wow, that is pretty heartbreaking. your support network here may have to be sufficent...at least until your own group grows up hang in there

randy

So sorry for how your in-laws behaved, but that seems to be commonplace for people who don't understand PM/DM. In addition to not understanding what we experience, I often wonder if people think that they might "catch it", so they avoid too much contact with us.

Please hang in there, freelee, as things will get better--they always do. Remember that our self-worth isn't based on what we perceive others might be thinking of us. We have great value in the sight of God, and in the sight of more people than we realize. Besides, you have a grandson who needs you and will grow up to love you just as you are.

I don't know if this would help you, but recently I started taking a new supplement called Lauricidin, which is good for the immune system and is supposedly safe to take with any prescription meds. I have noticed improvements in my energy, stamina, and mental clarity. Feeling these improvements has really helped my mental outlook. I feel more equipped to face each day.

I will say a prayer for you to get back on your feet again. Keep us updated on how you are doing.

Im very sorry for you, but can understand your feelings. Ive been married for 15 years and have not ever really had a good relationship with my inlaws. They have not been much of grandparents to my 2 girls either. And they dont know about my condition. I could care less if they ever found out. They didnt want to be a part of our lives before now, and i really dont need the sympathy niceness. keep your head up and we are here for you.

I'm so sorry freelee it can be really hard dealing with the disease and then adding people who don't understand on top of it all... it's really hard. I've never thought either way about counseling before, but at one point my husband and i tried it and it was really life changing. it really helped my husband and i connect in a whole new way. additionally, it was really nice having someone to talk to about my disease who medically understood and could really listen and understand what i was talking about. it was unlike talking to anyone else. it made me feel like i mattered and what i was going through mattered and empowered me to deal with the people in my life that don't understand and don't seem to care to understand. it might be something for you to just try.

just know that we all care about you and are here for you. sending big hugs your way; those days that finally break us down can be so hard. you're definitely in my thoughts and prayers

hugs!
nicole

I am really sorry you are going through this. I could have wrote it myself. I don't feel depressed but I am certainly isolated and have lost many friends over having PM. I guess I'm not fun anymore (Just Kidding).

Are you on Prednisone? It can cause depression. If you are, I would talk to your doctor about it.

I have members of my family (even my Dad) that basically ignore me now. I try not to take it personal but I decided that many people can't handle health issues. Instead of being empathetic (not everyone is empathetic) they turn away. It could be their own fear but almost always, it has nothing to do with you. It isn't that they are afraid you are contagious but more that they think that you were so healthy and all of a sudden you weren't...and that could happen to them too. Us "sick" people demonstrate that you can get very sick (and disabled) under no fault of our own or anyone elses. I know for me, before PM, I figured the only time you have mobility issue is if you are born with it or get in an accident. It never dawned on me that I would wake up and in the matter of weeks, I couldn't get around very well.

So try not to internalize their reaction. Maybe they didn't mean to direct it at you but they were preoccupied with other thoughts. Try to surround yourself with people that are interested in understanding (like us) your disease and can offer support. Check your meds and see if they are contributing to your down mood. Look for ways to pick yourself up (for me, I found it it up to me because no one else will do it).

Hang in there and let us know what we can do to help you work through it.

OH and for everything I quit doing because it is too hard for me now, I try to find something else that is easier for me. Like I quit going out drinking and dancing with my old friends (who are long gone now) and joined a book club with new friends. I enjoy reading the books and can do it while resting. I am doing an activity that I can feel "normal" doing which makes me feel better.

I know this is hard on your morale but you have to realize and internalize the fact that while support may come from outside (our support group is the living proof of that), strength can only come from inside. You have to be nice to yourself. You don't have to be with people who ignore you; just keep the company of those who understand and love you (love is always preceded by understanding), most of all in trying times. I know there is strength in you because you have been through a lot and survived.
Hang in there.
Sending you my best vibes.

I so hear you...I so hear you..Like Lexisgirl... I could have written that myself. I truly know who my friends are after this, and I cherish them so much. Friends who I thought would be there for me or check up on me, have not and ones I thought never would, have. I sent thank you notes to them for Thanksgiving (my favorite holiday) to thank them for being there for me.

