Astrocytomas

Hi, my name is Sailorgirl. I'm here because im looking for support

#MightyTogether #Astrocytoma

Hi, my name is Sailorgirl. I'm here because im looking for support

#MightyTogether #Astrocytoma

After 25 years at the same pain clinic, I am being forced to discharge myself or taper from a medicine I’ve been on for as long as I’ve been with this doctor for “violating the narcotic agreement” which I’ll now explain. With their full knowledge, I went to a local pain clinic for a referral only to a neurosurgeon to do a pain block that my current pain clinic could not do. I told them I was not there for medicine but for a referral only. Long story short, the next month this doctor calls in prescriptions for me that I mistook for being from my regular pain doctor. I did not or did not even try to fill the “overlapping” meds. Now I have no choice but to find a new pain clinic with this false albatross violation hanging around my neck . Even worse, the only place I can go to is back to that local clinic and now they are saying they will not accept me without a referral from my current pain doctor. Can anyone offer advice? Thanks in advance.

#52SmallThings - Yesterday my sister, family and I laid to rest my best friend and brother-in-law, Eric. We’ve been friends since I was 16 (I’m 40 now) and he married my sister 18 years ago in October of 2001. Needless to say I am devastated. We spent the last 2 years watching him fight a ‘Grade 3 Anaplastic Astrocytoma’ brain tumor. It’s been possibly the worst 2 years of my life. SO... my friend who actually dated him (for about 2 weeks) back in the late 90’s had wanted to go see him in the nursing home after we found out the cancer was terminal, she wanted to help out in any way she could, she loved him (as a friend) blah, blah, blah. Well, she didn’t show up to his wake OR funeral
and when I texted her to see what was up she didn’t even respond. So I sent her a message saying how disappointed I was (she said she was sick but apparently she was so sick she couldn’t answer my texts BUT she could post pics on ‘Snapchat’ of her and her son shopping and swimming, etc., within the past 2 days) and she asked if she could come over last night and while I normally would have been glad to see her out came the word “No.” I was too tired and I couldn’t think straight so I finally spoke up (I’ve been working on setting boundaries with my therapist due to strong abandonment issues) and said numero NO. I’m doing what I need to do and yes I’m angry with you but that doesn’t mean I have to cater to your feelings of guilt and make YOU feel better. It’s time to focus on “numero uno”... ME!! :-)

#52SmallThings - Yesterday my sister, family and I laid to rest my best friend and brother-in-law, Eric. We’ve been friends since I was 16 (I’m 40 now) and he married my sister 18 years ago in October of 2001. Needless to say I am devastated. We spent the last 2 years watching him fight a ‘Grade 3 Anaplastic Astrocytoma’ brain tumor. It’s been possibly the worst 2 years of my life. SO... my friend who actually dated him (for about 2 weeks) back in the late 90’s had wanted to go see him in the nursing home after we found out the cancer was terminal, she wanted to help out in any way she could, she loved him (as a friend) blah, blah, blah. Well, she didn’t show up to his wake OR funeral
and when I texted her to see what was up she didn’t even respond. So I sent her a message saying how disappointed I was (she said she was sick but apparently she was so sick she couldn’t answer my texts BUT she could post pics on ‘Snapchat’ of her and her son shopping and swimming, etc., within the past 2 days) and she asked if she could come over last night and while I normally would have been glad to see her out came the word “No.” I was too tired and I couldn’t think straight so I finally spoke up (I’ve been working on setting boundaries with my therapist due to strong abandonment issues) and said numero NO. I’m doing what I need to do and yes I’m angry with you but that doesn’t mean I have to cater to your feelings of guilt and make YOU feel better. It’s time to focus on “numero uno”... ME!! :-)

I suffer from OCD (OCD) and General #Anxiety Disorder. This means that, in general, my “fight of flight” is always on and I feel like all of my actions are scrutinized all the time by everybody. You see, my Obsessions and Compulsions don’t have a physical component. I don’t count tiles, touch fence posts or anything like that. I worry….a lot. I always feel guilty about something (like boring you with this story). But there are plenty of stories about OCD and Anxiety on the Mighty so I, won’t add another. This story is about a component that is often misunderstood or overlooked, Hyper Responsibility, or what I like to call Superman Syndrome.

