Help I am so Lost and alone I have Psoriatic Arthritis

General
21

Ron,

Thank you very much for given me some tough love. I have been going through a very rough patch. It has been taking an emotional and physical toll on me. Your words and wisdom are exactly what I need to hear. I have never been a person who gives up easy. I am going to try my best to become stronger. Because I do not want to live my life like this. I do have many things to be grateful for. Thank you very much for the referrals to the books. Thank you very much for telling me what I needed to hear.

Many Blessings,
Star
Lainee B. said:

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.

Much love to you and yours,

Ron

22

Hello again, Star

Reading the messages others have sent to you has done my soul good too. Ron's, especially, was very thought-provoking. Please don't ever get the impression that the rest of us here "have it together", and that we've learned to accept this crummy hand we've been dealt. Trust me, it's an emotional battle for most of us: we may come across as very kind and very wise, but all of us are in turmoil as well.

I want to thank you for sharing your anguish. Reading the responses you got did me good as well. And posting a reply is therapeutic too. In responding to others, we are reminding ourselves of what is important, and we are giving ourselves advice at the same time.

I know coming here and posting was hard for you to do, and I hope you can muster up a bit more courage to turn on your light, pick up the phone, and ask for help. I know you are intensely self-conscious right now. But here's an idea to ponder: somewhere near you, there must be beauty schools and academies needing subjects to practice on. I wonder if you called them and told them about the miserable state you're in, whether someone might even be willing to make a house call. I know cancer patients can tap into these services (in Canada, the Cancer Society has a program called "Look Good, Feel Better"). You found us, maybe you could find something like that help you get over this hurdle. That might be a first step for you, and it might make it a bit easier for you to get out for social contact.

Stay in touch, and do tell us what you've done to help yourself, even if it is just one small step. A journey of a thousand miles starts with exactly that.

All the best with that step forward

Seenie

23

Hi Guys, I'm teaching a class that requires me to teach "The Thomas Theorem," which states simply, "If we believe things to be real, they are real in their consequences." The example I give my kids is this: If I am afraid to fly in an airplane because I fear that the plane will fall from the sky, that's my belief. The consequence is that I will miss out on lots of convenient and statistically safe travel because of my belief...not because of what may or may not happen. If I don't fly, I most likely will choose to travel by car, which research and statistics both show is much more dangerous than flying. The other possible consequence is that I stay home and go nowhere. Our beliefs color so much of our lives; it's very important to choose our beliefs carefully.

I try to keep my beliefs about myself very positive. Obviously I'm not always successful; what honest person could be? But I TRY to do it. Every day. It hurts to move, but I'm still moving. Some days it's just to the bathroom, but it counts. Some days it's across a parking lot. YAY ME! Of course other people don't get it. But I do, and in this particular conversation with myself, my opinion is the one that matters.

My brother, who is a practicing counseling psychologist told me once, "You can't sit around waiting to feel better. You have to DO something to feel better." Look at a magazine and plan a garden you'd like to have one day. Write a letter. Keep a diary for that book you will write one day about PsA. Watch a self-help program. Read Wayne Dyer--Don't you just love Wayne Dyer? And Seenie is right about doing something for YOU. We get our nails done and you would not believe what a simple thing can do for the soul. I don't have to look at those awful psoriatic nails anymore. It cheers me up--the first step to changing an attitude and a belief. I was nervous about going to the manicurist and letting her look at my nails. She wasn't shocked; she'd done psoriatic nails before. It was nothing new for her, and, in fact, she had the experience to know how to cover my problem areas. If I had held onto my fear, I would have missed out out on what has become a great treat to myself!

When my SIL, who also is a psychologist, said,, "Your world just keeps getting smaller and smaller," it left a hole in my gut. So I began to think what I could do within reason to fill up that hole. It was amazing the things I came up with that helped me.

I know it sounds simplistic and trite. It also works! For me anyway. We believe the messages we send ourselves...and remember, WI Thomas said if we believe things to be real, they are real in their consequences! Be cautious with what you tell yourself!

