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

Wednesday, December 31, 2014

The end of this year

I certainly didn't expect this year to be what it has been, the year of my brother's arrest and the year of the ankle.  But we don't get to choose and so that is what it was.  It had good moments; my nieces always are good moments and our beach trip was fun.  Today was great: I am officially done with ortho unless I have more problems (I have mild plantar fascitis so may be back with that but hopefully not) and I no longer have to wear a brace unless it is a risky activity.  I planned this visit for today so that I would end the first 6 months of healing on the last day of the year of the ankle (injured it March 15 and since I was sick all of January and has lithium toxicity and was adjusting to being off lithium for February and March there wasn't much good left in the earlier year) and it worked perfectly.

I still have a great deal of rehabbing to do but that seems to be getting faster; I can do things this week I couldn't last.  It will be slower this week and maybe next since my ankle is swelling in anger from walking without the brace but it will adjust.  And in 6 more months I'll be pretty fully healed.

201 days.  5 casts.  16 weeks on crutches at least 50% of the day.  6 weeks nonweightbearing.  5 months of PT (plus a pre-op month).  6 weeks on reclined bedrest.  1 home nerve block system.  6 weeks in a boot.  6 weeks of night splint.  3.5 months in a brace.  5 minutes to hear that all is well.

Monday, December 29, 2014

I like this

So Christmas is over and we all survived.  There were some hard parts; my brother was pretty emotional and that was hard.  He talked to me about his regrets about what he did for the first time and that made me cry once I got home.  That was really rough.  But we made it through and once again the first time it is different is over.  My mom was so ready for it to be over that she had everything down and put completely away by the 27th.  But she did make it through and that's all you really can expect right now I think.  She and I had a rough time because she got me presents but wasn't very lucky.  One thing she got a variation of what I wanted and the variation didn't work well for my needs; she'd forgotten conversations we'd had before about the thing and what I wanted.  She got clothes but in the wrong size.  And I asked for a specific camera that Amazon said was an upgrade from the camera I had that got sand or salt water in the lens on vacation and wasn't working very well; it wasn't the upgrade for that camera and didn't work for me at all (I have to have really good image stabilization because my meds make me shaky; this left me taking blurry pictures).  So a lot of my stuff wound up being exchanged.  I apologized a thousand times because I knew she was upset and that made me think a lot about what Dr. Mind told me not long ago, that one of the parts of the abuse I lived with that I still carry is that I will take blame for anything and feel guilty and apologize about things that I didn't do or can't control just to avoid having things get worse.  I certainly did it with this.  But it all worked out; the new camera has been ordered and we returned the clothes and wound up finding a sweater that I love and when we went into another store that was having a big sale I found jeans and since I had one pair of jeans that fit and 2 pairs that were too loose and fell off my hips if I wore them jeans were great.  She made me get 2 pairs so now I'm really good for clothes for a while.  These are about the nicest jeans I've ever had and they were marked down to affordable so that's good too.

The time with my nieces was delightful as usual.  Anne really understands the dynamics of gifts this year and was happy to give things as well as to get them.  It was sheer chaos with the girls but so much fun to watch them.  And they are just so sweet.  The baby opened a box of books I gave her and had her daddy reading within minutes; Anne was enthralled by a gross motor toy.  She was so tired; we were watching Annie while the baby napped and she almost fell asleep on my lap until she noticed her daddy carrying in an unwrapped present that she has been wanting for a very long time.  That woke her right up.  

But today was a kind of special moment.  I don't know if this comes across on here or not, but I'm really shy.  Shy to the point that sometimes I can't manage to do things that I should do because it is too hard.  But this year I forced myself to hand Dr. Mind a present.  Back in May when we went to the ocean I couldn't go in the water because my ankle was too unstable and I would lose my balance and risk injuring it even more.  I wound up spending many hours sitting in the sand sorting out tiny shells that I never wound have bothered with otherwise.  I also came home with many pieces of shells because I realized that these broken bits of shells, pretty much nothing on their own, were beautiful when put together.  I had vague plans to make Christmas ornaments using some of these.

So I did that and while the ornaments are wonderful it was actually kind of hard work.  But I still had all of those pieces and a vague idea from the beach that I wanted to make something for Dr. Mind.  I wound up getting a small jar, not much bigger than what I would call a vial and put in it sand and then pieces of many, many broken shells.  I wrote a note about how grateful I am that he helps me find beauty in what is often broken and last week on my way out I shoved it at him and kind of ran, telling him that he might have to shake it to get it to settle after it was in my coat and he'd see what I meant..  All week I have hoped he wouldn't say anything because I didn't really want to acknowledge it, whether he loved it or hated it, I just wanted to move on.

Today I went to see him and he didn't mention it.  He knows me well after almost 9 years.....But I saw what he thought about it rather easily.  There is a bookshelf that is more or less directly across the room from where I sit.  I spend a lot of time looking at it when I don't want to look at him.  In fact when he re-arranged the books on it I noticed immediately, just to show how much I stare at this thing.  On top of it he keeps various things like a photo of his son, a couple of things his son gave him many years ago, something his wife gave him that I suspect is a joke and now the little vial of shells.  It was something so small and simple but I think he understood what it really meant, which is something more along the lines of "thank you for being there through everything I've thrown at you for almost 9 years and for being who you are".  

