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, June 30, 2010

Strange day

It started so well. I got to work and they'd gotten donuts for everyone, and the box said they were for everyone on our "nursing, PT, OT, and home health aide staff who does such a good job". Which means they remembered ME, since I'm the OT dept. I also got my very own voicemail box. It still would be nice to have my very own place to oh, use the phone or connect to the network (and they made it harder because they pulled out the network line in the conference room that I had been using), but we're on a good path.

Unfotunately that was the best of the day. I spent most of the drive down here trying to get my home phone line repaired since it wasn't working. After I FINALLY got a human after 7 calls I was told it might not be fixed until Monday. At which point I pointed out that since they can't provide consistent enough cell coverage for me use at home despite having been assured that would be no problem, then not fixing that line, they were leaving me for days with no way to call 911 despite being paid huge amounts of money/month to achieve this. I gave up. I went back to the provider I left 6 months ago because of being told one thing and then receiving a $300 cellular bill. I did that tonight and I don't even regret the cost. Much.

I had another good moment when my contract was renewed (it's not even up for 6 weeks) and I was told how pleased they are with me. I suspect this is less so today, but truly a lot of what they thought was me missing paperwork was them not looking at the handwritten stuff I did, so that helps. I think.

Then there was all this paperwork that was messed up from last week because of my computer problems, including one visit I've done that is non-reimbursable. I don't know what happened there, I very clearly remember writing up the orders, but somehow they either were deleted or lost in cyberspace forever.

Then this lady who I always see on Wed. and Friday went out of town for about a week without mentioning it to me previously. Which is good in that it opened my schedule, but it is bad in that I would have seen her earlier in the week if I knew. So, one whole week of missed therapy.

My first patient was furious with me, as was her caregiver, because of the agency's decision to call her family and MD and file a report with adult protective services based on my visit a few days ago. The caregiver I basically told she couldn't talk to me about this, which is true, but I am really annoyed because I know she got in trouble for not doing her job well and leading to some of the issues, and I think she led my patient to her high-pitched squawking and the every annoying insinuation that I'm too young to know how to do my job. I LOOK young. I have a chubby cheeked face that looks young and my curly hair adds to that. I also just don't show aging as much as some people. I have grey hair, more than people would guess, but it is mixed into the curls. I haven't developed wrinkles or what-not; that's just genetics. But it can be annoying. I am not that young; 10 years of experience is a bunch of experience in this field and besides, the decision was made by me, my supervisor, the social worker, the clinical nurse manager, and I believe the director of the agency. I made the calls because I was the direct witness, but still I feel horrible. I knew this was likely. I also know how badly she needs OT, so I finally convinced her to wait to decide to stop after the weekend and someone else is going to talk to her for me in the meantime.

Around then is when I broke my tooth. It was a cap that was placed years ago after a kid at camp smacked me in the mouth accidentally. I can't get it fixed for 2 weeks and even then I am going to have to mess with work hours to get to the dentist. Unless I can maybe move Dr. Mind that week......hmmm. Regardless it isn't the most pretty thing and it's kind of sharp. I swallowed the cap so i can't even stick it back on temporarily.

My next patient was fine. Thank goodness. We had a lovely time talking about where the camp I worked was, as she used to live there. Which is amazing as I never meet people who have been there. I can't wait to bring her some pictures of it next time.

Then I got a call that my new brace is in but they could only see me in the morning. I called and explained my situation and will be seen in the afternoon. I'm anxious about this new brace. I need it, I'm rolling my ankle in my current one that is only a few weeks old, and the new one just won't let that happen, but it also means accepting that I wear a BRACE, not an athletic support system. On the other hand the other option is surgery and brace sounds good in comparison. And I'm glad to get it as now I can go buy shoes at the specialized shoestore and have them fit everything needed into the shoe. I dread that, but my current shoes hurt. I think they stretched; they have too much leather for the instructions I was given. The orthotics don't hit right. I tried to switch to an older pair of shoes but can only find one of them and they hurt too from being worn out. So tomorrow is new shoe day.

Then I got a call that yet another patient cancelled, this time because his dog bit him. That scares me a bit as that is twice he's been bitten by the dog and although they keep it shut up when we're there it does come out and it now officially scares me.

So with all this I didn't get to the motel with supper and settled until after 7, then I took the fastest shower ever, ate, and now am going to plug in my work computer to charge and go to sleep. I am sooooooooooooooooo tired. I don't think I slept well last night.

I have no idea how tomorrow is going to go; I feel like I've missed visits with everyone but most of them can't be seen tomorrow anyway. So, it may be a weird day. Hopefully not weird like today. Today is the first time I have really messed anything up and that doesn't feel good. I know relatively that if I've done this 6 weeks and am just now making noticeable errors it's not that bad but it still is unpleasant.

Oh well.........

Tuesday, June 29, 2010

The antidote to overwhelmed

I've been struggling some the last few days. Worry about the baby, my reactions, time lost to resting last weekend (desperately needed but still, I had so much that needed done), time lost to my work computer dying last week, and stress because of some difficult cases of late, I've just felt like there wasn't enough time in a day. I've not sewn or done much of anything the last several days because I'm TIRED and what time I've had has often been spent writing progress notes. But today has made things feel a lot better.

For one thing I finally took time to work on a paper Dr. Brain needs to help me get Nuvigil through insurance, maybe. I noticed the ICD9 codes were different than usual. One is PTSD, which is now a more major diagnosis for me than in the past. The other was for bipolar mixed MILD. That's fun to see.

Second, every week we have team meeting. They always introduce new people and everyone claps and smiles at them. Today at the end of that she looked at me and asked "can I?" and I said yes, and so she told them I'll be staying through October and kind of made it clear I'd be staying. I got a ton of applause, a hug and some really, really nice things said about me. Including my supervisor saying "this is just where you belong". I think that's the nicest work compliment I've ever gotten. I fit in here. I've never had that happen before at work. Twice I have been close to someone i worked with, but never the entire team like this. I love it.

Third, one month into project start eating normal foods, Sunday I wanted a hamburger. We bought half a beef a while back and had individual patties made, so I thawed a 2 pack of those and ate one Sunday and then tonight wanted and ate another. That's MEAT people. Not only is it meat, it's healthy, lean meat. I swear that increase in protein alone feels good somehow.

And now I'm doing 30 minutes of paperwork. That way I can relax in the morning. Maybe.

Monday, June 28, 2010

Some days suck

So today, in the course of 8 hours, I:
1)created a lunch break last week to take away my overtime because I was afraid to ask for it to be retro-approved
2)missed .25 hours which I now have to deal with somehow
3) Found out that when my contract says "Paid time off: 3 days to be determined with 2 week notice" that this does not in fact mean I have days off. And when I requested permission to take the day off that i did the return email "got lost" and so I found this out when I didn't get paid for the hours I took off. Nor are they willing to admit that this is just a BIT confusing and that telling me might have affected what I did. So I lost pay and have "special permission" to go see the podiatrist again to have my brace fitted when needed, after being admonished that they set up for me to work 1/2 days on Thursdays so I could see Dr. Mind and that should be all I need. I'm still working 40 hours per week people. I work long, long days and that includes working most of a full day each thursday, then going to see Dr. Mind, then being exhausted on Fridays. Because that's the only way I can see all my patients. And when i told them I didn't need days off I am absolutely sure I said "so I'll be able to just take them when needed, right?" because I knew I'd want time off when my sister has the baby.
4) After a frightening sequence of events including the closest to a fall I've had a patient come in YEARS (and we're talking about 7 of those) I spent a very long time contacting an MD, talking to nursing, calling a family to tell them that if their mother didn't have 24 hour care something like immediately I was going to have to report her to adult protective services, and then filing that report. Which sucks but she was so, so scary.
5)I gave up cable TV because it cost too much, and then the state started giving our libraries about half of their old budget and that meant the library I relied on for books on tape since I can't listen to music for very long most of the time couldn't buy new ones, so I have been paying for that service for maybe 18 months now. When I took this job I increased my service to have 8 books at once, since when you drive 1000-1500 miles a week you listen to a LOT of CDs. Well for quite some time I wasn't getting my 4 at a time; it was always 3 but I was listening to some really long books and not driving so much so it was ok. Now I still have only 3 out (2 of which have really been returned, just not credited yet) but I am paying double the price of what I should have been paying for four. So I called and complained and while they allegedly will get back to me about the time I've paid for the higher level of service and gotten nothing, they don't care. And so I get to once again listen to the same CD over again, for the 2nd time in a row, and possibly a 3rd given that it takes a while to get the books and this only lasts a few days and nobody will apologize, nobody will take responsibility, and I suspect nobody will refund my money.
6) I checked my credit score today. I have been working my butt off paying off debt. I'm needing a new car by winter and so I've been paying every penny I could scrape up into paying off credit cards. Yet somehow, mainly because of the particular day that they used as the reference date I think (because I use my Discover to pay for most things and then pay it right off, but that means it has high peaks sometimes if I've had a major purchase, like $300 of tires in the last few weeks which are paid off now but weren't when the month closed one day last week) my credit score had dropped a LOT since January. There's nothing like working so hard on something and being sure to never, ever miss a payment and paying 4-6 times what is owed per month each month and seeing the credit card balance cut by a third in a month, yet see you will never, ever qualify for a good car loan for some mysterious reason. I know that by the time I apply a lot of the debt will be gone, and I learned today that you need to let things settle for a while before you look at the score, but still.........I'm sick about this.

