absenteeism

So it seems that I have been away from the blog for a very long time. It's been so long since I didn't post for almost a week i can't remember. It just is a combination of avoiding the anxiety about my surgery, my last period attacking me, a bad migraine that had me vomiting while covering one eye to block light for most of a night (and there is not one migraine medication I can take so we're praying for no more of those). My mother and I actually talked things out a bit. She read about hysteretomies a bit and while I still think she thinks it's less than it is she has a better idea, sort of. I'm going to ask my dr. to include a little bit about how I'll need to rest and not do a ton for a while when she talks to my mom post-op. My mother also admits that she's afraid that I'll lose more cognition. I think that because she doesn't know all of what happened last year and the cognitive losses are very visible as I forget what I'm saying, doing, planning, what day it is, etc. I am aware of them and am terrified they will worsen but I am much more worried about the return of suicidal Jen. Not likely but could happen. The truth is I have to have this surgery. Nobody can predict the risks. So we take it one step at a time. I think waiting to know is going to be harder on her than me, and of course it's not like i'm going to wake up and we'll know. It will be at least a few weeks. So I'm also going to ask the surgeon to reassure her that things went well and there is no reason to think anything like last year will happen. The really big thing was that I said to her, very carefully, that I don't understand why she thinks I'm such a pessimist, when there is no way I would have survived the last year if I wasn't able to find hope in tiny things. I wish I could tell her that I am starting to look at Dr. Mind again, just for a couple seconds, but because my inability to maintain eye contact with anyone over 2 years old has bothered me greatly because I worked very hard for literally years to be able to do that. My being able to do so is a testament to the work of my entire grad school class. (Really. They interrupted things all the time to remind me to look at the person I was talking to. Because of them I gained a skill rare among people with bipolar disorder. It's gone away this last year and I refuse to accept that. If I can look at Dr. Mind I'll be closer to being able to just do it because he's the one that no matter how much we talk about it I still feel ashamed of some of what I did and said in there. Anyway, long story aside I pointed out to my mother than I'm not a pessimist, I am bipolar and have severe anxiety. She said that this had actually occurred to her the night before. She says she forgets that I have the mental illness and so she interprets things in the wrong context. I thought this was a huge development; Dr. Minds it is a step and gave me some more things to talk to her about. Dr. Mind is part of why I've been absent. I saw him Monday and we had kind of a difficult conversation because I didn't fully understand what his point was. So I went back today and we talked about it and I understand more what he is saying. I just find it hard not to do what he is saying I need to find ways to believe that sometimes medications will work normally; I seem to not longer believe any meds will be normal for me. I see both our points. At the same time and we still have to talk about this more but not until after surgery he doesn't agree with my assessment that nobody ever would want to be in a relationship with me. I was stunned that he thought otherwise. I just never think of such things. His point before I went into shock was that I need at some point to consider how to tell someone that I've had a hysterectomy so hope you did not want children. I think long before we got to that part of a relationship I'd have scared them off. I know from experience relationships don't go well when you are scared of being touched, have to admit that you are on many medications including one that limits some foods, I go weekly to see Dr. Mind and by the way you're going to be coming too so we can learn how to work together to not be overwhelmed and this and that and 10 other things. So we'll have that battle when I'm off pain meds. I'm also busily trying to prepare. I have most of the house cleaned up and am working on the last of it. I've been cooking and freezing foods so that I eat healthily while recovering. That kind of thing. I have numerous sewing projects for Christmas underway and am trying to get a load of baby hats ready to mail to String of Pearls. So I'm just stressed and busy and yet boring. But I miss it here so I'll try to be a little more consistent. It just feels like there is no news. Surgery in 10 days, surgery in 8 days, whatever. That's the main thing on my mind. Missed you all. opyright 2006 www.masterofirony.blogspot.com

