I think this is a great article that was shared on Facebook.
Thanks Nichole!
I think that sometimes depression is confused with grief, though surely they are related!
Yeah, I would assume they go hand in hand…I never thought of it as grieving because of a loss, but it did hit home when I read it.
I like this article, Nichole! Thanks for posting!
When I was first diagnosed, I began seeing a counselor to help me deal with my fears and anger so that I could give my husband a little bit of a breather! 4 years later, I still see her because I constantly struggle with the 3 points mentioned in the article.
Sometimes just knowing that you're not alone is the biggest relief. That is also one thing that joining BF did for me - when I first joined, there were like, 40 Myositis members and I could not believe that there were 40 of us all here together. It was such an amazing feeling :-)
Love you guys!
One other thing I wish they knew,just because you don’t see the ravages of the disease on the outside all of the time, please understand until you’ve lived inside my body,don’t judge my pain, my weaknesses, or my inability to accomplish the things I used to be able to do.
I think I may get back to seeing a counselor. Even though my husband's great, they can only take so much, and I put a lot on him. I don't put it on my friends because they really can't take it. Just when I think I have a "Best friend" and we call each other that, when it comes down to it, she doesn't really get the disease. I can't talk to her like I would all of you. And that's not her fault, but it's still hard.
I love that I can come here and talk to people who really get it!
<3
Maren Holzinger said:
I like this article, Nichole! Thanks for posting!
When I was first diagnosed, I began seeing a counselor to help me deal with my fears and anger so that I could give my husband a little bit of a breather! 4 years later, I still see her because I constantly struggle with the 3 points mentioned in the article.
Sometimes just knowing that you're not alone is the biggest relief. That is also one thing that joining BF did for me - when I first joined, there were like, 40 Myositis members and I could not believe that there were 40 of us all here together. It was such an amazing feeling :-)Love you guys!
You're right Wendy. Until they've lived it, they can't judge you. Invisible illness is tough. I have an acquaintance who was recently diagnosed with MS. I know this is a horrible thing to say, but a small part of me for half a millisecond was jealous. Not that I would ever want MS, but it's hard to have a disease that many people, including some medical professionals have never heard of. I feel like I'm making it up when I try to explain it to people.
wendy krauss said:
One other thing I wish they knew,just because you don't see the ravages of the disease on the outside all of the time, please understand until you've lived inside my body,don't judge my pain, my weaknesses, or my inability to accomplish the things I used to be able to do.
I totally agree nicole. My husband and I split right in the middle of all of my health crisis, I’m sure he thought I was faking it. Even tho we divorced he never really “left”. He’s still hanging around, not sure why. But he did and even tho we don’t have a marital relationship, he rarely leaves my side. We recently relocated to Florida (his parents are here, they are elderly and have no idea we’re divorced) to be close to them. We are buying new things for our home, he keeps saying to me" whatever you want" we’ll do. I would never take advantage of him or our situation, but it’s nice to be treated this good, and even tho he doesn’t understand this disease, (guess nobody really does). He’s right here. He doesn’t ask a lot of questions but I usually tell him my numbers and keep him updated on drs comments. But it’s hard to not be able to give my kids or him anything specific like you can with most illnesses. I’ve never gotten counseling, maybe I should, but I deal the best I can, try to answer questions from my kids or him and live my life. I have good days and bad. It helps so much to have this site, to know I’m not the only person with this crazy disease, and to have folks who understand as much as anyone does. Thank you thank you thank you. For listening, for advise and for being a sounding board.
That’s amazing Wendy, that you guys can still get along like that. I’m glad he listens and you can talk to him about what the Doctors say. It’s sad that you guys split up in the middle of everything though. I figured when I was at my emotional worse with prednisone that my husband and I would be done but somehow we made it. I have no idea how. Especially since we’ve split up before we were married a few times.
Thanks for being a part of this group. You help make it what it is and are one of the people I know I can vent to also! We have our online therapy sessions here 
Have a great 4th!!
Yes we do have our online therapy sessions. And I feel compelled to thank you yet again for listening. It does help on so many levels. I know bout those prednisone crazies too. I have been off and on for many years do to asthma and poss churg Strauss. My kids have lived thru it, my mom, my x husband. Mom died in 2005 from small cell lung cancer, before she passed she bought this awesome motorized cart, I asked her why she was buying her cart, she told me, I’m taking care of you and making sure you have all that you need when I’m gone and no longer here to take care of you. It made me cry, because she always knew about my health struggles, and yet she was looking out for me instead of thinking bout herself even as she was dying.
Wendy it's easy to see where you get your warm ways and good humor through all of this illness, from your mom, of course!
Take good care of yourself!
Nichole, I hope you're getting some relief! Sending good thoughts your way!