Lupus

Sunday, October 16, 2011

My daily struggle my love of prednisone

Welcome to my lupus blog.  You will have to excuse my errors that I may have while writing, it is part of my lupus brain fog.  I struggle everyday with this disease that has made my life difficult.  I know there are a lot of people with this disease that are much sicker than I and for that, I feel like ingrate.  I do feel very lucky for many things in my life, I have a wonderful supportive husband, intelligent, healthy children, I love my house and most of my neighbors, my boys go to a wonderful school.  I have so many things to be thankful for, but one thing hangs over everything I do, my lupus disease.  I wish I could say that lupus does not define me but it makes every decision for me, because this disease has taken over my life and left me almost useless, I am unable to control my life, lupus dictates what I can do, how much I can do, where I go, how I feel.  I don't feel like me anymore I am Mrs. Lupus, it has taken so much from me.  I am practically bed ridden on those few good hours on a few good days, I can go out to eat, shop or socialize however I pay for doing these normal things.  I will get very ill, nausea, vomiting, body pounding and throbbing in pain, exhaustion.  Even speaking to a friend on the phone can leave me in agony.  Healthy people have no clue how much energy it takes for people like me to do things they would never think twice about and I am happy for them.  I get told that I look so healthy and have gotten some pretty harsh remarks from people that think sick has a different face than me.  I am what sick looks like because lupus hides with in me and it does show it's ugly face sometimes, if I allow people to see me with out make up, or if I could ever get off of steroids, I would get very thin.  Prednisone is a devil with a pretty face, it makes me feel so much better and quickly, it gave me the ability to walk again within hours of the first dose, but it stabbed me in the back.  It made me dependent on it, not in a drug addict way, in a way that my body needs it to help fight against the bully, lupus.  I hate that I love this drug, because as much as it helps my disease, it hurts me and laughs at me with it's evil ways.  It makes me gain weight, moody, get high cholesterol, and other things that could pop up at anytime.  I try to taper but it makes my lupus symptoms so much worse as if I did not feel sick enough.  It never fails every time I have a few good hours, on a few good days, I start to taper .5 mg and the fun begins.  People often ask what about other drugs, especially doctors other than my rheumy, I tell them I am on many other medications but prednisone was my night and shinning armor and rescued me from the big bad lupus monster.

5 comments:

  1. Prednisone is my knight in shining armor too. I am going through tests to find a diagnosis, so I can't touch it.
    I would love for a day of relief. To remind me what I'm fighting for.

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  2. I have a love hate relationship with those steroids. I love that it made me feel better. I hated how obese I got with them. I've been off them for 5 months now and the pains and aches, uggh! But happy with the weight dropping off. I'm tired all the time again, but afraid to get a blood test and the results being bad that I would have to resume steroids. Vicious cycle.

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  3. It seems so many of us can relate to the struggles and advantages of using prednisone. I cannot get off of it, I keep trying tapering .5mg but my fever goes up and I get too sick! I hate that we all have this same demon. I wish you both the best. Thank you for reading and commenting!

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  4. I can relate to every single thing you have just said. That is how it is to live with lupus. For me too....prednisone has been the medication that has been the answer for helping me feel better or get through some bad flares of Lupus. I have been on it since the year 2000. For me...too...my adrenal glands stopped working as the prednisone does all the work so the adrenals 'sleep'...I've slowly decreased the medication to where I am at now...an all time lowest dose for me. But that always can change overnight. The weight gain for me has been devastating. SO many people...have no idea I think...to why I look the way I do. I always was thin and fit...and I'm overweight now. A constant battle to be the person I used to be....and in the more recent years I've come to terms that this is how it is and accepting the circumstance. I don't like it, and I'm not going to stop trying to be active and try to lose weight, and always strive to be the healthiest I can be. I've been wanting to do my own blog...but just haven't gotten to it. That and SO so so much has gone on..and things Id like to talk about...I seriously don't know where to begin!! Maybe start with that day and whatever is on my mind and then work backwards even?? I still think I will one day just start it. I like to tell others who care enough to want to know how it is for me...about the spoon theory...it helps them to understand the pain or fatigue and sickness feelings... at least maybe a little.

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  5. Megs, I am so sorry for all that you have been through and are still dealing with. Lupus is a monster and makes so many decisions for us and takes so much away from us. Prednisone is my abusive boyfriend, it can give me the ability to walk again while giving me awful side effects. I understand about weight gain, I am lucky the highest dose I was ever on was 25mg but on that dose my face and body looked different. I actually looked back a year ago on pictures and my face was so different. It is hard enough to be sick but to have to think about loosing weight just adds insult to injury. You can start a blog today just write how you feel, and add to it when you feel up to it, it can be a health journal. My blog is usually information based but I also like to throw in a little a day in the life stuff too. Your story is important please tell it! I also have a facebook lupus page if you are interested it give up to date lupus info, research, support etc. I update it daily. Best wishes and gentle hugs. xoxo https://www.facebook.com/Mrs.lupus

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