I’ve now been off Prednisone since June 26th. Nearly everyone I say that to assumes I should be ecstatic and feeling great now that I’m off that evil drug. Prednisone is, in fact, evil in many, many ways. But what they forget is that it is also a miracle. It can nearly instantly take all pain away. Now that I’m off it, a lot of pain has returned. I even have pain in new places. At this point, it isn’t 100% constant or totally debilitating, so it hasn’t returned to the level it was prior to being medicated, but especially when a storm comes through, the pain radiates and had been so bad that it has pushed me to tears. And there have been a few storms lately.

Additionally, I’ve just had knee surgery for my meniscus tear. I found out that during the surgery they discovered I also had broken up cartilage on my femur that they had to smooth out. All has been fixed, but the pain of recovery is still there, and sometimes (especially during these stormy times) the knee pains joins in with the other pain and radiates throughout. My ankle pain has increased and has me worried once again that one day I could become completely unstable on my own feet.

The good news is when the pain subsides, it is amazing how my thoughts and feelings and mind clears into all things beautiful. I forget all my sad and desperate thoughts, and I just return as fast as I can to my normal and amazing life.

The other good news is that I don’t seem to need my oxygen as much as I used to. Since I got the CT scan and returned from our family’s reunion, I started getting my pulse ox out again and testing different activities. I still get out of breath during some fairly normal activities – but it turns out that *most* of the time my oxygen is not dropping below 90, even though my heart rate is higher than it should be for said activity. The doctors don’t really seem to have a direct answer to why this is happening, except to tell me that it should subside once I “get fit.” I’d like to take this opportunity to let those that don’t know me that I am in no way overweight and quickly going back down to my normal weight now that Prednisone is out of my life. And although I am NOT the most “fit” person, a person of my type and size and make up should be able to change a load of laundry from the washer to the dryer without my heart rate rising to the 120’s.

I have done some other tests though – where I live (at 6K feet) and at sea level – regardless of where I am, I still DO drop below 90 when I’m too exerted. Here’s my problem:I can’t always know when I will be TOO exerted. Obviously, if I’m headed out to the gym or a hike or something like that, I would take my oxygen with me. But I’m not sure where that line is before a bit out of breath due to my heart rate increasing, my oxygen staying above 90 and my oxygen dropping below. It’s been a confusing time for me with the oxygen. And I certainly don’t want to give the wrong impression. I’m THRILLED that I may not have to lead a completely tethered life as I once thought. But I don’t want to be so untethered that I forget to take care and use the oxygen when needed.

My other big concern right now is my CK level that will now be tested monthly. This test is a good indicator for whether or not my muscles are being attacked. It was abnormal when I went to Mayo, but by the next test it was normal again. It has stayed that way every quarter until the last one. I was on 5 mgs. I’m about to go in today and have it checked to see if it is still elevated, has gone back to normal, or is stable. I know that a CK level isn’t the be all and in all to whether or not my muscles are now being attacked, but I can’t say for sure that I’m not also having symptoms. It is my job as a professional chronically ill patient to be fully aware of any and all symptoms. But right now, I can’t tell for sure that the symptoms I do feel could be related to myositis and aren’t actually related to arthritis since I just had surgery and spent a week in bed, after doing a lot of travel, or just what I will feel like in general without the use of Prednisone. So, I’m tracking my physical symptoms (feeling weak, more difficulty raising my arms to dress, more difficulty getting up stairs, etc) but holding off on contributing them to any one factor.

I had a great time at our family reunion and really enjoyed seeing so many that I don’t see often or only see every five years. The plane trip with three little ones went as well as could be expected. They enjoyed it, and we only had to endure a minimal amount of crying. We had a couple visitors upon our return and that was nice too. I took that trip to UCSF, and they seem to agree with all my local physicians are doing, so that makes me happy.

In the meantime, I’m looking forward to my oldest child’s sixth birthday party this weekend and some work event that I’m attending with my husband later that night. My mom and my aunt will be visiting soon, and during that time we will also be visiting with my brother. Right before they leave, my husband has secured an amazing campsite to take the kids (at least the oldest or maybe the oldest two) camping, but it is close enough for me and the youngest and my mom and aunt to come out and enjoy the beauty without sleeping there. I used to love camping, but right now with a two-year-old, my sleeping/pain issues and a recovering knee I don’t think I should do more than just stop by during the day. I’m super excited to hang out there, though. Days at the pool have been awesome, and I expect to have many more fun and relaxing days to enjoy there. All and all, despite any pain, worry, discomfort, fatigue, or other general malaise, the summer is still turning out to be pretty amazing, and upcoming plans will just continue that trend.