Group photo
Author:
WHITECAT19's Photo WHITECAT19 SparkPoints: (148,011)
Fitness Minutes: (35,202)
Posts: 13,772
1/24/21 11:35 P

My SparkPage
Send Private Message
Reply

I don't blame you. Everything is profit-driven. The welfare of the patient is secondary at best. One of many things that are upside-down in our world!

emoticon

The Lord upholds all who fall, and raises up all who are bowed down. Psalm 145:14

A monk was once asked: What do you do there in the monastery? He replied: We fall and get up, fall and get up, fall and get up again. - Tito Colliander

The Jesus Prayer helps to lift the whole life, body and soul, to a level where . . . the world is sought and known in the beauty of God, not God in the beauty of the world. - Mother Maria of Normanby


 Pounds lost: 44.0 
0
11.5
23
34.5
46
TEXASLYNN's Photo TEXASLYNN Posts: 4,004
1/24/21 6:52 P

My SparkPage
Send Private Message
Reply
It's sad to say but my TBI has left me without a lot of trust for anyone, particularly doctors, lawyers, and insurance companies. If someone presents in an ER following an auto accident, you'd think the providers would have checked for a concussion at the very least. A PET scan could have saved me a lot of grief and misery.

Jesus Christ is Lord!

Make your words sweet; you may have to eat them!

No More Homeless Pets

On the Eighth Day God Created Texas

Stamp Out Puppy Mills


 current weight: 258.0 
274
242.7
211.4
180.1
148.8
WHITECAT19's Photo WHITECAT19 SparkPoints: (148,011)
Fitness Minutes: (35,202)
Posts: 13,772
8/29/20 12:17 P

My SparkPage
Send Private Message
Reply

Yep! I am turning 69 this year. I have endured a lifetime of being blown off by doctors who did not believe me most of the time. I am really tired. I have a PCP now who mostly listens to me. But specialists like that are few and far between. Their egos tend to be too big for them to be able to hear us.

Sigh.

The Lord upholds all who fall, and raises up all who are bowed down. Psalm 145:14

A monk was once asked: What do you do there in the monastery? He replied: We fall and get up, fall and get up, fall and get up again. - Tito Colliander

The Jesus Prayer helps to lift the whole life, body and soul, to a level where . . . the world is sought and known in the beauty of God, not God in the beauty of the world. - Mother Maria of Normanby


 Pounds lost: 44.0 
0
11.5
23
34.5
46
RONDARC's Photo RONDARC SparkPoints: (217,378)
Fitness Minutes: (183,609)
Posts: 11,372
8/28/20 6:02 P

My SparkPage
Send Private Message
Reply
That's just awful! But yes, we are treated very differently.......

~~ Ronda~~

If you make up your mind to be happy there's no reason why you shouldn't have a fairly good time.

Border Collie Lovers - Team Leader
Lets Go Hiking - Team Leader
Dog Lovers Team - Team Leader
SP Class of June 3-9, 2007 - Team leader
Our Herding Dogs - Team Leader


686 Maintenance Weeks
0
175
350
525
700
WHITECAT19's Photo WHITECAT19 SparkPoints: (148,011)
Fitness Minutes: (35,202)
Posts: 13,772
8/15/20 5:16 P

My SparkPage
Send Private Message
Reply

I am so sorry! I know there are thousands more stories like this. My story about myself is similar, only with less serious consequences. And there are probably millions of women who are NEVER diagnosed, and who simply trust their doctors. Some of them die prematurely and with great suffering.

One of the problems is that, until recently, nearly ALL medical studies were done only on men. So evaluations were based on how a man's body would behave. Not scientific at all! But, mostly, doctors (including some women doctors) have been conditioned to respond differently to men and women. This has been going on for centuries.

Many years ago I read an article in a medical journal. The authors had reviewed hundreds of articles in various medical journals to see what terminology was used to refer to the reports of their patients about their symptoms. In nearly every case, men's reports were referred to as "symptoms." Women's reports were referred to as "complaints."

This speaks volumes!

We are still in the Dark Ages, Ladies!

emoticon

The Lord upholds all who fall, and raises up all who are bowed down. Psalm 145:14

A monk was once asked: What do you do there in the monastery? He replied: We fall and get up, fall and get up, fall and get up again. - Tito Colliander

The Jesus Prayer helps to lift the whole life, body and soul, to a level where . . . the world is sought and known in the beauty of God, not God in the beauty of the world. - Mother Maria of Normanby


 Pounds lost: 44.0 
0
11.5
23
34.5
46
RONDARC's Photo RONDARC SparkPoints: (217,378)
Fitness Minutes: (183,609)
Posts: 11,372
8/15/20 4:46 P

My SparkPage
Send Private Message
Reply
WHITECAT19, I am so sorry you had to go through that...... emoticon I believe gender has a lot to do with how we are treated. Male doctors are quick to dismiss us.

