I know I haven't been on here for a while. I actually did have my surgery on the Monday after Thanksgiving. The result of that was I haven't been on my computer in ages. Sitting at my desk was definitely a no-go and even the weight of the laptop on my lap was too much pressure and caused too much pain. I was limited to what I could do on my phone. If you follow this blog and not my Facebook page, you can hop over there and see some updates in the interim.
The surgery went well, apparently. I personally was out cold so I don't remember it. My OB/GYN-surgeon had to really go hunting, the result of my never carrying a child past 11 weeks and my pelvic girdle being very concave. My uterus and ovaries were buried very deep, apparently. She ended up needing to make an 8-inch incision in my lower abdomen and then go spelunking. It took 24 staples to close me up again. Yeah, I'm still trying to not think about that too hard.
I was in the hospital overnight and we found out the hard way that I am one of the few people for whom morphine doesn't work. I was groggy and in terrible pain and had the added frustration of trying to explain to the nurse why all my meds were necessary. She finally got permission to give me the clonazepam and gabapenin, but I never got my Seroquel XR. The orders said no sleeping pills because they wanted me lucid if possible and the medical staff didn't know the difference between regular Seroquel, which is for insomnia, and Seroquel XR, which is an antipsychotic.
Which brings me to the the major takeaway from my surgery: The lack of acknowledgment that mental illnesses REALLY need to be addressed any time a patient is in the hospital or under a doctor's care.
Starting with the pre-admit paperwork and all the way to my leaving the hospital, I had to repeat over and over to each and every person that I have major mental illnesses that get worse when I am in a stressful environment like a hospital. My admit nurse didn't know what schizoeffective disorder was. I had to explain 3 times that yes, I really needed my anxiety meds before going to the hospital for surgery. I only had to tell one person about my allergies and it was flagged in red on my wrist band, but I had to tell every single nurse, CNA, doctor, anesthesiologist, surgical assistant ... everyone ... that I was schizophrenic and the stress and anesthesia had the potential to cause hallucinations, delusions, or a dissociative state. None of them understood that it was a major issue, just as important as any of my drug allergies.
As soon as I am feeling a bit better and can spend more time on the computer, I will be writing a very in-depth letter detailing the importance of integrating physical and mental health in a hospital setting. And I will be sending it to the hospital administrator, the Health Care Group administrator and anyone else I can think of. Things really need to change.
Monday, December 26, 2016
Friday, November 11, 2016
Domino Effect
Well, the past few weeks have been limbo in the worst sense of the word. I was still on hold regarding surgery, which was making me anxious and depressed, and the lead-up to the election was the worst kind of stressor. It is all just a blur, thank heavens. I know I was really close to suicidal several times but hopefully I am past that.
Regarding the election - well, the worst possible thing happened. I still can't spend much time on social media because of the doom and gloom, rants, predictions, talking heads telling us how we're all going to die (or so it seems), and the occasional misinterpreted quote that just fans the flames. I will sneak on to see what my closest friends have posted and to get the latest on all the cute, fuzzy animal pages I follow and that's about it. I just don't have the strength right now to think about what the future may hold.
Regarding the surgery - on Thursday my OB/GYN Dr. Welsh called and said that she had managed to talk with my other health providers and she was confident that the surgery was a good idea. And I lucked out. No one wanted to have surgery the Monday after Thanksgiving so I only have to wait about 2 weeks instead of the usual 2 months.
My whole limbo state was a domino effect. I would see something on the news about the election and it would trigger my anxiety. I would tense up and that would make my shoulders and neck hurt. The pain would make me hunch over, which would make the muscles and cartilage in my ribs hurt. Then I would try to stretch everything out by leaning back, and that would trigger the pain in my pelvic area. Or it would start with the pelvic pain and work upward. I just couldn't win.
And that is why I am hopeful about the surgery. It won't get rid of all the dominoes, but it will remove some of them and will hopefully let me break the cycle. And if I can be in less physical pain, then I can take fewer pain meds and I won't feel so groggy and dizzy. I would be able to do my yoga stretches again (I haven't been able to do yoga for 2 months. Every time I try, my lady parts let me know that they are VERY unhappy) and that brings down my anxiety. If I'm not hunching over my midsection, then my ribs don't get so painful I feel like they're trying to puncture a lung. The shoulder and neck thing is common to my Fibromyalgia, but if I can stay calm and can do my stretches, that stays under control.
Here's to hoping we can get rid of those dominoes.
Regarding the election - well, the worst possible thing happened. I still can't spend much time on social media because of the doom and gloom, rants, predictions, talking heads telling us how we're all going to die (or so it seems), and the occasional misinterpreted quote that just fans the flames. I will sneak on to see what my closest friends have posted and to get the latest on all the cute, fuzzy animal pages I follow and that's about it. I just don't have the strength right now to think about what the future may hold.
Regarding the surgery - on Thursday my OB/GYN Dr. Welsh called and said that she had managed to talk with my other health providers and she was confident that the surgery was a good idea. And I lucked out. No one wanted to have surgery the Monday after Thanksgiving so I only have to wait about 2 weeks instead of the usual 2 months.
My whole limbo state was a domino effect. I would see something on the news about the election and it would trigger my anxiety. I would tense up and that would make my shoulders and neck hurt. The pain would make me hunch over, which would make the muscles and cartilage in my ribs hurt. Then I would try to stretch everything out by leaning back, and that would trigger the pain in my pelvic area. Or it would start with the pelvic pain and work upward. I just couldn't win.
And that is why I am hopeful about the surgery. It won't get rid of all the dominoes, but it will remove some of them and will hopefully let me break the cycle. And if I can be in less physical pain, then I can take fewer pain meds and I won't feel so groggy and dizzy. I would be able to do my yoga stretches again (I haven't been able to do yoga for 2 months. Every time I try, my lady parts let me know that they are VERY unhappy) and that brings down my anxiety. If I'm not hunching over my midsection, then my ribs don't get so painful I feel like they're trying to puncture a lung. The shoulder and neck thing is common to my Fibromyalgia, but if I can stay calm and can do my stretches, that stays under control.
Here's to hoping we can get rid of those dominoes.
Friday, October 28, 2016
Interlude
OK, we're going to take a break from the agonizing and agony and suicidal thoughts and all that stuff. Why? Because my voices said something beautiful to me today and I'm still sniffling.
Yes, there is crazy talk ahead. You have been warned:
I have several voices that have been constants throughout my life. Sometimes they are very active. Sometimes they are quiet. Sometimes they have "friends". Sometimes they are joined by an evil peanut gallery, which they help me get rid of. Sometimes they talk to me. Sometimes they talk to each other. They are demons in my head that I have grown to know and understand.
Well, there is one who greets me every morning with a comment to the others: "Isn't she beautiful?" It baffles me, because I have NEVER considered myself beautiful. I have been cute at times. I might go so far as a mousy pretty when I was younger. I have been able to achieve stunning on occasion when I deck myself out for a black tie event. But stunning isn't beautiful. I just don't have it.
Well, tonight I was going through my usual evening routine of brushing my teeth and washing my face. I always look in the mirror as little as possible when I do this. I have discolorations and scarring all along my chin and neck and up my cheeks from past psoriasis flares. I have a very short buzz cut and you can see the same kind of scars on my scalp, as well as a few larger scars where a very scared cat climbed over my head. There are new scars and old scars on my shoulders, my arms, my chest, my back, and my face from dermotillomania, gouging my skin with my fingernails when I am agitated or anxious. It is part of the trichotillomania - the compulsive hair pulling - that is the main reason my hair is buzzed off. The only part of myself I can stand to look at is my eyes. I have always thought they were pretty, but they are always hidden behind glasses.
Well, tonight, as I was starting to wash my face, my morning gentleman started a conversation with another voice. "Isn't she just beautiful?" The other one was noncommittal, and so he went into detail. He said he loved my head and the fact that it shows the marks (scars) of me fearlessly giving love to another creature. He said my brain was incredible, too, and he loves hearing me think about deep and wonderful things. But most of all, he said, he loved my scars. "Each one, my dear, is a mark of your pain. They show the cracks in your soul. They reveal that you are in pain but still show yourself to the world."
By this time I was sobbing, my face dripping from rinsing off the soap. I looked in the mirror - really looked. I still don't see beauty when I look at myself. I don't know if I ever will. But I don't hide my scars. I decided years ago that it wasn't worth it. I would have to cake on a ton of makeup and wear long sleeves. I wear tank tops and everyone can see the scars and sores. The wounds on my face are bared to the world. And that won't change. It may be that only the voices in my head will ever consider me beautiful, but that's OK. I am genuine. I am me. If you don't like it, look away.
And I will never look away again, either. I will face myself in the mirror, no matter how hard it is.
Yes, there is crazy talk ahead. You have been warned:
I have several voices that have been constants throughout my life. Sometimes they are very active. Sometimes they are quiet. Sometimes they have "friends". Sometimes they are joined by an evil peanut gallery, which they help me get rid of. Sometimes they talk to me. Sometimes they talk to each other. They are demons in my head that I have grown to know and understand.
Well, there is one who greets me every morning with a comment to the others: "Isn't she beautiful?" It baffles me, because I have NEVER considered myself beautiful. I have been cute at times. I might go so far as a mousy pretty when I was younger. I have been able to achieve stunning on occasion when I deck myself out for a black tie event. But stunning isn't beautiful. I just don't have it.
Well, tonight I was going through my usual evening routine of brushing my teeth and washing my face. I always look in the mirror as little as possible when I do this. I have discolorations and scarring all along my chin and neck and up my cheeks from past psoriasis flares. I have a very short buzz cut and you can see the same kind of scars on my scalp, as well as a few larger scars where a very scared cat climbed over my head. There are new scars and old scars on my shoulders, my arms, my chest, my back, and my face from dermotillomania, gouging my skin with my fingernails when I am agitated or anxious. It is part of the trichotillomania - the compulsive hair pulling - that is the main reason my hair is buzzed off. The only part of myself I can stand to look at is my eyes. I have always thought they were pretty, but they are always hidden behind glasses.