Anxious and angry

Surgery is 15 days away. I'm nervous and trying to plan and know how to manage everything. I'm trying to get more anxiety meds out of Dr. Brain but we're having communication issues. The good thing is the pain is greatly improved over the last 2 days and I've gotten some very much needed sleep. The bad thing is my mother. She has, admittedly, done no research about hysterectomies. However, she has decided I am being pessimistic and am reading about only worst case scenarios (this because I mentioned I'd been posting on a message board, where instead of worst case you get a lot of the same old thing, which is comforting. She cannot seem to understand that this is major surgery and that while I'm having it done laparoscopically that does not mean it won't hurt. It means less incision pain, but the removal process in the body is the same. It is still major surgery. Somehow in her mind I'm supposed to be fine by day 3 or 4. In fact she hadn't bothered to change babysitting plans for my niece the week of surgery. I know that's a commitment but this was a commitment first and or all I know I won't go home until that day. Hopefully not, but that's too soon after surgery for me to have no help available. I think she interpreted that conversation as me whining. I did not whine; I stayed very patient in fact when I found out that telling me she'd get me to Dr. Mind's the week after surgery was not true. She's told me stuff but never bothered to write it down, believe me that I will need whatever, or think if she needs to be there. She also told me that I'm afraid because I remember last year's atypical recovery "and I'm still recovering". First I don't remember last year's recovery. Second, the atypical part a year ago was psych, not physical and the physical recovery took a bit and the recovery from this is harder than what was done a year ago, as I've told her about 30000 times (but I can't be right because those would be worst case situations only). Third, I know now that she doesn't understand that there was a log time that I fought to get better. There was a long time my drs. didn't know if I would recover at all. Then I got better. Now it has leveled off. That means this is probably what my mind is like. She's seemed to understand that for a long time but in truth has been humoring my pessism. I HATE that she thinks I'm pessimistic. You don't fight this disease and keep going if you are a pessimist. I have severe anxiety. I worry a lot. That's part of the disease and the way she let me grow up. But she refuses to change this idea in her head and after 2 minutes really refused to discuss this. And all I want to do is relax enough to cry and I can't. And tomorrow she'll be here to help clean. She's paying for some flooring work in the basement but before it can be done stuff needs hauled away. This hasn't been something I've been up for preparing for. And really? It's not happening before surgery. The hauling might but the flooring certainly isn't. Yes, I'd love to get it done but I can't help how I feel and that's not exactly been up to major cleaning. At this point my goal is to have the house nice for surgery. What I want doesn't matter. So I'm triply anxious and now I'm angry especially when she got offended when I tried to talk to her. I want Dr. Mind.......I want to hear that she's being herself and that I'm right nad allowed to be anxious about losing a body part. But when I see him I'm not doing the best job at talking. I'm sorry. I'm so cranky tonight. It seems like right now either there's nothing to say or there is nothing pleasant to say. Copyright 2006 www.masterofirony.blogspot.com

upright

I can sit up and even walk around some today. Things are improving. I am becoming very, very anxious though. One dr. isn't happy with me; the other will follow tomorrow. Not unrelatedly (is that a word? is now) 365 days ago I was waiting up to eat at 11:55. This is a year since the day that changed everything. I am really not handling it well. It's probably good that I see Dr. Mind tomorrow instead of Monday. I can't believe tomorrow is Thursday. I have lost nearly a week. I'm becoming more afraid of this surgery and that I will lose even more. I keep thinking about my professional self in say 2010. I know that is gone. I can't lose it again. But that hurts too. On the other hand I talked to Anne a little bit on the phone and she is as sweet as ever. Mom said that a repair man came to fix the washer today. She told Anne "Now this is Mike, he's here to fix the washer". Anne said "I will be shy". (this always last 3 seconds which is funny to see). My mom told her Mike was nice, no need to be shy. So instead she watched him with a complete commentary and questions. He finally asked my mom how how she was. My mom (or Anne although she forgets that her birthday makes her 2 instead of 1 1/2) told him and he said "Is she READING yet? Wow!" Funny. And my guess is reading easily by age 3. anyway, I have some soup to eat and maybe tonight I'll sleep. Copyright 2006 www.masterofirony.blogspot.com

Stuck

Sorry for no posts. I am enjoying (ha) my last period and it's trying to kill me. I've not slept nor stood/sat straight in days. My belly is pretty sure someone kicked me.I had to leave my patch off for a few days because I got some hives. I moved my Dr. Mind visit from Monday to Thursday but totally forgot that I had no more Seroquel. Pretty much everything else I had a supply of, but I had 150 mg and I take 750/night. I was going to go up to get it today but the can't sit up straight thing is an issue. It wouldn't matter, I can't get comfortable enough to sleep but my body is also not used to missed meds. Oh well. It's amazing we made it 8 months before this happened. Of course it happened because I've used the spares over time and didn't replace them, but that is just stupid on my part. And that is all I've done. I'm reading, knitting and playing with the increasingly boring internet. Hopefully more soon, when I'm doing anything interesting again. Copyright 2006 www.masterofirony.blogspot.com

What am I doing to myself?