My husbands grandmother had the same thing happen to her in the 60's. For a year the doctors treated for menopause when it was a brain tumor.......

Even me, with headaches, vision loss. losing function/strength in my arm and not being able to keep food down at all, I was told by a male doctor it was allergies or migraines and given allergy meds, sinus spray & nausea pills when I went to emergency. When the nurse was releasing me, he said he didn't agree with the Rx's.....

For almost a month I survived on Gatorade & a banana a day. Only able to eat a bite every so often.

A few weeks later I had to go back to emergency because I was almost out of the nausea pills, I got a female doctor this time who told me it could be migraines, MS or a brain tumor. Because of my age, 32 at the time, she wanted to rule out brain tumor. She said it was uncommon for someone my age to have a brain tumor, so she did a CAT scan and found a golf ball sized tumor at the base of my skull (by my brain stem). I had surgery 3 days later!





~~ Ronda~~

If you make up your mind to be happy there's no reason why you shouldn't have a fairly good time.

Border Collie Lovers - Team Leader
Lets Go Hiking - Team Leader
Dog Lovers Team - Team Leader
SP Class of June 3-9, 2007 - Team leader
Our Herding Dogs - Team Leader


686 Maintenance Weeks
0
175
350
525
700
WHITECAT19's Photo WHITECAT19 SparkPoints: (148,011)
Fitness Minutes: (35,202)
Posts: 13,772
8/14/20 2:24 P

My SparkPage
Send Private Message
Reply

And thank you for listening. I had to be an adult before I could grieve for my mother. Sharing her story has helped me over the years. The pain seems to surface over and over. But it is nothing compared with her suffering. When I became a mother myself, that is when I began to glimpse a bit of what this might have meant to her. Not only the physical agony, but having to watch her children being cared for by her mother-in-law. And being totally helpless.

It is hard to fathom.

The Lord upholds all who fall, and raises up all who are bowed down. Psalm 145:14

A monk was once asked: What do you do there in the monastery? He replied: We fall and get up, fall and get up, fall and get up again. - Tito Colliander

The Jesus Prayer helps to lift the whole life, body and soul, to a level where . . . the world is sought and known in the beauty of God, not God in the beauty of the world. - Mother Maria of Normanby


 Pounds lost: 44.0 
0
11.5
23
34.5
46
PETALIA's Photo PETALIA SparkPoints: (155,928)
Fitness Minutes: (276,919)
Posts: 1,915
8/13/20 6:30 P

My SparkPage
Send Private Message
Reply
Oh WHITECAT, this is big and powerful and painful stuff! What became of your mother's life, what you, me, and women in general contend with daily. How sometimes a seemingly small interaction can trigger a cascade of memory, experience, and emotion. I am glad you have prayer. That is strong. I have meditation. Not the same at all but I find it helpful to me.
Compassion and justice I value so much.
You are not at all odd. You are extraordinarily articulate. I am awed that you pray for that doctor who initiated so much damage. I have heard of this practice, to meditate or to pray for those whose actions have caused harm, in various faiths. I admire this, I'm in awe of this, and I'm baffled by this. Your writing today has caused in me a lot refection. Thank you.

WHITECAT19's Photo WHITECAT19 SparkPoints: (148,011)
Fitness Minutes: (35,202)
Posts: 13,772
8/13/20 5:54 P

My SparkPage
Send Private Message
Reply
Oh, yes! Gender is definitely involved!

I'll tell you a story. My mother was a brilliant woman. She went to college. She played the violin in an orchestra. She taught special needs children. She was a pastor's wife, and fulfilled all the duties expected of a pastor's wife (not a small task). This was in the 1950's

Mom started to be unsteady on her feet. She started dropping things. She started slurring her words, and her eyes would go out of focus. She went to the doctor, and he gave her some pills and told her to go home and rest. He treated her in this manner for an extended period of time, maybe a couple years. I'm not sure exactly how long because I was a little kid. I learned much of the story later.

