Do they understand I am different now?

General
1

So I find great comfort in this community, THANK YOU ALL!!!

I was wondering if others who have had an Annie rupture, get the same strange looks from others when you have trouble processing information or just bad days of pain? I go through this with friends and even family and it always puzzles me that although I look the same, the fact of the matter is I am NOT!!! I do not function the same way as I used to. I have good days and bad days...am I allowed? I used to fight with the title, "Permanently Disabled!" I wanted to prove them wrong, but the truth is I can not...I have major deficits now, I have even found myself pushing too hard to prove I can still do things like I used to. I wont even mention the loss of normal sleep. All that usually results in 2-3 days of pain and recovery just to get back to the current Penny. How do I get others to understand what it is like for me now, even though my hair has grown back, and my scar has healed...

Your thoughts, comments, or complaints are welcome!

Penny

2

Penny...thank you for bringing this up...my thoughts are too 'wired' to respond tonight... patioplans..

3

Hi Penny,

I’m sorry to hear this - it hurts when those who love us do not understand. I’ve distanced myself from those who are harsh with their reactions. It’s lonely, but I’d rather fill up my world with quiet than with people who treat me like I’m stupid. -Markelle

4

So you feel it too? I am glad to know I am not the only one. - Penny

5

Hey Penny,

I too get the strange looks and judgements from others. If you lost an arm or a leg it's pretty obvious you have a disability, but a brain injury is not so obvious. "You look OK, so you must be OK" but I'm not. And like you I have good days, which are OK and BAD days which are just bloody awful. I used to push myself to try and rehabilitate, to build up some sort of stamina so that I would be able to return to work. The fact is this is not going to happen and the more I push myself, the more harm I am doing to myself. It has taken me a long time to get to this point of 'acceptance' and I must admit I still do not like the idea that this is as good as it gets, but this is the reality, like it or not. I get frustrated to the extreme with myself and the judgement of others helps like a kick in the teeth. So I have good days of 'acceptance' and bad days of 'frustration'. I have tried to get others to understand all of this but I am sorry to say I haven't succeeded.

I'm now (well, for today anyway) at a point where I have to manage this for me. Others are going to judge and so be it. I have proven to myself that I can't do this by anybody else's standard or measure. Its all to do with my tolerances on the day and only I can measure that.

Just know that you are not alone and we are all managing the best way we can. Some days that is really well, but others, not so well. When nobody is listening or understanding, come chat to us. We know from experience.

Merl

6

Merl and penny and all...

RE: Recovery, neuropsych tests and therapies...

What did any of the 'neuro- specialists' address at any time with each, or any of you, to assist recovery?

The neuro-docs did none for me...when I was discharged...there is interesting variances in my discharge records, the transfer record for limited speech therapy, the story-formatted maintained med record...the itemized statement, and the various codes of billing and those of conflict...

Of high interest to me...multiple docs are titled "neuro-somesuch"...and, purportedly, they are highly trained in neurology... Even those in basic training like PCPs...likely and presumably... have had some intro to neuro issues...so that they may be able to refer patients to the appropriate neuro-doc...

Later on...I will write the various sentences...and/or paragraphs of the neuro-levels...as I did note a brief sentence to Michael the other day re: cross-filling and ICP...particularly as it related to my ACA/ACOM data ... much more to add to ACOM

I have attempted to open (fenestrate?)...some issues on cranial nerves of our vision...their pathways and close proximity to other cross-overs...where hopefully that brief data can open questions of members to ask their neuro-whatever docs...

Prayers that some of that data ...the online resources...and/or terminology to search... to help in recognizing symptoms and form questions to ask their docs...

