Mourning

My trip was good and I'll write more about it later.  However, the ending was sad and I'm just wanting to be quiet.  

While I was  maybe a month from my hysterectomy my mom's (old) golden retriever started acting uncomfortable.  She took him to the vet a few times and they thought it might (probably was) a tumor affecting his liver but at his age invasive procedures made no sense and had it been cancer they couldn't have helped it.  So the decision was made to keep him comfortable.  Some medication achieved that within a couple days and he was doing better before we left with occasional days that he didn't feel well but nothing to indicate the end was near.  It turns out his liver was bleeding and the days it happened were his bad days but the bleeds were resolving.

My mom and I were to leave from the beach rental at 6 AM on Sunday to catch a ferry.  Saturday at noon we got my sister's family onto the ferry and were going to go to some shops and a beach for a few minutes then pack the car.  We went back to the house to grab something and got there in time to catch a call from the petsitter that he wasn't doing well and she was on the way for an emergent vet visit.  So I told my mom we had to go, that she needed to get back and wouldn't enjoy any of this.  She didn't think we could pack fast enough, even if we could get the last ferry.  We did though and they graciously changed our tickets.  The vet called later and said this was a bigger bleed but his symptoms were resolving and he would be able to go home Sunday or Monday.  She warned me that this would happen again and eventually a big one would happen and it would be unpredictable.  Turns out the big one was sooner than we could have guessed.

When my mom brought him home yesterday he'd had another bleed.  He worked hard to breath for hours and then it improved but he couldn't breathe well enough to lay down and sleep.  I went and got some pain meds from the vet and basically confirmed this was death.  He rested for a bit last night and then his increasing weakness showed.  He was bleeding enough to not have enough red blood cells to carry oxygen sufficiently and would have become confused then comatose.  This just didn't happen fast enough to keep him comfortable and so euthanasia was indicated.  It was very sweet, the vet who had always treated him was attached and the other vet offered to do it so she didn't have to, but she insisted on being there through it all with our sweet boy.

He was my mom's dog but we always have said they are mine as well because I've always been around and part of their lives. I am feeling his loss heavily.  In a way I'm crying for so much loss along with this particular one.  It's been a long period of many losses and I'm past handling it well.  I feel like barricading myself in a room with a 'No More Losses" sign outside.  I'm also worried about my mom; this really was sudden.  We knew we didn't have forever with him when we left but there was no indication that we would be packing a beach house in 2 hours 20 minutes, racing to the ferry and rushing home.  (The packing thing is not recommended btw.  That was incredibly hard work running up and down 2 flights of stairs about 50 times while my mom handwashed a zillion dishes and put the away and cleaned out the fridge.  I even pre-packed her; all she had to do was put things in a bag.  I am so glad we did that though or she wouldn't have had the last 24 hours to say goodbye.

Anyway, I'll be back when it doesn't hurt this much.

Insight

Again, I am thinking about happens with the blog.  Nothing it at all decided.  But I do see why I'm feeling this way.

I spent nearly 2 months at my mom's after my surgery.  I could have gone home sooner but was having work done in the house so I hung out a while longer.  While I stayed there we/she (I mostly sat in a chair and sorted things or pointed) set up a sewing room for me with a little desk and the basement got new flooring and shelving (this comes from her, I can't pay it) and it is no longer disgusting down there.  In fact I like it and I've never said that about a basement.  It is organized and clean and I'm dying to paint it in the spring when I can open the windows since there's not much airflow down there.  

When I came home I was doing better than I had in a long time and not having physical limitations routinely helped immensely.  For so long I felt very confused and overwhelmed by my life because I could only handle bare minimums for so long and was not able to set a new routine after I couldn't work.  The combination of changes at home, the attempts to set a daily schedule even when that is currently mostly based on eating healthily through the day and I moved the computer, TV and Wii out of the bedroom which gets me to sit in the living room.  This is good before it's not good to be in one room all the time but I had never tolerated the living room because I hate seeing kitchen mess when I'm allegedly relaxing, especially when I know I really can't clean that mess up.