Mom got worse and worse. The doctor may have changed out the pills a time or two. I don't know for sure. But the truth was not revealed about them until Mom became so despondent that she swallowed most of a bottle of them. When my distraught father called the doctor, Doc R. just laughed. He said the pills would not hurt her. They were JUST PLACEBOS! He had assumed that she was just an "hysterical woman" who was imagining her symptoms!

My father was furious! He took Mom to another doctor. The new doctor diagnosed her with Multiple sclerosis. It was still an incorrect diagnosis, but at least it was plausible. The doctors treated Mom for MS for several years. She was in nursing homes much of the time.

She had gone from being unsteady on her feet to walking with a walker to being bedridden. At first her words were just slurred. Then her speech was so affected, we could not understand her at all. My uncle made an alphabet board for her, and she would spell out words by pointing to the letters. But then she could no longer control the muscles in her arms and hands well enough to point at the letters. So she could not communicate at all.

One day Dad took us to visit her at the nursing home. The nurses had fixed her up really pretty, and she had a book propped up in front of her as if she were reading. I found my older brothers outside of her room, laughing and whispering together. I asked what was so funny. They told me the book she was "reading" was upside-down. And she could not even tell!

By the time they found the tumor in my mother's brain stem, it was HUGE! It was all intertwined in the nerves. The doctors tried to treat it, but it was too late. And it was the early 60's. Treatments were crude back then.

I have no conscious memories of my mother before she was ill. She did not die until I was in the seventh grade. My last memory of my mother is from January, 1964. She looked very much like one of those refugees from Auschwitz that you see pictures of from WWII. Her brilliant mind was locked up in a body that would no longer function in any way.

Dr. R., that first doctor, contributed to her anguish by blowing her off. I pray for his soul daily. I do not know if he repented while he was alive, but I hope he did.

I also pray for my mother. I pray that her kind heart was not obliterated by her suffering.

I have encountered many doctors who remind me of Dr. R. I encountered one just within the last two weeks. It brought all this tumbling back into my consciousness. I had to talk to my primary care physician (who he had also blown off). And I had to call my psychologist and talk to her.

I have another condition, unrelated to my brain injury, which this doctor does not believe in. Not only does he disbelieve my symptoms, he refuses to accept two sets of lab reports that prove that I have the condition!

I wonder how many women this doctor has injured because of his dismissive attitude. He is very "sweet." Probably most of his patients love him, all the while he is blowing them off. But it is saccharine. Thank goodness, he will be retiring soon. But, alas, there are more where he came from!

I am old and tired. I am treating myself to the extent that I can, by eating healthy food and exercising when I am able to. I have lost a considerable amount of weight, and some numbers are improving. I hope to continue. Of course, I also have to take medicine for some things. But I try to avoid what I can.

And I pray. I pray for these doctors. Not for anything real specific. I leave the specifics to God. I think the doctor who upset me recently probably thinks himself a good Christian man. I think he believes in a brand of Christianity that is quite distorted. So I pray for his salvation, however God may bring that about.

Perhaps you think me odd. No matter.

Edited by: WHITECAT19 at: 8/13/2020 (17:58)
The Lord upholds all who fall, and raises up all who are bowed down. Psalm 145:14

A monk was once asked: What do you do there in the monastery? He replied: We fall and get up, fall and get up, fall and get up again. - Tito Colliander

The Jesus Prayer helps to lift the whole life, body and soul, to a level where . . . the world is sought and known in the beauty of God, not God in the beauty of the world. - Mother Maria of Normanby


 Pounds lost: 44.0 
0
11.5
23
34.5
46
PETALIA's Photo PETALIA SparkPoints: (155,928)
Fitness Minutes: (276,919)
Posts: 1,915
8/13/20 3:46 P

My SparkPage
Send Private Message
Reply
It is terrible to be invalidated! Doctors take an oath to do no harm. When they talk like they know more about my body than I do, and therefore can decided what is and what will be done, I get furious! I've learned the hard way that this body is mine and that I care about it more than they. I now approach my encounters with doctors looking to be informed. I don't have the technical knowledge that they have. I believe in informed consent. I recall once after telling a doctor that I was having a certain experience, he said that it was impossible. I said, are you listening to me, I am telling you that is exactly what is happening to me! Could gender be involved as well? Probably. Any false power dynamic. Ohhh, my blood boils. WHITECAT and RONDARC I hear you both!

