Infusion set

My rhuematologist's office called yesterday and set up my first infusion of Rituxan for next week.  How very timely.  My hip joints are aching more and more.  I am scared on the one hand, but looking forward to this on the other.

Wondering if the end of a good thing is near.................  A little aching in my right shoulder, pressure on top of both shoulders, slight aching/catch from time to time in both hips over the weekend.  Last week I was bothered by springtime allergies and last night I broke out with a cold sore in my nose.  Many people who have Lupus suffer with frequent cold sores/fever blisters.  Fortunately I haven't been having them as frequently as I used to years ago.  I think the meds seem to help.  Just not feeling quite as good as I was.

Coasting

I am coasting along right now.  No extreme pain.  GOOD!  Can't seem to get past tiring so easily.  (it's always been like that.)  Last weekend was very busy and when I went back to work on Monday, I was just drained!  I enjoy having the family over for birthday celebrations, etc., but afterwards I am so very, very tired out.  I know that is a part of Lupus, but I'd like to do better with that.

Decision

After much discussion with my rhuematologist, whom I saw late Wednesday afternoon, we have decided to postpone the Rituxan for at least 3 weeks.  I told him about my organic diet and he said that 3% of patients with these sorts of diseases who change their diet show improvement.  But it is worth doing.  So we will wait awhile and see how I do in the next few weeks.  It is a little bit scary in that I dread a bad flare up that will simply shut me down.  I must be hopeful that I will stay well!!

Doctor's Appointment

I have an appointment to see my rhuematologist tomorrow afternoon.  I've been waiting to hear from his office regarding starting the Rituxan, but was told it can take a couple of weeks to get the insurance all squared away.  Tomorrow is three weeks so I hope to find out what is going on and what is taking so long.  I feel as though I am in the calm between storms.  You never know when you have a really bad flare and I savor the inbetween times!  A person with Lupus is never "pain free", but the milder aches and pains are a breeze compared to the intensity of flares!

A Breakthrough Drug

There hasn't been a new medication for Lupus in 50 years.  It was announced today on the morning national news that now we have one - Benlysta.  What wonderful news!  I had read about Benlysta in a Johns Hopkins Medical paper about two months ago.  It sounds very promising.  It is an injectable; not an infusion drug.  I'll have to mention it to my doctor and see what he knows.

Rolled Dumplings

Yesterday I made chicken and dumplings for my husband and son, but made them the way Tom likes them:  rolled thin.  Last time I made them I couldn't have rolled them if I had wanted to.  I was in too much pain and the best I could do was to drop them.  That's Matt's favorite!  Yesterday after rolling and rolling to make Tom's favorite, I had swollen hands the rest of the day and evening.  I suppose it was worth it because the food turned out wonderfully and the guys really enjoyed it.