This evening I was out mowing and thinking that I won't be doing that too many more times this year. My surgery is 3 weeks away and I'll be done mowing then. I was having a hard time because the mowing was causing some discomfort and it suddenly hit me: Mowing is something that I'm proud I can do because I have so many restrictions. My ability to function is completely different than it was a year ago, when I was 4 days pre-op. I need this hysterectomy. I've failed every step of the ladder to qualify for one when you are younger. I am hurting and bleeding far too heavily. It's really not a choice. But I've been as relaxed as I could manage to be about this. And today that changed and I found myself asking the questions that nobody can answer. I am so afraid that I'll lose another chunk of myself. Surgical pain, recovery, etc. doesn't bother me much because I can handle those things. I'm trying to tell myself that there's not much that really could be taken. If my cognition is worse I've managed that. I already lost work, who I was, who I wanted to be. A lot of what happened last time was a reaction to hormones. There is no reason to think I will come out of surgery suicidal this time since that has disappeared since the Mirena came out. Precautions are being taken to avoid the horrible akasethesia from last year. And yet I know there is a risk. I know because I learned the hard way. Doing this means one more time I have to just take a deep breath and do it. And I don't want to. I'm tired of living like that. I'm tired of the risks in my life being the loss of who I am. I know this awful year has also had good. I know that I have made enormous gains with PTSD and that this is a huge deal. But I also have no memory of most of a year of my life and what I know of that time is horrible. I've now had both Dr. Brain and Dr. Mind say they didn't know if I was going to come back from this last episode. And everyone seems to accept the losses with the same calm but sad acceptance I try to go for. But in reality I have a lot of feelings that are NOT calm or sad. I lost so much that I had worked so hard for and if that weren't enough I have to face the potential of losing them again. This is so hard. Copyright 2006 www.masterofirony.blogspot.com

Returning posts and mixed up uncles

First just a note that over the next while I'll be reposting numerous blogs that I took down when I was going through SSDI approval. I also am hoping to do more work on a blog I have started and not posted about getting SSDI approval successfully. Probably during my post-op time for that. Right now I'm setting projects to do because I am anxious about that time. Second, this is the other thing I'm thinking about. My grandma had 4 sons with the total spacing being 12 years apart. My father was the youngest. There were 2 older boys, gap where a baby was lost, 2 boys. The oldest uncle was somehow not seemingly affected by his childhood. I don't know if my grandfather didn't get crazy immediately or if this uncle just handled it better. I know that my grandfather was terribly abusive to #2 and that #2 passed that on. #2 was such a jerk that nobody, including his children, cried at his funeral. Most thing anyone can remember about him make him look awful. I have evidence from one of my grandma's diaries that he once borrowed my grandparent's entire month of Social Security and didn't pay them back. They had a tiny government annuity but they were living on ice cubes by the end of the month. He was just like that. But I never was around him all that much. A few times a year is all. The only time he lived near me I was still a baby. #3 was kind of like #1. Not angry and violent and hateful. Not deceitful. He was good with us kids and made us feel special. I spent a good bit of time with them because my cousin was 4 months younger and we loved to play together. I loved him dearly. I never once saw a single sign of him being abusive. I don't remember him even being frustrated when we were bad, and we certainly were. When I was about 9 I think his wife left. I can't really remember. But my cousins were staying with us for quite a while. My girl cousin and I were in the same class that year and so we were together constantly during that month. I have never physically spoken to her again. I don't even remember them leaving, which probably is because of the next part. During this period there was a day my father was particularly nasty. All day, everything set him off.That night we were all sat down and told that my uncle was in jail, accused of molesting a couple of boys. (Years later I realized that they were my classmates and they hated me for it.) My uncle, so totally not like the molesters in my family, was gentle and kind and just never gave off creepy. And I have a highly developed sense of creepy. I was too young to understand all of it but there was a plea bargain and my uncle did not serve time. I saw him twice for very short time periods in the rest of his life. He came up to help move my father out of our town and promised me that my father would not come to the house and that the family members moving him had every intention of stopping him from coming to my mom's house any way necessary. And sure enough they got him out of town without something awful. Given his own way I suspect he would have tried to kill us, and we spent the entire day locked up inside to decrease that risk. In the time period just before my father gave up on his foreclosed home he did things to make it as hard as possible for the eventual new owners. He cut electric cables, removed one piece of the custom made (he made it in fact, he was talented at woodworking) trim from each room, and did other damage I don't remember. Removing floorboards? Can't remember). So my uncle helping with that was very big as he was risking his own life, probably very literally. My cousins were taken by their mother who moved them far away and totally cut off contact with our family. However, both of them joined my uncle when they were old enough to decide legally where they wanted to be. They both had close relationships with him and clearly were not molested by him nor did they worry about it. He babysat his grandchild and nobody worried. I was talking to my mom the other day about him and how every time I think back to him I cannot believe he did what he was accused of. There was nothing bad there. I know what damage from my grandfather did to his brothers, I lived my grandfather's house of horrors and my uncle just didn't have it in him. She agreed, saying there was something funny about that whole thing. And there was. Plea bargain to probation only says they didn't have much evidence. And now I have a horrifying new idea. THere are very dominant jeans in my father's side of the family. I am an exception but most of my cousins are carbon copies. In fact, my uncle's son looks so much like him I've called him by my uncle's name. My uncle and father were only 15 months apart or so and they looked a great deal alike. We know my father was a pedophile. The boys molested that day wouldn't know my father. I have a very strong suspicion that my father molested the boys and my uncle took the fall. My father had been spending time at my uncle's, preparing the house for sale I think. He had opportunity and we know that's all it took for him. I don't know why my uncle covered it up. He may have felt helpless, that he couldn't accuse his brother or that nobody would believe him since they did look alike. He may have felt the consequences would be less for him since my father's job as a teacher would attract a lot of publicity. (So did the plea bargain, including I believe death threats). I have no proof but I do have a strong sense my guess is right. I'm going to ask y mom if she thinks there is any chance of this since she agrees my uncle was not who you'd think of molesting anyone. In fact I remember one of the hurtful things I overheard during that was my mother saying that she had always felt that child molesters should be locked up for life but knowing my uncle she didn't feel like that anymore. I know that she wasn't referring to my grandfather, who I truly think she she would have castrated herself if she lived in another time or culture. But at that time I did not know that and I thought if she felt that about my uncle than she surely meant my grandfather wasn't so awful and she could feel sorry for him. I didn't know she even knew at that point and that led to more confusion because I'd always heard a note of hate in her voice for molesters and then suddenly it was gone. I will never understand. I'll never know. I just picture my father and uncle both working in jeans and undershirts, both with wavy dark brown hair, the same size, the same relative age, similar voices and the same body language and I wonder if a 9 year old could have mistaken one from the other. I know my father was never in a linep or anything so they may have never been presented with Door #2. Somehow this PTSD thing I've done has made me better able to fill in blanks and feel confident about them. Partly because it doesn't matter, even if that did happen nothing can change it, and partly because I have gotten to see that my memories make a rational story line without major gaps or things that couldn't have happened. I got confused with my Dr. Mind homework. I tried and then realized I was trying my words in knots. So hopefully he'll accept this instead. Good-night. I hope. Copyright 2006 www.masterofirony.blogspot.com

