Support For Icon Nikon

[JustBe]

Hi Alex, I found one last colorful tree today...

 

[Icon Nikon]

Alex, have you checked out the thread "Photos of Nature where you live"? There are some lovely landscapes there to add to your "window".

I think you missed the point M'O. So I will attempt to explain it. I have many pictures that I have taken and I can of course do a search online for additional pictures.

However, neither would offer me much comfort or even the ability to escape for a few minutes, because what those pictures above lack are 1) the feeling as if I am not entirely alone in this battle (which I AM but sometimes good to trick the mind, 2) a connection to anyone outside these four white walls, and 3) a sense that people care about my ultimate battle as to whether I live or die.

So it is the gift of giving those pictures, not the pictures themselves that is endearing, special, and hopeful!

But it is ok because I realize that I AM really all alone in this battle because few can understand or realistically do too much for me, except listen, be there, and care. And I am grateful for those that really listen to what will help and try to give even if they do not fully get it.

Unfortunately I am having great difficultly with one particular poster. This person continues to write imo, trite and insensitive posts, simply because she is posting everywhere 24/7 and does not or can not take the time to get a true sense for what would be helpful and what would quite hard to read about given that I reside in ICU but am in my 40s - nowhere near when someone should have to think or read about death or compare me to a relative much older than I am. I wish she would less and that way she could know a little bit more about and thus speak to me or ask me questions, as if she really cares to know.

Then other posters follow her lead, which sometimes makes me cringe or feel as if people are already burying me before I have stopped fighting or are actually dead. It is hard enough to fight, let along fight when others seem to already have me losing this critical fight. I need people to encourage me to fight or to at least do what I feel is best for me as long as it is not a decision made in haste. So sadly now this thread has become less supportive than it used to be, because this individual is a "volume posting" and not thinking about how someone in a hospital for over a year would likely read it (and no, I do not mean PTSD stressors, just sensitivity for where that person is and all that they are without but fighting to regain access to).

Maybe volume posting fulfills some need, but on a support post for serious illnesit is quite painful to read much of the time. If that person does not wish to know me or my struggle then why post? I just wish she would be less careless with hers as I come here to get inspired and refueled to fight, not prepare for surrender.

I just do not know how someone can ask me, in this support thread, for my help regarding their own situation (caregiving), sincerely get an in-depth answer from me (no generic stamp reply), and then not respond at all to my concerns or even take the time to even ask me how I am doing or feeling? I feel used or duped because I spent hours trying to genuinely offer them what I could, which was in no way was easy for me to do on this device with my physical paralysis, nor was it hollow or shallow or empty my any mean,...and ALL that she saw in my own post of pure agony was that I had "cared for my grandmother with Alzheimer's".

Have we forgotten that this is a support forum? Have we forgotten that to ask for sincere support means to offer sincere support? I wonder if that individual would talk about a nursing home (when that means palliative care and death for me) or "how hard it is for them to go to the hospital to visit someone" when I have not left this torturous place in over 14 months if they had to look me in the eye when doing so?

I try to be respectful and ask for very little on this thread and I do not attempt to fully describe what I am going though medically, legally, or mentally without an advocate, therapist, or hospital (that would rather see me dead than to treat me) support. I do have a warm, caring, and wise neurosurgeon doctor now, but I only got him after much mistreatment or worse, non-treatment, which led to a collapsed spine with cemented and fused vertebrae, a giant cell tumor, radiation, a large open wound the size of my entire torso, lethal C-Diff, and now a virus with secondary pneumonia which my compromised autoimmune system cannot even produce a normal amount of white blood cells to combat it with.

All this, and I still cannot get to my 3rd or 4th (depending on how one looks at the lesser one) brain operation to excise a tumor which has grown since last December and minimize damage from abscess/infection that has me immobilized from the neck down (except my left hand), as the tumor/abscess interferes severely with all nerve transmissions. And this synopsis does not even do justice to all the miss/non-treatment or daily PTSD stressors/triggers while a therapist is being withheld because it might work against the hospital in my lawsuit.

I am sorry M'O as this does not apply to you. I just have been mostly staying off this site because this has been eating me up inside, even though in real life I would not have wasted my time on someone who only used this thread selfishly. Really sad and tragic. And anyone who knows me, knows that I will, even when so sick, give whatever I can to anyone who asked, but I need support here. I have stayed away, except to check in on those special souls whom I deeply respect and care for and souls whom have at times offered me some comfort when I needed it.

Some of those people have a friendly chat with me in PC, some offer pictures and care on here, some call me (even though there is a 12hr time difference and I cannot call them back), some just take a minute out of their own issues to ask me how I am....and so on. And those are all gifts of hope to me even when battling so hard to get to brain surgery while knowing that I will likely lose more than what the last surgery stole from me.

Again M'O, I apologize for only the beginning part was meant to answer you. I am glad that you are safely home, that you have Doozer and Kira to ground and comfort you. And I am thankful for your pictures and for understanding why I could not write much while you were at your parents' house (though as promised I kept current). When do you meet with your therapist? I hope they are trauma trained and that your alliance with them helps you to heal.

