I am very glad that I found this site. I have been praying that I could find a place where people understood what i am going through.
I have had Psoriatic Arthritis for almost two years now. This condition has taken an emotional and physical toll on me. My days and nights are filled with pain loneliness and buckets of tears. I can only walk with the assistance of a walker and even then only a few steps back and forth from the bedroom to the bathroom. It I so painful at times all I do is sit and cry.
I have not been able to leave my home in over a year. I spend each and every day in my bedroom with nothing much to do but watch tv and surf the web. I am married. But I although i know my husband loves me I just do not think he really understands how much physical and emotional distress that I am in.
I also feel as if I am nothing but a burden to him. Because he now has to do everything. I feel so guilty and ashamed and I feel so worthless. There are days that I just want to sleep all day because everyday is the same. I sit in my room and hear the sound of life going on. People doing the things I used to love and enjoy. It is so hard. but then there are the many times that I cannot sleep because of the aches and the pain and the anxiety.
I can no longer sleep in the bed the mattress is old and not comfortable, so I sleep in a chair which does not provide the best comfort but it is all that I have. I do not have any friends or family to talk to. It is just me my husband and our Dog Pippa.
My husband recently found out that he is a diabetic and he is snow having some complications. My husband has been laid off for quite some time now. It is a struggle getting by day to day.
We do not have any health insurance. Which makes matters even worse. I just feel so lost and all alone. I am so depressed and filled with anxiety all of the time. Many time when I walk up I just start crying because I have nothing to look forward to.
I need to talk to people who may understand what I am going through. I am so sorry for this long post. Thank you to all of you who have taken the time to read this post.
Oh Starzzbiz, I'm so sorry things are difficult for you. Welcome to our board, but I'm sorry that fate has enrolled you in the PsA club. We do understand here: go looking through the various threads and you will see that you are far from alone. We are all struggling with our mobility, the pain, the feeling of being less useful/fun than we used to be. Oh yes, we've been there ... we are there!
There are a lot of really good people on this board who will reach out to you.
Thank you so very kind words. I so very much appreciate you taking the time to reply.
I wish you the best,
Star Seenie said:
Oh Starzzbiz, I'm so sorry things are difficult for you. Welcome to our board, but I'm sorry that fate has enrolled you in the PsA club. We do understand here: go looking through the various threads and you will see that you are far from alone. We are all struggling with our mobility, the pain, the feeling of being less useful/fun than we used to be. Oh yes, we've been there ... we are there!
There are a lot of really good people on this board who will reach out to you.
You're not alone. This is a great site and there are so many of us here who understand exactly what you're going through.
Read through some of the recent discussions, I think there were some great ideas from others who have had difficulties with insurance, there might be something in there that can help you find the help you need.
On here, we all understand the feelings you're having, because we've all had them too. This place has been huge in helping me to find acceptance of the fact that I have this disease. I've seen that no matter how bad I think it is for me, I'm not alone. I know it's easy to think you're a burden, I've felt the same way. But I think my husband's frustration with this whole thing is not that I can't do things I used to do, but that he sometimes feels helpless because this is something he can't fix.
I would urge you to go talk to someone. Call a church, tell them your situation and tell them you're a shut-in. The pastor should be able to come to you or to send someone from the church to come visit with you. My aunt used to do this sort of thing, as a lay-minister. She would visit people in the hospital or those who couldn't leave home. In the meantime, know that there are tons of people on here who understand and really care about you. We're all in this together.
Thank you so much for your reply. feel some hope now that I have found this site. I still have a strong Faith, but there are days that I wonder why me? To be honest , I just do not want anyone to see me in this broken state. I was always the one with the "Baby Face" The "Athlete", The "Army Service Member. I Served one tour of Duty many years ago. My skin is so messed up now that I am embarrassed to be seen by anyone.
I pray that you will be comforted with better days.
Star
CJCB said:
You're not alone. This is a great site and there are so many of us here who understand exactly what you're going through.
Read through some of the recent discussions, I think there were some great ideas from others who have had difficulties with insurance, there might be something in there that can help you find the help you need.
