Spondylitis Association of America
Posted By: DaleD The Worst Thing About AS - 05/18/10 05:49 AM
I am one of those AS patients that has no periods of remission. I have continual inflammation and continual pain. It's gotten to the point that I have had to stop working. I worked at a sedentary job and I find that I can't even do that any more. My range of motion is severely compromised. I've found that the worst thing about AS is that it's not fatal. It should be. Any disease that robs one of their body and ultimately their mind should be fatal.

I'm sorry that I'm being so negative. It's just been a bad day. Some days the depression just gets the better of me. I mourn for what I was and I'm not sure I can live with what I've become.
Posted By: mrye4709 Re: The Worst Thing About AS - 05/18/10 09:00 AM
I understand, the only true good days I have had is after I started the Enbrel and had a medrol pack. Trying to get more pred from the dr and it is like trying to get pain meds from the pain specialist. Sometimes I think they just want to keep me feeling this way so I keep going back and paying the copay and they get money for an office visit. I'm not as stiff, but the pain and fatigue is still here.....
Talk to your dr, they really like handing out the anti d's.....
They do help some, but how can they truly expect us not to be depressed when you hurt 24 hrs a day.
Posted By: jrp Re: The Worst Thing About AS - 05/18/10 01:08 PM
Dale, I really know how you feel. Losing my passions, losing my ability - things I have excelled at in my life, all those things that I used to define myself, just went out the door like yesterday's news. That's been harder to deal with than any physical pain I've had to endure so far in the 30+ years I've dealt with AS. It's pain of the soul and it takes healing in your heart to ease it. If you're like me, you have been mouring over each personal loss like a beloved family member - feeling sad, angry, frustrated and depressed.

I still struggle with these feelings, but I did get some grief counseling, and that has helped me to somewhat let go of those feelings that arise due to something I have no control over. It's not easy but maybe that route could help for you too. It can get better, you just have to switch it over in your own head. Good luck to you, but remember, you're not alone! ...Jen
Posted By: Banana Re: The Worst Thing About AS - 05/18/10 01:15 PM
Personally, I hate these posts. It doesn't seem productive to focus on the bad. This monster already lives in my body, I am not going to let it live in my mind.

Saying that, sorry, somedays it really sucks.

Hope you are exercising, DAILY. I have not lost much ROM except bending over and in my knuckles. The PT commented on how strong I am and mentioned how important it is to keep that up.

Perhaps you need to see a PT, exercise helps sadness too and it is the only thing we can do to combat this monster--that will have a real effect on the disease.

Sorry, Anna
Posted By: lilbluesmurf Re: The Worst Thing About AS - 05/18/10 07:57 PM
I'll tell you what bugs me the most about AS....not being able to wipe my backend on a bad day! Someone had to say it!
Posted By: mrye4709 Re: The Worst Thing About AS - 05/18/10 08:12 PM
Hey lilblue, I can actually do that since I started the Enbrel. I'm telling you, I always thought the pain was the worst part, but now I can honestly say the stiffness was the worst. I still have pain, but I can wipe, lol....
Posted By: lilbluesmurf Re: The Worst Thing About AS - 05/18/10 09:25 PM
ya hoo!!!! You go girl!!!
Posted By: Anonymous Re: The Worst Thing About AS - 05/19/10 12:19 AM
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....
Posted By: mrye4709 Re: The Worst Thing About AS - 05/19/10 01:06 AM
They are reaching out for help, here. I can tell you from experience, it is easier to be positive when you aren't fighting the excruciating pain. Maybe the negative posts aren't the greatest for newbies to read, but when they are hurting so bad they come here for understanding and support. I almost left because I felt like if I didn't have anything positive to say I shouldn't be here. It is for support, not just postitive. Not trying to start anything, just don't want people to feel like they don't belong. Where else are they to go if not here, even if they aren't always positive.
Posted By: Banana Re: The Worst Thing About AS - 05/19/10 01:17 AM
Well, whining about your individual pain in one thing, and helpful to get support but dwelling on what is the worst of AS? Really, I can look at what I can't do or I can look at what I can do. Which is more helpful to me?

I totally understand, just pointing out the different ways we can look at what we are going to be stuck with the rest of our lives. Which, like Kelly I hope is a long time, even if I can't ice skate anymore.