I know you are in pain, both emotionally and physically. Sometimes I think it's harder to fight the emotional stuff--especially that feeling of being isolated and alone. You left that behind when you signed into this discussion board. You are connecting to others, by your own initiative. You are taking care of your emotional life, and that makes you a smart cookie in my book!!

Hang in there; we're all in this boat, but we're most surely not alone.

24

AWESOME BYRD! Thank you for a thought provoking and uplifting message. You are what you make yourself. And I couldn't have said it better! There is NOTHING "trite" about your message, it is so real and honest and the truth. We need to remind ourselves of this. God doesn't make junk, and we are all beautiful to Him. It is the soul that holds our value not this miserable shell we are stuck in. Don't ever forget it.

I've been down lately and this was a perfect message to read. Thank you - what a beautiful way to start my day!

Lainee B.

25

Byrd Feeder,

Thank you very much for your thought provoking words. Finding this community has really helped me. I am trying to take things one day at a time. It has been so heart warming to know that there a people who really care about other people. I have been so alone in this struggle. Unfortunately I am not mobile enough to leave my home. and what make matters worse we live on the second floor of an apartment building with very steep concrete stairs. Although I walk with a walker. to go anywhere I would need a wheelchair.

Thank you so much

Star

Byrd Feeder said:

Hi Guys, I'm teaching a class that requires me to teach "The Thomas Theorem," which states simply, "If we believe things to be real, they are real in their consequences." The example I give my kids is this: If I am afraid to fly in an airplane because I fear that the plane will fall from the sky, that's my belief. The consequence is that I will miss out on lots of convenient and statistically safe travel because of my belief...not because of what may or may not happen. If I don't fly, I most likely will choose to travel by car, which research and statistics both show is much more dangerous than flying. The other possible consequence is that I stay home and go nowhere. Our beliefs color so much of our lives; it's very important to choose our beliefs carefully.

I try to keep my beliefs about myself very positive. Obviously I'm not always successful; what honest person could be? But I TRY to do it. Every day. It hurts to move, but I'm still moving. Some days it's just to the bathroom, but it counts. Some days it's across a parking lot. YAY ME! Of course other people don't get it. But I do, and in this particular conversation with myself, my opinion is the one that matters.

My brother, who is a practicing counseling psychologist told me once, "You can't sit around waiting to feel better. You have to DO something to feel better." Look at a magazine and plan a garden you'd like to have one day. Write a letter. Keep a diary for that book you will write one day about PsA. Watch a self-help program. Read Wayne Dyer--Don't you just love Wayne Dyer? And Seenie is right about doing something for YOU. We get our nails done and you would not believe what a simple thing can do for the soul. I don't have to look at those awful psoriatic nails anymore. It cheers me up--the first step to changing an attitude and a belief. I was nervous about going to the manicurist and letting her look at my nails. She wasn't shocked; she'd done psoriatic nails before. It was nothing new for her, and, in fact, she had the experience to know how to cover my problem areas. If I had held onto my fear, I would have missed out out on what has become a great treat to myself!

When my SIL, who also is a psychologist, said,, "Your world just keeps getting smaller and smaller," it left a hole in my gut. So I began to think what I could do within reason to fill up that hole. It was amazing the things I came up with that helped me.

I know it sounds simplistic and trite. It also works! For me anyway. We believe the messages we send ourselves...and remember, WI Thomas said if we believe things to be real, they are real in their consequences! Be cautious with what you tell yourself!

I know you are in pain, both emotionally and physically. Sometimes I think it's harder to fight the emotional stuff--especially that feeling of being isolated and alone. You left that behind when you signed into this discussion board. You are connecting to others, by your own initiative. You are taking care of your emotional life, and that makes you a smart cookie in my book!!

Hang in there; we're all in this boat, but we're most surely not alone.

26

Hello, Star

How are things with you now? We're wondering how you are. Have you managed to do anything that has made you feel even the tiniest bit better?

