I need to consciously remember...

 ... that I AM better. I'm a bit discouraged now that Dr. Haverkos told me the norm is for people to improve up until the 4th month (I'm about 2.75 months in) on the clinical trial drugs and then they generally maintain from there. I look weird and am so heavy. I have swollen lymph nodes on the front and side of my neck that change my appearance completely, and I definitely have the Prednisone moon face. I'm very over weight.  I feel heavy in my body, like I'm trudging through mud when I stand or walk most days. I'm doing 5 mg Prednisone one day and 10 the next and see a difference if I forget the Turmeric (joint pain and swelling) so I am being faithful with that. 

I am really really tired a lot of the time but push through events I've scheduled. The night time meds help me sleep through the night, which is so awesome, but I believe it makes me groggy the 1st half of the next day. 

I have a rash but it isn't itchy, so I am grateful. I still go to light therapy but have no idea if it helps. 

I need to remember how badly I felt and looked when I was "chasing the Merry-Go-Round," trying to get on (the clinical trial) in time. 

I have been to the acupuncturist 3 times, but have no idea if it is doing anything for me. 

Today I have a lymphatic massage-who knows if that will help anything. 

This morning I went to the chiropractor I see every other week. I sometimes thing it makes the pinched nerve feeling in my left neck worse. Who knows. 

So, long story short, I feel a little down about it all. Having your appearance change so drastically does something to you. I haven't had to deal with hair loss. One doctor told me he is always startled by how that affects people. I can see why. I've experienced using a wheelchair when I broke both ankles so I've had a small taste of that. I don't think about the changes in my appearance much, until I see pictures. Then, "Wow," I can't help but be startled. 

Hopefully I can report that I am back to normal soon and the meds have continued to work. 

xoxo






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