My levels were only 537, which were the lowest they have been so far since I got this yuchy thing. I had my first bought of depression last weekend, when my wife was impatient with me for not being able to open a box that contained dresses for my little 3 and 6 year old daughters. I started crying and couldnt stop, that sucked.

I am okay now, but like someone here said, you cant underestimate the power of this disease on your pysche.

Talk to you soon.

G'day!

My husband has IBM for almost five years that we are aware of. So knowing that, I feel I can speak from both sides of the fence. Long term treatment on a high dosage of prednisone or solumedrol wreak havoc on the emotions. My husband would fly off the handle and yell at me for the most mundane things that ordinarily before this dreaded disease, he wouldn't even had noticed yet alone had made a fuss about. One time after a solumedrol infusion, he didn't sleep for over 48 hrs. and had to take some tylenol PM to get to sleep.

My point I want to make to you was true for my husband when I was sick and is true for me now and it is this, It is difficult to watch the one you love deal with a difficult condition and feel so helpless about being able to help them. It not only frustrates the patient but also the caregiver.

Please try to talk to your wife about this. Both apologize to each other when needed and try to remember that the other person is dealing with frustration also. This has helped my husband and me find a way to continue to live with each other and this dreaded disease. Please, I hope I'm not sounding too preachy, I'm only trying to offer something that has worked for us.

I have always been a "sensitive guy". I cry at the drop of a hat, and all my friends at work laugh at me cause if they are talking about babies or families or anything Disney, I ball. I am not ashamed to be a ball baby. There, I said it.
"Hello, my name is David and I am a ball baby." LOL. You guys are right, and I am just making light of it. It is hard to understand for the family members. My daughters have a lot of sympathy, and it is always there. Isnt it amazing how unconditional the love of your children is? Now matter how bad the prednisone swings your mood. They of course arent teenagers yet.

You know the guy on the bus that wont start talking about himself? You guys just invited him into your HOME!!! [evil laugh goes here]

I am kind of stoned on perkoset right now, so I will come look at this later and make sure I didnt look too dumb.

Thank you and hugs to you all.

I really hope you get some help with your health soon. The drugs are nasty, nasty, but if they help just a little bit it is worth it.

Dave, kids are fun. To me that was the best profession in the world. I truly enjoyed being a mom, even if I was a sickly mom. So we're hoping for a close daughter-in-law someday and if they live close enough to us, I'm hoping for a close mother-in-law/daughter-in-law relationship so we can maybe do some shopping together or out to lunch once in a while and maybe someday we'll have beautiful grandchildren which I know I will truly enjoy.

You don't know me, but in a way we all know each other.

I would just like to say three things:

1) REAL men cry.

2) Myositis hurts like hell (yes, this is the preacher lady.)

3) You and your family make a handsome picture, and I hope you don't mind--I saved it in my "Friends" folder.

I enjoyed the picture.How lucky you are to have such beautiful little girls.You will be amazed at how perceptive children can be.My 12 year granddaughter senses how I feel quicker than anyone.We have to teach the adults.

I cry mostly at someone's insensitivity or ignorance of the disease.Doctors can be just as guilty.I found myself apologizing for things I could not do.That is nonsense!! Would they expect a paralyzed person to suddenly walk? People need to be educated to the limitations the disease causes and the pain involved.

Your honesty and speaking from the heart is very refreshing.We will truly enjoy hearing from you.

Don't be ashamed of tears. Real men do cry. If you read Kelly's post at #1057, I was near tears because I know him so well. He had never written from his heart as was in that post.

For the past two weeks I've had to wipe the tears away several times. Today, I had a computer problem. Kelly drove out of his way to make the installment of AOL's 6.0 when my AOL 5.0 died in trying to change email addresses.

I thanked Kelly for his note earlier on Wednesday morning and how it touched me, knowing how he expressed his feelings about our group, like everyone was part of his family, too.

Today, in my office, he told me that he felt like it was intended that he help make the website the best we could afford because he didn't know how much our group's problems just become multiplied time and time again; how so many depended on our site to be part of their lives. He said he felt he just had to help us, felt that it was almost a calling as part of his life at this time.

Tears began rolling down my cheeks and I was so choked up I could barely express my love and appreciation to him in behalf of our group. We've been friends for 5 years.

Kelly is 31 years old with a heart of pure gold, giving tireless hours, having more wisdom and such a pure attitude of helping others with his healthy body and brillient mind, than anyone twice his age.

Last week I asked if he would be an honorary pallbearer at my funeral and the tears started again. It seems like I cry more now.

On Easter Sunday, my teenage grandchildren were here, bringing the video of their UIL high school band competition, and the tears just flowed. (They and the band are in competition at Disney World in Orlando this weekend and part of next week, flying out Saturday morning.)

After Kelly left my home at 3:30 PM today, he still had 3 appointments covering over 400 miles before he can get home sometime after midnight. That is the kind of guy he is - a true marvel to all of us with Myositis.

So, David, don't be afraid of crying. If you are reducing Prednisone quickly, that might be part of the problem.

About you not opening the boxes of the girl's dresses, I had to wait until Kelly came today to open an ink cartridge carton because I couldn't with my weak fingers and hands.

Dave, if you find out that you can't do something you're asked to do, if you can't do it, just say so and don't worry about it. You wife is unaware of the inner perspectiveness we hold unsaid within us and that only compicates our problems.

I hope you are all doing well. I just wanted to drop a note to remind you all that if you have any problems with the board(s) you can drop Jim or Myself an e-mail and we will take care of it right away. My e-mail address is kmiller@WebmastersOfEastTexas.com and Jim's is JRKilpatrickMYO@aol.com.

I am so glad that everyone likes the new format of the website. If anyone has any suggestions for a survey question, feel free to e-mail that to Jim or Myself also.

Remember, we are all loved. God doesn't give us more than he knows we can handle and there's a reason for everything. (We just may not realize it yet.) Keep your head held high. When you feel depressed, log onto the board and share your feelings. We will do our best to make you feel better and to know you are not alone.

I hope everyone has a great day!

Thanks to you and Jim for your dedication and hard work.We don't always say it but we know your there.You and Jim are the wind beneath our rather broken wings.Your support is dearly needed and appreciated.