Never quite sure

General
1

Whether to post here or not. First I want to thank all of you who have been so supportive to me over the past few months as I have tried to learn how to cope with this disease and to move on with my "new" life. At times the pain and flares have been terrible and it has been great to have all of your words of wisdom and support. While my life still isn't 100%, I am feeling better. The meds have definitely helped with my hands (my main problem and source of pain, I have severly deformed fingers but hey guys I am now typing with 2 hands and only making - I think - a few typos) but I am still having trouble with my knee and foot but not like it has been - so I am hopeful the meds are working there as well .I am just impatient and can't understand why my foot still wants to be a problem - I have shoes I want to wear, really cute ones and I can't right now. Unhappy face! And I guess we will wait and see what the MRI results show on my back which seems to be the new problem area right now. He thinks it is something I can't even spell, but I have seen that some of you have.

So while I am not well (ok so I guess none of us ever are) I guess my thought is tonight as I read thru the posts is do we only post problems or troubles? Don't get me wrong, I know that we all have things to complain about and want help and suggestions on, but does anyone ever just want to start a post about how we have had a great day and want to share? I would love to hear about your days, your families, your fun, etc. Am I on the wrong site? I want to be somewhere where we can share discussions about our disease and how we deal, but I also want to be somewhere I can look forward to better times and better days. I try not to be a negative person and am always looking for the best, and while it's hard I am trying to look for the best of this disease and how we have to change our lives. I for one don't want to let this disease beat me and I am going to do everything I can to stop it and get better. OK, so maybe not but I am not going down without a fight.

So anyway, just a thought. Anyone want to go with me to start positive threads, share a great day or experience or a thought? Or you guys can just kick me off this site if I am on the wrong track here. Here's to hoping for some positive thoughts and experiences soon!

2

I would love to join you on positive threads! Lead the way. I am still pretty new to all of this so still trying to find my way

3

Dear MAT, I think it's a nice idea and I admire your fighting spirit and your determination to look for the best. I'm very glad to hear that you are seeing improvement with your knee and foot, and especially with your hands, since you say they have been your biggest problem. Hands are very handy to have (no pun intended). I like the way that you can look past the fact that they are deformed by this disease to the fact that you can type with them - and I don't see any typos!

I can trace PsA and problems related to it back as far as my great-grandmother. My mother had psoriasis, and all five of her children have 1-3 related problems. My younger brother and I are the only two who have PsA, and my brother's hands are deformed, but he never lets that stop him from anything, including a major, mid-life career change that involved getting his commercial pilot's license. He's an inspiration to me, although he is a lousy correspondent!

I think I'm incredibly lucky that my symptoms didn't manifest themselves until I was in my 50s. I read how a lot of people here are dealing with trying to raise children while dealing with their PsA, which is a hard enough task by itself. Or they are trying to start or sustain careers and that is another hard task by itself. My grandchildren are my joy and motivation for hanging in there, and my husband is so good and generous to me, so those are some of the good things in my life. It's 3 a.m. here and I'm not thinking as clearly as I will be later in the day, but I wanted to say thanks for your positive thoughts, MAT. I hope that today is a good one for you.

4

Here is a positive. I cannot weight bear on my left foot, but managed to go out riding for an hour yesterday. I LOVE getting one over on PsA. I do tend to agree with you MAT we do not often post the nice things in our lives and focus on the PsA on here ....but maybe you are right lets post the good things as well as show support with the bad ones. BTW I have a pc program that types as I speak (my hands are affected too) might be worth looking into. Stay positive :0)

5

Great idea!

I just think that most people only think to reach out when they need support, but it is not out of line to need some uplifting posts too.

As for myself, I am slowly getting used to the new normal. My dx was almost a year ago. Many changes have occurred, but not all of them catastrophic. I'm learning to rest which is something I could never do and it isn't so bad. : )

I'm also learning to ask for help, even for the little things like grocery carrying which is also something I never did). Again, this is not so bad a thing.

6

I think I like this site because I am positive all the time with everyone! When someone says "how are you? I lie and say great! I don’t complain to ppl or family, I just keep going, so I find this site helps to vent just a bit and know there are other ppl that are dealing with the same and how they cope. While I love your idea and believe in the positive the “negative” blogs help too.

7

I tend to be the same. Not only can I vent about things, but I can also vent about my future worries. I love getting been there done that suggestions from others, as well as finding out what may be typical, and what might not be.