Merl said:

Hey Penny,

I too get the strange looks and judgements from others. If you lost an arm or a leg it's pretty obvious you have a disability, but a brain injury is not so obvious. "You look OK, so you must be OK" but I'm not. And like you I have good days, which are OK and BAD days which are just bloody awful. I used to push myself to try and rehabilitate, to build up some sort of stamina so that I would be able to return to work. The fact is this is not going to happen and the more I push myself, the more harm I am doing to myself. It has taken me a long time to get to this point of 'acceptance' and I must admit I still do not like the idea that this is as good as it gets, but this is the reality, like it or not. I get frustrated to the extreme with myself and the judgement of others helps like a kick in the teeth. So I have good days of 'acceptance' and bad days of 'frustration'. I have tried to get others to understand all of this but I am sorry to say I haven't succeeded.

I'm now (well, for today anyway) at a point where I have to manage this for me. Others are going to judge and so be it. I have proven to myself that I can't do this by anybody else's standard or measure. Its all to do with my tolerances on the day and only I can measure that.

Just know that you are not alone and we are all managing the best way we can. Some days that is really well, but others, not so well. When nobody is listening or understanding, come chat to us. We know from experience.

Merl

7

Penny...sorry for my delay...

First, separate here...our pineal gland (endocrine), at the roof of our 3rd ventricle (the CSF) is the controller of our circadian rhythm...our sleep patterns...

You may want to search online: pineal gland anatomy and physiology...

I have such strong commitments to learn so much of this...the 'stuff'...not even found in the FDA review/approvals of the applications of manufacturers (those big corporations) of the devices/equipment...

I think many of us have the good to bad days...Just in my researching (beginning to comprehend)...over a couple of days...the next one I may sleep 14 hours...totally dysfunctional otherwise...

Have you had any neuropsych tests done?

Have you applied for, been approved for, any disability?

I am in my 12th year (and, I have not yet gotten my 12th anniversary data done... .

Most of us have diff lives/lifestyles...I could have readily stayed "social"...IF I did not want to learn; re-learn ... Family/friends were advised by neuro-doc in hospital to keep me "social"...vs keep her in therapies... I was the one who finally backed away from socializing...being in groups and/or in noisy restaurants...There were a number of those who backed away quickly...but were not the ones of long-term close connections...

Conversely, what all did we learn when we were told of family/friend who had a stroke, a heart attack,

dialysis, cancer... other...possibly an injury?

Yes, we all did a lot at first...but we worked, had our family, our lives, our homes...and, after awhile could not do daily or twice weekly stops, etc...Because there could always be another in our family/friends.. . other changes in our own life...

This had made me think a lot on a specific subject...will write separate...re: ischemic stroke... and, what all I never asked about ...like which part of brain function has been altered/affected...

8

Penny... I so hope you will note the PBS ...above...and hope you will enjoy observing it... whenever it is scheduled by your local PBS...

I always think of our God-given...I responded to you Tuesday...and, it was Wedneday night that this program was on my PBS... @ 10PM...



patioplans said:

Penny...sorry for my delay...

First, separate here...our pineal gland (endocrine), at the roof of our 3rd ventricle (the CSF) is the controller of our circadian rhythm...our sleep patterns...

You may want to search online: pineal gland anatomy and physiology...

I have such strong commitments to learn so much of this...the 'stuff'...not even found in the FDA review/approvals of the applications of manufacturers (those big corporations) of the devices/equipment...

I think many of us have the good to bad days...Just in my researching (beginning to comprehend)...over a couple of days...the next one I may sleep 14 hours...totally dysfunctional otherwise...

Have you had any neuropsych tests done?

Have you applied for, been approved for, any disability?

I am in my 12th year (and, I have not yet gotten my 12th anniversary data done... .

Most of us have diff lives/lifestyles...I could have readily stayed "social"...IF I did not want to learn; re-learn ... Family/friends were advised by neuro-doc in hospital to keep me "social"...vs keep her in therapies... I was the one who finally backed away from socializing...being in groups and/or in noisy restaurants...There were a number of those who backed away quickly...but were not the ones of long-term close connections...

Conversely, what all did we learn when we were told of family/friend who had a stroke, a heart attack,

dialysis, cancer... other...possibly an injury?

Yes, we all did a lot at first...but we worked, had our family, our lives, our homes...and, after awhile could not do daily or twice weekly stops, etc...Because there could always be another in our family/friends.. . other changes in our own life...