Now things are different.  I went home and it wasn't the same as before when I either truly believed I'd return to work soon and didn't need to change things or I was too sick to change.  It's been good because I have a bit of a routine now.  I wash dishes before I shower at night.  I try to do something out of the house and then I often nap.  I do laundry every few days because so few of my clothes fit still.  The cats are fed downstairs and their cans recycled in the basement bathroom.  I sift litter every 2 days.  I make sure to have protein, veggies and fruit daily.  I am seeking more support in the community and I am also looking for ways to interact.

I have accepted a lot more about my illness.  The other day I was thinking about my first hospitalization.  I always write a ton in a journal while I"m in there as it helps me focus.  But that first time I truly thought I was just writing about it in a "this will be interesting" mode.  I thought this was an admission for med changes and would never happen again.  I cried a lot that time over being there.  The last 2 times I haven't and that has been because I know that I more than likely will spend time there occasionally for the foreseeable future.  And that's ok.  So is the undemanding part of my home schedule.  I'll add things as I can but I'm becoming more accepting of not being able to do what I want all the time.  I'm seeing my life as it is right now and I don't have the courage to look forward waiting for a newantipsychotic to come out that would maybe give me a greater chance of feeling better all the time.  I can't look forward to working because it's too far off and too abstract.  Moving and Dr. Mind leaving both share dread and great sadness but I am not ready to handle that yet.  Moving is on step one:  what do we do?  But I think it feels like, for the first time in a long time that my life is as organized as it can be and that, in turn means that there is less internal conflict to write about.  It's not like things are easy, they aren't, but finally I've found a way to have a life on disability.  And there's just not much to say.  The days are not very interesting much of the time and so I don't post.  I used to write more about issues with mental healtha nd I may try that again but I just don't know what i Think.

I'm at a new place and I guess I am not finding it easy to work out what that means.

I've got nothing

I haven't posted in forever, unless I forget totally.  I've been kind of busy getting ready for a trip and I've had a UTI that has made me not feel great.  I just am low on energy anyway and the UTI  exaggerates that.  It's been kind of a hard one to kill and I'm on my 2nd antibiotic.  

I've been making some big decisions.  This can't  happen until a few other things happen in the next year or 2, but I've reached the conclusion that hanging onto my house is just making life harder.  I love my little house and I've worked so hard to make it be nice and I've achieved remarkable energy efficiency.  But the mortgage is too much and then with utilities I have no possible way of ever being able to just buy sneakers when I need them.  I'm also lonely.  Or not lonely and that's worse.  I'm content to be isolated and that's a big danger for me.  Nobody is saying this but I'm pretty sure that my degree of suicidal risk this last year means that I am always at risk and being near someone would help.  Regardless since I managed to voice my thoughts about this I've learned Dr. Mind is 100% behind it, my mom seems to agree, and so I'm just enjoying this last year I have in my house.  The simple truth is that not only can I save a huge chunk of my tiny income, I also wouldn't depend on my mom for extra money and I wouldn't wind up with the disaster that would happen if I needed some major repair, like a new roof.  The roof is new and should last 20 some years but by then there's no way my mom will be able to help and who knows what I'll be doing.  So the crazy thing is that that although I hate seeing some of the indoor modifications that I wanted for years years but couldn't do because I was dealing with the external/energy problems.  And chances are pretty good I won't like in the house very long after it is done.  That kind of breaks my heart.  And I don't know how we'll decide to handle my living situation, but I'll deal then I guess.  I'll either be living with my mom in some time of apartment in her house or she'll purchase a teeny house or some land and a mobile home that I will pay her for.  To save the most money I'll live with her but there are difficulties there (like what happens to me when she is gone).  For sanity living very close but not right there is good.  I don't know.  The whole thing makes me cry.  But I am a long way from a work approval for any work at all and it's getting harder every month to see a budget that once bills are paid and Dr. Mind is paid I barely can afford food.  That's with only a small amount of credit card debt.  It's frustrating and is not going to really improve ever until I figure out something I can do/want to, manage to get a job doing it (because I'm going to be vastly overqualified for whatever it is educationally and also will not only have been fired twice but will have this large gap in my resume that I will only describe as "health problems" which means they'll reasonably guess that I have permanent health problems.  And while Ohio's jobless rate is now 8% lower than it was in 2009 my area brings that number up.

