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.