Letter to a dear friend

General
21


sybil said:

I don't understand the way this discussion has panned out. Victims? Who? Does what I wrote mark me out as a victim in anyone's mind? It's a pretty strong & insulting word to use. I think there's a difference between having a victim mentality and feeling scared / telling friends how you feel. Not everyone will want to explain their innermost fears or daily struggle to friends or to ponder those things themselves - depends on the individual, depends on the friends. Surely everyone approaches coping, surviving, living well with this disease in their own way .... I respect people who deal with things very differently from me as long as it's reciprocated.

thankfully Sybil. I understood what you were saying and I appreciate your honesty and openness. I saw NOTHING wrong with anything you said or how you worded it. Thank you!
22

I am dropping my “Moderator” title in order to write this response. This is my view as a patient. I have lived with PsA for a very short time. My diagnosis came one year and two months ago, along with my first flare. I suspect I have had it much longer, as I had joint aches and pains since grade school. I didn’t realize that until I caught up with an old girlfriend and we were talking about my new diagnosis. I expected her to be surprised, but she wasn’t. Instead she said, “it rally makes sense.” I gave her a questioning look and she continued, “I remember that you were always in pain. It was mainly your hips and knees, but they always bothered you for as long as I can remember.” There I go, getting side tracked again. I guess those are important to share so that you will better understand my response.

I have NOT lived with my diagnosis for a long time. When I was first diagnosed, I was very angry. Life was not fair, what had I done to deserve this, why me, and why was I being punished were all questions that went through my mind in those initial months. I was so bitter. People did not “understand” me. They did not understand “my suffering”; they did not “understand my feelings”. I became very self centered. It was all about “me” and “my disease”.

Someone who is now very dear to me, had the guts to call me out; to tell me just how self centered I was; how I needed to get over myself if I wanted to live. Needless to say, I hated him. I lashed out at him. I wrote nasty emails to his colleagues in order to have him removed from his post. He DID NOT understand MY FEELINGS. I cried, I felt like a victim, I gnashed my teeth and stomped my feet at this horrible trick my body had decided to play on me. Still, I was unable to find someone to understand MY FEELINGS. There was no one; no one really “gets” my feelings.

So, I hid away. From my friends, my husband, my children, my mother; I hid from them all. I was so filled with anger and venom, and I let them poison me. I was so miserable, I wanted to die. My disease, my anger, and my venom were killing me. I couldn’t move. I couldn’t bathe, I couldn’t work. I had given in and given up. No one really “got” me. This thinking was the poison that was killing me.

I don’t remember what the catalyst was. I don’t really think there was one. It was just on my list of things to do. A list issued to me by my Rheumatologist; it included physical therapy, pain journal, function journal, and counseling. I left he counseling for last, because I knew I was FINE. I was certain that the therapist would understand my feelings. He did not.

Slowly, he confronted me. He made me examine each of the feelings I had. I had a lot of them, and none were positive or healthy. They were poison. They were harming me. I did not need others to understand my feelings…I needed to understand them. I needed to grow up. I needed to realize that I am not owed ANYTHING by this world. It was time to find my own strength, let go of anger, let go of my venom, and stop seeking validation for the toxic feelings that I was carrying; it was time to climb down from my cross.

It was a slow journey, and a long one. I did manage to find my own strength. I began to live again. I started to take better care of myself. I went back to work. I realized that I was letting my disease and my TOXIC FEELINGS run my life. More aptly, they were ruining my life.

Why did I tell this really long story? I’m sure every one is wondering. Because, I see the same anger and venom in your posts, and in your responses. You do realize that you asked for other people’s feelings in your OP, Candi? Then when people gave them, you completely negated all of their posts and their feelings. They weren’t good enough, not deep enough. No one understands YOUR feelings? How dare you blow off what others are feeling? You do not know what things may help them get by, do you? This disease is hard enough! I come to this site for support and encouragement; I do not come here to have my feelings insulted by other members. I do not come here to see someone negating the feelings of my friends. Realize it or not, but you are the “victim” here. Until you are able to let the toxic feelings go, no one will ever “get” you.

23

Thank you, Seenie, and Nym. I know how difficult it can be, but believe me the honesty and openness of what you have both shared has,helped more than you will ever know. It is,so important to us meaning new comes to this disease to understand it, and how we are feeling. Especially from people who have had time to sort it all out, and make some sense of it. THANK YOU!!

