Donna
Posted by
DH, on
Wed Sep 21, 2011 6:44 pm
Dawneagle, you sound like you have alot of strength and courage. Being diagnosed with MS is a tough pill to swallow. Several of my relatives have it .They don't know if it's hereditary though.I wish you well. Stay strong and keep blogging. You are a good inspiration. Donna
Donna
Reply by
Past Member, on
Wed Sep 21, 2011 9:54 pm
I am sending thanks to all of you, Donna, Colm, BEG, LALU, Death, Ed, and all the rest. Yes, I have courage, skills and all that stuff..... and things are getting so very much worse. I have a very ill grandson and some other issues - health and more, that are just about to put me under. Those boot straps are not serving me very well. I think I can't handle one more thing but there is no other option at this moment. Still, they keep coming one by one.
I know I have to hold on and put forth the positive face with family and I am so very glad I have you on this site to back me. That is one thing we do well here - right. Support, ... I will let you know when things change. Hold sacred space for me - however you do that. My mantra... "this too shall pass." It will be okay again at some point. We all know what it is to go through and come out the other side. I know that most of you have been here and worse. Thanks to the site and all of you, it helps. Carol
I know I have to hold on and put forth the positive face with family and I am so very glad I have you on this site to back me. That is one thing we do well here - right. Support, ... I will let you know when things change. Hold sacred space for me - however you do that. My mantra... "this too shall pass." It will be okay again at some point. We all know what it is to go through and come out the other side. I know that most of you have been here and worse. Thanks to the site and all of you, it helps. Carol
Reply by
Primeboy, on
Wed Sep 21, 2011 10:27 pm
You are in our thoughts and prayers, Carol.
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Reply by
funnygurl, on
Wed Sep 21, 2011 11:30 pm
I heard on the news today that there has been a break through in the cause and possible treatment of MS. They have figured out that there is a shortage of a natural steroid in the brain and are going to put patients on steroids to see if they can treat it. They are optomistic about curing and possibly even preventing MS
http://www.cbc.ca/news/health/story/2011/09/21/multiple-sclerosis-brain-neurosteroids.html
http://www.cbc.ca/news/health/story/2011/09/21/multiple-sclerosis-brain-neurosteroids.html
Reply by
Lalu, on
Thu Sep 22, 2011 8:30 am
Hi, Carol.
I was thinking about you alot tonight, so figured I'd track down your most recent post to see the latest update of how you're doing. Even though I read it before, I read again your post of Sept 20th, in which you mentioned your friend who said you have two options: change the situation or change yourself. Since the situation is what it is, it looks like changing yourself is the only game in town. There's a third option, which I think most of us choose without even realizing it, before moving on. Just like making no decision is actually making a decision, before making any changes, speaking only for myself, I usually give myself a moment or three to breathe. It sounds as if you feel like you're expected to do something, but you're letting yourself absorb the information you've been given instead of acting without thinking first. Giving yourself that moment to breathe is actually doing something, although I know I tend to feel like I'm wasting time when my action is more on the passive side. Before jumping into anything, I don't think it's a bad idea to not only decide in which direction I want to go, but to also look around first to see where my starting point is.