On here, we all understand the feelings you're having, because we've all had them too. This place has been huge in helping me to find acceptance of the fact that I have this disease. I've seen that no matter how bad I think it is for me, I'm not alone. I know it's easy to think you're a burden, I've felt the same way. But I think my husband's frustration with this whole thing is not that I can't do things I used to do, but that he sometimes feels helpless because this is something he can't fix.
I would urge you to go talk to someone. Call a church, tell them your situation and tell them you're a shut-in. The pastor should be able to come to you or to send someone from the church to come visit with you. My aunt used to do this sort of thing, as a lay-minister. She would visit people in the hospital or those who couldn't leave home. In the meantime, know that there are tons of people on here who understand and really care about you. We're all in this together.
I'm sorry you are having such a hard time right now, but please know that you certainly are not alone. You are stating feelings that most of us have experienced. Dealing with a chronic illness is not easy and we all can relate to exactly how you are feeling. As I read through the posts, I'm amazed that others share my feelings and concerns when I feel like I am the only person in the world who has ever gone through these things. As you look over the board, I'm sure you will come to know many people here who understand and care.
Many of us check this board daily and others drop by when they have a specific concern or just need to vent. It's good for the soul! There is another good arthritis board at this site on about.com: http://forums.about.com/n/pfx/forum.aspx?nav=messages&webtag=ab...
This board is more specific to psoriatic arthritis; the other is a general arthritis board. Both have great people who offer both support and information.
Hang in there; we do understand how unfair life feels at times when dealing with chronic pain. But you have taken an important step by finding a great support group. Glad you found us!
Thank you for your warm welcome. I thank you so much for your encouraging words. I would also like to Thank you very much for the link.
Warm Wishes,
Star
Byrd Feeder said:
Hi Starz and welcome to the discussion board!
I'm sorry you are having such a hard time right now, but please know that you certainly are not alone. You are stating feelings that most of us have experienced. Dealing with a chronic illness is not easy and we all can relate to exactly how you are feeling. As I read through the posts, I'm amazed that others share my feelings and concerns when I feel like I am the only person in the world who has ever gone through these things. As you look over the board, I'm sure you will come to know many people here who understand and care.
Many of us check this board daily and others drop by when they have a specific concern or just need to vent. It's good for the soul! There is another good arthritis board at this site on about.com: http://forums.about.com/n/pfx/forum.aspx?nav=messages&webtag=ab...
This board is more specific to psoriatic arthritis; the other is a general arthritis board. Both have great people who offer both support and information.
Hang in there; we do understand how unfair life feels at times when dealing with chronic pain. But you have taken an important step by finding a great support group. Glad you found us!
Living with psoriatic arthritis can be incredibly difficult and isolating at times. One of the most difficult things to do for some of us is to reach out for help and invite people into our lives. This community is a good place to start. I second CJCB's suggestion to call your church (or any church) to ask if someone can visit. Sometimes just a half hour with someone can make a world of difference. If you explain your situation, you should be matched with someone who will see past your psoriasis and PsA. In my congregation, two of the "ministers of the assembly" who go visit people have autoimmune disorders and really do understand.
In a matter of months I went from walking unassisted to using two canes to sometimes using a wheelchair (some weeks more often than not). It took time, but I learned to accept my limitations and learn to balance my life in a way that I can get out and about when I need to. It helps me more to move (even though it's painful) than to be still, so even when I'm at home I make an effort to get my joints moving whenever possible.
I want to Thank you so much for your advice and words of encouragement. Although I know it may be good for me to talk to a minister. I just am not comfortable about anyone seeing me in this way. That is why I have reached out for help and support on this site. I need someone to talk to. I am not a very trusting person. Especially in ths day and time it is so hard to know who you can trust. Thank you so much for taking the time to read my post and reply to it. I hope that you have better days ahead.
Blessings,
Star
nym said:
Welcome, Star!