I'm going to bed now. I've had it with life.

Have fun, do good

I found this thing yesterday that's fun. It's a vocabulary game that donates a grain of rice to starving people for each correct answer. The rice is paid for by ads that are at the bottom that you don't even notice, and it's quite challenging. It assesses you at first and then starts you at whatever level is indicated. If you miss one you go back a level; 3 in a row and you go up. It is difficult, but the correct answers are shown and you always get another chance (or 7) and so you really do learn.

I am having trouble prying myself away.


Saturday, June 26, 2010

My little brother

I realized the other day that I've mentioned on here before that I have a little brother who I don't see anymore and who I miss on a daily basis. I've referred to him frequently as I've talked about experiences that have made me more afraid of losing my neice/nephew. And I'm sure he'll come up again over the next few weeks/months.

So here is the story of how I grieve for a person who is still very much alive:

I'm fairly sure I've mentioned before that my father married someone who I wan in high school with, a girl 2 years older than me who he'd been abusing (versus being involved with; I don't see how their relationship is her fault really as she was a kid) for a really long time. Oh, and he was her teacher when it started. All that is a really long story that is rather sensational sounding (ie you would think I pulled it from the headlines; the only reason that didn't happen is the school district involved hid it and got him out of his teaching job).

I'm cutting many years out of this, but after my parents were divorced when I was 19 he immediately married her. 2 months later I found out I was about to be a big sister again. I was 20 years old. I also had been successfully backing away from him for about a year. When I learned about the baby I decided that I did not want to ignore this child's existence, and that truthfully the baby would need people not his parents in his life to watch for signs that things were hurting him/her. So I gave up the break from my father and plunged back into that bizarre situation.

I was supposed to be present when the baby was born. It refused to reveal if it was a boy or girl, and the doctor thought girl because the heartrate was high. However the doctor didn't know the mother was smoking through the entire pregnancy. It also failed the blood screen for chromosomal abnormalities, but further testing was fine so it was a false positive.

Several weeks before the baby was due my uncle died in a state about 12 hours away. The doctor cleared the baby's mother to travel because there was no sign of impending labor whatsoever. On the way home she went into labor. They drove as far as they could but the baby was born in a city a couple hours from where he should have come. I couldn't make it for the birth. This turned out to be a good thing as the call he was coming caused me to crumple to the floor and cry for many, many hours. I was clearly not quite as ready for him as I thought, on top of grieving for my favorite uncle.

At 3 Am the phone rang and I had a little brother with good APGAR scores who was staring all around and seemed fascinated by this new thing called earth. At 11 am the phone rang and they were taking him via ambulance, on a ventilator, to the children's hospital ICU after he stopped breathing twice and the 2nd time they couldn't get him to breathe again. The calls over the next hours were awful. He'd had a severe type of stroke; they couldn't assess the damage for several days/weeks (I don't remember now) because all they could see was blood. (he had the less common type of stroke where a blood vessel bursts, rather than a typical stroke where blood flow to an area is cut off. His type of stroke is more serious and had a much high fatality rate). He had also had several seizures, so was receiving multiple seizure meds. At that point the outlook was bleak and the best outcome was for a severely disabled child. I lost it. All the months of bravely facing this and making decisions about involvement totally fell apart. My friends made many phone calls to professors to get tests and papers that were due that week and the next in large quantities moved and I struggled to go classes. I went as I could, mainly if a friend could stay and monitor the phone. I made the painful decision that if he was going to die as it appeared I didn't want to go and bond. I knew that I would regret that in many ways, but I also knew that I'd have regrets no matter what I did and no matter what happened. When he was about 4-5 days old he ripped out his own vent and started breathing without difficuly. 24 hours later he was the step-down ICU with a much improved prognosis. The bleed had stopped and had begun to clear, meaning he wouldn't just bleed out into his head and the seizures were controlled. I went to see him and about 2 days later got to accompany him home, weeks before they had originally thought possible. The degree of brain damage was not known yet, but he was alive.

The time I spent with him in the NICU was strange. The didn't have anything set up for adult siblings, so we were given grandparent passes. His last full day in the NICU his parents were doing all sort sorts of required classes on CPR, caring for his apnea monitor,seizure management, etc. so I was allowed to stay with him all day. They took him to be circumcised and he came back crying. I've never felt anything like it when as soon as he was cuddled to me and I had a bottle for him he relaxed, took the bottle and snuggled in for a sound nap for about an hour.

His first 4 or 5 months were rough. He didn't reach milestones because he was so drugged. There was no way to predict what his outcome would be, but the doctors expected he would have some learning disabilities if not significant developmental delays. However, they also admitted they had never had a baby with that severe of a bleed and the seizures that indicated the brain was damaged survive.

When they tapered the seizure meds after he hadn't had one for a significant time period this amazing little guy appeared. I remember laying on the floor reading to him one night, just a silly Dr. Seuss book (Marvin K.Mooney will you please go now!), and something about my facial expressions and tone of voice was absolutely hysterical to him. He began to remember me between visits and although he did everything at his own pace he grew and developed all the skills he should have.

I totally fell in love. Yet knowing how messed up his life was likely to be because he was growing up the child of a child molester and the victim of that molester, plus all the abuse I had suffered from my father, I couldn't stand it. I wound up depressed and in counseling. At the beginning the therapist asked me if I wanted to just take him away. At first I lied. The next visit I admitted that it was all I could do to not just steal him and take him far away from what awaited him. And that was how I began to finally admit to the psychologist what really happened in my home. I had a very hard time for months, followed by my first really manic episode which I downplayed and therefore still wasn't diagnosed. After I crashed from that I did agree to antidepressants finally and my next 11 years were trial and error of medication after medication.

When he was about 15 months old a lot of stuff happened. This was during a period I was so manic and going through so much emotionally that I didn't sleep for weeks on end, so my memories aren't totally clear. But essentially someone accused my father of molesting their now-adult daughter, my childhood playmate and neighbor. There had come a time when suddenly she would not play with me at all that had never made sense, and I believe she told her parents I had done something because they constantly invited my sister to do things and ignored my existence for the most part from that point on. There were suddenly reports to children's not-protective services about my brother's care, destruction of property at my father's home, and anonymous threats, all of which came from the furious parent of my friend. And suddenly my brother's mother realized that her whole relationship was based on child abuse. I was with her when she realized, and have never seen anyone turn that white that fast. That night was when I found out that my parents had known since I was 2 about my grandfather molesting me. I somehow made it through the last week or so until I went back to college, and then practically moved into the counseling center for the next 4 months. During that time I was getting up to 6 hours of counseling/week and spending hours doing homework for it. I cut back to the minimum number of classes and my attendance was spotty. I gave up pretty much everything but work, because I had to do that.

At first there was so much fear. And then my brother's mother actually left. She called me from a shelter for abused women, which is where they lived for the next year or so. Ironically it is about 6 miles from my home now. We stayed in close contact for a long time and I actually lived at the shelter with them (in the halfway house) for 6 weeks so I could watch my brother while she was out of the country on military duty and I was taking a course I had to finish before grad school.

During those weeks (she was home part of it) we worked out a lot, including that she would work to keep his biological siblings part of his life. She knew that I had cut off contact with my father and that I had worked so incredibly hard to be comfortable with having this surprise sibling that I didn't want to lose him. Plus, I was special to my brother. We loved each other a lot. She continued to promise that we'd still be in touch throughout a horrid custody battle that ended with my father losing all visitation, rights to any parental decisions, etc. and was ordered to pay the highest child support possible (there was a penalty included or something). That was when my brother was about 2 years old I think and he'd rarely seen our father since he was 18 months and the child welfare system began to realize he wasn't a safe parent (not that this kept them from turning around and giving him a month's visitation just before they decided he was too dangerous to even have supervised visitation. Duh.) So he has no memory of his father. His mother promised that she didn't want to remove his biological family from his life and that her intention was for him to grow up knowing that he had another father, who wasn't well enough to be with him, and 2 sisters and a brother. This worked great until just after he turned 4 1/2 and she suddenly had no contact with me. Emails, calls, etc. went unanswered.

5 years ago I heard from her. They'd moved to the city where I used to live, where I see Dr. Mind, so were only an hour away. My brother was a 2nd grader then, and despite the doctor's warnings after his stroke that he would have learning disabilities he was a straight A student and doing wonderfully. He remembered me and asked about me a lot. I kept trying to arrange visits and she'd say yes and then back out. Ultimately I realized this was making my moods go nuts (enough I had to go on a new med) and so I very honestly asked her to be sure she really felt she could handle this because i was having so much trouble coping. I wanted her to tell me if it was too painful and if it was then we could try again later. I haven't heard a word from her since.

My brother is now almost 14. When he turn 18 I plan to start trying to find him on my own. When he is 23 and has had time to finish college and really grow up I plan to do whatever I have to in order to contact him. If he doesn't choose to be part of my life that's fine, but I need it to be his decision. People have told me for years that he will remember me and be curious about me and probably eventually seek me out but there is no way to know this will happen.

In the meantime I have had to deal with what has to be one of the cruelest ways to lose someone you love: he's alive and nearby and neither he or I made the choice nor can either of us do anything about it unless his mother makes a new decision. He is my brother and I did nothing wrong, although my father certainly did, and still I am the one who has lost so much. So has my brother, as I'm an awesome big sister :), but it is one of the great losses of my life, and it's not like I haven't had my fair share of those anyway.