Yes, living with constant pain sucks. SUCKS. I can tell you from experience that focusing on the pain and bad doesn't help. Sure we all do it, and can't fight the monster constantly, but we also don't need to dwell in hell every minute of my life either.

a
Posted By: Anonymous Re: The Worst Thing About AS - 05/19/10 01:29 AM
Mrye, I was not saying I hate these posts because people shouldnt be negative, I hate them because I know the feeling. I hate them because it is our lives...the pain, the sadness, the feeling of no hope. Yes, this is the place to vent. I live with the 24/7 chronic pain that makes me want to give up. I live with the fatigue that literally makes me never want to get out of bed. I live with the depression of knowing my life will forever be this bad, if not worse. But I also have good things in my life, and my post above was trying to point out that only we can make ourselves better. I have to tell myself life is worth living, because no one else can do that for me. I was not trying to sound like I wasnt being supportive, of course I love everyone here, and I want everyone to feel welcome and to write whatever they want. I do agree with Anna though that it is better to get the sad and negative posts out and get on with it, because when the board gets full of negativity it seems to spread like a wildfire and then it only makes us all feel so much worse. I just am so overwhelmed in life right now, so stressed out, and it only makes it worse to come here and to know that my spondy family is hurting just as much. I just wish we could all just be happy and be healthy, and I want everyone to know that we can beat the sadness and madness...we can!
Posted By: mrye4709 Re: The Worst Thing About AS - 05/19/10 01:32 AM
I wasn't saying it was great to do it, but don't want to see anyone feel unwelcome. This person needs to get help with his/her feelings, but when one comes here for that help and gets this kind of response it can't be good. When someone is already so down they need help back up, not to be shunned or shamed for their feelings. I don't think i'm the only one who has been that low, i'm not at this point because I am on better treatments. Just saying it is easy to get into this mode when treatments are not working. I didn't mean that we should focus on what we can't do, of course positive is better. It's just not always possible.....
Posted By: Anonymous Re: The Worst Thing About AS - 05/19/10 01:34 AM
i believe this forum is for folks at all levels of their AS suffering. do we know enough about their life to tell them how they should feel? this forum is open to all, not just those with a specific point of view. we are welcoming to all. folks whose AS is under control or who aren't suffering likely don't come here, as someone else said the other day, they are out living their lives. please remember our compassion. we are not required to read or provide our opinion on a topic. i frankly just skip ones which i do not understand, or have no opinion on.

prayers and peace to all on their journey. s.
Posted By: mrye4709 Re: The Worst Thing About AS - 05/19/10 01:39 AM
Kelly, when a member comes on and everyone is positive and if there were no posts like this one, then I think that person would feel even worse. I would feel like I was the only one who ever felt that way and would not come back. I would withdraw more. Just like everything else in life, you have to take the bad with the good. It doesn't feel good to think you are making things worse on anyone who reads it or bringing everyone else down. I'll shut up.....
Posted By: Anonymous Re: The Worst Thing About AS - 05/19/10 01:47 AM
Mrye how am I making it worse? All I said was that if we focus on the bad then it brings us down even more, it makes the fight harder. What exactly did I say that is making you mad? I am not trying to push this OP away, quite the opposite. I am trying to say that I hate this disease and how it depresses us, and how it makes us want to give up, and I am trying to encourage everyone to fight the negative beast tht lives in us and make a point to push past it and to focus on the good in our lives. I am glad AS isnt fatal. Like I said above, I too live in constant pain, but I will take that pain in exchange for a long life to watch my kids grow up...to be with those I love. Sometimes all it takes is a change in the way we think, all it takes is one little glimmer of hope to change your entire outlook. I am not trying to fight, or hurt anyone, I just want all those here to know that even though you have AS, there are good things to be celebrated. Focusing too much time and energy on sadness will only make you hurt more.
Posted By: mrye4709 Re: The Worst Thing About AS - 05/19/10 02:07 AM
I'm not mad and not trying to start anything. Maybe I didn't phrase that right. If a person is already down and they come here to put their feelings on then reads that they are making it "harder" on someone else they may feel worse. I didn't say you made it worse on anyone.

It was a response to this....

I do agree with Anna though that it is better to get the sad and negative posts out and get on with it, because when the board gets full of negativity it seems to spread like a wildfire and then it only makes us all feel so much worse. I just am so overwhelmed in life right now, so stressed out, and it only makes it worse to come here and to know that my spondy family is hurting just as much.
Posted By: Anonymous Re: The Worst Thing About AS - 05/19/10 02:26 AM
Mrye, it does make me feel worse knowing you all hurt like I hurt. The pain we feel from AS is so horrific, and I hate that anyone has to feel it, let alone people I have grown to care for. I am going through some very stressful things in my personal life right now, my sisters husband has been having an affair with my sisters married best friend, who also is her boss...her husband is leaving her to marry the best friend, he did work for my fathers company, but not anymore...he has ruined her life, and has made a major negative impact on the entire family. We are all hurting so bad right now...they have been together for 12 years, and this was completely out of the blue. As most of the members here know I have lived through the loss of my mother to cancer, the loss of my mother in law to suicide, and I have severe aggressive AS and now crohns. It hurts me to read that people dont want to live, that they cant find anything to live in pain for. because I know there are reasons to live, reasons to be happy, even with the pain and fatigue. My mother died fighting for life, and my mother in law died because she didnt want to live....and I am here to tell everyone that you were given this life to live to the fullest and only you can choose to make it happy or sad. I am not saying you have to be happy all the time, believe me I am not, nor ever could be, but I am thankful for the little things....and I refuse to hate the world and my life because I have AS and live in pain. ALl I ask is that each and everyone of you try to be happy, thankful, for one little thing each day. Just one thing. It could be that you got a full hour of sleep. Or you had a nice phone call from a friend, or that you got to see a movie that made you laugh. Then at the end of the week, add up all those small things, and you will realize that there are many things/reasons to live in pain. Love to you all....
Posted By: joey Re: The Worst Thing About AS - 05/19/10 02:45 AM
Sometimes it helps to just say AS SUCKS!!!! and know that we are understood by everyone here.

