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Thread: Really need advise

  1. #11
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    Oh I so understand what you are talking about! My daughter is gone for the week and I woke up this morning at the normal time and the trip to the restroom seemed like the end of a 10 mile run! I decided just to crawl back in bed (which I did) and I didn't pull myself out until right now.

    As for the milk... LOL. I went for a week without milk because I kept forgetting to get it when I went to the store OR I forgot I needed it until I pulled back into the house. If it is not written on the white board in the kitchen/dining area it is not going to happen. Yes, I am a grown woman who worked with attorneys for years and I can no longer remember to buy milk.

    I am not in denial anymore but I do find myself in tears or mad depending on the day. Gotta love this disease! The good news is that we all get to go through it together!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

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    I did make it to the store to get Sunday papers and milk. The denial was something I thought I was doing well with this year has been hard and filled with denial in my family. My grandfather die last spring and my mom is in denial that he gone she still refers to him like he is still here which is heart breaking. Than this fall my sister was diagnose with epilepsy which my mother has and she was in denial about it. The really weird thing of all these events I have handled it the best out of the three of us which I'm usually the emotional one who doesn't cope well. Yet up till yesterday I took in stride. When I commented to my sister about it she said yeah the last year has sucked but at least you got a baby out of it. So I asked if being diagnosed with epilepsy would be easier with a newborn she looked at me and agreed. Do not take that wrong I would not change a thing Jillian is such a blessing. Had I not got pregnant with her I think I still wouldn't have the lupus diagnoses and no matter how I feel even on the worst days holding her or my other two daughters makes me feel better. I really don't want to sound like Debbie downer I'm really blessed my husband is really understanding and has a decent job so that I can work for my father a couple hours a week I don't think I could go back to working 40 hours a week on my feet again. I have three beautiful daughters Megan, Chloe, and Jillian. My parents are great they are a great support and try to keep my 5 & 7 year olds on the weekend to give me time to rest. Thanks a agin for the understanding and extra support
    chrissy

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    Never feel like discussing your feelings is being a "debbie downer". That is what we are here for. I doubt there is any person here that hasn't had a time feeling exactly like you are feeling now. Vent away!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

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    Flower, it sounds like you're in a flare and you should see your Rheumy like the others have said. The meds can help prevent you from getting worse so even if you think you can handle it you really shouldn't try to. Just because you're blessed doesn't mean you can't complain or be treated for your disease. It's noble that you are grateful but also be kind to yourself and don't accept the yoyo effect from your doctors. I'm glad you're here with us.

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    Well I called the rheumy and made an appointment glad some one had just canceled or instead of going on Thursday I would have to wait for a month to a month and a half to get in which really frustrates me. If anyone knows a good rheumy in central pennsylvania please let me know. I called my husband to vent and it seem we are both flaring we are such a pair. He has post traumatic stress syndrome he was in tears and couldn't take work today so he is headed home I think we are going to spend this after noon curled up watching moves. I told his I wish I could make home feel better and he said I know I wish I could take your pain away. So what a way to start the week. He sees the doctor tomorrow after noon hope fully they figue out what he needs this always worries me one for his health and the second is he can't take a crowd like the store on the week end if I'm not with him so I worry if I ever get sick were I can do the shopping what we will do. Let hope for a quit after noon. Thanks foe listening

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    Hello Chrissy,

    What i've been reading since you started your post, your on a total downer mate and dow ever worry because we're all there with you to give full support, as we all have our days of ups and downs.
    Well i am pleased you've listened to us and also your hubby who's so caring and booked yourself in for thursday to see a Rheumo and see what he's like when chatting with him and also giving you answer's because some member's have good rheumo's on here and other's don't and i'm one of them, i get more results from my dermatologist.
    Someone will let you know in due course of a good rheumo in pennsylvania.

    I am sorry your husbands ill also, so therefore you need to fight for one another and you both need each other's help and spending some time together helps to relax you both.

    Well i really hope your husbands appointment went fine for him and please update we all on your visit to the rheumo.

    I wish you both the very best of luck because you both seem to deserve it sticking together like you are and so close.

    ~Hugs Terri~ xxx

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    Terri thanks for the support I have been feeling better and so has my husband I will let you know how the appointment on April 27 th goes.

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    Hello Chrissy,

    Nice to hear your hubby's feeling better but how are you feeling lately, as i have my ups and downs and the quicker your appointment arrives the better because i do wish you the best of luck refering seeing someone finally as sjogrens disease can be a nightmare at times for making your energy level low.

    ~Hugs Terri~ xxx

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    I have been feeling better now that they have me on vit d, plaque nil, and prednisone I seem to be less sore,have a little more energy. The only bad thing is there seems to be some night that I can't sleep from what I have read that's from the prednisone and I only have Eight day of that left. So we will see how it goes when I done with that.

    Terri hope you are feeling well
    Christine

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  13. #20
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    If you are not already doing so try to take the steroids in the morning so it is as far away from sleep time as possible. If you end up going on steroids for a longer period of time you may have to get on some kind of sleeping pill. I actually went on one that works for sleep, depression, and fibromyalgia so it helped with the chronic pain as well.

    Lots to look forward to. eh? LOL
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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