So now you can probably see a little more clearly why having this new baby come into my life terrifies me. I don't want to love him/her and then lose him/her to something totally unfair. I have a hard time not equating loving babies with getting hurt, especially since this has also happened with my friend's baby, the friend who decided to keep her child from me because of my demon possesion (aka bipolar).

There is no feeling stronger when I think of first holding this new little one and falling in love with it than fear.

Friday, June 25, 2010

Not so invisible and an unrelated yet funny statement

Funny story first:
The place where my sister lives once housed a rather notorious psychiatric hospital. It was a huge state hospital and some things that are still used today were developed there. Some really bad things happened there too, of course, and the overcrowding in the middle part of the 20th century was horrible.

I lived actually on the edge of what had been another notorious hospital when I was in grad school, so I'm very aware of the stories that people come up with about this. They can be very odd. And people of course have plenty of misconceptions about mental illness.

So today I was talking about my sister's baby and the patient asked what hospital she'd use (not really understanding home birth). I told her the local hospital and her son said "oh, that's near the psych place". At first I thought he meant the old hospital, but he was referring to a newer place nearby and seemed kind of like "I was near there, I'm so brave". Then he started talking about the nearby apartments that are probably a halfway house type of thing and how he's not sure "they" should get to live unsupervised like that. Funny thing? The reason he observed all this? Work crew from county jail..........So somehow criminal activity makes you better than illness??????????? It's something to ponder. I had no idea how to react.

Second, today I realized that I feel really weird about my new ankle brace. I'll have in the next week or so. It feels weird to progress to this brace. I know I need to; I was the one who asked for something more substantial because I've worn out 3 of the current brace in 6 months and this last one is showing wear after only 3 weeks. And I'm serious about delaying surgery as long as possible. I have spent enough of my life on disability; 12 weeks of it when emotionally I'll be well enough to be bored sounds awful. I'll do it when I need to and won't complain; I am well aware I will eventually need to. But for the time being I'd rather brace it well and be careful.

My current brace shows when I wear it, but with long pants it looks more like a black sock than anything. It looks like this:

Today I became aware that it does show pretty clearly when wearing shorts, which I knew because I see my own reflection in doors and the like and it's emphasiszed by my slight limp, but today I saw one on someone else and thought "hm, she must have sprained her ankle. I hope it feels better".

The new brace? Well it is not a support. It is a BRACE. There are 3 levels of support in this design and I'm not sure which I'm getting, although based on the price I'm thinking probably the highest level, which is what I'm going to picture here (the next lower level just doesn't have the bottom strap and I know I need at least that much; the lower level wouldn't be enough):

I don't know how to resize and am too tired to figure that out right now, but as you can see, this is a BRACE. Under the cloth it looks like this:

So from the day I get this on, there will be no question: I wear an ankle BRACE. I've had to help people adjust to needing braces or splints so many times, I never though I'd need to listen to myself. Because ti is a really weird thing to accept. I know I need it. Like I said, I even pointed that out to the dr. who agreed so readily I suspect he wanted to suggest it but knew it would probably cost me a good bit of money. (It's not that bad really, about $110 with deductible etc. and I still have some money for deductible reimbursement through part of my benefits). But it's just odd to know that part of my body truly doesn't work, and is impaired enough to need plastic and hinges rather that just plain old strapping. I'm struggling somewhat with my new arthritis as well; I didn't expect that really until I found out how severe the injury actually was in March and that I'd had that old fracture (100% of untreated fibula fractures develop arthritis and apparently this was the trigger I needed to start that), and even then, well, I'm not quite 35. I'm not supposed to need to worry about arthritis and when the arthritic pain will be too bothersome to deal with and putting on a brace every day.

After I get the brace I will need to go get new shoes. The ones I have now have stretched and are heavy and aren't working all that well. I have to go to an athletic specialty store that will carry the specific things I need and have staff trained to fit braces around orthotics that have a lot of stuff involved as well as a brace, and I feel weird doing that too.

I guess I got so used to my disability being hidden unless I lost control for a moment, or I chose to share, that I forgot totally that I could still have to deal with something that looks "different". I know all about that, I grew up with a very visible birthmark and I suppose that's part of this; I feel I've paid my dues in the looking different department. With what I've had I've had a few patients ask about it but never anyone I didn't know or anyone in a social situation. This will lead to questions due to its' obvious permanence. The ankle thing isn't a disability, and truthfully if the brace stops my limp then probably it will be less obvious than the current one, but I think I fear a return to the days of the walker boot:
and the repeated questions that went with the duck foot. In some ways having to wear that thing again is one of the things I dread most about the far off surgery; I really hated it. Although I know now to request not aircast because the air pockets never were right. If I stood they were loose. If I got them comfortable standing they cut off circulation in sitting. That was a LONG month.

And now I'm going to start getting ready to sleep. I don't know that I've made sense here, I am sooooooooo tired, the kind of tired that made getting up today painful. But at least you get to see what my foot is about to look like, plus it's past 6 months of attire. Lucky you.

Tuesday, June 22, 2010

I think I got a responseo

I can't go into this much right now as I must get to sleep NOW because I have an early meeting, but I think I got some form of response, in that I got a very nice email from my sister telling me how she's going to tell the baby about Aunt Jen making all these things for him/her. (Weird, based on the last ultrasound pics from last week (the baby isn't in position and is trying out breech so she's getting some very late ultrasounds) I think it is a boy and so do most relatives, but I just about called it "her". Perhaps I don't really have any instinct).

Ultrasounds are becoming so amazing. While looking at this strip I said "Wait, is that baby LOOKING at me?" And it is. It had one eye open you and you can see the iris and pupil. I didn't even know they opened their eyes in there. It also has very long eyelashes and tons of hair and is very chubby. (Unfortunately my sister needs a small baby for a best chance at natural home delivery and this baby is trying to be a breech giant. Please pray for her as she'll be heartbroken if what I suspect is going to happen does: I think it is likely the baby is too large to engage in her tiny pelvis and that it also has no room to turn around. there's a little time yet for it to turn and she's having treatments to do this, but it just has so little space. Right now it is jammed from her lungs to her bladder and there is just no more space, yet it is growing very rapidly in these last few weeks.) I have a bad feeling that there will be a c-section in the next 2-3 weeks as letting the baby get enormous (it's on track for 8-10 lbs) won't help anything.

Anyway, kind words and the first time I'm called Aunt Jen for REAL made my day. More later.

Sunday, June 20, 2010

Opinions please-what I wrote

This is what I wrote to my sister, with some details changed for anonymity.

All I want to know is if this is somehow unanswerable. To me it is raw and so maybe it isn't the way I see it, which is simply asking for understanding, and again, to me acknowledging that understanding would be helpful.

See what you think, but again, please be gentle. This is so incredibly painful.

Hi. This is very hard to write, but important. Please take it as intended, which is just to tell you "this is how I feel, I hate that I feel that way but it is very hard not to, and it's fair to you to let you know this because I don't want you to see my pain and think it is aimed at you in any way". And it should have been sent a while ago, but it's taken longer to write than I'd hoped.
Dr. Brain says I need to be very upfront with you about something because while I don't ever intend to show this it may sometimes be impossible to hide. Basically, I'm just sad right now in some ways that might be a little hard to just guess at. I'm so excited about the baby and can't wait to meet him/her, but well, I guess the best way to show this is to say that last Friday evening I watched a movie and a baby was born and I cried for about 2 hours. This is an intense reminder that some of my dreams aren't ever going to come true, and that hurts.
I don't know any way to say this that makes it not sound horrible, but it can be very hard for me to watch your life. We both grew up in the same environment and both of us lived through some really bad things. We have the same gene pool and the same high odds for getting bipolar. But I got sick and you didn't. And because of my illness there are a lot of things I'd hoped for in life that I won't have. Even when I'm doing the best I ever do and am able to act "normal" illness affects every part of my life. I'm so thankful that you and brother beat the genetic odds. Even though I hate parts of my life I also believe that things happen for a reason, as part of a grander scheme, and it's not like I wish that one of you had gotten this instead. I just wish it weren't part of any life, and I wish that I did not have it. And it's harder with you than with brother because you and I grew up together and went through things he didn't, and because your life looks so much like I used to think mine would be.
If I was asked before I was diagnosed where I wanted to be as I approached 35 years old I would have said "I will be married and have children, have or be working on my PhD in gerontology, and be enjoying working as an OT." Of those goals I meet "I enjoy working as an OT". Which is a sad thing since work isn't the thing that should be first, much less often only. As recently as grad school 2nd year I had to fight tooth and nail to be allowed to write a real thesis instead of just a research paper. I needed the thesis as a foundation for a PhD; that's how sure I was that I wanted to go that route. And instead by the time I started my thesis i was rapidly decompensating.
I know your life isn't perfect, but sometimes it feels like you just got to have so much of what I want (which would be because I wanted some very typical things). This isn't saying my life now is awful; it's not. However, it's very far from normal and never will be normal, and there are many things I've wanted that I've had to set aside and go on without doing/having. I am so very, very fortunate. I function so far above where I should be able to and I have wonderful people working to keep me doing well. But having to have a team of people who work together and intensely to keep you able to get dressed and go to work every day is not exactly what you spend your childhood dreaming of, nor do you ever expect that it would be that way.
So over the next month if you see me looking sad or I sound sad or stressed or whatever, please don't take it personally. I know that we veer to totally different extremes in believing in God, but it is God these feelings are directed at. It's just that you kind of are a catalyst. I'm working hard on something I have to go back to over and over again, accepting that my life isn't like I hoped and that instead I have to be thankful for very simple things. I don't know how to explain any better, just that it is hard sometimes to stay focused on being glad that I can work when seemingly everyone else gets to take that for granted.
If you ever doubt how I really feel, please take a look at what you'll see soon, the many, many hours I've spent making things for this baby because doing so and having some small part in it's life that way makes me happy, even a huge amount of what I've made for you is going to generally be covered in waste products (although given what I do that sounds about right). The sewing is good for me, but being able to show love to the baby and to you by doing something like that is much more important, and I hope you can see that is as my true feelings, even if sometimes my face says otherwise.
Again, it's not your problem. I just want you to be fully aware because I don't want to inadvertently hurt you. I don't want you to think this is about you or the baby or anything else. It's just me having a hard time that I'm working on, but I can't snap my fingers and make it stop. I wish.....
I really hope you understand and that I've not hurt you. If you have read this and feel hurt, please, please give me a chance to explain before you feel that way because it probably means I've said something wrong. This has been incredibly hard, and very tearful, to write, and I've tried to be careful, but I'm not always the best judge when crying. I do need thought shut up and give the cats proper attention, per them, and try to make up for only a few hours of sleep last
night between my mother's dog and a storm and mom getting home.
Just Me

