I keep saying I don't know how much blogging I can do. I am getting the idea that I'm going to have little free time as this treatment progresses. And now I am sure of that. Because I am struggling with the part where you get used to exposure to the bad memories I am now recording my "story" (one of many) and will start listening to it for 90 minutes per day tomorrow. Since I have other things that have to happen in my life, small or not, like tomorrow is going to see my niece, Wednesday is support group and Thursday is back to Dr. Mind, by Friday I'll have to mow, ettc. and trying to
sleep takes up so much of my time, not to mention trying to eat a little more healthily (not really doing it, but it's a nice thing to pretend), etc. that 90 minutes is going to be a farily big chunk of time. Nobody said I can't knit while I listen and tomorrow I'll do it while driving because I'm also supposed to not put it off as long as possible because I dread it.
We're still working on my talking like things happened to me rather than saying "you just don't DO that to a baby". As was gently pointed out Dr. Mind indeed did NOT do those things. But I can't say it the right way. I can't. I don't want to. And soon I will have to. At some point I have to stop feeling responsible for what happened to me. And again, not sure I want to.
The thing is that this is so hard because it is so different than our relationship over so many years that I can tell he feels bad pushing so hard and so he's checking in that I do not think this is him being mean. I don't. I just don't know how to do what he is asking. Fortunately I suspect that will soon be covered.
I know that if this helps even a little in keeping me from having more episodes, decreases the nightmares, or makes me feel a little safer it will have been really a good thing. Going through it is a hard, all the time experience that I don't know how to handle. And from what I read my circumstances with it are a little different because it is originally designed for someone who has been raped, so there is one trauma. At first I was getting a little less exposure time because it was different but that didn't work so now it's 90 minutes. And I suppose that this will be repeated until I stop thinking these stories are because of me.
On the other hand I do see hwo it works and I do think that this is something Dr. Mind and I can do together and I'm very glad he took this class. But it is so hard I can't begin to explain.
Copyright 2006 www.masterofirony.blogspot.com
Monday, April 30, 2012
Saturday, April 28, 2012
Hard time
As I keep mentioning, my therapy right now is a very intense, very difficult treatment for PTSD. It's hard to explain precisely (because I know only what I read on the internet and there are some modifications being made to make this work for me), but the goal seems to be to make me go through experiences until I am able to do so without blaming myself, trying to be responsible for things that happened to me, etc. Right now we mostly go through the current topic and I say things about my responsibility and we talk about that not being true and then repeat. I am at least starting to pick up the concept but it is so hard to understand. And then last night I made some additions to this story because I remembered this huge chunk of the story that had gone away, and that made me think about some of my past that we're not even working on but which we'll get to, and I realized that I was much younger than my niece when bad things started, and I thought a lot about how a child that age has no power in this kind of situation. But she shouldn't need it. The child is just learning how to say "I love you" and still has to keep her arms out to balance herself when she runs and even the skills she is advanced (very close to what I was advanced in) give her no protection. She may say she's a toddler but in many ways she is a baby. A baby who truly trusts her family because she's been taught to be secure. Yet when I was her age terrible things were happening to me. I basically didn't get to be the delightful age she's age she is now because my innocence about things like people who should love me will hurt me, I have to keep secrets because I caused this to happen, and I knew the threats if I told.
I have known that I was so young when this happened. But it wasn't until I thought about that little girl I love so much in that situation that I knew how terrible this was. It's a different perspective than I've ever had and so I was up crying most of the night. When I put her down for a nap and she snuggles in to be comfortable and we rock and read and sing and in general she tals herself to sleep, in that time she trusts me. For the first time this week she woke and yelled for Aunt Jen instead of crying when Mommy wasn't there. When we take walks or go somewhere she trusts me to keep her safe, holding out her little hand to hold mine. She loves to have 2 grown-ups so she has 2 hands being held. I have always taken all of this for granted; of course she knows I"ll take care of her. But that wasn't true for me. I have never loved anyone like that little girl. And that is exactly how all her parentes, grandparents, great-grandparent, uncles and 2 aunts feel about her. She feels safe and secure with everyone who cares for her and doesn't have any idea that the world can hurt. I don't remember not knowing that because I never had that setcurity or love. What I thought was love was abuse and I didn't know anything about trust.
Mostly though I keep thinking of her laying on the changing table the other day. My sister was changing her and I was rubbing her head and looking at her face. She looks so much like my sister did as a toddler right now, and I was thinking absently how she has my tiny nose and mouth, my sister's bone structure and ultra-fine hair and tiny, perfect ears, and my brother-in-law's huge brown eyes. And it should not be something anyone even thinks about that she's not ever been hurt by another person. Yet to me it is absolutely amazing.
I look at my sister and am amazed by her strength. Some things were different for her but she left our childhood so much better than I did. I am sure this is a combination of bipolar and some of the things I experienced she didn't, but she did not have anything close to a normal childhood and horrible things happened to her too and yet she is raising this amazing, secure child. I'm so glad for her. But it's not exactly unnatural for me to wish I'd been able to be where she is, and that she knows how to raise at child who just lives in a safe world, something I have dreamed of and never, ever had.
But I am so glad that she has that security and that she feels safe enough to love me without hesitation.
I do however wish that I didn't have to wait from Friday evening to Monday afternoon to meet with Dr. Mind because all of this has blown my mind. I think I got way off the track that I was supposed to be on, yet I don't think it's wrong because I'm struggling with how to make sense of the numerous things I'm trying to make sense of.
My little niece may teach me more than I can ever teach her.
Copyright 2006 www.masterofirony.blogspot.com
I have known that I was so young when this happened. But it wasn't until I thought about that little girl I love so much in that situation that I knew how terrible this was. It's a different perspective than I've ever had and so I was up crying most of the night. When I put her down for a nap and she snuggles in to be comfortable and we rock and read and sing and in general she tals herself to sleep, in that time she trusts me. For the first time this week she woke and yelled for Aunt Jen instead of crying when Mommy wasn't there. When we take walks or go somewhere she trusts me to keep her safe, holding out her little hand to hold mine. She loves to have 2 grown-ups so she has 2 hands being held. I have always taken all of this for granted; of course she knows I"ll take care of her. But that wasn't true for me. I have never loved anyone like that little girl. And that is exactly how all her parentes, grandparents, great-grandparent, uncles and 2 aunts feel about her. She feels safe and secure with everyone who cares for her and doesn't have any idea that the world can hurt. I don't remember not knowing that because I never had that setcurity or love. What I thought was love was abuse and I didn't know anything about trust.
Mostly though I keep thinking of her laying on the changing table the other day. My sister was changing her and I was rubbing her head and looking at her face. She looks so much like my sister did as a toddler right now, and I was thinking absently how she has my tiny nose and mouth, my sister's bone structure and ultra-fine hair and tiny, perfect ears, and my brother-in-law's huge brown eyes. And it should not be something anyone even thinks about that she's not ever been hurt by another person. Yet to me it is absolutely amazing.
I look at my sister and am amazed by her strength. Some things were different for her but she left our childhood so much better than I did. I am sure this is a combination of bipolar and some of the things I experienced she didn't, but she did not have anything close to a normal childhood and horrible things happened to her too and yet she is raising this amazing, secure child. I'm so glad for her. But it's not exactly unnatural for me to wish I'd been able to be where she is, and that she knows how to raise at child who just lives in a safe world, something I have dreamed of and never, ever had.
But I am so glad that she has that security and that she feels safe enough to love me without hesitation.
I do however wish that I didn't have to wait from Friday evening to Monday afternoon to meet with Dr. Mind because all of this has blown my mind. I think I got way off the track that I was supposed to be on, yet I don't think it's wrong because I'm struggling with how to make sense of the numerous things I'm trying to make sense of.
My little niece may teach me more than I can ever teach her.
Copyright 2006 www.masterofirony.blogspot.com
Friday, April 27, 2012
I never thought about it
Part of this change from working to disability is suddenly losing income. Obviously. But even when you know it, I am still finding it surprising what I took for granted. I mowed my yard today for the first time since the first year I was here. I never really thought how much a lawn service cost. I didn't have time that there was daylight to mow, but so much money. I usually buy a bottle of water before Dr. Mind appointments and support group. I have to stop; that's almost $3/week. I had a consumer reports membership I never thought much of; $5/month. I had the infamous landline/long-distance which was idiotic since I had basically unlimited calling on my cell phone. Now that my ears are healed from piercing I'm trying to find some earrings I like. I have a few pairs but they are a little bigger than I thought and I want a little more variety. I found some I liked at Target but the $15 I wouldn't have thought all that much about a year ago is a big deal. I want a bicycle because I think I'll be able to get good exercise that way. Waiting to buy it also just feels weird. If I didn't have the money in the past I would have charged it and paid it back later. No way am I doing that now since there's no way to know if the money is going to work out to be there. So much has changed in how I view money. Organic milk? Thing of the past even though it is better and lasts longer. Pre-cut fruit trays? No more. Grabbing something I know my niece will be cute in when I'm at Target? Nope. Now it is more like planning to go to the consignment store to get her a couple things. It used to be that she would see those bags and say "Aunt Jen?'.
There's no point really, just that we are impressively able to not consider so many things until something makes us change.
Copyright 2006 www.masterofirony.blogspot.com
There's no point really, just that we are impressively able to not consider so many things until something makes us change.
Copyright 2006 www.masterofirony.blogspot.com
Control
I am having control issues. It's funny, I thought when SSDI was approved and my mood started to improve that I would have an easier time. In some ways, mostly the important ways, I am. But there are a few things that I have had taken from me that are hard. I miss controlling my meds. I always had a range for several meds that I could use. Now I'm not allowed to do that. I'm not even allowed to have access to most meds. I know why and I appreciate it because it did keep me safe when that was not easy. I know I'm not ready yet but I think it will be fairly soon that I will get my access back. This new therapy also is the most directive I've ever done. Conversations like "Jen, what would happen if that were the case?" "um, I'd have to do things I can't" "And what else?" (whispers which is great with a hearing impaired therapist) "I can't say it". "say it". pause. "Jen, you need to say it".Tears everywhere I say it. He's not being mean, there's a point, but it is so hard. Never before would he have made me say something--and it's going to get worse. I only talk about that stuff in clinical terms and in writing. But now I have to talk. I remember one other time we were working on feeling safe in public and I learned rapidly that I was clueless. Every answer I thought was right was wrong and wrong enough that I understood when it was explained. This feels about the same, except this time it is set up so I can't do what I did last time, which was try to guess the right answers. It's hard and the anxiety and panic feel like I have to live forever before I will relax again. It ultimately is my decision to do this and I'm working hard at it but it feels scary and I can't do much to stop the scary parts.
I think there was another control situation that I am forgetting but I don't remember now. Probably because I feel I do not have any. It's not true and I'll be fine but the baby hat census is rapidly growing. 71 hats mailed today and I already have more to go.
About time to switch to the couch for the night. The anxiety does seem to make me tired. I don't sleep wonderfully but 2 weeks ago I was never tired so wanting to get snuggled in is worth a lot.
