One moment

For a glorious moment I thought that I had found my way around the income level for my beloved patch.  Then I found out I was wrong.

I am so tired that I'm numb.  After essentially no sleep I saw Dr. Mind and then drove another hour to get blood drawn.  Somehow the order wasn't in the computer so I spent a long time waiting for new orders.  They finally drew the blood and I got the things I needed and then drove home in rain and fog.  Fog isn't a typical January experience here; it was weird.  The trip was in rush hour but didn't take any longer, which was fabulous.  Still, I am worn out and eating popcorn for supper.  I don't want it either but I have to eat something so I'm trying.  I hope I sleep after all that.

Lessons

This week has been truly tough.  I haven't slept, I'm exhausted, I've been struggling very hard with not liking what my role in life right now is, and my mood has just been everywhere.  I've written a ton and out poured many things I didn't realize I was battling.  Last week I cried a lot with Dr. Mind while we discussed how hard it is to be dependent on other people's generosity along with various government programs, and yet that it was even harder that I am so close to getting more help I really could use but am barely over the line and once you cross it no exceptions.  I make about $175/month too much to qualify for a number of programs.  It's really frustrating when I need financial help every single month.  I am embarrassed by the programs I do use though and that I wish for more assistance.  It is hard to accept that in a world where people are so fast to judge anyone who is helped by any program.  I've not learned to accept this gracefully and I've been helped along in this by all that I have to listen to about people like me who leech out of society.  That's not even true, for the most part I'm living on SSDI which is insurance that I paid into for all the years I worked, starting with my first job at age 14 when I probably paid in $.18.  But regardless it really upsets me.  And as it gets closer to June I am forced to see that my secret dream that I'd be so much better and would be starting to cram in all my continuing education isn't going to happen.  I cry whenever I say this, but in June my OT license goes into escrow.  In 2 more years my national certification will go into retired, good standing.  And the year after that my state license will retire.  I know that I cannot work as an OT anymore.  I used to think I could take on 1 or 2 patients per week, restrict my involvement to evaluations only, but the reality is that after some thought I realized I can't.  It's not in me to "just" evaluate.  If I evaluated I would also do a thorough medical assessment and I'd feel that I needed to follow-through on that like I should along with any OT needs, and it would snowball and I'd be overdoing it, again.  OT is kind of an addiction for me.  It's not safe.  And I know that is true because all my doctors, including the psychiatrist I see in the hospital, have told me so.  When this discussion ended last week Dr. Mind reminded me of the part of James where we are ordered to care for the widowed and orphaned.  Again.  And again I only thought rebellious thoughts and sobbed harder.

Last night I finally slept.  Whenever I'm mixed and don't sleep much for enough days I'll crash.  This time it took 3 or 4 weeks I think. I don't really remember.  I had a few nights that Neurontin helped but then it didn't and I want to talk to Dr. Brain about a few questions before the dose is increased.  (I know that 300 mg caused me major problems before.  I'll need sedation in the hospital.  I don't care if I can't walk well in the hospital but until then I can't go to 300 and I don't want to have the dose where the hospital increases to 600 mg because at that point I am plain old confused.

I'd hoped that meant I'd get more sleep tonight.  Sometimes that one night breaks the cycle at least a little.  Not so lucky.  But that led to my reading a blog and not realizing that time had passed and I should be reading a book.  And because I read that blog I finally got a little peace.  Not enough that Dr. Mind isn't going to hear a lot more about my expectations versus my life.  (I thought that if I didn't work I'd just live a more relaxed life.  Like weekends when I felt good, all the time.  That is not true.  My life is completely determined by my mood and medications and sleep.  I have things that are meaningful to me and that I matter at, but they aren't things I get a lot of.

Anyway, the blog is called Wrong in All the Right Ways.  I've actually read it before from the beginning as I am now because it is an amazing journey and the author is quite funny.  I find strength in reading it.  They are a family with 6 children.  Four are adopted.  One does not have special needs.  The next adopted child has no needs now but had to have major skull reconstruction when she was adopted.  The youngest 2 are both about 4, both adopted almost 2 years ago.  One of them, Francesca, has Apert syndrome.  This is a syndrome I actually had known a woman who had been born with it, but I had no idea what it was.  I knew her when I volunteered at a state facility for people with developmental disabilities back in college.  As soon as I saw a picture of the litte girl I knew she had the same disorder as that woman years ago.  It turns out that it was amazing she as alive since the disorder causes the skull to fuse var too young and without major surgeries the brain is compressed badly, which is obviously bad for your brain and is also painful.  If she had pain you'd never know.  I have a picture of her somewhere but I don't remember her name now.  The other little girl, Victoria, has arthrogryposis, which is a disease where joints are contracted (immobile) from birth.  I treated an infant with this during clinicals and  I remember how hard it as because his tight hips prevented so much movement.  His 16 year old mom had a lot to deal with handling therapies, splints, etc.  Both of the younger girls had been severely neglected and were extremely malnourished when they were adopted. In fact they went from the airport to the hospital for emergent treatment of Victoria's malnourishment.  Her condition was horrible because somehow she had been condemned to a "lying room" in the Ukrainian orphanage.  Essentially she was thrown in a crib with no stimulation and left there to die.  At first the parents though she was unable to move her jaw because she never had a facial expression.  Eventually she learned to smile, laugh, eat food and communicate.  Since they have been home both girls have had surgeries (multiple for each) and been in many, many casts.  And both are thriving.  Little Victoria who originally threw her arms over her face to hide it when people were around is possibly the most determined person on earth.  If they said she couldn't do it she has.  Not only does she walk she is now (after figuring it out for herself) managing to push herself up to stand, with enormous effort.  It's truly amazing.

