Reinvisioning a new future with CP

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PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/25/2009 4:50 PM (GMT -7)   
I'm in a pondering mood today. I think it's that all my neighbors are out raking leaves, cleaning yards, kids are scrambling around, and I sit inside watching their lives and realize that's not who I am anymore. But I don't know who I am or will become.

I hope I'll make sense to at least a few people! Some (many?) of you have your lives settled, are on the other side of having integrated CP and health issues into your life. Many of you have spouses, children and grandchildren who are part of your life. Some of you are still working - despite the pain that brings. I know some of you have been through this process, but for those of us who are at its door, or have just walked through into a very, very strange room and can't find the light switch, I wonder how we might start to share creating a new vision of life for ourselves, coming to peace with (although not LIKING by any means) CP being a part of it. Perhaps a signficant part of it.

I have done a little reading on this, but keep putting off thinking about it. I'm very good at being Scarlet O'Hara and for those of you too young to remember Gone with the Wind (a movie and a book! wink) her favorite line was "I'll think about it tomorrow." I'm good at that!! Fact is I think I'm becoming an expert! shocked

But I can feel myself coming to the crossroads. It's probably being driven by money, by this topic isn't about the financial end. It's about how I see myself, my past, my present, and what can I picture for my future. I have for too long been trying to go back to what I was, and I have to admit that's not going to work. It ain't gonna happen no matter how much I try or how long I wait. If I wait I will just die here in piles of unraked leaves, unswept floors, and alone. So today I started asking myself what kind of future might I realistically envision? One that takes into account health limitations, financial limitations, the fact that I've made choices that have led me to some of these things, the fact that some unfair things (like a bad fall) have happened to me like they happen to many of you and others, that takes all these things into account, begins to accept them, reformulate who I NOW am, and looks forward rather than back.

I do not yet have any answers. But the fact I at least am asking the question is a step ahead for me. So I thought I'd come here and see if anyone else was asking similar questions, and wanted to share their questions and journey here, too.

Fatherjohn started a couple of threads not long ago dealing with whether CP was our identity. I don't think any of us want it to be our identity - heck, we don't want it in our lives - but how do we realistically redefine who we are with CP as part of it, without CP taking it over?

PaLady

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 4/25/2009 6:23 PM (GMT -7)   
PaLady,

Pretty heady subject. I don't allow myself to think too much about the future or I get very overwhelmed. I know I have deteriorated quite a bit in the past four years and it has me sad and scared. I can't do a lot of things now and can barely get through the day. I do continue to watch my grandchildren for as long as this old body will allow me, for that is what is keeping my mind going. Yes it is hard. The baby is heavy and each day is a little more demanding. Then there is the five year old who is getting bored very easily, but will being preschool in June. She is more than ready. Then in August, she will start first grade.

PaLady, I can barely cook and clean up afterwards. That's basically all I do. I wash clothes once in a while and take forever to fold them and put them away. I have hired someone to come in and clean once a week and without her help I would be in a real fix. I can't stand for any length of time. I find it very hard to get to the grocery store and shop even with those electric carts.

My CP has me chained to percocets four or five times a day and they are not always effective. Sometimes I have flares and that is really a problem cause there is no relief in sight. Hot baths are my only salvation and sometimes that's not enough.

What does the future have in store for me?? I'm afraid to ask. I don't know where I'll be in another four years, ten years, twenty years. I am afraid, but I keep waking up every day and facing the routine until I can't do it anymore. I thank God for what I do have in my life and I count all of my blessings. I try to limit the complaining, but this thread just seemed to allow me to vent. Thanks for the opportunity PaLady. I also pray for you. I know you are going through a pretty rough time of it lately. You are such a good person and I hope for only good things to come your way.

Thanks for letting me share.

Lindaloo
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 4/25/2009 6:30 PM (GMT -7)   
PAlady, don't go getting serious now. You know how that often leads to tears and a wey key board. I think I can acknowledge where you are at. I had a dream of what it was going to look like for me and my family. I did not have a good childhood, my wife was an only child and her father died when she was 5, no other realatives. I wanted to work hard until I was at least 65 and then be able to retire but retirement was going to mean I was able to see my kids where they live and volunteer helping others full time. Now that dream is gone. You all know I still work long hours and helping others is my life. CP is changing our lives and the loss of control is difficult. So is having to redefine life. Finances have a major factor in the redefinition as we have to pay for things somehow. The crossroads start coming faster than we want and we are not able to slow down or turn and take a side street. I was just sharing with my son today that if those who are my superiors at work knew what meds I am on, they would release me. I work in a private, non-profit sector and I have seen others in this field get sent walking with no notice. "I'll think about it tomorrow," is a great idea but it seems that tomorrow is closer than I want it to be. Enough for now. By the way PAlady, how are the furry friends doing. I know I have not been around alot lately but I hope you are still making those visits to see the cats. Blessings!