Anyway, that's the new plan.  I feel very sad but also very resolute and aware this is the right thing.  

As time marches on I'm still considering what will happen to the blog.  I am not really feeling that I want to keep it so I suspect that I will be just leaving the archives up.  But that could change with any number of things.

I think I'm going to shower.  I was not planning to tonight so I could in the morning but I just feel like a shower.

I am tired.  Two year olds have enough energy for 10 people at this stage of recovery from surgery and UTI and I've been with my niece for 2 days.  She's the kindest person I have ever met.  Out of the blue she asked me "are you recovering from your surgery?".  When I tried to run with her and it hurt she said "oh from your surgery" and just kept on.  She'll be in a caring profession someday.  I can see her being like Dr. Sweetheart, the surgeon who makes sure her patients go to sleep and wake holding her hand and looking at her.  Since I woke up, reacted to morphine and pretty much went back under I have a memory of a lot of activity to my left, then having an oxygen mask put on and the hand thing was used to get oxygen in while I was told to breathe.  All that was just the morphine and not a big deal, but I remember mostly that I was looking at Dr. Sweetheart and holding her hand and I thought I was still going under until a few days later when I found out that the first dose of morphine and I didn't get along.    It was just bizarre because I have been around healthcare long enough to know "big problem" "emergeny" "not emergency but must act fast" and "we can go slow and see what happens" and there was enough bustling to be in not emergency but must act fast and that was odd.  If she weren't there it would have been harder and few surgeons would have been.

Getting sleepy.  I am praying to fall asleep.  I really could use that.  We'll see.

Bipolar changes the country

I live and vote in Ohio.  Frankly, being "THE state" is a pain in the butt.  I would guess that in the last 2 months or longer I've gotten at least 20 pieces of political mail per week and more like 50 lately.  I haven't gotten called because I have cell only but for the 2 months I was at my mom's she was called at least 100 times, probably more.  We didn't answer but it's still annoying that the phone rings whenever you sit down.  I know this happens in every state but it is much worse the last few elections when Ohio has been the one that would determine it.  When I first say a projection I was shocked because Romney was way ahead.  However, only 1% of the vote was in.  

Over the years I've voted various ways.  I used to be a pretty consistent Republican.  I went to a college that was so conservative that I left adolescence and moved into my early 20s believing that what amounted to a stricter world was what I wanted.  I was still a kid...As I grew older I realized that I cared about things that weren't always conservative.  I voted for George W. but I questioned myself the first time because of his approach to the death penalty.  I voted for him a 2nd time (I know......) because I was too ill to sort it out, and because I thought that he had handled 9/11 well and had potential.  I  also wanted to support some Medicare stuff that the republicans were promoting.  As the next election came about in 2008 I started paying attention to what I thought was important. My mom who is a pretty consistent democrat kept telling me about this Obama guy.  One day I was at her house and happened to turn on the TV just in time to watch him speak in Ohio, several hours from here.  And what I saw was a human being.  He noticed someone faint in the heat, stopped speaking, requested assistance and handed his own water bottle down through the crowd to her.  He did not start talking again until the paramedics had gotten her on the way to the ambulance.  He cared and I truly felt it was real, not a political show.  So I listened more and did a great deal of reading about the different candidates and their approach to handling health care and specifically mental health care.  Other factors were involved in my vote but that was huge.  I knew that I couldn't get coverage if I lost my job.  I knew that I could manage to meet a lifetime maximum if I had enough psych hospitalizations.  I knew that healthcare costs could break me, and I was earning a decent salary then.   Even then we all knew that I should be working half-time.  I couldn't because I had no healthcare options.  Now I could buy into the high risk pool and continue working less hours and probably have worked longer.