Well, tonight, as I was starting to wash my face, my morning gentleman started a conversation with another voice. "Isn't she just beautiful?" The other one was noncommittal, and so he went into detail. He said he loved my head and the fact that it shows the marks (scars) of me fearlessly giving love to another creature. He said my brain was incredible, too, and he loves hearing me think about deep and wonderful things. But most of all, he said, he loved my scars. "Each one, my dear, is a mark of your pain. They show the cracks in your soul. They reveal that you are in pain but still show yourself to the world."
By this time I was sobbing, my face dripping from rinsing off the soap. I looked in the mirror - really looked. I still don't see beauty when I look at myself. I don't know if I ever will. But I don't hide my scars. I decided years ago that it wasn't worth it. I would have to cake on a ton of makeup and wear long sleeves. I wear tank tops and everyone can see the scars and sores. The wounds on my face are bared to the world. And that won't change. It may be that only the voices in my head will ever consider me beautiful, but that's OK. I am genuine. I am me. If you don't like it, look away.
And I will never look away again, either. I will face myself in the mirror, no matter how hard it is.
Thursday, October 27, 2016
Holding On
I guess I have strong fingernails, because I'm still hanging on.
On Tuesday, my mom came with me for a consult with Dr. Welsh, my OB/GYN. She agreed that I was in pain and something needed to be done. However, she explained that she is not completely convinced that the fibroids are the cause and she doesn't want to put me through major surgery - I've never had a vaginal birth so she would have to make an incision in my abdomen to do a hysterectomy - if it won't fix things. She actually called my primary physician, Dr. Woolley, and talked to him about my situation. She is willing to go ahead with the surgery if I want to, but she also wants me to talk to my Psychiatrist, Dr. Nielsen, about possible psychiatric side effects to a surgery-induced menopause, the pain and restrictions of the post-op recovery.
I am impressed and reassured that my doctors are talking to each other and trying to get to the bottom things. My only major concern is that doctors by nature tend to be single-cause oriented. I am of a strong opinion that my pain and exhaustion are caused by multiple problems. I have no doubt something uterus-oriented is causing me major pain. If not the fibroids, then possible scar tissue from past endometriosis. I also think that my costocondritis has been overlooked as a cause for the severe pain in my sides and back. For instance, I could be unconsciously hunching over because of pelvic pain and it causes my ribs to compress and become inflamed.
My next appointment with Dr. Nielsen is on November 9. I was going to try to move it up, but I decided to use the time to gather more info. I have started a pain log. I enter in when I take pain meds, amounts, etc. I also enter in any notable pain events, with location, type of pain, and pain level. Hopefully it will yield some answers.
On Tuesday, my mom came with me for a consult with Dr. Welsh, my OB/GYN. She agreed that I was in pain and something needed to be done. However, she explained that she is not completely convinced that the fibroids are the cause and she doesn't want to put me through major surgery - I've never had a vaginal birth so she would have to make an incision in my abdomen to do a hysterectomy - if it won't fix things. She actually called my primary physician, Dr. Woolley, and talked to him about my situation. She is willing to go ahead with the surgery if I want to, but she also wants me to talk to my Psychiatrist, Dr. Nielsen, about possible psychiatric side effects to a surgery-induced menopause, the pain and restrictions of the post-op recovery.
I am impressed and reassured that my doctors are talking to each other and trying to get to the bottom things. My only major concern is that doctors by nature tend to be single-cause oriented. I am of a strong opinion that my pain and exhaustion are caused by multiple problems. I have no doubt something uterus-oriented is causing me major pain. If not the fibroids, then possible scar tissue from past endometriosis. I also think that my costocondritis has been overlooked as a cause for the severe pain in my sides and back. For instance, I could be unconsciously hunching over because of pelvic pain and it causes my ribs to compress and become inflamed.
My next appointment with Dr. Nielsen is on November 9. I was going to try to move it up, but I decided to use the time to gather more info. I have started a pain log. I enter in when I take pain meds, amounts, etc. I also enter in any notable pain events, with location, type of pain, and pain level. Hopefully it will yield some answers.
Sunday, October 23, 2016
Past The Edge
I almost killed myself today. I have gotten past the edge of my endurance. I am in pain. I am sick from the extra meds I'm taking to try to bring the pain down. I am exhausted. I have lost the will to push through it.
It has been more than 2 months since the severe pain started. The ER visit with the pain at a 9 to 10 was on September 4. And I still have no answers. It has taken weeks to get each tests done, which is beyond frustrating because I know all each order needs is a STAT from the doctor and it gets done within 48 hours. And then it is taking days or longer to hear back on the results and what they may or may not mean.
I have no idea of knowing what my doctors' schedules are like or who else might have severe problems, but if I myself had a patient in my office with pain that severe, that would fade only to a 6 and then spike again, I would bending over backward to find the cause. I would never send them home without some method of pain management. I would never make them wait days or weeks to get tests done. All of my warning signs would be going off and I would make sure the reason was found ASAP.
But I'm not my doctors, and I'm still in limbo. I had the pelvic ultrasound this past Tuesday and even I could see that the uterus was deformed. The pain when the tech would press on it was extreme, to the point that only her quick move with the trash can kept me from vomiting on her shoes. The test results were posted by the end of the day and I called my OB/GYN's office so they would know it was there.
I missed the the next day because she just happened to call while I was in with my therapist. The message was short and unhelpful. I called back and left a message for her that emphasized the pain and asking for a call back. That was Wednesday at about 3:30 p.m. I never got a call back.
I hit "Fuck This" mode on Friday evening. Saturday I woke up feeling better, so I went ahead and made a trip to the grocery store. It turns out I was only sublimating the pain and it was still there. I almost passed out in the middle of the store and I barely made it home. I am still exhausted from it.
Today I just didn't have it in me to fight the exhaustion. I took a nap early, then ended up going in for another nap in the early evening. And that's when I went over the edge. I just lay there, too tired to move, to cry, to do anything. I had a hot poker through my lower abdomen that just throbbed and wouldn't stopped. All of the logic and even the voices that usually stop my suicidal thoughts weren't there. None of my stop signs were relevant. I hurt. And I couldn't stand it any more. And nothing else mattered.
I was thinking that the bed was the perfect place to slit my wrists. The blood would soak into the bedding and the memory foam pad and not make a huge mess. It wouldn't be as traumatic as finding a bathroom slathered with blood. I thought about how cathartic it would be to finally let the blood flow, that beautiful dark red color soaking into the white sheets. And it would fade. The pain would finally go away.
What stopped me? There was nothing I could think of in my bedroom that was sharp enough. I have some scissors, but those were old and dull. I no longer keep a knife by my bed like I did when I lived in LA and when nieces and nephews started visiting I put my knife collection in storage. I would have to go out to the laundry room or the garage to get a razor blade, and I was just too exhausted to go that far.
As I sat down to write this, I noticed my Grandpa's old pocket knife on my desk. I had completely forgotten it was there. I have cleaned it up and it is now razor sharp. I started sobbing as I picked it up and took it out to the garage.
Tomorrow my first step will be calling both of my doctors again. I will be sure they know how bad it really is. And I will let myself rest. And I will try to find some strength left in this poor camel whose back broke months ago.
It has been more than 2 months since the severe pain started. The ER visit with the pain at a 9 to 10 was on September 4. And I still have no answers. It has taken weeks to get each tests done, which is beyond frustrating because I know all each order needs is a STAT from the doctor and it gets done within 48 hours. And then it is taking days or longer to hear back on the results and what they may or may not mean.
I have no idea of knowing what my doctors' schedules are like or who else might have severe problems, but if I myself had a patient in my office with pain that severe, that would fade only to a 6 and then spike again, I would bending over backward to find the cause. I would never send them home without some method of pain management. I would never make them wait days or weeks to get tests done. All of my warning signs would be going off and I would make sure the reason was found ASAP.
But I'm not my doctors, and I'm still in limbo. I had the pelvic ultrasound this past Tuesday and even I could see that the uterus was deformed. The pain when the tech would press on it was extreme, to the point that only her quick move with the trash can kept me from vomiting on her shoes. The test results were posted by the end of the day and I called my OB/GYN's office so they would know it was there.
I missed the the next day because she just happened to call while I was in with my therapist. The message was short and unhelpful. I called back and left a message for her that emphasized the pain and asking for a call back. That was Wednesday at about 3:30 p.m. I never got a call back.
I hit "Fuck This" mode on Friday evening. Saturday I woke up feeling better, so I went ahead and made a trip to the grocery store. It turns out I was only sublimating the pain and it was still there. I almost passed out in the middle of the store and I barely made it home. I am still exhausted from it.
Today I just didn't have it in me to fight the exhaustion. I took a nap early, then ended up going in for another nap in the early evening. And that's when I went over the edge. I just lay there, too tired to move, to cry, to do anything. I had a hot poker through my lower abdomen that just throbbed and wouldn't stopped. All of the logic and even the voices that usually stop my suicidal thoughts weren't there. None of my stop signs were relevant. I hurt. And I couldn't stand it any more. And nothing else mattered.
I was thinking that the bed was the perfect place to slit my wrists. The blood would soak into the bedding and the memory foam pad and not make a huge mess. It wouldn't be as traumatic as finding a bathroom slathered with blood. I thought about how cathartic it would be to finally let the blood flow, that beautiful dark red color soaking into the white sheets. And it would fade. The pain would finally go away.
What stopped me? There was nothing I could think of in my bedroom that was sharp enough. I have some scissors, but those were old and dull. I no longer keep a knife by my bed like I did when I lived in LA and when nieces and nephews started visiting I put my knife collection in storage. I would have to go out to the laundry room or the garage to get a razor blade, and I was just too exhausted to go that far.