Copyright 2006 www.masterofirony.blogspot.com
I think there was another control situation that I am forgetting but I don't remember now. Probably because I feel I do not have any. It's not true and I'll be fine but the baby hat census is rapidly growing. 71 hats mailed today and I already have more to go.
About time to switch to the couch for the night. The anxiety does seem to make me tired. I don't sleep wonderfully but 2 weeks ago I was never tired so wanting to get snuggled in is worth a lot.
Copyright 2006 www.masterofirony.blogspot.com
Thursday, April 26, 2012
For a while
I already have been less talkative on here. I suspect that there is going to be a period that I remain quiet. The PTSD technique that Dr. Mind has been using makes sense in terms of what it does, but it is very, very hard to do because the goal is to go to the point where it hurts and untangle all the pieces until I don't believe it is my fault. It is confrontational, although gently, and it is confusing because the ideas that were the basis of my family are being disputed. I really at this point am bad at recognizing things that make sense and things that doesn't. It causes a lot of anxiety, which is repeated during the day as I have to read aloud the story that we're working on (from my past) and not only do I not have any meds to help with panic attacks apparently they don't want you to do that anyway. The first two sessions of this have been as hard as anything I can remember doing in counseling. I have always had certain things I would write but not say. Now I gradually have to get used to saying these words. It also has at least on this first topic caused me to remember more, and then today when describing something I remembered more.
I can see how this works. I cannot tell if it will help me. I do know that I am doing a lot of thinking now. One day I told Dr. Mind about something funny Anne had done and he said that she sounded like a very secure child. She is, and it is because my sister and BIL are amazing parents. I remember a little about being her age and I was afraid of nearly everyone and everything. I also had already had things happen to me that never, ever should happen to a baby girl. Right now she is learning what I love you means when it is reciprocal. What she knows about love is so different than what I knew. Or even what I know.
But anyway I have a lot of very heavy stuff on my mind and heart and heart and when I am quite that is why. It's too much to explain here, too much for me to even think about for more than a short period of time.
Copyright 2006 www.masterofirony.blogspot.com
I can see how this works. I cannot tell if it will help me. I do know that I am doing a lot of thinking now. One day I told Dr. Mind about something funny Anne had done and he said that she sounded like a very secure child. She is, and it is because my sister and BIL are amazing parents. I remember a little about being her age and I was afraid of nearly everyone and everything. I also had already had things happen to me that never, ever should happen to a baby girl. Right now she is learning what I love you means when it is reciprocal. What she knows about love is so different than what I knew. Or even what I know.
But anyway I have a lot of very heavy stuff on my mind and heart and heart and when I am quite that is why. It's too much to explain here, too much for me to even think about for more than a short period of time.
Copyright 2006 www.masterofirony.blogspot.com
Wednesday, April 25, 2012
The best thing ever
Today was a busy, fun, intense day with too much driving. I heard some very cute things from my niece. But the best thing I have ever, ever heard was the first time she told me she loved me and then blew a kiss. I tear up every time I think of it.
She's a real person with real things to say and she decided she loves me. I never thought that could happen.
Copyright 2006 www.masterofirony.blogspot.com
She's a real person with real things to say and she decided she loves me. I never thought that could happen.
Copyright 2006 www.masterofirony.blogspot.com
Monday, April 23, 2012
And we're off
In the past when I have had really bad episodes and gotten to this point that I am in now where the whole world isn't colored by what I've been through I have been able to work through the episode. This time I didn't do a lot of work with Dr. Mind, I did a lot of crying and needing help to get from one day to the next. I have worked hard but in a much different way. However he came to the conclusion a while back that my not sleeping (which is making me feel worse than anything else) was PTSD related. We talked about this some and then I wrote a list of memories with trauma combined with sleep. Today I took that with me. He is fresh from training on some new PTSD techniques and so he got to practice them immediately. I thought the hardest part would be waiting for him to read the secrets as this is the most I've ever told anyone. Instead the techniques he picked are hard. Panic attack inducing hard. Also I am apparently needing to learn a new way to think about a lot of what happened. It was so hard. I had to pick the 5 most difficult experiences and read it aloud and now I have to do that at home. I also had to be still for "it is not your fault", a game we've played before but this time or maybe relevant to this instance I may have started to believe it. We'll see.
Tomorrow is toddler day (and I have tattoos! favorite aunt of the day) and then Wednesday evening is support group. I am doing the educational portion this time, which I really should work on. I am just absolutely drained from Dr. Mind though. Maybe that will mean I go to sleep at a reasonable time.
I found a new, not hard to cook, healthy meal. Pasta with black and cannellini beans, Rotel, and some past sauce. I only wish I'd had some sour cream. Still, wonderful.
Copyright 2006 www.masterofirony.blogspot.com
Tomorrow is toddler day (and I have tattoos! favorite aunt of the day) and then Wednesday evening is support group. I am doing the educational portion this time, which I really should work on. I am just absolutely drained from Dr. Mind though. Maybe that will mean I go to sleep at a reasonable time.
I found a new, not hard to cook, healthy meal. Pasta with black and cannellini beans, Rotel, and some past sauce. I only wish I'd had some sour cream. Still, wonderful.
Copyright 2006 www.masterofirony.blogspot.com
A whole career in 11 years
(This was begn on the 21st).
It's just after 3 AM. I have not been able to settle into sleep tonight. I'm supposed to go sleep on the couch when I struggle but I was so anxious about specific things that I didn't think it was going to help. And my mind kept working and I realized that the end of my career means also the end of stories. Not all stories, of course, but I had some great work stories. Tonight so many people are visiting me. I'll tell some stories but know I am changing details to protect confidentiality.
Who is haunting me tonight?
Copyright 2006 www.masterofirony.blogspot.com
It's just after 3 AM. I have not been able to settle into sleep tonight. I'm supposed to go sleep on the couch when I struggle but I was so anxious about specific things that I didn't think it was going to help. And my mind kept working and I realized that the end of my career means also the end of stories. Not all stories, of course, but I had some great work stories. Tonight so many people are visiting me. I'll tell some stories but know I am changing details to protect confidentiality.
Who is haunting me tonight?
- The last patient I ever treated was always very receptive to ideas and was learning about overdoing. This person had a transplant soon after I stopped working. I don't know what happened next.
- One of the men I enjoyed most had been in a place of authority requiring both skill with the job and political savvy. I learned about some of what I find hard now from this person, that giving a job everything that you can, when it involves people, means you're going to be hurt sometimes.
- Many years ago I went to evaluate a woman on a dementia unit. We got through the small talk and I explained simply why I was there. Then I asked her to do some things for me. Her response? "You are 12 and you may NOT tell me what to do".
- There was a patient when I worked in psych who mystified us because he'd do anything for the speech therapist, even when she was working with him at the same time, and nothing for me. Once day I hung out in the background and he did everything needed for my session. We were also puzzled as he called me "the gorilla". Turns out that was a racial slur and that because of my curly hair he thought I was not Caucasian and therefore not acceptable. If you could only see me; I have the fairest complexion there is.
- Once before we figured this all out the physical therapy assistant and I tried to get him from bed to wheelchair. This took 2 people but wasn't usually hard. Because he was protesting me he lifted both feet off the floor, leaving us holding his whole weight for a long time. We laughed so hard we barely could fix it.
- One of my favorite married couples were both in their 90s. She had advanced Alzheimer's and was nearing the end of her life. He had a little forgetfulness but was fine. His love for her was so touching. Every day he walked from the senior apartments to her room. It was connected but a long hike. I wound up involved with a need for fabrication of something weird that she needed and spent a lot of time with her. Every day he was there, and every day he'd ask my name, tell me names were hard for him so he'd write it down, and then the next day he'd repeat.
- I may have saved someone's life about a year ago. This happens from time to time in home health but this time it was more something I did than something than just being in the right place at the right time. The woman had a heart attack, done some inpatient rehab, and was just about finished working with me on some safety stuff. I saw her on a Saturday and knew she'd be home on Monday. Monday I called about 20 times because I was worried. I called her family and they couldn't reach her. I decided to stop by. It took seconds to determine she was having a stroke and had passed out and did not hear the phone. She was aware of feeling funny but not of danger. She was in the ER 20 minutes after I found her.
- Sometimes it was the staff that made you realize why medical professionals can have such bad reputations. Examples:
- Once a patient had fallen and was complaining of pain in a place where the most common fracture in the elderly occurs, in the wrist. It's generally one of those automatics, pain in that area, xray needs done. So I told the nurse that the patient was having "significant radial head region pain with swelling and erythema (redness)". I was trying to not scare the patient. The nurse yelled at me to use English. um, ok? "I think she needs a wrist xray". "WHY" "Um, these are common symptoms of the radial head being fractured." "Well, YOU can't order and xray". "yeah, that's kinda why I'm asking yu to ask the dr. Protocol and all" (half these thoughts were unsaid)
- Another time a family had asked me to help their loved one feel comfortable with new hearing aides that cost $10,000. Since learning they were expensive the patient wouldn't touch them. So I draped a sheet around the patient to catch anything that fell and we worked at managing them. We were just about independent with this when a doctor I truly dislike came to check on her, looked at what we were doing and said "oh, wow, those are those new $10000 hearing aides!". Patient turned pale and put them down and it took 3 days to retry it.
- One doctor from another culture refused to ever tell his patients they were dying. Some guessed or had family tell them. Others just never knew. Yet the doctor inevitably ordered therapy to be followed by hospice. Essentially make them stronger so death takes longer. I remember have a fit over this because I just refused to push this poor woman who hadn't been told of her stage 4 cancer and I didn't care what it messed up.
- One I accidentally found lung cancer. That was weird. The patient had a shoulder injury that healed badly and was very painful; nothing I'd tried helped. He fell, landing on that shoulder. Because of the pain pattern I requested an xray of his ribs to be sure one of them wasn't cracked. The ribs were fine. The lungs were pretty much solid tumor. He was gone in a few weeks and had it not been for that xrays nobody would have known. I never figured whether that was bad or good.
- One of my favorite patients called me "VIIRRGIN MARY" consistently from the day we met until his death about a year later. He taught me massive amounts about gaining trust and doing what is necessary to maintain that. Near the end he thought I WAS the Virgin Mary and I think he died feeling he'd confessed and was forgiven. I hope so.
- Sometimes people who were used to doing everything a certain way really struggled with short term rehab. Once one of my neighbors was my patient and was very concerned about getting in that last mowing to grind up leaves. We kept talking about it being fine to wait. Within days of his return home I drove past and he was mowing. In December.
- If you have a prominent birthmark you become very accustomed to comments and questions. One day I was talking to a relative of my patient about some issues the patient was having and how I wanted to fix them. The relative noticed my birthmark and told me that a mouse must have touched my mouth in that area when she was pregnant with me. I thought they were joking and laughed. Unfortunately they were dead serious. Oopsie.