But this time through their blog I noticed a post where the mother had been talking to an old friend who had rather seriously attacked her decision to adopt these children and the unfairness of it to her other children, that it was better to only have biological children because then you could give those children more.  I'd never read the comments on this page, but this time I did.  You can too.  http://wronginalltherightways-travcat.blogspot.com/2012/02/important-question-to-my-readers.html#comment-form  .  And while I read I learned about giving and receiving.  I'm not done being angry and I'm not done being shocked at what my limitations are at this point in time.  But I learned the real meaning of that verse from James that Dr. Mind keeps sharing and I keep pushing away.  So hile it's another night that I'm clearly not getting sleepy, and while tomorrow will be completely exhausting as I have to get a lithium level done after counseling an hour away from there then drive 2 hours home with a stop for water and milk at the only place that carries the brand of water I prefer (and can afford, it's way cheaper and tastes way better, and when you buy 14 gallons of water ever 2 weeks or so that matters a lot).

I am going to read a go to sleep book now and hopefully I'll get to sleep before too long but I'm so thankful for the peace and understanding I found with this.  I love the internet.

Maybe this time I'll get it right

I've been on lithium almost 11 years now.  I've had 2 serious toxicities, the last just over a year ago.  Both times I missed it.  The first time we all did for a long time because it wasn't very typical and was very hard to test.  To get an accurate level you have to have blood drawn 11-13 hours after a dose and have not missed a dose in 4 days.  I couldn't go 4 days then without vomiting so we kept testing but it wasn't accurate. I had ulcers from vomiting so much and that additionally made it confusing. Finally Dr. Mind noticed that I couldn't walk straight and contacted Dr. Brain.  She pulled me off work so I could focus on keeping meds down (I think I had medicine for that) and the day after I had the blood drawn I got the call from a triumphant Dr. Brain that she knew what had been wrong for months.  My level was fairly high but not dangerous so that time it was treated as an outpatient.  Last year I suddenly became agitated and in a couple days as hallucinating.  I called her and since that's very atypical for me she sent me to the ER.  In the ER I kept insisting that I had no symptoms of toxicity.  Then the 3rd time through it when an intern was being taught how to evaluate for toxicity I finally caught on that I was failing neuro testing.  I know what it looks like, I just was so sure it would be normal that I did not pay attention. That time through it I also realized that there had been some other signs I'd ignored for a few weeks.  That time I was very toxic and there were physical things like increased kidney numbers and urine that as practically entirely water (which screws up your electrolytes.  I have a problem from lithium called diabetes insipidus that causes this but it as pretty controlled until the toxicity and Dr. Brain said she'd never seen a urine as dilute as mine.)  And of course there were the hallucinations and apparently I was pretty confused which I didn't know until I as out of the hospital.

Last night I had some digestive issues that happen only when sick (I'm not) or lithium toxic.  When I started putting things together I realized that I've again had several symptoms for a while.  So Monday I'll manipulate med times and then go get it drawn after I see Dr. Mind.  Chances are good that I'm wrong since I have been tested at my request several times before and I've never been right.  For some time after the first toxicity I got toxic every time I got hot or didn't drink enough but it was always just a short spike and then it recovered.  Those I was accurate with but they didn't matter.

I just hope that if I am right I have a reason for various oddities of late.   And if I'm right I hope that I can stay home and avoid the IV.  That was a disaster a year ago.  (The hospital, not the IV).

We shall see.

I finally did it

It has now been 13 months since I came home from the hospital on suicide precautions.  To manage meds the agreement was that I would have a locked box at home with a combination lock.  That box contains things that can't hurt me easily, like vitamins.  It also contains a pill box (2 at this time of year with snow storms) with the daily pills for 1-2 weeks.  I also have a box with a padlock that contains all my dangerous meds.  Dr. Mind has the keys to this box.  Every week we take a 5 minute break so I can fill my boxes.  It's annoying and we were reaching the end of being forced to do this when this whole new medication thing came up and now my history means I will be on close watch until I'm done.  Dr.Brain is being extremely (frustratingly) conservative with this (Dr. Mind would have let me off a couple months ago although he would have re-started with medication changes).  The deal was basically that I would comply and not argue.  And I have, although I have asked to be let out of it a few times.

