New Here But Not Too Happy About It....

[musstang4u]

Hello,

I hope everyone is feeling well today. Myself, am a little confused. I'm 57 years old this past July 5th and just now, after years of complaints, been diagnosed with SS. Thus far all my bloodwork has come up negative. My rheumy diagnosed me 10 yrs ago with fibro, secondary Lupus.... now SS? All I want to know is what the hey is going on with my body and what exactly do I have?

Sorry, I don't mean to whine... but I have too much to do in this life and places I want to go... yet I hurt, I'm tired, and I feel bogged down by all of this. How do you just not worry about it or go through life using mind over matter? I will trust in the Lord to help me get through this.

Thanks for listening.

[Cheryl]

Welcome to our site, Musstang.  I'm sorry that you have the news of a new diagnosis to deal with.  If you have Sjogren's, it's probably been there all along with your fibro and lupus.  It's just another name for what is already wrong with you.   Those of us with autoimmune issues often have multiple diagnoses. 

I'm sending you a hug and reassurance that you aren't alone.  Within reason, you can still do the things you want to do and visit the places you want to go!  Take one day at a time, and pace yourself according to how you feel.  Hang in there!

Hugs,
Cheryl

[iraisin]

Yes, welcome Musstang. So, so sorry for your pain and anguish with all that you have going on.

I'm sure your schedule is full and your energy is empty with it all.

As far as managing it all, I'm still learning how to manage my one diagnosis. But there are some things I plan on working in and some I have already started that you may want to consider working in.

Yoga, modified for arthritis sufferers, as your rheumy for advice on where you may be able to go.
Chronic illness counselor.
To help with the med money, you may want to contact the pharmaceutical companies that supply the meds, see if there's a program they have that can help keep you in supply.
Look to your community programs, see if you can get on a list for volunteers to come over from time-to-time and get some help for things around the house
Call your grocer, see if they will deliver.
Ask some teens in the neighborhood to help with the lawn, weeding, whatever.
Examine everything, see where you can cut back on your energy and take advantage of all help/alternatives as best as you can.

Come here often and get love and encouragement. This is a vent-at-will pressure relief valve location that is at your convenience. We understand you.

((((HUG))))

[lynnmarie219]

Hi Musstang and welcome to Sjogrens World!

First off, please don't ever feel the need to apologize for putting your feelings out here for others to help or to get things off of your chest. That's what this site is all about...being able to share with people who really do "get it". We all do it from time to time and its very helpful and therapeutic!

Secondly, if you were recently diagnosed....just take your time in accepting this...you will find you have good days and bad days and are probably already used to this type of lifestyle if you have already been diagnosed with fibro and lupus...as has been said...autoimmunes many times come in groups and the symptoms overlap so much its often difficult to say what is what even for the doctors. Are you on any medications that can help alleviate some of your symptoms to make your day to day living any easier?

You said "but I have too much to do in this life and places I want to go"....you can still live a full and happy life...you just need to pace yourself and make adjustments and adaptations as needed...please allow yourself to rest when needed, take good care of yourself when you are in pain, but never forget the good days and take full advantage of them to live your life and enjoy the things your like. 

I hope you read all you can here and ask any questions you may have as they come up...you will find a lot of information,support, and friendship here! 

[musstang4u]

Thank you everyone for your kind words... it really does help, because I really do feel all alone in this. There's only so much you can say to friends or family, because they really don't understand at all, because I don't look sick... except for the days my face is really swollen out, then I look pretty wiped out. People just think I've gained a lot of weight... great! LOL!

Someone asked if I am on pain meds and no I'm not. Any fibro meds I tried made me deathly ill. They told me to stop taking right away. I did try a myofacial release... it made me feel sick, but, I think I want to try it again as it did feel good when I was getting it.. just later wasn't too great.

And Yoga... yes... I do and need to get back to Yoga. But just now I need the gentle one as I really couldn't do the beginners class anyway.. just some of it.

Well, I hope you all have had a relaxing weekend. And I am going to try to stay positive. I know the Lord has me here for a reason, and I won't ask why, for there's so many in much worse shape than I. Gentle hugs to you all! 

[artistangie]

just wanted to say HI, im fairly new here myself... this is one great group of folks and you are in the right place to receive support

[Joe S.]

While I am glad that you found us, I do not like it than anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogren's – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read "Spoon Theory" on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Don't Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book "Feeling Good" by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think "I am" as you breathe out, think "calm". Repeat as needed. Meditation can be as good as sleep.

With Sjogren's we tend to have a lot of infections so wear your "polar fleece mumps scarf" to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three S's of Sjogrens.

[Gayle]

Hi

I understand. It took years... years and years for them to figure out what was wrong and now that they say SJS and I stop to think about it... yes, it all fits and makes stupid sense... Many of us do okay and learn how to deal with it enough to have a fairly normal life.. Not all are so terribly sick as you read. BUT these are the ones we will learn from, laugh with and cry with, there is so much love, compassion, understanding and care from the people on this site, you will find it such a blessing to have come here. I know my husband has no clue - even though he has seen me dealing with crap for so long. My best friend has not mentioned it once... it is all hard.. You too will develop abilities to deal and understand... I thought everyone around me was a moron or well, won't say what I really thought... until I came here and see it is like this for most everyone! I feel so.... normal(?) not sure that is a good description LOL. Yoga is good, meditation is good, treat yourself well, rest, you will be fine!
Gentle hugs,
Gayle

[mnslewis]

Hi Mustang
Im fairly new too and I can tell you this site is wonderful help!!!
I too felt all alone in this...I have always had the "but you dont look sick" comments.
The worst is the but you did that yesterday, why cant you do it today??
We have to vent, we have to cry....we also have to laugh and live!
prayers for being well.
Samantha

[Carolina]

Hi and welcome Musstang4u,

If all your blood work comes up negative, did you get the diagnosis based on symptoms?

That's a good Rheumatologist who can make that connection.  So many require lots of positive lab tests.

This is a great place to learn and share.

Keep reading and posting.  Take what you need, leave the rest.

Each of us reacts differently, has different symptoms, and yet we have plenty in common and lots to share.

Keep us posted,

Hugs

and welcome again,

Elaine

[quilt4fun]

Welcome Musstang4u,
  There are days when, I believe, we all feel like whining a little! What a better place to do that than right here.  We all understand.
   I hope you have a good rheumy--some are very helpful and understanding and will work with you to find a medicine that will help relieve symptoms.
     There is an abundance of information available here.   Use the "search"  box or just ask away.
     The Lord is good, and will be there to help you get through each day.  I don't know how I would have handled my diagnosis without my faith in God to help me daily.
  Take care and pace yourself.
 
Jan

[Meld256]

Hi Musstang,

Welcome to the forum! 

I know a new diagnosis can be so confusing, and we can't help but wonder "what's going to happen to me now?"  We can also feel alone, partly because we may not meet anyone else with Sjogren's. 

You're not alone here.   There are many, many of us.  This is a caring, friendly place where you can come to ask questions, vent or whine (we like to say vent) but whining is certainly allowed and many times necessary, and share and encourage one another.  There is lots of understanding and no judgement.

Lynnmarie put it best in saying that it doesn't mean this diagnosis will stop what you want to do.  You may have good and worse days, but with management you can learn to live a fulfilling life in spite of it all.  Your faith will help you. 
Please feel free to look around since there is loads of information here.  And know that we understand and we care. 

Take care, and welcome again!
Melinda