As I sat down to write this, I noticed my Grandpa's old pocket knife on my desk. I had completely forgotten it was there. I have cleaned it up and it is now razor sharp. I started sobbing as I picked it up and took it out to the garage.
Tomorrow my first step will be calling both of my doctors again. I will be sure they know how bad it really is. And I will let myself rest. And I will try to find some strength left in this poor camel whose back broke months ago.
Monday, October 17, 2016
The Stigma Within The Stigma
OK, I was totally going to make this a video entry, but I am tired and hurting and my brain has the dumb. After three tries I decided to write it out instead.
October is Mental Illness Awareness Month. There have been dozens of wonderful articles posted about Mental Illness in general, breaking the stigma, myths versus facts, and other good information. There have also been dozens of articles and videos about specific Mental Illnesses, what they are really like from someone who has it, and how to support that person.
But I have noticed a pattern in the articles, and it reveals a stigma inside a community that says it is trying to break the stigma.
Most of the articles about specific illnesses have been about depression, followed closely by anxiety disorders. This makes sense, since these are probably the most common. I have also seen a handful of articles on postpartum depression and bipolar disorder. There have also been quite a few on eating disorders and addiction, and I have even seen three on borderline personality disorder. There are articles on the different forms of self harm and how to spot the warning signs of someone who is suicidal.
I have yet to see a single article on schizophrenia. Not one.
This is a trend that I have noticed before. Unless I am looking at a web page specifically dedicated to schizophrenia awareness, it just isn't talked about. Once every blue moon something pops up on the research page of the National Institute of Mental Health or in NAMI's feed, but that is all. Those articles about people's stories, how to deal with it, how to help someone with it, myths and facts, etc. are very few and far between.
It really is a disturbing trend. If ever there were a Mental Illness that needed to be de-stigmatized, it would be schizophrenia. It has been used as a scapegoat for horrible acts and deranged lunatics for as long as it has had a name. This needs to stop - and it has to stop now.
October is Mental Illness Awareness Month. There have been dozens of wonderful articles posted about Mental Illness in general, breaking the stigma, myths versus facts, and other good information. There have also been dozens of articles and videos about specific Mental Illnesses, what they are really like from someone who has it, and how to support that person.
But I have noticed a pattern in the articles, and it reveals a stigma inside a community that says it is trying to break the stigma.
Most of the articles about specific illnesses have been about depression, followed closely by anxiety disorders. This makes sense, since these are probably the most common. I have also seen a handful of articles on postpartum depression and bipolar disorder. There have also been quite a few on eating disorders and addiction, and I have even seen three on borderline personality disorder. There are articles on the different forms of self harm and how to spot the warning signs of someone who is suicidal.
I have yet to see a single article on schizophrenia. Not one.
This is a trend that I have noticed before. Unless I am looking at a web page specifically dedicated to schizophrenia awareness, it just isn't talked about. Once every blue moon something pops up on the research page of the National Institute of Mental Health or in NAMI's feed, but that is all. Those articles about people's stories, how to deal with it, how to help someone with it, myths and facts, etc. are very few and far between.
It really is a disturbing trend. If ever there were a Mental Illness that needed to be de-stigmatized, it would be schizophrenia. It has been used as a scapegoat for horrible acts and deranged lunatics for as long as it has had a name. This needs to stop - and it has to stop now.
Monday, October 10, 2016
Still just waiting
Yeah, I still have no idea what has been making me so sick. I am just waiting ... and waiting ... and waiting ...
It has been almost 2 weeks now since the colonoscopy and my regular doctor still hasn't given me any ideas. After trying to get a call back all last week, I finally got a call from his Medical Assistant on Thursday afternoon telling me the reason he hadn't called was because he still didn't have the results from the gastroenterologist. I managed to stay polite on the phone, but there was steam coming out of my ears for sure. I immediately called the exam center and had them re-send the results. I even gave them the fax number and made sure they had the correct doctor to send it to.
Well, it is now Monday night and still no word. I guess I'm just not a priority.
According to the paperwork they gave me when I left the exam center, the colonoscopy found nothing wrong. I have no idea how that jives with the CT scan results. The pain isn't as bad since they flushed my system like a roto-rooter, which tells me it had to be something colon-related, but I'm hardly an expert. I only have vague ideas of what organs and such are placed where. I know they're all kind of squished in there with everything overlapping and oozing together. That said, the pain is still there, even if it's not as bad. Something has to be wrong, but so far we're just weeding things out. I just want to know what we do next.
I don't remember if I mentioned it before, but I took it upon myself to make an appointment with my OB/GYN. The CT scan showed fibroid tumors and calcified cysts. Considering my family history - my mom went in to the ER with what they thought was a bad appendix and ended up having an ovary removed instead because a cyst had ruptured - I want to make sure it isn't something going really wrong with my useless reproductive organs. I know that pain can kind of echo through the body and I want to cover all bases.
But I'm still waiting. I see my psychiatrist, Dr. Nielsen, tomorrow and he'll be getting an earful of angst, depression, borderline suicidal tendencies, and basically just wanting to break things. Then I see my OB, Dr. Welsh, on Wednesday. Hopefully at some point in there I will hear from my primary physician. I can't handle the waiting any more. I feel like I'm in some kind of pain-filled limbo.
It has been almost 2 weeks now since the colonoscopy and my regular doctor still hasn't given me any ideas. After trying to get a call back all last week, I finally got a call from his Medical Assistant on Thursday afternoon telling me the reason he hadn't called was because he still didn't have the results from the gastroenterologist. I managed to stay polite on the phone, but there was steam coming out of my ears for sure. I immediately called the exam center and had them re-send the results. I even gave them the fax number and made sure they had the correct doctor to send it to.
Well, it is now Monday night and still no word. I guess I'm just not a priority.
According to the paperwork they gave me when I left the exam center, the colonoscopy found nothing wrong. I have no idea how that jives with the CT scan results. The pain isn't as bad since they flushed my system like a roto-rooter, which tells me it had to be something colon-related, but I'm hardly an expert. I only have vague ideas of what organs and such are placed where. I know they're all kind of squished in there with everything overlapping and oozing together. That said, the pain is still there, even if it's not as bad. Something has to be wrong, but so far we're just weeding things out. I just want to know what we do next.
I don't remember if I mentioned it before, but I took it upon myself to make an appointment with my OB/GYN. The CT scan showed fibroid tumors and calcified cysts. Considering my family history - my mom went in to the ER with what they thought was a bad appendix and ended up having an ovary removed instead because a cyst had ruptured - I want to make sure it isn't something going really wrong with my useless reproductive organs. I know that pain can kind of echo through the body and I want to cover all bases.
But I'm still waiting. I see my psychiatrist, Dr. Nielsen, tomorrow and he'll be getting an earful of angst, depression, borderline suicidal tendencies, and basically just wanting to break things. Then I see my OB, Dr. Welsh, on Wednesday. Hopefully at some point in there I will hear from my primary physician. I can't handle the waiting any more. I feel like I'm in some kind of pain-filled limbo.
Saturday, October 1, 2016
Video: Changing the words does no good.
In which I wax poetic - or ramble aimlessly - about how medical facilities are changing the names of mental illness instead of breaking the stigma.
Tuesday, September 20, 2016
Enough, already
I have learned the hard way over the years that there is never a quick fix for anything. But come on! 2 1/2 weeks and I still can't sit up straight and the pain is killing me.
These past couple weeks have brought me closer to suicidal than anything has in years. Apparently having swelling and narrowing of the colon is not something that you can fix fast. I am still on the increased dosage of Tramadol, but that just isn't taking the pain down. And now my back is killing me because I am unconsciously hunching over and it is pulling muscles in my back and ribs. Having constant pain for this long has me depressed and anxious and my tolerance is not there any more.
I had yet another doctor appointment yesterday, this time with my primary physician. He, of course, has been read in on the situation. He explained that since we don't know exactly what is causing the problems - and we won't until they do the colonoscopy - he can't put me on stronger pain meds. Apparently they can cause more problems than they fix. The trick, he said, is to keep the colon working smoothly and any kind of opioid will cause it to jam up instead, which will put pressure on the swollen, painful areas and cause even more pain.
So, we are doing a bunch of other things that hopefully should bring the pain down in a few days, but aren't helping me much right now. I am on MiraLax to keep things going nice a smooth so that the colon doesn't get more irritated. And I am now on 2 different antibiotics. There is no overt indication of infection, but there might be one. And the antibiotics also work as anti-inflammatories, so that should help. I just need to give them a few days to do their work.
In the meantime I am grasping. And I am confused and scared and angry. I am still as stubborn as hell and make myself keep going despite the pain. I still drag my self out of bed, make myself eat breakfast, force myself to get dressed and pretend to do something productive. Because that's what I do. Sitting around sobbing isn't an option. It's not productive. Same with lying in bed all day. If I'm going to be depressed, I'll do it while sipping coffee and reading a book, not curled up with my head under the covers.
On the other hand, I have hit the point several times where the pain is so bad I just can't do it. I am curled up on the couch saying "I can't do this" over and over in my head. It is those times when I consider breaking into my mom's morphine stash and just taking a handful. Either it will bring the pain down so I can sleep, really sleep. Or it will stop the pain altogether and I can SLEEP. All of it, the pain, the depression, the anxiety, the fear, the confusion - all of it will end.
Fortunately I have had something to distract me from those thoughts before they get too overpowering. One of the cats will jump up on me and start purring. I will think about my niece whose birthday is this week and I would miss seeing her blossom into a beautiful young woman. I get a message from one of my wonderful friends just to say hi and to send me virtual hugs. These little things help me hold on just a bit longer.
Hanging on. Still hanging on.
These past couple weeks have brought me closer to suicidal than anything has in years. Apparently having swelling and narrowing of the colon is not something that you can fix fast. I am still on the increased dosage of Tramadol, but that just isn't taking the pain down. And now my back is killing me because I am unconsciously hunching over and it is pulling muscles in my back and ribs. Having constant pain for this long has me depressed and anxious and my tolerance is not there any more.