Seenie

27

Hello Seenie,

Thank you so much for caring about me. I have been doing a little bit better. I have been using the heating pad a lot as well as ice packs which seems to help some what. I have been very depressed lately and I know that that does not help my condition at all. I am also working on changing my diet. I am eating a lot of cherries, and fruits and veggies. I am taking fish oil pills and drinking al lot of herbal teas. I am praying that some of these things will also help ease the pain. I just have to take things one day at a time.

Thank you so much for thinking of me. I hope that you are doing well. It means a lot to me that there are people who care.

Blessings,

Star



Seenie said:

Hello, Star

How are things with you now? We're wondering how you are. Have you managed to do anything that has made you feel even the tiniest bit better?

Seenie

28

Thanks for checking in, Star! It's wonderful that you're making positive changes! Praying they help and you're feeling better soon. Depression makes physical symptoms so much worse - and reaching out to others can be the first step in the right direction.

29

U are not alone in the cyber world. i dont have medical either because i own a small buss. and cannot afford self pay. can you apply for a medical card? no shame in that. do you take pain meds or meds for psoriasis? methotrexate is cheap but can hav some funky side effects. there is a bit of hope out there we just gotta keep searching one day at a time.

30

U are not alone in the cyber world. i dont have medical either because i own a small buss. and cannot afford self pay. can you apply for a medical card? no shame in that. do you take pain meds or meds for psoriasis? methotrexate is cheap but can hav some funky side effects. there is a bit of hope out there we just gotta keep searching one day at a time.

31

Thank you Star for starting this thread. Was exactly what I needed to
read today! I am so blessed to have found you all.
I needed to ‘hear’ this today.

lynzbee said:

U are not alone in the cyber world. i dont have medical either because i own a small buss. and cannot afford self pay. can you apply for a medical card? no shame in that. do you take pain meds or meds for psoriasis? methotrexate is cheap but can hav some funky side effects. there is a bit of hope out there we just gotta keep searching one day at a time.

32

Hello Kirsten,

Thank you! The one thing that I know that is helping me more than anything are the wonderful caring, understanding and supportive people in this community. I know for sure that becoming a member of this community and the support and advise is making such a difference in my life right now. I know now that I am not alone in this struggle. I also feel so blessed to finally find a place where people understand and care about each other. I am glad that you have also found this wonderful community. The people here are really very caring and supportive people.

Blessings,

Star

Kirsten said:

Thank you Star for starting this thread. Was exactly what I needed to
read today! I am so blessed to have found you all.
I needed to 'hear' this today.

lynzbee said:
U are not alone in the cyber world. i dont have medical either because i own a small buss. and cannot afford self pay. can you apply for a medical card? no shame in that. do you take pain meds or meds for psoriasis? methotrexate is cheap but can hav some funky side effects. there is a bit of hope out there we just gotta keep searching one day at a time.
33

Hi nym,

The support and advise and the open hearts of the caring people in this community has also helped me to start to regain some strength in this battle with PsA. Thank you so very much for thinking of me an caring about me. I pray that you are doing well.

Blessing and hugs,

Star

nym said:

Thanks for checking in, Star! It's wonderful that you're making positive changes! Praying they help and you're feeling better soon. Depression makes physical symptoms so much worse - and reaching out to others can be the first step in the right direction.

34

Hi lynzbee,

Thank you so much for reminding me that I am not alone. For far to long I was so alone. I am not a person that normally reaches out on forums or chat rooms at all. I found myself in such a dark and lonely place in this struggle with PsA that I knew that I needed to find a place where I could talk to people who understands this condition and the struggles and the pain both physically and emotionally that we deal with. Unfortunately right now I am basically just taking over the counter medications. I am applying for SSI Disability which is a very long process. In the meantime I am just taking over the counter meds and ointments for my skin. I have taken Celebrex but my Rx Ran out and I have not been able to refill it. I really do not think that it really help that much at all.

Thank you so much for thinking and caring about me. I so very much appreciate it. I pray that all is well with you.