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 4/25/2009 7:37 PM (GMT -7)   
PALady
In allot of ways I can relate to what you are saying, altough mine isn't about CP, I have had that for a very long time and have come to terms with being on disability and not being able to work, but I still am rapidly coming to the crossroads and I to ask myself the same question as you ask: What kind of future might I realistically envision? and I think I probably have many of the same worries and limitations as you do! I see a counselor every two weeks, the one that I was seeing to try and save our marriage, I am still seeing trying to get through this divorce. Lately we have been addressing some of these same problems. I don't even know where I want to live, I don't have any ties or strings keeping me here where I am , except my health and I have my Doctors that I have established a trust and good relationship with.

PALady you said one thing that I am personally having some problems with, you said "reforulate who I NOW am" that is so so hard, because who am I now? I am not sure that I know! It won't be long and my divorce will be finalized and the house will be on the market to be sold, I have questions as to where will I live? and a whole host of other questions. Although my situation is much different than yours, I am confronting probably many of the same issues, I am going from a two income situation to just one, and even with that some of mine will be taken way. Will my retirement and disability be enough to live on? And then I to stilll have my CP to deal with and confront, but this time I will be confronting it alone! I am realizing problems with that right now! After I had to go to the ER a couple of weeks ago, and had to call my soon to be ex to come and get me because of the meds they gave me, they would not let me drive. I realized then that I had a real problem! I talked to my counselor about it and she insisted that I address it ASAP! I hate to ask people to do things for me, but I swallowed my pride and made arrangements with one of my friends, so that in an emergency I could rely on calling him to help me! Sounds simple doesn't it? But to me this was a very big deal!

PALady although our journeys are somewhat different I will be interested to see your questions maybe we can share in some of them as we go along, because to be honest I have no idea on where I am going to end up at or even how I am going to get there!! Maybe with the help of others we can also help each other move forward.

White Beard

Added edit when I started this post there were no other post to your thread,  I am slow at typing I guess!


  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV

Post Edited (White Beard) : 4/25/2009 8:44:51 PM (GMT-6)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/25/2009 8:05 PM (GMT -7)   
Thank you Lindaloo, Fatherjohn & White Beard for responding. White Beard you said exaclty what I was thinking when I started this "Maybe with the help of others we can also help each other move forward."

I don't have answers either. But I think we're all exploring similar issues - or maybe struggling with them is a better word - even though our details may differ. It is scary to be sure. And White Beard, it is tough to ask for help. Oh, how I know. As simple as once again I've got to ask my cousin to help with picking me up when I have an endoscopy (and maybe the colonoscopy, too....god, I dread having both, but that's for another thread!). When you live alone and things start going wrong with health you need to ask a lot more than others do. And it's hard. Because others have their lives, too.

Fatherjohn - yes, I went to see the cats again this week. A little improvement with my two "boys", but not enough. And there'a another cruelty case but he's a real sweetie so I'll be surprised if he's still there in a week or so.

I hope we can keep struggling together with our questions and quandries. And the insights we gain together.

PaLady

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 4/25/2009 8:36 PM (GMT -7)   
I really wish I could answer this question. I have been struggling with it a lot these last several days. Maybe some more pondering time will bring me to some basic conclusion. I haven't read anyone else's comments yet. My eye is too bad tonight to read much of anything, or even skim for that matter.

Skeye

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 4/25/2009 10:49 PM (GMT -7)   
PALady
I posted before how I kind of isolated my self alittle, I have always been pretty self sufficient, and of course I had my wife there to help it was alway a team thing. Now it is not, and I am not comfortable having ask for help, and I have no famiily of any type any where close by. So the ones I have to go to are friends, and it is sad but I few close friends, I am working on that, but to be honest, I do consider most of you folks here closer friends and family than what I have here.......does that make sense? I do hope you know what I am trying to say? But with CP sometimes it is easier to stay in and be with all of you on the computer, it is late I am rambling, so.......

I will say Good Night

White Beard
  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/25/2009 10:55 PM (GMT -7)   
White Beard,
It makes PERFECT sense. I understand 1,000%! And you're definitely not rambling!

I think many of us here have posted how the friends we had often drop away once we're unable to do things. And work was a good way for me to have people around, too. I do have a lot of extended family around, but mostly they are very busy with their own lives and can help me out occasionally but not on a frequent basis. It is also hard, I think, to make new friends when we have limitations. I can't even sit through a movie and enjoy it. The things most people want to do I either can't do because of health and/or finances. So yes, I also feel closer to the people here than I do to any friends!