Saturday, June 19, 2010

Too much hurt

Today was hard enough that I cried, quite a bit, by the end and I'm not done yet. I may be calling for an extra appt. with Dr. Mind for early in the week if I don't feel better by tomorrow afternoon.

It was my sister's baby shower. The whole day just didn't flow. I was up at 5 and sewing and washing things and putting together gifts until I left at 10:45. I'd hoped to be at my mom's by 10:30 but it just wasn't happening. My sewing machine went on the fritz and took a while to get to work right again, I was doing multiple things at once which I do not excel at, and I'm tired.

So I rode down with a friend of the family. He is someone I have a complicated relationship with; sometimes I love him, sometimes I hate him. He can be way over the top and very difficult to deal with. He also can be incredibly fun and caring, and he's been part of my life for a very long time now. He also can be very self-focused and not very sensitive to my noise issues. He also doesn't listen when he thinks he knows better. He decided to try out a new navigation system on his car that wanted to send us on horrible backroads. I work on those roads, I know them well. He did not actually take those roads, but also refused to take a shortcut through the town I work in (ie I know my way around very well and how to save 5 minutes or more) because it wasn't on his list. He had me leave stressed out because he got to my mother's early and then when I got there, still 15 minutes before we had agreed to leave, he acted like I was late and hurried things, practically taking my home health gear and ripping an impermanently applied decoration to a bag I was going to take back home to finish after the shower. And he got me very upset by telling me something about the baby I didn't know and felt very hurt that I wasn't told by someone and then all about how I had really upset my mother by emailing her about an issue with my sister while she was on vacation. So by the time I got there I HAD to be alone. Which was fine since I also had to fix the decorated bag. Therefore I spent my first hour sewing by hand things huge thing and trying to calm down/waiting for Klonopin. Then things were ok for a bit, although my sister almost was avoiding me. Or so it felt since I'm still rather stunned that I wrote out my heart and sent it to her and she ignored it.

She did seem to like her gifts, and even snuggled the blanket I made; she got a lot of blankets and it was easy to see the favorite. It didn't even occur for a minute ask if I made it. It is pretty nice, and I'll post it and a bunch of other stuff soon.

But overall my mother was stressed and annoyed with my sister's difficult personality right now, I was hurt and still upset because I still do not see where my telling her that the weather, which is different than her weather was bad and that this might affect her decision is anything wrong. She told my mother that I didn't think she could make adult decisions. In the meantime apparently there was some whole thing about my brother-in-law wanting to use my mother's broadband that was the real issue, but not one time did I know a word about that. And all I said, truly, was just to know that there were lots of thunderstorms coming and it might be hard to work outside, and as a result we aren't going to have a garden. So I feel terrible about this and so confused as to what I did wrong.

Then afterward I burst into tears just because I'm so tired of wanting my sister to like me and not succeeding. I even sobbed out about the letter I wrote that she she didn't answer. My mother said maybe it was something she didn't know how to answer. I will post it tomorrow for you all to see what you think, but I don't think the appropriate answer is hard "I understand. Things will be ok". Because not saying that means essentially that she does feel something is wrong with me or that she is not going to work to make things ok. My mother also said that she doesn't think it is my bipolar so much as my sister and I have a difficult past . But there is a huge difference: years ago there were 2 of us who were hating each other, more than most sibling issues but we were also in a different situation. Now I desperately want her to like me and keep trying, and all I get is warm and cold and hurt really badly when she picks cold. I think she truly believes I'm out to get her, that I'm an awful person, and that I'm annoying. In the meantime I'm trying to act like things are ok by emailing and taking her to dinner, and trying to be part of her life and mostly she either is short with me or ignores me, but enough of the time to keep me from giving up hope she is normal. I feel like I'm trying to make her like me and frankly I'm sick of it.

But how do I just give up when my mother then tells me she's starting to not want to have our family together at all? She says there are just too many issues. Meaning me since it is ME who has trouble with my sister in law and trouble with my sister, and I don't even UNDERSTAND the trouble with my sister aside from I think I'm being a fool trying to fix it when I don't know what I do wrong and my mother refuses to tell me if I am doing anything because she won't "take sides". So now I am left feeling like my sister hates me and my mother thinks I'm wrecking our family, especially because I'm also upset with the person I came down with. And I'm so very tired and confused and tired of crying about this because I do not get it. I am a pretty blunt person. This has partly to do with my personality, partly probably to do with my profession as I believe in honesty with patients, and partly because my bipolar sometimes doesn't allow for social niceties. I don't believe in refusing to have a real relationship with you SISTER and not explain what is so wrong. I don't believe that if someone tells you something that is clearly very painful to them that you IGNORE it. And I think that it is cruel to not allow people who are going out of their way to show they care to be part of what is going on. Ignoring my "how do you feel? do you need anything?" when it turns out the baby is possibly breach and also probably pretty big which is a bad thing for someone as petite as my sister, that's not nice. I am so tired of not being worthy of knowing what is going on, worthy of coming to see the baby until I reach some point on a priority list where I will be below lots of non-sister people, and I'm realizing that no matter what I want I'm not going to get to have the relationship with this bab y that I want.

And I'm so, so tired of that. I still hurt every day because I lost my little brother's part of my life because of his mother 9 years ago. And now I wont' have a relationship with my niece or nephew that approaches normal because for some reason I am a bad person to my sister and I have no idea why. I'm sure I do things wrong, but I am and have been for so long trying SO HARD and all I've learned is that I can't try hard enough or something, at least not if I will not be told what is wrong.

It's very hard to not feel like everyone hates me............at least my whole family does and I don't get it. I really, really don't.

And at this point I have to stop the crying I've done off and on for hours now and start trying to sleep. Tomorrow I'm essentially going to make myself stay or on the bed so that I rest, so more then, including the letter I wrote because I need to know why it was offensive or whatever.

Friday, June 18, 2010

Only me

Seriously. After hearing the opposum placenta story the other day Dr. Mind told me that I seem to attract bizarre experiences. Well, the last 2 hours of my life count. Or 3 hours, who knows now.

I've been making a salad for the party tomorrow. Funny I'm not sure I'll be eating it since it doesn't sound appealing right now because of my upset tummy, but at least I made something. Before doing that I washed a whole bunch of dishes, mainly my stainless steel water bottle collection. So the salad required a lot of dishes as well, and lots of mess from chopping lots of vegetables. I finally got all that done and moved on to making homemade cat food for my mother's cat who is sick, and also for my own since this is apparently delicious and CHEAP. Essentially it is pureed chicken livers in their own broth, gravy, and some baby food veggies. Except that i can't find the stupid gravy I bought for this. Which meant that I wound up with chicken livers all over my kitchen. I have barely eaten meat in almost a year now, and now I have offal dripping off my stove (don't ask; I miscalculated). SO I got that cleaned up and by then was soaking wet and needing another shower. I apparently smell like liver, judging from my cat's VERY affectionate reaction here. But I'm not done yet, so I cleaned up my mother's friend's gift for my sister, which is used and which I picked up yesterday in the city. That would have been fine had I actually remembered that if you are going to use you shower hose that you have to detach it BEFORE you turn it on. That meant I got soaked. Again. I still have to clean up the aluminum garbage can I'm turning into a diaper pail (at least the outside, I did do the interior and it's never been used so it's really not gross or anything.) And I still need to change my sheets, try to get a bit more food in me, take meds, and wash the baby's presents. Tomorrow I'll have to package them which I've still not totally figured out, and then hopefully I'll be up at my usual super early so I can finish the last few things which my sister can wash. If it weren't for the exposure to my cats I'd just leave things as I know she'll want to wash everything anyway, but things probably have hair and giving cat hair away seems rather gross. I'll also have to sew snaps on bibs in the morning; I just can't do that tonight even though it's easy. Soooooooooooooooooooo tired...........I'm going to be sorry I didn't take Monday off too. Aside from the whole thing where then next week would also involve 25 visits in 3.5 days.

So, I'm now officially a wreck. No doubt that Klonopin will be taken tonight. And tomorrow morning......

