Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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brendacaytonwhite 09/24/2011

Every morning when I wake, I have a conversation with God. I know many consider it praying, but I prefer to think of it as a conversation. I am unable to get down on my knees, but I don't feel that is necessary. I feel that I can talk with Him no matter where I am, or what I am doing.

It would probably freak some people out as to what I talk to Him about and what I thank him for, but I am sure that most of us understand the need to thank Him for the little things, such as daily body functions, that so many take for granted.

Anyway, many times when I am talking with Him, I have uncontrollable crying, which if someone came into the room, they would think that I am sad, but it isn't always sadness. Today though I was sad. My heart was sad, because as a parent, who has always put my children first, I can't understand the behavior of my sons. Two of the three allow so much time to go by without calling me, even just to ask how I am feeling. I can't understand it. Is it a male thing? Whenever they do call, they always tell me that they love me, but their actions are speaking louder than their words.

I have given it over to God and I am stepping back and allowing Him to handle the situation. I know that they don't understand my illness, but that is no excuse and I don't accept it. I am so grateful for each day that I open my eyes and each day that I can smile, laugh, take a shower, cook my own meals and each and everything else that I can do and I am not going to let their lack of understanding my need to hear their voices cloud my day. I raised them better than that and I have no problem giving them my two cents worth.

Are any of you having this issue with your adult children? My daughter and middle son are able to understand what I am dealing with and are here for me daily. My middle son lives in Arizona and each morning texts me a message saying that he loves me and we chat online, but those other two I don't get.

angie1026 09/24/2011

Hi Brenda...I too like to talk with God. No matter what is happening, when I do that, I tend to feel a bit better about things. I also usually start crying (sometimes quite a bit) during our conversations. This may sound weird, but I SWEAR sometimes its almost as if I can literally feel arms around me and a calming, loving presence. Maybe thats why I feel better afterwards. :) So keep it up!

As far as your sons, it is very unfortunate that two of your sons are not as comapssionate & in communication as they should be. As many of you have read, I am dealing with that issue with my sister who I have always been very close to and have always been like a second mother too. Some people just cant put others first. They are either 1) too wrapped up in their own world to really care about what is happening ot others 2) just not understanding of what your illness does to you 3) cant deal with anything bad happening to anyone they love and so if they just ignore it maybe it will go away. Or maybe even a mixture of all of those!!

Just try to be thankful for your family that does support you and pray for your other sons. Just keep loving them for what they are and not what you would like them to be. You cant control their actions but you can control your reactions to them. I understand your frustration and I am only dealing with a sister and not my own children. I have wasted so many tears and so much frustration wishing my sister would be to me like I am to her but it just aint happening. My energy and resources are too limited right not to keep that up.

So keep talking go God, lean on those who are there for you and pray for those who arent. Hugs....Angie

brendacaytonwhite 09/24/2011

I know for certain that the problem with my sons is that they can't face me being ill. Especially with an illness that lasts for so long and that they can't understand. I was a single mom for the majority of their lives and took care of everything on my own without any form of support, while working demanding positions, many times in leadership roles and they were always mentioning how strong I was when I really was just doing what I had to do to provide for them and to survive. I know that it is hard for them to think of me as being less than what they expect, but I am human and I do need them to understand that I need to hear from them more often and to just offer me and their sister a little bit of encouragement. Most times I just want to hear their voices. I will always love them the same, but I am really tired of their behavior and am going to step back to see how long it takes for them to wake up and face reality. They have their own families so it isn't as if they are young and don't understand health issues.

deleted_user 09/24/2011

I am sorry for your difficulties with your children. I too pray often, or have a conversation with God. There is no doubt in my mind that he is real, and that He is there for me as well.
After my interesting experience in 2009 on Good Friday, my faith is stronger than ever.
God Bless.
tracy

eddiesgal 09/24/2011

Talking to God is what grounds me in life. It makes me realize that I'm never alone, and that even when there may be total chaos all around me, he provides me that calm that I need. Blessings, Kim

deleted_user 09/26/2011

It is scary when the strong one in your life is sick. Also, guys want to fix things. And we can't be fixed! Avoiding the issue isn't very nice, but when it is hard to deal with an issue, sometimes avoidance is a method of handling it. Hopefully your sons will come to a more mature understanding of the role they need to play in your life. Obviously I don't know your sons but I bet they love you and just feel inadequate and scared.

brendacaytonwhite 09/26/2011

dannycall, I am sure it is because they don't understand how I can be in this position and there isn't anything that they can do, but just to hear their voices, helps. They allow too much time between calls. I don't feel that I have limited time, but I know for certain that hearing their voices makes me feel better. I don't want them to do anything for me, but call to say hello, how are you and to offer their sister some emotional support if nothing else.

deleted_user 09/27/2011

I'm going to call my mom right after lunch. Thanks!

brendacaytonwhite 09/27/2011

Moms just love hearing their children's voices, no matter how old they are. We don't need anything, we don't want to interfere in your day to day life. We just want to hear that voice that makes us smile.

deleted_user 09/27/2011

I have the same issue with my Mom and brother. They do not reach out and my Mom doesn't discuss it or says she can't hear. So, I know the limitations and I seek support from God and my friends and this site. God has totally carried me through this and I praise him for everything - joy in spite of circumstances. I pray for my mother and brother, it has taken me a long time to get to this point. I would be mad, write in a journal, distance myself, bring it up, etc. Since my Mom and brother are alike - they probably are both in denial - but now I am at "forgive and forget". In fact, my brother and I are talking more regularly (not about me, but my Mom), but I know the limitations/expectations and continue to pray.
Love Hugs and Prayers :-)

trpt1 09/27/2011

Brenda, The nice thing about DM is even though our physical muscle is weakened, we get to strengthen our spiritual muscle! I would give your sons a break. I have found that only the person with DM understands the DM. Your boys do love you, but I am sure like most men they don't express the love the way you would wish. Try e-mail. My father when he was alive rarely said, "I love you," but I know he loved me very much by how he taught me The Word of God. Use those promises from the bible and take time to strengthen your relationship with the Lord so that expectations from any people are not important. Good Luck

brendacaytonwhite 09/27/2011

My older son texted me today regarding "supporting" his dream and not once asked how I was doing. He is so certain that he can heal me with exercise and protein and since I informed him in the beginning that it was going to take more than protein and exercise he has not mentioned my illness. He will be 40 years old in March and has been writing these business plans and not following thru for years, but wants to use my expertise to help him make money. I informed him that it is now my time, that I have given all that I can to him and that I have to follow my dreams and that I am letting God lead me. I am not angry at him, but I know that if I don't do what is best for me at this time, I may not be able to do it later. As to whether he loves me or not, that isn't the question. He is being selfish. I have put it all in the hands of God and I feel okay about it. I have always believed in tough love and see this as another form of tough love. We can forgive, as we should, but we don't have to accept certain behavior just because we are sick or because people don't understand our illness or because we are a parent. I didn't know anything about this illness before I was diagnosed 2 months ago, but I have been doing research online since them.

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