I’ve always had this feeling of responsibility for things I can’t control. I avoid news and politics for that reason. But it got worse real fast 6 years ago. My best friend, who lived with my wife and I for 20 years, was diagnosed with Anaplastic #Astrocytoma. He’d been having headaches and nerve issues that was attributed to a back injury he got while serving in the Army.

After he called to tell us his diagnosis from hospital that memorable morning of November 24, 2012, I dropped my phone, burst into tears seeking the comfort of my wife. “I killed my best friend”. I sobbed into my wife’s awaiting shoulder. The reason I gave, was that I didn’t force him to go to the doctor sooner. Logically I knew I couldn’t force anyone to do anything nor can I cure #Cancer. But emotions don’t care about that.

He wanted to continue living with us. And after 20 years of living together, our place was more home to him than anyplace. For a little over a year he underwent radiation and chemotherapy. After that it was basically caring for his needs. For 2 years we cared for him. Everything from organizing his pills to helping him bathe. I never told him how I felt. Nor did I mention it to my wife again. His death was my burden to bear and I didn’t want anyone else being hurt by my lack of action.

In November of 2014, we had to move him to a better care facility. He had gotten to the point where we couldn’t care for him. On Christmas Eve of 2014, he passed away at the ripe old age of 44. At that point, i was ready to confess my sins to everybody. I even tried to turn myself in to the police. I apologized to his parents, my wife, all of his friends and employers. Except for his folks, my wife and a few friends (who knew about my condition) I got a lot of weird looks. To this day, I feel guilty for his passing.

I have healed a bit and moved on for the most part, but that’s not what this is about. This story is to bring awareness to people that feeling responsible for things you can’t control is a part of OCD. And logically, we know we don’t have super strength or super speed. We aren’t perfect. Instead of “Men of Steel” we are, in fact, Men of Rust. Not perfect. Just human.

I suffer from OCD (OCD) and General #Anxiety Disorder. This means that, in general, my “fight of flight” is always on and I feel like all of my actions are scrutinized all the time by everybody. You see, my Obsessions and Compulsions don’t have a physical component. I don’t count tiles, touch fence posts or anything like that. I worry….a lot. I always feel guilty about something (like boring you with this story). But there are plenty of stories about OCD and Anxiety on the Mighty so I, won’t add another. This story is about a component that is often misunderstood or overlooked, Hyper Responsibility, or what I like to call Superman Syndrome.

I’ve always had this feeling of responsibility for things I can’t control. I avoid news and politics for that reason. But it got worse real fast 6 years ago. My best friend, who lived with my wife and I for 20 years, was diagnosed with Anaplastic #Astrocytoma. He’d been having headaches and nerve issues that was attributed to a back injury he got while serving in the Army.

After he called to tell us his diagnosis from hospital that memorable morning of November 24, 2012, I dropped my phone, burst into tears seeking the comfort of my wife. “I killed my best friend”. I sobbed into my wife’s awaiting shoulder. The reason I gave, was that I didn’t force him to go to the doctor sooner. Logically I knew I couldn’t force anyone to do anything nor can I cure #Cancer. But emotions don’t care about that.

He wanted to continue living with us. And after 20 years of living together, our place was more home to him than anyplace. For a little over a year he underwent radiation and chemotherapy. After that it was basically caring for his needs. For 2 years we cared for him. Everything from organizing his pills to helping him bathe. I never told him how I felt. Nor did I mention it to my wife again. His death was my burden to bear and I didn’t want anyone else being hurt by my lack of action.

