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Post by dizzycooks on Jun 11, 2018 12:29:08 GMT -6
Dd3 has juvenile arthritis. She will likely end up on daily injected medications with monthly visits to a rhumetologist and we will find a combination that works for her. She will be able to be active, but there are many things like soccer and gymnastics that are likely out of the picture for her. At ds well check today their doctor asked me if I was ok with this diagnosis. I know she meant well, but how can I not be ok with it? Do I get a choice? No, I’m not ok with it. I’m needle phobic and I’ll need to give her shots. She loves running and playing hard and she isn’t going to be able to. No, I’m not ok. I will be. I have to be. It’s not like we get a choice and THANK GOD it’s “only” an auto immune disease and it’s not terminal. But, no first I will need to grieve what I thought would be and then we will move forward and we will both be fine. Thanks for listening and TIA for your prayers and support.
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Post by Deleted on Jun 11, 2018 18:53:05 GMT -6
I will be thinking of you guys as you learn to navigate this together.
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Post by scorpioscuba on Jun 12, 2018 9:14:17 GMT -6
Oh man dizzycooks I’m so sorry. 😪 what a thing for your dr to say. You need time to grieve and adjust to your new normal and honestly, the grieving will always be there. My nephew has type 1 diabetes so it’s something that is always there. He was diagnosed at 3 and is now 11. Sure he can do many many things but there are lots of frustrations too. And sometimes it just fucking sucks. And it’s ok to rail and get mad at the world once in awhile. Big hugs to you. Come here to vent whenever you need. We are always here to listen.
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Post by tinydancer on Jun 12, 2018 10:45:29 GMT -6
I'm so sorry dizzycooks, that's a lot to absorb and you absolutely need time to come to terms with it. I don't know anything about juvenille arthritis - will she grow out of it eventually or is it a lifelong condition? I'll be thinking of you as you work through this.
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kcrkcs
Silver
Posts: 347 Likes: 784
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Post by kcrkcs on Jun 16, 2018 20:35:49 GMT -6
Oy that is a lot to take in. You will get through it and your DD will still have a wonderful fulfilling life. But it's ok to mourn what you thought was going to be. I hope you can get her on the best management program smoothly and quickly. So many hugs to all of you.
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Post by nellieoleson on Jun 18, 2018 22:42:11 GMT -6
I’m glad you finally have some answers, but I’m so sorry your dd3 has to go through this. I will be keeping my fingers crossed that she responds well to her treatment and can be as pain-free as possible.
I saw in the other thread that you were in need of some self care — and while I know it’s not easy to find the time, don’t forget to take care of yourself. I remember this time last year we were dealing with dd1’s scary health issues and it was SO draining. I know you’ll take good care of dd3, but take good care of you, too, okay? Big hugs 💕
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Post by theoprah on Jun 27, 2018 5:18:38 GMT -6
dizzycooks - my heart broke when I read this. It made me think of grief - because I would be grieving the loss of a “typical” childhood and life for my little one. I am sending you lots of hugs Mama! I have a friend who lives with chronic pain and she kicks butt and takes names every day. You would never know it if you met her. But still -it’s a lot. After my two mc’s this year I read a great book about grief called Option B by Sheryl Sandberg. She advises that we “lean into the suck” and allow ourselves to feel all the bad feelings. It’s helped me tremendously. Science is amazing though-it’s not crazy to think that arthritis could be cured in DD3’s lifetime. There’s just so much to unpack here. You probably feel out of it because of tidal waves of emotions-and that’s ok!!!
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Post by crimsonandclover on Jul 1, 2018 11:18:45 GMT -6
dizzycooks, I'm just reading this now. To me it seems completely normal to need a bit to come to terms with the diagnosis - like others have said, to adjust your mindset from how you imagined things would be to how they will be. I'll be thinking of you guys.
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