Anyway at first Dr. Mind carefully monitored to be sure I wasn't taking handfuls of anything.  Eventually he let me do it alone and just made sure I gave him the keys.  I think he also watches that I've lcoked the box but I'm not sure.  Th en the box goes in a backpack and when it is time for me to fill the pill box for the week I pull that pill box out, then add the vitamins and other safe meds.  It's annoying but it is routine now.  I made it to now.  I think I was talking and out of habit locked my meds in the box I can't open.  

I fortunately do not have to make a desperate trip to Dr. Mind's office tomorrow.  I had various times that I miscounted or had a few extra or that I knew would be good to have a couple extras.  I managed to put it together out of my scrap piles but I can't believe I did this.  I knew I would sometime but I assumed it would have been months ago.  Oh no, I paid attention back then.

I knew I'd do this.  Apparently Dr. Mind needs to not just focus on getting the keys away from me and instead needs to make sure I don't safely lock up my week of meds.

OH well.  Life goes on.

i will say this

I really, really don't want to do the hospital thing.  I know that it is going to be necessary unless those patches appear out of nowhere (which is still possible; Dr. Brain hasn't said no, but if I were her I'd tell me yes and wait to see me to say no to avoid 97 questions that she can't answer coming from a very upset me).  For one thing it is highly unlikely I'll stay well enough to be home through all of it.  Last time I only made it about 4 weeks and wasn't able to care for myself and that medication change was because the old one wasn't working.  So with this being from one that is working to another we hope will work it's likely to be a bit harder.  Further going into the hospital makes the process easier  and keeps me from enduring the 2 week wash-out period required for this transition.  In the hospital they will carefully calculate a safe point to  be on a small bit of patch and a micro-dose of the new med.  Dr. Brain said the new one will take longer to work this way but I won't go through having nothing at all. 

I told Dr. Mind the other day that I am feeling more comfortable because I do know how the hospital works now and I know the staff and doctors.  I know what I'll need and so I can start to acquire some of it.

I just hate the idea of being there because of a med change due to money.  I know that there is a good chance that I will spend time on the unit over the years.  this need is just stupid, and in a year we'll be deciding if we need to do this in reverse, hospital and all.

I keep thinking about last time.  It wasn't easy because I was on suicide precautions.  The time before that i was on agitation precautions.  That was the nurses feeling sorry for me, but they don't assign a 1:1 aide very often on that unit and I had like 16 hours of that.

i also keep praying that I will get a single room.  The last time my roommate's sexual behaviors were literally traumatizing and I kept telling people, being assured that it would end and i'd be moved and the next shift would refuse.  I also learned that the first bed  doesn't have a privacy curtain in the front and this means that you sleep with the light in your eye as the doors are cracked to allow quiet bed checks.  That doesn't work well for me and i spent the last time getting up and closing the door after each check.  I am going to talk to Dr. Brain about this and emphasize how bad that roommate thing was.  i have a story from my past explaining my upset.  I'm hoping that since Dr. Brain was one of the people i told and who told the nurses to fix it that I'll get more sympathy.

I am afraid the social worker will be mean to me. I was pretty angry last time when I asked from my 2nd day until the day before discharge for her to talk to me about intensive outpatient programs.  She never did.  The day I was discharge I suddenly found nobody knew anything and i wound up referred to a place that wasn't appropriate. I complained, in tears, about this and the people who were there tried to fix it but got a lot less friendly. However my perceptions were off so who knows. 

There is also one nurse everyone dislikes.  I've seen this with other patients and Dr. Brain has said also that everyone complains about one person. i had a few fights with her my first time that wound up with the unit Dr. taking my side after I convinced him to listen to it.  Last time she called me Lisa, asking me to get another patient.  She all but called me stupid before I realized that I was 'Lisa' and corrected her.  Scary since she'd been my nurse nearly every night for 2 weeks.  When that came up a few months ago and Dr. said she had a complaint she needed to make about that nurse.  I told her my hilarious yet telling story from my last visit.  This nurse really likes and gives special attention to my roommate of that time.  I was reading in a chair in the hall where I was at the one point to hear all of this.  The nurse and my roommate were for some reason chatting in the laundry room for a long time.  They came out and kept talking.  Around then Dr. Brain came for on-call rounds.  She went in the nurses station, which is a closed room a few few behind where i was reading.  Eventually mean nurse sighed and said 'well, i suppose i should go see Dr. Brain' sigh.  like it's this huge ordeal.  Sigh.  Then she went to the nurses' station, unlocked the door and walked in a with a very fake 'Dr. Brain!!!'. Such a fake, which is probably why someone thinks she is a good nurse.   l will sit in that seat daily and never have events line up like that.  Dr. Brain wasn't impressed.

So potentially people don't like me and if last time is an indicator i will be fragile this time.  Last antidepresant change was very tearful.

Anyway, i know after that part i should start feeling better.  i just dread going through it.

