So I experienced something recently that I've been feeling extremely guilty for. On a weekend trip with the family at a cabin by the lake, there were enough beds to accommodate everyone. However, a couple of the rooms were in the basement where the temperature was really cold. Being one of the first to get there, my husband chose one of those rooms for us for the privacy. I was very hesitant about it. One, because cold temperatures makes my bones ache and two, I have a tendency to feel sick like I having a head cold or worse, the flu. We ended up working it out that we would stay in one of the basement rooms and were going to use the one heater. The first night went exceptionally well. We were both very comfortable in our room. Well, the next day, all the others were arriving and when rooms were brought up, I was told an older member of the family may have to sleep in the basement also...in the room next to ours. Uh oh...was I expected to give up the heater? My heart wanted to say "yes" but my brain, well, that's another story. Do I give up the heater (there was only one) and suffer for the next few days or not say anything and just keep the heater and be able to continue to function? A whirlwind of Pros and Cons were running through my head. 

This may seem like I'm completely over thinking things but you see, in my Lupie mind, I think of what things I have to do in the next few days that I have to be really mentally alert and physically able for. Come Monday, it's work. Things there are pretty crazy with layoffs and and more increased workloads. Also, I'm in the middle of selling my old condo. Any day now my condo could close & I still have to clean it up for the buyers before they move in. Then there's the weekend after where we had already planned a BBQ for an aunt that's here to visit from another country. My house has to be cleaned and grocery shopping needs to be done. It may not sound like much to do for a healthy person but to someone with lupus, it can be. So, do I risk letting go of that heater? 

End result, I couldn't...and I feel extremely guilty about it. 

I struggle with this a lot. And a lot of times I don't even have the energy to explain the thoughts that go through my head to anyone regarding my actions. For me personally, sometimes I don't think some people would understand. (There has been a time or two in the past where I have gotten criticized or given a funny look when I have tried to explain.) I also feel that I've had this illness for a long time and people are tired of me always blaming everything on my lupus. Shoot, I even get tired of it. 

So am I right to feel guilty for making this decision?

Is this a form of being selfish and high maintenance or being responsible for my own health? 

I still can't decide...
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It's been quite a few weeks since I posted last. I just started 11mg two days ago. Since my last post, I have seen my Rheumatologist and my Nephrologist. I informed my Rheumy about what has taken place since I last saw him a few months ago and how I was currently in the process of weaning off my steroids. He thought I was doing things properly by weaning off every 2 weeks but also suggested weaning off every 3 weeks instead if I start to feel increased effects of the weaning off process. I took his advice and decided to wean off every 3 weeks. Of course, I informed my Nephrologist also that this is what I was doing. He was on board with it as well.

The good news from both appointments was that the cocktail mix of Cellcept and Prednisone has worked really well for me and my kidneys are functioning at a normal level!! My serum creatinine levels were at 0.84 mg/dl. (The normal range for women for this is 0.5 to 1.0 mg/dl. For men, it is 0.7 mg/dl to 1.2 mg/dl.) 

As of today, after weaning down to 11mg of Prednisone, my joints have only been slightly achy and I'm just a little bit tired. This is nothing like how I was feeling when I would stay at a certain dose for only a week or two. I'm still getting brain fog though. Sometimes I think it could also be caused by the nice weather too...haha! 


My little puppy (though not that little anymore...from 3 lbs at 7 weeks old to 10.5 lbs at 5 months old) has been a lot easier to take care of.  




She has gotten the hang of potty training and is barking at the door to let us know when she needs to go out. During the times she has too much energy for me, I take her to doggy daycare while I am at work to play with other dogs/puppies. Because of the cost, I only am able to do once every couple of weeks though but every little thing helps! 

I can't even express how happy I am that the medications have worked for me. I haven't felt this "normal" in such a long time. 
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