In your next post, you mentioned one expression I've come to loathe a little more each time I hear it. You let us know that you've got one finger in each bootstrap and you're getting ready to pull. You don't need to explain anything to the rest of us, or to anybody else. You'll pull when you're ready and not a moment sooner. I've gotten so tired of people who know nothing of my situation, telling me exactly what it is I have to do to make things better for myself. I finally learned that the first thing I have to do is to not listen to anything they tell me. The person I need to listen to is right there in the mirror. You said you're looking for something stable to basically lean on, (lean on being my words, not yours). Well, here we are. As a group, I think we're one stable bunch. We're here whenever you're ready the same way you always seem to be here for everyone else. I sure hope nobody minds me saying we instead of I. It just seems so clear to me that as a group everyone here is here for each other. Last week, during a chat on Facebook, I was told outright that I need to pull myself up by the bootstraps. My first reaction was to log off, so that's what I did; that was my reply. It didn't pull me up, but I sure felt alot better. So please give yourself a break (hope that doesn't sound like I'm telling you what to do - sure don't want to sound like the people who make me crazy). Do what you need to do for yourself, not for anyone else, not because someone else has decided what's best for you. Rant if you need to, contemplate in silence if that's what it takes, do any research you feel you need to do to come to an educated decision, go skiing if it helps. Getting input from others can help you make decisions, but they're your decisions. The rest of us are background noise, waiting in the wings to take YOUR directions based on what YOU need. You'll take care of pulling on those straps if and when Carol (and G-d, if that's who helps guide you) decides it's time to pull. We'll be there to help with a hand up.
I was thinking about you alot tonight, so figured I'd track down your most recent post to see the latest update of how you're doing. Even though I read it before, I read again your post of Sept 20th, in which you mentioned your friend who said you have two options: change the situation or change yourself. Since the situation is what it is, it looks like changing yourself is the only game in town. There's a third option, which I think most of us choose without even realizing it, before moving on. Just like making no decision is actually making a decision, before making any changes, speaking only for myself, I usually give myself a moment or three to breathe. It sounds as if you feel like you're expected to do something, but you're letting yourself absorb the information you've been given instead of acting without thinking first. Giving yourself that moment to breathe is actually doing something, although I know I tend to feel like I'm wasting time when my action is more on the passive side. Before jumping into anything, I don't think it's a bad idea to not only decide in which direction I want to go, but to also look around first to see where my starting point is.
In your next post, you mentioned one expression I've come to loathe a little more each time I hear it. You let us know that you've got one finger in each bootstrap and you're getting ready to pull. You don't need to explain anything to the rest of us, or to anybody else. You'll pull when you're ready and not a moment sooner. I've gotten so tired of people who know nothing of my situation, telling me exactly what it is I have to do to make things better for myself. I finally learned that the first thing I have to do is to not listen to anything they tell me. The person I need to listen to is right there in the mirror. You said you're looking for something stable to basically lean on, (lean on being my words, not yours). Well, here we are. As a group, I think we're one stable bunch. We're here whenever you're ready the same way you always seem to be here for everyone else. I sure hope nobody minds me saying we instead of I. It just seems so clear to me that as a group everyone here is here for each other. Last week, during a chat on Facebook, I was told outright that I need to pull myself up by the bootstraps. My first reaction was to log off, so that's what I did; that was my reply. It didn't pull me up, but I sure felt alot better. So please give yourself a break (hope that doesn't sound like I'm telling you what to do - sure don't want to sound like the people who make me crazy). Do what you need to do for yourself, not for anyone else, not because someone else has decided what's best for you. Rant if you need to, contemplate in silence if that's what it takes, do any research you feel you need to do to come to an educated decision, go skiing if it helps. Getting input from others can help you make decisions, but they're your decisions. The rest of us are background noise, waiting in the wings to take YOUR directions based on what YOU need. You'll take care of pulling on those straps if and when Carol (and G-d, if that's who helps guide you) decides it's time to pull. We'll be there to help with a hand up.
Reply by
Past Member, on
Thu Sep 22, 2011 10:17 am
Lalu, beautiful letter. I hear you.
Thank you (and everyone). The world is a bit better this morning (not out of bed yet). Lots of overnight crisis but "I" am better - at least for this moment.
I sent the following note to a dear caring friend.
"Miracle morning. Pain is low. Symptoms are mild. Temp is cool 56 degrees ... 14 C, gentle rain and an easy, soft breeze. My little personal world is in order. I deserve it. Take care."
Must go. I am so glad you all are there.
Thank you (and everyone). The world is a bit better this morning (not out of bed yet). Lots of overnight crisis but "I" am better - at least for this moment.
