Huh?

Sometimes we healthcare professionals are pretty darn dense. Today I discovered one of those times.

I was working with a patient who has had a stroke and is in the final countdown to leaving. She asked me to see what was in a binder the hospital rehab had given her before she left that she never bothered to check out since we were keeping her quite busy.

It was a nice binder with different sections for each set of professionals who had worked with her and a bunch of info about strokes. The therapists included exercises, pharmacy included her meds, etc. But there was one very odd section.

The vast majority of this patient's binder was about...breast self-exams. 27 pages of it, in fact. Why? No clue. She had breast cancer a long time ago, but she does her exams and sees her dr regularly. So why someone decided that immediately after a serious stroke the most immediate need was breast exams is beyond me.

Next we'll treat colds with muscle stretching. It seems as related.

Faith is all I really have

Ever since I wrote this post, I've thought a lot about faith and illness. Faith has been so confusing to me over these last years since I got really sick. I don't think I ever thought my faith had gone away, but faith as I knew it certainly did.

Until I got sick I didn't really understand grace. I thought that being a Christian meant certain rules had to be followed. You had to read the Bible, pray, do good works, and behave in a "Christian" manner. You never, ever would swear, think impure thoughts, or act in any way but that prescribed by a lot of people with very limited thinking. This view was increased when I chose a strict conservative Christian school for college.

Until college I had gone to church and Sunday school every week with my grandparents and later alone. It was totally part of my routine. When I went to college I discovered that I was having trouble with the loud and contemporary services designed to attract students. I also had 16 chapel cards that had to be turned in each semester, and I quickly realized that since I worked on the day of one chapel service that Sunday night services were a good idea for me. I did that for several years, but by then any noisy area was starting to bug me, including a more crowded chapel (and I wasn't working Thursday breakfast anymore). So I did what most of the other students did and got my chapel cards turned in by going to the short services, arriving late to avoid the singing beforehand.

Through college and until some time I can't remember I made a huge point of reading the Bible every day. In college I would take it to hidden places in the chapel to read in peace and pray. Somewhere along the path to illness I lost the ability to follow the Bible well. Of everything I have lost, this is what I miss and hate the most. I feel ashamed by this, even though I know it's not my choice. I have a Bible written for young children, but I resent needing to follow this.

I also miss church. There are so many factors involved with church: noise, socialization, trust, fear of being judged, crowds, etc. that I'm taking it on an I'll know when I'm ready basis.

For so long I was so very confused. I basically lost knowing what grace is. Because other people and myself had believed that what I was doing was totally because I was living wrong, I felt enormous guilt. I wasn't sure if I even qualified to say I was a Christian because I lived so far from the beaten path of Christianity.

Then about 9 months ago I figured out what fixed what I had lost: grace. Finally there was some resolution of the issue of how much did God hate me for not being what I was supposed to? And the answer was "not at all". I forgot, for so long, that a relationship with God means that I'm supposed to ask for forgiveness, bring my life before Him, and it would then be as He ordains. He knows why I don't do the things the average Christian does and because He understands my illness He forgives me. The only ones to judge are human, and they have no power over me.

So, that's what I have lost, and what I'm working on finding again. Ever so slowly I'm learning that God knows when my actions are prompted by illness and that since God knew long before I was around that I would have this illness, He is willing to forgive me and keep helping me to grow. The changes show every day.

The "benefits" of hyperacuity

This is a post I'm emailing in, so I can't do much with formatting and you'll probably have to follow a link by cutting and pasting instead of the fancy way.  But I thought this was interesting. 
http://cosmos.bcst.yahoo.com/up/player/popup/index.php?cl=13142607
 
It's a brief video about a tone that teenagers can hear but most adults over 25 cannot due to normal gradual hearing loss with aging.  It's being used as a ringtone that teens use during school so teachers don't know they are texting.  It's also used as a "teen deterrant" to keep teens from congregating in public places.  The noise is high-pitched and described as "painful" by the teens.
 
I'm way over 25 and I can hear it quite clearly, even when it's turned down in volume.  It leaves a ringing in my ears and in fact I'm deterred.  I'd call it highly annoying.  I'm willing to bet that this is in large part due to my avoidance of music, tv, movie theaters, and crowds over the last 10 years. 
 
