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Thread: New Life New Prayers

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    Default New Life New Prayers

    Hi! My name is Adrienne and I was diagnosed with SLE Sept 2007.... I've been struggling every since.. I hate the medicine, I dread the vomiting... I feel so unattractive. I'm just scared... I'm glad I found this support group.

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    Hi Adrienne,

    Let me take this time to welcome you to the forum. I was diagnosed last September, also. It is the pits. I don't like how the meds make me feel, either. I have been told that it takes time to get used to the meds.

    What do you take? I have had my appearance change drastically.

    This forum does help. It is nice to talk to others.

    I look forward to getting to know you.

    Karen
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

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    Thanks for the reply. I am taking methtextrate and prednisone. I have to have a kidney biospy on the 10th due to the amount of protien in urine... I was up all night due to vomiting. I am on other medications but I am at work right now and I have so much brain fog I don't have a clue what the name of the other medications are. I am so scared. I use to have beautiful skin, beautiful nails, beautiful hair, I use to love to dance, joke, play, drink, run, and just live... But now... I am know as the "sick girl". I try so hard to live my life but if I do to much, I am sick for 3 days to make up for one day of fun... People at work look at me and stare... They tell me when I am having a bad day... I was teacher of the year for my school district. But know I tend to forget my daily routines and words to say... I am always sick. My kids are so concerned that they told me they were going to find a cure for me. I am so scared.

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    Hi AdrienneBrown :lol:
    Welcome to our family where everyone understands your fear. Lupus is a chronic disease, but it is not, necessarily, a life threatening disease. There are many people who have lived 20+ years with Lupus and who have been able to manage their disease and live a relatively normal lifestyle.
    Your disease is, apparently, active right now and may remain so for a while. However, with medication and lifestyle changes, you may be able to get your symptoms under control. This could take a while, but it is entirely possible.
    The entire purpose of treatment for Lupus is to reduce the symptoms of active disease and to hopefully prevent further activation of the disease. It is the dream, of Lupus patients, to eventually achieve remission. In order to hopefully get to that place, you must be willing to make the appropriate lifestyle changes in order to help your body, and your medications, get your symptoms under control. All of this takes time.
    Unfortunately, many of our medications (such as Methotrexate) have unpleasant side effects (like the nausea that you are experiencing). Sometimes, Methotrexate can be given intravenously. Some patients find that they can tolerate it better this way. Also, there are alternatives to Methotrexate if you find that you just are not able to continue to take it. Some of those alternatives include: azathioprine or leflunomide. I am not saying that these alternatives do not have side effects, because they do. It is just a matter of which drug you can tolerate the best.
    Your fear, as I mentioned, is totally understandable and we all have felt that fear at some point in our disease. Please try not to let your fear lead to undue stress. Stress is our WORST enemy! Stress can aggravate our symptoms, making them worse; stress can bring on a flare-up and make that flare-up worse or last longer; stress makes it more difficult for our medications to work and stress makes it much easier for us to develop new symptoms. Do all that you can to lessen and/or avoid stress.
    Part of what you can do is come here to us and unload all of your fears, frustrations, anxieties and anger. We are here to help you navigate through this disease and we will do that for you in any way that we can. If you have any questions, need information or just want to talk, we are here!

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

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    Hey Adrienne,

    I do understand the fear. It seemed that I fell apart when the diagnosis came. My hubby wanted to know what had changed if I had it for years. I am not sure unless the flare I was in was worse than the rest.

    Like Saysusie says, stress is one of the worse things for us. As a teacher with deadlines and dealing with parents that can be very laughable I know. I actually laughed at my rheumy when he told me to stay away from stress. I have many kids, most of whom are in teens and young adult. When dealing with kids it is hard to live a stressfree life....sigh...

    Prednisone made me so sick...It also made me feel almost no pain...

    Prednisone I can't live with it , can't live without it. :|

    I do hope your fear abates some as you get used to the meds.

    Karen
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

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    Welcome Adrienne

    Glad you found this site. Saysusie is a blessing with her forum and information. She's made a nice little home for us to share with and comfort one another. I have no experience with the medications your on. What does your doctor say about them making you sick? I'm just wondering if there is a timing or method of taking them that could lessen the effects. The plaquenil I take messes me up if I dont take it just right. Which is both pills right before bed with the right amount of food.

    If I take it wrong I'm throwing up with diahrea and virtigo. If I get it right, then I'm perfectly fine the next day.

    I know those medications are alot stronger than the plaquenil, but perhaps you can lessen the effects to a tollerable level.
    Oh look ... a cookie

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    Default Welcome Adrienne

    I am sorry you are having such a difficult time with the meds. I have not experienced the meds you are taking, but I think it is safe to say we all understand this difficult journey. Saysusie is a wealth of information and comfort, as is everyone on this forum. Stick with us through your difficult times so that you can share some laughter with us when you are feeling up to it.

    I will keep you in my thoughts and prayers.

    Jana
    Life is measured not by the breaths we take, but by the moments that take our breath away.

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    Hi Adrienne,

    Welcome to our family of support. You will find sympathy, empathy, concern, and it's nice to bounce problems or ideas off of someone who has been there.

    Welcome again.

    Faith 8)

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    Welcome Adrienne,

    Many of us have been where you are right now and we pulled through, so there is light at the end of the tunnel, just keep on pushing to get there. Yes, there may be change life alterations but there is still life and it can still be joyful, just in other ways. Coming to this forum can be one of them. This is a great group of people, that I call my cyber family and they will give you laughs along with support while providing knowledge, and understanding with a side of empathy- Now who can pass that up :roll:

    Again, welcome and hang around

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    Adrienne,

    I am glad you found us too...we are all scared to some degree. Some of us all the time, some of us, sometime. I fall in the middle. Scared to live, scared to die. I find Christian praying, Buddhism chanting and beliefs help me to be not so scared. And coming here and talking with everyone, about hopes, dreams, anger, frustration, home, spouses, children...helps a bunch.

    It takes time but you will find a prescription regime that works...you may have to add, or omit as time goes on, but your body adapts. How are meds making you feel physically or is it mentally? How long has the vomiting been going on? Had you spoken to your doctor about the side effects?

    Are you feeling unattractive because being sick, the medicine, weight gain. We can all relate to that. Maybe a new do..a few new outfits can perk one and takes us away from focusing on our looks too much.

    I know what you mean..one day of fun, 3 days to be abused by IT. I know that routine well. I learned my lesson. I listen to my body..and not drain the life out of me in one day thought. The intense day of work, of fun is not worth what follows...pace yourself. Find your limit line...

    Make a list of what you want to do today, then cut it in half and that ought to be just right...said Goldielocks...

    I live in SC too, near Charleston.

    You get an Oluwa head hug...squeeze...it'll be alright Adrienne...talk to us..okay..

    Oluwa

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