It helps to get it out. Kind of like dropping a big load off our shoulders and we are renewed, reenergized to keep looking at the positive.

That's how I took the post. It's not always easy to look at the positives in our lives.........at least not ALL the time. It just feels good to not feel so strong, even for a little while. We are only human.

OK, that's my two cents.

Joyce
Posted By: mrye4709 Re: The Worst Thing About AS - 05/19/10 02:48 AM
My original response was to another post, then you posted. I know you have been through alot. Not attacking at all, just want others to feel that if they need to get the negative feelings out it is ok to do it. As Sequoia said, if we don't like a post and don't want to respond it is for each one of us to decide. Everyone has the right, not just the ones who have something positive to say. You have been there also, as have many others. Maybe not to the point of not wanting to live, but each of us have our unique pain and our unique way of dealing with it. It just wasn't this original posters day to see the glass half full. No problem with anyone, just defending the right to whine I guess.
Posted By: mpc2012 Re: The Worst Thing About AS - 05/19/10 03:18 AM
spam if you want. I dont see any problems with negative posts as I understand what people go through with this.
Posted By: Spenser23 Re: The Worst Thing About AS - 05/19/10 03:43 AM

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







Posted By: Bingo Re: The Worst Thing About AS - 05/19/10 10:26 AM
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 (:
Posted By: Stephmom4 Re: The Worst Thing About AS - 05/19/10 01:03 PM
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
Posted By: BigStu Re: The Worst Thing About AS - 05/19/10 02:15 PM
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.
Posted By: Rach Re: The Worst Thing About AS - 05/19/10 03:18 PM
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.
Posted By: lilbluesmurf Re: The Worst Thing About AS - 05/19/10 03:19 PM
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.
Posted By: charleston Re: The Worst Thing About AS - 05/19/10 03:23 PM
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.
Posted By: JenInCincy Re: The Worst Thing About AS - 05/19/10 03:43 PM
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.
Posted By: Anonymous Re: The Worst Thing About AS - 05/19/10 10:44 PM
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?
Posted By: avonldy Re: The Worst Thing About AS - 05/19/10 11:07 PM
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
Posted By: mrye4709 Re: The Worst Thing About AS - 05/19/10 11:09 PM
I wasn't trying to bicker, I did send a PM to the original poster. Haven't heard back yet.
Posted By: Anonymous Re: The Worst Thing About AS - 05/20/10 01:32 AM
Sorry Donna, not trying to argue just trying to not be beat down by people who think I am this big bad monster. I am sick of my opinion being the wrong one. Guess what, I have a voice, and it is just as important as the next. And for the record I didnt start any bickering, I only try to defend myself when I feel like I am being picked on. Like I said previously I care when someone wants to die because of the AS....it hits home. I want that person, in this case Dale, to know that yes we got handed one nasty hand of cards....AS is hell to live with, but if we try, make a major effort to, we can find reasons to keep going. I think everyone with AS goes through depression, knowing we will always be in pain. It isnt an easy pill to swallow. But please dont beat me down with a stick just because I am trying to get someone to see that life can be good, that we can get passed the sadness and the pain to live a productive and fulfilling life.
Posted By: MSR70 Re: The Worst Thing About AS - 05/20/10 03:03 AM
Sounds like a truly rough day! Hope tomorrow is better! No prophetic words of advise or wisedom, just know there are other people out here who understand what you're going throuh! You are not alone...
Posted By: jasmom_99 Re: The Worst Thing About AS - 05/20/10 10:46 PM
My father did have continual AS and it did kill him at age 44. He had severe curvurture which compromised his lung expansion. Had an asthma attack ....couldn't breathe and then a fatal heart attack. This was many many years ago...long before the treatments and knowledge of today. I feel for those who never get relief but I do believe that new and better biologics are going to be available soon....keep the faith.
Posted By: DaleD Re: The Worst Thing About AS - 05/21/10 08:56 PM
There have been many different "takes" on my original post. I'd like to comment in general on what I've seen. I haven't been online for a while, haven't felt like it. I want everybody to know that I appreciate everyone's comments. It's nice to find both people who sympathize as well as people who offer a "kick in the butt", as I'm sure all of you know, both are important. It's far easier to take a well-meant "stop whining about what you've lost and dwell on what you have" from someone who knows what it's like. This is the only place I can get those well needed kicks from someone who deals with the same thing. (I was told once by a well-meaning coworker that if I just improved my diet, both the pain and the disfigurement would be gone. I wonder if she has told the researchers this.)
I just wanted everyone to know that there isn't really a wrong way to respond to what I originally wrote. Since people here know what I'm faced with, both the sympathetic ear and the kick in the butt are needed. Thank you all for your comments.
Posted By: Anonymous Re: The Worst Thing About AS - 05/22/10 02:57 AM
Dale, your response was really uplifting and inspiring. I am glad you are in a better place today...and I hope it lasts a long while. That was an amazing reply to everything above. Well done.
Posted By: Banana Re: The Worst Thing About AS - 05/22/10 03:47 AM
Dale. you are so right. Last week I did some volunteer work for an art gallery. It is accounting, I use to get paid a LOT to do it but I can't do it for very many hours so I ask her to cover the taxis (NYC). The location by bus/subway would have taken an hour. Free work and I only asked for taxis fare!!!