Here's the thing

I've been spending time on a message board for women waiting for hysterectomies. I'm learning that we all have very similar fears and anxieties. It's good support and it helps to know I'm in a valid position to want nothing more than to do this and get it over with yet there is sadness with it. This is the big, absolute final ending to childbearing. I knew I couldn't but eliminating the option completely means that if next week a miracle drug were released that made me all better from bipolar and caused me to have normal, fertile cycles, then I still wouldn't have that chance. I know that at my age with very irregular ovulation I wouldn't be likely to get pregnant and I know it would be a disaster but it is sad. Dr. Mind says I've not dealt with the no children thing but have just shut it off. I'm sure that will change in the next weeks. The other thing I realized today is that I have fears that make perfect sense from last time. There is no way to know if there's a chance of a repeat, but I suspect I'll lose ground for a bit. It's normal for hormones to get messed up even keeping ovaries (I am) and for women to be pretty emotional. But more than that is that my body has been through too much. Harsh meds, side effects, allergies, medical tests and procedures, damage to my trachea from whooping cough/whooping cough itself, my injured ankle that most certainly led to my injured knee. I've had oceans of blood drawn in attempts to control this disease. The last year and a half had numerous uncomfortable gyn. exams and an invasive ultrasound. And my body has been through too much already. All of this means that I will be adding on to the list of things that my body has had "happen to" it. It's more invasive touching, time in a hospital bed, poking and prodding before, during and after. I need a chance to treat my body kindly and perhaps after this is over I'll have that It's just so weird.... Copyright 2006 www.masterofirony.blogspot.com

One thing

The last time I saw Anne she noticed my birthmark for the first time.  I gave a simple explanation and emailed my sister that questions would be forthcoming.  I showed Anne how she (and the other women in our family) have a mark on our faces that only shows when angry.  Yesterday she showed me a brown birthmark on her leg and asked what it was.  I told her it was a birthmark, kind of like Aunt Jen's but a different color.

When we took her to meet her mom one of her first statements was "Mama, birthmark on leg like Aunt Jen!".  She was excited to be like me.  And so I melted into a puddle and that's the real reason for not posting. In reality she has a few birthmarks of the same type as mine but she can't see them so my sister finding this on her leg and showing it to her is really awesome.  She's now noticed my ankle brace, birthmark, and tried to figure out my curly hair.  The big one, the mental illness, is yet to come but we've made that a fact in her life so I really hope it is just something she grows into.

She also called me to apologize for saying something she knew wasn't nice.  It took me forever to figure out that she was referring to a week ago when she was upset/scared by something and she remembered this, thought about it not being nice and told her Mama that she wasn't nice to me.  She was all worried about this.  And this is at age 2 years, no months.  She's going to a sensitive soul that one.  Life will hurt her but she will not hurt others.

I have never felt love like I feel for her and it keeps on growing.  Sometimes it seems my heart will explode because I love her so much.  Thank God for that and may my hysterectomy healing be fast so I don't lose too many weeks to my lifting restrictions and need to not be accidentally kicked in the belly.  The lifting restrictions are very high on my questions for pre-op.

