Sick

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.....

Thanksgiving

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.

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.

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.

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.