I'm glad.  I always hope he knows that I know what he has done for me but I am never sure because I never have the words to say it.  

Wednesday, December 24, 2014

Big day

Today I finished PT!!!!  I really will be going back at some point when I am not in a brace to work on some higher level things that I haven't done in 5 years but for the moment I am done and since that stuff won't be urgent I'm going to take at least a month off unless the othopedist sees something that he wants me back in therapy for when I see him next week.
But i met all goals or exceeded them and I cannot tell you how happy I am to not be doing forward and sidestepping step-ups.  After 5 months of them I am totally bored with this exercise which I did nearly every visit, starting with just a couple of inches soon after I started PT and on and off a BOSU (half ball half plastic flat base) the last couple of months.

I've come a long way and had an incredibly good therapist working with me.  I don't think I could have asked for better.

I saw a woman in there today who was talking about ankle surgery but must have just had a scope done or something more minor because she was walking pretty normally.  She's having a lot of pain slowing her down and I kept thinking how blessed I've been with that.  I had bad pain after my scar tissue tore but aside from that I haven't had much pain during rehab.  Today I was sore from a weather change and from realizing that I can finally squat and push up with my bad leg, something I've overdone in happiness.  The last month things have gone so well; in November I was pretty sure and the PT was agreeing that I'd be doing this for another month but the last 4 weeks everything came together and I came really far really fast.

There is still so much to gain.  My endurance is still low, mostly from 6 months of low activity and the 6 weeks of bedrest.  I get tired really quickly.  I still have balance issues and proprioception issues and I have to do a lot of work on retraining my ankle to correct itself.  (ie when I stand on just that leg and it gets tired it will start to turn under and it doesn't automatically make the little movements to correct that which it should do automatically.  That will be something I work on for months).  But I'm walking with barely a limp now and I think when I get rid of this brace, hopefully next week, the limp will start to go away quickly.  I feel weather changes quite a bit but I don't think they can do anything about that.  I still need that leg to gain strength not as much in the ankle as in the calf muscle; it won't ever equal the other side probably because of my 5 year delay in surgery but it will get stronger than it is now.  

But it's all good.  This phase of my life is moving into the next phase, the 2nd 6 months of healing.  Yay!

Monday, December 22, 2014

Sometimes the little things matter so much

Today was better.  Dr. Mind clarified what he said last week, we left it at that although I later realized that I was doing precisely what he said I am doing but for a reason he can't know because I've never told him.  We also had a lighter session, no big focus on the depression or the potential sadness of the holiday.  It was what I needed and I'll be glad to get there next week and talk about what he doesn't know and how that factors in.

And then I just got what I needed, a kind note from Dr. Body.  Because synthroid is typically a morning medication I have tried to take it that way.  (It has to be taken on an empty stomach, something that I somehow wasn't told until I'd been on it for years and so I don't worry tremendously about that since I do fine with the current dose).  It also needs to be taken consistently.  The problem with this is that when I have a bad spell I don't always manage to take it and time will pass and suddenly I'll know that I've not had it for far too long.  So I'll try to get back into taking it and if I'm still symptomatic with the bipolar I'll fail and eventually will have missed far too much, requiring new labs to be sure that I haven't caused a need for a dose change.  In the past I changed to taking it at night and did that for a long time but this summer I was doing great with taking it in the morning and I was taking another med in the morning as well.  That med just has gotten pushed down to one dose which isn't ideal but I can't help it right now.

Anyway, I had written to him that I would probably need labs, messed things up, etc. and sorry.  And instead of telling me how important it is to keep taking the medication or pointing out that having my thyroid out of whack will make my bipolar worse or any of a dozen other tactics he just said not to worry, that I hadn't done anything bad but that we'd check labs in case and that taking it at night was not a problem.  He didn't have to be nice; those other things are all true.  But as he always is he was understanding and patient with me and I need that little bit of kindness.  It took forever to find a family doctor who was well, willing ot be my doctor at all, and who would also work with me to make sure that physical problems were addressed but without messing up my psychiatric issues or causing drug interactions.  Back when I started seeing him and he agreed to that I was "only" on lithium and depakote so I had interactions but not as many or as dangerous as I have now.  He's seen me through numerous times I've messed up my thyroid (giving him further right to get frustrated, and he might but he never shows it) and has handled drug allergies, medication interactions and restrictions (plus meds that I can't take because the side effects are too extreme for my bipolar) and he has always been patient and kind.

That's not something you find every day or easily.  I had a year that I just couldn't find a primary care doctor who was in my area and would take me as a patient and in that time my crappy but at least he'll see me doctor refused to treat severe cold sores that I had on both sides of my mouth that were so deep they bled and were there for 7 months before my psychiatrist finally said it was ridiculous and treated them and I wound up reporting him to the medical board who investigated him (but found him free of wrongdoing a year later) after he said "you can't take this antibiotic with depakote so here's this one".  It didn't work so I called back and he didn't want to see me, called in a script for the med he said I couldn't have.  I called the office again and another dr called in a safe script.  That didn't work so I called in again and once again he prescribed the med he had said was contraindicated.  Again I called back and was given a different antibiotic, this one make me extremely sick and I called again.  I'm sure you can guess what happened.  So after that I complained to the medical board who took it seriously and then I had to find another dr and found Dr Body, newly done with residency and very willing to take a challenging case.  It took a few months for him to get used to the idea that I had the conditions I did and was still functioning in the work role I was in but once he stopped forgetting I wasn't on medicaid we did great.