(my Shift key isn't working well.  Sorry for that)

Oh yeah, that

Maybe 6 months ago I said that I'd decide whether to keep this blog going by January 15, which was the blog's 7th birthday.  I have gone bak and f orth a lot during that time and much of it was trying to figure out why I wanted to walk away.  The answer is simple, as it turns out.  I am at a point in my life where everything is strange and new and unfortunately a lot is going to be more strange and new over the next 6-8 months, which is as far ahead as I know.  I've written for years about what I was dealing with and tried to share what bipolar is like, lived in my shoes.  Right now I don't know what my shoes are like for me, much less to share.  I love support and kindness from the blog but I find that right now there's a lot of stuff I am dealing with, even working very hard at, that I'm not ready to share.  I don't want kindness or criticism.  I just want to be quiet.  I'm in the middle of asking a lot of very hard questions and answers that are even more difficult and the consideration after counseling means I need to spend time in my head.  If I write for me things come out faster and I am able to start being ready for Dr. Mind.  But if I write for the blog I have to make a lot more sense and at least try to adhere to some rules of grammar.  Writing for me also lets me say the same things 15 times on the same page with different approaches each time and it's not boring or confusing as it would be here.  For now I need to be able to cry and be upset as I write and it's just easier on my own.  I'm in a new place in life and learning to handle that is harder than I thought.

At the same time the blog means a lot to me and if I can post something that helps someone then I want to do that.  So what I've decided is that the blog will stay up and I'll post a lot less when I don't feel like  "talking" and I'll post more when I do.  If I go through this med change I will write about that because MAOI to MAOI changes are rare enough that I can't find information online about them at all, much less the unique kind I'm on to an older one.  My doctor has of course given me information but it often helps to read about what someone else felt going through the process.  There's still, I suppose, some hope that Dr. Brain has will find a way to get me the drug I'm on now.  I haven't heard from her though and I think I would if she had good news.  And we're running low on time for that.  There is also the simple fact that I am sleeping a lot right now.  My body is so happy to have medication that makes me sleepy at least 75% of the time and the nights I don't sleep I'm making up during the day.  After so many months or really 2 years of poor sleep if you count the months I couldn't sleep because of whooping cough/asthma/damaged trachea, this feels like a gift and well, it's like the best hot bath ever.

So this allows me to write to myself which is what I seem to prefer these days and also lets me share what I feel like.  I'm not going to feel pressured to post; I will when I am ready.  That too is part of why I wanted to consider stopping; it's hard to write about very painful things and then know you have to be sure to follow up because people might worry. 

I am taking on a new project as well.  There's essentially nothing posted yet because I have to write a certain amount of this before it makes sense to have it up, but I have a new blog.  The difference is that it is just and information blog and when it is finished it will be done.  It is about the things I learned while applying for SSDI and some of the things that I know helped my application to be the very rare rapdily approved mental health case.  I started to share the blog only to discover that I made a bad typo in the URL and will need to set up everything and transfer my posts.  So I'll tell you more about that later.  See, my focus is just elsewhere.

I'll be around.  But for now I'm going to go turn up the heat and work on some of the writing I know will be very difficult.

Sleep?

I'm just about to sleep some more but if I haven't said this before, I am sleeping.  The new addition isn't perfect but I do sleep.  I am very happy about this for obvious reasons.

I just did something I hope I don't regret.  I have these specific Old Navy pants that I have worn constantly for 3 years.  They are so comfortable and look nice enough to go outside in and aren't expensive.  Plus, 3 years of wear is pretty good.  The only reason they need to be replaced now really is that I stretched out the waistbands when I was really swollen from surgery as opposed to the now "swollen" for surgery.  (Funny thing, I went to buy some stuff for making clothes for my niece and my underwear all but fell off while I walked).  I'd grabbed a post-surgical pair and I guess those don't fit anymore).  Anyway, I've been trying to find them without success for some time.  I thought they must be discontinued but decided to take one more shot.  They are on clearance and apparently there aren't many left since I got the last pair of black.  I grabbed them.  I figured if I decide they were too expensive or something later I'll return them, but they will get lots of wear (I only have one pair of jeans and one pair of other pants that fit yet) and I didn't want to wait and have them all gone in the morning.

I had a gift card for the craft store from Christmas and that was so much fun.  I am going to face my great fear of buttonholes in the next while.  (Shudder).

And I'm falling asleep typing. 

strange

I slept.  The low dose neurontin worked really well.  In fact I slept about 14 hours. A very long time ago Dr. Brain told me that we needed to find something that would make me hungover and really sleepy for a few days.  This may be it.  I may need to increase the dose a little but that's not a problem.  And the great thing is this stuff is CHEAP.  I'm really hoping that it is going to continue to work (better than tonight but these nighttime panic attacks are part of my life sometimes, just not for a while.  Perhaps sleep let it come, or sadness for my family, or my mixed episode.  Tonight I took the meds, got sleepy and fell asleep before midnight for the first time in so long I don't remember.  I slept about 2 hours, rolled over and woke up panicky and anxious.  I've been trying to deal with some of the anxiety by solving what I could and I took anxiety meds but for whatever reason I am now groggy and awake and worrying about something so big I can't even name it.