Ridiculous family

So I let my mother know I've been sick. She agreed I have to be healthy to be near my sister. I told her I'll bring stuff down in the morning if I'm not able to go so she can take it. She said no, I'd have to bring it down to meet the person I'm supposed to ride with, because I "HAVE" to let the dogs out. Now, I agreed to do this. However, sick is sick and if I'm unwell then maybe the demand is too much??? Of course, this is the same person who convinced me that I'd be fine dog-sitting the day after I was hit the hardest by my lithium toxicity, and that was possibly the scariest night of my life as I vomited up everything I'd eaten in about 2 days, vomited so hard while laying on the bathroom floor that I peed my pants and then was so sick I laid in that for about an hour, so sick that I was sipping measured teaspoons of water every 30 minutes trying to get something down because I know dehydration would make the toxicity worse, and so sick I left messages for both my family doctor and my psychiatrist at 4 AM begging for help. I waited until then because by that point I was fairly sure I wasn't going to die immediately. (Why I didn't go to the emergency room is much like why I didn't think ankle sprain #1 this year was worthwhile until it led to ankle sprain #2, and why I didn't think that either of my 2 prior sprains or my FRACTURE was a big deal either, and why I am a therapist who didn't notice the damage she was doing to her ankle for years, and even when she knew it was injured refused to see the severity until it was shoved in her face with Xrays with angles drawn showing how far off everything in her whole foot was. Until I saw those Xrays I truly thought this was going to heal and I'd get out of the brace.) Plus there wasn't anywhere within an hour of here that had psych capacity and I couldn't go that far. Anyway, that morning my doctor got me in as his first patient, leapfrogging over everyone else in the waiting room and I had bloodwork done stat and waited there to see if I had to be admitted for hydration and monitoring, while he called Dr. Brain. Come to think of it I probably had him pretty scared as I bet that was the first time he'd ever seen lithium toxicity; he'd only been practicing about 9 months. I was a very, very sick girl, and I left with nausea meds, orders to call in for suppositories if those didn't stay down within 2 hours, clear fluids for 24 hours and a follow-up the next day. Yet I proceeded to dogsit, despite the fact that I was hallucinating because a side effect of phenergan not listed as a side effect but a random statement in the drug facts that isn't obvious when the dr. checked is the sentence "may cause hallucinations in those suspectible". Well, meet susceptible. My terrifying night was followed by a terrifying day as I tried to sort out real from not.

So yeah, no matter what, I guess the dogs come first......

(Meet Bitter, Tired,and Frustrated, the Just Me sisters)

Lessons learned

So I'm tired, not feeling well, cranky, running a fever, not eating, and I have what feels like 14 things to do. Of course some of those things don't need to be done and I need to focus on what does need finished, what can wait, what can maybe be done in the morning, and what has to get done (clothes washed, baby gifts washed, food for shower made--which needs to be done soon since I just showered off the germs).

I need to let some things go. It's not like the baby comes tomorrow, and my sister certainly will understand an IOU for the things that are not quite done. I already feel like I didn't accomplish what I wanted though, because I had an idea of how many bibs I could/should make and then during the PTSD/awful last weeks of the last job extravaganza of March through mid-May, then adjusting to my new job (as great as it is it is a big change, including one night away from home most weeks), and having several busy weekends lately and now feeling crummy on the day I took off to finish things interfered. Which is why people with bipolar shouldn't set goals that don't really matter. Bibs, really? The baby won't even need them for months.

So that's lesson one. Be realistic. I don't like that lesson.

Lesson two is one of the many I'm learning as I learn to sew. For those who've come along in the last few months, in November after I left the hospital I was very, very agitated and needed things to do to stay busy. I messed around with a lot of arts and crafty things, then one day decided to pull out my sewing machine. My grandmother taught me to sew as a child and I used to sew some, but then lithium came into my life and gave me tremors and I had to stop and then I never was well enough to care again. And back when I sewed before it wasn't that good; my manias were way too involved for it to be a good thing. But this time I discovered that I learned a LOT from my grandmother, a lot of it from observation standing behind her in a chair while she sewed and watching. I also learned that I'm not too bad at it, actually fairly decent considering I'm basically a beginner. So all winter I sewed a lot, and then I didn't feel like it for a while, and now I'm suddenly trying to hurry. And as we know, hurrying is always bad. It is even more so when you are not experienced at what you are doing.

And so today I've learned a lot. I've learned patience. I've learned why there is a top and a bottom and why you want the nice stitches on top. I've learned "stop and analyze the problem and don't just keep going when what you are doing doesn't work", something Dr. Mind and I have covered about 70 times in the last 4 years and which I still have a long way to go in learning. I've also learned yet again the lesson Dr. Mind taught me in the first weeks I knew him, literally making me memorize it between sessions and then recite it each time for a very long time, and he still says from time to time "and what did we learn at the beginning?": "Do what you can do as you can do it". Which I've tried to exceed today and it has done me no good.

So, lessons learned. At this point I am going to fix the tiny holes in 6 of the 36 washable baby wipes I have made over the last months (another lesson: don't assume you can do anything quickly). And then I am going to wash the baby things that are finished, package my gifts up, make my food contribution (I need to bring something that I know I can safety eat), and go to sleep. Hopefully tomorrow I'll feel better and maybe can finish another bib or a few burp cloths in the morning. If not, there's still time before the baby even comes.

Which will be my mantra as I stay away from the sewing room........


So I sent that email to my sister days ago, which makes it obvious that this baby shower tomorrow isn't the easiest thing for me.

That makes it hard for people to believe that I'm sick......I'm hopefully going to be better by tomorrow, but right now I have a fever and stomach issues. My mom was sick when she came home from vacation last weekend, so I was exposed but we thought she had some kind of water contamination issue. Maybe not so much.

No matter what I have to get stuff to my mom if I can't go, so I'll have to figure out by early morning if I'm ok or if I have to get stuff down there so she can take it. My being sick would screw up some things like getting the cake picked up. Nobody will be impressed; they'll be mad.

I'm not making it up.......I've tried 15 other reasons for being sick but the truth is that fever means germs. And I can hardly ignore it and expose my 9 months pregnant sister.



The news was good compared to my fears, although not great I suppose (I'm happy enough). Basically my sore foot didn't really show us what is wrong. That means I believe that it is tarsal tunnel syndrome which the only treatment for really is pain management. Since I'm much more comfortable with the ongoing pain management and being off my feet and not lifting people anymore except rarely I am not that concerned. I can handle this pain; it was when it was constant and more severe I was worried.

My other ankle needs surgery. However that isn't exactly news. I have known it would eventually for months now, and really have only had about 1 month that I didn't have good reason to think it was imminent. It doesn't take any expertise at all to look at my ankle and see it has a problem; it turns in all the time unless I straighten and hold it or the brace is on. The good things are that it isn't urgent, at this point it is elective, and I need only the least invasive surgery, more repair than reconstruction (I think kind of a cross between them). He is fine with my decision to wait for another sprain or for the pain to increase, which lets me seamlessly change jobs, and after that an acute injury will let me have the treatment without being "pre-existing" as it would be for the first year for short term disability, and if pain makes me decide (which would have to be much worse) then I can wait until next year. It sounds manageable and I'm ok with knowing that is coming eventually. It sounds like the big thing is to do it before I develop really severe arthritis (which he said is easily avoided) or before I rip the ligament that I still have intact or mostly intact. However, being careful, being in the less risky job, and a new brace that will stabilize better without my wearing it out every 2 months should help.

And (this is a huge thank you God) he told me where to get shoes. I have been struggling to find shoes that meet the requirements for my orthotics, yet still meet my requirements of being light (heavy shoes do not help the poor ankle) and easily washable since my shoes get gross. Anyone have a vote on Asics versus New Balance? (Two different stores with 2 different specialities. I may get one pair of each because I need 2 pairs of sneakers anyway although the cost of each pair of approved shoes is enough to make me sick. I've always worn expensive sneakers or oxfords because my knee requires padding and support (and I've been treating the ankle problem I didn't know I had), but now I only wear the very top of most lines because of how the orthotics fit. It's frightening.

I also realized that I feel bad because I haven't had my medicine that keeps my electrolytes balanced in 10 days because I forgot to get the script and I've noticed that I've been peeing gallons the last few days which is what the problem is without the med, so I had it transferred and have taken it and hopefully will get things balanced back out soon.

And I am now going to try to sleep a while. I have so many things to do, but I need the rest if I'm going to survive the baby shower tomorrow. So, rest it is.


I realized last night that I have pretty much weaned off my daytime dose of Klonopin over the last week or two, without realizing it. This is a good thing, although ideally all med changes at this point should be incredibly slow or not at all; because of how long I was unstable my doctor wants no changes in my meds aside from increases if needed or additions for 1-2 years and at that point weaning can start. I am months from the 1 year mark and she'll probably go for 2 because it's me and because I haven't held totally stable through this. The loss of daytime anxiety meds isn't something she'll be upset with, it's good especially if I just don't need it as is apparently true. however, I'm still taking a pretty big dose at night, but last night I got home late and had to finish some paperwork and fell asleep without any meds, something I never, ever do. Today I feel weird-nausea, shaky, just not right. I have been on high dose benzos constantly since last July and have barely ever missed a day because I just don't miss meds, ever. So I suspect that even though klonopin is harder to to get addicted to and I shouldn't theoretically have withdrawl because of it's half-life, I think my body is very unhappy at my error.

Also, I'm off now to find out about foot or ankle surgery, which is not making me feel any better.
I'm going to refuse it at this point unless there is actual damage being done that won't stop without surgery. The reason for this is that first, surgery would mean screwing with my med balance and that's not ideal, and surgery on MAOIs is difficult because of interactions. Second, surgery would really mess up my plans for job transition. So, I don't want it. I also know that surgery would pretty much make me homebound for a good part of recovery and that is far from ideal.