PaLady

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 4/26/2009 12:51 AM (GMT -7)   
I think it's best not to look to much into the future or the days/weeks/months ahead otherwise it all becomes quite overwhelming. I take it one day at a time. At the end of each day I thank the Lord for helping me get thru that day and that perhaps tomorrow will be a liitle bit better. Prayers are very powerful. I have a lot of people praying for me and I pray every day. I also believe strongly in the help of our family and friends in getting us thru each. They truely can be what makes your day just a little bit brighter. Look at the small things in life, take joy and pride in those little steps you make each day. You may fall the next day, but it's important to try and pick up shoes even just a little the next day. My BIG motto is taking it one day at a time as each day is different.
I wish peace to all my friends here!! We can all hang in there together and support each other.

Suzane

angel8
Regular Member


Date Joined Apr 2009
Total Posts : 109
   Posted 4/26/2009 3:44 AM (GMT -7)   

This PAlady is one of those mind boggling things that we are destined to pour over whenever anything in our comfortable lives change,to me this has just been another bump in the road of life.

For me the transition from thinking about the future and actually being able to live with it came when I stopped worrying about and begin doing something about it. I thru myself into the melee of "living" no matter what that entailed versus trying to figure it all out and making a plan. CP is not something that came with step by step instructions and the more I tried planing anything in my life around it the worse it got. Now this is much harder place to get to for some then others as we all know some folks are planners and others are well just doers. Fortunately for me I was a doer all my life. I far too many times pre CP jumped without thought and landed somewhere I would have rather not been at times but in the end it has certainly paid off,having that jumping without thinking virtue in me.

My guide is simply for today,like the previous poster said. If I can make this day the best I can then tomorrow will work itself the same way if I am lucky enough to be gifted with it and that in itself is part of the clue here,how do any of us know if there will be that other day or days to worry and fret over?

In a life surrounded by medical crisis,health issues induced by the very illnesses or injuries that brought us to this road and even the very meds and treatments we are using to endure the road can and many times does cut short or lives and makes the guarentee of another day,well less likelier then if we werent here doesnt it?

I take this day for all I can, I milk the most out of it and squeeze whatever I can from it remembering to stop long enough to let those around me that care know I also care and leave them if I have to with as many warm memories of our time together.

In my own words I dont have time to worry and plan for a day or time that may never get here. I have far to much living to do today and thanks to CP this is the way of my life as it stands.

I have found that looking at my life in these terms of minutes,hours,and a day I do not become so overwhelmed by what could have been or was and is no more.

I know this doesnt work for everyone as some have to have that plan for tomorrow and it is part of their make-up,the calm that brings peace to them it just isnt so for me.

When I lie down for the night I know I have done all that I can do for this day the best that Ii could have done it and take with me the memories of days gone by and the dawn is soon enough to worry about the hours to come.

Blessings and peace to each of you and here is hoping that every one of you finds his or her way thru this which life has dealt you without losing yourself in the processes of it.


Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 4/26/2009 1:42 PM (GMT -7)   
I know what you all mean about relying on others to help you out is hard. I have a 38year old daughter that has two small children. Just today She did my grocery shopping and took me to church. I rely on her alot for driving me places and I feel bad for having her go out of the way for me all the time. My husband says I shouldn't because I watch her children every day for nothing, while she works, but I wouldn't change that for anything in the world and do it gladly. She, on the other hand, is working five days a week and raising her two children without her husband for the most part. He is working very hard, but out of state, so a lot of the responsibilities fall upon her shoulder and it shouldn't be that way.

One thing that I do have is a cleaning gal who is a friend to me. She will also do jobs for me that are extra from the cleaning and says that one day if my health fails to where I can't do for myself, she will be there for me to help me. That I feel good about because I will pay her a little for the extra jobs. She is a sweetie.

I am grateful that I still have my husband too. He helps out to the best of his ability, but he is in poor health as well. He suffers from depression and a bad back too. So yes, life is tough sometimes, but I just plug along each day and do the best I can with what I have on hand or who I have on hand for that day. Thank God for all of you, my CP family. Without all of you, I don't know how I would survive!!

Lindaloo
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/26/2009 2:09 PM (GMT -7)   
i learn a little from reading each response. Angel, I know with all you've been through, you've gained a lot of wisdom, so I know what you say hasn't come by way of any easy road. Or just CP for that matter. So I truly respect your thoughts.