This is officially the last day I'll be 36.  I don't care but it will be odd to have a year I remember so little of.  There are many periods in my life since bipolar that are hazy or that I don't remember.  This year has brought that to the highest possible point.  Everyone tells me I don't want to remember.  I'm sure that is quite true.

And now I am going to  curl up and read and see if sleep will return.  I have Dr. Mind tomorrow and I really don't want to have to do that without enough sleep.  I'm not at the tired from meds yet still too anxious to really sleep stage.  I want chocolate.:)  Perhaps hot chocolate with milk might be ok actually.  

Update.....on everything

This may not be the best post I've ever written.  I'm exhausted after a trip to see Dr. Brain and interminable wait in the pharmacy.

Yesterday something I've known was coming but was no less horrifying came:  my cousin's husband died from a 7 year cancer battle.  He was only 50 or so.  They have a 12 year old and an 8 year old and also his mother lived (lives) with them and is apparently somewhat confused.  My cousin has a lot on her plate.  I didn't know him extremely well but I do know that I respected him and found him extremely kind.   I remember when my grandma was dying, 19 years ago, and they came to visit.  We bred golden retrievers and they fell in love with one.  I can't remember if they took her home then or after my grandma's funeral or if we kept her for a few months until they moved out of NYC but regardless they took her and loved her greatly.  In fact one of the pictures a family member who is a photographer put up of him before his illness devastated his body showed his daughter and him walking that dog along with the dog who had been our male when my family fell apart and my uncles saved the dogs from my father killing them.  One of the many surgeries he went through in the last months of his life (MANY) was just a few days before my hysterectomy.  A day or two before my surgery I badly burned my arm on an iron.  It was this nasty oozy wound and  the hysterectomy booklet made it pretty clear that they wanted all your skin intact.  I knew I'd have to go in with a bandage on it but I posted on facebook to see if any of my nurse friends had rapid healing tips.  Instead I got word from him via my cousin on a treatment that made it heal significantly and which combined with the burn dressing I had in the hospital helped it heal so well that I am barely going to have a scar.  He liked to help people.  He was a psychiatrist and fought really hard to work these last months.  I think he did off and on clear up until just before Christmas which is when things really got worse fast (I think the surgeries they'd been doing were no longer controlling the cancer).  Anyway, I am so very sad for them and wish I had something to say or do that would help.  But of course there is nothing.  It does put things in a different perspective.

Today I drug myself up to see Dr. Brain.  Actually I got my car jump-started because a few days I didn't slam the rear of my car hard enough (I was afraid of sliding on my icy driveway) and the battery died, and THEN I went to see Dr. Brain.  I have a little longer before anything horrible happens.  She's been trying to get hold of the Emsam person specifically for this area and then discovered that there isn't one anymore.  Nobody seems to know what is going on.  So she's going to try to directly contact the company and tell them exactly what I did, that this is the only med that ever fully worked for me, that changing is quite risky and would involve possibly extensive hospitalization and suicidal ideation, that I'd more than likely be changed back in a year requiring my body and mind to suffer significantly twice in that time period, and that there is also a chance that if I come off Emsam and nothing else works that doesn't cost $625/month I could have a terribly hard, dangerous time that could be avoided by simply waiving the small difference between what they consider able to afford $7500 per year (I wish I could tell you what percentage of my income this is; it's actually kind of funny) and not able to afford that.  They already told me absolutely no exceptions which is apparently unusual so she's going to try even though it may make no difference.  If anyone can convince them it is her; I've seen her fight insurance a couple times and she is a gifted fighter who often wins.  And trying that last measure is important.

She didn't give me a ton of information about changing.  I asked her how bad it would be.  For the 2nd time in 10 years she took a long time to think how to word her answer.  Basically it's going to be very hard but could be worse.  She'll calculate exactly when my body no longer will have a specific amount of Emsam and work with the hospital dr. and when I get to that point they'll be able to start miniscule doses of the new med while monitoring carefully and easing the last of the Emsam out.  So I don't have to wait 2 weeks between.  She didn't say how long I could be hospitalized but she did specifically say that I'll have to be patient with getting results from the new med because I will start at such a low dose.  So I may still spend a good chunk of March in the hospital but I won't go through the horrible nothing period which was what I most feared.  

I have, to my knowledge, a month's reprieve and then after my February appointment I think we'll start weaning if we have to do this.  I could be wrong; I could get a surprise call to tell me to start sooner.  I think that depends on how long they decide the wean will go and of course if she's able to convince these people that they are putting my life at risk and really should help me for a year until I have insurance.

I got a script for a mood stabilizer that we know knocks me out to try to use to sleep.  I'm going to try that out pretty soon.  I fell asleep sometime after I got home so I'm putting off bedtime routine to make sure I'm not having trouble falling asleep because of my nap.  I really pray that this works.  The higher dose is more than I can handle but hopefully this low dose is perfect.  We'll see.