This had made me think a lot on a specific subject...will write separate...re: ischemic stroke... and, what all I never asked about ...like which part of brain function has been altered/affected...

9

Penny, a lot of us feel your angst and pain. For me, it’s obvious I know longer have a southern accent. Most people don’t even know what a brain aneurysm, SAH, hemmoraghic stroke is. So I think, educating the masses is a step. The first step I think is accepting one’s self. I was told I couldn’t do a lot of things, and many times I overdid things I shouldn’t. Healing takes time, just as learning our different abilities. I am still pushing the envelope so to speak. After almost two years, I have many words back. I read a lot, even if I don’t know the words anymore. I also keep a dictionary near by to look them up. I still have skills and each month, I find a different way to use the skills I possess. It takes patience and time. Most importantly it takes people willing to learn about brain aneurysms. Hang in there, talk to the people you love, educate those who are willing to learn.

10

Thanks Moltroub, I am continuing to educate others and even family. And you are right they don't even know what it is...ruptured SAH, or Annie as I call it. I am now 7 years out and it is still a slow healing, but a healing nontheless! I look forward to the little things that most take for granted. Thanks for the support and best of luck to you as well.

Penny

11

Hey Ms. Penny, I had an idea, why don’t you meet us in DC next Lobby Day? We had a blast - okay all the stairs, walking, people, lights, confusion were a little overwhelming for me. Then GA will be covered.

I don’t know about GA much, friends and family down in and around Atlanta and we always get gas in Lithonia by the antique store off 85. It was a good place to walk our dogs.

Maybe GA has a brain aneurysm awareness already in September, maybe you could be the person to get it done, if they don’t! There’s a nice GA State Park up by Sautee that has a motel, cabins, buffet, walking trails, boating, etc. I wonder if a place like that would sponsor a Brain Aneurysm Awareness weekend. Maybe some classes for family/friends, some for us, some fun stuff thrown in. And the park isn’t far for AL, TN or NC if you’re in the mountain regions.



This lady got NC to do BAA here in NC http://news.unchealthcare.org/empnews/2014/june-12/tammie-parris. To be honest, I’m not sure what it does for the citizens. Seems to me the Western and Eastern parts of NC are about as different as Northern and Southern California.



I was able to meet with my Congressman, Patrick McHenry, and I really liked him. He was attentive, good eye contact, good hand shake. I was a bit disappointed with my Senators not jumping on the band wagon, but I have to figure out why. Burr’s office said Senate doesn’t do appropriations but Tillis clearly did with Alzheimer’s. Something I guess I will have to relearn…And I don’t get why it has to be done every year, just do it and then we can go up every year to beg for money in research. I also wish there were medical guidelines for our PCP to follow with SAH folks. If I lived near the hospital where I was operated on, I could easily have gotten services. The ball dropped in my court because other then Speech Therapy, I didn’t know what else to do. I did get my own psych evaluation. My PCP wanted me to have a Neuro Surgeon here in my area, but the one I have and he sent me to, doesn’t do brain surgery. I thought I was going back for issues on my back again, the Neurosurgeon said I was referred to for my brain. Didn’t need two for one brain.



I know what you mean by the little things…saw the deer this evening tease the dogs again and a beautiful sunset. Life is Good!





And I was thinking! Are the strange looks from friends and family, concern? My partner is far more frightened of my bad days than I am. What I get aggravated on is people saying “I’m sorry” when I have to explain my accent, or photophobia because I don’t take off my sunglasses inside most of the time. Maybe next time I get glasses, I’ll get mirrored lenses like back in the 70’s or was it the 80’s? Laughing out loud straight to bed.



Penny you are an inspiration, keep it up!

