So I went back to my doctor today as I was starting to feel worse and actually have more pain. He thinks that the dose of steroids I am on isn't enough and so he put me in to give more IV steroids. He "thinks" it will just be an over night thing but I know how that goes..... Last time it was over night it led to a two week stay...
So its been kind of a low day... it hit my brother really hard today for the first time realizing that my life is forever changed and that we way never know what the day may bring. I am just thankful that I have a really great doctor who listens to me and does his best to figure out what to do.
I can say that I know exactly how you are feeling. I was in a similar situation. My doctors kept giving me different medications to see what would really work best for me. I started to feel like I was their little guinea pig… Ask a lot of questions if you have to so you can have a better understanding on what they are doing to you. I can honestly say that I didn’t care what they was doing to me. I felt so out of it and alone. I really hope you feel better so you can be your normal self again. Have faith and stay strong.
Even though this is crap right now…we are here for you…here to support…listen…guide…pray to god and know he sees you as we do…standing by and supporting you with love and healing light…breath…breath…it is what it is…temporary. …ask for pain meds and sleep meds…rest is what will get you back…love you stay strong…keep talking…love donna
I know its frustrating with all the ups and downs that Lupus brings us. We never really remember what that "normal" feeling feels like anymore. We deal with pain, medication, and multiple doctors. I've had lupus for 15 years now. I was diagnosed at age 18. I understand where you are coming from about how life changes. I thought I had a plan but God had a different one. Now, I can say after all the chemotherapy, IV sterioids, cellcept, imuran, methotrexate, tons of steriods that eventhough I havent had an easy healthy life, I wake in the morning, yes to pain, but remember that pain you feel, it reminds you that your alive and I realize that there are people out in the world worse off than I am so I try to remember that. By far im not saying I dont have crap days bc i do but i look at it diferently now. Hope you feel better soon. and its great your doctor listens thats important!
Hi!, prayers go out to you!!! Smile. Strong , and thank goodness that your doctor helps !..Beverly L.