- One patient started being very resistive to treatment and making comments to me and others about how she felt I wasn't aggressive enough. I explained the treatment plan,my supervisor explained the treatment plan, and she continued to not follow instructions resulting in additional injuries. Finally I figured out, and then confirmed, that she truly believed that if she did not get 100% recovery that it was my fault. Pressure anyone?
Copyright 2006 www.masterofirony.blogspot.com
Sunday, April 22, 2012
Grieving versus beating yourself up versus feeling sorry for yourself
These are 3 concepts that I am struggling with. I am allowed to grieve. I am not allowed to beat myself up. That is not just defined as actually doing so, I am not allowed to question what has happened because of a tendency to blame myself if that happens. I'm not allowed anywhere near that. And feeling sorry for myself is what my so-called friends said about me.
I am not feeling sorry for myself. That at least I know is wrong. In a very short time I have lost so much and I don't think it would be normal for me to not have strong, sad feelings about this. I've had losses people don't know about, like finding out that I physically can't have babies. I knew I couldn't anyway, but that's a weird thing to learn. I have not only lost the job I loved, the career I loved, I've lost what I chose to pour so much of myself into. Basically I've lost my identity. I don't think that "feeling sorry for myself" has entered the picture. If it did it was the weeks after my failed work attempt and the lithium toxicity. However, given that I was pretty confused I don't think that counts. I have been extremely stressed and sometimes frustrated in a what next? way. But not so much that I didn't know the answer was anything and that compared to the recipients of my hats nothing I was going through was hard at all.
The other 2 seem the same to me and so Dr. Mind spends a lot of time reminding me of what I am. The whole plan was to ask this week for the difference. But then something finally made it clear to me: the grieving comes out of the blue. The grieving is when I am laughing one minute and sobbing the next. The grieving is when I am not trying to think of it and the pain hits hard. The thing I'm not allowed to do is to start the thoughts. I'm anxious to see if I'm correct. But even then it is confusing because so many things trigger ouchies. I know that some of those should be fleeting thoughts and they aren't. But they are not me trying to make sense of it (and being not allowed to try to do this may be the hardest thing any therapist has ever asked me to do) so I think they are ok. I'm pretty sure I"m not ok when my mind wanders to the last few weeks I worked and I think about how nothing I did was anything I thought was for the last time. The last day I worked was a Saturday. A schedule never came up for me so I assumed I was to see the people who I should have seen earlier in the week when I took off. I think it was something like 1 visit, 1 eval in the middle of town, 1 on the far side, and 2 on the near side. Except that one person changed her mind when I got to her home, so I spent some time in the office organizing things so I'd have done that when I went on leave. I knew I was starting Percocet that night and wasn't sure if I'd be able to work on it or not. Then I evaluated someone who I'd just discharged; she was fine. My next patient said he was scheduled to see another OT the next day. I did the eval and called my supervisor. It turns out that somehow there was an error and he'd been scheduled to see several of these people. Oopsie. The last person had gone on hospice the night before and didn't need therapy for that reason. So pretty much my career ended sitting in a lobby of an assisted living laughing with my supervisor about the crazy scheduling and that I could go home early. A good ending I suppose. I just never dreamed that a true ending was possible. But I can't change that, and I think if I don't start questioning it I'm allowed to think it.
Finally, this little story is commonly shared among parents of children with disabilities. But it works just as well if one day you were working in a job you loved and awaiting minor surgery and the next you were permanently disabled.
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Copyright 2006 www.masterofirony.blogspot.com
I am not feeling sorry for myself. That at least I know is wrong. In a very short time I have lost so much and I don't think it would be normal for me to not have strong, sad feelings about this. I've had losses people don't know about, like finding out that I physically can't have babies. I knew I couldn't anyway, but that's a weird thing to learn. I have not only lost the job I loved, the career I loved, I've lost what I chose to pour so much of myself into. Basically I've lost my identity. I don't think that "feeling sorry for myself" has entered the picture. If it did it was the weeks after my failed work attempt and the lithium toxicity. However, given that I was pretty confused I don't think that counts. I have been extremely stressed and sometimes frustrated in a what next? way. But not so much that I didn't know the answer was anything and that compared to the recipients of my hats nothing I was going through was hard at all.
The other 2 seem the same to me and so Dr. Mind spends a lot of time reminding me of what I am. The whole plan was to ask this week for the difference. But then something finally made it clear to me: the grieving comes out of the blue. The grieving is when I am laughing one minute and sobbing the next. The grieving is when I am not trying to think of it and the pain hits hard. The thing I'm not allowed to do is to start the thoughts. I'm anxious to see if I'm correct. But even then it is confusing because so many things trigger ouchies. I know that some of those should be fleeting thoughts and they aren't. But they are not me trying to make sense of it (and being not allowed to try to do this may be the hardest thing any therapist has ever asked me to do) so I think they are ok. I'm pretty sure I"m not ok when my mind wanders to the last few weeks I worked and I think about how nothing I did was anything I thought was for the last time. The last day I worked was a Saturday. A schedule never came up for me so I assumed I was to see the people who I should have seen earlier in the week when I took off. I think it was something like 1 visit, 1 eval in the middle of town, 1 on the far side, and 2 on the near side. Except that one person changed her mind when I got to her home, so I spent some time in the office organizing things so I'd have done that when I went on leave. I knew I was starting Percocet that night and wasn't sure if I'd be able to work on it or not. Then I evaluated someone who I'd just discharged; she was fine. My next patient said he was scheduled to see another OT the next day. I did the eval and called my supervisor. It turns out that somehow there was an error and he'd been scheduled to see several of these people. Oopsie. The last person had gone on hospice the night before and didn't need therapy for that reason. So pretty much my career ended sitting in a lobby of an assisted living laughing with my supervisor about the crazy scheduling and that I could go home early. A good ending I suppose. I just never dreamed that a true ending was possible. But I can't change that, and I think if I don't start questioning it I'm allowed to think it.
Grieving takes many forms. The other day I started crying with Dr. Mind, somewhat out of the blue. He started to say "what is that for? You were doing so well" or something a little more gentle when he stopped and said "this is the grieving?". Grieving right now seems to be a lot of things creeping up on me and making me cry. I know there is more to come beyond this and Dr. Mind seems to think that I am going to want to start bargaining to be allowed to work because I feel better, which is actually not happening at all. I am more aware of my limitations and that I may never be a clinician again than I feel any desire to work. I can't even imagine working right now. Right now grief is still just struggling to accept what is essentially the basics for the moment: I've been very sick and am improving more than was necessarily expected. There's no telling what I'll get back. At this point there are some deficits that will make almost anything I try difficult (memory, trouble following instructions). I am not well enough to consistently make good decisions. I know there is more coming from the grieving end, but it is still hard to differentiate grieving and "what did I do wrong" thinking.
Finally, this little story is commonly shared among parents of children with disabilities. But it works just as well if one day you were working in a job you loved and awaiting minor surgery and the next you were permanently disabled.
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a
disability - to try to help people who have not shared that unique experience to
understand it, to imagine how it would feel. It's like this......Emily Perl Kingsley.
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Copyright 2006 www.masterofirony.blogspot.com
Saturday, April 21, 2012
My so-called pity party and judgmentalness
So I'm having some issues with facebook. Big ones. Like I started a whole new account where nobody will find me and almost none of my friends from growing up are invited. It's a long story that I am not even entirely clear on because some of it happened when i was really sick, but it goes something like this: Many months ago my 17 year old cousin posted something really offensive on facebook. I went to her mother and that ended that. I did make some comment about watching for this post as it was offensive and I figured more to follow. Some people did not like that. I explained I wasn't telling them what to post, just saying this one thing was pretty mean. It never hit Ohio and it never mattered. A few months later someone posted something offensive. I dropped them, but instead of doing this quietly like I thought the program told her. Hurt feelings, discussion, seeming understanding. But I was so sick and just didn't get her back on my friends list. Then the hospital, then just as that wore off the loss of income, etc., it just wasn't a priority.
The other day I clicked a cute picture which was a money making a statement that I can't translate from swearing. It wasn't offensive to mental illness although it did mention it. The poster commented about needing to take it down before someone got upset. That was clearly me. I said something. I didn't take it private and I should have. I should have just blocked everyone. But that girl picked on me for years. I think those feelings were stronger than any others. She declared she was blocking me, I left for group. I came home and checked to see if perhaps the facebook page person who I did think of as more of a friend had removed it. Instead I found this:
Copyright 2006 www.masterofirony.blogspot.com
The other day I clicked a cute picture which was a money making a statement that I can't translate from swearing. It wasn't offensive to mental illness although it did mention it. The poster commented about needing to take it down before someone got upset. That was clearly me. I said something. I didn't take it private and I should have. I should have just blocked everyone. But that girl picked on me for years. I think those feelings were stronger than any others. She declared she was blocking me, I left for group. I came home and checked to see if perhaps the facebook page person who I did think of as more of a friend had removed it. Instead I found this:
Ironically I posted this picture this morning on my FB. I hope one day-Jen realizes that I am completely harmless and help as many people as I can who have a mental illness. I'm not judgemental nor intentionally disrespectful. I hope one day you find peace Jen . For the record-this is posted for you Jen.
This was followed by a note I initially thought was friendly from the person whose wall this was posted on. Turns out, not so friendly when I read it the 7th time which is after I had responded. I responded mainly by saying that I was being misquoted, that it would be beneficial to listen to my side before deciding I was wrong, and that both these women may work in mental health but that doesn't mean they know much about how it feels. I had the same experience when I worked in psych, except that I had the 3rd level of being a psych patient myself. I pointed out how different our lives are. This led to my being called judgmental and that I am having a big pity party for myself.
My self-esteem is far, far away right now. But there is one thing I know for certain: I have not faced this that way. I have gone step by step into what needed to be done, no matter how unpleasant or embarrassing for months now. When I found out it was time for SSDI and foodstamps I had 2 choices: cry and freak out and delay processing or do what I had to do. I have done that. n I'm not sure anyone could have handled all the details I have in the last few months and done any better at staying rational, especially with how sick I was. As I feel better there is a lot of sadness. But I can't think that there are many people who wouldn't be sad and grieving a bit after a year like mine. To put it in perspective I found out my body can't have kids. And even though I knew that was never a good idea, I have to say that most women would grieve for that alone. I didn't get that chance because I have been so sick. As for judgmental, I think we all are at times. I'm not even close to as judgmental as posting that above thing which will hang out there long term. I am so mad at myself for not making sure that was gone. Oh well.
I did get a very, very kind note from my former boss and I think we're going to have dinner some night. That was desperately needed. It said not to worry about mean people, the people I worked with love me.
But I'm not liking this all that much. Many things I've said, intended for my family, were scrambled up in this. And it causes way too much anxiety. I also feel humiliated although I'm not the one(s) who thought doing this was ok. I know how gossip spreads there and eventually the whole town is going ot know a series of lies. I thought before posting that they might all know my diagnosis and I was fine with that. I am not fine with this.