Bratt3120 said:

I think I like this site because I am positive all the time with everyone! When someone says "how are you? I lie and say great! I don't complain to ppl or family, I just keep going, so I find this site helps to vent just a bit and know there are other ppl that are dealing with the same and how they cope. While I love your idea and believe in the positive the "negative" blogs help too.
8

I'm not sure openly and freely discussing ones disease is a positive or negative thing. The purpose of a support forum is to be able to just that. We have people with success, and people without. you basically have a few types that come to the forums those with questions and need for information. They get what they need and move on. We have those who have their rear ends so firmly planted on the Pity Pot, that they may never get them removed. But sometimes their attempts to garner as much sympathy they can and usual attempts to one up someone elses problems ("I had that but my doctor said it was the worst case he ever saw") backfire on them and they take charge of their disease and actually move forwards. But many of them are just plane unhappy (here or anywhere) I make it my mission to make sure they don't bring others down (we all should) If we do so we can actually bring them up (and ourselves as a bonus)

But this board has an unusual amount of the other type; those who want "friends" with whom they don't have to phony. We can be down, we don't have to hide out from our friends because we are. We can share our ups and generally be free of the suzie downers (you know, "I start flooglezine and I'm feeling better", only to hear "Well i'm glad it worked for you, it turned my pee fluorescent orange and made me restart puberty") There is always someone to take joy.

If you want real and support, this is the place. If you want a unicorn ride probably not. I'm all for the positive but to try and convert this (or any) forum into a "positive place" when its purpose is to be an place for people to talk about a lifelong progressive and crippling disease might require everyone be eating warm brownies with organic additives.

9

I’m all for the warm brownies with organic additives, Lamb! Seriously, positives are great, and we do share them here. But at the same time, I find it very comforting to know that “out there” (that would be, “in here”) there are people who really do understand what I’m going through, and with whom I don’t have to put on my happy face and pretend that I’m just fine when I’m not.
On a positive note, I’ve switched to 24 hour release tramadol, and it’s working really well for me – taking less medication, including less tylenol. Fab!

10

Honestly, As of late I have been using this forum to stalk Lamb’s responses, which make me crack up! I have learned not to try to eat or drink while reading them, because it usually ends up in a mess!

I get that we need some positivity, but I think that most of us here aren’t doing well. That is why we come here to rant, cry, and seek support. If we felt well, we would be off doing things other than spending time on a forum for PsA. I try to see the sunny side, even when I’m on here. But if I am down, I need to have a place that i feel comfortable being a hot mess.

But, I will give you a happy story, since you asked! I feel pretty awful right now. I hurt all of the time, but the last few days have been particularly bad. Anyhoo, as we know, yesterday was the Super Bowl and my family and I were invited to a party at a very close friend’s home. Normally, I would be ready to go visit her at the drop of a hat! She always has a great spread of home cooking, plenty of wine, and a light, friendly atmosphere. But, with the pain being uncooperative, I just didn’t to make myself even try to get ready. The kids really wanted to go and had been talking about the party all day, so I made myself get in the shower and make myself purdy. I’m glad I did. No, I didn’t stop aching, but I had a great time anyway. I even showed an unusual amount of coordination by dancing with the girls (cane and all) during the Beyonce half-time show. I ate all sorts of things that I shouldn’t, had some yummy wine, and got to feel like myself for a while. Sometimes, doing things just so that you don’t disappoint the kids is a good thing.

11

Way to go Grumpycat, glad you enjoyed your night. Been there myself and it can be such an effort sometimes so well done, and I hope you feel better soon…from a kindred spirit :0).

12

I was matched with a psoriatic arthritis mentor today - and that makes me happy !

Frances

13

For me it's hard to be positive on a forum like this - I usually can laugh and smile about anything, but I need to be face-to-face. Writing back and forth online looses the flow of witty banter and the opportunity for humor, at least for me. That's why I've been looking for a local support group - haven't found one. Arthritis Foundation replied that they don't have any.

I did find a Psoriatic Arthritis meetup.com group that meets in Santa Clara, Ca. The leader is very pleasant and is going to try to incorporate me into their meetings by conference call (I live in Virginia).

14

WOW, such responses to this post, my best day post and those of you who chose to send one to me personally. I think if everyone read my post I said this group has been such a huge support for me as I am trying to learn how to live with this disease and make the necessary changes in my life to do so. I love having a group to be able to b___, scream and yell about all I am going thru and so many of you have offered me your words of wisdom, advise and tricks that you have learned to help all of us recently dx people with this disease.

