 19 1/2 in January. Not bad for a kitty who has had renal disease for 4 years.

Dr. Mind has finally gotten a helpful treatment and is back to being himself again.  I missed him and I'm glad he is better.  I never realize just how much he helps hold my life together until he isn't there doing that.  My depression is even a little better since I know that I have him back and able to focus again.

And that's everything I can think of to catch up on.  I think it's time to curl up in bed with a book and see if I can sleep.  Last night I slept so hard I didn't know the cat had thrown up in my bed until I woke up with a cold, wet sleeve.  I moved to the couch and didn't notice the remotes laying there.  When I turned on netflix today I learned that I had apparently turned on 1/2 of an episode of My Little Pony while I slept and never noticed it.

Hopefully I'll manage to blog a little sooner next time.

Sunday, November 02, 2014

It took 20 weeks....

to sprain my ankle.  Not badly, but enough that I'm spending the next several days icing and hoping my stomach, irritated by all the Seroquel I take, will tolerate the extra anti-inflammatories.  It's frustrating and a little scary and it hurts.  In a way hurts is the hardest because I've fought through a lot of pain to get here and I don't really care to go through more.

It happened so easily.  I do an exercise in PT that involves standing on a wobbly thing and doing squats.  It's hard and makes me nervous so when I did one squat and moved my feet without coaching Wednesday my PT commented on how well I had done with that.  After that exercise I adjusted my brace and said it felt like it was swelling a bit.  Which happens.  Later that day it started to hurt and kept getting worse until it kept me up part of the night.  I went to PT again Friday and we kept it very basic and still got it angry.  So I'm resting it and if it's still angry Wednesday the PT will call my orthopedist.  Hopefully it will be fine by then.

It's scary because it took so little to hurt it.  All I really did was slide my feet against friction.  I didn't roll it that I knew about, I had my brace on, and it didn't hurt any more than usual at the end of the session.  But the ankle hasn't had to do much work (hasn't been able to do much work) in the tiny movements to correct balance in 5 years so those are a big deal right now.  And apparently they are enough to injure me a bit.

It will all be fine.  At the worst they'll put me back in the boot for a little bit.  PT will go a little longer because I'm losing time with this but that's ok; I expected PT to last until about the end of January anyway because I was on track to be done around the time I finish with ortho (Dec. 31st) and I want another few weeks of working on balance and safety with no brace because it has been so long since my ankle was on its' own.  PT is not horribly expensive with Medicare and I get a 20% discount for making payments up front which is really nice and brings my sessions down to what they tell me will be about $8/session.  For a strong, healthy ankle I can come up with the money for those payments. 

Nonetheless this is sobering.  This surgery is supposed to be 6 months to be in pretty good shape, 12 months for full healing.  I can see that clearly at this point.  I'm clearly not going to be all better in 6 weeks and I seriously doubt I'll finish PT before about 8 months out.  I started at 11 weeks.  Needless to say everyone at the PT place knows my name by now.

I think it also didn't hit me until today that my psych meds make this harder.  Psych meds distort balance.  Benzos distort balance and I take a good size dose of those daily (and have been refusing to take the additional dose of valium that I need to sleep well because of fear of falling).   Balance is my hard thing.  In fact right now they seem to be scheduling me only with the male PT and I think that is because I've fallen once and needed to be caught a few times and the PTA is tiny (and thanks to the psych meds I am not).  I have been doing great in PT but balance stuff has not had the same progress.  I guess I should bring up the meds effect because the PT probably isn't experienced to know that the list of meds I take means bad balance.  In fact all this happened (in a way, it was going to happen eventually because I had so many sprains anyway, but the date it occurred) was because my balance was off from starting Emsam and then complicated by my blood pressure being lower on it and needing more benzos while my body adjusted to what is essentially a form of slow-release speed.  I got out of the car too quickly and didn't wait for my balance to be stable and stepped on something and over I went, not helped by my clogs.  I keep trying balance and I know that I'm struggling because we try the hard thing every week or so and then not again for several sessions.  I did fall doing it once and have lost my balance a lot of times doing it and have corrected or been corrected by just a slight touch, but it is not coming as fast as strength and ROM did; I flew through those things.

Oh well.  This will heal and someday will be just one more little part of this saga.