I had yet another doctor appointment yesterday, this time with my primary physician. He, of course, has been read in on the situation. He explained that since we don't know exactly what is causing the problems - and we won't until they do the colonoscopy - he can't put me on stronger pain meds. Apparently they can cause more problems than they fix. The trick, he said, is to keep the colon working smoothly and any kind of opioid will cause it to jam up instead, which will put pressure on the swollen, painful areas and cause even more pain.
So, we are doing a bunch of other things that hopefully should bring the pain down in a few days, but aren't helping me much right now. I am on MiraLax to keep things going nice a smooth so that the colon doesn't get more irritated. And I am now on 2 different antibiotics. There is no overt indication of infection, but there might be one. And the antibiotics also work as anti-inflammatories, so that should help. I just need to give them a few days to do their work.
In the meantime I am grasping. And I am confused and scared and angry. I am still as stubborn as hell and make myself keep going despite the pain. I still drag my self out of bed, make myself eat breakfast, force myself to get dressed and pretend to do something productive. Because that's what I do. Sitting around sobbing isn't an option. It's not productive. Same with lying in bed all day. If I'm going to be depressed, I'll do it while sipping coffee and reading a book, not curled up with my head under the covers.
On the other hand, I have hit the point several times where the pain is so bad I just can't do it. I am curled up on the couch saying "I can't do this" over and over in my head. It is those times when I consider breaking into my mom's morphine stash and just taking a handful. Either it will bring the pain down so I can sleep, really sleep. Or it will stop the pain altogether and I can SLEEP. All of it, the pain, the depression, the anxiety, the fear, the confusion - all of it will end.
Fortunately I have had something to distract me from those thoughts before they get too overpowering. One of the cats will jump up on me and start purring. I will think about my niece whose birthday is this week and I would miss seeing her blossom into a beautiful young woman. I get a message from one of my wonderful friends just to say hi and to send me virtual hugs. These little things help me hold on just a bit longer.
Hanging on. Still hanging on.
Tuesday, September 13, 2016
Update: Now What?
I finally got some data today on what is causing my physical problems. As always, it is a good news/bad news situation.
First, I had my monthly appointment with my psychologist, Dr. Nielsen. He got a tearful earful on what has been going on. He asked good questions, was pissed off at the ER doc, and reassured me that it wasn't my fault I had no pain management. Yes, I forgot to ask during the doctor appointment last Tuesday, but he said it should have been part of the plan when I told the doctor that my pain was at an 8. Dr. Nielsen is also an MD - he started out his career as an ER doc and got his psych degree later in life - and he said it was OK and safe to increase the dosage of my Tramadol. He said if that didn't work and I still hadn't heard from my regular doctor that he would get me a prescription for Lortab or whatever we felt was needed to control the pain.
Note: the increase has done some good. I still have twinges and some aches, but it is in the tolerable range. We'll see.
After getting home from my appointment with him, I called my regular doctor and left another message. I am impressed with myself that I managed to not sound pissy. Years of customer service jobs still come in handy. I heard back fairly quickly. It turned out that the imaging results never got to his office so they had to make calls and such to get a copy. And here is where the good news/bad news kicks in. There was actually something on the CT scan that can cause my kind of pain. I know it is weird to be excited by that, but I have had far too many tests come back "there is nothing wrong" that I am thrilled to have something show up that isn't "normal." The bad news is, the abnormality is two sections of bowel with thickening in the walls. It doesn't sound like much, but the list of causes don't include anything good.
So, the next step is a colonoscopy (apparently they don't even buy me dinner first) to find out the cause. Then we go from there. My doctor supported the increase in Tramadol dosage and added that he would also be willing to prescribe something stronger if needed. He also put me on MiriLAX to hopefully make by bowels a little less cranky.
By the way, Cranky Bowels would be a great name for a Death Metal cover band.
So, we know something is wrong. Hopefully it was caught early enough to find out what it is and treat it before it gets nasty. I am trying not to dwell on the fact that if that (enter expletive here) ER doctor had done his job and gotten me a CT scan last Sunday we could have found all this out a week ago. But my pain is down and we'll see how that goes. Oh, and my kidneys are still awesome (high 5).
Sunday, September 11, 2016
Pure Willpower
Pain is a funny thing. Not funny ha ha, of course. But strange and unpredictable. You can damage your elbow and feel it in your neck. You can have an ovarian cyst and you feel it up by your gall bladder. The arthritis will flare up in my wrist and it will feel like like the middle of my forearm is on fire. Thanks to the nerves and their strange ways - and mine are stranger than most - you can never really know where the pain is coming from unless it's something obvious like a bone sticking out through your skin.
It has been a week now since my ER visit because of intense pain in my side and nothing has been decided yet. I was sent home with no extra pain meds or even any advice on how to lessen the intensity. My regular doctor did an exam and ordered a CT scan, but he won't see the scan results until sometime tomorrow. He recommended heat to see of that would bring down any inflammation, but I am left with the big questions of where? Where is the pain really coming from? Yes, it hurts on my sides - both of them, by the way - but it also hurts in my back, in my shoulders, and in my pelvis. It is like my nerves are playing a sadistic pinball game and I just can't keep up.
Not only that, but have you ever sat with a heating pad during the summer? Ugh! It leaves me wanting to go sit in the fridge for an hour.
I have been trying to take it easy so as to not aggravate whatever the hell is wrong with me, but stuff needs to get done. I had to drive myself to the CT scan on Friday. On Saturday I had to drive to the store to get two of my prescriptions and a couple of other necessities, such as ginger beer to counteract the nausea that comes with the pain. No matter how bad it hurts, I still have to eat, and that means getting to the kitchen and fixing something. Taking a shower is pure hell, but after sitting with a heating pad I definitely need one.
I am in a place I haven't been in for a long time - running on pure willpower. I so badly just want to collapse on the floor and sob, but that won't do me any good. It will actually make things worse. I feel so sick all I want is to sip the ginger, but I need real food so I force myself to eat and then force myself to keep it down. I am clinging to the hope that tomorrow something will be found and it can be fixed. If nothing is found, I don't know what will happen. I have nothing left. My claws are slipping.
It has been a week now since my ER visit because of intense pain in my side and nothing has been decided yet. I was sent home with no extra pain meds or even any advice on how to lessen the intensity. My regular doctor did an exam and ordered a CT scan, but he won't see the scan results until sometime tomorrow. He recommended heat to see of that would bring down any inflammation, but I am left with the big questions of where? Where is the pain really coming from? Yes, it hurts on my sides - both of them, by the way - but it also hurts in my back, in my shoulders, and in my pelvis. It is like my nerves are playing a sadistic pinball game and I just can't keep up.
Not only that, but have you ever sat with a heating pad during the summer? Ugh! It leaves me wanting to go sit in the fridge for an hour.
I have been trying to take it easy so as to not aggravate whatever the hell is wrong with me, but stuff needs to get done. I had to drive myself to the CT scan on Friday. On Saturday I had to drive to the store to get two of my prescriptions and a couple of other necessities, such as ginger beer to counteract the nausea that comes with the pain. No matter how bad it hurts, I still have to eat, and that means getting to the kitchen and fixing something. Taking a shower is pure hell, but after sitting with a heating pad I definitely need one.
I am in a place I haven't been in for a long time - running on pure willpower. I so badly just want to collapse on the floor and sob, but that won't do me any good. It will actually make things worse. I feel so sick all I want is to sip the ginger, but I need real food so I force myself to eat and then force myself to keep it down. I am clinging to the hope that tomorrow something will be found and it can be fixed. If nothing is found, I don't know what will happen. I have nothing left. My claws are slipping.
Sunday, September 4, 2016
Suicidal? Or just extremely pissed off?
I can't live like this. I really can't. And I am getting really tired of having my pain trivialized.
My body has been under some sort of stress for about a month. I had a period break through the depo shots - a big sign that something bad is going on - and I have been breaking out in cold sweats while doing the simplest things. I have had contact hives off and on. And for the past week I have had progressively worse pain in my right side. I called the doctor's office and made an appointment for the soonest they have. Because of the holiday, the earliest they had was Tuesday. This was Friday. I could last a few more days, right?
Not a chance. This afternoon the pain got so bad that I was dizzy and nauseated. I couldn't take a deep breath and I was sweating like crazy. My Dad was at work so I had to drive myself to the ER. I took my Mom with me for moral support. By the time we got there the pain was a 9 or 10 on the 1 to 10 pain scale and I was holding off an anxiety attack by pure willpower.
They got me in a room and did urine and blood tests. They put in an IV and gave me an extra pain medication and something for nausea. The nurses were great. They got me set up with a warm blanket once the sweats had stopped and they were great about explaining what they were doing with all the wires and such.
The doctor was nice. I'm sure he knows his job. But I really want to beat him with a stick. When he came in, he asked the basic "where does it hurt." Then he said that phrase I really hate: "What took you so long to have this checked out." AAAARGH!!! I explained about the chronic pain and how it's hard to distinguish new pain from old. Then he asked the question I really, really hate: "What do you think it is?" How the fuck should I know? If I knew what was wrong I wouldn't be at the ER!
It took about 2 hours for the tests to come back. My mom was great and she called my dad to keep him in the loop. Then the doctor came back with the test results. He said it was good news. Nothing was wrong. My white blood count was great and no sign of kidney, pancreas, liver, or any other major organ having problems. It was just normal pain.
That was when the full-blown anxiety attack hit. Normal pain? What the fuck is normal pain? I don't care what kind of chronic pain conditions I have, a pain level of 9 or 10 is anything but normal. He told me to follow up with my doctor and he might run more tests if he feels the need. So I'll still be seeing him on Tuesday. Then the nurse disconnected everything, I put my shirt and shoes back on, and I drove myself and my Mom home.