He has no idea how much his little kindnesses help.  I could never explain it to him.  I hope he knows at least a little.

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.

Sunday, October 26, 2014

Med changes suck

They just do.  This is the 2nd day on my slightly increased gabapentin.  I am not sleepy at night but I was groggy today.  That may be the flu shot residuals, it may be depression, it may be exhaustion and it may be the med.  I don't know how to tell.  Maybe tomorrow it will be more clear.  It did not feel medicated.

The thing about this is that this is one of my "it may or may not work but it can't hurt to take it meds".  We know it had some effect when it was started and when I went from 300 to 400 mg.  So it does something.  There is no way to know how much though.  Probably not a lot, especially with the low dose.  I don't think it even really has research showing it acts as a mood stabilizer, despite lots of people being on it for that.  I'm willing to take it because at some point in the past it did clearly show that it helped a bit.  But I hate not having any way at all to know what is going on now.  I'll know in a few days if my mood is more stable I guess and if it isn't and I can tolerate it I can increase by another 100 mg.  That's the dose where I had a lot of problems in the past but other variables were in play then that make doing it this way worth a try at least.

I honestly feel like just laying in bed, closing my eyes and refusing to move or take meds or think for about a week.  I think I may cancel Dr. Mind since I am tired from the med (or from whatever) and I think that rest may be more beneficial this week because he is feeling so bad that he just isn't himself.  I can't see handling very well getting up and driving up there when exhausted and then having him not be well enough to do the session.  If I do that it would give me 5 days in a row without any appointments.  And that sounds blissful right now.

Otherwise I seem to be getting sleepy.  Going to take advantage of that.

Friday, October 24, 2014

or a flu shot

When I was feeling so bad yesterday I forgot completely that I got a flu shot on Wednesday.  I'm still depressed, that started before Wednesday but I don't think it is getting as bad as fast as I thought because once I rolled on my arm and remembered why it is sore I remembered that my mom felt bad after hers and that being so tired I didn't want to be out of bed would be a reasonable reaction to depression PLUS a flu shot.  So today I feel slightly better.  Not great, still depressed and tired, but I made it until I can stat my med change and tomorrow my mom is going to help me get my house clean again.  Which will be a vast improvement.  I've just barely been here in almost 2 weeks and that's not good.  One bad thing about a tiny place is that mess accumulates rapidly and just a little bit of stuff out of place is enough to look like a disaster has occurred.

The other thing with being tired that I need to remember is that I have not been allowed or able to exercise much at all for 19 weeks.  I can't even just take a walk yet, not long enough to really be exercise for more than my ankle.  So the increased intensity in PT this week may be more draining than it seems like it should be.  It's a long time still before I can do real exercise (not until January at the earliest) so I need to just remember my stamina is down.  I also want to find out if I can walk on a treadmill at home. I'm doing 5 minutes at therapy now and since my mom has a treadmill maybe I can start trying to walk on hers enough to get some real exercise, even if it is the 30 minute miles I'm walking now and without an incline.  Anything would be something at this point.  The treadmill also makes me practice proper gait and the more I practice that the sooner I will not be limping and walking with an exaggerated heel-to-toe pattern like I am now.  I want to walk so that nobody knows anything was ever wrong with my ankle.  It will take a while longer but that's my goal.

First though, I must recover from this flu shot that has attacked me so viciously. 

Thursday, October 23, 2014


My mixed episode dramatically changed from being primarily agitated to being very depressed in the last 48 hours or so.  I went from sleeping less than usual to wanting to do nothing but sleep.  I'm even falling asleep before midnight and taking naps.  Those things never happen.  Tomorrow I increase my gabapentin which we hope helps and doesn't snow me.  I've been on 400 mgs of gabapentin for quite a while now without major problems but in the past 600 mgs was enough to knock me out and make me completely incapable of doing things like writing emails (I actually sent emails that read sdkjflasjdfoiajr and not to the person I intended to get that priceless message) so we don't know for sure what 500 mgs will do.  I hope help me feel better fast.  I suppose I probably could start my light therapy now but I want to see how things progress for a few more days before risking increasing the mania.  It's so hard to believe it is there, even my PT noticed today that I wasn't myself (ok, I've been going there 2-3 times per week for 2 months, probably it's not that surprising that they notice; the whole staff notices when I'm using the treadmill instead of the easier recombinant stepper) but still I usually can hide this for 45 minutes.  Not today.  If it doesn't work I have no idea what will happen because as far as I know the only remaining options are to add older, often nastier anti-psychotics at a low dose and hope for the best.  Because of my history of movement disorders that has to be done very carefully and we've tried to avoid it.  I also don't want to have to take meds 3x/day.  I'm just getting back on my morning meds, which often are forgotten when I have an episode.  Since one is thyroid it is probably part of why I feel so crappy but I can only do the best I can.  I'd go back to just taking it at night but I need to take nexium twice a day with this much Seroquel so I have to remember the AM meds anyway.    Even then I break the rules. I somehow didn't know synthroid had to be taken on an empty stomach and never did it that way so my dosing has always reflected taking it not quite right.  Not changing that now.