I'm actually not a big planner in life. But sometimes that can come back to bite you! I think when I said "reinvisioning" I wasn't referring so much to planning as a recreating of sorts. Some of you have a "base of operations", so to speak. Even having a financial base, even if it's a small one, once you have it you know your limits. And I've never cared whether I earned a lot of money, as long as I was doing something I loved. My work was my love, though, and losing that is like losing my family - because I don't have a husband or children. So I stand a crossroads, like White Beard, Fatherjohn, and others and there can be a lot of roads in front of us. We know that CP will be a companion regardless of the road we choose. I want that to take as much of a back seat in my life as possible, and Angel you're an inspiration in that regard. To have lost a child and so many others, and still have your vision is truly meaningful. It was actually your post on the other thread that helped inspire me to start this thread. So I hope you see it as much more than planning, but more as a creative journey.

I have been looking back far too long. Trying to go back to what was and can no longer be. Looking ahead means letting go of what was (ouch), but I want to try to see my life as a bit of a blank canvas now. I will never have much money; will always been struggling in that sense. But within the limits that I now have, what could I paint on that canvas? What colors are available to me, and which must be put away? I'm also not much of an artist, but for me this process comes much more from the gut and the intuitive side trying to inspire my eyes so I can see something other than bleakness. I can look around and be grateful for some things now, and see beauty, but there is not enough meaning for me. That has tended to come from using my intellect; that's just part of who I am. I've got to find some new ways to put that into my life.

The planning stuff, though, there are things that need doing. That's the "Scarlet O'Hara" stuff for me! For me, if can see some possibllities take shape, maybe at least know that I've found the seeds I want to plant, I can release some of the bonds I've put on myself by hanging onto the past.

Ok, rambling again!

PaLady

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 4/26/2009 6:42 PM (GMT -7)   

PALady

I have been longing to get back home today and to get on the computer and get back to my friends and family here on this forum. PALady You said:("Looking ahead means letting go of what was (ouch), but I want to try to see my life as a bit of a blank canvas now.") That is exact how I feel, but I have been dragging my feet on the letting go, the house should have already been up for sale, the list dividing stuff up should have been to the lawyer a long time ago, I should have gotten the stuff done, I made excuses, why I couldn't do it, ,and not because I have changed my mind about the divorce, I haven't!  It has to be! My wife even though she wants the divorce is doing very little to help I guess she figures since I filed I should do all the work. The real reason I have been dragging my feet I think is because  I hate the idea of letting go of the house, and some of the belongings, and just "letting go of what was"! It doesn't help matters any that I do not have a plan or any idea of what, is to be! ("not knowing what I want to paint on that blank canvas")! It is not just the idea of letting go of my past, but also knowing deep down  in my heart that the "past" can never ever be again, and my future is going to be different, and I don't have any idea what it is going to be, because right now it is a "blank canvas"!

 I am sure not ever one here is approaching this crossroad in there life, I am, PALady is, sounds like fatherjohn is too, I am sure that there is others here besides the three of us! The only thing that seems certain is that CP will be with us on the journey down this road.  How ever we paint our canvas, CP might not pick our colors or even what we chose to paint, but it will guide the brush strokes that we make!

 Today has been a very difficult day, I have been at the "outlaws" house all day today. My father inlaw died this morning he was 92 or 93! This is only the second time I have been up there since we anounced the pending divorce in January! So besides being a very sad,and difficult, day, it has also been a somewhat awkward actually very awkward day!. Her mom ( my mother inlaw) was glad I was there, even if other family member weren't!  I had taken care of my father inlaw for many years doing his meds for him and taking him to the Doctor and actually being an interface between him and his Doctor, so we had been rather close! I have lost both of my parents quite some years ago, so my wifes parents have been mine! I know this is not and easy time for their family as they have never lost any direct family member before. Anyway in a situation like this when there are friends and family members every where and you can't even find a good comfortable spot to sit down it is tough! And I definitely didn't want to let them know I was hurting or in pain, they have more than enough pain of their own right now! After 6 or 7 hours, I just could not stand it any longer, and I had to come home!  As I mentioned in the beginning of this post, (and I do feel some what guilty for thinking this or saying this,) .. but all day, I have just wanted to come back home and get on the computer to be with my friends and family here at this forum.I know that might sound terrible of me considering the circumstances! But at least here, I know that you all understand what it is like to have CP and that is one thing my outlaws have never ever understood. Many members of that family think it is terrible that I am on disability, and some even have made nasty comments about me using a cain! They say I am to young, and I act and look like an old man, as if this was my choice!! Their attitude hurts and angers me!

PALady this is Rambling what you did wasn't!

White Beard



  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV

Post Edited (White Beard) : 4/26/2009 7:52:58 PM (GMT-6)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/26/2009 10:05 PM (GMT -7)   
White Beard,
That's definitely not rambling. And I think fatherjohn awhile back had some insights about what emerges from "rambling" (that being positive things in many cases), so I'll try not to feel guilty for rambing if you do the same!