24


GrumpyCat said:
I am dropping my "Moderator" title in order to write this response. This is my view as a patient. I have lived with PsA for a very short time. My diagnosis came one year and two months ago, along with my first flare. I suspect I have had it much longer, as I had joint aches and pains since grade school. I didn't realize that until I caught up with an old girlfriend and we were talking about my new diagnosis. I expected her to be surprised, but she wasn't. Instead she said, "it rally makes sense." I gave her a questioning look and she continued, "I remember that you were always in pain. It was mainly your hips and knees, but they always bothered you for as long as I can remember." There I go, getting side tracked again. I guess those are important to share so that you will better understand my response.

I have NOT lived with my diagnosis for a long time. When I was first diagnosed, I was very angry. Life was not fair, what had I done to deserve this, why me, and why was I being punished were all questions that went through my mind in those initial months. I was so bitter. People did not "understand" me. They did not understand "my suffering"; they did not "understand my feelings". I became very self centered. It was all about "me" and "my disease".

Someone who is now very dear to me, had the guts to call me out; to tell me just how self centered I was; how I needed to get over myself if I wanted to live. Needless to say, I hated him. I lashed out at him. I wrote nasty emails to his colleagues in order to have him removed from his post. He DID NOT understand MY FEELINGS. I cried, I felt like a victim, I gnashed my teeth and stomped my feet at this horrible trick my body had decided to play on me. Still, I was unable to find someone to understand MY FEELINGS. There was no one; no one really "gets" my feelings.

So, I hid away. From my friends, my husband, my children, my mother; I hid from them all. I was so filled with anger and venom, and I let them poison me. I was so miserable, I wanted to die. My disease, my anger, and my venom were killing me. I couldn't move. I couldn't bathe, I couldn't work. I had given in and given up. No one really "got" me. This thinking was the poison that was killing me.

I don't remember what the catalyst was. I don't really think there was one. It was just on my list of things to do. A list issued to me by my Rheumatologist; it included physical therapy, pain journal, function journal, and counseling. I left he counseling for last, because I knew I was FINE. I was certain that the therapist would understand my feelings. He did not.

Slowly, he confronted me. He made me examine each of the feelings I had. I had a lot of them, and none were positive or healthy. They were poison. They were harming me. I did not need others to understand my feelings....I needed to understand them. I needed to grow up. I needed to realize that I am not owed ANYTHING by this world. It was time to find my own strength, let go of anger, let go of my venom, and stop seeking validation for the toxic feelings that I was carrying; it was time to climb down from my cross.

It was a slow journey, and a long one. I did manage to find my own strength. I began to live again. I started to take better care of myself. I went back to work. I realized that I was letting my disease and my TOXIC FEELINGS run my life. More aptly, they were ruining my life.

well I don't feel I have negated anymore feelings. I am looking for a way to get thru this to, and for me it takes more than the spoon theory, I'm sorry if that upsets some, but add God ass I think the "spoon theory" is. I was looking for a little more from the heart feelings. True feelings. Oh I have dealt with this for many years just had no idea of what I was dealing with. I have been dismissed by so many by them telling me it was normal adding aches and pains. That I shouldn't be so tired, to take vitamins, to take herbs, to do this or that. I have not gotten any counseling. I am not bitter not at all. I just wanted to hear truths, since I am not sure if this all I find it hard stool to explain to myself why today my shoulder hurts and maybe a couple days, then it might not and my knees hurry, then r they may or may not quit yet I have another ache or pain. Then I question myself. I don't know how else to get thru this Everitt to all for the help of people who are also dealing with this. I assumed that that's what we were all here for was to help and answer questions from us or those who need answers. Who need the support of others, if it's got moral support, questions, decisions, advice, out lack of understanding. I was not aware that the forum, blog, discussions, would be turned against us.. However, I do appreciate knowing how you felt and how you have learned to deal with it. Why did I tell this really long story? I'm sure every one is wondering. Because, I see the same anger and venom in your posts, and in your responses. You do realize that you asked for other people's feelings in your OP, Candi? Then when people gave them, you completely negated all of their posts and their feelings. They weren't good enough, not deep enough. No one understands YOUR feelings? How dare you blow off what others are feeling? You do not know what things may help them get by, do you? This disease is hard enough! I come to this site for support and encouragement; I do not come here to have my feelings insulted by other members. I do not come here to see someone negating the feelings of my friends. Realize it or not, but you are the "victim" here. Until you are able to let the toxic feelings go, no one will ever "get" you.
25

Sorry for the way this “Smart Phone” edits some of my words. Please dint be upset by anything, I surely have not intentionally used any bad words. I don’t like the edit feature. Sorry hang.