Blessings and Hugs,

Star



lynzbee said:

U are not alone in the cyber world. i dont have medical either because i own a small buss. and cannot afford self pay. can you apply for a medical card? no shame in that. do you take pain meds or meds for psoriasis? methotrexate is cheap but can hav some funky side effects. there is a bit of hope out there we just gotta keep searching one day at a time.
35

I just wanted to chime in and say please NEVER stop fighting to feel better. You owe it to YOURSELF. Your family can't do it, your friends can't do it, only you can decide to keep fighting. You are worth it. You are not junk, and you need to realize that so many of us have felt the same way. That's why there are so many great folks out here, because we've all walked in your shoes and decided we needed to talk to others who have "been there, done that" and may be able to share their experiences to help your life/situation. This site has given us our voices back, and we want you to start fighting back too! (Kind of a tough love thing!) I will keep praying for you and all the folks out there who are losing their drive to fight back. By the way, I went out to the psorasis.org website last night and there are all kinds of programs out there to help you with medications. They even have grants to help you with doctors in the USA. Best wishes to you! Check this link out:

http://www.psoriasis.org/page.aspx?pid=1307

36

Hello Starzzbiz,

I feel your pain, I really do. I can understand completely what you are going through, although our circumstances are not completely similar, I can understand what you are going through. I find much love and enjoyment everyday from my two dogs Roxy and Rainey, and to be honest, I don't think I could get through everyday without the true, unconditional love that a pet gives to you. Unless you have a pet, I don't think people really understand how dogs really just have a goal in life to please you and to make you feel better...they share your pain, and do all they can to make you feel better. I am glad that you have a loving dog to help you through this nastiness called PsA.

I am so sorry to hear that your husband is not well either, that has got to be another stress for you. I too feel like such a burdon on my husband as I am very limited as to what I can do. Although I only recently diagnosed (January), I have been having problems with this disease since 2008, but previous to that had 3 back surgeries for spinal fusion and have chronic pain for that which my husband lovingly supported me through...and now this. I guess I am fortunate that he sticks around given my limitations. But I guess that what Love is about, and I am sure that your husband does not feel as badly about it as you probably think he does, the best thing that we have found is to really try and communicate about it...make sure that you give him time to talk about how he feels about you having the disease and that you don't spend all your time talking about how awful you feel. (I know that is hard sometimes)

It is terrible that you do not have insurance. I am assuming that you are in the u.s? In canada, if you dont' have insurance you still get medical care anyway...so are you not getting any treatement for your disease? If that is the case that is horrible!!! I can not imagine living through that. You must be a much stronger person than you are giving yourself credit for. I hope things get better for you, and I am glad that you have found this group....if I can offer you some support in anyway, I would be happy to.....Take care.

Dani

37

Love those Authors. Constantly living the suck it up lifestyle myself also. Sometimes wallow, but only let myself do it for a max of 20 min on any given day. So far it's working..... Thanks Ron

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.

Much love to you and yours,

Ron

38

Hi Star,

I am struggling to find the words to say something constructive. I've got nothing. Sometimes when things are tough I repeat 'in this moment I am ok'. This moment is all there is. So far this has been true for me. BUT, I probably haven't repeated it when I was lying in bed crying unable to move. So maybe it helps on the moderately shite days. Embrace the internet. You are loved. Stay strong. Another quote that helps me in a deranged kind of way 'It will get better in the end. If it's not better, it's not the end'. Otherwize google images gisgusting pictures and tag yourself on facebook as them, or your loved ones. Laughter is sometimes all I have and it's better than nothing xo

Shel

39

Thank you ma'am for your kind words and a reminder you have given me of my own words. I have been having a bit of a rough go of it as of late and you just served my own thoughts back to me. I thank you for that.

Shel said:

Love those Authors. Constantly living the suck it up lifestyle myself also. Sometimes wallow, but only let myself do it for a max of 20 min on any given day. So far it's working..... Thanks Ron

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.

Much love to you and yours,

Ron