I realized today that it is going to be five years in a couple of days since my first hospitalization and starting Emsam.  That is one med decision I am absolutely glad I made.  Emsam and Serqouel XR made a huge difference in my life and even though they don't work as well now as they used to they probably keep me from feeling much worse than I typically do.  I was so afraid and the whole thing was ok.  I just remember how much of that depression I wore on my face and hate knowing that any part of this one is also visible.

At least tomorrow I'll be back at my house in my bed with my poor cats.  I've been dog-sitting for 2 days and the timing just couldn't have been worse.  I'm also mad because somehow nobody asked me to do this and I found out at the last minute when I had planned a med change already.  I need so badly to just be able to sleep as much as I want to for a couple of days.  If I cancel Dr. Mind which I might I don't have anything until Wednesday which would let me get some rest and adjust to my new dose of gabapentin.  I'll figure out Dr Mind this weekend.

Otherwise not sure what to say.  All I want to do is sleep for as long as I can and with the dogs that won't happen.  Hopefully they'll let me go back to sleep in the morning like they did today.  Also hopefully my mom will be home earlier than I really expect her to be to take over.

And I just realized that I have only a week and then time change rears its' ugly head and will mess with me even more.  That is really not good.  Hope I get through a lot of this in the next few days......But in reality things just are going to be kind of rough for a while.  Lots of tough changes happening any time now.  Holidays.  Potentially the first holidays with things vey different than ever before and they will be very different no matter what.

Anyway, I have nothing interesting to say.

Tuesday, October 21, 2014


This is the least I've posted in any month ever.  It's been a hard month to come up with things to say because usually I am writing about what I am thinking about.  This month I've been running from my thoughts.  Partly this is a mixed episode that started longer ago than I realized and I just haven't been in the mood to write.  There has been a lot of grieving over my brother and I don't want to write much about that on here.  But there's also been an issue with Dr. Mind being sick and he has missed some appointments and when he is there he is kind of out of it and so while he at least made sure I got the mixed episode treated medically last week (sort of; read on) counseling isn't the support it usually is and that's making me avoid my racing thoughts in every way I can.  That's been even more true as I've been pretty paranoid this time around and it's better to not let your mind and words run free while paranoid. 

Dr. Mind being sick has been really hard.  I don't know what to say beyond that aside from I miss him and I feel so bad because he truly has been suffering terribly, but this is showing me how grateful I should be that he isn't leaving.  To be honest I'm sad for him that he isn't doing that, he really wanted to and it was his dream for many years and it is so hard to have a decision made by your health.  But I know now how much I miss him when I'm seeing him every week so I can't image having to say good-bye.

Along with those things my life is just busy now.  I am only doing PT 2 times per week now instead of 3 but I usually spend around 2 hours a day working on it at home on non-PT, non-painful days.  (Sometimes I overdo and pay for several days).  On painful days I do a lot of stretching.  Last week my mom was out of town and I thought I was going to have a very quiet week but right before she left a golden retriever mix showed up.  We did everything to find his owners and nobody responded or contacted the pound.  So I went to get tags for him and the pound lady remembered him from him being in there the week before after running away from home.  I told her to call the owner (he was legally mine) and arranged to have him picked up. Then I cried all day.  He had been neglected and had no socialization with humans or other animals and he is the smartest, sweetest boy ever.  I wanted to keep him so badly.  Giving him back was going to be awful.  But she actually asked if I wanted him while I was working up the courage to ask if she wanted to give him up and so we gained a dog.  He's really my mom's, I can't have a dog with my cats in this tiny space but I spent all of last week with him helping him to adjust.

I had a med change ordered (increased gabapentin) but we agreed I should wait until my mom was home to do it because I had trouble being very out of it on a higher dose of gabapentin in the past and we've kept it low to avoid that possibility.  I wasn't very aware that I was out of it the last time so I wanted my mom to tell me if I was out of it and unsafe to drive.  I arranged PT so that I'd have several days to adjust and then found out that my mom was going to be out of town with my sister and nieces for a few days this week and I'm dog-sitting and somehow they forgot to ask me.  My mom feels really bad about it but I'm not going to get to start the med change until Friday night now.  I'm just not going to worry much about missing counseling Monday.  It's not going very well anyway and this is a dreaded 5 weeks between social security checks month so missing a counseling session helps my budget greatly.  I just hope that it works.  I'm tired of feeling bad and I really need this drug to help because the options are quite limited.  Dr. Brain has a few people on more Seroquel than I am taking, however it doesn't seem likely that I could handle that because I am having a very difficult time peeing on this dose.  And once you are on so much there isn't a small boost that is going to do anything anymore; 50 mg is such a tiny percent of my dose that it isn't going to be more than a drop in the bucket.  I had a panic attack that was really bad a week and a half ago and I absolutely couldn't pee until it settled down because I have to focus on relaxing to go and mid-panic attack (it lasted a couple hours) I can't do that.