More later......

Wednesday, June 16, 2010

Didn't mean to leave you all hanging

Soyiimama (I'm sorry, I know I'm butchering that) left the following comment:

I've been thinking about you and the outcome of this brave and necessary act. It's truly awesome that you did such a difficult thing, and it just further shows your strength, among other things. Have you heard back from your sister?

I am so sorry for the pain and anxiety you must be feeling.

I haven't really meant to leave you all hanging. Truthfully, I'm hanging. I've had no answer from her whatsoever. I even checked last night to be sure I sent the thing. I did. So apparently we're following our fine family tradition of ignoring what is uncomfortable. Which I guess I can live with; I said what I needed to say and how she reacts is up to her. Either she understands or she doesn't.

This has just been a BUSY week. I am taking Friday off for a follow-up with my podiatrist about my MRIs and to prepare for my sister's baby shower which is Saturday. Since they are in the process of hiring a substitute for me but haven't completed the process yet that's meant that I had to get all my visits done in 3 1/2 days instead of my usual 4 1/2 (although I work 40 hours in those days). I'm probably going to get about 4 hours of vacation time out of the week in total. That's ok though, at least I have the illusion of a day off, even if it's going to be BUSY. I'm sewing every free minute trying to finish things. Some things I totally gave up on until the baby is here or during the last few weeks of waiting in favor of increasing how much I get done of other things.

I'll post some pictures on my other blog in the next few days of what all I've been spending all my time doing. I'm really proud of myself because I made a blanket, binding included which is so soft and cute and not messed up much at all (everything I do still have small errors). The errors on this are hard to find and really have more to do with my machine not being equipped to do what I made it do.

I am also very excited today because I got up the nerve to tell my supervisor that if they are willing to wait out my contractual obligations and hold a position for me during that that I am very interested. She said they are also VERY interested in me, said lots of nice things, and well, basically I have a permanent job awaiting in a few months (I have to do another contract with my agency before I can sign on permanently). And can we say paid holidays? I have NEVER had one of those. In theory I have, but in reality I have always worked the weekend before or after or on the holiday because the treatments had to be covered somehow. Plus 3 weeks of vacation. And I'll get to continue doing what I've fallen totally in love with. This is what I wanted therapy to be, what therapy was for the years I worked in psych and had a lot more leeway. This lets me be an overall healthcare provider instead of constantly having to ask people with much less education to assess what I'm saying, generally with disagreement just because they don't like a therapist telling them what to do. It's very team oriented, but it is also very autonomous. I think I'd reached a point where I no longer could stand physical therapy assistants with less experience than I have telling me how to do my job. Here, pretty much Ot is what I say it is, and that's great. Staying means that I'll always have the benefit of being the OT who developed the program and that's going to mean that I'll be in a seniority position just by default. Which means I'll get to make decisions that make me happy. I'll talk more sometime about how awesome the people I work with are, but for now I need to get to sleep because tomorrow is insanely busy because I have a lot to do and only a short time to do it, and a lot of driving, and I need to get to the City where I see Dr. Mind a few hours early to do some errands. So I want to have all my paperwork from today done by the time I leave in the morning. Which means I really should try to finish out one of the two so I can still sew. I also should shower but I don't want ot stand up anymore. I really am saying all this, but I'm going to be asleep in about 20 minutes I suspect. Too much work and too many emotions.....

So anyway, thanks for asking and thanks for the support. I really am ok. I have been too busy to think a lot about it, and if nothing else sending it made me less emotional for the moment. I might get through the shower without tears.

More Friday probably. I'm sure I'll want to tell you all about my scary ankles......

Monday, June 14, 2010

My fate is sealed

I sent the note to my sister that Dr. Brain told me I needed to write. Basically it just admits to her that while I'm extremely happy for her and excited to be an aunt and that I'm so excited she gets to be a mommy, at the same time it is very hard for me to see her leading a life similar to what I dreamed of and won't have, especially since we went through the same things as kids and have the same gene pool and I was the one who got the raw end of that deal. Not that I wish that a sibling had this, just I wish it didn't exist.

We'll see how she takes it. It totally depends on the hormones. I'm afraid. Very, very afraid......:)

Saturday, June 12, 2010

Wonder if I'll ever run out of things to say?

I have now posted over 1100 times on this blog in the past 4 1/2 years. It doesn't seem possible.

I am feeling better now. I wound up curling up and taking a huge nap. It wasn't what I wanted to do because I had so many things I wanted to do instead today, but I needed the sleep badly. I'm already sleepy again so in a few minutes I'll take meds and head for my bed.

I've really had a fairly productive day. I've gotten the cat to eat at least a little and I have FINALLY finished one of the first sewing projects I started for the baby: I have made 3 dozen re-usable wipes. I thought that this would be a fast, easy project. I never though about turning 36 small squares inside out. Plus, since they are many different colors and patterns (made from scraps) there was a lot of threading and re-threading needles. They aren't perfect but they are practical and will last and most of all they are DONE, and before the baby shower. Now I just have a bunch of bibs to finish off (although she's also getting a note promising bibs as I finish them as I've just not had the time to work on them lately thanks to several factors including the whole not feeling well psychologically most of the last 4 months. I also want to make a very easy blanket (easy like probably done tomorrow). I have a play mat to make too, but it's never going to be done in time for the shower, so I guess the baby gets that for its' birth.

I can't believe how tired I am after a day of doing virtually nothing. I really am ready for bed. I just don't feel like moving enough to get there.

I'm still fed up with my insurance. I want to scream at them "Normal functioning? How do you know normal for me? You've only been my insurer for 11 months! Your so-called records are 3 treatment plans from the psychologist. Do you know that 3 years ago the state of Ohio's department of vocational rehabilitation was encouraging me to go on disability? But I kept working! 4 years ago I was lithium toxic for 6 months, during which time I was having a full-blown mixed episode since I couldn't hold down meds or food, was working 60 hours/week, and had to change therapists when mine left the country. Working means NOTHING about my functional status, and if you knew your research you'd know this is true for many high-functioning rapid cyclers. I even know where that research was done, you jerks. You don't know my history, so you have no way to know that until 2 years ago I was functioning constantly at at mod/severe to plain severely affected level and working through nearly all of that. And since work is practically all I do because I am still fighting with a SEVERE case of bipolar, don't give me that crap about functioning normally, until you go out with friends maybe once per year, do nothing socially for fun, spend every extra penny you make on medical bills, and have trouble even managing to tolerate the stimulation of a grocery store much of the time."

I could keep going. I'm livid because they are telling me that I am incurable and therefore essentially not worth treating and that letting me talk to a psychologist once a week is a HUGE concession I should be grateful for. In reality talking to that psychologist saves them thousands of dollars in hospitalization bills and allows me to keep working so that I can actually have the job that pays them rather than being on medicare, but whatever.

My mood may be a little cranky.........I may have said earlier I think the pet-sitter did a crummy job. Well, I didn't realize exactly how crummy. Let's just say I killed about a thousand teeny little ants and can't get past the feeling they are crawling on me. I also cleaned up a moldy coffee pot, dirty counters, drifts of dog hair, etc. I can't stand my mom coming home to that, so at least it is done.

On the down side when I put away my sewing I found I was wrong. 2 more wipes to go. Oh well. That's about 20 minutes of work and a week ago I had 18 to go, so this isn't too bad. HOpefully I'll wake early tomorrow and have some peaceful sewing time. We'll see since I'm likely to be up at 3 AM when my mom gets in from vacation.

Tomorrow I hvae to go spend more money I don't have on tires. Just 2, but ick. However it can't be put off. HOpefully I can find a good deal on cheap ones; not sense getting anything very good at this point in the car's life.

So the cat ended the day with very little intake, but at least something and she had a happy time because I set her up with this afghan that I got her that is ugly but cuddly and she loves to knead and she must have kneaded that thing for an hour. So she should be tired as well as happy. I know seeing my mom is going ot make her really happy. She definitely has been waiting for that. I don't think she's going to die as soon as I had thought, but I doubt it will be a month. I'm so glad I've had some time to say good-bye today as I own't be here again for a while. Next weekend is my sister's baby shower, so that will be Saturday and Sunday will be sleeping. The next weekend or two will be recovering from 3 busy weekends in a row, something I try to and am supposed to, avoid. Usually I try for one weekend with stuff, one to rest. Didn't work this month.

Time now to sleep. I hope.

Can it only be 1:30?

I can't believe how stressed I am. I am angry with my insurance. Our appeal worked in that I"m allowed weekly visits (previously they said I could have only every other week) , but I also was told that my extra visits during the time I wasd doing badly recently weren't justified because I was functioning as usual, not in crisis, and I am coorperative with care. They are refusing to call a drop off 33% on their own functional scale in a one month period significant or a crisis? I guess they'd prefer I not get appropriate treatment as proven by years of trial and error and instead I should wind up on disability and then they'll think about providing care at the level that the people treating me for years have determined is appropriate? Because not cooperating with care is a good reason to get more visits? In that case wait to see what I can do...........I don't get where they get this. There is clinical documentation on qualitiative scales showing how much worse I was doing. Yes, NOW I am functioning as per usual. Then? Not so much. Unless they consider panic attacks, nightmares, not sleeping, severe and extreme anxiety to be "normal". This means I'm going to owe the counseling center a considerable amount of money, and I prioritize paying them. So great, more money stress.

