Just a friend.

[ThatGuyJason]

I do not have the misfortune of having Sjorgen's.  I can only imagine the pain, discomfort, irritation, and struggle that it associated with it.  I do, however, have a friend with it. 

I am here to learn everything I can about Sjorgens, try to better understand and appreciate what my friend is going through, and more importantly, what I can do to be a better friend. 

I assume that most of the people here in fact have Sjorgens, and I feel for you.  Is there anything that I can do as an outsider to help with anything?  I understand the exhaustion means you are not able to go out and live life to the fullest, or even as much as you would like.  I understand the dry eyes limiting when and where you can go.  I am trying to learn all I can about the various medications and how they work (I have a mild medical background with 10 years of being a medic in the Navy and a paramedic). 

I know I have the typical male mentality, and want to fix everything.  And that there is no real fix for Sjorgens.  But what can I do to make things more tolerable?  What do your friends and family do that helps you?  What shouldn't I do?  What do you find that people do that bothers you the most? 

I understand that my friend is not Sjorgens, and that it is just part of who she is now.  She is a real person, with feelings, likes, dislikes, good times and bad times.  I also understand that Sjorgens has a myriad of symptoms of varying degrees that effect everyone differently.  I don't want to pity her, but learn how to interact with her better.  I want to be a better friend.

[Liz D.]

Wow, I want you as a friend!!   You are so kind to want to learn about Sjogren's for the sake of your friend.  If you look through the different posts on this forum, you will find a lot of information that will help you understand!

Just my two cents worth -- when your friend is feeling fatigued and feels like she just can't keep up, believe her!  She is not being lazy.   Any trips or exursions you take, keep her limitations in mind.   This has been an adjustment for me and my husband.  When we were younger, we used to travel much more and be more adventurous.  All I can really handle now is renting a cabin on a lake in New Hampshire.  I am very fortunate he likes that, too.  (I had to do a family trip to Disney last year and it totally wore me out!)

Another thing -- if she is in a flare for a long period of time like for weeks (which can happen), don't say "Are you still sick!?"  That is my biggest pet peeve.  The point is we are always sick, just some times worse than others.  When some of my friends don't understand that, it can be very discouraging.

I commend you for posting!!  You are a true gentlemen!

Liz D.

[season]

WOW. Hi ThatguyJason. I really like you.

I think what I would most like to hear from my loved ones and friends are the simple words, "If you need anything and I don't care what, when, where or why, all you have to do is let me know. I"ll be there for you and I will try my very best to never let you down. You can talk to me always."

It would be wonderful to hear those words and know for sure that they are true.

Your friend is very lucky. You already care.

[ThatGuyJason]

I hope to become friends with all of you.  And I like to believe that if the roles were reversed, she would do the same for me. 

I appreciate the quick and positive responses.  It tells me that y'all are a close knit group and very helpful.  I hope I can learn from your experiences to better grasp the magnitude of all of this.

I ask for your forgiveness now, if I ever ask a stupid question, can't quite wrap my head around something, sound as if I am belittling, or anything else, but I will always try to be respectful.

I know I have about as much chance of really knowing what it is like, as I do of knowing about menstrual cramps or child birth (or women in general, for that matter).  But hopefully if I am armed with knowledge and get more insight, I can not only become a better person, myself, but be more supportive and help ease the tremendous burden on her.  I know how difficult it is to try to explain something that the other person can't possibly understand, I just want to become one less person she feels like she needs to explain things, too.

[CAT1962]

Seriously?? And, a lot of us can't get our FAMILIES to understand! What an awesome person you are! These posts say it all...just know she isn't being lazy, that it really does hurt, she really is tired. I am told my by my husband and kids that I "just don't want to do it", or "you need to lose weight.".Etc...stinks...

[Bucky]

Jason - you are such a caring friend.

When you get a chance, read The Spoon Theory - it will help you understand a little bit of what your friend goes through day-to-day.  Maybe that could be a code word between the two of you - spoons . . . . all she has to do is say that, and you'll know how her day is going.

How long has your friend had Sjogren's? 

Maybe help her out around the house now and then or run errands for her.  If she works and also takes care of a home/apartment that can take up a bunch of spoons right there.

Most of us here with Sjogren's will tell you that we tire more easily since the diagnose.  We use to "do it all", now, we can't go, go, go like we use to.  We have to pick and choose the events/parties we go to.  Each day is different, it's so unpredictable. 

I'm sure you will get many responses, so I won't make a list for you right now.   

On behalf of us fellow Sjoggies (as we call ourselves) - thank you for being so thoughtful and caring.

Bucky

[ThatGuyJason]

I have read the spoon theory.  She sent me a link awhile back.  And it does help explain things a bit.  But I understand it only really applies for the exhaustion.  Am I misreading it?  Is the exhaustion the biggest complaint?  I reckon it could apply with the RA, as well. 

As far as taking her word that she is exhausted, I will.  Try not to push her beyond her limits.

Don't ask if she is STILL sick, she is always sick.  Just ask how she is feeling.

Be supportive!!!

[Nancy60]

Wow Jason,

Your friend is really lucky to have a friend like you!

I would say the one thing I wish my friends/family would do for me is just accept me when I decline to go somewhere/do something, because I am tired or don't feel well, don't take it personally or pity me, just understand that I am not up to things sometimes and it is OK to feel that way.