So I move on and start over with the broken computer I got back today with the same problems it had before.
The truth though is that Dr. Mind wrote on a form that I have poor impulse control. This proved him correct. And it proved the people I thought were mean 20 years ago were mean...Ugh.
Copyright 2006 www.masterofirony.blogspot.com
Thursday, April 19, 2012
Finally
I am back. Not for long tonight, but that's just 2 really busy days. Yesterday I finally concluded my fight with AT&T (at least up to the complaint part) and got my service back. Then I had support group and went to the store for a minute afterward to grab any supersales. Then today I had Dr. Mind, the pulmonologist and the dreaded trip to Sam's club to use up my food stamps money. I am so grateful for that program. I easily have 2-3 months of food, minus milk and I'll probably need bread and maybe snacks and fresh stuff, but for the most part I have a ton of partially prepared, nutritious, easy foods along with meat, fish, chicken, a lifetime supply of tomato products, various snacks, canned vegetables, etc. I had enough money to spend that I actually had to go through 3 times to spend it. Which is great because I got SO MUCH. Add that to Giant Eagle having 10 pastas for $10, 10 pasta sauces for $10, pork chops buy one pack get one free, and yogurt 20 for $12 and in two days I got some amazing deals. I have a pretty good size freezer in my basement and it is officially stuffed.
Anyway, that much shopping is akin to my worst nightmare and I'm exhausted from it. I seem to be starting to sleep better and am stabilizing with my mood at least more than I had lately. I'm struggling with grieving for what I've lost which I am allowed to do versus looking back to find ways to blame myself (that is not my wording) which I am NOT allowed to do. I am struggling with the difference and am guessing it is not that clear cut since when I started crying Dr. Mind asked what that was for and then immediately said "oh hte grieving". To me this all feels the same.
I've also had a facebook thing that was pretty frustrating. I guess I didn't write about part one, but in December someone posted something unkind about mental illness. I removed that person from my friends list. We emailed and kind of worked it out but I neglected to add her back since I was kind of busy not killing myself. So yesterday I followed a link that was to a minor mental health joke and then she'd written about how she had to take it down to keep people from being offended. I confronted her, she denied that it had anything to do with me and posted various places about how I make everything about me. I realize this blog is just that, but really in life I truly don't. Nor was I at all offended by this particular little thing. She said she was blocking me but proceeded to post about me. I came home from support group, discovered this, sent her an email that obliquely said grow up, and have posted on facebook about what is wrong with me, my general rule of humor (if it isn't funny if you substitute Islamic, hispanic or gay then it's not funny), and some other stuff. What I hate now is that she could post anything she wants about me and I'll never know. Which is fine except I like to have some idea. My mom didn't agree that I should have said anything but she also called me this morning to express her anger at the person. She is just the same as she was in high school. I should have known; she was like this when we were 8. But I'm now going to be trying to hide away some of the people who I have no contact with. Not worth it.
And that's the short story of the last several days. I'll try to write again tomorrow.
Copyright 2006 www.masterofirony.blogspot.com
Anyway, that much shopping is akin to my worst nightmare and I'm exhausted from it. I seem to be starting to sleep better and am stabilizing with my mood at least more than I had lately. I'm struggling with grieving for what I've lost which I am allowed to do versus looking back to find ways to blame myself (that is not my wording) which I am NOT allowed to do. I am struggling with the difference and am guessing it is not that clear cut since when I started crying Dr. Mind asked what that was for and then immediately said "oh hte grieving". To me this all feels the same.
I've also had a facebook thing that was pretty frustrating. I guess I didn't write about part one, but in December someone posted something unkind about mental illness. I removed that person from my friends list. We emailed and kind of worked it out but I neglected to add her back since I was kind of busy not killing myself. So yesterday I followed a link that was to a minor mental health joke and then she'd written about how she had to take it down to keep people from being offended. I confronted her, she denied that it had anything to do with me and posted various places about how I make everything about me. I realize this blog is just that, but really in life I truly don't. Nor was I at all offended by this particular little thing. She said she was blocking me but proceeded to post about me. I came home from support group, discovered this, sent her an email that obliquely said grow up, and have posted on facebook about what is wrong with me, my general rule of humor (if it isn't funny if you substitute Islamic, hispanic or gay then it's not funny), and some other stuff. What I hate now is that she could post anything she wants about me and I'll never know. Which is fine except I like to have some idea. My mom didn't agree that I should have said anything but she also called me this morning to express her anger at the person. She is just the same as she was in high school. I should have known; she was like this when we were 8. But I'm now going to be trying to hide away some of the people who I have no contact with. Not worth it.
And that's the short story of the last several days. I'll try to write again tomorrow.
Copyright 2006 www.masterofirony.blogspot.com
Monday, April 16, 2012
Sunday, April 15, 2012
Don't worry
I am fine but probably will be quiet for a few more days. I am just doing a lot all at once. I'm asking hard questions of my providers, I'm trying to provide information to Dr. Mind to help sort things out, I'm tired and last night slept better (after 6 hours in the car and visits with Dr. Brain and my sister/niece/mom), once I got to sleep. I'm on a little more sedation and we'll see what that does. I'm also still caught in my many forms to fill out stage of being, and many phone calls. And to make it harder my laptop hard drive died and so I'm using a netbook for everything. Which is fine but it is slower, there is a lot of page resizing, and everything takes longer. And I have a new project in the works during my few "free" minutes that I'll share soon.
I have a number of things I want to post, but for the moment the blog is at level of attention 16 or so. Right now I need to make sure my budget is correct for April, vacuum my bedroom and move my bed back to the position that I inexplicably slept better in. For some reason when I got all my baby hats ready to send the pink ones seemed to have issues, so I am trying to rapidly knit pink hats. So far I completed one and had to rip up 2 and start over.
It's just a weird time in my life. I'll be back in the next few days. (I'm also adjusting to a new schedule with Wed. night support group, which is 2 hours of driving (plus) and 90 minutes of group. I have an additional dr. appt. this week and labs. And I have to spend down my food stamps to zero in the next 2 weeks. Tomorrow I am hoping for the energy to go to Sam's club after Dr. Mind. Which will depend as it's likely to be a teary session.
I promise, you're more likely to hear if I'm not alright than if I am. If I'm hospitalized for psych and am on my usual unit I'll have email. If I get stuck elsewhere I won't but that's unlikely. If I am hospitalized for something not psych I won't have email but if I remember to program it into my phone I will have the ability to text the blog. So quiet is likely to mean busy and handling more than I feel able to do.
And now I think, I am going to throw an angel food cake mix into the oven to eat with fresh strawberries. I want a hot fudge sundae but the ice cream place in town is closed on Sundays. There's the store and I think they still have ice cream but I try to never spend money there as everything is elevated ridiculously. It used to be that things were priced normally and it was a nice thing that the town had a place to pick up necessities without needing a 2nd mortgage. We even had the lowest gas prices around. Then it sold and we have the highest gas prices and the most expensive everything you can imagine. I am out of milk so I'm more limited on what I can make than usual. I hope if I dig around I can find chocolate. Bad part of having periods eery few weeks---constant PMS and constant chocolate cravings.
Copyright 2006 www.masterofirony.blogspot.com
I have a number of things I want to post, but for the moment the blog is at level of attention 16 or so. Right now I need to make sure my budget is correct for April, vacuum my bedroom and move my bed back to the position that I inexplicably slept better in. For some reason when I got all my baby hats ready to send the pink ones seemed to have issues, so I am trying to rapidly knit pink hats. So far I completed one and had to rip up 2 and start over.
It's just a weird time in my life. I'll be back in the next few days. (I'm also adjusting to a new schedule with Wed. night support group, which is 2 hours of driving (plus) and 90 minutes of group. I have an additional dr. appt. this week and labs. And I have to spend down my food stamps to zero in the next 2 weeks. Tomorrow I am hoping for the energy to go to Sam's club after Dr. Mind. Which will depend as it's likely to be a teary session.
I promise, you're more likely to hear if I'm not alright than if I am. If I'm hospitalized for psych and am on my usual unit I'll have email. If I get stuck elsewhere I won't but that's unlikely. If I am hospitalized for something not psych I won't have email but if I remember to program it into my phone I will have the ability to text the blog. So quiet is likely to mean busy and handling more than I feel able to do.
And now I think, I am going to throw an angel food cake mix into the oven to eat with fresh strawberries. I want a hot fudge sundae but the ice cream place in town is closed on Sundays. There's the store and I think they still have ice cream but I try to never spend money there as everything is elevated ridiculously. It used to be that things were priced normally and it was a nice thing that the town had a place to pick up necessities without needing a 2nd mortgage. We even had the lowest gas prices around. Then it sold and we have the highest gas prices and the most expensive everything you can imagine. I am out of milk so I'm more limited on what I can make than usual. I hope if I dig around I can find chocolate. Bad part of having periods eery few weeks---constant PMS and constant chocolate cravings.
Copyright 2006 www.masterofirony.blogspot.com
Thursday, April 12, 2012
Please, please pray
Over the last few weeks Dr. Mind has been talking more about my sleeping issues being related to PTSD. When the improvement was only partial after the huge stress of SSDI went away he seems to have decided that is the issue. I'm not entirely sure where the rest of this comes from and have to wait until next week to ask. At first he told me he's going to a PTSD conference soon and hopes to add to the things he still knows to do. It sounds like I am stretching his knowledge. Then he talked about maybe having me do EMDR (I only partially understand this; google it) but I am not sure that I believe in it (it seems bizarre) or that I can do it because you have to follow eye movement patterns and one of my eyes believes in doing it's own thing, which makes me laugh because it is a really weird feeling (I can feel it slip out of the movement I was doing and am aware during the movement that my vision is really strange. It lasts a second but it's still strange; I never had my lazy eye treated so I am used to the decreased depth perception (this is part of why I'm so clumsy) and that without a specific correction my eyes don't work together, but when I do feel it it is noticeable. And then today he talked a little more, vaguely about having me see someone else once a week and him once a week. I'm not sure why and I am opposed. I have many reasons for opposition and I hope to win. My guess is that he is thinking a female therapist may get more of the memories I'm blocking out but I've never succeeded in trauma therapy with a female. And there's trust and the confusion of having 2 people treating me and various other no's.
We talked a lot today about feeling safe, places that are safe, and how to increase my safety. I'm supposed to just plan to sleep on the couch for a while. I already have been sleeping with a light on for a couple weeks since discovering that my usual need for total darkness has become feeling safer with light on. We focused a lot on why I don't feel safe in bed as that seems to be the heart of the not-sleeping thing. And there is both old stuff and new stuff related to that. I had plenty of trauma already and then the weeks or months I spent staring at a bottle of pills trying to decide to take them did not help, especially once I started dreaming about hurting myself. That's when I was hospitalized but those thoughts still scare me. That was so close that I honestly am not sure that I could survive the same thing again. Probably not going to happen since I doubt that either dr. will ever not be aware of this when things are bad (statistically I am likely to go back to that place although hopefully less drastically).