In November of 2014, we had to move him to a better care facility. He had gotten to the point where we couldn’t care for him. On Christmas Eve of 2014, he passed away at the ripe old age of 44. At that point, i was ready to confess my sins to everybody. I even tried to turn myself in to the police. I apologized to his parents, my wife, all of his friends and employers. Except for his folks, my wife and a few friends (who knew about my condition) I got a lot of weird looks. To this day, I feel guilty for his passing.

I have healed a bit and moved on for the most part, but that’s not what this is about. This story is to bring awareness to people that feeling responsible for things you can’t control is a part of OCD. And logically, we know we don’t have super strength or super speed. We aren’t perfect. Instead of “Men of Steel” we are, in fact, Men of Rust. Not perfect. Just human.

If I walked in the doctors office and told them I had astrocytoma or glioblastoma, some type of brain tumor, the doctors would take pause. I’m sure if I said I have an inoperable brain tumor they would have no problem giving me the pain medication I need or nausea meds. They would listen and help me treat the symptoms I would live with for the rest of my life. Having a causes pressure to build up in your brain of cerebral spinal fluid and can wreck havoc on many systems of the body. The pressure can press on your hypothalamus and cause body temperature control issues. The high CSF can press on the pituitary glad and cause Addison disease type symptoms, low blood pressure, sudden black outs, heart rate issues, several different problems. If I told the doctor I had a large causing all these symptoms the would help gladly.
So why is it when I go to a doctor and say my brain thinks I have a large and produces the extra csf and causes me all the exact same symptoms above I get no help?
Having IH or PTC is just that. My brain is constantly trying to fight and conquer this tumor all the time but there is no tumor. My brain honestly thinks there is a large tumor somewhere up there and is always in a fight or flight response against it.
All of us with this condition should be treated the same as those with an inoperable tumor but we’re not. Most the time our weight is blamed when in reality the csf build up causing pressure on our hypothalamus could be the very cause of the unlossable unexplained weight gain and is not the cause but an effect of the condition its self. I lost 75lbs and my condition worsened a lot and this has happened with several of us. All of us IH patient should be given better treatment than we are. Hopefully one day doctors will better understand the fact we don’t have daily headaches but head pain and need treatment just the same for it.
IHope for a cure. I hope to be heard and one day I hope to be helped effectively.
IH love to you all 💙💚💙💚💙💚

If I walked in the doctors office and told them I had astrocytoma or glioblastoma, some type of brain tumor, the doctors would take pause. I’m sure if I said I have an inoperable brain tumor they would have no problem giving me the pain medication I need or nausea meds. They would listen and help me treat the symptoms I would live with for the rest of my life. Having a causes pressure to build up in your brain of cerebral spinal fluid and can wreck havoc on many systems of the body. The pressure can press on your hypothalamus and cause body temperature control issues. The high CSF can press on the pituitary glad and cause Addison disease type symptoms, low blood pressure, sudden black outs, heart rate issues, several different problems. If I told the doctor I had a large causing all these symptoms the would help gladly.
So why is it when I go to a doctor and say my brain thinks I have a large and produces the extra csf and causes me all the exact same symptoms above I get no help?
Having IH or PTC is just that. My brain is constantly trying to fight and conquer this tumor all the time but there is no tumor. My brain honestly thinks there is a large tumor somewhere up there and is always in a fight or flight response against it.
All of us with this condition should be treated the same as those with an inoperable tumor but we’re not. Most the time our weight is blamed when in reality the csf build up causing pressure on our hypothalamus could be the very cause of the unlossable unexplained weight gain and is not the cause but an effect of the condition its self. I lost 75lbs and my condition worsened a lot and this has happened with several of us. All of us IH patient should be given better treatment than we are. Hopefully one day doctors will better understand the fact we don’t have daily headaches but head pain and need treatment just the same for it.
IHope for a cure. I hope to be heard and one day I hope to be helped effectively.
IH love to you all 💙💚💙💚💙💚