I walked in and she said "well, you seem to be walking fine to me" "what is it? Arthritis?

anna
Posted By: TexasGirl Re: The Worst Thing About AS - 05/23/10 09:35 PM
Thanks for your original post Dale. The second I read it, I forwarded it to my mom. I am like you-I wish I had "flares". I have the exact same thoughts and am glad that I'm not the only one. I was surprised to see all of the posts about not liking the negativity. I'm glad you didn't take offense to it. I did. AS is a nasty, painful, and humiliating disease.

With my first illness, I told myself that I was glad that I had it because I knew that my life's work would be helping people, especially people with illnesses. It made me a stronger person and I was proud that I had gotten through it. Then AS came when I was 18. There is absolutely nothing worse in life than pain. It has changed me-that's inevitable. Now I don't care that I am a strong person. I don't want to have to be one.

I am very positive, hopeful, and grateful for what I have. I do have negative thoughts at times like most with AS. I just want people to realize that not everything has to be positive. That is not the real world. If you don't like a post, don't reply then. Who are you to criticize someone's thoughts and fears?
Posted By: KurtAS Re: The Worst Thing About AS - 05/24/10 01:28 AM
Dale,
I've been here mostly as ghost reader for several years, but had to comment on your post. Its EXACTLY how I feel most days lately. I could have written the exact same post.

After 20yrs. I too can no longer work, am on company STD and going to LTD and just applied for SSDI. Since I'm 45, I hired attorney to help me thru it. If I don't get ok'd for SSDI, not sure what I'll do for my family & especially benefits. This worry is eating me up, but it is what it is.

I know how it feels. KurtAS
Posted By: Anonymous Re: The Worst Thing About AS - 05/24/10 02:59 AM
Feeling anxious, in pain from head to toe, no one understands or cares to in real life. Scared about living in pain the rest of my life...scared I cant be me on a daily basis because of this disease. Afraid I will not be the mom I want to be, or the wife I want to be. Nervous that outsiders (and even family) will think I am a druggie and a hypochondriac, because they cannot see my pain, nor feel it. Terrified I will lose insurance, my doctors, my lifelines for the only meds that help atm, which are narcotics. Even more afraid the narcotics will stop working at some point, or that my disease will progress to the point of nothing helping the pain. I have fears...we all have fears, and having AS only makes those fears bigger....how will I get out of bed in the morning and get my daughter off to school on time, how will I be able to be intimate with my husband without him knowing it hurts me, how will I pay my bills when I cant work because of the pain and fatigue. I am human, and I am scared too. I am sad, scared, lonely, mad, anxious, BUT I am also hopeful. HOPE. Life is scary period, add in a disease that causes chronic pain and life becomes unrecognizable. I did not write any words above to upset anyone, or to start a fight. What I wrote above was to simply remind everyone that we all have hope. Yes our lives are hard...in so many ways. I cant remember the last time I didnt hurt. But I am alive, and it reminds me of that saying it is better to have loved and lost then to have never loved at all....i kind of feel like it is better to have lived and be in pain then to not be alive at all....i just want to remind everyone that there is hope, all around. it may take some digging to find it, and if you dont want to see it you wont, but when you are ready, hope will be there for every single one of us. Hope that tomorrow will be better, that it will bring a cure or a better treatment, hope that life will not just be ok, but be GOOD. It isnt a matter of not commenting to a post if we have nothing good to say, for me it is saying what I think needs to be said so that maybe just maybe someone will look for hope instead of dwelling on the hurt. I never wanted to add to the hurt, just want you all to know that there is more out there for us....
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