No end in sight yet

My most recent CT scan showed what I had feared, more changes in the sarcoid and a bacterial infection. I knew I had bronchitis, but had hoped it would resolve itself. Unfortunately, as the pulmonologist explained, the sarcoid traps the bacteria in the lungs so I can't get better without drugs, and normal antibiotics don't work.

So two things. First, I have to take these uber-strong antibiotics for 2 weeks to get the infection (we hope!). Second, I'm stuck on the steroids for longer because we can't start the new treatment if I have any infection at all in my body because the new drugs will severely shift my immune system and I could get very very ill and they won't event start to taper the steroids until I'm on the new treatment for at least 6 weeks.

I get so upset dealing with all of these delays and backsliding. I have to constantly remind myself that sarcoid is a chronic disease and, at least for me, it is not going to be a straight shot from illness to getting better. It has been and seems like it will continue to be fits and starts with some improvements but also lots of disappointments.

My husband and I had to have a frank talk about our vacation this year. For the past two years, largely because of the cancer and the sarcoid, we've done very low-key vacations, renting a house and spending the week basically resting as a family. This year, by husband and girls really wanted to do something big. As much as I'd love to go somewhere far away or exciting, I'm afraid. I worry that I'll have trouble with the new treatment, that I'll be too tired or sick to really participate, or that we'll go on a plane and I'll get really sick because my immune system will be so messed up. So, we've decided to stay close for one more year and that next year, when I'm in full remission, we'll go someplace really fun (hope, hope!).

I hate putting my life on hold, and the change to a close-by vacation isn't the end of the world in any sense, but if I've learned anything over the past couple of years, it's that you have to live your life the best you can with the hand you've got and enjoy the small things, because it can all change in a heartbeat.

Prednisone is still evil

After months of daily Prednisone, my doctors agreed that it is probably not working for me. Anything less than 50mg a day and symptoms get worse. The problem is that at these doses, the side effects are just stupid. Between the heart thing, a couple bouts of bronchitis, massive bruises on my legs and general 'roid craziness, I think I'm ready to be done with this stuff.

But, before I can move on to the next try, which will be TNF drugs that are usually used for Rheumatoid Arthritis, we need more tests.

The first one was a bone density scan. I had one a year ago when we first tried the Prednisone and at that time it was fine. This one, not so much. My bone denisty has decreased enough that they call it "significant" and diagnose me as "osteopenic" which can lead up to osteoporosis. The solution? more drugs! At my next appointment we'll discuss what kind of bone-building medication to start and what kind of super-calcium/vitamin D supplement I need to go on. The other recommendation is regular exercise, which is not an issue, since I'm already doing that, but it does give me more incentive to do that walking and weight lifting. I don't plan to break a hip!

The second test was a new CT scan, for which I'm still waiting on the results. My plan is that this report will say "Oh everything looks good, the Prednisone started the job and the TNF drugs will just finish it up and you'll soon be in remission!" That's my plan anyway.