I guess I needed to state what I wished I did not feel so that I could move on and so that one person does not end up tainting how I read other replied (yours included M'O), as none of rest of you deserve that from me.

I do greatly appreciate those who take a little time to get just a sense of my experience and those that use that knowledge to connect with me on here or in PC or in email or on the phone. I hold you all dear to my heart.

Thank you M'O for trying to think of ways to brighten up my room and for encouraging me not give up. I do appreciate what you tried to do! Honest, my friend!

Thanks to the those who chose to read this and not think less of me or the other poster as I assume she did not intend to cause me such distress. I am at the end of my rope and worse my doctor seems to be out of ideas. And quite honestly I am not as capable of helping with my own care because I am plum exhausted and scared!!!!!

I will understand if no one feels as if they wish to post here anymore, for I let out what I would normally keep to myself and just swallow. I just wasted time writing what she asked for, but got hurt my her posts here that were clearly insensitive to anyone in the hospital for anything major or for such a long time.

Thank you M'O and all others for caring about me and my physical and mental battles/setbacks I must cope with each. It truly is like looking death in the mirror each day and having to decide will I fight it today? Your supportive and personal encoyragement does mean so much and helps me answer that very somber question with a yes more often than not.

Thanks and Goodnight,
Alex

 

[Nighthawk]

((((((((Alex))))))))

I find great strength in your honesty.

One of the babies we speak so warmly about. I wish I could sneak her into you for a cuddle.

 

[JustBe]

Alex, I too appreciate your honesty, insight and courage. The little comfort or escape that my poor photos bring you is a joy to my heart because I feel so helpless to do anything to ease your physical or emotional... (no it goes deeper but I don't have the word for it)...pain.

Do you know that when I am out I look for things to take photos of for you? I'm looking forward to the snow so that the mountains will turn to magic and I can take more photos of my home for you.

Everything you say is valid and important, but you don't need to reply at all unless it helps you to release some of the pain. Just knowing that you're out there, fighting and surviving against all odds is more than any one person should have to bear.

I know that you feel alone and in the physical sense you are, but from my heart to yours; You are NOT alone.

Sorry this was so long, keep fighting and know that even though I may say or do the wrong thing,I care and will keep trying to brighten your long days and nights.

 

[JustBe]

Good morning Alex,
Here is Kira out back greeting a new day.

 

[JustBe]

Alex, here's the evening bookend for the photo above!

 

[Deleted member 12723]

(((((((((Alex)))))))) Thinking of you, but at a loss of what you need and want. I was confused by your post. I hope I have not offended you.

I know you are terrified and scared and things are not looking good for you. You have been going thruough the different stages of grief. One of the stages is anger. Which is perfectly normal. You have to go through the stages of grief to get to where you are going. I wish I could give you a slide show of all of the beautiful places we have been. I wish I could give you a real hug. You are in my heart and prayers. I hope for some good to come into your life asap. I am sorry I do not have a camera to take healing pictures for you. Great big cyber hugs.

 

[Icon Nikon]

I have tried my level best, Gizmo, in my last post to indicate to you, without using your name, that your posts on this support thread were hurting my healing process or ongoing battle (please look at you last posts about nursing homes, elderly relatives, the fact that you focused in here in Alzheimer's and not me and now you are telling me what is happening to me when it is not anywhere near close to being correct). I spent a great deal of time and energy trying to explain why that is as well as directly stating what I do need and why. However, you seem to have your own agenda about what I feel and what I need, while completely disregarding everything I wrote and how important this thread is to me. Therefore would you kindly leave this thread alone as your posts are not helping me and I really need all the help I can get (perhaps you just cannot see how your posts are read and heard by someone who has been fighting and in the hospital for an insanely long time period).

I have tried to be gentle and subtle and not point you out directly, so I guess I need to be more straight forward as you seem to get confused by anything less. I need you to really hear me and respect the purpose of this thread as it is very vital to me at this time. And quite frankly nothing else that I have tried has worked. I would simply like to use the ignore feature because I find your posts very painful to read and insensitive to my situation (even if unintended), but if I do that I see how your posts change the direction of this thread, and I just cannot handle additional posts that are just as unhelpful simply because others are following your lead instead of looking back to see what I asked for/need and why.

I personally have a hard time with volume posters, posters who show up on and post on every single thread. I personally feel that quality posts from a place of knowledge are far better than quantity posts. High volume posters rarely have the time to read who originated the thread and why. Also they rarely take the time to get to know the person they are replying/speaking to, and while that may not be as important in some threads it is very important on support threads or trauma diaries.

When I wrote about my horrible experience of being intubated against sound medical practices and the ensuing fight over how to get it removed, as it was preventing me from being able to get back to where I was in January of this year. A point where I could be reevaluated to determine if more brain surgery is even an option now after all the mistreatment, nontreatment and lawsuits that had to be filed to get my treatment restarted.

