KarateMom's Journal

Somewhat better today but not as good as the day before yesterday.  I think I felt better before I took my bath.  Usually soaking in a tub of hot water helps get rid of the aches and pains to a degree but this morning it seems to have made me feel worse.  I am wondering if very hot baths could be considered a form of stress on my body.  I'm not sure but it does raise your heart rate etc.

I took the 60mg dosage and I am waiting to see how well it works.  I really need to be ok today.

This past summer I started a candle business.  I do bakery candles that look like food and drinks along with jar candles and the melts that go in tart warmers.  At the time I was in what used to qualify as a "good" period.  I thought that the doctors' advice was finally working.  Believing I would never be able to work away from home due to my health issues starting my own business made sense.  Then I started flaring and what seemed like a good idea turned into a major struggle.  Not knowing about the lupus I had no idea how to improve the situation.

Due to health issues I have not made enought to justify dropping the social security disability payments as yet but I have high hopes that with proper medication I will make a good living and regain control of my life.  (Disability payments are a God send but they are also a trap in a way because it is so demoralising to be on them and you almost don't dare try to get off them unless you are sure you will stay well.)  I think I will be better off continuing with the candle business and working on our farm than trying to resume office work.  The last job I had was as an office manager at a university and it was just too stressful.  Better to just have myself to babysit if stress is going to cause flares.

The thing is I have a show tonight.  I managed the one last Friday but found myself in bed for days after.  This is the Christmas selling season and I need a good show to carry me for the next few months.  I could let my sons and husband do the show but they really need me there.  This is a really big local event with people in Victorian costumes and tons of publicity.  Tonight is even the night of the Christmas parade so this will be the biggest event as the parade route is through the show.  I really need to be there but 6 hours on my feet, in the cold with packing the unsold items up afterwards is not going to be easy the way I am feeling.  Last week I had to stay in a chair most of the show and I think it hurt sales as I had a harder time talking to customers due to being below eye level.  I need this to go well but all I want to do is stay in bed and complain about the itching.  Thank God the show is an evening event so it will not mess with the photosensitivity.

Well that is it for my day other than the need to pick up the 24 hour urine test and talk to the doctor about keeping my dosage at 60mg or possibly going to 80mg.

Today's symptoms: Legs itch with some pins and needles sensation but it no longer feels like I have ants biting me all over, bad pain in my lower to mid left side it is steady and stays in one spot, some lupus fog but I am fairly coherent, tired now due to the bath but I woke up feeling refreshed and strong, also some muscle weakness as a result of the bath, dull headache, developing raw spots on the roof of my mouth and upper gums, slightly depressed and irritable, the malar rash is lighter now but still obvious.