So, there is actually a health benefit to bipolar:  I can hear obnoxious noises!  (or, I guess, I find so many noises obnoxious because I hear really well, not just because I'm hyperaware of what I hear).  Who knows. 

Thinking: Bipolar is a lot of responsibility

This may sound like a scary post, and it's not meant to be. I'm totally safe, and not actually considering munching on handfuls of pills. This is more intended to be about how absurd life can be with bipolar.

Along with other meds I take a relatively small dose of a tricyclic antidepressant, imipramine (Trofanil). It's actually the oldest of the tricyclics and considered the gold-standard of antidepressants. (Gold standards are my favorite meds; they say the same about lithium). Tricyclics have more side effects that SSRIs and other newer drugs, but I blew through all other options many years ago. SSRIs make me extremely manic, Wellbutrin makes me manic AND sick, Remeron worked for a long time then sent my blood pressure sky-rocketing, Effexor only worked a few weeks, etc. I've been on nearly everything. This was a last shot that happened to work.

At the dose I take there really aren't side effects. My doctor thinks I have some urine retention which explains my frequent UTIs, I have to play with the dose to get it right between manic and depressed, it makes me constipated (as does everything), but mainly it's not a drug I am bothered much by.

I knew tricyclics were potentially lethal drugs in an overdose. For the years I was sickest I only got them in monthly supplies. But I haven't had a suicidal episode in years, so I'm now allowed to get them from mail-order, with the caveat that if I start feeling I have too many I give them away to be doled out in smaller numbers. No big deal. Even if I were suicidal, having survived lithium toxicity I wouldn't turn to meds. I don't ever want to feel like that again, and even the RISK that I could not kill myself and make myself sick is enough to deter those thoughts.

But recently I took a CEU course that discussed how lethal tricyclics are. And now I'm scared. I don't know why. I take 7 of them every night, and no more. I have no desire to take more. I'm used to having lethal doses of lithium laying around. But the fact that I could kill myself and probably half my town with the contents of that bottle (or that bottle plus the lithium bottle) just amazes me.

It just is weird.

Really good news and really annoying news

The really good news is that I got to cut my Depakote a little bit more. I'm now down from 3000 mg to 1750 mg. I am adding an ativan because I'm having more anxiety and less mood issues right now. We'll see how it goes, I'm just glad to try.

The other really good news is that I'm officially doing well with work and will not be getting fired. It's the first time work has been a stable thing in YEARS.

The third good news is that I'm making taco soup, which I love. Since I've been losing all this weight I'm accumulating a lot of good and healthy recipes, and I plan to start posting some of them soon. However, first I have to work out the bad thing......

I saw the nephrologist (kidney doctor) about my diabetes insipidus this week. I left totally confused. For one thing, somehow I no longer have DI. I have a precursor. But if that's true, he's only looking at my medicated labs, as I know he agreed I had it based on my pre-treatment labs and that he had me start treatment before he saw me last year. For another, he told me I have hyperkalemia (high potassium). This is not really something you want, as if it gets bad enough it can stop your heart. I am not anywhere near that point, but I was told to watch my diet. He wasn't very specific and I thought I'd have time to ask questions after being given the diet sheet. Instead he moved to the next patient and the nurse gave me the sheet and no chance to ask questions. Which I had in spades, because the list of high potassium foods is the same list of things I have been eating to lose weight. So now I'm a little freaked out because I don't want to re-gain the weight (which then just increases my risk of diabetes, which would harm my kidneys another way), but I don't want to die either.

So I asked Dr. Brain about all this and she asked questions he hadn't, and turns out that if you mix the med I take for my kidneys and NSAIDs you get hyperkalemia. Normally I don't take NSAIDs, but the week I had that lab drawn I had taken them for several days because of the strep pain.

This week I've have to see Dr. Body for a new plan and possibly a new nephrologist as I'm not really happy with this guy. I know I'm probably his healthiest patient, but I still deserve a bit of attention, or release me from services. And he acted like he was clueless. I think he let his medical student do the note and recommendations last year, which is scary since the med student knew NOTHING about DI.

It's been a while since I've had to turn on the big bear advocate-for-yourself part of my personality. I can't wait. Not.

Just Something I Stole

More later on the best psychiatrist visit EVER (plus a not-so-exciting nephrologist visit the other day), but I saw this and thought it was a good way to share random facts, something I enjoy. So please feel free to post your own answers and link back; I'd love to know about you.