I sent the following note to a dear caring friend.
"Miracle morning. Pain is low. Symptoms are mild. Temp is cool 56 degrees ... 14 C, gentle rain and an easy, soft breeze. My little personal world is in order. I deserve it. Take care."
Must go. I am so glad you all are there.
Advertisement
If you’re feeling anxious about what the current pandemic means for your on-going care, you’re not alone. That’s why we’ve created a place to find support with everyday care issues, including how to manage peristomal skin and pouch leakages.
Reply by
Lalu, on
Thu Sep 22, 2011 10:28 am
Thank you, Carol.
So glad to hear how much better you sound.
This is one morning I don't mind starting out with watery eyes.
So glad to hear how much better you sound.
This is one morning I don't mind starting out with watery eyes.
Reply by
Past Member, on
Thu Sep 22, 2011 2:07 pm
Okay Moe (I'm Curly by the way), what ya talkin bout? No damp eyes go un-noticed................
BEG
Reply by
Past Member, on
Thu Sep 22, 2011 4:01 pm
Oh Dawneagle, its good to hear you sounding better and long may it continue! You certainly deserve a few good breaks!
Will be offline I think for some time myself to get myself in order! So here's hoping there's better days ahead for us both! Take good care, Colm
Will be offline I think for some time myself to get myself in order! So here's hoping there's better days ahead for us both! Take good care, Colm
Reply by
Past Member, on
Thu Sep 22, 2011 7:18 pm
Funnygurl, I read the article about MS. I found it interesting. It does sound like they are making some progress. The posted responses were pretty negative but I think it sounds promising. Thank you for sharing the information. I will keep watching for updates.
In April I stopped all my meds. I am not taking anything now except thyroid - mine was removed 50 years ago. I also don't currently see doctors - many reasons. My symptoms come and go but so far nothing is worse without the drugs than with them and the side effects were not acceptable. And doctors were uncaring. So - nothing. Pain never stops - just varies in intensity as does associated mood.
However, I would take what meds I believed would actually make things better. Until then, I will do my best in other ways. My abilities are limited but my mind is active and my writing and art are doing well - for now. My hands work well most days.
For today pain is less than most days - the previous days were ______ - (I tried to find a fitting word) they were really bad .... The support from people here was (again) a life saver for me. The family situation isn't better but I am dealing with it better and that makes the pain and health better.
A suicidal bipolar 10 year old is another issue. Meds are necessary and we hope the next med adjustment will help things. It is sad and stress makes my problems worse so I must maintain myself to help him. Again I thank all of you for your support.
I was sent info about Stephen Fry (bipolar) and a documentary he did in 2006, Also, on the female singer who died recently that some of you commented on. I can't rmember her name now - another long time sufferer. Good info. So I am into research which is about all I can do on days my body won't work - most days. It does help me to shift my attention. And yes, I miss my RV and most of all I miss my freedom and my ability to travel - to get out and do things ... see things. I do love my little personal space with my treasures.
I trust that everything will get better. That there is quality ahead for us. Or that we will at least be able to cope better.
Dandare - I don't know what issues you have but appreciate you - please take care and let us know about you.
In April I stopped all my meds. I am not taking anything now except thyroid - mine was removed 50 years ago. I also don't currently see doctors - many reasons. My symptoms come and go but so far nothing is worse without the drugs than with them and the side effects were not acceptable. And doctors were uncaring. So - nothing. Pain never stops - just varies in intensity as does associated mood.
However, I would take what meds I believed would actually make things better. Until then, I will do my best in other ways. My abilities are limited but my mind is active and my writing and art are doing well - for now. My hands work well most days.
For today pain is less than most days - the previous days were ______ - (I tried to find a fitting word) they were really bad .... The support from people here was (again) a life saver for me. The family situation isn't better but I am dealing with it better and that makes the pain and health better.