So there's a lot of information for one day.  I have no idea what is happening in so many ways and my mood isn't great right now so if I don't write much it's just the overwhelmed thing and I'll be back.

I got this from the National Alliance for the Mentally Ill. Shocking.

January 7, 2013 Dear Mental Health Advocate,   Recently, NAMI Ohio's Executive Director, Terry Russell, had the opportunity to participate in a press conference at the Statehouse calling attention to the importance of expanding Medicaid to individuals up to 138% of poverty.   Apparently, reporters at the Cleveland Plain Dealer and PolitiFact.com were so blown away by a statistic that Terry referenced to make his point that they checked it out to be sure it was true.  No surprise to us, it is regrettably quite true.   A copy of the article in the Cleveland Plain Dealer from January 2nd is printed below.   Your friends at NAMI Ohio     NAMI Ohio leader Terry Russell says people with mental illnesses die 25 years earlier, on average, than those without   by, Tom Feran   One of the questions about the state budget proposal that Gov. John Kasich is expected to announce in February is whether the state will follow through with the Affordable Care Act's expansion of Medicaid coverage.  The federal health care law would expand coverage to people with incomes up to 138 percent of the poverty level -- a provision which was made optional under the U.S. Supreme Court ruling that otherwise upheld the law. A bipartisan group of 85 health coverage organizations has written to the governor saying anything less than the full 138 percent would cause people to drop or skip coverage, endangering their health. Terry Russell, executive director of the National Alliance on Mental Illness of Ohio, told Gongwer News Service that mentally ill Ohioans struggle to stay employed, and that local mental health agencies have marginal resources to help. "The sad statistic that haunts us every day is that individuals with mental illnesses die an average of 25 years earlier than those without a mental illness," he said. "Sixty percent of these premature deaths are the result of preventable and treatable diseases, such as heart disease, diabetes, cancer and infections." PolitiFact Ohio checked into his claim about 25 years, and quickly found his statement was right on the money. A study published in 2006 by the National Association of State Mental Health Program Directors that was the focus of wide attention and concern in the mental health community looked at data from 16 states, including Ohio. It found that, on average, people with severe mental illness die 25 years earlier than the general population. The figure for Ohio was actually worse. People with severe mental illness die 32 years earlier. Calling it "a serious public health problem for the people served by our state mental health systems," the study said about 60 percent of premature deaths are due to conditions such as cardiovascular, pulmonary and infectious diseases. A number of factors contribute to risk, the study said, including modifiable factors like obesity, poor nutrition and alcohol and tobacco use. People with severe mental illness have poorer access to appropriate health care, and may be additionally vulnerable because of higher rates of homelessness, victimization, unemployment and poverty. Among its recommendations, the report called for better access to physical health care for people with serious mental illnesses to fight what it called an "epidemic of premature death and its contributing causes." Russell said that people with mental illnesses, on average, die 25 years earlier than those without a mental illness. He accurately cited findings of a major study on the issue. And in Ohio, the average is actually greater than 25 years. On the Truth-O-Meter, his claim rates True.   To link to the article, go to: http://www.cleveland.com/open/index.ssf/2013/01/nami_ohio_leader_terry_russell.html   NAMI Ohio Phone: 614-224-2700 / 800-686-2646   Email: namiohio@namiohio.org Website: http://www.namiohio.org

Too typical

I am struggling with my birthday.  heavily.  It is next week and traditionally has been kind of hard.There are many bad memories, but in the last few years i have handled (I( don't know why the no caps thing but it's better than random caps in the middle whicH I get when i try to fix it.  Sorry.  My computer is old and it's just not working well right now  i think the 2nd hard drive is dying.)

anyway this might have a year ago IF i weren't so very sick right then.  But i was and I don't remember a thing about my birthday.  This year though it's hard to do that thing where you've left another rage behind and moved another step further away from the person you thought you'd be at 18.  or 10.  or 7.  And while life is working out   and I see the good in that even well enough to surprise Dr. mind last week when i pointed out the med washout period would be easier simply because i wasn't trying to work like the last time.

But  in the course of the last 374 days everything I thought i would have in my life by this age changed or disappeared.  as odd as it sounds it really bothers me that my surgical scars are fading.  But fading means they aren't new and that it still hurts to know that there is no chance of having a child.  I can say that I've made many courageous decisions and that is true.  I did many things this year that hurt and yet were decisions i made.   I agreed to the PTSD therapy and I am glad.  i decided it was time to leave my job and I resigned.  I have filled out mountains of paperwork and shared volumes of very personal information.  i signed the consent for a hysterectomy.  I adjusted to life near povery level  and how hard that is.  3 years aGO i would have just gotten a new computer at this point.  now I'm strethcing this one and supllementing wi my dead battery netbook that doesn't do some valuable things.  I am watching my kitty get a little worse than she's ever been even with every winter dipping below baseline then improving.  i woke up horrified from a dream last night that milk, something I love and drink around 2 gallons per week was reaching $7/gallon and i was giving up milk too.  

i don't remember what I thought 37 would be as opposed to 35 or 40.  I just know I didn't anticipate all the loss and knowing more is coming. A year from now i'll be moving from my home.  It's another thing that both sucks and has to happen.  