I am so sorry about your loss - and it does sound like losing your father in law was a loss for you personally, and yet now you face the challenge of a day like today, plus probably other services, and having to be around people who are less than supportive of you. And less than comfortalbe. No wonder you wanted to get back to our family. I don't blame you. I often feel the same way and that's even when I'm at a pleasant event like a birthday or something, because I still feel so isolated from normal living.

Strange how this kind of event occurs for you right smack in the middle of the divorce process. Sometimes it feels ilke life has a way of putting periods at the end of sentences when we don't want to. And like you, I don't want to let go of what was, what might have been, etc., etc., etc. but yet it's the only way. Trust me, I haven't gotten there yet. It's sort of being in that place for a moment, and getting a glimpse that maybe there is something yet to be painted on that canvas, and then being pulled back to looking at the old painting, or the life I expected to paint (like fatherjohn's dream). And for many of us all that takes is looking around at our surroundings. What to a certain extent have been comforts, but which no matter what we want can't be kept that way for much longer.

I'm sending you hugs of support and sympathy, as well as empathy, White Beard. I hope these next few days aren't too hard on you.

PaLady

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 4/26/2009 10:30 PM (GMT -7)   
Thanks PAlady

I see another problem possibly coming up and I should know for sure tomorrow, the funeral arrangements are not finnished, so I asked when they thoought the funeral would be, they said Wednesday or Thursday, allot of my wifes brothers and sisters live in Florida and are flying in tomorrow. Anyway they said they are hoping it can be Wednesday, personally I am hoping for Thursday, because at 11 AM Wednesday morning I have a doctors appointment with my neurologist, and it took me 5 or 6 weeks to get it. And the Doctors is 50 miles away in the other direction. I just can't cancel the appointment, as I have some major problems I have to have addressed. But yet I want to be at the funeral, and if I don't show up well,......... I know I shouldn't care what they think, but....anyway I will find out tomorrow when the funeral is, but either way I have got to go to my Doctors appointment!

Thanks for all your support PALady it means allot to me and I really do appreciate it! You know I really don't look forward to the next few days,

White Beard
  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


Seajay
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 4/27/2009 12:01 AM (GMT -7)   
White Beard I too, send my sympathy and support to you. For all of you here, I met White Beard on another forum and with all of his problems, pain and everything else he stepped in and helped me out. He was so giving to me, not thinking about himself. As I read this thread, I find you all to be very caring and wonderful people through all your pain. It is wonderful to talk to people who understand and have compassion for everything we are going through. As I have always lived as a single person, on my own since I was 18, it's hard for me to open up to people. My life was my job for 47 years as a Medical Techologist. My dear mother told me not to isolate myself like she had. Well, 4 years into retirement, I have done just that. My slate is blank. I have never gone through a divorce, but White Beard and the rest of you, I think I have a sense of what you are living. I'm at a crossroads of sorts myself and must make some decisions of my own. My sister and niece who live by are not here for me and my brothers, one in Michigan and one in Virginia, are too far away. Over the years the only person I depended on was myself. Now I find I have to ask people for help. This is so hard. I've always been very proud of taking on life's problems on my own without anyone else's help. Now I am opening up to all of you and learning how I need to let other people into my life that truly care and want to help. Look who's rambling now.lol

"..yesterday is but a dream and tomorrow is only a vision, but today well-lived makes every yesterday a dream of happiness and every tomorrow a vision of hope. Look well, therefore, to this day." Author unknown

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 4/27/2009 1:27 AM (GMT -7)   
White Beard,

Tell your doctor about your plans to attend the funeral with the naysayers
and the people who are not playing on your side. I personally think it's
the last place you need to be right now. My son does not accept my Chronic
Pain. Because of his attitude toward me, I've shown him that Mom is
capable of nonaccepting too. It's too bad and it's sad but that's the way
it is.

Stay with us. Together we will "Reinvision The Future". We shall stroll into
the sunset.

Sometimes I shout at my husband and say, "Gimme back the past!"
During my rant, i truly mean it.

It doesn't happen very often. For the most part I just go step after
step chanting, "The past is dead. The future is imaginary. All we have
is the eternal now moment."

"Catch your dreams before they slip away." Ruby Tuesday and Pamela

angel8
Regular Member


Date Joined Apr 2009
Total Posts : 109
   Posted 4/27/2009 2:19 AM (GMT -7)   

PAlady as usual I am humbled here for saying some word or putting some thought here that gives way for another to see light where once there was none ot little,inspiring? I think not so much as proviking you to rethink those thoughts of your own.

It wasnt alway this peaceful of a place for me,this life as a CPer, I have stood at so many crossroads that the names blurred and the need to run was great without direction,fear,the unkown, Oh I am sure.Many times I did just that!