Anyway, Anne is perfection in a size 3T.

And soon will come a post to tell you some things.  I lied a little earlier.  I have things I don't want to talk about, 2 things that I think are memories but are weird.  Both make me feel a little sick.

Copyright 2006 www.masterofirony.blogspot.com

The desert of blogging

I'm just writing to say I'm fine, just don't feel like I have much to say at this moment.  It seems like blogging always drops off in July and August, both in readers and blog posts.  I'm just tired from not sleeping overly well lately and not feeling 100%.  I'm also working on difficult stuff for Dr. Mind and emotionally and physically preparing for surgery.  To be honest I'm scared.  Nobody can promise I won't lose more brain cells and adjusting to this level of loss is hard enough.  And so I just don't feel like there's a lot to say.  Because I've had trouble sleeping I'm working really hard on staying calm and resting and working on sleep and that turns into a lot of time gone.

So I'm still around and I'm sure will have plenty to say soon.

Copyright 2006 www.masterofirony.blogspot.com

New perspective

I've been spending a good bit of time lately feeling frustrated by my financial situation.  I'm extremely grateful that I have SSDI and that I am able to pay my bills.   I'm not losing my house or car.  I just struggle to have enough money to make it all month long.  My mom is helping by putting most of my credit card debt on a 0% card and paying a big chunk along with my payments.  This means in a little over a year I will be in better financial shape just from ending that.  But soon after that I'll have Medicare costs.  So it's kind of hard to plan for feeling I have more money.  I suspect that feeling won't happen until I have a job of some sort.

I discovered that I'm the only family member who has never gone past our old house.  I still don't want to but I did pull it up on google maps and another website that talks about the property.  It's very weird because where we had a truly beautiful patio that we not only laid ourselves but we retrieved the bricks, one by awful one, from a place where a brick orphanage had once stood in my town.

When I did that I read more about the economy of that area.  As I've said before I great up in very rural Appalachia and the county I grew up in had enormous poverty because the coal mines were shut down when I was 2.  I remember more men not having work because of the lay-offs than did work when I was really young.  I knew growing up that we were somewhat well off compared to others in the community, but I did not understand that teachers (both of my parents) did not make much.  I remember one girl in my class who was so much better off than most of us and it really stood out.  We all knew who came from families where clothes did not come from the discount store racks.

In the years since I left, 18 later this month, the economy has changed for the better.  The last year I lived there the first fast food restaurants opened.  Now there are numerous fast food places, more stores, new schools and I don't know what other changes.  (The last time I was there at all was 5 years ago or more).  So I knew that things were better there and there are jobs.  I was quite surprised to discover that the median income is not tremendously  more that I make.  And that is based on families, and people have to pay insurance and the like out of that money.

So I realized this is a change and it's really hard.  I'd love to say I didn't get used to the lifestyle I had when I was making a lot of money.  I remember getting frustrated when I was accepted to therapy school because people kept assuming I was doing this for money; I had no idea what therapists made.  Turns out that around here an experienced therapist does well.  I had so many medical expenses that I didn't have anything like the kind of money I earned on paper, but if something broke I could replace it.  If I wanted to stock up on yarn that wasn't on sale I could.  Now I mostly get what is on clearance.  My sneakers are very expensive because of my ankle.  There are only a few options that provide the support I'm supposed to have and then I have to buy wide-width for the brace to fit.  One of my sneakers ripped from the pressure of my orthotic, brace and wobbly ankle.  I am wearing shoes I set aside a year ago because they were so uncomfortable.  They're not as bad now that I'm not on my feet a lot but they're not my favorite shoes.  A year ago this was not an issue.  Those are the changes that are hard.

On the other hand when you have to be so careful you rapidly learn to find deals.  I'm thrilled because I found Gatorade in a flavor I like at Big Lots for 25% of the usual cost.  I'll need Gatorade around surgery so that's a big deal.

But learning that about the town where I grew up I am feeling a lot less sorry for myself.  I hope I can remember the perspective as I continue to get used to life now.



Copyright 2006 www.masterofirony.blogspot.com

This will be controversial, just warning you

This is about abortion.  If you're going to be upset, please stop now.