Grieving is all it is.  grieving is just a lot of work.

Anxiety plus oops equals ick

I have been having trouble sleeping since coming off a medication we didn't think was doing anything.  I'm back on it at a lower dose but can't afford it so the goal is to get my body to adjust gradually.  Then I started being anxious about this potential med change.  (Well, not potential, something is changing because I can't afford the patches anymore.)  It's very hard to read much or find people's experiences changing from one of these to another because there are not many people using them to begin with.  So that's not helping and there's another week before I see Dr. Brain.

We agreed I could try benadryl for sleep since it is a relative of the med my body wants to hold on to.  We knew with some caution as it was used to attempt to calm my severe agitation in the hospital last year with akathesia and on the 2nd day it turned against me and further agitated me to the point I was on 1:1 just to stay on an activity.  The first night it did nothing.  The pill broke and maybe that had something to do with it.  Last night I took it and was agitated for many hours.  I finally got to sleep at 10:30 but I've been anxious all day and now it's 4 AM and I'm still anxious and not sleeping.

It's just such a mess.  From what I've read there is one of the 3 choices that is closest to what I use now.  The problem is that it is expensive and I don't qualify for assistance.  The 2nd choice I do qualify for assistance and the 3rd one is cheap (ish).  But the 2nd and 3rd have warnings that people with headaches shouldn't take it.  I am hoping that my 3.5 years of being on an MAOI plus medical competency plus promising all kinds of monitoring will let me get around that, especially since we know these headaches started with increased hormonal changes.  And in a controlled situation they are likely to try at least.  But I don't know what happens if these fail or my migraines are too much to be allowed to try.  I don't have other choices.  So I could be facing a really miserable year.  I don't think that will happen without a fight but there are just few options.

So I'm anxious and the benadryl feeling isn't wearing off.  I'm assuming it's caused mania that I just have to wait out.  Mania and anxiety are a bad combination.  

I have all this stuff I need to get done that freaks me out too.  I have to go to the DMV, I have 2 stops before I see Dr. Mind Monday, I have to get a new social security card which I think has to be done some distance from here.  I have to return some jeans to Walmart.  Etc.

Essentially I am EXTREMELY stressed and it has kind of paralyzed me.  That's unusual for me but I am truly overwhelmed.  Back to reading.  Soon I'm going to have to sleep on the couch.  I hate sleeping on the couch.  

Signed, 

A very grumpy Jen

And this year ends

(Most of this was written the other day.  I have been a day off for at least a week so who knows if this was the 30th, 31st, 1st.....I'm so mixed up I went to Dr. Mind's today, 24 hours early.)

It's early in the morning but it is the last day of the year I thought would never end.  I thought there was too much pain for it to end and I thought I couldn't survive what I lived through this year.  Losing my career to bipolar is absolutely one of the hardest things I've face and is quite possibly the hardest thing I've faced as an adult.  Even though I knew (and chose to ignore that I knew) that I was probably not going to work a full career I had put that thought far aside in the last few years as my mental health had been better controlled.  But the reality is that in August 2006 I wrote on the blog that I knew that I would be doing well if I were still working in 5 years.  It was nearly 5 years to the day when I because unable to work.

I wish now I could go back a year.  I wish I could know what life with controlled PTSD is like.  I am still afraid, in fact tonight I spent 20 minutes frantically searching for a cat I was sure was dead.  Instead I think I scared him with my fear so he hid.  I still get scared in parking lots and when I saw some guy installing new electric meters on my street I went out to shovel snow so I could see what he was up to when he got to my house.  (Poor guy sounded southern and our 8 inches of snow probably aren't much fun, especially since he wasn't wearing boots.  They bring in contracters for that kind of thing and this one seems to have come a long way). I still have many issues and I certainly still have PTSD.  But PTSD is so reduced that my life is different.  I wish I knew that I could, carefully, manage to survive on not a lot of money and that I could make the decision to move in about a year and know that the loss of my house isn't the worst loss I've faced.