My work was also who I am sadly to say it came sometimes before anything else in my life,kids,significant other,family time,the reunions I missed,the holidays I didnt make,the birthdays I came in late,it is so shameful and brings much remorse for me to ponder on. I regret the memories I never made in that way but I had this overwhelming need in me that I needed to be needed and my job fulfilled that for me,those were the times I found my peace in the hectic workforce of a paramedic running simply on adrenaline rushes of the moment.

I cant say where in this CP state I learned I am still that same person but that from it I had grown to be better more placid in my wants in and needs to be needed and chnaged how I interpreted those needs and their fulfillment but I did.

Maybe the losses? Maybe the loss of all that I was? I cant really say.

I certainly know that your at that place where you will make it as others I see here. Once you accept and try forming plans with the restrictions you hold,your journey to the end is not far. Like a dress that belonged on you before it is still the same dress after the alterations caused by your changing.like aging,or losing or gaining weight,those alterations are necessary for you to ever again wear that dress which you treasure.

My largest battles in this travel should not have been. My greatest anger and times of despair were of my own making. I got caughtup in the hows of raising 5 kids on one weeks pay a month,that was about what SSD was going to pay me versus my salary. I panicked, I raged, I walked near insanity out of fear I wouldnt be able to do it and losing just one of those kids even though it woouldnt have been thru death was well more then I could fathom after I had experienced already one loss.

Wgere do I get the money for shoes,clothes,the things that they were use to? The things all teenagers need to compete in an already peer pressure state? How do I live on as much money a month as I was use to spending each week at the grocery alone? They like me had already suffered so many losses in their short lives how could take away anything more from them? Just rethinking of those times and it how it felt to be that afraid,walking that close to insanity,makes me cringe and sick.

My support was all gone,my anchor in life,my parents,my husband and friend of life as we grew up together,my small child and their sister,gone without their being able to understand why they were losing everything they loved. I was going to fail them as well and fall of this edge and their loss would be far too great. My daughter of 15 attempted suicide that year and came way way too close for any comfort. I did not realize my standing on the edge was effecting them in great waves, Oh God it was much too much to bear even the thought of knowing my despair had become theirs as well.

I got mad, I got oh so angry! The rage inside of me that life or God or whomever was incharge here was NOT taking anything more from me! I would fight to the death for them for my kids for myself and the person I knew I was and always would be. At this time I was still foundering in the system for even the measly SSD, I was trying to raise those kids in the welfare system and subsidzed housing as we lost the home we owned early out in this game and I had very little equity in it.

I got up one day with so much I amger I didnt know I had it in me and well to say it scared even me is an understatement. I was like a tornado and I was determined to leave devastation behind when I was thru. I got on the phone the internet, I talked and ranted and I sought every ounce of informationI could soak up about everything that needed to be fixed in my life. Begining with I needed and deserved my SSD, I had worked and paid into that system, I had medical files and documentation that said I would NOT work again for a long long time if then.. I had been to 2 of their Docs and had not any idea what those reports said, I requested them and they said as well what my Docs were saying,then why was I still being denied? I hired a Attorney, I wrote my Congressman, I called the ALJ office on weekly basis to check on when I could expect a hearing date.they knew me by name,they would remember me.

I stopped waiting for help to arrive and went looking for it even though the asking was horrific for me,coming from parents that grew out of the depression and hammered into us that work ethic,take care of your own, I begged if called for I pleaded if it worked and stockpiled so much info I had to go to the goodwill to find a filling cabinet to hold it all. I have resources ontop of resources and I used them. I learned that knowledge was the ultimate power to hold. Knowledge of my health issues,medicaid,medicare,SSD,welfare,foodstamps,subsidized housing vouchers,where to go if we ran short of money or food,or couldnt pay the utility bills, and who would help if the car broke down,all of that info and all of those palces I didnt even know existed out there!

I learned that there was nothing that was too hard to ask for if it meant a difference in my kids lives and it wasnt.

I have fought back and won! You might say I learned to work the system. I didnt feel guilty over one thing I had asked for or how many times I had asked. I had given my virtually to helping others and this time I was the one needing help. I paid taxes out my rearend, I made good money, I gave to the blood bank,the United  way, the March of dimes and the list goes on when I was in the place to give. I had paid my dues to this organization and it was time I got something back. I had to take care of my kids and there was nothing short of dying going to stop me.

Somewhere in there the anger gave way to something else and my life evened out,the turmoil boiled down and the years flew by,my kids became adults,and had kids of their own. There isnt a moment that I regret nor a time I dont know they appreciate and understand all that I did for them and how hard those days were. Has it made them better for it? I lkie to think so,they dont squander their money,they dont let time pass them by and they make memories with their kids and family. They are good responsible folks and they give of themselves for they know first hand they might have to ask someday for something in return.