Over this last  year or two I've  had plenty of reason to become rather focused on what was happening with healthcare.  Not just as my job, but as ME.  For 2 or 3 years I had to pay out of pocket for one of my medications, at $300-$400 per month.  The medication helped me wake up so I could work and we fought the insurance repeatedly, particularly because I'd had it covered for years before they decided not to cover it anymore.  I had about $200 of co-pays/month as well for meds, plus co-pays for drs. and I paid for Dr. Mind out of pocket. Last year when my income had completely disappeared I got the first bills from one of my hospitalizations or my first surgery.  It was several thousand dollars, I think $4000, and I had no income.  I called Cleveland Clinic, explained the situation, filled out paperwork and since then because my income is low I've gotten free care.  I just apply every 3 months.  Because of my proximity to poverty level I get 100% of my care covered.  All hospitals have this program but Cleveland Clinic expands it to cover a lot more.  Along with that I faced having no insurance, no way to see any doctor but at Cleveland Clinic (a long drive if I just need blood drawn), and no way to cover the meds I take, many thousands of dollars of meds per year ($10,000 to $15,000 per year if they were out of pocket).  Thankfully I have been eligible for assistance through big pharmaceuticals for the most expensive meds.  I never will speak as negatively of them again.  Some drug companies cut off below my tiny income and so we have to avoid meds from them.  Everything medical is complicated.  I've had many UTIs.  I am 100% sure I have one now and a test strip agreed.  It's a good thing that I have a good relationship with Dr. Body as he told me months ago that he is ok with giving me antibiotics on my say so because I've never abused them.  So there's no doctor visit unless he makes me go to the surgeon, and that's fine.  I've had plenty of UTIs and I know the drill..

The main thing this year though has been Medicare hangs above me.   I'm not eligible for Medicaid, can't afford the $400 Cobra, and even if I could afford the high risk pool which is reasonably priced, it's still too much and I'd have to have been uninsured 6 months.  Medicare kicks in long after SSDI and so I wait.  Medicare as it stands has huge problems.  I know this as a professional and as a pending recipient.  It's going to take a chunk of money each month.  I don't have the option to do managed medicare as I'd like because it costs more, so I'll have to find dental insurance privately.  But at least there will be coverage.  There's also a plan ot reduce the donut hole until it is eliminated, making meds much more manageable.  I was, however, terrified of the voucher program.  I could see so many ways that would not work and that it would create more paperwork for me and my doctors, plus it could easily have limited care ("Here's your $500 per  month").  So this time I was so focused on this one issue that most other things that mattered to me were secondary.

I voted for Obama because I am bipolar and I believe that his plans, while not perfect, will provide care that I cannot afford because SSDI payments just aren't very big. Essentially my bipolar disorder led me to my vote and with every vote counting here in Ohio that was how mine counted.

And now it is time to sleep.  I stayed up to see the speeches and am now quite sleepy.

PS

If I live in a battleground Ohio, or especially THE battleground Ohio, next time I may leave the country for about 8 months.  

Sheesh.

UTI

For several days I've had sharp pains in my pelvis I thought was from overdoing.  Today it suddenly occurred to me that this felt like a bladder infection and that I had a pelvic last week.  I did a quick test and sure enough, UTI.  So a request for antibiotics is in and with luck I'll get them tomorrow.  

I forgot how stressful watching the election results was.  Or I forgot what it was like when I feel desperate about one issue (no changing Medicare except to phase out Part D donut hole.).  

I really should try to exercise again my my belly is sore so I think I'll wait for antibiotics.

In a dazzlingly clumsy move today I busted my lip with headphones.  I have a fat lip with a big ugly scab.  Charming.

And that's it.

