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.
Friday, October 28, 2016
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.
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