However all you focused on out of that entire post was that I had cared for my grandmother with Alzheimer's. And all you wanted was my support for your situation and info about caregiving. I even entertained your question which had nothing to do with any support for me, yet that is why KP generously started this thread. I needed it when brain surgery took away my ability to post on threads as I lost most of my expressive and receptive communication skills. So this thread was a way for others to let me know that they were still pulling for me to work to be able to post again. Have you attempted to give me the level of support that you asked for from me in this support thread for me? Why not?

So this is AN example of what is so hard and stressful for me to read:

I know you are terrified and scared and things are not looking good for you. You have been going thruough the different stages of grief. One of the stages is anger. Which is perfectly normal. You have to go through the stages of grief to get to where you are going.

And here is what I need if it is truly meant to be helpful for me:

1. Please allow me to evaluate my own status. - Stating "things are not looking so good for you" kind of has me already in the grave and that leaves little room for hope and is not your place. Can you see that?

2. Please do NOT presume to know how I feel because there is NO way you can know that. - only I know how I am feeling and "grief" is not anywhere close at the moment, but does again place me prematurely in the "terminally ill" category. Please do not bury me before I am dead or while I am fighting to live. Can you see how this would hurt, when hospitals in general manhandle patients and once again it not focused on healing or living? Grief would only occur if I agreed to stop fighting to recover. Make sense?

3. Please also do NOT presume to know what I am going through or what I need because again you can NOT know and are not my therapist or a qualified professional - So again I do not need nor am I going through the 7 stages of grief. Do you even know that I am a licensed social worker with specific training in trauma and child abuse? Can you see that grief processing to someone in ICU means accepting death, since that is where the 7 stage of grief would put me when you talking about serious illnesses and setbacks and complications?

4. And please do NOT presume you know where I am going. - btw is this before or after I am dead according to your assumptions. The point is I am still alive and fighting to stay that way and your words undermine all my efforts towards that goal. I AM not dead yet!

So please respect my boundaries as the above are for me to determine not you. And no this is not the only post where you have done this, but it was the first post where I did try to express how your careless or rushed posts, while well intentioned I am sure, are not helpful or encouraging if they do not align with what I need and want.. And yes this is what my prior post was speaking to.

I am in ICU and have been there for 14 1/2 months. Can you try to imagine how you might feel with no legal spouse and no visitors. So yes, it deeply hurts to hear you go on about putting so-n-so in a nursing home and how sad it was for you, when I am fighting for my life. Or to hear you go on about how difficult it is for you to visit someone in the hospital when I can not have any visitors in isolation and you got to leave the hospital when visting hours were over while I do not have that freedom, luxury, or privilege. Or to hear you go on about all the things that you can do and places that you can go when I am captive to this all white, no window, isolation room because my autoimmune system is so compromised. Try to imagine yourself where I am and then ask yourself if your posts would be helpful or very painful to read if you were me?

So being held captive in here while paralyzed is a new traumatic experience each any every day and more than once a day. Also being captive in here without any mental healthcare is a direct trigger to my abusive past...and I have had to endure this and maltreatment for over a year. Can you imagine, since I was repeatedly raped, which included oral sex, what I experienced last night when the medical staff would not listen to me and forcefully intubated me (yes shoved a tube down my throat while restraining my free will or right as a patient)? And each time they tube me they do not follow proper protocol, thus further damaging my heart and my vocal chords (some of which is irreversible and I am only in my 40s).

I tried very hard to spell out what was hurting me in my last post. So what hurts me most is the inattention or careless use of words without considering the person you are writing to or the context of their circumstances as defined by them, not you. I wish you would speak to me, to my circumstance, and be aware of how someone in my position would feel when reading them. You have me trying to accept death when I am fighting to live. I hope you can see now how that is so devastating to me!

Do you ever think that it may not be wise to post on every single thread? I certainly did not need this stress tonight. Do you think you should make an attempt to understand what you are responding to before you write a reply? Do you ask yourself if your post is aimed at or helpful to the original poster who started the thread? And if you do not care about me, then just stop posting on my thread - that will leave you with more time to post elsewhere.

I really wish I did not have to expend this much energy when this thread was originally created to be a helpful resource to me. Words hold such great power - the power to hurt or the power to heal!!! I really wish you would try to read your posts on this thread from my perspective and see how if they would be painful to someone in my position, even if you never thought about it before. Please try to now because I really need this thread as a source of strength for me!

Thank you for understanding that I am trying to explain what it feels like to me, nothing more and nothing less.

Warm Regards,
Alex

 

[Nicolette]

 

[JustBe]

 

[Icon Nikon]

Love the Asiatic Lilies Nicolette, esp when you are feeling so crummy yourself. One day maybe I will get to know how it feels to go home. I am starting to question it.

I just want to rub his little baby tummy, Movin'On. Thanks so much. I miss my boys...sigh!

 

[JustBe]

(((Big Hugs))) Alex.

The photo above was Doozer at 10 weeks old! He was so little that I had to make his sweater out of a sock because even the xxsmall sweaters were so big for him that he'd walk right out of them.

Do you have photos of your boys with you there? I would love to hear about them.