Originally Posted by shilowmyangel
we where just told my dauther has it and i would really like to talk to you i need to talk to other people who are going through this the fear i feel is just to much to handle alone and to share ideas and stories i think would help to feel not so alone thank you
Hi, I had dermatomyositis at age 18 which isn't considered the adult form which occurs in 40 to 50 year olds more often. Actually I had no idea what I had was dermatomyositis until today I heard on the radio about a singer who had it, and I was like "That is what I had." So I looked it up on the internet, and now I've been reading all these post of parents with children who have it, and I feel for you. But I'm here to say it's going to be ok.
If anyone would like to call me and ask questions or anything, please just feel free to call me my name is Chris and my number is 919-607-1712. Really feel free to call anytime.
I know it is hard for a child to express how they feel so I'll explain my experience. I was a senior in high school when I got sick. I went to high school in Japan, and was on the varsity basketball team at my school so I was in really good shape. The first symptom I had was an itchy back. Me and a friend skipped school to watch the Super Bowl, and that morning driving my car, my back started to itch. So I put some calamine lotion on, and it helped a little but not really. So as the days went on the rash wasn't really going away, so I just dealt with it. Then one Saturday morning I woke up and my muscles were sore all over. It's the same sore feeling you get after lifting weights no different, except it never gets better you just get more sore. So my muscles were sore, but I just sucked it up, and kept playing basketball and going to school. Finally my muscless became so weak that one morning it took me 10 minutes to get out of bed. I am a pretty strong guy 6' tall and well built, and it took all my strength to roll over on my side. I would sit there and visualize my next move. Muster up the strength and throw my leg off the edge of the bed. My bedroom was upstairs so I slowly inched my way down stairs and told my dad I think something is wrong I could barely move. So that's when he drove me to the doctor. The doctor had no clue what was wrong with me, and he never figured it out, but he said it looked like my immune system was thinking my muscle protein was a virus(viruses are protiens) so it attacked the muscle as if ti was a virus. So basically he said we are going to shut your immune system off by overdosing it with steroids, and hopefully that will stop it from eating away all your muscles. So he prescribed my prednisone and slowly reduced the dosage over a few months. And finally it went away. The whole thing lasted about 4 or 5 months. I am 24 years old now and have never had a problem with it since.
Now the prednisone helped my symptoms, but that is not what got me through it. This is my personal advice, and I'm sure many people will not agree with this tactic. But I know for a fact that above all what helped me recover so fast and so quickly was my father. Now my dad and mom are both United States Marines so they are a tough bunch. Plain and simple they had no sympothy. Now later on they told me they were scared to death, and afraid I was going to die, and distraught like any other parent would be. But they never showed it because then I would had picked up on that negative energy and started feeling sorry for myself. My parents never helped me get out of bed, never helped me down or up the stairs never did anything. My dad would simply stay "Stop faking it boy!", and "You better dig down and grab ahold." Which basically means find the strength to get up no matter how bad it hurts. Don't get me wrong he wasn't a jerk about it. But simply he wouldn't let me give up he made me fight. When he came home from work I would be sitting in his recliner, and he would say "Get your *** outta my chair." I would reply "I can barely walk." simply he'd retort "Than you shoulda never sat there." Honestly he could care less I was sitting in his chair that wasn't the point. The point was I was sitting on my *** all day sick watching T.V and like in battle if you lay day when your injured you die. And this disease is a battle and you can't let your children lay down and let it beat them. Now I know boys are different from girls, and 18 year old is alot different from a 5 or 6 year old so obviously you can't use the same language and tactics. But you can provide the same motivation. You can feel sorry for them, and you will, but don't show it. But instill in them the motivation to keep going, and work past it. While I was sick I was out of school for months, but I was elected homecoming king somehow, and I really wanted to play in the homecoming basketball game because it was the last game of the season, and the last game of my high school career so I fought my way out of bed, showered walked down stairs drove to school, and that night played in the game. I scored only one basket and was the most awful game I ever played, I was slow clumsy, and basically just sucked. My muscles were on fire, and I thought I was gonna die, but I got that last game in. And if I didn't have my dad pushing me to not succumb to the disease I would have just watched my last year of high school pass me by. My senior year in highschool I was taking college calculus, college chemistry, and college physics, and college english so I had a tough schedule, and my teachers where like you've missed an entire quarter you'll never catch up. Well I wasn't about to repeat a year so I had them assign me all the months of back work, and I busted my but and taught myself the entire curriculum, as well as learned what they were teaching at the time, and passed with honor roll got into Virginia Tech and lived happily ever after.