12

Hey Penny and Moltroub,

I could not agree more with Moltroub's Saturday post. Its an education for everybody from family all the way thru to the newspaper man, including ourselves. We must learn things again. Some people don't understand that fact. It's like "...you can walk, you can talk, so you can do everything like before..." "No, I CAN'T" then I get that "...oh you poor thing.." MAN, I HATE THAT!!!! Makes me sound geriatric. Or people will see the scars on my head and get all concerned, so now I wear a cap to hide them all lol

I have tried (and failed) to meet everybody else's expectations from dr's to employers to family and friends. And I'm over it. It's about me, not them. I do admit that firstly they were my expectations of myself too, rest, recover, return to work. Well that WAS the plan. Two years on from the last incident and this time I'm stuck at 'rest', recovery has been minimal for the last 6mth and as for the "return to work" ppfffttt. Dr's are saying that's not gonna happen, Grrrrrrrrr

I honestly think we are all inspirational in our own way. Let's face it to even just to get back to 'here' is amazing in itself. Our individual battles maybe insignificant to others but when you've actually had that battle personally, you actually know how HUGE those steps are, small or not to others. Those steps have been very significant.

Prior to my last episode I was working with people with disabilities for 10+yrs. Every 3 months we would do reviews of progress. The reviews had 3 major areas: What was the goal? What were the problems/difficulties, how do we overcome them. And PRAISE. Acknowledgement of the progress made, no matter how small. I worked with a lady who wanted to cook but was scared of the stove, it was hot. The first step was to get her to boil water. BIG STEP. And for her it was, for you and I, that's easy but it took weeks of desensitization training for her. Her mother would try to come in and take over "Oh I can do it quicker..." she'd say. But the pride the daughter had when she succeeded was HUGE. She just glowed with self worth. Then to recognize this in a review reinforced with others present just how far she had come. MASSIVE.

Although others may not see or acknowledge our steps, I strongly believe we need to celebrate every little goal we achieve. Little improvements all added together make big steps and let's face it only we really know how far we have come. We could all still be laying in a hospital bed, but we are not, we are 'here' and that's a plus for all of us. Acknowledge it, Celebrate it, even the little things. Do it for yourself.

Merl

13

Boy did you hit the nail on the head! I was even told “your dumber than a stump” btw this comment from my hubby…omg still makes me soo terribly sad!.But…I am a woman and I am Irish and I am alive so those that don’t get how hard this journey has been can K…my…A!

14

Hey Rosalie,

Being Irish and a woman has nothing to do with it Rosalie. That is an awful comment to be made by anyone. You have a brain injury, that's not by choice for any of us. Who on earth would choose this????How it effects us is so very individual to each of us. We may have similar symptoms but not the same results nor symptoms. I apologise if this sounds insulting but I'd be questioning the intelligence of the person who made that statement. Someone needs an education on brain injury imo

15

Hey Merl,

I would love to be the person to join and represent Georgia. Sooooo much to say and share about what life is like now! Thank you for the idea and I will look into it. Maybe my congressman/congresswoman would help me get it started. I am hosting the 1st first annual brain aneurysm cruise and hope to bring awareness to everyone in that way and have a little fun celebrating life at the same time. www.anniecelebration.com. Join us if you can or just spread the word. Royal Caribbean was gracious in their pricing...$239 pp.

Nontheless, thanks fo saying I am an inspiration...I needed to hear that! :-)

Penny

Moltroub said:

Hey Ms. Penny, I had an idea, why don't you meet us in DC next Lobby Day? We had a blast - okay all the stairs, walking, people, lights, confusion were a little overwhelming for me. Then GA will be covered.

I don't know about GA much, friends and family down in and around Atlanta and we always get gas in Lithonia by the antique store off 85. It was a good place to walk our dogs.

Maybe GA has a brain aneurysm awareness already in September, maybe you could be the person to get it done, if they don't! There's a nice GA State Park up by Sautee that has a motel, cabins, buffet, walking trails, boating, etc. I wonder if a place like that would sponsor a Brain Aneurysm Awareness weekend. Maybe some classes for family/friends, some for us, some fun stuff thrown in. And the park isn't far for AL, TN or NC if you're in the mountain regions.

This lady got NC to do BAA here in NC http://news.unchealthcare.org/empnews/2014/june-12/tammie-parris. To be honest, I'm not sure what it does for the citizens. Seems to me the Western and Eastern parts of NC are about as different as Northern and Southern California.