Living with psoriatic arthritis can be incredibly difficult and isolating at times. One of the most difficult things to do for some of us is to reach out for help and invite people into our lives. This community is a good place to start. I second CJCB's suggestion to call your church (or any church) to ask if someone can visit. Sometimes just a half hour with someone can make a world of difference. If you explain your situation, you should be matched with someone who will see past your psoriasis and PsA. In my congregation, two of the "ministers of the assembly" who go visit people have autoimmune disorders and really do understand.
In a matter of months I went from walking unassisted to using two canes to sometimes using a wheelchair (some weeks more often than not). It took time, but I learned to accept my limitations and learn to balance my life in a way that I can get out and about when I need to. It helps me more to move (even though it's painful) than to be still, so even when I'm at home I make an effort to get my joints moving whenever possible.
Hey Star, It is good that you are here. If I had know how helpful just knowing others had any idea what I was going through is I would have come here years ago. I’ve been thinking about your post for the better part of the day and I have to say “It’s not good”. I sit on the sofa and I watch my children playing and I know that this is not how things were suppose to be. It seems like all I can really do is sit here with my head on my hand watching these people live and I just can’t join them. I know your frustration, becoming a passive observer instead of an active participant in your own life and in the lives of those who depend on you, really is more bitter than death. I say this because although I am alive I am a ghost. The only real difference is my loved ones can’t morn for me, they can only be frustrated with me. As much as I want to carry the weight for my family I can’t even carry the weight of myself. Truthfully I am a burden. I’m reminded of something I once heard about Tibetans. I heard that there is a small group that take an oath of poverty and become beggars so that others may be blessed by giving to them. A part of me hopes that is along the same lines of what I’ve become for my family. Personally the entire thing has allowed me to see things in a clearer light (funny thing for a blind guy to say huh). Very basic human things like virtue, vanity, compassion, and selfishness are much more obvious now, both in the moment and the duration. I have seriously considered having myself declared a ward of the state and being turned over to a nursing home. I’m penniless and have several years of vagrancy behind so I’m pretty sure I could do it. I also know however that if I were left to my own despondency my joints would cement. The way they do at night after just a few hours of not being forced to move only a million times more. Fortunately for me everyone thinks I’m faking it and my fingers just twist like that naturally. I don’t know you but this is what you’ve made me think of when you said you don’t move at all. It’s very scary to me. I’m sure it’s not right for you or anyone else and I wouldn’t recommend it for anyone but I eat about 10kmg IB daily. I’ve been otc only for a long time and it comes with its own set of complications. I also know what pain so intense you think it might squeeze you out of your mind like water being wrung out of a rag is like. But you have to make yourself move, you just have to. You’ve been blessed with a walker use it, don’t just lay down, please. There is nothing wrong with slow, slow is really very fast when compared to stopped. Perhaps I’m way way out of line to tell you anything but I’m really glad you’re here and I hope to hear what you have to say on the threads.
Reading your post brought me to tears. Your words touched my soul. It can be so easy to forget sometimes that so many other people are suffering when you are in so much pain yourself. It breaks my heart that you have considered becoming a ward of the state. I sense that you must be in unbearable pain both physically and emotionally .I feel as you do. I feel like life is moving on without me. I am sorry that your family does not really understand how much pain that you are in. I think when people look at us we may appear to be fine to them. But what they do know and maybe cannot understand is the aches and chronic pain that we feel each and everyday a pain that I pray that my loved ones will never have to endure. There are days I just want to "SCREAM" Why Me! Why Me! I ask myself what did I do to deserve this fate. I pray that I will be blessed financially because if I had money I would be able to have better care and a more comfortable life. Sometimes I envision what my life would be if given the opportunity to have a better quality of life. You are Blessed because you have your children with you to love and to care for. I know it must be so hard for you to not be able to be more active with them but having you there with them must mean the world to them. You have to be strong for them. Just loving them and telling that you love them and being apart of there life will mean everything to them please do not forget that in your times of despair.
You see I did not have the love of a mother or a father. My mother did not want me so she just gave me away to my grandmother. I never knew who my father was. I grew up as a child for many years thinking that my grandparents were my birth parents. My Grandparents were so ashamed that their apparently unmarried daughter had a baby that they told people for many years that I was adopted. But that is a long story. I only mentioned it because, I know for me having a loving mother and father would have made such a difference in my life. As I am sure that your love and your presence does to your children an I pray that you will find strength and comfort in their love for you and your love for them.