Then I got to my mother's to finish pet-sitting. I've been through all this worry b/c her cat is very old and has been declining for a while and declining a lot more recently. Well, I left a note with about 15 suggested things to feed her, descriptions of how to give a tablesppon every couple hours, and that she was doing really well with my new concoction. I found out 2 days ago she's barely eaten and has been hiding in the basement. Today's note aid she's had nothing to eat.

I'm really angry because the pet sitter didn't listen. She gave her one food and canned food and none of hte other 15 things that tempt her to eat a little. Nothing else was touched. Well, variety is really, really important for her and no wonder she's not eaten. I got really scared when I got here because the note said she was in the basement. She was upstairs, but I was searching for her body. Then I got her some food and she tasted it and the other cat shoved her away and I couldn't get her to take anything else because she insisted on going outside. She did taste some milk. I don't want her outside because I don't want her to not come back.

My mom is going to be unhappy because the pet sitter had someone else take care of the pets at least once and I know that was not with permission.

I'm unbelievably annoyed at everything. I should have moved myself and my cats here for the week and I bet the cat would be ok (I'm pretty sure she's now going to die) for a while longer, and the dogs would have had better care. This petsitter has worked for both of us for years and always done great. This time she didn't even empty the dishwasher and put her things in it.

Also, I don't feel very good, I think because I'm tired. And nothing sounds good and i need to eat. I have so much sewing to do and I really want a nap. Plus if I nap I'll have trouble sleeping later.


Friday, June 11, 2010

Four weeks down

I can't believe the contrast between how fast the first 4 weeks of this job went compared to the last four weeks of the last job. I can't believe in 2 weeks my contract will be halfway up. I never expected to love this so much.

I already had decided to let them know that if they are willing to wait out my contractual obligations and want me I'd love to stay if we can negotiate a few things. Which I think they will. If nothing else I need to have insurance with a lower deductible, which I am sure they have. I am paying huge amounts on a few student loans and one credit card, trying to pay them totally off in 6 months or less. But the medical bills and co-pays for meds (currently my out of pocket for meds is about $500-700 depending on what 3 month refills are done that month) and I had finally almost gotten my hospital stay under $1000 and got billed $400 for the testing done by the urogynecologist. Plus I'm making payments on orthotics and X-rays of my feet, I have to buy a new ankle brace every 10 weeks or so and now I've have 2 MRIs to pay on. plus I probably owe the counseling center money although we're so confused we don't know how much. I keep getting to the end of bill-pay day, Friday, and having no money left over. I've tried not paying things I don't have to pay to catch up, but that stresses me out because I know I have to get the debt down before taking on a car payment and the medical bills seem endless so the credit and 2 small student loans must go. And I've been paying and extra $60/month on my mortgage and the thing is that I don't want to give that up as it is making my mortgage go way faster and getting me closer to losing my mortgage insurance with is $30/month, and that's really important to get rid of ASAP, and with my medical status paying off my house ASAP is a good thing. But I also have things I want to save for and I can't do that until I have a new car. I'm more and more aware of the car thing as I'm putting around 1000 miles on per week and that means I'll by over 200,000 by December, plus doing home health in a compact care in Appalachia in winter is not recommended. The parking lot where I work is so funny because it is like small SUV heaven as you actually NEED one to do this. I've already had one place I had trouble getting into with my little car.

So regardless of the wild freaking out about medical bills that I don't seem to ever make progress on, I've made it 4 weeks in this new job and I'm happy and doing well and nobody has told me I suck and they are SUPPORTIVE that I'm establishing something new and working very hard because of that. It's pretty nice. It's also so wonderful to not have everything be about meeting minutes. Now I can give what the patient needs, within reason. Which feels a lot better than running around either trying to stretch 30 minutes tolerance into 70 minutes or 70 minutes of work into 30.

And I'm getting sleepy so I guess my meds actually did decide to wrk when taken early (doesn't always happen.) So, good evening (it's not even dark so night is a stretch). Tomorrow is a major sewing day. I'll write when I come up to stretch.

Thursday, June 10, 2010

So much for "at least"

Last night when I was writing about my motel frustrations (which I knew before I started this I would have, by the way; there is a difficulty when you live on my schedule and stay in a motel. It is called "what the heck do you do when you are awake at 4:30 AM and have none of the things you usually do in that time?". That's my sewing time, my cleaning time, my cuddle the kitties time, etc. I do most of my internet reading and blogging at night and because I'm still waiting for meds to wear off at that time I can do things but I am not the best at thinking, typing, etc. So that time is a bit hard, although today I actually slept until 6. If I can continue that it's not so bad.)

But anyway, my thought through all that yesterday was "well, at least it is clean". And then my feet got cold so I got out my socks for today and wore them to sleep in. I walked around in them of course and oh my. We're crossing clean off the list and adding Clorox wipes to my bag because I am touching NOTHING I've not sanitized. The best way to describe it is this: I have 2 cats. Until 2 months ago I couldn't vacuum for 8 years so it only got done every couple months sometimes. And my socks NEVER got that dirty and you know my floors were filthy. So now we're down to "it's cheap, it's accessible, it looks nice, it has a microwave/fridge (that's the only reason I'm staying, it it close to work, it has good breakfast (although who knows how icky the food prep area is and it's only once per week".

I thought that the lack of vacuuming there was just a missed spot the night I got stuck in the smoking room, where you can have pets. There was quite a bit of kitty litter on the floor there. I figured that was just an accident.

Guess not. Oh well. Makes me appreciate home. (Although as I'm running around here with a vacuum my poor cats who are scared of it keep looking at me like "um, we ALL hate that here, remember? WHAT ARE YOU DOING???")


I had MRIs of both of my ankles/feet today. I am horrified that I'm being charged for 2 MRIs. That's can't be cheap.

I knew I'd have a hard time being still for the MRIs. I knew the noise might bug me. SO I took some extra klonopin.

I was not prepared though to be freaked out because I felt tied down. It wasn't claustrophobia, only my foot was contained, it was PTSD. Again. My partner in life these days.

I also was prepared for what was pictured, this nice chair thing with lots of pillows that let you read. Granted, the tech I had was very unfriendly and probably could have gotten me comfortable, but instead I was left laying on my back holding a book over my head with one arm and the other arm behind my head to serve as a pillow.

I'm not going to say much about the experience because my interactions with the tech and her impatience with my saying having my ankle shoved into the exact position I've spent seven months being forced out of hurt, or her refusal to understand I can't say one thing hurts more as my ankle hurts only sometimes yet is severely injured and my foot hurts most of the time but is just (hopefully) inflamed. Or that she seemed angry that I wiggled during one picture. I wanted to shove her into some position that is painful for her (bending my good ankle in for the 45 minutes required would be fine. It's the stretching the torn ligaments in the other ankle that hurt and she didn't understand that, making her very odd to be doing what she does). My wiggle was a muscle spasm, and I didn't move at all during the time she had my other heel pressed so hard into something that it bruised.

Nonetheless I'm sleepy from my meds and yet I'm irritated. I hate healthcare people who don't introduce themselves. IT's a huge pet peeve, and then triggering PTSD which of course she didn't know happened makes me even less patient.

And now I need to go into my still wet basement and get my sheets in the dryer before I fall asleep without them. I ams oooooooooooo tired.........

Wednesday, June 09, 2010

THe reason I'm eating pancakes with my fingers

Betcha that title's never been used before........

Today was long. As was yesterday. I've got to find a way to lessen my load some. I've got time scheduled to work on that Monday, but for the moment I"m worn out; I've had a lot of hours the last 2 days. Thankfully tomorrow I HAVE to be done early because I have my MRI of my ankles/feet and have a 2 hour drive to get there.

But today was long. One of my patients makes me really sad, her situation is rotten and she's grieving and I totally understand that but she is also chain smoking, and YUCK. Another one of my patients can't see very well. There's this whole backstory about her family not wanting her to use her walker (which she severely needs) because it might scratch the floor. Which is funny since as we were walking back to the place we were talking I noticed a huge puddle on the floor, which she casually said was from the dog, which apparently pees on the floor in anger when it's owner leaves. My patient can't see it so she just walks through it. So now I have to thank God for the insight to pack disinfectant in my suitcase.

After hours of working I went to the Walmart here to buy a new GPS. I got ripped off for starters, since the price the website claims for the store to have was $31 off. But my GPS only says every other syllable and I get lost without it and I didn't have the energy to drive elsewhere to get another one, so whatever. But that store is being remodeled and so you can't just pay for the stupid thing, they have to escort you to the front and you have to check out. I could have had them hold it and gone back, but then I would have had to find the girl, wait for her to be done with other people, then pay. So I paid, then came back in and got food for supper. I forgot utensils but figured they'd have a spoon in the room with the coffee pot, or I could get it from the breakfast area downstairs. Instead I got here and i got mad.