And after my session because I was complaining about my tire pressure light coming on all the time Dr. Mind actually walked to my car, checked my tires, found a place a screw is missing from my repair work last year and looked through the car's manual for directions to turn off the sensor. This is the comfort level. I don't want to change that.
So I am trying to do what I can to help him know as much about trauma, sleep, and beds as I can remember. This is where prayers would be greatly appreciated over the next few days as this will be painful. So far I've learned that while I can't just start doing this at bedtime of course trying is enough to make me go into shut-down mode and sleep 2 hours. Now to just go back to sleep. And to get warm. I am freezing, no clue why.
Copyright 2006 www.masterofirony.blogspot.com
We talked a lot today about feeling safe, places that are safe, and how to increase my safety. I'm supposed to just plan to sleep on the couch for a while. I already have been sleeping with a light on for a couple weeks since discovering that my usual need for total darkness has become feeling safer with light on. We focused a lot on why I don't feel safe in bed as that seems to be the heart of the not-sleeping thing. And there is both old stuff and new stuff related to that. I had plenty of trauma already and then the weeks or months I spent staring at a bottle of pills trying to decide to take them did not help, especially once I started dreaming about hurting myself. That's when I was hospitalized but those thoughts still scare me. That was so close that I honestly am not sure that I could survive the same thing again. Probably not going to happen since I doubt that either dr. will ever not be aware of this when things are bad (statistically I am likely to go back to that place although hopefully less drastically).
And after my session because I was complaining about my tire pressure light coming on all the time Dr. Mind actually walked to my car, checked my tires, found a place a screw is missing from my repair work last year and looked through the car's manual for directions to turn off the sensor. This is the comfort level. I don't want to change that.
So I am trying to do what I can to help him know as much about trauma, sleep, and beds as I can remember. This is where prayers would be greatly appreciated over the next few days as this will be painful. So far I've learned that while I can't just start doing this at bedtime of course trying is enough to make me go into shut-down mode and sleep 2 hours. Now to just go back to sleep. And to get warm. I am freezing, no clue why.
Copyright 2006 www.masterofirony.blogspot.com
My new job
I don't feel like I have a ton to say lately. I'm spending a great deal of time trying to get financial assistance grants for medical care. It appears that Dr. Body may be available via grant. I'm waiting to hear back. I also can get help with applying for medication assistance through the foundation he works for as soon as I have my letter showing I have SSDI. I also am trying to see any doctor that I may need a check-up with in the next 6-22 months. And then the really distasteful stuff I have put off is upon me: fighting with the phone company, calling the insurance to find out if I can keep my COBRA dental and vision when I dump the medical. Going years without dental is not a good idea for me since I crack teeth frequently requiring crowns and root canals.
I got brave enough today to add up my new budget. It wasn't as scary as I thought. This is assuming that I get med assistance. I have a program I can get into at $18/month and $18/script but that still adds up. I am also going to try to get a grant to help pay for Dr. Mind. Please pray for each of these, most especially that I can keep seeing Dr. Mind. And the grants. Whatever.
Along with this I had support group tonight and made it. Seems good. More on that one later.
I'm midway through an antivirus scan on the computer that has been freezing and shutting down. It has found 2 viruses and I am praying that I can just keep the machine on long enough for the whole scan. Since the scan has been running 3 hours and is at 30% I'm doing well but if the insomnia decides to lift tonight (ha) I'm going to lose it. I guess if I have to start all over during the day I can. Besides I'm way too wide awake today.
This week has felt busy. Of course I lost a day to mixed up memory which can't have helped. I just so much wish I were sleeping. Somehow I have a feeling it would make the rest of this easier.
I absolutely have no idea what I meant to write here. I had something in mind when I opened the file.
Coming soon: I'm going to put together either a page of this or a specific webpage with some of what I know from the SSDI procedure as well as information specifically from my paperwork and Dr. Mind's (Dr. Brain's if she did any) because I think that a lot of people try to emphasize the positive to their detriment. I have plenty of negative statements.
Anyway, I am starving. I kind of forgot to eat today. I did get McDonald's apples but they had so much chemical on them that they had a crazy texture and no taste. Bizarre.
Oh, the other thing....I'm developing a new variation of my gyn. issues from last year. Now I have 9 day periods, about 2 weeks, another 9 day period, 2 weeks, etc. It's more evidence the Mirena might as well come out but someone really, really needs to find a way to not bleed excessively. I think this is causing a lot of mood swings as well.
Copyright 2006 www.masterofirony.blogspot.com
I got brave enough today to add up my new budget. It wasn't as scary as I thought. This is assuming that I get med assistance. I have a program I can get into at $18/month and $18/script but that still adds up. I am also going to try to get a grant to help pay for Dr. Mind. Please pray for each of these, most especially that I can keep seeing Dr. Mind. And the grants. Whatever.
Along with this I had support group tonight and made it. Seems good. More on that one later.
I'm midway through an antivirus scan on the computer that has been freezing and shutting down. It has found 2 viruses and I am praying that I can just keep the machine on long enough for the whole scan. Since the scan has been running 3 hours and is at 30% I'm doing well but if the insomnia decides to lift tonight (ha) I'm going to lose it. I guess if I have to start all over during the day I can. Besides I'm way too wide awake today.
This week has felt busy. Of course I lost a day to mixed up memory which can't have helped. I just so much wish I were sleeping. Somehow I have a feeling it would make the rest of this easier.
I absolutely have no idea what I meant to write here. I had something in mind when I opened the file.
Coming soon: I'm going to put together either a page of this or a specific webpage with some of what I know from the SSDI procedure as well as information specifically from my paperwork and Dr. Mind's (Dr. Brain's if she did any) because I think that a lot of people try to emphasize the positive to their detriment. I have plenty of negative statements.
Anyway, I am starving. I kind of forgot to eat today. I did get McDonald's apples but they had so much chemical on them that they had a crazy texture and no taste. Bizarre.
Oh, the other thing....I'm developing a new variation of my gyn. issues from last year. Now I have 9 day periods, about 2 weeks, another 9 day period, 2 weeks, etc. It's more evidence the Mirena might as well come out but someone really, really needs to find a way to not bleed excessively. I think this is causing a lot of mood swings as well.
Copyright 2006 www.masterofirony.blogspot.com
Tuesday, April 10, 2012
Kaboom
That was my mood slamming back down to plenty depressed. I have no clue how long it will last. I am feeling so overwhelmed. For one thing I feel like I don't have a right to feel bad after getting my approval so fast and unexpectedly. Yet I guess getting it fast and unexpectedly is exactly why I do have that right. I find it difficult to not have expectations that don't make sense. I had it in my head that if I was approved on the first time it would be another 2 months or so and by then I thought I'd be ready to manage some small amount of work, be a bit more stable, and just be more functional. This hasn't happened. It's unrealistic to think it should have, and my mood is of course as unstable as it was a week ago because nothing has changed in my biochemistry. But it's hard.
I also am in the middle of trying to figure out how to manage medical costs. I am getting 3 month supplies of every med I can before the end of this month, but May 1 I'll have only dental and vision insurance. I just can't afford expensive coverage that covers little and I'm not eligible for any assistance or programs. Cleveland clinic will assist and I just have to apply every 3 months and before any hospitalizations/surgeries. It's just a lot to have to go there for everything because of distance, and because I prefer Dr. Body and Dr. Lungs. Can't be helped though and I can always pay for a visit to Dr. Body if needed. I spent a long time on the phone with Cleveland Clinic today getting information on this and also getting some subsidized care that had gone to collections out of collections. I then spent time going through a website I was sent as a way to monitor the progress of my application to discharge my student loans. After getting a password and account set up (tricky) I read and read only to eventually discover that my loan is in the decision making process. It was there 6 weeks ago..
Then I had an argument with my mom. I was probably grouchy. But later she called and earned every grouchy thing I'd said by asking if my loan discharge would be taxable. We're talking $70,000 or so. We are not talking something I can pay taxes on. So that led to frantic searching that turned up NOTHING. But why she couldn't google herself??????
And I'm frustrated because I have ever-so-cautiously been cooking a little more. Mostly George Foreman grill and microwaved vegetables, but I made some eggs the other day and thought I could repeat it. I just have to stand at the stove through all cooking. I did it and then put a piece of plastic thoughtlessly down on the stove (ceramic top) right where the burner was. So cooking still isn't safe.
I thought there was something else but I forget. I didn't sleep nearly as well last night and that is part of why I'm depressed and grouchy today. I just feel like this approval shook up my world again. I'm so glad to have it. Really, I appreciate every computer connection that got me here and even every time the word suicidal appears in my files. But it is hard to adjust to just over 1/4 of my prior income, without insurance, without eligibility for food stamps or anything else, yet know that I'm making way more than most people on SSDI, because they keep telling me that. So I feel guilty freaking out. I guess on the counterside is that if you make more like the average you do get food stamps and maybe even Medicaid. But plenty of people make just over average and get nothing. I feel so ashamed that even though my medical expenses were 30% of what I made gross last year and medical expenses limited what I made, I get this amount of SSDI because I earned a lot of money and paid a lot into the system. And it is hard to adjust to not being able to just buy whatever, or even to have to be careful to be able to buy gas. To make this even more tricky I won't get my first check until mid-late May, so I have some time with things being even tighter, living off my savings.
And I am just finding it very hard to accept that when people said over the years that my bipolar was a severe form that they really meant it. It is weird to accept now that when I've said like a parrot that I had a severe case that they meant at the far end of that rainbow. (I saw 2 yesterday, by the way. Weird thing: I see rainbows ONLY when going to/from Dr. Mind, except once I was going to the hospital). The government has spoken and said I am so ill they are willing to accept the risk of not closely examining my case because it would waste time and money. That feels really weird.
This whole thing seems like more whining. I'm sorry. I just am having adjustment issues, good thing or not. I am just trying to see myself a new way. Again.
Copyright 2006 www.masterofirony.blogspot.com
I also am in the middle of trying to figure out how to manage medical costs. I am getting 3 month supplies of every med I can before the end of this month, but May 1 I'll have only dental and vision insurance. I just can't afford expensive coverage that covers little and I'm not eligible for any assistance or programs. Cleveland clinic will assist and I just have to apply every 3 months and before any hospitalizations/surgeries. It's just a lot to have to go there for everything because of distance, and because I prefer Dr. Body and Dr. Lungs. Can't be helped though and I can always pay for a visit to Dr. Body if needed. I spent a long time on the phone with Cleveland Clinic today getting information on this and also getting some subsidized care that had gone to collections out of collections. I then spent time going through a website I was sent as a way to monitor the progress of my application to discharge my student loans. After getting a password and account set up (tricky) I read and read only to eventually discover that my loan is in the decision making process. It was there 6 weeks ago..
Then I had an argument with my mom. I was probably grouchy. But later she called and earned every grouchy thing I'd said by asking if my loan discharge would be taxable. We're talking $70,000 or so. We are not talking something I can pay taxes on. So that led to frantic searching that turned up NOTHING. But why she couldn't google herself??????