This is our Motto and it belonged to my Mother, " Just do what is right and everything will be alright" It took me far too long after she left me to understand just how complex those few words were but I did and from what I see coming from here many of you will as well.

Peace to all of you and pain free days. When the crying is over and the grief of loss is no longer like a dagger,living returns sometimes without a sound. Our losses of all that we were are just as dramatic as death and we too will grieve for all that was and is no more within our reach or touch.


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 4/27/2009 2:39 AM (GMT -7)   

Hi everyone,whitebeard i agree, if the funeral is wednesday, tell your dr. My son broke his finger on a day I was suppose to see my specialist, I rang and they slotted me in after I'd finished with the frature clinic. Funerals happen, I am sure your specialist would help. But goodluck with the outlaws too, very hard with the divorce, you must be so strong to deal with all the mixed emotional issues, not an easy time for you at all.

I think we are all hoping for miracle cures in the back of our unconscious brains. I watch my kids swim and run and play soccer and its like an extension of me out there. In my head I'm on that field too, my memory of that freedom of movement is so strong. I feel I am grieving for the old me, it really hurts my kids have no memory of me kicking the ball with them. I keep thinking do I have unrealistic expectations that I will be pain free again, am I searching for something that doesn't exist? Should I be happy with what I have?

Palady, I like the idea of the blank canvas. I do try and just enjoy the moment, I try to keep a smile on my face but I'm very much a Scarlet O'Hara too. I find everyday bills and decisions very difficult to deal with, I can't sort of cope with the basics. I have to build myself up to just do the necessities, Keep getting cross at myself. Asking for help is very hard, too vulnerable somehow.

Pamela it must be so awful with your son in denial, so hurtful on top of all your pain. Love to you all and welcome Seajay.


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 4/27/2009 12:53 PM (GMT -7)   
PALady and Pamela, Seajaay, golitho,
Thanks so much for all your support, it looks like things are going to work out OK, the wake is Wednesday afternoon, and my father inlaws funeral is Thursday. I will have to take an extra pain pill or two as it is going to be a high mass funeral. Those ar always long! The hardest part will be dealing with all the family members, especially a couple of my brother inlaws the never wanted their little sister to marry me in the first place! And in all these years they has never been,.......well let us just say we get along I guess????? rolleyes   Anyway I will be able to make my neuro appointment. yeah And the rest is what it is. Just another part of the journey going to the crossroads I guess!
PALady I Thank-You so much, I know you don't E-mail, or least that is what I gather from the way you talk in your post, but mine is available, and I am also in facebook, but only friends can see my art pieces! smilewinkgrin
White Beard


  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV

Post Edited (White Beard) : 4/27/2009 2:19:37 PM (GMT-6)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/27/2009 10:41 PM (GMT -7)   
Hello, dear friends,
I saved the best thread for last tonight, but my energy level is fading. Nothing to worry about White Beard. I was out all day and watched a lot of TV tonight (I'm a Dancing with the Stars fan!). Just feel really tired. Probably meds. Oh, well, I'm not hurting a lot at the moment. The trade off.

I'm glad it's going to work out for you White Beard, but remember all you need to do is what YOU need to say your good-byes to this man that you helped, and you don't need to hang around to feel more emotional pain than you've already got going on. Just leave whenever you're ready!

Seajay - I want to welcome you and encourage you to start a thread to introduce yourself to everyone. But we have some things in common I'll come back to another night when I've got more energy!

Angel - thank you so much for sharing all those details. I think really seeing deeply into how someone moved through their process - someone like you who's really being honest and open - is helpful, at least to me.

White Beard I also kept thinking today about how your work with a piece of wood or a hunk of clay,...how you describe finding the unknown form that emerges as you work (I'm not saying this very well, but you did in another post) - that's kind of how our lives are now. A blank canvas is two dimensional, but wood and clay are three dimensional. Maybe you can say this more clearly; hopefully, you understand what I'm trying to say!

This thread has been on my mind all day. It's an important one, at least for me.

Hope we can continue to share our questions and journeys as we find answers, slowly but surely.

PaLady

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 4/27/2009 10:57 PM (GMT -7)   
PALady
I hope you are alright! There is something about your post.........Your sure your alright?
Thank-You for the advice and you know I think I will take it! As usual your advice is good and sound!
It is an important thread and I am very glad you started it!
PALady Maybe it is the Nurse in me but I still worry!