I will take your advise to move around more each day no matter how much it may hurt. You have given me the encouragement to do so. I think that I had just started to just give up because my days are hours of nothing to look forward to, each day is the same. Sometimes I will stay up all night and sleep all day just keep from being so bored all of the time. Your words have given me the strength to stay strong. I hope that you will find the strenght to stay storng as well. I would like to thank you so very much.
Blessings and best wishes to you,
Star
RS said:
Hey Star, It is good that you are here. If I had know how helpful just knowing others had any idea what I was going through is I would have come here years ago. I’ve been thinking about your post for the better part of the day and I have to say “It’s not good”. I sit on the sofa and I watch my children playing and I know that this is not how things were suppose to be. It seems like all I can really do is sit here with my head on my hand watching these people live and I just can’t join them. I know your frustration, becoming a passive observer instead of an active participant in your own life and in the lives of those who depend on you, really is more bitter than death. I say this because although I am alive I am a ghost. The only real difference is my loved ones can’t morn for me, they can only be frustrated with me. As much as I want to carry the weight for my family I can’t even carry the weight of myself. Truthfully I am a burden. I’m reminded of something I once heard about Tibetans. I heard that there is a small group that take an oath of poverty and become beggars so that others may be blessed by giving to them. A part of me hopes that is along the same lines of what I’ve become for my family. Personally the entire thing has allowed me to see things in a clearer light (funny thing for a blind guy to say huh). Very basic human things like virtue, vanity, compassion, and selfishness are much more obvious now, both in the moment and the duration. I have seriously considered having myself declared a ward of the state and being turned over to a nursing home. I’m penniless and have several years of vagrancy behind so I’m pretty sure I could do it. I also know however that if I were left to my own despondency my joints would cement. The way they do at night after just a few hours of not being forced to move only a million times more. Fortunately for me everyone thinks I’m faking it and my fingers just twist like that naturally. I don’t know you but this is what you’ve made me think of when you said you don’t move at all. It’s very scary to me. I’m sure it’s not right for you or anyone else and I wouldn’t recommend it for anyone but I eat about 10kmg IB daily. I’ve been otc only for a long time and it comes with its own set of complications. I also know what pain so intense you think it might squeeze you out of your mind like water being wrung out of a rag is like. But you have to make yourself move, you just have to. You’ve been blessed with a walker use it, don’t just lay down, please. There is nothing wrong with slow, slow is really very fast when compared to stopped. Perhaps I’m way way out of line to tell you anything but I’m really glad you’re here and I hope to hear what you have to say on the threads.
Hi Star, welcome to the group. It is an awesome community to share what is on your mind, and try to cope with what you are going through. There are no dumb questions or comments. I am sorry you are so sad, but you have no reason to feel GUILT, you did nothing wrong. I will hold you up to God in my prayers. It can be a real struggle to get by each day, people here understand that. I still work full time and I would be a weathly woman if I had a dollar for every ache and pain that could keep me home from work each day. (I am now in pain while walking and I've been trying so hard to hide it. I haven't told anyone at work, I don't need any reasons to lose my job.) But, you need to know you are not alone, there are a lot of GOOD people out here that share your disease. I agree with the others who think you need to talk to your minister. They don't care WHAT you look like. He or She will share God's love with you no matter what the circumstances are. Please try to make that call. It will make you feel so much better to get it off your chest. And, maybe find some sort of clinic that will see you at very low or no cost. I will keep praying for you! Sending hugs, Lainee B.
Thank you so very much for taking the time to care. The advise and support has been very comforting to me in my many days that have just been filled with darkness. I am sorry to hear that you are experiencing so much pain. I have taken all the advise to heart about speaking to a minister. Maybe at some point I will do that, but I am just not ready to meet with a minister at my home yet. I know a minister well not be concerned with my appearance. I will not turn on the bathroom lights, I have plugged in a night light because i cannot bare to look at myself and when I do I just start crying. I feel so broken and old. I am not that old. But I feel that way.