But as I sat there in the ER with wires running from my chest, a bloodpressure cuff on my arm, and a needle stuck in my arm, I just couldn't help but think that I can't live like this. I have already conditioned myself to believe that doctors are useless. I am trying to break that, but this experience just made it a whole lot worse. And if the doctors I am supposed to depend on to take care of me tell me everything is great and it's just "normal" pain - well, that is more than I can deal with. I am pissed. I am exhausted. I hurt. I am still shaking. I still can't breath. I need someone to tell me that something can be done to help me. Because this is more than I can live with.
My body has been under some sort of stress for about a month. I had a period break through the depo shots - a big sign that something bad is going on - and I have been breaking out in cold sweats while doing the simplest things. I have had contact hives off and on. And for the past week I have had progressively worse pain in my right side. I called the doctor's office and made an appointment for the soonest they have. Because of the holiday, the earliest they had was Tuesday. This was Friday. I could last a few more days, right?
Not a chance. This afternoon the pain got so bad that I was dizzy and nauseated. I couldn't take a deep breath and I was sweating like crazy. My Dad was at work so I had to drive myself to the ER. I took my Mom with me for moral support. By the time we got there the pain was a 9 or 10 on the 1 to 10 pain scale and I was holding off an anxiety attack by pure willpower.
They got me in a room and did urine and blood tests. They put in an IV and gave me an extra pain medication and something for nausea. The nurses were great. They got me set up with a warm blanket once the sweats had stopped and they were great about explaining what they were doing with all the wires and such.
The doctor was nice. I'm sure he knows his job. But I really want to beat him with a stick. When he came in, he asked the basic "where does it hurt." Then he said that phrase I really hate: "What took you so long to have this checked out." AAAARGH!!! I explained about the chronic pain and how it's hard to distinguish new pain from old. Then he asked the question I really, really hate: "What do you think it is?" How the fuck should I know? If I knew what was wrong I wouldn't be at the ER!
It took about 2 hours for the tests to come back. My mom was great and she called my dad to keep him in the loop. Then the doctor came back with the test results. He said it was good news. Nothing was wrong. My white blood count was great and no sign of kidney, pancreas, liver, or any other major organ having problems. It was just normal pain.
That was when the full-blown anxiety attack hit. Normal pain? What the fuck is normal pain? I don't care what kind of chronic pain conditions I have, a pain level of 9 or 10 is anything but normal. He told me to follow up with my doctor and he might run more tests if he feels the need. So I'll still be seeing him on Tuesday. Then the nurse disconnected everything, I put my shirt and shoes back on, and I drove myself and my Mom home.
But as I sat there in the ER with wires running from my chest, a bloodpressure cuff on my arm, and a needle stuck in my arm, I just couldn't help but think that I can't live like this. I have already conditioned myself to believe that doctors are useless. I am trying to break that, but this experience just made it a whole lot worse. And if the doctors I am supposed to depend on to take care of me tell me everything is great and it's just "normal" pain - well, that is more than I can deal with. I am pissed. I am exhausted. I hurt. I am still shaking. I still can't breath. I need someone to tell me that something can be done to help me. Because this is more than I can live with.
Friday, August 26, 2016
Ups and Downs
I have been slowly bouncing back from my crash. And, like always, it isn't a nice, neat, steady progression. It has to come in ups and downs and downs and then an up and then a down again - often all in the same day.
Something along the way triggered enough stress to affect my PCOS (poly-cystic ovary syndrome) and trigger a mini period and the hormone changes that go with it. I am on Depo to keep me from having periods at all because the hormone fluctuation were making me downright suicidal - literally - for a week out of the month. Not good. I've been on the Depo for about a year and a half and it has been going well most of the time. I haven't had my system overwhelm it in about 6 months.
Of course, with hormone changes come skin breakouts (I'm 44, damn it, not 16!) and mood swings. I will be down and uncommunicative all morning, then have an up cycle where I get a bunch of projects done, like changing the pictures on my bedroom wall or washing my laundry. Then I'll crash and burn, take a nap, and spend the evening staring at whatever is on Netflix. Oh, and I've gained another 5 pounds. Thanks, hormones. It is bad enough that at least three of my meds can cause weight gain. I obsessively watch what I eat, but it is still creeping up. My primary doctor says he's not too concerned because my blood pressure is good and I don't LOOK like I weigh 217 pounds, but I can feel it on my poor arthritic feet, ankles and knees. I'd hate to think of how heavy I would be if I at only junk food. Yikes!
Anyway, I think I'm pulling past the hormone fluxes. Please let me be getting past it. Last night I had my trichotillomania rear its ugly head. I can't pull my hair, of course, since it is in a buzz cut. But my eyelashes are fair game. It is so frustrating to be sitting there yelling at myself to stop it, but I can't. It's like my physical actions are completely separate from what my brain is telling my body to do. So, I know have almost no eyelashes. Again. And my eyes are sore. Again. And I am frustrated. Again.
So that's my life for the past week or so. Going up. Going down.
Something along the way triggered enough stress to affect my PCOS (poly-cystic ovary syndrome) and trigger a mini period and the hormone changes that go with it. I am on Depo to keep me from having periods at all because the hormone fluctuation were making me downright suicidal - literally - for a week out of the month. Not good. I've been on the Depo for about a year and a half and it has been going well most of the time. I haven't had my system overwhelm it in about 6 months.
Of course, with hormone changes come skin breakouts (I'm 44, damn it, not 16!) and mood swings. I will be down and uncommunicative all morning, then have an up cycle where I get a bunch of projects done, like changing the pictures on my bedroom wall or washing my laundry. Then I'll crash and burn, take a nap, and spend the evening staring at whatever is on Netflix. Oh, and I've gained another 5 pounds. Thanks, hormones. It is bad enough that at least three of my meds can cause weight gain. I obsessively watch what I eat, but it is still creeping up. My primary doctor says he's not too concerned because my blood pressure is good and I don't LOOK like I weigh 217 pounds, but I can feel it on my poor arthritic feet, ankles and knees. I'd hate to think of how heavy I would be if I at only junk food. Yikes!
Anyway, I think I'm pulling past the hormone fluxes. Please let me be getting past it. Last night I had my trichotillomania rear its ugly head. I can't pull my hair, of course, since it is in a buzz cut. But my eyelashes are fair game. It is so frustrating to be sitting there yelling at myself to stop it, but I can't. It's like my physical actions are completely separate from what my brain is telling my body to do. So, I know have almost no eyelashes. Again. And my eyes are sore. Again. And I am frustrated. Again.
So that's my life for the past week or so. Going up. Going down.
Sunday, August 21, 2016
Crash Day
I have had a streak of good days. I have had energy. I have been able to think straight. I got some projects done and did yoga 4 days in a row. It was wonderful.
The only downside was that nagging knowledge that it wouldn't last. Good days are wonderful, but they are always followed by a crash.
This morning I thought I was still riding the good wave. I got up a bit before 10 and thought maybe I would head to the grocery store after my morning coffee kicked in. I did my usual morning things, had breakfast - and crashed. It is what I call a failure to launch. Even with the coffee there is a bone-deep exhaustion that I just can't kick.
I ended up going back to bed after breakfast and slept 3 more hours. I had some more coffee and felt a bit better. The nagging pain in my ribs and back were fading (If I do my yoga stretching too many days in a row it triggers my costochondritis) and I felt a little more awake. I played games for a bit and had lunch - and crashed. My arthritis would not fade. It is still doing it now, that deep, severe ache that doesn't move or change whether I'm moving or lying down. I tried to walk it off, but my ankles were full of grating sand and the pain just wouldn't go down. I had to take extra pain meds and then I ended up taking a nap for another two hours.
I got up in time to make dinner on schedule. I ate, crashed in front of the TV (I couldn't focus well enough to read) and fought the desire to go back to bed. I am still fighting it, and my joints are still hurting and I am trying hard to keep the physical crash from turning into a mental one as well.
I guess I can take hope from the fact that I had several good days before the crash instead of the usual one or two. I can hope that it means I am improving. Only time - and a bunch of sleep - will tell.
The only downside was that nagging knowledge that it wouldn't last. Good days are wonderful, but they are always followed by a crash.
This morning I thought I was still riding the good wave. I got up a bit before 10 and thought maybe I would head to the grocery store after my morning coffee kicked in. I did my usual morning things, had breakfast - and crashed. It is what I call a failure to launch. Even with the coffee there is a bone-deep exhaustion that I just can't kick.
I ended up going back to bed after breakfast and slept 3 more hours. I had some more coffee and felt a bit better. The nagging pain in my ribs and back were fading (If I do my yoga stretching too many days in a row it triggers my costochondritis) and I felt a little more awake. I played games for a bit and had lunch - and crashed. My arthritis would not fade. It is still doing it now, that deep, severe ache that doesn't move or change whether I'm moving or lying down. I tried to walk it off, but my ankles were full of grating sand and the pain just wouldn't go down. I had to take extra pain meds and then I ended up taking a nap for another two hours.
I got up in time to make dinner on schedule. I ate, crashed in front of the TV (I couldn't focus well enough to read) and fought the desire to go back to bed. I am still fighting it, and my joints are still hurting and I am trying hard to keep the physical crash from turning into a mental one as well.
I guess I can take hope from the fact that I had several good days before the crash instead of the usual one or two. I can hope that it means I am improving. Only time - and a bunch of sleep - will tell.
Wednesday, August 17, 2016
Video Entry: We need rethink how we see mental illness
Friday, August 12, 2016
No More Tumblr
OK. I was going through my Tumblr and copying posts to this blog so I could cancel my Tumblr account. Well, if you have been paying attention, that came to a standstill. I was triggering and hitting overload from reading the old posts, especially when I would read several at a time. So that project is dead. If it was on Tumblr, it is now officially gone. I know there was some good stuff on there, but I just can't do it.
My brain can't handle looking so closely at the past. So instead we will look forward. Onward and hopefully upward.
My brain can't handle looking so closely at the past. So instead we will look forward. Onward and hopefully upward.
Saturday, July 16, 2016
Left Behind (A Poem)
Left Behind
We found each other, both broken, shadows of ourselves.