Maybe try to plan to do things with me in advance so I know it is coming up and can make sure I get some rest before hand.  that doesn't mean not to ask me to do something if it is just spur of the moment, I might feel up to it, but if I don't, don't get offended or take it personally.  

Maybe also to understand that doing just 1 or 2 things at a time is enough, don't try to cram 5 or 6 things into an afternoon because it is just too much for me.

It is so thoughtful of you to put the effort into learning more about Sjogren's and how to help your friend!  I hope you let her know about this site too, the support of being able to talk with others who are dealing with the same thing is such a help.

Nancy

[CAT1962]

I have two main complaints, Jason...the fatigue and joint pain and stiffness. Unbelievable fatigue/. I have 4 kids and it is hard to to thing, even go to the zoo like I did the other day. Two hours of walking and I was beat!

[Pisces24]

Gosh that is soooo nice of you to want to understand what someone else is going through!
Most people we get the "well you look ok to me so you can't be sick".  

To be honest a shoulder to lean on when we need it and an ear to listen ar the most important.
Everyone has a different plethora of symptoms to deal with the Sjogrens. Some it is debilitating with and others function just fine. We all get monitored so the doctors can catch anything early that pops up.  It means a heck of a lot to have someone just understand or accept us and not think that it is all in our heads, all we need to do it take or do XYZ and we'd be fine or that we are just lazy.

As to wanting to fix everything, I don't think it is too much of a specific "male mentality".  I was a caretaker to my folks for many years. I wanted to "fix" them so much but couldn't. In time is it like the Serenity prayer- Accept the things you can't fix, Fix the things you can and have the Wisdom to know the difference.

Thanks for caring and understanding!!

[ThatGuyJason]

While I appreciate all the kind words.  It is y'all who deserve all the praise.  I am only trying to grasp what it is that you are going through.  At the end of the day, you are still dealing with it, I am not.  You have the courage to wake up everyday and face the world.  While some days are easier than others, you still go forth and give it your all.  If I were to work to the point of exhaustion everyday, I would be a lot more productive.  I don't have the gumption to give everything day in and day out.  And for that I applaud you.

Offer a shoulder to lean on, an open ear, and a few kind words.  That sort of sounds like good advice for any relationship, but point is taken.

Once again, thank you kindly for all the great advice.  I will try to plan things in advance, no prolonged standing, no long walking periods.  What about rides in a car?  The occasional motorcycle ride? 

[Scottietottie]

Hi Jason 

Welcome to Sjogren's world.

Quite apart from how we feel - one of the things that most of us encounter is overwhelming ignorance - so it's great to meet someone who's educating themselves. What we need is more people to know - and to be aware of this disease and other autoimmune diseases come to that. We need more medical people to be aware of it. It's amazing how many doctors will pass it off as "Oh - that's just a bit of dryness!"

So ask any questions you want in here. You'll get answers. Then spread the word!! Your friend must find you a wonderful support.

Take care - Scottie 

[ThatGuyJason]

I am no longer in the medical field.  I just recently got out last summer.  I had become jaded and found a lot of people aggrevating.  Not someone who you would want to take care of you, I tried to curb my anger from seeing the same patients over and over.  Usually just wanting pain meds without going to the hospital.  I had patients who would use me as a taxi service.  I would take them to the hospital and then they would get up and leave.  They just wanted a free ride across town.  I am honestly trying to work on becoming more compassionate, but I figured out I should get out before my growing prejudice for the people led me to overlook something.  I am not perfect, and never wish to portray myself as such.  Now that I have removed myself from the situation, I am a happier person.  And I find that I can be more compassionate when I don't have to deal with so many people.  I started out caring about everyone.  I would follow up with any major call and often spent my days  off visiting my patients in the hospital.  That became too much and I couldn't leave work at work.  Then I began to harden until I did get jaded.  Then I felt that I wasn't providing everyone with the unbiased care the could deserve so I left.  I still follow the medical community and am an active member of my local volunteer fire department.  But my call volume has dropped from 100+ calls a week to less than 10 calls a month.  It is a better pace for me, and I enjoy it again.  Far too often, when we start to get paid for what we enjoy, we lose the joy in doing what we are getting paid for.

[hootyhu1]

Wow Jason! I wish my husband's attitude would be like yours! He is slowly trying to wrap his head around my new DX but sometimes he thinks I'm just complaining. My biggest issue is the fatigue and joint pain. I still work full time, my husband is active duty Navy so sometimes I am a 'single' parent to our 18 month old. yeah, it is exhausting but sometimes I dont have a choice about it, I have to push on. When my husband is around he does help some (sometimes not as much as I would like) and I can rest some. We are learning to deal with this together and you and your friend will too.
-hootyhu

[lynnmarie219]

I also applaud you for taking the time to learn more about sjogrens to help your friend...how lucky she is to have someone like you in her life!

This has been said by some of the others but I will say it again....the most hurtful thing I have heard is when someone accuses me of being lazy or trying to get attention by being "sick". Most of my energy goes to working a full time plus hours job because I need the money and especially the insurance...so the last thing I want to hear from others is that I'm lazy because I cant keep a perfectly clean house or don't want to do always extra things in the evening or on weekends. And sometimes I do want to do other things but may just need to slow it down here and there.

Thanks for being there for your friend..I'm sure she appreciates you!