I was able to meet with my Congressman, Patrick McHenry, and I really liked him. He was attentive, good eye contact, good hand shake. I was a bit disappointed with my Senators not jumping on the band wagon, but I have to figure out why. Burr's office said Senate doesn't do appropriations but Tillis clearly did with Alzheimer's. Something I guess I will have to relearn...And I don't get why it has to be done every year, just do it and then we can go up every year to beg for money in research. I also wish there were medical guidelines for our PCP to follow with SAH folks. If I lived near the hospital where I was operated on, I could easily have gotten services. The ball dropped in my court because other then Speech Therapy, I didn't know what else to do. I did get my own psych evaluation. My PCP wanted me to have a Neuro Surgeon here in my area, but the one I have and he sent me to, doesn't do brain surgery. I thought I was going back for issues on my back again, the Neurosurgeon said I was referred to for my brain. Didn't need two for one brain.

I know what you mean by the little things...saw the deer this evening tease the dogs again and a beautiful sunset. Life is Good!


And I was thinking! Are the strange looks from friends and family, concern? My partner is far more frightened of my bad days than I am. What I get aggravated on is people saying "I'm sorry" when I have to explain my accent, or photophobia because I don't take off my sunglasses inside most of the time. Maybe next time I get glasses, I'll get mirrored lenses like back in the 70's or was it the 80's? Laughing out loud straight to bed.

Penny you are an inspiration, keep it up!
16


I agree being Irish has nothing to with it, nor the fact that you are a women! You have a brain injury and people just to understand, so their response it to make you feel bad, but that it their problem not yours!

Penny
Merl said:

Hey Rosalie,

Being Irish and a woman has nothing to do with it Rosalie. That is an awful comment to be made by anyone. You have a brain injury, that's not by choice for any of us. Who on earth would choose this????How it effects us is so very individual to each of us. We may have similar symptoms but not the same results nor symptoms. I apologise if this sounds insulting but I'd be questioning the intelligence of the person who made that statement. Someone needs an education on brain injury imo

17

Merl,

Thank you for understanding. I too can not do it alone, and I am getting to the point of acceptance. It is what it is...nuff said? People who dont understand often revert to criticism instead of getting educated on what makes us different. I am greatful to my hubby who took the time to watch the video on what my life is like now...wish everyon would do the same! Hang in there Merl...I will come chat with you again!

Penny

Merl said:

Hey Penny,

I too get the strange looks and judgements from others. If you lost an arm or a leg it's pretty obvious you have a disability, but a brain injury is not so obvious. "You look OK, so you must be OK" but I'm not. And like you I have good days, which are OK and BAD days which are just bloody awful. I used to push myself to try and rehabilitate, to build up some sort of stamina so that I would be able to return to work. The fact is this is not going to happen and the more I push myself, the more harm I am doing to myself. It has taken me a long time to get to this point of 'acceptance' and I must admit I still do not like the idea that this is as good as it gets, but this is the reality, like it or not. I get frustrated to the extreme with myself and the judgement of others helps like a kick in the teeth. So I have good days of 'acceptance' and bad days of 'frustration'. I have tried to get others to understand all of this but I am sorry to say I haven't succeeded.

I'm now (well, for today anyway) at a point where I have to manage this for me. Others are going to judge and so be it. I have proven to myself that I can't do this by anybody else's standard or measure. Its all to do with my tolerances on the day and only I can measure that.

Just know that you are not alone and we are all managing the best way we can. Some days that is really well, but others, not so well. When nobody is listening or understanding, come chat to us. We know from experience.

Merl

18

Hi Penny,

I SOOOOO feel this all the time. I constantly do not feel good. I have trouble processing everything too. I have pretty much shut myself off to everyone other than my kids and husband. I simply do not have the energy to explain I am no longer me anymore. I still push myself to do things I use to and then pay for with extreme pain the following 2 to 3 days after it. I still have trouble excepting this new me even though it has been almost 3 years now since my SAH.