So I tell you all that, and I know it sound like I'm praising myself but I don't mean to sound that way, the truth is my father pushed me, and I prayed and asked God for strength, and he gave me what I needed. And it was only by his grace that I recovered 100%. Now I know it's not fashionable to talk about God, but I really don't care. I'm just telling you that for me. I know that God afflicted me with the disease, and he cured me of the disease to teach me a valuable lesson. One that taught me the strength of belief. What He spoked to me was "I'll take you to the very edge of death, but I'll never forsake you. And there is no fear in dying if you know I am here." Now I'm not trying to tell you what God is trying to say to you or whatever. That's not my place, and I doubt God is trying to teach a 5 or 6 year old child something. But your child's sickness may be for your own growth. Don't believe that your child will be ok. Know he/she will be ok. Because they will. Even if they don't make a 100% percent recover they will be ok. And as long as you don't nurture their sadness, and weakness. They won't nurture it either.
Again I'm sure my views may be a little radical for some, but I've lived through what your children are living through and came out the other side unscathed. And I know how you feel. The uncertainty, the fear. I honestly thought I may die. Mainly because the doctor told me, "Be prepared you may die, because I have no idea what is going on with you." So I know while your "in" the bad times right now there is a bright future, and soon you'll be sitting back talking about "You remember how sick you got back in 06' 07'. Yea that was scary but look at you now."
One last thing about the symptoms. The fighting to get of bed, and walk and brush my teeth went on for months. I never had a wheel chair or crutches, and I don't recommend them. I just made due. And let me just say when your child complains of itching. LISTEN. Now don't baby them, but that itch is the most intense and agonizing itch I've ever felt. The only thing about having that disease that bothered me was that itch. I can take alot of pain, but that itch is pretty much unbearable. I can't even describe how agonizing it is to me it felt like I million fire ants were biting my back all at one, and the multiply that pain and itch, by a trillion. And the bad thing about it is the more you scratch the worse the itch gets, it's like if you scratch it it just intensifies. It's very hard to explain. It's really that bad. I tried calamine, and didn't work. And the doctor never prescribed me anything. So what I would do (and I don't recommend this unless your kid is tough as nails.) I would get in the shower and turn the water on to scorching hot just the hottest I can get it, and just burn my back or whatever other part itched, and that heat would sooth the itch. It would burn, and hurt but the pain canceled out the itch so it was worth it, because the itch is that bad. The water burned but didn't do any damage to my skin. But I know children's skin is much more sensitive so that may not work that well unless they are teenagers, and can handle a little pain. But it worked well for me. Now maybe a less drastic measure may work I dunno. I'm just telling you what worked for me. Because I was 18 and couldn't describe how bad that itch was, so I know a child must just be crying because they don't know what else to say. BUT don't nurture it, just try to find a solution calm, and cool. Don't let them see you panic or they will panic. So help them fight through it.
Sorry this is so long, but this is the internet, and chances are the person that find this post useful won't find this post for 3 years, so by them my number will probably be different, and I'm just trying to give as much advice as I can in one sitting.
Again feel free to call me if you have more questions or want some details about the sickness, or just need a friendly ear. I'll listen. Again my name is Chris and my number is 919-607-1712
One final final final note. What causes this?? I have no idea, but for me I remember two distinct events that happened to me right before I got the sick. In the same day, my girlfriends mother gave me some vegetable I never had before. This was in Japan so you probably won't run into it here, sorry I don't remeber the name but it was a green much like spinach. And the second thing I had an Iranian friend who had and Iranian tea house and hooka bar, and I had some tea there, and smoked a hooka with some Iranian tobacco. I'm not a smoker so I don't know if it was the tea, smoke, or vegetable, but I always believed one of those things was the culprit. In reality it could be anything.