1. First thing you wash in the shower? Hair. First with vinegar, then normally.
2. What color is your favorite hoodie? Green
3. Would you kiss the last person you kissed again? Depends on who it was; probably a patient...
4. Do you plan outfits? Ha!
5. How are you feeling RIGHT now? Tired; 5 hours of driving today
6. What's the closest thing to you that's red? A tylenol bottle label
7. What was the last dream you remember having? Lots of nightmares lately from therapy, don't care to share
8. Did you meet anybody new today? The receptionist at my psychiatrist's office? Not really.
9. What are you craving right now? Nothing, but some food will come to mind soon.
10. Do you floss? Not often enough. I gag very easily and flossing is a good way to gag.
11. What comes to mind when I say cabbage? Cabbage rolls. Love 'em.
12. Are you emotional? Um, I'm bipolar. That's emotional on steroids
13. Have you ever counted to 1,000? Yes
14. Do you bite into your ice cream or just lick it?Bite
15. Do you like your hair? Yep. It's...unique
16. Do you like yourself? Sometimes. I'm learning.
17. Would you go out to eat with George W. Bush? I admit that I voted for him, but my mind has changed, so no.
18. What are you listening to right now? Silence
19. Are your parents strict? With the dogs
20. Would you go sky diving? No way, scared of heights. Although I went on a Sky Blaster (can't find pic but it's a bungie chair that shoots you up really high then you head toward earth face down and fast) in Niagara Falls when really manic
21. Do you like cottage cheese? Yes
22. Have you ever met a celebrity? No
23. Do you rent movies often? Never.
24. Is there anything sparkly in the room in which you are? Just my personality?
25. What countries have you visited? Canada
26. Have you made a prank phone call? Nope
27. Ever been on a train? Yes
28. Brown or white eggs? Depends
29. Do you have a cell-phone? Practically mandatory with my commute
31. Do you use chapstick? Not like I should
32. Do you own a gun? Scared of them
33. Can you use chopsticks? No
34. Who are you going to be with tonight? My cats
35. Are you too forgiving? No
36. Ever been in love? No
37. What is your best friend doing tomorrow? I don't use that term anymore
38. Ever have cream puffs? No
39. Last time you cried? Therapy last week
40. What was the last question you asked? Can I reduce my Depakote dose by 1/2 pill?
41. Favorite time of the year? Spring
42. Do you have any tattoos? Nope
43. Are you sarcastic? Just a bit (hahaha)
44. Have you ever seen The Butterfly Effect? Don't even know what it is
45. Ever walked into a wall? Constantly when I have to pee during the night thanks to lithium
46. Favorite color? Green
47. Have you ever slapped someone? Yes.
48. Is your hair curly?Very.
49. What was the last CD you bought? I don't buy CD's.
50. Do looks matter? I hope that I behave in a way that they don't. In my heart, no. But I'm still human.
51. Could you ever forgive a cheater? Forgive, not forget
52. Is your phone bill sky high? No
53. Do you like your life right now? Yes and it keeps getting better
54. Do you sleep with the TV on? No, I rarely turn it on at all, just to watch a movie maybe once every month or two
55. Can you handle the truth? Yes, and I've handled more rough truths than most
56. Do you have good vision? Yes, but I have a problem called strabismus in one eye that means I don't see much from that eye (lazy eye) because it wasn't treated as a child. But my glasses correct it totally and I've never seen differently so if the eye dr didn't tell me I wouldn't know. I do not have good depth perception though, which makes driving on freeways stressful
57. Do you hate or dislike more than 3 people? Hate, no. Dislike, yes.
58. How often do you talk on the phone? Every day a little
59. The last person you held hands with? Some patient
60. What are you wearing? old, too big scrub pants and a t-shirt that totally clashes
61. What is your favorite animal? Cats
62. Where was your profile picture taken? Destin Beach, FL
63. Can you hula hoop? The last time I tried was at least 22 years ago
64. Do you have a job? Thank God, yes
65. What was the most recent thing you bought? A mattress pad
66. Have you ever crawled through a window? I don't remember doing this, but it does sound sort of familiar, maybe in our playhouse as kids

Paranoia should be something everyone experiences once

Yesterday I was feeding a man supper. At the table with us was a woman who sometimes becomes paranoid and/or hallucinates. She was having a REALLY bad day yesterday, and kept hearing voices mixed into the radio.