And I'm frustrated because I have ever-so-cautiously been cooking a little more. Mostly George Foreman grill and microwaved vegetables, but I made some eggs the other day and thought I could repeat it. I just have to stand at the stove through all cooking. I did it and then put a piece of plastic thoughtlessly down on the stove (ceramic top) right where the burner was. So cooking still isn't safe.
I thought there was something else but I forget. I didn't sleep nearly as well last night and that is part of why I'm depressed and grouchy today. I just feel like this approval shook up my world again. I'm so glad to have it. Really, I appreciate every computer connection that got me here and even every time the word suicidal appears in my files. But it is hard to adjust to just over 1/4 of my prior income, without insurance, without eligibility for food stamps or anything else, yet know that I'm making way more than most people on SSDI, because they keep telling me that. So I feel guilty freaking out. I guess on the counterside is that if you make more like the average you do get food stamps and maybe even Medicaid. But plenty of people make just over average and get nothing. I feel so ashamed that even though my medical expenses were 30% of what I made gross last year and medical expenses limited what I made, I get this amount of SSDI because I earned a lot of money and paid a lot into the system. And it is hard to adjust to not being able to just buy whatever, or even to have to be careful to be able to buy gas. To make this even more tricky I won't get my first check until mid-late May, so I have some time with things being even tighter, living off my savings.
And I am just finding it very hard to accept that when people said over the years that my bipolar was a severe form that they really meant it. It is weird to accept now that when I've said like a parrot that I had a severe case that they meant at the far end of that rainbow. (I saw 2 yesterday, by the way. Weird thing: I see rainbows ONLY when going to/from Dr. Mind, except once I was going to the hospital). The government has spoken and said I am so ill they are willing to accept the risk of not closely examining my case because it would waste time and money. That feels really weird.
This whole thing seems like more whining. I'm sorry. I just am having adjustment issues, good thing or not. I am just trying to see myself a new way. Again.
Copyright 2006 www.masterofirony.blogspot.com
Congratulations Michal!
Forgive my lateness, I've been sleeping and sleepy and not thinking and remember what I intend to do, but our friend Michal who has worked so incredibly hard for months has graduated and no longer has to risk her life learning anatomy while driving!
I'm so proud of you!
Copyright 2006 www.masterofirony.blogspot.com
I'm so proud of you!
Copyright 2006 www.masterofirony.blogspot.com
Saturday, April 07, 2012
Weird
I thought when I found out the SSDI was approved that things would automatically get better. I even had this secret (because I knew it was not realistic) idea that maybe approval would be followed immediately by recovery. Not so.
I am still tired and very, very cranky. I honestly think that some of the things I haven't wanted to experience is coming out. I have apologized so many times for snapping. It feels like everything should suddenly feel better and instead I'm trying to figure out insurance and how I can exist without insurance for 6 months minimum (then I can go into the high risk pool until Medicare in 2/14.) I'm freaking out because it seems like I've had no chance to get a break from normal life things (of course not, why would I) but a few weeks ago I had to buy a new windshield. I have to buy a new vaccuum hose as mine inexplicably clogs in 5 seconds of use. Now it looks like my laptop may have died. We don't know how old it even is (my mom gave it to me used) but it has had a long life. She had another like it and it died exactly how mine has been acting, so I am praying for a chance to download important files and then it's going to repair to see if ti is salvegable (spelling?). Thank God for the netbook I purchased when I was spending a lot of nights in the place I worked. It's a good thing to have because I can post here and what not, but it is also not easy to use because of sizing issues, slow speed and just a tendency to do things like open a new window when I start a new sentence. It is good to know that laptops are not that terribly expensive compared to the past but I still could happily use that money for many other things. Until I can work a bit things are going to be financially painful. And I have no idea when I'll be allowed to try a little work.
Partly I didn't do a very good job of getting food for the weekend because I had planned to do so at Sam's club but by the time we got there I was way overwhelmed and my mom was pushing me. So I didn't buy anything to avoid having to track what I bought for cost and to save an hour or 2. But even with that and a grocery store stop I came home with tangelos which are good but I can only eat 1/day because of reflux, 3 bananas (not enough) and nothing else. I'm still learning about keeping snack food in the house and am not good at it because I don't like much of it, but being home means eating here. I know lots of good in the car snacks but they come with a premium for convenience. So that frustrates me.
I think this just another part of grief. While the way this happened means that I am very, very clearly disabled and that I had a work history showing that I tried and failed, a lot. But it also means that there is no doubt that this move is needed, no more ways to fool myself into believing that I'm fine. And that hurts, just like all the other grief.
To answer Michal, no I don't think I'm seeking more chaos. I have plenty left. I really just did something I do every so often and never have a result so I got a surprise because I used a different search engine, I guess. It also bothers me but so much else does too that it's hard to know what my real reaction would be if I weren't in this strangely grumpy, sad stage.
The lessened stress is showing in a few ways that are good. I am enjoying having food taste good for the first time in months. I've slept a bit better, although I attribute part of that to discovering that after years of needing darkness to the point of having blackout curtains I need to have a small amount of light. I'm guess that I wake up frequently with nightmares and if it is light I soothe myself back without real awareness.
Time to plug the netbook in. More tomorrow.
Copyright 2006 www.masterofirony.blogspot.com
I am still tired and very, very cranky. I honestly think that some of the things I haven't wanted to experience is coming out. I have apologized so many times for snapping. It feels like everything should suddenly feel better and instead I'm trying to figure out insurance and how I can exist without insurance for 6 months minimum (then I can go into the high risk pool until Medicare in 2/14.) I'm freaking out because it seems like I've had no chance to get a break from normal life things (of course not, why would I) but a few weeks ago I had to buy a new windshield. I have to buy a new vaccuum hose as mine inexplicably clogs in 5 seconds of use. Now it looks like my laptop may have died. We don't know how old it even is (my mom gave it to me used) but it has had a long life. She had another like it and it died exactly how mine has been acting, so I am praying for a chance to download important files and then it's going to repair to see if ti is salvegable (spelling?). Thank God for the netbook I purchased when I was spending a lot of nights in the place I worked. It's a good thing to have because I can post here and what not, but it is also not easy to use because of sizing issues, slow speed and just a tendency to do things like open a new window when I start a new sentence. It is good to know that laptops are not that terribly expensive compared to the past but I still could happily use that money for many other things. Until I can work a bit things are going to be financially painful. And I have no idea when I'll be allowed to try a little work.
Partly I didn't do a very good job of getting food for the weekend because I had planned to do so at Sam's club but by the time we got there I was way overwhelmed and my mom was pushing me. So I didn't buy anything to avoid having to track what I bought for cost and to save an hour or 2. But even with that and a grocery store stop I came home with tangelos which are good but I can only eat 1/day because of reflux, 3 bananas (not enough) and nothing else. I'm still learning about keeping snack food in the house and am not good at it because I don't like much of it, but being home means eating here. I know lots of good in the car snacks but they come with a premium for convenience. So that frustrates me.
I think this just another part of grief. While the way this happened means that I am very, very clearly disabled and that I had a work history showing that I tried and failed, a lot. But it also means that there is no doubt that this move is needed, no more ways to fool myself into believing that I'm fine. And that hurts, just like all the other grief.
To answer Michal, no I don't think I'm seeking more chaos. I have plenty left. I really just did something I do every so often and never have a result so I got a surprise because I used a different search engine, I guess. It also bothers me but so much else does too that it's hard to know what my real reaction would be if I weren't in this strangely grumpy, sad stage.
The lessened stress is showing in a few ways that are good. I am enjoying having food taste good for the first time in months. I've slept a bit better, although I attribute part of that to discovering that after years of needing darkness to the point of having blackout curtains I need to have a small amount of light. I'm guess that I wake up frequently with nightmares and if it is light I soothe myself back without real awareness.
Time to plug the netbook in. More tomorrow.
Copyright 2006 www.masterofirony.blogspot.com
Friday, April 06, 2012
hmm
Today has been a swirl of activity. Up at 6:30, went with my mom to my sister's, toddler to playground and out to lunch, then toddler nap and the first time I've seen her get upset when someone left. She wanted her mommy who was working and didn't want the fun to end either.
Then we went to Sam's club. I will go to another one this week because I was so exhausted I didn't want to do my shopping/making sure I stay in my food stamps limits thing. It's hard for me to do and it's tiring. Plus I knew I was too tired to carry things in when I got home. We went because my mom needed a few things and she isn't near one routinely.
So I am so exhausted from this long day and not sleeping well last night as per usual. Plus yesterday was an emotional day. I'm sure I'll have more to say about that.
And then I was stupid, stupid, stupid. Being with my niece reminded me of how much I loved having a baby (21 years younger ) brother (half). I haven't seen him in about 8 or 9 years because his mother who had promised to keep me in his life after she and my father divorced re-married and changed her mind. I'm waiting for him to be 18 so I can stalk him legally. (My mother, in one of her better moments, told me that this was a bad idea because he's probably creepy since his mother is. My mother hates his mother because she was involved with my father while they were married. Good reason except that she was in HIGH SCHOOL and I don't think you can really blame a kid for that. Might as well blame all kids who were molested. Huh, we've done that too.....It's really that she doesn't get it. But anyway I looked for her. I had seen her on facebook once. This time I discovered that the city paper where I was working at the time wrote an article about her being Jewish and deployed to Iraq. Which means she's adopted her husband's faith in a bit way. Which is good, I'm glad she has faith of some kind. But here is this big old article about what a hero she is and I just want to know my brother. It's another case of one too many losses.
Anyway, I'm trying to get some programs uninstalled to see if they are why my computer is being bad and it says this window must close.
Copyright 2006 www.masterofirony.blogspot.com
Then we went to Sam's club. I will go to another one this week because I was so exhausted I didn't want to do my shopping/making sure I stay in my food stamps limits thing. It's hard for me to do and it's tiring. Plus I knew I was too tired to carry things in when I got home. We went because my mom needed a few things and she isn't near one routinely.
So I am so exhausted from this long day and not sleeping well last night as per usual. Plus yesterday was an emotional day. I'm sure I'll have more to say about that.
And then I was stupid, stupid, stupid. Being with my niece reminded me of how much I loved having a baby (21 years younger ) brother (half). I haven't seen him in about 8 or 9 years because his mother who had promised to keep me in his life after she and my father divorced re-married and changed her mind. I'm waiting for him to be 18 so I can stalk him legally. (My mother, in one of her better moments, told me that this was a bad idea because he's probably creepy since his mother is. My mother hates his mother because she was involved with my father while they were married. Good reason except that she was in HIGH SCHOOL and I don't think you can really blame a kid for that. Might as well blame all kids who were molested. Huh, we've done that too.....It's really that she doesn't get it. But anyway I looked for her. I had seen her on facebook once. This time I discovered that the city paper where I was working at the time wrote an article about her being Jewish and deployed to Iraq. Which means she's adopted her husband's faith in a bit way. Which is good, I'm glad she has faith of some kind. But here is this big old article about what a hero she is and I just want to know my brother. It's another case of one too many losses.