A suicidal bipolar 10 year old is another issue. Meds are necessary and we hope the next med adjustment will help things. It is sad and stress makes my problems worse so I must maintain myself to help him. Again I thank all of you for your support.
I was sent info about Stephen Fry (bipolar) and a documentary he did in 2006, Also, on the female singer who died recently that some of you commented on. I can't rmember her name now - another long time sufferer. Good info. So I am into research which is about all I can do on days my body won't work - most days. It does help me to shift my attention. And yes, I miss my RV and most of all I miss my freedom and my ability to travel - to get out and do things ... see things. I do love my little personal space with my treasures.
I trust that everything will get better. That there is quality ahead for us. Or that we will at least be able to cope better.
Dandare - I don't know what issues you have but appreciate you - please take care and let us know about you.
Reply by
Past Member, on
Thu Sep 22, 2011 7:36 pm
Death, I have not previously addressed notes to death. I have cried out for it, asked the doctor to allow it, and raged against it. But, I have not written it notes.
I hope our coutinuous posts on your topic of ranting has helped you in some way. We all need to rant and/or cry at times. Then we get better. Then we laugh together. I love the jokes - even the groaners.
By the way, I consider death a dear friend and have no fear. I have always thought we should celebrate another person's successful completion of this process of life we are all going through. We learn, we experience, we cope, we laugh, we cry. Then at some point we are done. I have died twice and for me that is going home. There is no need to hurry because there is no time and no space and I will have had the experiences I came here to have. Then the perfection. I will understand it better when I get there again.
So, Death, I hope we support your educational experiences - joys and pains. It is called Life. Most of us choose to live it - as it comes to us. Not that we have a lot of choice.
Carol - 'dawneagle' I am the eagle of the dawn after some pretty dark and scary nights.
I hope our coutinuous posts on your topic of ranting has helped you in some way. We all need to rant and/or cry at times. Then we get better. Then we laugh together. I love the jokes - even the groaners.
By the way, I consider death a dear friend and have no fear. I have always thought we should celebrate another person's successful completion of this process of life we are all going through. We learn, we experience, we cope, we laugh, we cry. Then at some point we are done. I have died twice and for me that is going home. There is no need to hurry because there is no time and no space and I will have had the experiences I came here to have. Then the perfection. I will understand it better when I get there again.
So, Death, I hope we support your educational experiences - joys and pains. It is called Life. Most of us choose to live it - as it comes to us. Not that we have a lot of choice.
Carol - 'dawneagle' I am the eagle of the dawn after some pretty dark and scary nights.
Reply by
Possum, on
Wed Nov 30, 2011 8:39 pm
it was a long time before I dated. I had my ileostomy 28 years ago - half my life ago. My husband had no problem with it, but left 10 years ago - more about someone else , rather than us.
I had relationships with 2 people before my current partner. I was scared about telling them all. The fisrt one saw no problem. The second said he was interested in how it all worked. I started to realise the relationship was about me, not my appliance. My current partner of 2 and a half years is a very loving, caring man. Of course you have to tell them before starting a sexual relationship. hopefully by then they can see past it. It is a very difficult conversation to initiate. I started by saying I had a body image problem... well it's not actually me that has the problem but others...
I had ruled out ever having another relationship as you have. You just never know what's around the corner.
Best wishes, Possum
I had relationships with 2 people before my current partner. I was scared about telling them all. The fisrt one saw no problem. The second said he was interested in how it all worked. I started to realise the relationship was about me, not my appliance. My current partner of 2 and a half years is a very loving, caring man. Of course you have to tell them before starting a sexual relationship. hopefully by then they can see past it. It is a very difficult conversation to initiate. I started by saying I had a body image problem... well it's not actually me that has the problem but others...
I had ruled out ever having another relationship as you have. You just never know what's around the corner.
Best wishes, Possum
Reply by
Immarsh, on
Wed Dec 14, 2011 2:26 pm
Hi Friends,
I too read "Death's Rant", but I wrote a personal note, instead of posting...Now I think I'm sorry I did that.