Here's the thing:  I'm pro-life and pro-choice.  I know that makes no sense, but at some point my totally pro-life self had to sit down and think about a lot of things when newly diagnosed with bipolar, one of them being that it was entirely possible for me to follow my symptoms down paths I normally wouldn't consider.  At the time I was taking 2 medications marked unsafe for use in pregnancy, maybe 3. They typically want you to be on birth control with those meds but birth control was a nightmarish experience of vomiting and mood swings, so I wasn't on any.  I had no idea then of what my episodes would look like and even now that I've shown little impulsivity that way I can't be sure that the next one would change.  Over time I came to realize that if something happened that resulted in pregnancy I would abort.  Not only am I still on meds that cause serious birth defects (more than 1), I know that I couldn't parent a child.  Yet the dream I held onto until I finally had to admit that I was bipolar (and that I'd promised myself long ago that this diagnosis would mean no children.  It's too genetic in my family and I won't pass it on).  So if you a pro-life and know you could (theoretically) have a child that you are not fit to raise the solution is to give the baby up for adoption.  Except how could I give a child with potentially serious birth defects up to the foster system and hopefully parents that may or may not be equipped to handle the baby?  I couldn't.  I know that even in my medically unable way that I'd try to parent this child and mess it up even more than my medications and genetics.  Because I am, at least, qualified to raise a child with disabilities.  So I finally realized that the truth is, if I did something stupid and wound up pregnant, I would abort.  (I guess that this really should be past tense; I've ovulated for the last time and simply never will be capable of pregnancy again.  Hysterectomy, the ultimate birth control.)

So realizing that made me realize that while I hate the idea of abortion and am absolutely opposed to it when a rational reason can't be given, I in fact am somewhat pro-choice.  I don't know where the line is, but I do believe there are times abortion is necessary.  In my mind there are many "rules" about when it could be done and the like, but there it is.

At the same time I am so much more comfortable with pro-life.  Most of you know that I knit hats for an organization that gives them as mementos to families who are carrying to term (aka carrying a baby to birth when there is little to no chance of survival).  I do not believe that when everything is equal that a baby's diagnosis with a disability means that baby should die.  (Oh yes, I made myself come to terms with what I feel abortion is, even with knowing I would have done it).  I didn't realize until today my connection to that organization is related to the idea that these babies are always disabled.

Disabled people aren't so readily accepted in our society.  Down syndrome, which is a relatively minor disability in the scheme of things, is so feared that nearly 90% of babies with a prenatal diagnosis are aborted.  When I fill out forms I often have to check "retired" which looks really weird for a 36 year old, but "disabled" rarely is an option.  There are people who would be furious to understand that Cleveland Clinic will be paying for my surgery from pre-op to follow-up.

Being disabled and trying to live on a tiny income is tricky.  This is the first month my mom hasn't helped me financially with daily living since February.  Even then she's making a huge difference by transferring my high interest credit card to a 0% APR and helping me make what amounts to a large payment each month.  IIn 15 months I will only have one small credit card payment per month and will have considerably more money to live on.  For anything not in my tiny budget I'm reliant on her help.  Soon I need new tires; she's buying them.  Christmas?  She'll give me money.  Hotel and travel for surgery?  Her.  It's awful, but right now I am financially dependent on her.  I know that my sister has already discussed extensively with my mom what will happen when my mom isn't here for me; I think they hope I'll move near my sister.  This is partly why my niece is being taught about my disability as a matter of fact thing.  Sometimes Aunt Jen wants to _________ but she can't.

I have read numerous carrying to term stories.  It helps me to know how to pray as I make each little hat.  Today I stumbled across a website for people who do not carry to term with grim diagnoses.  I decided to read their stories because I know they are in an impossible place.  I was starting to actually see this as a choice that had merit. I admit that 35 week abortions are horrible and in no way should that happen, and I read about it happening.   And then someone explained that they aborted their baby partly because they didn't want to have a burden for their other children.

And THAT makes me angry.  My disability didn't show up when I was a fetus.   But when I was diagnosed should my family have had the right to kill me because I would need help from them through my life?  It sounds silly that way, but that is apparently a big factor for some people.  And that is where abortion is certainly wrong.  Aborting on a "what if" and feelings that a baby would have no value in this world but would instead ruin the lives of it's siblings is part of the reason it is so hard to have a disability in this world.  This is why we as a society allow for stigma to be associated with disability, for disability to mean that without significant income from someone else financially surviving is difficult.  This is why I am uninsured despite the government determining I was too ill to function in any work capacity; they make you wait 2 years and 5 months from your "day of disability".  This is why people think less of me because I don't work, and make assumptions because I don't look disabled.

I don't know how to end this.  I'm just disturbed and my battery is going to die soon.  I do ask for respectful comments only; I'm edgy enough with surgery rapidly approaching.  But somewhere there are many bad ideas floating around this world.

Copyright 2006 www.masterofirony.blogspot.com

Just one thing

I think I over-worked my abs tonight.  It felt fine doing the program so I did the things to increase toning.  Maybe I'm not as good as I thought....I am doing cleaning with my mom tomorrow so that will be interesting.  At least I've found a good, fast ab workout for the next month.  I want as much tone as I can get before my hysterectomy.