I can't even remember what else has been going on.  My keyboard wasn't working for quite a while and that was making typing a blog post pretty difficult.  My Anna cat seemed near the end for a while but I took her in and begged for an antibiotic shot to see if it helped her because she seemed to be at the end for days and that turned into a couple weeks and nothing was happening, so I talked to the vet about hospice and she can have unlimited antibiotics until they don't work anymore, and she has been doing great for the last few weeks.  I cut back her nausea med to once a day and she is actually eating cat food again and eating a much larger volume than before.  Hopefully she doesn't get puke-y again. 

I spent quite a bit of time with my brother last week and we talked and laughed and I honestly felt good being with him.  It was a good thing and very much needed.  I hope that I can maintain something like this until things change again.  That could be about any time now.  It could be months more but it is nearing the average wait time.

otherwise I need to empty the kitty litter.  I really meant to do that earlier but I fell asleep.  I bought some of that new lightweight stuff and maybe it is ok for cats who aren't in renal failure but for my cat who pees gallons it sucks.  So I have to totally empty the thing and start over.  I'll wind up with a smelly trash can all night because i'm not going out in the cold to the trash bin but it's better than a smelly bedroom.  I want my Anna to be here as long as she has a happy life but I absolutely will not miss the kitty litter in my bedroom.

I am so tired.  Maybe I'll get to sleep early tonight.  It would be great since I have to sleep at my mom's the next 2 nights.  Ugh. 

Or can I just fall asleep with icky litter one night??????  I think we shall see.  Tomorrow is so much easier to manage all that.  Or not.  Guess it depends on falling asleep.

Thursday, October 16, 2014


I am still here.  It's been a crazy few weeks.  My laptop keyboard settings were messed up by my cat walking on the keyboard one night when I fell asleep without closing my computer.  There have been trips to the vet, a very dramatic story involving adopting a stray dog while my mom is on vacation (he'll be hers), there is PT and this week was my first day with both Dr. Mind and Dr. Brain in the same day (which works out to a very, very long day), sleep deprivation, a mixed episode, a few days of being really paranoid, some changes in how I am seeing my brother (again and this is partly why I'm not writing; I can't explain it well without saying more than I want to at this point) and more. I'll catch up soon but probably not until my mom is back and I'm not watching the new dog constantly.  He's a very good Houdini so I can't just let him into the dog yard until we know for sure he cant jump the fence.  I even spent a long time today with a drill, spare boards and zip ties sealing off an opening so he cannot possibly get out that way. 

I'll be back soon.

Wednesday, October 01, 2014

Two shoes!

I haven't been feeling very good the last few days (stomach issues and now a migraine would like to start along with that which is directly from a very long day going to see the orthopedist with the largest possible number of bad drivers each way).  So I'm going to keep this short but it's a big day, so here goes:  I am weaning out of my boot and into a shoe.  I took my first steps unsupported at his office and then at home I wore a shoe for a couple of hours until it was really making my incision sore.  I'm going to have to wrap that for a while until it toughens up.  There are places that the incision goes over these bone anchor things whichare little pins things that will eventually be absorbed into the bone.  They stick out a little and rub the healing tendons and irritate the skin as well.  I can't do scar massage yet because of them. And they seem to be getting pressure from the shoe as well.  I have a brace to wear when I'm in the shoe for the next 3 months.  Since I won't have that or the shoe on at night I guess I'll be using crutches at night until I can walk barefoot safely.  I am retiring the night splint though.  Free sleep!  Bliss!

He confirmed everything has healed well.  I've been having some concentrated soreness and he was able to get my repaired tendons to come in and out of their groove a little bit but not like they were before and not in a way that is bad, just something they are doing enough to get sore while healing.  I don't know if that will stop when they aren't inflamed anymore.  That would have been a good thing to ask.  If they are a problem I know there is a procedure to widen the groove they rest in; I'm not sure why I didn't have it with the other if there is an issue but as long as it is harmless I do not care at all.  The ankle is welcome to click away.

And now I'm going to try to figure out whether my tummy or my head needs help more.  I so much want to go to sleep but if I do I will wake up at 11 and be up until 6 and that would be bad.  Big day showing off in PT tomorrow.

I thought I had one more thing to say here but my tummy is making it hard to focus and get through thoughts.  So another time I guess.

I go back New Year's Eve and that will be my final visit and should be the end of the brace as well.  At that point I will be 6.5 months out so it will be about time.  I never dreamed it would take so long.

Monday, September 29, 2014


I will start this by admitting that I am obsessing.  For most of the time I've been recovering I've known what day I was on.  In the last few weeks I lst track of the week.  I figured that out today and now it makes sense again that I thought I was walking at 4 months, not the 14 weeks I seem to have gotten my brain stuck on.  It actually IS 4 months. 

I am so afraid that he'll see something wrong.  I know in my mind that it is great but my perspective is weird when I look at it and the swelling that has built up in the last week or so makes it look really weird.  It's probably also weird because I don't have normal anatomy but I don't know that yet.  I am sore in a different place, a place with puffiness and it feels like something is rubbing on something else.  Realistically a tendon is rubbing on a bone anchor, which is going to resolve itself as the anchor is absorbed into the bone.  But it feels strange.  Not strange bad necessarily, just strange. 