White Beard
  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 4/27/2009 11:12 PM (GMT -7)   

PAlady, we just arrived home and after dumping the suitcases and getting ready for bed, I wanted to sign in and mention something about the canvas. We spend a lifetime painting the canvas, starting over several times and then we think we know how it is going to turn out. We see it clearly in our mind but it fails to materialize on the canvas. Then it happens, what we have already put on the canvas starts to disapear. It seems that we try to stop what has already been painted from vanishing but we are powerless to stop the vanishing. Now we are left with something that does not resemble what we thought it would and we can't seem to find a new vision of what we a re to paint. Now remeber I can't paint to start with and I am in awe of people who can start with a blank canvs and create something that is so lifelike and with a depth that is hard to describe. I am afraid that I won't be able to get anything on the canvas of life that I will recognize or have any depth. Crossroad? I guess we can call it that. Uncertainty, confusion, feeling that we are a victim of being robbed. But life does not wait for us to figure it all out. We just try and keep up with the life that comes our way each day, not knowing ahead of time what it will be. Personally, without my faith, I am not sure what I would do. Everyone has to have something or someone to keep us going. If we lose that, we are in danger. As we loose things, it can cause us to fear as we don't want to loose that which has kept us going. That brings hope.

I guess that rambling can be good as we just let things come as our mind rolls. I hope this makes some since and we can get up tomorrow and start a fresh day of trying to figure out what will be on the canvas. Blessings!


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2281
   Posted 4/27/2009 11:51 PM (GMT -7)   
John-
What a great example. It kinda reminds me of something my cooperating teacher told me when I was student teaching: in the end the only thing that really matters is what your goals were & whether you got there. Thanks so much for sharing.

PA-
I've been thinking a lot in that direction recently. Back in college we were encouraged to write out our life mission. Basically mine was to love God wholly, serve others with generosity & to work for justice in marginalized populations. When I had to leave teaching due to my health, I felt there was no way I could continue doing parts 2 & 3. But I found a job 6 months later working in the legal field & my hope was renewed. Then my CP took a turn for the worse & I felt I couldn't do 2 at all, could barely work & I gave up on my number 1 priority altogether b/c I was just bitter all the time and love & bitterness definitely do not mix.

As you know, I've recently lost my job. I'd like to go back to teaching, but I'm not sure that will ever be possible with my pain. It's not as easy to get out to work or volunteer as it used to be & that makes things much harder. But I've realized that at the end of the day the life mission I wrote out as a healthy 18 year old is still possible. I can still love if I'm willing to set aside bitterness. I can still serve, albeit in a different way & not as frequently as when I was healthy. I can still work for justice, but in a different way -- I have partnered with a disability advocate who well understands the unpredictability of CP & who still finds ways to let me work in advocacy for those who need assistance accessing resources, battling for insurance or arranging care (which has the added bonus of giving me an outlet for all my aggression :).

I'm not saying you can follow my pattern exactly. Just that I found that when I stopped thinking small (what can I do today?) & broadened the picture (what have I wanted to accomplish over my entire lifetime?) I found that it is still possible not only to have meaning in my life, but to attain the meaning & purpose that I myself have always wanted for my life. I don't know whether that might help you or not. It seems some people are better helped by thinking about the little things, the daily things & focusing on those. But I'm not designed like that. I need the big things in life. I need to feel like my life can have a bigger purpose than getting up & getting dressed on a given day.

Now, I can look at those days when I can't do much more than get dressed as stepping stones to get me through to the days when I can do more to life out my dreams & goals. The individual frames may not look at all like what I pictured, but I think the movie of my life is playing out exactly as I hoped. It just took stepping back a bit to realize it.

Well, I don't know whether that's helpful at all, but I pray that maybe a piece of it will be encouraging to you.

Wishing you & your kitties well,
frances smilewinkgrin

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/27/2009 11:58 PM (GMT -7)   
Fatherjohn,
I'm so glad you posted that while it was still in your mind. I have to reread all of this tomorrow.

White Beard....hmm, wonder what you're sensing. I am just tired and foggy and I should go to bed. I wonder why I don't. Sometimes I'd rather stay up most of the night when the world around me is dark and sleep through a chunk of the day to avoid the life I'm missing. But I'm also avoiding that paperwork stuff that does need doing.

It just seems that if I do a little bit in a day - having to concentrate on even one thing (like now I need two tires for my car so I've been calling around getting quotes, etc.), and I worked for my couple of hours today. My brian really IS all over the place tonight. Maybe that's what you're sensing W.B.

All the uncertainty, confusion, loss fatherjohn just described - that drains such energy. Am I being embalmed while still alive?

Ok, that's definitely enough!

PaLady
Frances - we were writing at the same time. Glad you posted. Visiting the kitties really does have something to do with my canvas. I would definitely pain some of their faces on it if i could paint!

Post Edited (PAlady) : 4/28/2009 1:04:57 AM (GMT-6)

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