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Re: The Worst Thing About AS
mrye4709 #174772 05/19/10 03:43 AM
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I think we all know what Dale is talking about. And all feel that pain. Some of us feel it so much it hurts to read that others are going through the same thing.

It's very hard to read it sometimes because in our desire to remain positive and optimistic, a visceral punch to the gut by an anguished, negative post like Dale's makes us reflect on our own negative thoughts and feelings.

But, we need to embrace this kind of post, and I give kudos to Dale for having the courage and honesty to post his feelings so openly. We need to embrace this kind of post because the more we gloss over our own sadness and our own negative thoughts, the less real our optimism and positivity becomes.

Being optimistic and embracing the positive is not a denial of negativity. Negativity, sadness and depression all have a part to play in our learning to cope with this disease. Repressing the depression and sadness is not the way to become positive.

You can't have a chronic degenerative disease and not have moments of sadness and depression. It's perfectly natural given what we're all going through.

Coping successfully does not mean you have to be upbeat and happy 100% of the time. Coping successfully means you don't linger or dwell on the negative stuff. You work at accepting what is unchangeable, and find a positive context for what you're going through and try to keep a positive outlook on life.
It helps to take your attention off yourself and your own problems and pains and focus on someone else. That will usually get anyone into a more positive frame of mind.



Spenser23









Re: The Worst Thing About AS
Spenser23 #174781 05/19/10 10:26 AM
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Spenser23..."It helps to take your attention off yourself and your own problems and pains and focus on someone else. That will usually get anyone into a more positive frame of mind."



That's how I ended up with 7 rescue animals (:

Re: The Worst Thing About AS
Spenser23 #174783 05/19/10 01:03 PM
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When I am down in the dumps I like to come here and vent knowing that I will finally be understood. And yes, I have had positive posts as well. But the fact is this board has kept me from going into a deep depression more than once. If you dont have anything nice to say dont say anything at all. I am a bit shocked at some of the reactions to be honest. AS does SUCK bad and somedays I wonder whats the point of living, it happens this disease can take over your whole being at times. I just received a letter stating due to my restrictions they are terminating me as of may 17, this after they said they would work something out because of ADA. I worked there 10 years and they completely turned on me and I gave them my all, it was such a huge part of who I was and I loved it and now thats gone too and to be honest it has hit me hard to the point I am numb, never in my wildest dreams did I foresee this as if enough hasnt been taken from me already so yes Dale I do understand and I am sorry u are feeling this way also; it does suck and you have every right to be angry, frustrated and depressed you have a right to your emotions and you have to go through the stages before you can truly move on and start thinking a bit differently and figuring out what u CAN do with the cards you have been dealt. Until then vent away I will listen smile


Mom of four beautiful children
DX Jan.2010



Re: The Worst Thing About AS
Banana #174787 05/19/10 02:15 PM
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Unfortuneatly, having AS comes with a wide range of baggage with pain as the largest. Anyone having AS knows how painful it is BUT, to me the largest pain is the emotional ones caused by AS-not being able to do what you USED to be able to do is a true kick in the groin. So is not being able to work or play with your grand-kids or visiting your son who lives on the opposite coast because the pain of a long flight holds you back. HOWEVER we cope and adjust and learn to make accommodations to our everyday life. This is the most vital thing we need to learn in order to live with AS.


Stuart Merenbloom-a 30 year sufferer of AS and still in pain most of the time:).
Re: The Worst Thing About AS
BigStu #174794 05/19/10 03:18 PM
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Dale
I feel for you. Been there, done that, got the Tshirt. Couldn't see any way out.
Don't give up hope. Things can change. We can learn to better work around issues, and live with a "different" life. And treatments can be very successful.

Re the discussions above: Everyone who posts here does so because they care. There can be no other reason when you think about it.

Love you all.

Glad we are here for each other.


Rach

"Knowledge is power" - Francis Bacon
"Try all things, and hold on to that which is good" - Thomas Jefferson
Re: The Worst Thing About AS
BigStu #174795 05/19/10 03:19 PM
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Wow, this has spawned into quite a discussion since I viewed it yesterday. I agree with Myre, Spenser, Stepmom and Bingo I like what you had to offer..........
AS is not a very nice condition and it robs it's suffers blind. Someone just starting out with it or finally getting a dx are going to have a lot of indifferent feelings, depression. One who has had it for a long period with poor pain control, poor control of the inflammation etc. is going to have a bleaker view of things as opposed to one who is having a better time of it due to their tnf's. Like it or not a poster is going to post in reference to how they are "feeling" that particular day and this should be ok. Like it already has said if this is something you don't want to read skip over it. But if you are feeling this way Please please post, vent, whine whatever it takes to get the feelings out! Just know someone here will listen. I don't think Dale's post was negative at all, I found humor in it if you go back and read my response. I try to find humor in things that bring me down, always have been a clown and I used his post in a funny sarcastic way in hopes to bring a giggle, a smile even a little grin to Dale or someone else who may be down face. Dale was feeling low and I tried to pull him up by being a regular old smart a**. I really do think difficulties in the bathroom during a flare are the worst! It's true, so what?