I Thank you so very much for offering your prayers and advise. I so very much appreciate it. I pray that your pain eases and that you will feel better. May God Bless you.
Welcome to this site, It has truly helped me so much over the last 4 months, It has brought me out of deppressions and helped calm my fears when I felt like something wasnt quiet right...everyone on here is so wonderful and no matter what the question or concern someone is always willing to help, Glad you are here!
Thank you for welcoming me to this site. It is so encouraging to hear that you have found this site and the people in this community a source of comfort and encouragement. Depression has really taken hold of me lately. I could use all of the support and encouragement from people who share similar issues.
Thank you so much for your kind words.
Star
amueller said:
Welcome to this site, It has truly helped me so much over the last 4 months, It has brought me out of deppressions and helped calm my fears when I felt like something wasnt quiet right...everyone on here is so wonderful and no matter what the question or concern someone is always willing to help, Glad you are here!
I would like to echo the words given to you by all these wonderful people. I have been the beneficiary of the positive attitude and compassion of many of these people myself. As I have read through these posts between you and them, I feel great compassion for you. And what I am about to say to you is in no way intended to go against anything they have said, and I intend in no way to offend you. You have got to suck it up! At some point, when all the chips are down, the choice becomes very simple. Am I gonna give up or press on? You can not let yourself even think of giving up! When you just throw your hands up and say I quit, well, you can guarantee that the only things ahead are more of all the things that you hate about your situation now. You need to try to stop feeling so sorry about yourself and get mad! Get mad at the disease and how it is taking over your body and your mind. Get mad at your problems, mad enough to fight back! How dare this disease try to tell you what you can and can't do!?!
You got to understand that 80% of this game is mental. The pain you are experiencing can only hope to be treated and to a certain degree you have no control over how your body is going to feel. The one thing you do have the ability to control 99% of the time, if you want to, is your mind. One of my favorite authors, Dr. Wayne W. Dyer, gave me a war cry of sorts some years ago, "Change the way you look at things and the things you look at change." Another saying that I repeat to myself daily actually came from my wonderful girlfriend, "If you want something different than what you have, you have to do things different than you have done." It is so easy to get into that downward spiral when you have to face pain every day. But you need to take control of your mind and decide that you are no longer going to allow yourself or anyone else to pull you down that road. We can be our own worst enemy, One of the hardest things I have had to deal with in my fight is that what is often the best strategy in my fight feels contradictory to being in a fight. I mean, sometimes the best way to fight is to passively accept things. You have to accept that your body is what it is now. You have to love yourself as you are. The ego gets in our way and makes that almost impossible sometimes. The ego is telling you a story. A story about how things used to be and how things should be and it will use those stories to keep you on that down turned slide. The ego is seeking out ways to prove to you that what it is telling you is true. It says that you look horrible and when you look in that mirror it starts pointing out all those things that you hate about yourself. You got to flip that way of thinking. Look in that mirror and say, hey I can stand, a lot of people can't. Hey I can see, A lot of people can't. Hey I have a bathroom to stand in and look in this mirror, a lot of people are homeless. And, get more specific to your situation. This is what I mean about changing the way you look at things, cause whatever you choose to think about, the good or the bad, is what you will get back. OK I have gone on long enough. I would like to suggest some reading though. Wayne Dyer's The Power of Intention, Also, Eckhart Tolle's book A New Earth. These 2 books changed my life. Stay strong and stay in touch.
Welcome and I hope you find some encouragement in what we will always admit, in a quiet time, is a place that can seem without hope. You have been given some great advice by others here. My turn to give you a story - not about me
My father has a chronic disease. It is pretty hard to diagnose, so let’s call it “purple spot” (in hindsight obviously autoimmune, and most likely PsA). So dad’s purple spot was really hard for all of us; I am the youngest child and only have a couple (yes literally two) memories of a happy father from my youth (before 8). For many years after I got these little flashes of his humor and his love for life, but unfortunately they were always overshadowed by his shame and feeling of uselessness.