I am so proud of my ROM and that I even have some strength in all planes.  Dorsiflexion I even have fairly reasonable strength, I think a 3/5, maybe 3+ if he was generous.  I have been stretching a lot on my wobble board (a circle that has a round base so that it tips in all directions.  At first I practiced control of movements with it, now I use it to stretch at home and we use weights on it at therapy.  I can move it more than I thought I would be able to by this point when I got the last cast off.  I even can alternate feet on the stairs if there is a rail and the steps are deep enough.  I won't be able to do that without the boot for some time but I can do it now.

I think I'm just conditioned to getting bad news about this ankle.  All the times I've heard that I need surgery, the injuries, the inability to treat my sprains because the damage was already done.  And now I have to learn to trust it.  That's not easy.  It's especially not easy when things are different.  

My foot is still returning to foot shape.  Scar tissue has altered it's shape quite a bit.  One of my exercises really pulls on that and I do the exercise many, many times per day to help with that.  Once before I was doing that and felt scar tissue tear and a nerve came loose from the scar tissue, causing some weird nerve sensations and burning for 5 minutes or so.  I think I am on the verge of having more tearing and probably more nerve release as I feel what I was feeling just before that happened.

I am scared of what he'll say about the popping on the inside (all surgery was in the joint or outsde).  I know that in reality he'll probably say that I still had a lot of swelling in the joint on that side when I was last x-rayed and that it is irritating a tendon or ligament. 

It's all stuff I can answer myself but it's hard to not worry.  After 4 months you want to hear that things are perfect in the healing process.  Honestly they probably are although I may have more irritation on the outside of the ankle than normal; that has just flared up the last few days. 

Whatever.  It is still several days away.  It's a combination of excitement and terror that are hard to explain but which make it hard to wait and hard to not worry.

Maybe I should sleep some......another busy week is about to start.

Oh mother

Today we were watching my nieces play.  Anne tends to get a little rough with Geraldine and gets right up in her face.  Geraldine usually goes along but gets tired of it eventually and moves away.

Anne has certain behaviors and characteristics that are very reminiscent of a little me.  Nobody is about to diagnose bipolar anytime for a many years but I think that at some point it will at least be considered.  Right now she has sensory issues and I think my sister is going to start working on getting her some treatment for that.  She is an extreme sensory seeker, which is partly how she winds up getting to be too much for her sister.

When we were watching them today I commented on the sensory thing and my mom asked if I thought that this could be what messed up my relationship with my sister.  Apparently I was just like Anne and eventually my sister started not wanting to play near me much because I was too much for her.

I didn't know this.  It hurt me so much.  I do not think that it is the biggest problem my sister and I have.  The biggest problem we have is the dynamics of several abusive relationships that put enormous pressure on us and we coped differently.  But my mother now has made me feel like this is my own fault.  I know it isn't.  But that hurt.

I also think that mostly what happens there is normal.  Maybe it's a little excessive but a 4 year old and a 1 year old play very differently.  And they are siblings and they are competing for attention when they are with grandma and Aunt Jen.

Just more confusion.

Saturday, September 27, 2014

I think

OK everyone, I'm going to lay this out on the line.  Several hard things are pending in my life as you know if you've been reading.  Thankfully Dr. Mind is not leaving at this time so one of the worst is gone.  But oddly the others are so huge that I haven't felt the relief I thought I would.

I am very concerned that the time I have with my Anna cat is drawing to an end.  Monday night she was horribly, terribly, painfully ill, vomiting a huge amount of food (I messed up and gave her something with grain in it that I thought was grain-free; her body can't handle grain anymore) and then she had intestinal cramps so severely that I could SEE them.  I was up most of the night with her and knew that it was likely that we would make that awful last visit to the vet on Tuesday.  But around 5 AM she settled into bed and woke up without cramps or vomiting.  Time beaten that day.

But since then she hasn't eaten much at all.  Today is the first day I've seen her eat much and that much is relative; she's had maybe 2 tablespoons of food at best.  She isn't even asking for food very often, in contrast to asking for food 17 times a day before.  She is drinking a lot and still urinating normally.  She has confused periods that are worse than ever before.  And I believe her body is retaining fluids although that is hard to determine. 

All I can do is keep offering a lot of different foods and water.  I may take her to the vet to be tested for a UTI but there aren't many symptoms of that so I'm not sure.  It's hard because I'm afraid the trip would make her feel bad and a bladder tap is definitely not painless (although apparently it's not so bad they tell me) but I don't want to have this happen over something treatable.  So probably we'll go in unless she is all better tomorrow.  Which she has done before.

But realistically I think my time with her is just drawing to a close.  The confusion being this bad is not good (earlier I found her lost in the basement) and she is having trouble doing things that haven't been problematic before now (I have an old entertainment center by my bed that she uses to get up and down; today managing that was hard).  She will cuddle and purr if I pick her up but it seems to be uncomfortable to be lifted up. 

I've known for a long time that I wouldn't have her forever.  She is 19 after all.  So for years I've known she was very old.  And she's had renal failure longer than she should possibly have survived.  There have been other times that the end seemed near and then it wasn't.  So hopefully that is true again.  But it would not be smart to assume that was true. 