What I did not know a year ago was that I could learn ways to cope. (In light of my secret revealed above about totally losing track of the day this paragraph should be taken with a grain of salt). I keep markerboards handy, one propped against the door to remind me what I need before I leave.  I keep a notebook with me.  I write lists.  My mom checks my budget monthly so I don't forget to pay something.  I keep different lists of different stores, like "food" "Sam's Club" "craft store".  I struggle still with the day of the week and the date, but since I have one fixed moment most weeks with Dr. Mind I often can count forward or backward and figure out what day it is.  I did not know that there is such a thing as normal daily living, even for me.  I may need help with heavier housework but I can keep up with dishes, kitty litter, laundry and straightening.  I can have times I feel well enough to cook.  I can take time to spend a day at Sam's Club and other stores with my mom without it being a planning nightmare.  I can paint my toenails purple because I have time and find it fun.  I made around 250 baby hats this year and that's with a long period I didn't knit because it wasn't comfortable after my hysterectomy, and then the last few weeks because I was sewing.  But both of those are fun things.  I don't know that I used to have very much fun.  A year ago my memory loss was becoming a clearly permanent problem and I was devastated. I may not remember every moment with my niece and family but it turns out that a camera can be my memory and I'm not at all bad at photography and soon I'll be taking a photo-editing class as my birthday present.  The family has gotten used to my taking several hundred pictures at each gathering and each time a few are good but the rest help me remember.  My pictures pop up on my screen saver and it is so fun to see things I don't remember, or that I do remember but not in this way.  There is a picture of me holding my niece the first time I met her.  I have this as a key chain because as soon as I saw this picture I saw that all my fears that I couldn't love her were unnecessary.  My face is so calm and peaceful and amazed.   I love being reminded of that because I was so afraid that I'd meet her and cry because I wanted my own baby.  And instead I got this wonderful, amazing little gift of a girl who currently thinks I'm one of her best playmates.  She had to sit by me at "Christmas" dinner today.  When she played she wanted me to sit close.  When I get dramatic (on purpose) she says "Silly Jen" and re-shapes my face into a smile.

That little girl is what I didn't realize I would have.  Would I trade my career for the extra time with her?  When I was working I would say no.  But looking back at how extremely hard I worked to keep up, yes.  Her intrinsic ability to know that her Aunt Jen gets very tired sometimes and needs to take naps, that sometimes Aunt Jen is moody, that Aunt Jen is just a bit different are things she has noticed.  From being told "Aunt Jen has an operation on her tummy so be careful and she can't pick you up so you can help her by climbing"  (my sister said she really barely mentioned it and I didn't either; she just needed one reminder and by the end she saw my bad decisions rapidly.  I laid on the floor to reach into her little tent to give her a flashlight and started thinking how to get back out; as soon as my face changed she asked if i needed her to help me.)came my niece assuring my mom that she would take care of me while my mom was gone for a few hours.  As I got better she asked, exactly as I'm writing "And how are you recovering?".  Nobody prompted it, the most anyone said was that little warning but she seems to figure out how I feel better than almost anyone.  This is as true for the bipolar as the surgery.  In fact it may be more so with the bipolar since we've not talked about that and she just gets it.  I know she knows I'm different than other adults.  And she doesn't care. I need someone like that in my life.

(Back to current)

Dr. Mind said today I seemed calm after Christmas.  This was true; I did well until I lost all track of time.  We talked a little bit about what is upcoming with the MAOI transition.  Not that I know much, but I do know I have a finite number of patches left and then no way to pay for them.  I'll know more next week after I see Dr. Brain.  But what struck me later was that this will freak me out completely at some point.  I've done some crying and anxiety already because it is so frustrating and medically unnecessary.But aside from asking Dr. Brain to give me so idea of how long I'll be feeling bad so I can arrange some things (I got the required software for a photo editing class and my birthday is much of the cost of it but I don't want to sign up for a class I will be too sick to handle) I'm really doing ok.

Back in early December  and really up through the week before Christmas I cried a lot.  Unusually I cried at home as well as with Dr. Mind.  We talked briefly about that today, that it feels like I finished crying and see a sort of new life (the looming med thing makes it hard to see this concretely), which I thought was impossible, and he said that was my grieving.  I'm glad he just let me go with it and encouraged me to cry as much as a needed to.  The grief thing was really hard for me to face and while I'm certain there are days ahead it will feel totally new--things like the anniversary of my resignation and of clearing out my desk in February and the really hard one will be putting my OT license in escrow.  I can then pull it out by doing my CEUs and it can stay there 4 years.  At that point I will retire it.  My national certification has a couple years left and then I'll be retired in good standing which lets me restore my license.  But I'm not fooling myself.  I almost want to just retire my Ohio license but I don't want to do something permanent just in case something makes me so much better that none of the issues in the past matter, including a job where I cannot push to do more than I can do.  I know though that that paperwork is going to hurt.

I thought I had more to say and it feels like this post is wandering everywhere.  I think my meds are working finally.  I've been having a hard time getting to sleep because the other night I couldn't log into my checking account because I messed up the password.  They said my account is locked and then I tried to use my ATM and it said no.  I know there should be money in there so I'm hoping it will be frozen.  But it's always possible for money to slip away from me, especially when I can't track things.  And I'm worried and have to deal with the bank.  I also have to make them send me paper statements for the whole year. I have numerous emails telling them I don't want online statements and yet I get a statement a few few months, always online.  I need paper ones for taxes and to get some stuff in for Medicaid (that I'll not qualify for).  I hate dealing with the bank but probably won't live here long enough to make changing worthwhile.  

So I'll say more later.  I have a new project that I want to tell you about soon.