His feeling of uselessness was so extreme, that for many years, the phrase ‘you’re useless’ never left me. Obviously it was more about him (isn’t it always), but I was just a kid.
I’m a burden on my family - already. I still work full time and earn more than my husband, but before we did equivalent housework and caring for our two year old. Now I would be surprised if I do more than 1/4.
I am, however, very determined that even if we get to the stage where I’m earning nothing, and still unable to care for our daughter, that whilst I may feel useless, I have the choice to accept others help (especially those closest to me, like my husband), so that they don’t feel helpless to help me. I think it can be surprising how much your loved ones feel better if they think they can help, so why not?
Ron, that is PERFECT advice for all of us to live by. We can't control our circumstances, but we can control how we deal with the cards we were dealt.
I opened my morning devotion today and this is part of the prayer for today: Jesus, You never promised your followers deliverance from adversity. Rather, You promised Your deliverance THROUGH adversity. As I bear the cross You have appointed for me this day, strengthen my reliance on YOU to get me through. Strengthen my Faith through this challenge to know I can face greater responsibilities. May my patient endurance point others through me to the great sacrifice You have made for us all.
You can't tell me these messages just come in front of me by chance! Our Father cares for each of us, and we need to accept whatever happens to us. How we deal with it is the most important part of the journey. It begins by counting our blessings not our worries.
I was having a sad day myself, and I read all these posts and thought to myself YOU CAN DO THIS!! STAR CAN DO THIS TOO! WE ALL CAN DO THIS!!!
Ron said:
Star,
I would like to echo the words given to you by all these wonderful people. I have been the beneficiary of the positive attitude and compassion of many of these people myself. As I have read through these posts between you and them, I feel great compassion for you. And what I am about to say to you is in no way intended to go against anything they have said, and I intend in no way to offend you. You have got to suck it up! At some point, when all the chips are down, the choice becomes very simple. Am I gonna give up or press on? You can not let yourself even think of giving up! When you just throw your hands up and say I quit, well, you can guarantee that the only things ahead are more of all the things that you hate about your situation now. You need to try to stop feeling so sorry about yourself and get mad! Get mad at the disease and how it is taking over your body and your mind. Get mad at your problems, mad enough to fight back! How dare this disease try to tell you what you can and can't do!?!
You got to understand that 80% of this game is mental. The pain you are experiencing can only hope to be treated and to a certain degree you have no control over how your body is going to feel. The one thing you do have the ability to control 99% of the time, if you want to, is your mind. One of my favorite authors, Dr. Wayne W. Dyer, gave me a war cry of sorts some years ago, "Change the way you look at things and the things you look at change." Another saying that I repeat to myself daily actually came from my wonderful girlfriend, "If you want something different than what you have, you have to do things different than you have done." It is so easy to get into that downward spiral when you have to face pain every day. But you need to take control of your mind and decide that you are no longer going to allow yourself or anyone else to pull you down that road. We can be our own worst enemy, One of the hardest things I have had to deal with in my fight is that what is often the best strategy in my fight feels contradictory to being in a fight. I mean, sometimes the best way to fight is to passively accept things. You have to accept that your body is what it is now. You have to love yourself as you are. The ego gets in our way and makes that almost impossible sometimes. The ego is telling you a story. A story about how things used to be and how things should be and it will use those stories to keep you on that down turned slide. The ego is seeking out ways to prove to you that what it is telling you is true. It says that you look horrible and when you look in that mirror it starts pointing out all those things that you hate about yourself. You got to flip that way of thinking. Look in that mirror and say, hey I can stand, a lot of people can't. Hey I can see, A lot of people can't. Hey I have a bathroom to stand in and look in this mirror, a lot of people are homeless. And, get more specific to your situation. This is what I mean about changing the way you look at things, cause whatever you choose to think about, the good or the bad, is what you will get back. OK I have gone on long enough. I would like to suggest some reading though. Wayne Dyer's The Power of Intention, Also, Eckhart Tolle's book A New Earth. These 2 books changed my life. Stay strong and stay in touch.