Anyway, I'm trying to get some programs uninstalled to see if they are why my computer is being bad and it says this window must close.
Copyright 2006 www.masterofirony.blogspot.com
Thursday, April 05, 2012
A very, very important lesson for all of us
I did talk to the social security person and found out that I wasn't hallucinating, I passed a screen showing I can handle my own money that was required because of notations that I've struggled at times, and I found out that I'm going to get about $100/month more than I was previously told. I feel guilty about how much I'm going to get; it feels like not enough but is really so much more than most people get.
I got to tell Dr. Mind in person and that was good. His paperwork has to have been a major factor in this; I'm not even sure Dr. Brain got hers in because she didn't have time (I've not talked to her so don't know). He had never heard of one processing so fast either. The paperwork from the local office was submitted one day short of 2 months ago.
I've been doing some reading and it appears that what happened that my paperwork triggered a fast track decision process, which the computer comes out with when the paperwork entered shows a high likelihood of disability. Less people are involved and the turn around time from getting records is very fast. Only 5% of claims are processed this way.
But the really big lesson? The thing that probably first triggered me into that program was that I was suicidal. I don't know if they feel it is best to not put too much pressure on someone who could kill themselves by making them wait, or if they know that waiting increases suicide risk or if they just don't want suicidal people working, but whatever the cause, this awful fight of mine over recent months trying to find reasons to live, having all sorts of dangerous household stuff and my meds where I can't get them without help and supervision, this thing I have cried so many times about "why do I have to feel this way? Why do I have to feel something that is so opposite of what I really belief and feel? Why is guilt and shame over being suicidal necessary when I feel so bad?
It was necessary so I could get to today. When I was in the hospital the last time another patient told me that she was approved quickly and that it seemed that frequent hospitalizations/suicidal stuff was a big part of it. Since she had numerous suicide attempts I didn't think that what she said was true for me. However I had things she didn't that made up for the lack of drama, like a zillion pages of documentation from multiple doctors, vocational rehab recommending I stop working 5 years ago, a clearly messed up work history with 2 times of being fired because of symptoms, a history of faithfully taking meds and taking so many different meds that there's no doubt I've tried, etc.
The last 8 months have had a stunning amount of loss and pain. Nothing changes what I lost. But knowing that even the generally slow and deliberate social security people did not bother to even go through the entire first step with me shows that I need to quit feeling guilty and know that I so clearly qualified it didn't take much proof.
More later on my insurance woes.
Copyright 2006 www.masterofirony.blogspot.com
I got to tell Dr. Mind in person and that was good. His paperwork has to have been a major factor in this; I'm not even sure Dr. Brain got hers in because she didn't have time (I've not talked to her so don't know). He had never heard of one processing so fast either. The paperwork from the local office was submitted one day short of 2 months ago.
I've been doing some reading and it appears that what happened that my paperwork triggered a fast track decision process, which the computer comes out with when the paperwork entered shows a high likelihood of disability. Less people are involved and the turn around time from getting records is very fast. Only 5% of claims are processed this way.
But the really big lesson? The thing that probably first triggered me into that program was that I was suicidal. I don't know if they feel it is best to not put too much pressure on someone who could kill themselves by making them wait, or if they know that waiting increases suicide risk or if they just don't want suicidal people working, but whatever the cause, this awful fight of mine over recent months trying to find reasons to live, having all sorts of dangerous household stuff and my meds where I can't get them without help and supervision, this thing I have cried so many times about "why do I have to feel this way? Why do I have to feel something that is so opposite of what I really belief and feel? Why is guilt and shame over being suicidal necessary when I feel so bad?
It was necessary so I could get to today. When I was in the hospital the last time another patient told me that she was approved quickly and that it seemed that frequent hospitalizations/suicidal stuff was a big part of it. Since she had numerous suicide attempts I didn't think that what she said was true for me. However I had things she didn't that made up for the lack of drama, like a zillion pages of documentation from multiple doctors, vocational rehab recommending I stop working 5 years ago, a clearly messed up work history with 2 times of being fired because of symptoms, a history of faithfully taking meds and taking so many different meds that there's no doubt I've tried, etc.
The last 8 months have had a stunning amount of loss and pain. Nothing changes what I lost. But knowing that even the generally slow and deliberate social security people did not bother to even go through the entire first step with me shows that I need to quit feeling guilty and know that I so clearly qualified it didn't take much proof.
More later on my insurance woes.
Copyright 2006 www.masterofirony.blogspot.com
Thank God
I got a call this morning that my SSDI was awarded. I'm waiting for a call back for details but this is faster than these things ever are approved and only 25% go through without a battle. This means my mother gets to retire this year as scheduled. I don't have words. I can't wait for the return call!
Wednesday, April 04, 2012
I have got to get more sleep
Today's plan was simple: Leave home at 4ish, drive to the city, return something that didn't do what it was supposed to which is fine because it was expensive, pick up more cat food, go to support group, pick up a couple things at the store across from group, and come home. I had to remember to dry my pants when I got up. I did that. I took a shower and got dressed. And then I realized there was no way I could safely drive home in the dark when so very tired. So I didn't. Which makes me feel all kinds of guilty. But I have to be safe and right now by the time it gets dark I am not safe to walk, much less drive. I want to go to group badly and starting by missing 2 seems wrong, but I also can only do what I can do and when so little sleep is involved that isn't much.
I heated up sausage gravy and biscuits tonight. First I goofed by buying the wrong size and not having enough to use on the leftover biscuits. I have a lot of biscuits. Then I dropped the plate, upside down, losing most of the gravy. And creating a bit mess.
I had one of my favorite conversations with my mom, where I feel like since she's giving me money (which will be paid back) I owe her explanation for every dime I spend. She keeps making a point that she's not spending money on anything. And I am? I did buy clothes. We discussed it. I had no choice. For one thing even if last year's shorts fit I'd only have 3 pairs. For another they don't fit. I don't know what she thinks I'm buying. Some of it comes because I did spend $15 to get my ears pierced. But that was because I needed something to keep my fingers out of my hair. And that and yarn which I got with Swagbucks is it. I don't know if she thinks that I'm buying stuff because I stop at stores a lot, but that is all about bottled water which is on food stamps and which I go through 1.5 gallons/day. I also buy fruit, also with food stamps. Whatever. I'll just be so glad when this is done. It actually gets a lot better after this as about 25/% of my bills was COBRA and I'm going to go on Medicaid after this month.
Medicaid is hard to believe. I know there a tons of limitations and I won't like it. But payingi only a few dollars for prescriptions and no co-pays? Awesome. I've confused because I can't get my gynecologist to come up as a provider, yet she's at Cleveland Clinic which does come up and to my knowledge all doctors at Cleveland Clinic should be together as they are one huge practice. I may not have it long; if I am denied for SSDI then it won't cover me. If I am approved I won't be eligible but I've read there's a transiton program that will cover me. I'm just doing it one step at a time and will figure it out as I need to.
I got out of the painful facebook posts. Now it turns out most posts on facebook were from work friends. But better the lonely posts than being hurt. I think that's a bit thing with facebook; you don't think about everyone who is reading and how it might hurt them. With the blog I don't know who is reading and so it's hard for me to avoid saying painful things sometimes, I'm sure. But I try to not hurt people even though I know I fail sometimes.
And now I need to feed my cat who is patiently waiting. She goes through spells of being very hungry and the last 2 days has eaten most or all of 3 cans of food (the other cat helps), an egg, and the last dry food I had (she doesn't even like dry food). It's like feeding a vaccum cleaner.
I think my mom is going to take me down to see my niece Friday. Apparently my niece was very excited with "Aunt Jen visit? Aunt Jen come visit? Aunt Jen is coming?" etc. I've been so out of it I haven't seen her in almost a month. I hate it when that happens because I love her and she truly loves me and time with her is so precious.
Ok, the cat. Don't want her to get too hungry, she might start munching on me.
Copyright 2006 www.masterofirony.blogspot.com
I heated up sausage gravy and biscuits tonight. First I goofed by buying the wrong size and not having enough to use on the leftover biscuits. I have a lot of biscuits. Then I dropped the plate, upside down, losing most of the gravy. And creating a bit mess.
I had one of my favorite conversations with my mom, where I feel like since she's giving me money (which will be paid back) I owe her explanation for every dime I spend. She keeps making a point that she's not spending money on anything. And I am? I did buy clothes. We discussed it. I had no choice. For one thing even if last year's shorts fit I'd only have 3 pairs. For another they don't fit. I don't know what she thinks I'm buying. Some of it comes because I did spend $15 to get my ears pierced. But that was because I needed something to keep my fingers out of my hair. And that and yarn which I got with Swagbucks is it. I don't know if she thinks that I'm buying stuff because I stop at stores a lot, but that is all about bottled water which is on food stamps and which I go through 1.5 gallons/day. I also buy fruit, also with food stamps. Whatever. I'll just be so glad when this is done. It actually gets a lot better after this as about 25/% of my bills was COBRA and I'm going to go on Medicaid after this month.
Medicaid is hard to believe. I know there a tons of limitations and I won't like it. But payingi only a few dollars for prescriptions and no co-pays? Awesome. I've confused because I can't get my gynecologist to come up as a provider, yet she's at Cleveland Clinic which does come up and to my knowledge all doctors at Cleveland Clinic should be together as they are one huge practice. I may not have it long; if I am denied for SSDI then it won't cover me. If I am approved I won't be eligible but I've read there's a transiton program that will cover me. I'm just doing it one step at a time and will figure it out as I need to.
I got out of the painful facebook posts. Now it turns out most posts on facebook were from work friends. But better the lonely posts than being hurt. I think that's a bit thing with facebook; you don't think about everyone who is reading and how it might hurt them. With the blog I don't know who is reading and so it's hard for me to avoid saying painful things sometimes, I'm sure. But I try to not hurt people even though I know I fail sometimes.
And now I need to feed my cat who is patiently waiting. She goes through spells of being very hungry and the last 2 days has eaten most or all of 3 cans of food (the other cat helps), an egg, and the last dry food I had (she doesn't even like dry food). It's like feeding a vaccum cleaner.
I think my mom is going to take me down to see my niece Friday. Apparently my niece was very excited with "Aunt Jen visit? Aunt Jen come visit? Aunt Jen is coming?" etc. I've been so out of it I haven't seen her in almost a month. I hate it when that happens because I love her and she truly loves me and time with her is so precious.
Ok, the cat. Don't want her to get too hungry, she might start munching on me.
Copyright 2006 www.masterofirony.blogspot.com
Tuesday, April 03, 2012
Oh, yeah. Diet restrictions. And my day
First, TVP would be textured vegetable protein. (I looked it up). And that reminded me I'm asking for food help but forgetting that I am so used to food restrictions I forget them totally.