Rough day

It has been 8 weeks since my surgery and tomorrow is one week from the all-clear. Which is good. However, the all-clear seems to come with pain from overdoing or ripping scar tissue. I did 8 minutes of gentle yoga yesterday and today I got very sore very quickly. Today I finally wore jeans. High-waisted, elastic banded jeans with a t-shirt and loose sweater since it's not possible to really cover my belly (I tried on a shirt the other day that fit great until the top of my belly and then after 2 buttons no more would fasten. When I showed my mom I was laughing so hard that I popped the semi-on next 2 buttons open) but it felt so nice to not be wearing the same few outfits. Since I'm going on vacation in a few weeks we've been trying to find some outfits that both look nice and fit. It's a tricky thing to do. So I felt so good going to see Dr. Mind. I'm not ready to go into part of this story yet on here, but suffice it to say that we were discussing some things in the future. I've sensed for a while that he has been trying to say something and the right chance hasn't popped up. So when we talked about that date in the future he reminded me that there is something already in the works that may be hard that year. Nearly 7 years ago when I started seeing him and had to make a rapid adjustment as my prior therapist found out she was moving to Luxembourg (couldn't make that up if I tried) and so I had 3 or 4 weeks to say good-bye and find someone else that I liked and then suddenly I was coping with this huge loss as well as some huge issues at work and lithium toxicity that took a while to diagnose and had me off meds for a while because they wouldn't stay down. I soon was on disability. Our first 8 months were make it or break it. Thankfully we clicked and I began to trust him. All along he told me that when his son was out of high school that he tentatively planned to move away. Today he reminded me that time is passing and if he leaves it will probably be in about a year and a half. Which is a long time off but it will pass quickly and the last year has made me be much more dependent on him because I had to trust him to help keep me alive, and then the PTSD treatment I did with him required me to say and discuss things I've never said, along with letting myself feel things I had never felt. When I knew words but not how to demonstrate the feeling he demonstrated for me. I didn't really get good at it but the point is that I've trusted him to practically live inside my head. Therapist loss has been rough for me because it's only gone fairly smoothly once and that time I didn't break away. Dr. Mind the 1st was during college and so I always knew that when I graduated that was it. We've stayed in touch and so I never had the loss then. In grad school my psychiatrist drowned. The school handled this stupidly, as they did most things. He died in something like early June. I like to think they were hoping that his body would be found and that's why they didn't tell us until August, but his body never was found and I only know what happened because of the internet. They just sent a letter to all his patients saying that he'd died suddenly and a new psychiatrist would start Sept 1 and we should make initial appointments. I wasn't close to that man. We didn't agree on treatment and he always seemed to be rushed. He did try as hard as he knew to help my sleep issues and I think given the situation he did everything he could. But his death was hard. I have never really had a normalm, logical ending with someone treating me over time. At the same time Dr. Mind knows me so well now that he can look at me and know how i am. He can catch me lying. He will tell me over and over and over to not feel guilty because of lying about being suicidal. When I first told him some of what happened to me when I was small he had his back turned but I could see his profile and I could see that he was angry and sad about that happened to me. For almost a year now he's supervised my meds. Now he doesn't do much more than give me a key, but for several months he watched to be sure I didn't run off with extras. He has been helping me see what I need to do to start adjusting to this new life. And there's no appropriate reaction. I want him to do what he has wanted to do for years. He deserves that. I also know it's not at all set in stone and I can't obsess about it yet, just I need to think about it as a potential event. My tears are about me. But he was never meant to be a part of my life forever. Sometimes it feels like nobody was. Regardless I don't want to move on. I really don't. I've known this for years and just because it is getting closer still doesn't give me the right to be this upset. He's not supposed to be a permanent part of my life. Changing to him was the best thing that could have happened to me. Perhaps that kind of change is needed again. I don't know. I just know that I don't want it to happen and I don't want to give up one of the only people who really make me feel safe. I can't stop crying. I think in many ways I just need to cry; I haven't cried in months, at least not like this. I've hormonally cried at commercials and that kind of thing, but this is eyes swollen, exhausted sobbing for hours. I can't even pray that this works out the way I want it to because that would be wrong. So, so sad. There is no appopriate response. I know he's not the only therapist in the world but he's only the 2nd who has really helped or had any idea what to do with me. Copyright 2006 www.masterofirony.blogspot.com

Catching up

I don't have a lot to say right now.  Still healing, still tired, but much better.  I started being able to function about 5 days ago and can do what I want to now as long as I rest.  

I was cleared for all normal activity on Tuesday and can't wait to exercise. I healed well and am ready to move on.  In 6 more weeks I should feel relatively normal.  I may have begun menopause but it's too soon to know.  However the dr. is hopeful that my body likes less hormones and that seems possible given how much better I feel now than in August.  My brain works better.

If you comment and I seem to ignore it give me time.  Comments are going to spam for some reason in my email.  I tried to fix it but may or may not have succeeded.

Praying for everyone affected by the storm.  Jean Grey, you in particular.