Well, the good news is that my heart seems to be OK but the bad news is that they have no idea how to get me off of the prednisone which I need to get off of. Whenever we try to taper the dose down the pain gets very severe and even right now I can hardly function as a mommy and a wife. I need to see my primary care doctor today who is going to speak with my lupus doctor to see where to go from here but I need something to help me function.
I can hardly take care of the kids and it makes me feel like such a failure. I had to have the babysitter come over yesterday to watch the kids and then friends are coming over today to help out with the kids but this is getting ridiculous. It has been 2 weeks and I'm feeling no better...I was but as the prednisone dosage drops I feel worse. L & R are having their basic needs met but things like haircuts, laundry, housework and extras are just falling by the wayside. They are both acting a bit crazy which I don't like at all but I am so tired and in so much pain that it is hard for me to even try to get the energy to discipline them. This is L's last summer before kindergarten and I was so excited to have an awesome summer and now I am just a sick mess. My husband and I are supposed to go away in less than 6 weeks just the two of us and right now I don't think I even have medical clearance to travel.
I know that I need to get out of my mental funk that I am in right now and in turn that will probably help me to feel better physically but without a light at the end of the tunnel then I'm just not sure how. The latest talk is to just help me with pain managment because the prednisone is destryoing my body and I am fine with that but something needs to be done in order for me to function at least 75% of the way. I just want to be the mommy, wife and friend that I know I can be without this stupid disease getting in my way!!!!
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Hey, I just came across your blog in my "moms with lupus" google search. I so hear you about the struggles of having lupus and trying to be a good mom and wife. I have two little kids--2 and 4--and was diagnosed with lupus a year ago. It is incredibly hard and even though it is great and important to have support, no one replaces mommy. I'm sure you are doing better than you think. Hopefully you can get your pain and discomfort more in control and then things will improve. I know it's small comfort to know you are not alone but it's true. Hang in there!
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