I think that I am going to be facing on of the hardest losses of my life soon.  And I have no idea how I will survive.  I know that some of you are thinking "it's just a cat".  And I know she is a cat.  She also has been with me longer than every person in my life who is not related to me except for one.  Well, 2 if you count a facebook friend. She is intricately woven into my bipolar disorder; when I cry she comes and I cry onto her soft fur.  When I need to just scream she waits me out and then comforts me.  When I have panic attacks she is always immediately there and soothing.  Even these days when I hold her and talk to her about telling me when it is time to say good-bye and make a point of telling her every day, often a few times in the day, how much I love her and will miss her, when I get teary she snuggles in and purrs, as if she is comforting me when it is her who is sick.

She doesn't do many of the things she once did.  It used to be that she helped me wake up from the grogginess of the meds.  When the alarm went off she would cuddle up close to my face and keep me awake until it was time to really get up.  She was trained early on (on purpose) to meet me when I walk in the door and she doesn't do that now.  Mostly she is too soundly asleep to notice what I do.  She always fought medication but now she just gives me a dirty look when I dab her ear with the transdermal med that keeps her from vomiting day in and day out (that's not working as well lately either).  She is slipping away and all I can do is watch.

There is a very weird part of the grieving that is for the loss of expectations.  I had decided long ago that when she was gone and I was ready I would get a kitten.  But now I will be taking my brother's cats so I won't even have the comfort of a little fluff ball reminding me of Anna's kittenhood.

It's just so sad.

So be ready.  One day, I have a bad feeling soon, there is going to be a very painful post here. 


My boot will begin to come off Wednesday.  I think I've been pretty patient for the last 14 weeks but I am really fighting to stay patient for this next few days.  I'm moving around so well and having so little pain as long as I do my exercises (I do them a LOT and get really stretched out every day) and I am just ready for the next part of the process.  I think the thing is weaned off gradually and I'll probably wear a light brace for a while (I plan to pack several braces so that if I have one that is acceptable I don't have to buy another orthotic device; I've bought at least 3 or 4 this year not to mention all the casts).  Even my PTs are feeling like we're in a holding pattern and ready for the exciting part to begin.

I don't know why waiting another 5 days is so hard but I think I've just reached the end of my patience with having to plan every movement.  Last night I stepped on something and cut my foot.  I thought I had stopped the bleeding but when I got off the toilet I discovered it had actually bled quite a bit on the floor.  So I cleaned it up and then had to be extremely careful to not put my crutches down near the wet spot. Tonight I was watching a movie and hit eject accidentally on the remote when I leaned over to do an exercise.  I had no crutches and putting my boot on and off in 2 minutes is a huge ordeal.  So I was going to finish exercises without distraction but somehow found a way to trick the tv into restarting the DVD eventually.  But it was so frustrating; the tv is like 5 steps away and I can't do that.  And it has been 14 weeks.  Nearly 4 months.  Somehow that seems like forever right now.

I'm emotional anyway.  My cat isn't doing well.  She was extremely sick a few nights ago and I was  up all night and prepared to say good-bye that morning but she rallied.  Since then she's really not eating much.  Even things she usually likes she is mostly ignoring.  So I am worried.  The worst thing the vet could have done was what she did back in June--she was trying to be honest that Anna wasn't going to live for a very long time but she made it sound more dire than it has been. But because of what she said every time Anna isn't feeling good I am afraid.  I know perfectly well she won't be here forever and I knew that before the vet.  She is 19.  Cats don't often live that long.  All time now is bonus time.  But what I didn't need was the list of things that could happen any time she was unwell.  We've done this before and chances are good she'll eat in a day or two.  It may be that I need to try another food option and that the one that was her choice for the last months isn't now.  Or she needs tuna.  I went for chicken instead and she isn't thrilled with it although she drinks the juice.  Time will tell.  She seems to be feeling ok, just not eating much.  It's hard.

My emotions are out of control.  I can't begin to tell you the things I've cried over in the last few days.  It's probably SAD in part but I'm too agitated to start using my light.  This happens nearly every year. 

I'm also anxious about the ankle.  Can I really walk in a shoe?  It is so much better but it still is not close to 100%.  I'm afraid of hurting it again.  Perfectly reasonable but still hard to cope with.  It also feels very different because it is reconstructed and not like an anatomically normal ankle and so I have to get used to the feeling.  Thus far what I've experienced of that is weird.  It's still swelling in one area and I have some places with decreased sensation.  Normal but weird.  I also have a loud popping on the inside of the ankle that concerns me.  I think I know what it is but not why it is there.  Everything was done in the joint or on the outside.  And this popping is really loud.  It's probably fine but I have 5 years of training in "the ankle is bad".

Tomorrow is time with my sister and nieces.  So excited for that.  I love those little girls so much.  I can't imagine life without them.

And on a happy note we'll stop.

Thursday, September 25, 2014

Brain on bipolar

I've been pretty stable for quite a few months, actually an extemely long time for me.  Vicodin is stabilizing for me so taking it quite a bit for the early part of the summer was probably good. Sleep has sucked but I can't use my weighted blanket because it is too heavy and I could hurt myself kicking it and I'm not willing to take anything more sedating for fear of falling so that is really on me.  There are solutions and I am too afraid to try them.  Perhaps when I get a brace next week I can manage to sleep in it and a slipper of some kind and get up and walk as needed, once I reach that point.  But for now it's out of the question.