Usually the radio isn't on at meals, or at least not for this impaired dining group. I turned it off.
As soon as I got back across the room someone snapped at me for not just turning it down. I explained my reasoning and went back to my patient.

After I left and then happened to come back into the room they'd turned it back on and she was sitting there quietly crying and mumbling about why wouldn't the people she could hear come talk to her and what must be wrong with them.

I'm so angry about this. I feel like I overdo it with music anyway; we have music all the time in therapy, but it's soft rock, not music that our patients are likely to like. I even had to tell my staff no more swearing music a while back.

But I only know how wrong they were because I've been there. I think that is the most frustrating thing about not being open with this illness.

Big deal

This is probably only a big deal to me, but to me it is huge. For one thing I've worked incredibly hard to get here. For another this is my record of things and so I'm recording.

I've been trying hard to lose weight. As of this morning I hit 24 lbs. down in 3 months. I also wore pants today that say they are one size smaller than I started but really are the same size as most 2 sizes smaller than I started (ie, I was wearing 20s. These say 18s but didn't fit until 18s were loose, and I remember they were larger than any other pants I had when I was gaining weight). I'm doing this the relatively painless way; some of it is from decreasing my depakote some, and the rest is from switching away from rapidly acting sugars. Mostly. I am doing very well and eat pretty much whatever I want, although I do try to avoid potatoes, white bread, pop, more than bite sized candy (but I eat several of those per day), juice, etc. And it's working!

This is the first time in years I've felt I had control over my body. Bipolar rips away control of how you feel and this is very threatening since "everyone" can handle their mere emotions. And then treatment takes away all sense of controlling your body. I gained 80 lbs in one year from my initial meds. I was an XS scrub size in May and by the following January was a Medium, and a year later a large, and a few years after that an XL. All those clothes are now given away to a pregnant friend.

Last night I was up way past bedtime hardboiling 5 dozen eggs for patient egg-dying day. I'm now going to try to make up for lost sleep.

No title comes to mind

So I'm finding myself a little low on things to say. I'm feeling very cranky and tired. Apparently recovery from what I had takes a lot longer than I would choose. And Dr. Mind closed our rather painful session with the conclusion we've reached a really hard point and I am now going to have to deal with even more abuse damage. Which I knew but didn't care to know, if you know what I mean. I am facing time having to deal with things from my past that I've not even come close to talking about in 11 years or more. And now I'm into stuff that is even harder. It is easier in some ways for me to talk about the sexual abuse I experienced, because I can clinicalize (my new word) this more easily. The abuse in my family I am more ashamed of. And that is where I now have landed.

And then I'm obsessing about what finally makes sense. About 2 months ago I watched Juno. I really liked it, but thought this had a great deal to do with being proud I had watched a grown-up movie for the first time in years. But I kept feeling this compulsion to watch it again and again. I knew I was missing something that was really important to me. This conclusion was easy to reach since every time at the same part I would start sobbing, sometimes hard enough to have watching. And not watching wasn't helping this to go away either; I kept thinking about it. Finally I watched the movie until I got it. I even watched the gag reels, screen tests, etc. There is not one second of that DVD I haven't seen, most several times. I know the music, the words of whole scenes, etc. I've never done this with a movie before.

The problem comes from one simple line, the last line of the movie before some music, I believe. (Why I don't obsess about a line I can actually find without 400 viewings is another story). The line is (paraphrased) that you aren't supposed to have a baby then fall in love, but the 2 teenage parents/main characters are just different.

My sobbing has been my anger at this simple statement. Lots of people have the less common scenario. I just feel angry sometimes because I have done what I believe is right within my belief system and I'll never have a child and I very well may never even have a relationship. I don't know what is wrong with me there, but I need to get past it. Sometimes it seems like as I adjust to wellness that there are things I have known for many years that have to sink in all over again.

Finally, I like what Therapy Doc has to say here. I can't the link to fully work, so scroll down for the post called "Nobody Said It Was Easy ". I think what she's talking about it pretty much what I'm doing right now with therapy, and if you watch the video and listen to the words together (I didn't at first and didn't get it) that's kind of what I have to do: go back through things from long ago and try to re-construct them with a better outcome.

So, if I'm quiet blame it on the stress. Or on my not caring to spread my grouchiness with you. It's because I care.