Together we clung in the darkness, buttressed against the cold.
Slowly we built ourselves stronger - a pebble here - there a cobble
And we stretched with our new strength, a beautiful arch of shining stone.
But I did not know how to build myself. I could only see the holes in you.
And you took what I gave, and rarely a stone came to the side that was me.
You shone brighter as you took what I had to give
And darkness still shone through my gaps and shattered self.
You grew stronger and brighter as I sagged and waned
And finally you transformed, stones made into wings.
And the wind and light caught you, drawing you away
And my wobbly arch, its keystone ripped away, fell to pieces.
I see you still as you float upon the breeze among the stars
Your smile, your laugh echoes through me as you soar, wings entangled with hers.
I wonder if you see me, a pile of shattered rocks weathered and covered in vines
But in truth I am no more than the cracked pavement beneath your feet.
I try to gain strength from the moss that grows upon my skin.
I try to find solace in the darkness and shadows we once feared.
The vines wrap around me, strangling but also giving support
And so with no help but what would try to destroy me, I build something new.
There will be no shimmering towers or soaring arches for me.
Not even a wall will be built, or even a bench to sit upon.
I have not the strength to rise that high, not without your strength.
I can but crumble further, and offer soil for a flower to grow in the sun.
And then, with the stones and shards that remain, I will shift and turn.
I am pavement still, but not just a cracked sidewalk like all others.
I will make a blossom of stone around my flower, a mosaic of my former self.
And the moss and ivy will hold me together - a hard-earned beauty.
And now, as you fly above, the starlight shimmering on your wings
You will see me, and wonder at the harsh strength of the earth.
We found each other, both broken, shadows of ourselves.
Together we clung in the darkness, buttressed against the cold.
Slowly we built ourselves stronger - a pebble here - there a cobble
And we stretched with our new strength, a beautiful arch of shining stone.
But I did not know how to build myself. I could only see the holes in you.
And you took what I gave, and rarely a stone came to the side that was me.
You shone brighter as you took what I had to give
And darkness still shone through my gaps and shattered self.
You grew stronger and brighter as I sagged and waned
And finally you transformed, stones made into wings.
And the wind and light caught you, drawing you away
And my wobbly arch, its keystone ripped away, fell to pieces.
I see you still as you float upon the breeze among the stars
Your smile, your laugh echoes through me as you soar, wings entangled with hers.
I wonder if you see me, a pile of shattered rocks weathered and covered in vines
But in truth I am no more than the cracked pavement beneath your feet.
I try to gain strength from the moss that grows upon my skin.
I try to find solace in the darkness and shadows we once feared.
The vines wrap around me, strangling but also giving support
And so with no help but what would try to destroy me, I build something new.
There will be no shimmering towers or soaring arches for me.
Not even a wall will be built, or even a bench to sit upon.
I have not the strength to rise that high, not without your strength.
I can but crumble further, and offer soil for a flower to grow in the sun.
And then, with the stones and shards that remain, I will shift and turn.
I am pavement still, but not just a cracked sidewalk like all others.
I will make a blossom of stone around my flower, a mosaic of my former self.
And the moss and ivy will hold me together - a hard-earned beauty.
And now, as you fly above, the starlight shimmering on your wings
You will see me, and wonder at the harsh strength of the earth.
~ Kathryn van Roosendaal
Thursday, July 7, 2016
I'm Not Getting Better
Published to Tumblr February 10, 2016
September 26, 2012. That was the day I finally couldn’t take any more. I left work in the middle of the day and never went back. The straw that broke the camel’s back had actually fallen months before, but being the stubborn Taurus I am I kept crawling forward. Then I just couldn’t any more. I had more than a broken back, I was completely shattered.
I started seeing my psychiatrist very soon after that. It was a good thing, too, because I was suicidal, delusional, stressed, and basically a hot mess. I was very lucky in that the psychiatrist most qualified to handle my combination of mental illnesses donated his time to the Doctor’s Volunteer Clinic. Since I had no insurance - and it took 2 ½ years for my disability claim to go through and for my Medicare to kick in - this was the only way I could see anyone. After about 6 months I started seeing my therapist, Shannon. She is wonderful and she has helped me through a lot.
In the past 3 /12 years, I have seen my psychiatrist about once a month and my therapist every other week. I have been hospitalized twice, once for a psychotic break and once because I was suicidal. We have tried different medications and different therapies and coping strategies. I finally found a regular doctor who understands and knows how to handle my physical illnesses, which are chronic and painful. Looking at the numbers, I should be doing great. I should be well on my way to recovery.
But I’m not. I have days, even weeks, where I feel like I’m doing great. Then something happens and the delusions flood back or I start getting anxious at every little thing. I look back and the good days were pretty much days where I had nothing to stress me. If I push myself - like last week I tried driving several miles on a busy street and having coffee at a coffee shop to test my social anxiety - I will feel OK at the time, but the next day I will be a total mess again.
Yesterday drove home to me just how far I have to come. It was my Dad’s first day back at work after the winter break and my Mom had a doctor’s appointment. She can’t drive, so I had to take her. This is nothing new, nothing I haven’t done before, but it always causes me stress. Yesterday I got her in the car, got her to the doctor’s office, then I sat down in the waiting room and had an anxiety attack. I was panting and dizzy when she came out and trying to direct her to the car didn’t help one bit. She kept listing to the side and almost falling, and me with my cane almost went to the ground with her. I had to sit in the car for several minutes just breathing before I drove us home. Once I finally got the anxiety calmed down, I had the depression hit harder than it has in quite a while. I ended up just curled up in bed crying.
This is just the beginning of the long months of my Dad working. I am expected to be the adult, and although I thought I had recovered enough to do that, obviously I still can’t. I don’t know what to do. My brain is a mess, I’m hallucinating, and my knees hurt. I have to be able to do this, but I don’t know how.
Struggling to Float
Published to Tumblr February 8, 2016
This is actually the perfect analogy for me - because I don’t float. I had swimming lessons as a kid and it was the most frustrating thing because I had to struggle every moment just to stay on top of the water. The teacher would be right next to me while I did the dead man’s float and she was as frustrated as I was that I would end up in the perfect pose, only about a foot below the surface.
My life is the same way. If I try to just take it easy and float along, I drown. Every single moment of every single day I have to struggle to stay above the surface.
A Needed Reminder
Published to Tumblr February 7, 2016
I needed this reminder today. Sometimes it feels like all I am is a diagnoses of some sort, especially when I have a week with multiple doctor appointments. I sit there in the cold, clinical room and they do the rundown: White female, age 43, single (I have no idea why this is ever relevant), schizophrenia with both positive and negative symptoms, clinical depression, severe anxiety disorder, obsessive compulsive disorder, trichotillomania, chronic pain disorder (possible fibromyalgia syndrome), progressive osteoarthritis, recurring autoimmune reactions (possible systemic lupus erythematosus), Hashimoto’s thyroiditis, Raynaud’s disease, polycystic ovary syndrome, and psoriasis. Then they look at me and ask “so, what is your issue today?” ALL OF IT!
At least when I see my therapist she focuses on me. She never mentions any illness or diagnoses unless I do first. She sees ME. We all need that.
Frantic Today
Published to Tumblr February 2, 2016
One of the most frustrating things about my mix of chronic illnesses is that I will feel fine for days. Sometimes I’ll even feel great. I’ll have a day where the weather makes my arthritis act up, but it doesn’t trigger anything else. There are days where I feel well enough to go shopping and I’ll come home tired and a little anxious, but a quick nap makes me feel better.
Then there are days like today. I had trouble sleeping last night because I was anxious and jittery, and I have no idea why. I am still feeling frantic and I have run my “self diagnostic” and can’t find a reason. I am not in excess pain, which is one common trigger. I don’t have a doctor’s appointment today. My bills are paid. It is an inexplicable flare up.
Not being able to find the cause makes it worse. There are days when I am depressed and can’t find the reason, which makes me even more depressed. The same happens with anxiety. I will go for a week with no schizophrenia symptoms, then I wake up one day unable to communicate and plagued by voices and shadows. And there is no real way to predict when it will happen.
This roller coaster can be deadly.
My Mom Laughed At Me
Published to Tumblr January 27, 2016
Yesterday my mom laughed at me. And I really don’t know why.
I overdid it a bit yesterday. I went out to run an errand and afterward I still felt pretty good so I pushed it and went to the grocery store. That is always a trial: It is a study in sensory overload and is physically exhausting to boot. I got home and rested for a while, but I was still feeling a bit rocky mentally.
My dad was making dinner for him and my mom. I started making dinner for me. My mom was sitting at the kitchen table doing something - I don’t remember what - and she was talking non-stop. The excess of input finally made me overload. I couldn’t remember why I had gone to the pantry and all the background noise was turning into a meaningless buzz. I stepped to the side, put my hands over my ears, closed my eyes, and just stood there taking deep breaths until I felt more stable.
When I took my hands down and opened my eyes, my mom was laughing. Then she commented “I’m not really laughing at you, it’s just that we’re so much alike.”
At that moment I didn’t really comprehend what she said. I was still trying to function. But it sank in and I really didn’t understand. I almost let it pass, but I have been trying to stand up for myself and communicate more, so I told her “If you really knew what was going on with me, what was going on inside my head, you wouldn’t laugh.”
Her response was to repeat: “I’m just laughing because we’re so much alike.” I told her that I really didn’t know what she meant, that her comment made no sense to me. She started to laugh again and then started to say something, but my dad made her stop. He, at least, had noticed that she was causing me distress.
I didn’t push it. I didn’t need to. I had said my piece. But I really don’t understand what she meant. I have no idea how she can see me in the corner with my hands over my ears and eyes closed trying to breathe and find it funny at all. I guess what it really says is that she doesn’t understand me at all.
Patience
I tried to find the artist of this beautiful piece but it seems everyone on the Internet stole it from someone else on the Internet. Anyway, it is a beautiful sentiment put together in a beautiful way. For me, it is a reminder that there is beauty in every season of the year.