The board is here for education, support, bringing like people together. Alone we are weak together we are strong. Lets not sweat the small stuff. If you are feeling down post it, someone will help you up. If you are having a great day, yes, I want to hear that too for this gives me hope when I have little. One of the biggies I have learned here is that even when I start tnf's, whenever that may be, I should still expect to have pain. Well knowing this I probably won't bottom out. If I do someone will remind me of this fact. That's what here is for. We shouldn't have to fear what we are going to post unless it is directly going to offend or hurt someone. (then one would be fair game)

AS sucks big time, I'm having another sucky day but! It's a little better due to prednisone, today, I'm superwoman! Question is.......................


DALE? Are you still with us? How are you feeling and please don't let this thread scare you off.


Graves Disease/ dx 7/2006, Total thyroidectomy/1/2007 and suprise, papillary cancer of the sick bugger.
Spondy hell 1/2008 dx with undifferentiated to AS and as of 4/2012 RA thrown in. What?
MTX 0.8 injections weekly, HUMIRA every 10 days, began on 10/18/10, folic acid, prednisone as needed, vicodin or tramadol for pain. Pain......hurts!
Re: The Worst Thing About AS
DaleD #174797 05/19/10 03:23 PM
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Sorry to hear this Dale. The same thing happened to me at 47 so I applied for SSD and was approved in 6 weeks the first time I applied. In fact they waved the 5 month wait period even though I had been working then. I just posted a topic about being so stiff now. I have no range of motion anywhere and I'm fused front and back from C2 through C6. What's worked for me a little bit as far as the anger and depression goes is the generic form of Xanax, Alprazolam. I could get on here everyday and be negative so don't be so concerned about that. I feel like a prisoner in my body and right now we're in Atlantic City on a weeks vacation and I can't enjoy myself because I'm so stiff. The only thing I can tell you is just keep researching what you can to find answers that will help you keep moving forward.

Re: The Worst Thing About AS
charleston #174805 05/19/10 03:43 PM
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What sequoia, Spenser, Myre, et al. said. What is so bad about the occasional vent - isn't this supposed to be a safe place with friends who understand? Everybody has a time when they don't have anything extra to "give" to a friend who is struggling, but if you're at that point when someone posts a "downer" thread, just skip it & say nothing instead of being unsupportive.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: The Worst Thing About AS
#174839 05/19/10 10:44 PM
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Originally Posted By: KellyChristal
Anna, I hate posts like this too, because if we dont stay positive, and look at the good side of things then this disease will eat us alive. But, I also completely understand. The unrelenting pain and fatigue is so hard to live with, and even harder to explain to those who dont have it. But I will fight it till the day I die, and I want to live to be 100, even with the pain. Because I have two wonderful beautiful kids I get to watch grow up, and I have a wonderful devoted husband to grow old with. If I focus on the good things I have (instead of thinking I have 50 plus years of pain to look at) then things almost seem normal. good luck to you all, and try to look for the good in everything...and if you think the bad thoughts are taking over your mind, please reach out for help....
[u][/u]

I am sorry, but how am I NOT being supportive???? I said I hate posts like these because it only confirms others suffer the way I suffer and that hurts my heart. Not that I hate it when people vent, nor that I dont think people shouldnt vent. It simply makes me sad. That is it. I am in this right now...I hurt, I am flaring, I hate AS...I was only trying to help him see the good in life, to cheer him up. My goodness people everyone is so quick to jump on a side, when you dont even seem to read through the entire posts and try to understand what the person means. Sometimes I just want to just up...really there is no happy medium is there?

Re: The Worst Thing About AS
#174846 05/19/10 11:07 PM
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Why are you all arguing about being supportive or not? Dale is a new person to this board. This was just his 4th post. He need help, not bickering.

Dale, I am glad you found this board, Sorry you need us. Yes, it is hard to have AS. The pain and disability really gets us all down, at one time or another. Please read some of the threads on this board. Learn all you can. Please don't let all the bickering between some of the posters get to you. Most of us are facing the same things your are.
Donna


Donna
Suffering since a teenager.Dx with AS Dec 2009. Dx with ulcerative colitis 1998, both knees replaced 2006. GP said I had "some kind of inflammatory arthritis" 25 years ago. It has taken 50 years to get a Dx.

Mobic, Nexium, Naproxin, Lipitor, 6-MP, Nexium, Miacalcam, MSContin and 2 Norco for break through pain
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