I also go to counseling and it is a great help to me. To have someone that really listens.

My faith is what keeps me strong...totally. I have special verses that I recite that I say daily one is "I can do all things through Christ who strengthens me" Phil 4:13

I heard a good quote "Let go of what you think life should be so you can experience the life you have" Look forward in life. Pat yourself on the back that you are strong!

Hang in there and let us know how you are doing :-)

Freelee,
Don't waste your time consuming negative energy from negative people. Our time is precious. So find time to really just LOVE yourself, because you deserve it!

Hugs

Yes, our diseases really make you see who are your true friends and who isn't...I've learned this on my journey.
It frustrates me too sometimes, while other times I can blow it off..
Unless you are in our bodies, you just don't get it. Don't beat yourself up about feeling the way you do because we all (I'm sure) feel this way at times.
I get depressed some days while others aren't so bad. Just another thing with this damn diseases huh? But we are all here for you love!

Oh, Sweetie, I know how you feel. I think most of us have been there and some still are there. My own family is in denial. I get calls from my Father fuelled with sarcasm. " We haven't moved you know." "Our phone number is the same, you know." "Why haven't you called your Mother?" When they were visiting me, they actually had the nerve to ask me to do their laundry!! Can you believe it? I could barely walk! That's why I don't call them often. It just brings me down. I let myself have a good cry now and then. I usually feel a little better afterward. You are allowed to feel bad, you know. You have a right to. As long as you also have moments of hope to go with it. With a new grandchild in your life, maybe you could take on a little project for him. Maybe learn to knit or crochet a blanket, or do some scrapbooking. I know it is harder some days than others. Some days I don't get out of bed until 2 in the afternoon. That's life. We need to rest to get better. Don't be too hard on yourself. You didn't ask for any of this. You can only deal with it one day at a time.
Know that we are all here for you. Anytime.
God Bless.

Hi there - I am a member of an autoimmune meetup group and they are having the following webinar on March 9 on how to discuss your condition with family members...may want to join. I'm been on one before that helped....

March 9th, 8PM Eastern Time

Talk About It: Communicating RA Symptoms and Information to Family, Friends and Others


==>> To sign up, visit www.RISEwebevent.com or call 1-877-474-8892.

BE INFORMED
Hear from a healthcare professional about the latest advances in RA treatment. You can even submit questions and get answers during the event.

BE INVOLVED
Get lifestyle advice from a health and wellness expert to help you complement your treatment and live well with RA.

BE INSPIRED
Listen to real stories from RISE Ambassadors people just like you who are ready to share the challenges and successes they've experienced with RA.

Don't miss this opportunity to improve the way you live with RA without leaving the comfort of your home.

I am so glad I am a part of this wonderful group. I really didn't think there were others out there that didn't have the support of their parents. And also who had parents that just decided to take our diseases personally and get offended when we don't call or do the things we used to when we were well.

We all have each other, and I am glad God has brought us together. It can be so hurtful when others ignore us or don't even care enough to check in. But then God always puts someone else in you life who cares, if we just allow them in.

I have 5 wonderfully caring women friends who check up on me quite often. What a blessing. And I have this group. Again, another blessing. And most importantly, I have wonderfully caring, supportive husband, son, and daughter who care and love me so much. And I love them with all my heart. Who could ask for anything more, really?

Like the others said, I don't believe that people are being uncaring on purpose, it's not about us, it's about them. And being around chronically ill people is just too much for some people to handle.

We'll just continue to lean on each other and support each other the best we can. Hugs to you Freelee. I hope today is a better day.

Suzanne

I'm sorry to hear how you have been treated. I just got married in November 2009, then I got diagnosed with DM in April. We have had a really tough go at it, my new family just doesn't get it. However I cannot believe all the fabulous support I got from friends and my own family. My advise is similar to others, and I have gone thru depression myself, not somewhere I want to visit again. Concentrate on the positive, be thankful for something each day, even if it's only that you got out of bed! Don't stress about the in-laws, not being involved with you is their loss!

Suzanne, You took the words right out of my mouth.