Hope
Published to Tumblr January 11, 2016
I saw my regular doctor today to check in on how my chronic pain and autoimmune issues are going. He had a student with him and the student tried that “someone else has it worse than you” line on me. I called him on it. He admitted that he had never really thought that it could be taken as a negative and promised to never use it again.
Then he told me that no matter what, I had to have hope. Just hold on to hope. That I can try to do.
Schizophrenia (A Poem)
Published to Tumblr January 4, 2016
How loud does the music have to be to bring silence?
Is there ever quiet?
Is there ever a moment of peace?
Only what I can touch is real
And even then it moves, changes
And whirls in strange colors and sounds.
How easy it would be to lie down,
To close my eyes and just listen
And let the worlds merge into one.
But I have miles to go before I sleep
And I have many promises to keep.
I will not give up; I cannot give in.
I will stumble on.
By Kathryn van Roosendaal
One Of Those Days
Published to Tumblr January 3, 2016
It’s one of those days where I don’t know why I got out of bed. Except I needed to pee really bad and once I was up I decided I might as well get coffee. I’m still in my pajamas and browsing through social media. Most of it is driving me nuts with the political stuff, Happy New Year crap, and the continuation of the vapid, overdone encouragements that everything in life will be OK. I blame Disney and the multitude of Romantic Comedies for our cultural belief that no matter how bad things get, there is always a happy ending. That is, of course, a bunch of utter bullshit.
On the plus side I think this new blog is going well. I’m a little frustrated with the limitations of a secondary blog: I cannot follow other blogs or reblog directly. I have to post links instead. But I have done the two primary blog thing when I was still working and was running the office Tumblr and logging in and out to switch back and forth between them was a pain in the ass. At least others can follow and reblog this one. I guess that’s all I really need.
It’s dark and gloomy outside and I really want to go back to bed, but the cats have taken it over and I don’t really want to move them. They have that cuteness thing going for them. I guess I’ll stay up. Maybe even get dressed. That might be as far as I’ll get, but it’s something.
Another 365 Days To Go
Published to Tumblr January 1, 2016
I survived the first day of 2016. And thanks to it being a leap year, I have another 365 days to go.
I was actually feeling OK at the end of 2015. I know logically that the changing of the calendar is pretty irrelevant, but there is still a feeling of accomplishment at having survived another trip around the Sun. Then the new year begins and a new long, long road stretches out ahead of me.
I actually had to get off of Facebook earlier today because I had a panic attack at all the well-wishing for a wonderful New Year. 2016 will be great. All will be wonderful. Think happy thoughts and they will come and nothing will go wrong all year long. 2015 was crap, but the new year will be great. It was sickening and just wrong and It made me feel stifled and cramped. My daily routine that keeps me going suddenly feels like a trap. Alarm goes off: time to take pain meds. 1 p.m.: time to eat lunch. Alarm goes off: time to take anxiety meds. Don’t eat anything after 8 p.m. because it interferes with the 9 p.m. meds. I just want to scream. It’s OK if I take things a day at a time, but the thought of 365 days of the same thing is terrifying.
I can’t help but think of Sisyphus, a character in Greek Mythology. He was condemned by the Gods to eternally roll a large stone to the top of a mountain only to have it roll back down so he could start over again. That’s how I feel: my stone has rolled back down to the bottom and I face the very long, hard road back to the top.
Don’t tell me the year will be wonderful. Don’t tell me it will be awful. Don’t tell me it will be anything. Just tell me about today and maybe tomorrow. I can’t think any further than that.
New Year
Published on Tumblr December 31, 2015
Well, it’s time to break out the new calendar.
Well, it’s time to break out the new calendar.
I know this is supposed to be the time of resolutions. It always seems so shallow to me, though. Lose weight. Stop smoking. Go to church more. Read more books. Watch less TV. Go Vegan. I know these may not seem shallow to most people, but to me they are just superficial.
This year I hope to not continue my trend of one stay in B-Med (the Behavioral Medicine wing of the hospital; it’s not proper to call it a psych ward any more) per calendar year.
This year I hope to stay alive until the next one. I’ve been able to stave off the suicidal tendencies so far. Let’s keep that up!
This year I hope to not add to my scars. I have resolved myself to keeping my hair in a buzz cut because I have trouble controlling the trichotillomania, but let’s keep the cutting under control. I’m actually hoping to get some tattoos on my arms where I usually cut to help me resist the impulse.
I don’t know what else to hope for. It is all so out of my control. I could care less if I lose weight or watch less TV or any of that. I just want to live something vaguely resembling a normal life. Unfortunately I think that’s beyond my grasp.
What is in a brain?
Published on Tumblr December 30, 2015
I have known most of my life that my brain works differently than other people’s. I look at things differently. I analyse things differently. I find some things funny that others don’t and vice versa.
But, of course, I couldn’t let anyone know. My early therapy - first when I was diagnosed with depression at age 11 and then again when I was diagnosed with schizophrenia at 19 - was all about learning how to blend in to “normal” society, not how to deal with the mental illness. If you looked and acted OK on the outside, then everything would somehow fall into place on the inside.
Well, that was a bunch of bullshit. Over the years I learned the roles and wore the masks and slowly but surely the inside was falling apart, not coming together. It is probably no surprise, then, that when it finally fell completely apart I was unable to put it back together again. At least not yet. At age 43 I am on disability and living with my parents. I am a virtual shut-in because of my anxiety and physical limitations. And even with a wonderful therapist and a life-saving psychiatrist, I am still having trouble opening up about what really goes on in this brain of mine.
I am hoping this blog will be a start.
Saturday, July 2, 2016
Useless Fucking Platitudes!
Published to Tumblr January 24, 2016
I FUCKING HATE THIS KIND OF HAPPY LITTLE PLATITUDE!!!
I FUCKING HATE THIS KIND OF HAPPY LITTLE PLATITUDE!!!
Who says things will turn out well? I’m not being pessimistic, just realistic. Would you say this to someone who has been diagnosed with terminal cancer or a chronic, debilitating illness? Hell, no. Well, don’t say it to people with a mental illness, either.
Our society has been brainwashed by Disney’s sanitized versions of the old Fairy Tales, romantic comedies, and action movies where the hero always wins. I hate to break this to you, but it rarely works that way. Yes, life has its ups and downs, but there is no guarantee at all that everything is going to turn out great, let alone be the “best”.
Which, of course, brings us around to all these new age crap “healing” groups and trends. If all it took to be healed and happy was positive thinking and rubbing a few crystals I’d be 100%. They are just expensive versions of chain letters.
January 24, 2016
How Do They See Me?
Published to Tumblr January 17, 2016
Sometimes I wonder why I even bother. I try to be open about my illnesses, both physical and mental. I try to communicate. I’m not looking for sympathy, just acknowledgment and maybe some understanding. But it doesn’t happen.
Sometimes I wonder why I even bother. I try to be open about my illnesses, both physical and mental. I try to communicate. I’m not looking for sympathy, just acknowledgment and maybe some understanding. But it doesn’t happen.
A couple of days ago I posted an article on my Facebook page about being open about mental illness. I added a fairly long not about my own illnesses and how hard is has been to come out as schizophrenic. I put it out there and ended up feeling naked and exposed. I have had to resist the urge to delete the post multiple times.
Do you know what? It has been viewed a bunch of times, but no likes and no comments, not even from my closest friends and family. And now my anxiety and paranoia kick in. What do they think of me now? Are they scared of me now? God knows the media has painted an ugly, scary, and wildly incorrect picture of what schizophrenia looks like. But is that how they now see me?
I know it shouldn’t matter how others see me. It only matters what I think of me. But the screaming silence is kicking in the worst parts of my mental illness: Paranoia, doubt that past experiences and supportive conversations were real, feeling separated from the rest of the human race … I’m trying to not let it take over, but it’s hard.
So much for trying to educate people.
I am not my diagnoses
Published to Tumblr January 16, 2016
I really wish people understood this. Once I tell someone I’m schizophrenic they assume the movie version of a paranoid living in a trashy apartment with a foil hat on their head. There are as many types of schizophrenia as there are types of people. It is different for every single person.
I really wish people understood this. Once I tell someone I’m schizophrenic they assume the movie version of a paranoid living in a trashy apartment with a foil hat on their head. There are as many types of schizophrenia as there are types of people. It is different for every single person.
Oh, and that whole foil hat thing is bogus. Remember when we used to wrap the TV’s rabbit ears in foil to boost the signal? Yeah, foil amplifies radio and other types of EM radiation. A foil hat would just help the aliens read your mind - and would probably microwave your brain on top of it. Try parchment paper instead, or a beanie lined with lead.
Monday, January 11, 2016
Where is my support? - Part 1
I have come to the realization that my family really doesn't support me, at least not the way I really need them to. Sure, my parents were perfectly willing to take me into their home and provide food and all that. My dad helps me when I am too stressed to drive and he does the grocery shopping and stuff. Physically, they have provided me with everything I need.
Mentally and emotionally, not so much.
Without even getting into the mental illness I can name several ways they are not supportive or where they downright undermine my emotional needs. I am in constant pain. I have arthritis and fibromyalgia, so my joints and muscles both ache, have stabbing pain, cramp up at random, etc. Then there are the autoimmune disorders that mess with the circulation in my hands and feet, cause me to break out in hives at random intervals, and generally make me miserable. But I can't talk about it - at all. My dad doesn't understand and will just give a generic "sorry you ache today". And my mom: she is an emotional black hole. She has chronic conditions as well and hers is ALWAYS worse. If I mention my ankles hurt and I'm having trouble walking straight, it is an opening for her to start on a rant of everything that is going wrong with her. There is just no way I've found to rein her in without making her all defensive and yes, she will actually pout. She cannot stand to have anyone besides herself be the center of attention. When I got my SSDI approval after almost 3 years of battling for it she gave me maybe 5 minutes before she broke in with "my knees are a mess; they're bone on bone" - the result of x-rays taken a week before. It was not new information, but she just had to change the subject to her. When I told them my doctor thought I might have lupus (so far no confirmation; fingers crossed) her immediate response was that she had kidney failure. This wasn't true. Her doctor said she had some kidney damage but that it was nothing she needed to worry about yet. I also found out later that she went to 3 different doctors because she was convinced that if I had lupus then she must, too.