Because I am on an MAOI I have a variety of things I can't eat. To make it more complicated the particular MAOI I'm on is not as dangerous as others and as long as I watch my blood pressure if I have any response to something I can have small amounts of this stuff. I have reacted a bit though to I try to avoid them for the most part. There is an amino acid called tyramine that is in foods that interact with the medication. It causes facial flushing mostly but can severely elevate the blood pressure. I've had my BP go to "make sure this isn't normal" levels and then been fine. Even though mine are a lot less likely to cause problems than traditional ones (ask Jean Grey) I still am careful.
Pretty much, I need foods that are healthy and easy but don't contain: soy (this puts a large crimp in my life as I ate a lot of it), aged cheese (I can have mozarrella, ricotta and processed cheese foods), sauerkraut, alcohol, aged meats (pepperoni is something I definitely have reacted to) which is fine since I hate it and it was on my pizza without my ordering it, and probably one or two other things I forget. Banana peels but I don't eat those. Apparently some South American people do and have reacted. I even carefully had Chinese food one day with my niece and while I avoided heavily soy sauced things and she ate most of what did have it, I was fine with the amount I did consume.
I still have to find some food tonight. I had a really rough time sleeping and finally moved to the couch at 3:30 or 4 AM. I did sleep a few hours there, and this afternoon after I got my hair cut I was so extremely tired I fell asleep for a little bit. That never happens and while I hope I didn't mess myself up for tonight I seriously doubt it.
Dr.Brain is back so I should have some response soon about increasing my Seroquel.
And, my mom is taking me to see my niece this week. Apparently my niece is pretty excited. Me too. I haven't seen her in nearly a month because I've not been well enough to drive or to be alone with her. I love that little girl. Like you didn't know that.
Copyright 2006 www.masterofirony.blogspot.com
Because I am on an MAOI I have a variety of things I can't eat. To make it more complicated the particular MAOI I'm on is not as dangerous as others and as long as I watch my blood pressure if I have any response to something I can have small amounts of this stuff. I have reacted a bit though to I try to avoid them for the most part. There is an amino acid called tyramine that is in foods that interact with the medication. It causes facial flushing mostly but can severely elevate the blood pressure. I've had my BP go to "make sure this isn't normal" levels and then been fine. Even though mine are a lot less likely to cause problems than traditional ones (ask Jean Grey) I still am careful.
Pretty much, I need foods that are healthy and easy but don't contain: soy (this puts a large crimp in my life as I ate a lot of it), aged cheese (I can have mozarrella, ricotta and processed cheese foods), sauerkraut, alcohol, aged meats (pepperoni is something I definitely have reacted to) which is fine since I hate it and it was on my pizza without my ordering it, and probably one or two other things I forget. Banana peels but I don't eat those. Apparently some South American people do and have reacted. I even carefully had Chinese food one day with my niece and while I avoided heavily soy sauced things and she ate most of what did have it, I was fine with the amount I did consume.
I still have to find some food tonight. I had a really rough time sleeping and finally moved to the couch at 3:30 or 4 AM. I did sleep a few hours there, and this afternoon after I got my hair cut I was so extremely tired I fell asleep for a little bit. That never happens and while I hope I didn't mess myself up for tonight I seriously doubt it.
Dr.Brain is back so I should have some response soon about increasing my Seroquel.
And, my mom is taking me to see my niece this week. Apparently my niece is pretty excited. Me too. I haven't seen her in nearly a month because I've not been well enough to drive or to be alone with her. I love that little girl. Like you didn't know that.
Copyright 2006 www.masterofirony.blogspot.com
So sensitive
Last week someone I used to work with sent me a facebook message asking what happened, as I had been doing fine when she left her job when I was recovering from surgery. I explained and was touch. Because that was the first time someone bothered. Someone else had expressed sorrow at my leaving but that's it. And I wouldn't care so much but there was a nurse who went off work just about exactly when I did and hasn't returned. And at least once a week my former boss will comment on her post telling her how much she is missed, to please come in and visit, etc. For me, there is silence.
Because I loved where I was so much I never mentioned that I was so hurt that nobody sent me a get-well card. I'd signed plenty for others, but I didn't hear a peep. I was rather hurt then. Later it is understandable that it might be hard to explain the pscyhiatric issues, but I was off for at least a month with pain and surgery and recovery and that seems straight forward enough; someone cut into my belly and poked around and removed things and then people went into my uterus and removed things and then my bladder was cut as well. Nothing to do with psych.
I am sure that I did not leave the greatest impression. For 6 months I was healthy except for a kidney stone that was misread on the scan and called a virus out of lack of answers. Then the entire rest of the time I worked there I had whooping cough and asthma and chemical sensitivities and abdominal pain and bad anemia. Then I went on leave early for pain management, and then I didn't come back. I understand this totally. I also understand that even the kindest people sometimes don't know how to handle psychiatric issues. But the end result is that they've made me feel alone and it gets worse when nobody cares what I say but the other person who left is somehow more acceptable. Support did come in how long they held my job for me and kept my on cheaper benefits. But I think they knew I was too sick to return before I did.
I don't know. Too hard to figure out just now. Tired of hurting with these things.
Copyright 2006 www.masterofirony.blogspot.com
Because I loved where I was so much I never mentioned that I was so hurt that nobody sent me a get-well card. I'd signed plenty for others, but I didn't hear a peep. I was rather hurt then. Later it is understandable that it might be hard to explain the pscyhiatric issues, but I was off for at least a month with pain and surgery and recovery and that seems straight forward enough; someone cut into my belly and poked around and removed things and then people went into my uterus and removed things and then my bladder was cut as well. Nothing to do with psych.
I am sure that I did not leave the greatest impression. For 6 months I was healthy except for a kidney stone that was misread on the scan and called a virus out of lack of answers. Then the entire rest of the time I worked there I had whooping cough and asthma and chemical sensitivities and abdominal pain and bad anemia. Then I went on leave early for pain management, and then I didn't come back. I understand this totally. I also understand that even the kindest people sometimes don't know how to handle psychiatric issues. But the end result is that they've made me feel alone and it gets worse when nobody cares what I say but the other person who left is somehow more acceptable. Support did come in how long they held my job for me and kept my on cheaper benefits. But I think they knew I was too sick to return before I did.
I don't know. Too hard to figure out just now. Tired of hurting with these things.
Copyright 2006 www.masterofirony.blogspot.com
Monday, April 02, 2012
Grieving Anyone?/Food
Today had yet another random surge of tears. Brief but I'm tired of crying. This time it was because of a thermometer cover. I know, not such a sad thing. But it is leftoever from my home health life and that is sad stuff. Because I took the temperature for every patient every day I ran through a lot of probe covers. Sometimes one would break prior to use (the thermometer would go in too hard and rupture it) and those often were shoved in a pocket. That meant that I often had a cover or two floating around the car or my house since they are easy to drop without noticing.
And I left Dr. Mind completely confused. First we discovered I did not have any recollection of homework given last time. Then he had me do something there but even though I asked I didn't ask well enough to determine whether I'm supposed to do something with this now, or just over time. Which means I may well be showing up with no clue about homework again, this time being really special since I have a whole page of writing. I thought I knew what he meant when I left but I was wrong.
Oh well. Gotta "make supper". I got distracted after getting home at 7:30 and meant to make a sandwhich but the bread is frozen so time to reheat something. If you ever need an easy, cheap, hard to damage, fairly nutritious meal might I recommend pierogies with pasta sauce.
Actually, I'm bored with what I make. Maybe someone has an idea. What I've been eating is a lot of mac&cheese with tuna and peas in it (microwave prep); boxed stuffing, canned chicken, mushroom soup and a veggie mixed together (also microwaved); pierogies; frozen dinners; frozen pizza; tuna helper. I also eat a lot of fresh fruit, cereal, sandwiches, junk food, and um, something I forgot. I am not with it enough to use the stove top and using the oven is nerve-wracking. As produce gets fresher I'll be eating more and more of that. I have a George Foreman grill that I can probably use safely and a crockpot. I have an attenion span for preparation that is extremely limited but am pretty good at substituting frozen vegetables for fresh when needed. If you have any ideas that is on that level of preparation I'd love to hear them, especially since this is food stamp shopping week.
Copyright 2006 www.masterofirony.blogspot.com
And I left Dr. Mind completely confused. First we discovered I did not have any recollection of homework given last time. Then he had me do something there but even though I asked I didn't ask well enough to determine whether I'm supposed to do something with this now, or just over time. Which means I may well be showing up with no clue about homework again, this time being really special since I have a whole page of writing. I thought I knew what he meant when I left but I was wrong.
Oh well. Gotta "make supper". I got distracted after getting home at 7:30 and meant to make a sandwhich but the bread is frozen so time to reheat something. If you ever need an easy, cheap, hard to damage, fairly nutritious meal might I recommend pierogies with pasta sauce.
Actually, I'm bored with what I make. Maybe someone has an idea. What I've been eating is a lot of mac&cheese with tuna and peas in it (microwave prep); boxed stuffing, canned chicken, mushroom soup and a veggie mixed together (also microwaved); pierogies; frozen dinners; frozen pizza; tuna helper. I also eat a lot of fresh fruit, cereal, sandwiches, junk food, and um, something I forgot. I am not with it enough to use the stove top and using the oven is nerve-wracking. As produce gets fresher I'll be eating more and more of that. I have a George Foreman grill that I can probably use safely and a crockpot. I have an attenion span for preparation that is extremely limited but am pretty good at substituting frozen vegetables for fresh when needed. If you have any ideas that is on that level of preparation I'd love to hear them, especially since this is food stamp shopping week.
Copyright 2006 www.masterofirony.blogspot.com
And it's 3:11 AM again
I did not take another sleeping pill. I don't like that I was taking this somewhat frequently during the weeks before I went into the hospital suicidal and that much of that obsessive thought at that time was during the nights. Took it today, suicidal thoughts. And that is a side effect. As is depression. And I need to talk to Drl Brain about that because dropping my antidepressant and taking something that can cause depression (she didn't mention this but she knows I have it and prescribed it so I know I'm allowed) doesn't seem good. So I took a day off and will take another dose tomorrow if I don't suddenly fall asleep for 8 hours or so.
Copyright 2006 www.masterofirony.blogspot.com
Copyright 2006 www.masterofirony.blogspot.com
Sunday, April 01, 2012
Caution
I realized you're going to read this and be excited. Don't bother. It is great that I got this sleep. I really hope to repeat it. I also know that sleeping pills do not work well for me and that my bipolar is stronger than them, barring a few days when exhausted. So this is just a break in the torment. Not to be negative, I've just been doing this for 20 years or so.
from my email
Too tired to sign into account. Took sleeping pill out of desperation. It's never done a lot before and I've been afraid of it because mostly it left my groggy and staring into space with bad thoughts on my mind. It took a long time to kick in and I was considering how to spepnd a groggy, sedated, awake night when I did fall asleep. I just got 2 weeks of sleep at once. Would love to sleep more but trying to stay awake a little longer, like dark. Back soon.
Subscribe to:
Posts (Atom)