My mood has been drifting.  It's probably partly SAD but as often happens with SAD for me the depression triggers everything else and so I am mixed which means it's not a good time to start using my light.  Increasing the activation is not good.  Usually I don't get the light going until about November because of exactly this situation.

I'm really struggling with things.  I thought yesterday was going to be the day I euthanized my cat.  I was pretty sure for a number of hours during the night because she was suffering.  But then she turned it around, again.  How many times she'll do that is unknown; at 19 she is living on borrowed time no matter what. But losing her is going to hurt so much.  She's been my best friend for half my life.  Nobody else has let me cry on them hundreds of times, ignored me when I was sceaming or sat on my lap and purred through the entire writing and revision of a thesis.  Nobody else has moved to Michigan and back to Ohio and then several times around Ohio with me.  Nobody else has the ability to sense when I am losing it and no matter how old and sick they are come to comfort me.  Her loss will be huge.

My brother's situation is getting to me.  I am so angry at him and yet anger at him is pointless.  Because of his Asperger's he simply doesn't get it.  I did not know this until this week but I don't think I have ever once just had a real fight with him because it is pointless.  He doesn't see other sides to any situation.  Never has, never will.  We all adapted to that.  It's like my mom and I were talking about today, he is so hyperfocused on things that don't matter that I timed him at 7 minutes talking about something that was so egotistical that it was only funny because it was so pointless and another probably 5 on something involving the word "grammarian".  He has this egotistical laugh when he gets going with this stuff. He gets so focused on one thing that he doesn't change what he is doing.  For example instead of filling out food stamps application yesterday he spent an entire day crushing cans.  Most people would intermittently do that while doing other things.  He crushed something like 15 bags of them in a day.  His hyperfocus led to so much of this.  He has ALWAYS had a "thing"-dinosaurs, comic books, Mash, rocks (I swear this is true: he has boxes of rocks from all over the country.  They are just rocks, not anything special.  He can pick up a piece of sandstone and tell you where it came from---state, location, which trip he was on and what campground they stayed at.  And those rocks have been moved with him since he collected them from age maybe 8 on.  He's almost 50.)  So his hyperfocus just changed to things that were criminal and also to alcoholism.  It's like his motto is "do everything to extremes".  In 2011 on vacation I noticed how much he was drinking and talked to my mom about it.  She thought I was miscalculating but by the end of the trip it was hard to deny how much beer had been consumed and how much of it was the cheap stuff he brought in a huge box and then re-stocked.  In 2012 I went outside at night for a minute and on the way out found him in the basement den on his phone with 7 bottles of beer in front of him.  My room was above the trash cans and later that night I heard him take them out.  I mentioned this to my mom who said no way, she'd cleaned up 7 bottles in that room in the morning.  He had just handily covered up the fact he'd had 14 bottles of beer after everyone went to bed about 9 or 10 and he'd had one in hand all day.  Now it's easy to see.  Then it was easy to make excuses.  But the truth is confronting him about it wouldn't have worked.  Nothing like that ever has with him.

I get that this is out of his control (the Asperger's).  But I also believe that you work with what you have and that you are responsible for yourself. At some point you have to look at your life and see that what others are saying has value.  My mom is having to treat him like a small child. 

I don't know what else to say.  I just feel like there is so much I need to feel and think and say and I can't say it to the person who should hear it.  I'm scared of how this will go.  I made it through the beginning of this part of my life mainly because of shock.  But this time there won't be shock and I'm scared that it will be like the last time things happened in my life that I didn't know how to handle and I'll wind up in the hospital. 

I just want to know how to feel and act.  And nobody writes guidebooks for this.  And if they do I don't want to read it because I don't want to read someone telling me how to feel when I don't really know myself.

I hate this.

Wednesday, September 24, 2014

want to know a secret?

I am less than a week away from starting to walk with a shoe on my post-operative foot.  I am walking all over with the boot now without problems, even alternating feet on the stairs sometimes and handling our uneven, gravel driveway easily enough.

I bought a lot of shoes.  Different sizes, different styles to make sure that I had shoes that were right to re-learn walking in.  I have been wearing extremely supportive shoes for years and those didn't seem like the right idea because I think I need to be able to feel the surface I'm walking on more than I can in those shoes.  So I got a variety of flexibility in the soles.

Tonight I tried on a pair and just messing around in sitting could tell this was the pair that I will want.  I stood up in them with some weight on my foot and it still felt good.  So using my crutches for most of my weight I took 3 steps with the shoes on.  It wasn't allowed but I'm so close and was so careful to keep the weight very limited that I wasn't concerned.  It feels incredibly strange to do that after nearly 14 weeks.  But it didn't hurt and the shoe definitely lets me have feedback that I'm going to want.  They are also very well-padded which is important with an incision that gets sore when it swells which still happen sometimes and probably will for another 6-8 months. 

So we're not admitting this to anyone but I have taken my first baby steps.  Sort of.  Not really since there was so little weight involved.  But kind of.