Finding the middle

General
1

Not only is it tough, but often unrealistic to expect us to be overly optimistic, it can swing us too far into denial. It's not easy for those around us to understand our limitations, as we so often push ourselves past what we are comfortably capable of.

It can be a struggle, get you down, HOWEVER, there is something good, beneficial, outstanding, uplifting happening in your life that you could be overlooking, overshadowing.

Yes, we have a place to vent here, to moan and groan, but the very best we can do for ourselves and each other is to keep an eye on the good stuff.

Reassuring ourselves and each other is the key to a support group, telling each other what helps is what a support group is all about. Referring each other to the best Doctors, clinics, and hospitals is supportive.

Each person here is someone's daughter or son, mom or dad, brother or sister, best friend or child. Help uplift and reassure each one here as if you would want your nearest and dearest supported.

If you need more time with your Doctor, call for another appointment, instead of making an appointment with only one specialist, seek out two, three. By all means if you feel at the end of the rope, call 911, find a professional to talk with, call the crisis hotline. Please!

Lets help each other find the most comfortable place we can within our body and mind.

Lets help each other find the middle.

2

I like you're thinking, Kaz!

You are so right to look at the beauty around us. To voice our appreciation of the things we still have, can do and accomplish.

3

You are absolutely right Susan....and I plead Guilty to being negative too often. I think that it is because some people ( mostly my friends at church) are blindly optimistic, and they refuse to acknowledge the illness and it's severity...and its impact on my life. I need to remind myself that the people here all DO understand and I don't have to convince them about how much I hurt or how how much these diseases will impact my future. The need here is for me to encourage my friends here to keep putting one foot in front of the other and to get through another day.

Recently, I was taking Otezla..and I fell prey to one of the side effects...which is depression and suicidal thoughts. I stayed away from this site then... not wanting to spread my bleak outlook. Because I made a foolish remark to my pain management doctor, he refuses to treat me anymore. I knew it was the otezla talking. and not me but he was having none of it. So now I'm off that med and back on Arava..and looking for a new pain doctor.

Point being? I cannot go around spreading negativity without consequences. I know you are here to support.... but so am I and I apologize for taking and not giving. I confess that I do not know where to go with my depression...I know ideally I should have a therapist...however I cannot afford the copays. I do have a case manager...maybe I need to utilize her more for that.

Anyway I will try to be mindful of the fact that people here need encouragement.... not sappy, blind "positivity" but true heartfelt support.... thank you, Susan for the reminder.

4

This is a great idea, Kaz!

Kaz said:

I also think it is important for our mental health to focus on something good that has happened in our day or week, as there is always something good if we look for it - a beautiful sunrise or sunset. Perfect weather where we were able to do gardening or go out with friends. See a movie we wanted to see. Catch up with family or friends. So maybe we should have a separate post where one day a week we can all post something that happened to us for the week that made us feel good or happy :-) As it is hard living with SS, and most of us deal with co-existing conditions we well. So let's have a good news week post. I might start it off.

5

You are absolutely right Susan....and I plead Guilty to being negative too often. I think that it is because some people ( mostly my friends at church) are blindly optimistic, and they refuse to acknowledge the illness and it's severity...and its impact on my life. I need to remind myself that the people here all DO understand and I don't have to convince them about how much I hurt or how how much these diseases will impact my future. The need here is for me to encourage my friends here to keep putting one foot in front of the other and to get through another day.

Recently, I was taking Otezla..and I fell prey to one of the side effects...which is depression and suicidal thoughts. I stayed away from this site then... not wanting to spread my bleak outlook. Because I made a foolish remark to my pain management doctor, he refuses to treat me anymore. I knew it was the otezla talking. and not me but he was having none of it. So now I'm off that med and back on Arava..and looking for a new pain doctor.

Point being? I cannot go around spreading negativity without consequences. I know you are here to support.... but so am I and I apologize for taking and not giving. I confess that I do not know where to go with my depression...I know ideally I should have a therapist...however I cannot afford the copays. I do have a case manager...maybe I need to utilize her more for that.

Anyway I will try to be mindful of the fact that people here need encouragement.... not sappy, blind "positivity" but true heartfelt support.... thank you, Susan for the reminder.

6

It is a good idea to update your profile and list the meds, drops, toothpastes, goggles, type of humidifiers that have actually been beneficial. This way when a new member comes in search of answers, they will find a few just by looking at your profile.

It is just another way to make this a more positive minded, solution seeking support group!

I just took a good look at mine and edited it! It is now much more helpful, and less frightening, to others!

7

Ok, I updated my info too. I know I definitely need to make a better effort at being positive. It is just that here people understand. I really don't have anyone else who does.

8

Qadosh2him, perhaps a neuropsychiatrist/psychologist would be a good person to help? They are doctors that deal with neurological brain issues. They would know when it is the pain/illness/etc.... talking and where it is other issues and help you through it.

Qadosh2him said:

You are absolutely right Susan....and I plead Guilty to being negative too often. I think that it is because some people ( mostly my friends at church) are blindly optimistic, and they refuse to acknowledge the illness and it's severity...and its impact on my life. I need to remind myself that the people here all DO understand and I don't have to convince them about how much I hurt or how how much these diseases will impact my future. The need here is for me to encourage my friends here to keep putting one foot in front of the other and to get through another day.

Recently, I was taking Otezla..and I fell prey to one of the side effects...which is depression and suicidal thoughts. I stayed away from this site then... not wanting to spread my bleak outlook. Because I made a foolish remark to my pain management doctor, he refuses to treat me anymore. I knew it was the otezla talking. and not me but he was having none of it. So now I'm off that med and back on Arava..and looking for a new pain doctor.

Point being? I cannot go around spreading negativity without consequences. I know you are here to support.... but so am I and I apologize for taking and not giving. I confess that I do not know where to go with my depression...I know ideally I should have a therapist...however I cannot afford the copays. I do have a case manager...maybe I need to utilize her more for that.

Anyway I will try to be mindful of the fact that people here need encouragement.... not sappy, blind "positivity" but true heartfelt support.... thank you, Susan for the reminder.

9

Finding the middle is a good way to put it. Be realistic about what we have but don't run ahead worrying about it. I've had so many little blessings and amazing moments in the last few weeks that it has actually woken me up to the fear of being positive I've had. We only live once and I want to see every beautiful moment I can.

10

SK, finding the middle ground and a good balance is the best way to go. We can't expect to try to pretend that everything is perfectly "fine" and try to be cheery and happy all the time just to please other people. But at the same time, you do have to try to appreciate good things when they happen and enjoy your life the best you can. When I have a good day, and feel like I have more energy than usual, I try to take full advantage of it and have as much fun as I can and do everything that I want\need to get done. Thankfully, Plaquenil does seem to be helping me, and I've been having a lot more good days than I used to!

In addition to Sjogren's, I've also had problems with depression off and on since I was a kid. One thing that kind of helped me was to try to find one thing that I enjoyed for myself every day...no matter how small or insignificant it might seem. Like the advice people are giving here. It could be anything...finishing reading a book or magazine, learning a new word, seeing a nice sunrise or sunset, seeing a picture you like, anything. That way, no matter how crappy the day was, at least there was something in it that you enjoyed, and so it wasn't a total waste. We are here to live, not to just exist.

11

Good replies! Thanks so much to everyone who responded!

Keep looking up, my friends!