I also get pretty much no support on the food front. I have a very restricted diet: I cannot tolerate gluten (I have Celiac's disease), any dairy products, any nuts, and the heavier proteins such as beef and pork. My parents will pick up my "special" food if I put it on the shopping list, but they won't fix any of it for me - not that I've asked them too, but it would be nice to have some help when I'm really feeling like crap. Since they won't cook stuff I can eat, I tried cooking for them. But if I make a dish that I can eat, they won't eat it. I have made chicken stir-fry and other dishes that are naturally safe for me to eat, or that need only minor changes. They still won't eat it. On their end, of course, they very rarely fix anything I can eat, and sometimes it borders on abuse. It is bad enough when they come home with 3 types of artisan breads and a package of cookies and leave them on the counter. But when they bake a pizza or my mom fixes traditional lasagna? That is actually painful. Then there are the "we just don't give a damn" meals. Christmas breakfast this year was pancakes, and my mom didn't bother to use the gluten-free flour mix because then the pancakes aren't as fluffy. And you just can't have less-fluffy pancakes, even if it means I am left out. And there were just the 3 of us, so it's not like 12 people got fluffy pancakes and I was left out. It was two with pancakes and one eating cereal. Oh, and Christmas dinner? Ham and scalloped potatoes. They know I can't eat ham. They know I can't eat potatoes fixed that way because of all the dairy. The only part of Christmas dinner that I could eat was the steamed broccoli. Happy fucking holidays.
My parents have me so trained not to talk about how I feel physically that I have a hard time talking about my problems when I go to my doctor. Not good.
Mentally and emotionally, not so much.
Without even getting into the mental illness I can name several ways they are not supportive or where they downright undermine my emotional needs. I am in constant pain. I have arthritis and fibromyalgia, so my joints and muscles both ache, have stabbing pain, cramp up at random, etc. Then there are the autoimmune disorders that mess with the circulation in my hands and feet, cause me to break out in hives at random intervals, and generally make me miserable. But I can't talk about it - at all. My dad doesn't understand and will just give a generic "sorry you ache today". And my mom: she is an emotional black hole. She has chronic conditions as well and hers is ALWAYS worse. If I mention my ankles hurt and I'm having trouble walking straight, it is an opening for her to start on a rant of everything that is going wrong with her. There is just no way I've found to rein her in without making her all defensive and yes, she will actually pout. She cannot stand to have anyone besides herself be the center of attention. When I got my SSDI approval after almost 3 years of battling for it she gave me maybe 5 minutes before she broke in with "my knees are a mess; they're bone on bone" - the result of x-rays taken a week before. It was not new information, but she just had to change the subject to her. When I told them my doctor thought I might have lupus (so far no confirmation; fingers crossed) her immediate response was that she had kidney failure. This wasn't true. Her doctor said she had some kidney damage but that it was nothing she needed to worry about yet. I also found out later that she went to 3 different doctors because she was convinced that if I had lupus then she must, too.
I also get pretty much no support on the food front. I have a very restricted diet: I cannot tolerate gluten (I have Celiac's disease), any dairy products, any nuts, and the heavier proteins such as beef and pork. My parents will pick up my "special" food if I put it on the shopping list, but they won't fix any of it for me - not that I've asked them too, but it would be nice to have some help when I'm really feeling like crap. Since they won't cook stuff I can eat, I tried cooking for them. But if I make a dish that I can eat, they won't eat it. I have made chicken stir-fry and other dishes that are naturally safe for me to eat, or that need only minor changes. They still won't eat it. On their end, of course, they very rarely fix anything I can eat, and sometimes it borders on abuse. It is bad enough when they come home with 3 types of artisan breads and a package of cookies and leave them on the counter. But when they bake a pizza or my mom fixes traditional lasagna? That is actually painful. Then there are the "we just don't give a damn" meals. Christmas breakfast this year was pancakes, and my mom didn't bother to use the gluten-free flour mix because then the pancakes aren't as fluffy. And you just can't have less-fluffy pancakes, even if it means I am left out. And there were just the 3 of us, so it's not like 12 people got fluffy pancakes and I was left out. It was two with pancakes and one eating cereal. Oh, and Christmas dinner? Ham and scalloped potatoes. They know I can't eat ham. They know I can't eat potatoes fixed that way because of all the dairy. The only part of Christmas dinner that I could eat was the steamed broccoli. Happy fucking holidays.
My parents have me so trained not to talk about how I feel physically that I have a hard time talking about my problems when I go to my doctor. Not good.
Tuesday, January 5, 2016
Another fuck up
So I fucked up again and I am trying really hard not to have a massive down-spiral.
Yesterday morning I was doing very poorly. I was having trouble placing my very vivid dreams in the "not real" category and I was touchy and mentally sensitive. I went out to make breakfast and my mom was blocking the kitchen area - it's tiny - and I couldn't deal with the proximity thing. I said I would make breakfast when she had finished making hers and I went back in my room. Then my dad came in and yelled at me, saying my mom had a right to be in the kitchen, too, and why couldn't we both be in there at the same time. I muttered something about being touchy and cranky and he went away.
It was at that point that I realized that my parents aren't understanding or getting the signals I am putting off when I am in distress. Apparently if I am not in total crisis mode, they think I'm doing just fine.
So I tried to open a line of communication. I was having big problems with the verbal communications thing, so I wrote a letter. I explained that I am dealing with a severe mental illness and even if I look fine, I'm not. I tried to described what it's like to try to navigate my world and what my mind actually saw that morning when I went out for breakfast and why it caused such a negative reaction.
Major backfire.
I actually am kind of impressed my my mom's talent for twisting things around, especially since she probably has no idea she is doing it. She sat down with the letter, in tears, and instead of us talking about my issues and what kind of support and understanding I need, I ended up spending 10 minutes reassuring her that I still love her and I'm not going to stop living with them. Then she went on to say that reading my letter made her realize that she also has schizophrenia (her doctors and psychiatrist have already ruled that out. I was there. She has dementia caused my too many medication interactions and overdoses) and so she knows exactly how I feel. (Bullshit!). She then went into the whole history of how she has had the depression for so long and how friends helped her get help and how it runs in the family and cousin Robert had anxiety ... I finally had to cut her off. At that point I was so overwhelmed and pissed at her pre-empting the conversation I just left.
Oh, and I saw my dad with the letter in his hands but he hasn't said a word. I have no idea if he even read it.
So - the result is no change in status except that my mom now has a new "issue" that she can tell everyone about. I have dealt with my mental health issues by myself for most of my life and it looks like I will have to continue to do so. My mom it too focused on herself to see when I need help or support. My dad just wants to ignore what he can. Even my sisters are starting to be no help. When I tried to talk to Kristin she gave me the automatic, non-supportive "that's just how mom is." Nothing else. Everyone else just gives me a "I'm sorry you have to deal with that." It is all still focused on mom and not on me.
I have nowhere to go. I have no one to talk to day by day who will actually listen. I had thought I was making progress with my family, but this has shown me that I have actually failed miserably at communicating my needs to them. I am royally fucked.
Yesterday morning I was doing very poorly. I was having trouble placing my very vivid dreams in the "not real" category and I was touchy and mentally sensitive. I went out to make breakfast and my mom was blocking the kitchen area - it's tiny - and I couldn't deal with the proximity thing. I said I would make breakfast when she had finished making hers and I went back in my room. Then my dad came in and yelled at me, saying my mom had a right to be in the kitchen, too, and why couldn't we both be in there at the same time. I muttered something about being touchy and cranky and he went away.
It was at that point that I realized that my parents aren't understanding or getting the signals I am putting off when I am in distress. Apparently if I am not in total crisis mode, they think I'm doing just fine.
So I tried to open a line of communication. I was having big problems with the verbal communications thing, so I wrote a letter. I explained that I am dealing with a severe mental illness and even if I look fine, I'm not. I tried to described what it's like to try to navigate my world and what my mind actually saw that morning when I went out for breakfast and why it caused such a negative reaction.
Major backfire.
I actually am kind of impressed my my mom's talent for twisting things around, especially since she probably has no idea she is doing it. She sat down with the letter, in tears, and instead of us talking about my issues and what kind of support and understanding I need, I ended up spending 10 minutes reassuring her that I still love her and I'm not going to stop living with them. Then she went on to say that reading my letter made her realize that she also has schizophrenia (her doctors and psychiatrist have already ruled that out. I was there. She has dementia caused my too many medication interactions and overdoses) and so she knows exactly how I feel. (Bullshit!). She then went into the whole history of how she has had the depression for so long and how friends helped her get help and how it runs in the family and cousin Robert had anxiety ... I finally had to cut her off. At that point I was so overwhelmed and pissed at her pre-empting the conversation I just left.
Oh, and I saw my dad with the letter in his hands but he hasn't said a word. I have no idea if he even read it.
So - the result is no change in status except that my mom now has a new "issue" that she can tell everyone about. I have dealt with my mental health issues by myself for most of my life and it looks like I will have to continue to do so. My mom it too focused on herself to see when I need help or support. My dad just wants to ignore what he can. Even my sisters are starting to be no help. When I tried to talk to Kristin she gave me the automatic, non-supportive "that's just how mom is." Nothing else. Everyone else just gives me a "I'm sorry you have to deal with that." It is all still focused on mom and not on me.
I have nowhere to go. I have no one to talk to day by day who will actually listen. I had thought I was making progress with my family, but this has shown me that I have actually failed miserably at communicating my needs to them. I am royally fucked.
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