This hotel is nice. It really is. HOwever the girl who works Wed. nights is not and she hates me. This is because the first night I stayed here they had made the reservations on the wrong day and I refused to say it was my fault. I read them a list of Wed. dates so it would be difficult for me to have been wrong there. That first night they stuck me in a smoking room, I think for being "difficult". Since then, every time I stay I have to go through reminding them of my negotiated rate, even when I tell them when I make the reservation. Tonight when I got here she was gabbing away on her cell and eating junk food and I had to wait for about 5 minutes to get her to check me in. Then I brought up load one, things I had to sort through for work, and went back down and moved my car and brought up my other bags. Which are heavy. I look like I'm carrying a ridiculous amount for one night, but this isn't one night. THis is I have packed a lot of stuff so I don't have to repack toiletries all the time, and I get cold so I have to have warm pajamas b/c the rooms are freezing and don't have what I would call a blanket, more of a fancy top sheet (reminder that b/c of sensory issues I sleep with a 22 lb blanket made of 2 layers of heavy fleecy stuff, a down blanket, and often a down comforter even in summer. I remember being taught in school that if you really need the weighted blanket the warmth wouldn't bother you. THat was not a lie.

So I get my stuff up here and all I want is a shower to get the dog pee and cigarrette smoke off. And the key won't work. So I called on my cell, expecting her to come fix it. She made me drag all 30 lbs (I have a travel weighted blanket plus sewing stuff and books because I am awake 4 hours before I have a place to go so I need to keep busy in the mornings) of crap back downstairs then back up. Which is when I realized I had no utensils. So, finger pancakes. They weren't good anyway. I just have had this weird pancake thing lately. It was one of the first normal foods I really liked and have eaten a bunch of them, which is odd since normally I don't like them. Whatever. I'm now moving on to PMS food. Which hopefully will let me un-grouch enough to not want to rip her head off.

(REally, I'm just very tired, I'm also in the midst of another round of PTSD and kind of having to handle it alone because Dr. Mind is away, and I'm stressed because I don't know how they are going to feel about my having overtime this week and I probably will. Considering that I'm still am not fast enough to totally do my documentation during the day and so spend a lot of time off the clock working as well as on I think that's fair, and I really think they'll be fine because I've done a momentous amount of work in the last 2 weeks, but still I hate to have to bring this up). So now it's onto chocolate. Lots of it I hope..............and then sleep, if I"m lucky. That's what I need the most, given my crankiness, which come on, dog pee????????????????? And I have to write that up as a safety issue.

Anyway, tomorrow I'll either have totally jangled nerves after 3 hours of sitting with my feet in tubes or I'll have had a really good nap. I'm planning on some extra sedation so hopefully it will be the really good nap thing. We'll she what wins, meds or I hate noise.:)

At least it beats dog pee............

Monday, June 07, 2010

Opinions from the wise ones

My sister's baby shower is in 2 weeks. Initially I took the day off before to help set-up. I am not going to do this now as it is better for my mental health. I wanted to have time with her when it wasn't 10000 people deep, but if she hurts me and I'm stuck for 2 days I will be in a bad place.

So, here's my issue. Essentially it is fashion/vanity.

I've lived for many years with a hidden disability. I'm used to that. I've also lived all my life answering birthmark questions and so am better aquainted than most with how many people will ask questions if something is "wrong" with you.

I have to wear my ankle brace to the shower. It's outdoors and I'm not allowed to walk outdoors without it, and the risk is too great to chance it. I am not good at complying with plenty of things, but I will never have trouble complying with that because I do not want ankle reconstruction. It is not fun surgery and I've seen people recovering from enough types of surgeries to have a decent idea.

The shower is pretty casual and normally I'd wear shorts, a blouse, and sandals. Except that I really am not supposed to wear sandals as I'm best off with orthotics in and am likely to have pain if I don't have them. Plus the only sandals I have are off limits because of a slight heel.

But if I wear this and sneakers and my brace I'll have to answer brace questions. Even though I've had a brace on that ankle for 7 months now and it is visible with long pants on enough that I've had plenty of questions, I am very self-conscious with it and shorts. I heard a kid asking a parent what it was in a polite whisper the other day and even that made me self-conscious. I have no idea why; compared to my birthmark it's nothing and a 2 word explanation works.

I thought about a sundress and some kind of sandal/shoe thing, but I'd want a long dress to hide the brace and that's not a style right now. Plus I hate dresses.

I can't wear long pants because I'll get overheated, and I can't wear capris because they look really funny on me. I've even though of wearing 2 socks, one over the brace, but I'd wind up looking like a 1980s boys basketball player with those knee sock things; the socks I have to wear under (and would also need over) the brace are tall and the brace doesn't fold down.

So, what do I wear that takes away the attention from the brace? (Keep in mind I have a sister-in-law who is bound to lecture me on the problems caused by the decreased mobility of the brace, even though I'm a therapist who knows plenty about this, wear the brace after my Harvard-trained podiatrist carefully assessed the risks of injury versus weakness, and that without the brace it's a matter of WHEN do I fall and completely tear whatever structures are damaged in there--which I finally will know next Friday as I'm having an MRI this week).

All idea appreciated.

Saturday, June 05, 2010

Raw honesty

Like last night wasn't enough. This post is supposed to be about what the last sentence will say, but that is just no longer the most important thing right now. I have officially had the day from HELL

I'm dogsitting my mom's dogs this weekend. That's no problem. The fun started when I went to let the dogs out for their second run in their fenced yard and found there was an opposum on the deck with babies clinging to it. I watched as it slowly waddled off. A couple hours later the dogs wanted out and I forgot so took them to the sun porch. They saw it and went nuts. I drug them back inside and got htem more or less calm. Until we had a storm and I interpreted the early warning signs from the one scared of storms as a desire to kill baby possums. So I got all scratched up and then her sedative didn't kick in until after the storm was half over. That was when the cat who isn't nearing the end of a very long life requiring meds and constant feeding and different things to tempt her peed all over the canvas thing I use normally to store fabric and had brought down with my sewing machine and the things for 2 expensive baby blankets in it. He's been acting out a lot because of jealousy of the attention giving the dying slowly cat. I'm just giving him as much food as I give her when he's around trying to bribe him. Thankfully it was waterproofed but I have no idea if it is ruined yet; I haven't felt like smelling. with my sister that made me cry but still makes no sense to me. She was being touchy. I have been over and over the conversations and nothing I said was wrong in any way. But it made me cry. So then I was running late for my appt. with Dr. Brain (late by my I wanted to leave early standard, not late for real, but I had errands to do that I wanted to start first).

Dr. Brain was behind, as per usual, so I actually got a whole eval finished which was great. I met with Dr. Brain a long time and we talked about how I have just had my PTSD flare back up, which is why I'm falling apart the last couple days. I did a good amount of crying with her. I also found out there just isn't an allergy med that works for me that I can take, and that I am to continue taking lots of anxiety meds and not worry about getting off. She was able to offer some good news about a new program that might help me not have to pay $330/month for Nuvigil. And I for sure can have a new coupon for 1 free month of it. Which is very good. But she can't take away the pain of what I'm going through anymore than anyone else can, nor can she make the PTSD go away. I have to deal with it and get used to the idea that right now it may not just be "done" like an arthritic flare-up, it may be something I'm living with for a while. I really have been dealing it at some level since the hospital in October, so that makes sense. Dr. Mind is my best hope with handling this PTSD thing and it's going to take time.

So I left and went to my usual favorite place to treat myself to a late lunch after these appts. It was 2:54 and the sign said they close at 3 on Saturdays in the summer. But they refused to serve me "we're closed". I pointed out about 5 times that the door was open and it was NOT 3 but they apparently had decided that 3 means 2:45. So no good special lunch.

Then I ran a bunch of errands that all took longer than I wanted. I also talked to the during the week petsitter Gypsy doesn't get better. She ate better tonight so hopefully the meds are working, but she's just very very old. I had to realize that if she starts to die I'm going to probably have to decide to put her to sleep simply because I can't expect the pet sitter to go through that. And I'd then lie to my mom until she came home. Somewhere in there the realization that I hadn't given my cats the usual extra food I put out if I'm going to be away for 36 hours like today because I was in such a rush yesterday morning. So by the time I got back here the dogs had been in the basement way too long. I checked for the possum and it was gone, so I let them out. THey had a great time trying to track it and barking at it. No big deal, I let them work out steam and fed the sick cat and got into my pajamas and started writing about what Dr. Brain says I need to do. When I let them in one of them was FILTHY. She didn't have a clean spot on her.

So I searched everywhere for dog shampoo. No luck. She got a bath in palmolive. IT was a huge ordeal beause I couldn't remember where my mom hooks up the hose in teh basement so I poured the cups of water over her for 3 gallons of water. I then had to strip and wash everything I had on including my very expensive new sneakers that I don't even know if they are washable. GUess I'll know soon. I then scrubbed myself. I Felt so incredibly filthy that I even scrubbed my face with soap, a really bad idea for my very sensitive skin. I think I washed about 4 times before the hot water ran out from the washer plus all that water on teh dog.

Oh, and there was also my horrible goof. 2 years ago I designed and bought a special bracelet for my mom, modeled after the idea of a mother's ring but prettier than our stones could be and with meaningful charms on it as well. It had a tricky clasp and I'd decided to get that replaced as a surprise while she was gone. Well, that and $20 fell out of my pocket somewhere. I found the etsy vendor who made it and she's making a new one, but I'm still horrified.

So I finally got meds and supper about 11 and and actually getting a little sleepy. Which is good because tomorrow I have to do the thing that the title of this post was supposed to be about; I have to tell myself specifically how hard this is. I've done so once, but Dr. Brain says I need to again, very clearly. That lets me be emotional and hopefully cut down on the getting hurt by her insensitivity/tendency to attack me whenever she's stressed (lifelong habit).

And this has worn me out so I guess I'm actually going to get to sleep. I wasn't so sure that would happen tonight.

Tomorrow surely has to be better...........