If I can ever move again, of course!  If the blog stop suddenly here you'll know that my abs exploded.:)


Copyright 2006 www.masterofirony.blogspot.com

Lacking feelings

Dr. Mind and I are working on what hopefully is the last PTSD story.  Unless a huge can of worms opens up this will end it.  Problem is, I feel nothing.  We've battled this repeatedly but this atime is especially bad.  Over the weekend I was supposed to write feelings beside the stories and then use those as cues.  I did it, I even worked hard at it, but it was just filling in words like fill in the blank tests.  So I didn't bother reading it because I knew it wouldn't have much purpose when the feelings were only expressionless words recited every few sentences.

So next week (yes, week, this is week 1 of 1 session per week) we have to do another of the exercises that force me to not run away into the deepest part of my mind rather than feel anything in conjunction with the child abuse.  These exercises are hard, partly because Dr. Mind becomes much more forceful than ever before and it's hard to handle a changed Dr. Mind.  I talked to him about this being scary and he knows and seems to feel bad but there is no forewarning about this stuff.  I can tell that it's coming because he becomes grim.  So I am not anticipatinig a fun experience next week.

 I truly can't say how much this has changed things for me.  The therapy is so hard and until we reached the part where I had shut down the sessions included me crying nearly constantly.  Now I just wish I could cry.  But I will, I'm sure.

I didn't do anything exciting today.  Short bursts of cleaning alternating with lots of rest, a nap, and now my stomach is upset and I am feeling anxious about vomiting.  Not interested.

Tomorrow I will clean more (I want a shiny clean house for after surgery and would LOVE to have time to paint my bedroom before the big day) and I want to make a prototype set of table cloth pieces.  I'm making a sort of patchwork picnic tablecloth for each family for Christmas.  My grandma did this and so having one that is made for them will be nice for my siblings.  After I'm sure I know what I'm doing I need to start cutting out squares.  I need a lot of them.

Anyway, that's my story.  I'm emotionless, at least in response to painful parts of my past.  The funny thing is that I find this last year upsetting because I remember so little and even fewer feelings; I most wanted to die.  Dr. Mind is encouraging me strongly to not try to remember.  I did talk to him one day that I think sometimes I want to talk to people/him about something and to me it's the first time the conversation has occurred and to him it's the 40th because I don't remember those things.

Getting tired.  I  hope I can sleep instead of feeling sick  And now I've got a laptop, laptop cooler, knitting and a feline on my lap.  I'm guessing that I won't be knitting for a while.  Oh well.  The feline in question is Anna, the old one and her health has taken a major turn for the better recently.  She's backtrack again, but for now I'm enjoying her truly feeing well.  Earlier today I saw something out of the corner of my eye; it was Anna throwing her toy mouse to bounce off the tv screen.  I'm pretty sure she has even gained weight.  Go cat!

Copyright 2006 www.masterofirony.blogspot.com

Sad

This has been creeping up for a (please know I don't have an A key, must replace the whole keyboard and that's why I have many typos) while.  Monday marks a year since I worked.  Which also feels like the finalization of my career.  I don't know why that marker feels like it has so much power to make this something real instead of what my shock has been saying.  I know that I am done being an OT unless some job would come along when I'm able to work a bit that somehow prevented me from throwing too much into work.

But even so I always pictured retirement as something planned, with lots of good-bye's and happiness mixed with sorrow.  I knew I might become disabled beyond the point of working and yet it never occurred to me how abrupt that would be.

I just want to have one more week.  I don't know what that would do besides let me say good-bye.  I had a few patients who I was almost done with and had been treating for a long time and I figured I'd be working for another 2 weeks so I had not gotten close to saying good-bye.  They knew I was about to have surgery but the abrupt stop was because I couldn't take vicodin and work and we hoped percocet at a low dose would allow both but I can't have percocet because I can't pee when taking it.

One thing that is sad as well is that my pain is worst when I drive very far or the day after I drive.  If I had a different job, had stayed miserable in nursing homes, I would have worked up to pre-op.  I know that really wouldn't have changed much, but it feels like it might have..

I think it's like the time that I saw a patient in the evening.  She'd had a fall and was bruised and complaining of joint pain.  I checked her out, decided she could have a small ankle fracture or a bad sprain and needed xrays. I documented about all this and the bruises extensively as well as the warnings I'd given about using a walker, etc.  I went to the office early the next morning and called the dr. as soon as they were open and requested an xray be done at her home.  I did the associated paperwork and was finishing up something else when a nurse asked me if she answered the phone usually.  I said she did and that I knew for certain she was going to be home that day.  Through the day various attempts to reach her failed and they sent a nurse out to check on her.  She was non-responsive and died very soon after.  Nobody knows what happened.  But it was so shocking.  I was the last person she saw and probably spoke to.And I left someone sore and possibly needing an ankle brace or cast and soon after she was gone.  I know death after so many years in geriatrics.  That one was hard because it more stunning than any other.