I just thought that with all the pain and suffering that we all go thru on a daily (or mostly daily) basis that it might be nice and fun to see when each of us are able to enjoy our lives, our families, friends and loved ones and the good times we are able to have even while living with this disease.

I never meant to take away what this site is for, I only thought about perhaps making it better.

Gardener I too didn't get a dx on this disease until I was in my 50's although I am quite sure I had it earlier given the deformity in my hands but just couldn't get any doctor to agree that something was wrong with me. I too can only imagine what it would have been like to raise my beautiful daughter with the symptoms I have now if I had all of them then and I admire those of you who do.

Juniper I love the fact that you were able to go riding and enjoy something that you love!

Bratt3120 and Stoney and Seenie I totally agree that we all try and be positive with our friends and family and need some place to vent, I never said otherwise. I just think that as we are having a bad day, week, month, etc that during that time something positive and fun has to be a part of our lives and it would be nice to see that part of this stupid disease as well. And how we don't let it beat us, that no matter how bad we hurt and have problems that we still have a lot to be thankful for.I for one love seeing what others are able to do and accomplish and I hope to one day be that way too! Even though sometimes their good day is only that, a good day.

Lamb your responses crack me up! I would like to place an order for the brownies, I will send you my address! As I just told all of you my age you can guess the generation I grew up in! Oh, to relive some of those days - or now that my head is clear it probably is not a good idea! Although I have to tell you that grapes are my favorite fruit! One of the things I really miss with these meds is all of those different variations of grapes - chard, pinot, merlot, etc.. Sigh.

See Grumpycat, this is exactly what I meant. You were having a bad day but went out and had some fun. My only question though is did your do your dancing tabletop?

For the others, I will continue to post how bad I can be some days, how I need support but I will also post my good things too. Thank you for your support and encouragement.

I am sorry if I offended some of you, it was really not my intent.

15

I'd like some of those brownies :-)

tntlamb said:

I'm not sure openly and freely discussing ones disease is a positive or negative thing. The purpose of a support forum is to be able to just that. We have people with success, and people without. you basically have a few types that come to the forums those with questions and need for information. They get what they need and move on. We have those who have their rear ends so firmly planted on the Pity Pot, that they may never get them removed. But sometimes their attempts to garner as much sympathy they can and usual attempts to one up someone elses problems ("I had that but my doctor said it was the worst case he ever saw") backfire on them and they take charge of their disease and actually move forwards. But many of them are just plane unhappy (here or anywhere) I make it my mission to make sure they don't bring others down (we all should) If we do so we can actually bring them up (and ourselves as a bonus)

But this board has an unusual amount of the other type; those who want "friends" with whom they don't have to phony. We can be down, we don't have to hide out from our friends because we are. We can share our ups and generally be free of the suzie downers (you know, "I start flooglezine and I'm feeling better", only to hear "Well i'm glad it worked for you, it turned my pee fluorescent orange and made me restart puberty") There is always someone to take joy.

If you want real and support, this is the place. If you want a unicorn ride probably not. I'm all for the positive but to try and convert this (or any) forum into a "positive place" when its purpose is to be an place for people to talk about a lifelong progressive and crippling disease might require everyone be eating warm brownies with organic additives.

16

Mat,

I wasn't offended. Here's a great book I started reading about how you can change your happiness level by changing your perception of things, just smiling and other simply techniques that re-train your brain. It also discusses neurological studies that measure physical increase in health as your happiness increases. And you don't have to go to a doctor !

The Happiness Advantage It's a short book.

I'm "happy" to mail to anyone when I'm done - just let me know

17

Hey Frances, I live in NC and can't seem to find one here either which is why I decided to join this site. Can you send me the info on that group so I can check it out as well.

18

Just saw your post about the book, I will check it out. Thanks!

19

Hi Mat,

Let me know if this link doesn't work for you. If you aren't familiar with meetup.com, it is a site that allows people around the world to start groups about anything. You will need to set-up an account - it's user friendly. Let me know if you need help with it. I've been going to meetup groups for years. Also, you may want to request a psoriatic mentor at psoriasis.org

http://www.meetup.com/Psoriasis-and-Psoriatic-Arthritis-Support-Group-of-SCV/

20

Thanks and will check it out!