I was a child when i got sick, and a young teen when I had my surgery. And now at 63 those 3 years of being sick are only seconds in time. And yet, some of the experiences during that short time, and in the years that followed, can still bring me to a rant. But that's when I only focus on the Bad. Life wasn't easy....and adjusting to an ostomy was a challenge. But at 15, I was thrilled to get on with real life, and I never gave the actual ostomy a second thought. It was just a part of me. I dated, I camped, I stayed out late and partied, I got engaged, & married, and then had my two miracle children. But illness plagued us, and I started to develop / collect medical issues. My marriage wasn't made in heaven and that began to deteriorate too. but I went on to college while married, and graduated with a BA and then Special Ed certification. Sadly, both my sons developed inflammatory bowel disease, and that was a heartbreak for me. The faced their challenges, took their meds, rode that roller coaster of illness and well being, but graduated, married, and both now have children. I sometimes think that "it's not fair", and life shouldn't be so hard, but all that grief, just makes the good times better. Today, I "sieze the day". If I'm well, I'm out and about....and if not.....I hope for a better tomorrow. I don't want to lose a "good" today....grieving about a sad past or an uncertain future.... But in my heart of hearts... Rants feel so good....Cathartic...and not as fattening as chocolate cake.
I too read "Death's Rant", but I wrote a personal note, instead of posting...Now I think I'm sorry I did that.
I was a child when i got sick, and a young teen when I had my surgery. And now at 63 those 3 years of being sick are only seconds in time. And yet, some of the experiences during that short time, and in the years that followed, can still bring me to a rant. But that's when I only focus on the Bad. Life wasn't easy....and adjusting to an ostomy was a challenge. But at 15, I was thrilled to get on with real life, and I never gave the actual ostomy a second thought. It was just a part of me. I dated, I camped, I stayed out late and partied, I got engaged, & married, and then had my two miracle children. But illness plagued us, and I started to develop / collect medical issues. My marriage wasn't made in heaven and that began to deteriorate too. but I went on to college while married, and graduated with a BA and then Special Ed certification. Sadly, both my sons developed inflammatory bowel disease, and that was a heartbreak for me. The faced their challenges, took their meds, rode that roller coaster of illness and well being, but graduated, married, and both now have children. I sometimes think that "it's not fair", and life shouldn't be so hard, but all that grief, just makes the good times better. Today, I "sieze the day". If I'm well, I'm out and about....and if not.....I hope for a better tomorrow. I don't want to lose a "good" today....grieving about a sad past or an uncertain future.... But in my heart of hearts... Rants feel so good....Cathartic...and not as fattening as chocolate cake.
Reply by
Past Member, on
Wed Dec 14, 2011 6:53 pm
Dear"Immarsh,
"I don't want to lose a "good" today....grieving about a sad past or an uncertain future...."
Doesn't get better than that my friend
!!!
BEG
"I don't want to lose a "good" today....grieving about a sad past or an uncertain future...."
Doesn't get better than that my friend
!!!
BEG
Reply by
shawng, on
Sun Jan 01, 2012 8:07 pm
I know how you are feeling friend. I have had those thoughts as well. I wish you the best of luck, and I hope things get better for you.
Reply by
Blacksmith, on
Sat Aug 17, 2013 8:37 am
I know that this is a real old posting but I just wanted to add this. love and a relation ship is very possible for all of us. we just have to wait for that special 1 to come along. as I have yes I have meet some 1 that understands and excepts me with my urostomy and sever ED. if we adjust are thoughts and additude we can live a fun 
and fulfilling life.
and fulfilling life.
Reply by
walderpeee, on
Mon Jan 18, 2016 1:17 pm
Anyone on this site live near Yerington, Nevada?? I have been reading this site for the last week, and can say I feel so at ease now. Knowing other people are having a difficult time like me, gives me so much hope for the future.
Would love to hear from any of you!
Micki