I wish that I could be in another situation.  This time the patient didn't answer, family couldn't reach her and I had just seen her and knew something was wrong.  I stopped to check on her when I was driving from place to place and discovered she'd had a mild stroke.  In that case I may have prevented tragedy.  My actions gave this woman more time.  It was my job to do this, nothing should sound like "I saved a life, I'm awesome" because that's not it.  I just helped there be more time before what is probably linevitable for that woman:  a major stroke while home alone.

I don't know how to write about what this feels like.  My career is just something I didn't want to lose.  And as I struggle to manage I keep finding myself entering a new stage when I am resentful of  some of this.   I hate living on no moneoy.  Relying on my mom for everything is humiliating.  I have to wear sturdy sneakers that help prevent rolling ankles.  They are very expsensive.  Yesterday I discovered my orthotic has worn through this pair and torn it.  So I'm wearing a pair that I have that I hated and hoping they go on sale.  Even then Mommy will be buying them for me and that's just humiliating.

I don't think this post makes sense.  But basically , very sad right now.  I lost track of time aand so haven't talked much/at all with Dr. Mind about this coming.  I just don't want to face yet again tht this is the way it is and that I should not plan for it to be the way it was before.

hello grieving process.

(Add in there sadness that having the hysterectomy just finalizes that there will be no children.  I've known this forever but I think you retain secret fantasies when you have to give up a dream.)

Copyright 2006 www.masterofirony.blogspot.com

Too much

tI started the last PTSD story (unless something new comes up) today.  This time I showed "slight" emotion twice.  So I'm supposed to put feeling words with each story and then record.  The problem is that I get overwhelmed by trying to think about that and am generally feeling anxious (please forgive typos; my A key fell off and the keyboard has to be replaced.)  I know these words; I do not know what they mean or really feel like.  Which is hardest part of all.  Being able to say what happened with my grandfather was a huge step, my temper tantrum was even bigger and I may have to do that again.  Not that I was good at verbally doing that either.  Dr. Mind made sure I knew I could yell and nobody was going to be able to hear because nobody else was on the floor.

What I lost track of until today I said something about it being August.  Monday will be a year since I saw a patient.  And while Dr. Mind encourages not remembering anniversies which I tend to do a lot of because it's how my mind works, this one is particularly hard because I never dreamed that that would be my last day ever.  And with a hysterectomy coming feeling sad about this day easily turns to fear that I will have a similar experience with surgery.  I know that every effort will be made to avoid that, and the Dr. Brain and Dr. Sweetheart are working hard to find things that are safe for me and communicate that last year I was a different person after surgery and that never changed.  It's certainly better now but I'm not who or what I was a year ago.  I can do more per day but that means 15 minutes of a task most days.

I just know that I had to have the procedure last year and this is not optional now.  If you are squeamish avert your eyes, but the proof that this must happen includes cramps every single day and during my period they are strong enough to dilate my cervix to let the enormous clots out.  I thought I'd seen ugly clots but last week I passed one as big as my hand and many way too big ones.  Trying to deal with that led to blood actually splashing onto my foot.  Disgusting but I need to remember this when I'm post-op and bored and annoyed that I chose this.

Nonetheless, knowing I haven't been a therapist in a year and feeling so sad it had to be this way kills me.  I know that Drs.  Brain and Mind both indicated this was a matter of time from happening even if I didn't want to admit it.  Somehow I thought I'd know when it was my last day.  I don't know why that would be better aside from not getting to say good-byes, but I wasn't really able to do that anyway.  A year ago my biggest concern was how to help someone waiting for a lung transplant function as normally as possible.  I never got to solve that problem.  Today aside from therapy and a leaking tire my big thing has been untangling a bunch of yarn.  Life has changed, way too much.

Tomorrow I get to see my niece.  It's likely to be the last time for a while because she is over the lifting limit I"ll have after surgery.  I intend to enjoy every second.  She truly is the best kid.  She came up to my mom's today and was thrilled to see her "grandma toys".

Anyway, I want to iron some fabric and maybe take a shower if my tension headache allows.  I also have to get that medication out of my purse.  I hate using it right now because I am about out and don't want to pay for more.

That's a whole other story, but I'm really struggling right now with my reduced income.  A year ago getting things ready for surgery was easy because I could afford what I needed.  This time it's all about squeezing water out of a stone.  I used to think "keyboard broke, big deal" because it didn't see very expensive to fix it.  Same for motel rooms for pre-op and probably the night before surgery.

I'm just totally overwhelmed.  My cat can tell; she is cuddling and being patient with my moving my arms.  I'm so proud of her; she's been off her anxiety med for a week and is doing great.  She'll go back on when I have surgery but Go Annna.

Anyway, good night.

 Copyright 2006 www.masterofirony.blogspot.com