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Thread: Been sick ready for my eternal home but God isn't listening to me!

  1. #11
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    I just wanted to say thank you to all of you who have replied to me cry! Along with taking two antibodics I am taking Nexium, (the purple heartburn pill that heals the damage along with stoping the acide production) compizine supository cause I can't keep things down, percocet for pain, and another drug for migraines it has a seditave, tylenol and caffine in it, and propanolol which is suppose to control my migraines but actually helps my blood presure.

    Some asked me if they did and lower scope not last week but I have had 13 of those done in the last 3 years. I have been tested for Celiacs negative at one time I was tested for Crohn's it came back possitive and now it is negative. I also have tested possitive for Ulcerative Colitis which comes back negative now.

    I don't do NSAIDS as I am allergic to them all, I have been tested for food allergies and they come back neg or normal. I do have H.Plori and GERD right now they think from a valve thats not working right. Other than that they don't know how to help me out I am sooooo frustrated. I see my surgeon tomorrow. So maybe he has answers ----- Debbi

  2. #12
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    Sounds like they are helping you, Debbi.. with the treatment of antibiotics and Nexium.

    I having had H.Pylori...when it does resolve your symptoms in your stomach will resolve too. Treatment helps to heal the ulcer, lowers the risk that the ulcer will return, and lowers the risk of bleeding from the ulcer...no coughing up blood.

    Stay with the treatment...sometimes some may need a second round of medication depending how much of the infection is in their stomach. To determine if the bacteria was radiated a breath or stool test is usually done after finishing the medication...

    The blood test was the diagnosing tool for me....I used the pill regime, the small suitcase of pills for 14 days. I then had an upper endoscopy which confirmed it was killed.

    I was having the upper scope done because my food was getting stuck...while in there he dilated my food tube...and did a biopsy to confirm the H. Pylori was gone..it was.

    I still have GERD because of the esophageal sphincter not seating properly. I can go without my Protonix for a spell...and when I feel a bit too much action, acid in my esophagus I resume the pills...so there is hope, there is help.....

    I know it is frustrating.

    Having suffered from rashes too, not getting a definite diagnose is hard too... I think having Lupus, it puts our system into overdrive and we can react to anything one week and the next none...

    I've been allergic to cosmetic ingredients..and then poof I am not...

    Boils...antibacterial soaps can help to prevent bacteria from building up on the skin. This can reduce the chance for the hair follicles to become infected and prevent the formation of boils.

    Have your doctors been lancing/draining your boils?

    I find the more I learn about my diseases, the symptoms I feel so much better. I believe in becoming an expert on your diseases so I can be a better advocate in my health...and not feel so beatened and frustrated when I don't know what they are doing, talking about... I feel I have no control over my body when I am left in the dark...

    Head hugs...
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

  3. #13
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    I wish I had a definiative diagnosis but I don't they are jsut guessing and stabbing and grasping at straws and i hate it. I hate the fact that I have to take all this medication and no one seems to know why it doesn't work right away. Maybe I am just being a whimp. ----- Debbi

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    Debbi, you're not a whimp at all...I been through it, we all been through it...so we understand your feelings. Hate the pill taking, hate the appointments, anger with the doctors....then regroup our emotions and have a go at it again....

    We have to...other wise we sink into the pit...

    It is a roller coaster ride getting a diagnose. Frustrating to say the least. I know the importance of having a diagnose...we feel secure in feeling we are on a path to wellness...

    Keep looking for your wellness....don't give up on you...
    LOve,
    Oluwa
    I have Lupus. So *^#@! what.

  5. #15
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    Hi Debbi,

    I agree with Oluwa; you arent' a wimp.

    You mentioned you take the purple pill. Does it work? I recently received some samples when I ran out of Omeprazole (generic for Prilosec) and Nexium didn't work for me. I am on 20m of Omeprazole in the am and prior to dinner in the evening. It's also cheaper with your insurance. I thought I would share it.

    I hope you get to feeling better. Sending hugs . .. . . .

    Take care & God Bless,

    Faith

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    Debbi, you are not a wimp! You've been dealing with constant pain for a long time and all you ask for is medical assistance that will ease your pain. Your frustration is understandable but I'm so happy to read that you're hanging in there and giving the doctors more time to find the answer. We sure do get tired of waiting sometimes, it seems like forever, but the body is so complicated that it's not always an easy fix. In the meantime, keep posting and let's go through this together. We understand you and what you're feeling.
    SLE, SJS, vasculitic neuropathy, Degenerative Disc Disease, Chronic Autoimmune Urticaria

    Plaquenil, Imuran

  7. #17
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    Omeprazole gives me really bad diahreah and cramping that doubles me over so I have tried that, pepid ac which works but again the big "D" aceaphex. rash, and "D". Nexium was the only drug that seemed to have not caused me more problelms then it was worth. I think the antibodics and nexium are kicking as I am not hurting as much in the stomach area now my lower bowels are another story and an on going symptom. I joined a Chronic Pain Anonymous group I can't spell but it helps to know that others feel the same as I do.

    Debbi

  8. #18
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    I am glad to hear that the anti-biotics and nexium are starting to help. It is frustrating, I know, to have to deal with so much pain and so many symptoms while our doctors scratch their heads and experiment with medications and treatments. It would be so nice to be able to get one definitive answer and a sure-fire treatment that works. However, unfortunately for us, this is not the world of Lupus.
    We all live in a world of unexplained symptoms that no one can trace, so everyone just says "It's your Lupus". That is not an answer, it is not a treatment, and it just infuriates us. But, it is, sadly, our world!
    Most of the time, a treatment is finally found (sometimes after experimenting and suffering for a good year or more) that starts to eliminate some symptoms and lessen others. But, it is the suffering that we must deal with in the meantime that makes us want to give up.
    We are all here for each other because I think that almost ALL OF US have been to that point, so we truly understand how you feel. We've been there and somehow, we weathered the storm and are here to offer you our open arms of understanding. We all do this knowing that, more than likely, there is another storm waiting for us around the corner (or even that we are, ourselves, in the midst of a terrible storm right now). But, only we understand one another, so we are here to support you and to give you comfort and to hope that you will soon weather this storm and continue to improve.
    You Are Not Alone

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Hi Red Haired Angel and Saysusie,

    I would highly suggest checking out a book written by Maureen Pratt called "Peace in the Storm." She has Lupus and a very strong faith in God while offering suggestions on coping. It is really an awesome and inspiring book.

    God Bless,

    Faith

  10. #20
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    I had a very very bad week the antibodics and nexium started to work but the side effects of that dreaded "D", and vomiting over took me and as much as I tried to keep things at bay I still ended up passing out from dehydration and ended up in the ER yet again. This time they gave to bags of fluids and an IV that contained antibiodics so I don't need to do the pills anymore.

    Today what my doc calls my Lupus rash and joint pain is to the breaking point. I am almost in tears typing this cause i hurt so much and there is nothing I can do or take to stop the pain. The rash is just taking over. I look like a freak. I know God is in control but why isn't HE helping me. I guess I whine to much so I will try more possitive thinking after all it is friday and half my day is gone already that is something to be thankful for in itself.

    I hope you all get a SUN/SON filled long spring weekend to enjoy pain free!

    God Bless
    Debbi

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