WHITECAT19's Photo WHITECAT19 SparkPoints: (148,011)
Fitness Minutes: (35,202)
Posts: 13,772
8/13/20 3:16 P

My SparkPage
Send Private Message
Reply

I am trying to focus on the positives in my life. God has enabled me to do things in spite of my injury. Now that I am a "senior citizen" I can see that much can be accomplished even when we don't feel well or right. If I need to rest, I rest. But I am trying not to lay around any more than I have to!

Got some other health concerns besides the old injury. It comes with age!

emoticon

The Lord upholds all who fall, and raises up all who are bowed down. Psalm 145:14

A monk was once asked: What do you do there in the monastery? He replied: We fall and get up, fall and get up, fall and get up again. - Tito Colliander

The Jesus Prayer helps to lift the whole life, body and soul, to a level where . . . the world is sought and known in the beauty of God, not God in the beauty of the world. - Mother Maria of Normanby


 Pounds lost: 44.0 
0
11.5
23
34.5
46
RONDARC's Photo RONDARC SparkPoints: (217,378)
Fitness Minutes: (183,609)
Posts: 11,372
8/12/20 5:27 P

My SparkPage
Send Private Message
Reply
I agree with you WHITECAT19. I have the same thing with my doctors not believing I have problems associated with my brain tumor......I do have a neurosurgeon now who listens to me and answers questions for me.

~~ Ronda~~

If you make up your mind to be happy there's no reason why you shouldn't have a fairly good time.

Border Collie Lovers - Team Leader
Lets Go Hiking - Team Leader
Dog Lovers Team - Team Leader
SP Class of June 3-9, 2007 - Team leader
Our Herding Dogs - Team Leader


686 Maintenance Weeks
0
175
350
525
700
WHITECAT19's Photo WHITECAT19 SparkPoints: (148,011)
Fitness Minutes: (35,202)
Posts: 13,772
8/10/20 3:37 P

My SparkPage
Send Private Message
Reply

The most difficult thing that I have found myself contending with is not the problems I have with my brain and body not doing what I would like. It is the disbelief of other people, including doctors, that I even HAVE any residual effects from the brain injury I suffered more than 50 years ago!

I manage as best I can, with no help whatsoever from my doctors, even the numerous neurologists I have seen. I have come to the conclusion that I will never be heard.

The Lord upholds all who fall, and raises up all who are bowed down. Psalm 145:14

A monk was once asked: What do you do there in the monastery? He replied: We fall and get up, fall and get up, fall and get up again. - Tito Colliander

The Jesus Prayer helps to lift the whole life, body and soul, to a level where . . . the world is sought and known in the beauty of God, not God in the beauty of the world. - Mother Maria of Normanby


 Pounds lost: 44.0 
0
11.5
23
34.5
46
PETALIA's Photo PETALIA SparkPoints: (155,928)
Fitness Minutes: (276,919)
Posts: 1,915
8/10/20 7:52 A

My SparkPage
Send Private Message
Reply
SDANLSON raised a good point on our team's wall this morning: "We will deal with some brain injury sequellae for life."

Most afternoons, my brain disintegrates. Formulating thoughts and sentences becomes difficult. I become exhausted and have to go to bed. I resent this like crazy. Every day I feel like Cinderella watching the clock, charging through my short day until 2 pm rolls around and I know it's horizontality and stupidity for me. After 4 hours, I get a second wind, and can get up and do things around the house for a few more hours.

This has not been my most critical after-effect but rather the most mundane and consequentially neglected one. Using various modalities such as neurofeedback, meditation, yoga, sensory processing awareness and work, I have greatly improved on so many things. But this, I realize like SDANLSON said, will be life-long to one degree or another.

I think about 'acceptance' and I don't even know what that really means. This summer, I've thought more about the word 'allow' and I've worked on making friends with my wonky brain instead of fighting it and hating it. This is so difficult! I'm 15 years in, you'd think I'd have a handle on how to live my life by now!

How do you all contend? Like Greta Thunberg, is your 'disability' ( Oh how I dislike that word but you know what I mean) your superpower? Do you know what acceptance means and is that useful to you? I would love to know how you deal.

Edited by: PETALIA at: 8/10/2020 (08:02)
Page: 1 of (1)  

Report Innappropriate Post

Other BRAIN BUDDIES! Neurological Conditions General Team Discussion Forum Posts

Topics:
Last Post:
12/5/2020 6:34:42 PM
2/21/2021 6:16:51 PM
1/30/2021 5:49:45 PM



Thread URL: https://sparkpittsburgh.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x18470x74164435

Review our Community Guidelines