26

Well, I am sorry I guess I have touched some nerves, and for this I appologize. I had no intention of doing that. I am learning, and trying to find some answers. I have a hearing coming up and am trying to get this a little more quickly than maybe some have needed to do. I agree with all of what all of you have said, but was looking deeper because I have to at this time. I have had so much trouble getting a proper diagnosis and getting to a place where someone could tell me I wasnt CRAZY or that I was over reacting to the "Normal" aches and pains of growing old. All the way down from my Primary Care Physician to my mother. They just couldnt understand why one month or one visit to the dr, I was having horrible pain in one place and the next visit it was somewhere else. Why I was so confused and lethargic and I tried to explain the "Brain Fog" at times, but even my PCP was so dismissive, he would give me, Oh I forget too, its called age. I just want to understand that the things I am going thru are what we are all going thru. I filed for disability because I am so tired some days I cant even bare to walk my feet hurt so desperately, and Some days I cant even think my brain is so fogged up. Days my fingers and hands wont work. At this time I cant even raise my left arm my shoulder is so bad. I have gone 2 weeks without a bra (which I NEVER do) just because I cant manage getting it on and off alone. I HATE depending on others and am finding I have to swollow my pride and do it anyway. So I do but just as little as possible. Well, I was turned down because my pcp couldnt tell them what was wrong and the bone dr said it was normal bone degeneration that comes with age, So when I get to the disability appeal hearing I dont think they will appreciate hearing the spoon theory as good as we all think it is. I know and understand, as I too have dismissed some friends who couldnt support or understand what I was dealing with, even dismissed my sister. But, I cant dismiss these people at the hearing. I had lost 3 jobs in a little over a year that I tried to work and some days just couldnt when i was having a flare. I would quit due to fatique or the pain of what I was doing was too much to bear, or would be dismissed for not being able to perform. I have as you all know only been seeing the Rheumy since June, and wasnt put on the Humira until a few weeks ago, which I only take every 2 weeks so it hasnt helped at all yet. I still nap most of some days and no less than 4 hrs a day at this point. MTX I havent noticed has helped at all yet. So I am just trying to find a way to put this "Guess I am not smart enough to know it well enough yet" to the Appeals Judge for Soc. Sec. Disability for Temp disability benefits. But I am NOT trying to make anyones comments unimportant and have tried to address them all. I feel like I should stay a part of the discussion I initiated. To let each and everyone know how much they help. Thats why we are all hear to help each other understand and cope. Thats what I thought. I cant say I am on a positive note all the time, but I am told I am a very positive person and I think maybe I said something that just didnt come out right to upset someone. If I did I appologize and did not mean anything nasty to anyone on this or any other discussion. I also want to add that there are a few that have really helped me with what they have explained, and I am sorry If I asked for more than you could deliver, it wasnt my intention. I do not consider myself weak because I know I am in pain, and although I dont admit it to everyone one, I felt this was one place we all understood the pain and I wasnt aware I had to be afraid to admit it or surcum to it. If we cant share it with each other then who can we share it with, no one understands it like we do. <3 thank you all!!

27

Candi, the thank you is greatly appreciated but quite unnecessary. I remember only too well the kindness, care and, yes, even blunt doses of reality that were lavished on me a couple of years ago as a newbie here. I'm happy to be able to give back now. This is a rough and very long road and it really helps to have supportive, honest and realistic (sometimes brutally realistic) people with you on your journey. The beauty of a support forum like this is the diversity of people that are here, and the many strengths and experiences that we have between us.

I've been reading and re-reading Grumpy's remarkable, emotional and passionate post. At first glance, it may appear harsh. But I hope that you will be able to sense the pain that Grumpy has gone through, and the peace that she is making with her condition. I think it must have taken quite a bit of courage on Grumpy's part to reveal the naked details of the difficult struggles that she had in those dark early days. Clearly, she has taken the time, and made the effort, to make the best of a very difficult lot. Finally, I am struck with the passion that Grumpy has for being helpful and honest, even if that means sounding a bit harsh in telling it like it is.
I guess what we are all trying to achieve is what someone here (Michael in Vermont, I think) calls "blooming where you are planted". Such a lovely expression. For me, that sums it up.
28

Candi Crivea, I think a small bit of what is going on is the fear that if we open that can of worms, we're all going to start thinking about our misery. A lot of support groups devolve into whine-fests, and not being super open about our miserable emotions here, may be a defense mechanism to help keep this group moving forward in a positive manner.

29


Think you may be right Marietta :slight_smile:


Marietta said:

Candi Crivea, I think a small bit of what is going on is the fear that if we open that can of worms, we’re all going to start thinking about our misery. A lot of support groups devolve into whine-fests, and not being super open about our miserable emotions here, may be a defense mechanism to help keep this group moving forward in a positive manner.

30

Candi,

I can certainly understand how anxiety (about your disability hearing) and pain can make you appear snappish when you don't get the answers you are searching for.

A lot of us here are on disability. You will find information about that up above under "GROUPS". There is a group on applying for disability. When I applied for SSDI I mad sure I had ALL my doctors notes, MRIs, PT and OT notes. Your doctor has you on Humiria, that speaks to it not being OA (osteoarthritis) or "normal aches and pains". I got SSDI on the first try and they made it retroactive thru periods I was working! I didn't know they could do that!

A lot of us have searched for years for a correct diagnosis. I searched for 30+ years. Some on here have had multiple joint replacements while searching. They understand the pain and frustration. Do not dismiss them so easily. They have things to teach you. Go back through old posts on here. You will find your answers.

A lot of us have been dismissed by family and friends who we thought loved us. My own mother said, when I offered to send her information on PsA, "I am really not that interested Dear". I was so stunned it took my breath away. But I learned I could not depend on her. I found I could depend on the people here. Even Grumpy. Even when I did not want to hear what they say; even when I do not want to see the mirror they hold. Go back and look at old posts. They will open your eyes.

I am sorry you are in such a terrible place right now Candi. But I do think when no one answers the question to your liking perhaps the problem is with the question. I was touched at how deeply Grumpy dug to answer your question. I know it was not easy for her to do. I also understand why you liked other peoles answers more than other peoples. It is because it is what you wanted to hear. So I would suggest the answer is within you. Read the old posts, join the Disability Group but most of all center yourself and do what you need to do to present yourself calmly at the hearing. Being angry and full of contempt will not get you the outcome you want nor the acceptance you seek.

Do not try to divide the moderators in a misguided attempt to conquer them. Seenie, Nym and I all have Grumpy's back. We do not divide easily.

31

If you trust your feelings, you are screwed. Don't confuse feelongs with your gut. You feelings will keep you firmly planted in one place and its generally not a good one. Grumpy and Seenie have given some excellent advice. I'm not sure where the idea that support groups job is to validate any feelings expressed, but its not. You can take what you get reject it or grow from it. But you have neither the audience, undertstanding, or support you think. You asked for feelings, you got em. Respect them or move along. Accept what you want.. reject what you want.

32

That’s the problem, Mimi. I get letting people grieve. It’s hard and sometimes unbearable. The problem is when another member asks a question, other members contribute, and then the original poster states that no one has sufficiently answered the question, and insults the methods that others us to bring themselves comfort. Had it not been for that, no one would have felt the need to respond at all.

How each person handles their disease is their personal choice. However, letting your own anger and unhappiness infect others is not.

Folks here are helpful, but will cease to be so if their suggestions and feeling are put down. There are posts that do nothing to encourage free conversation. If you are only looking for one thing, then chat with your friends. Don’t bring it to the group and then criticize when you don’t think their answers are up to par.

33

Yes mimi, I do believe support involves respecting and sometimes validating feelings. But not all feelings should be validated to my way of thinking. If all feelings are validated I think it can degenerate into a whiny bitch fest very quickly. I think that is where a lot of support groups go astray IMHO.

I think for a support group to be effective for an individual AND for a group it needs to support heart AND head. Sometimes when feelings are that loud the head can not be heard. I think BOTH head and heart deserve to be supported with support and education IMHO.

It IS all about growing where you are planted!

34

I think there has been a time on this site, in the past, were people appeared to be “outdoing” each other on their own misery and pain stories. This is one reason I like this site is because its NOT a misery fest. We all have a shitty time quite often and often need to vent, weep,laugh, and shout at the world with those who can understand, but its not the main focus and never will be I hope.
We all cope in differing ways and that’s where, collectively, our strength lies

35

There is always more to a story than what meets the eye.