I Like to Move It Move It..."

October 22, 2014

Dear Diary,

I have been thinking about trying to start exercising again . Before I was diagnosed with ITP in June and then Lupus in July, I had been exercising quite a bit.  I was outside walking or riding my bike a good 4-5 times a week. I was eating right and feeling good. Then out of the blue...BAM! My whole world changed. I have been in and out of the hospital twice since then and have been on heavy duty doses of prednisone, as well as Rituxan treatments, which I am still taking. I have my 3rd treatment tomorrow. I really hope they work for me.

Anyway, I have been thinking I need and want to start exercising again in small doses, especially when I feel like I can. I have some Leslie Sansone walk dvds which I have always liked because I can do them indoors, and I also have a Rodney Yee am yoga 15 minute video that a good friend gave me. And yes, while he is sagga bagga all the way, it is a very relaxing 15 minutes. So I got to thinking about Yoga. I already have a little experience with it and a mat, so I figured I will try to find a yoga class to go to. I want to find one to go to because I think it will create more variety in my workouts, it will be community based because I will be doing it with other people, and it will get me out of the house, so even though I am still indoors exercising, I will have had to get out to go do it. This is important to me because I already feel like a shut in sometimes.

Photo from Imgarcade.com

And so I came across this great article. Yoga and Lupus: An Introduction. from the blog, Living Well With Lupus. After reading it I am sure that yoga is the form of exercise I want to invest in next. One thing I really like about yoga and always have is the whole Zen mind and body connection. I believe in that connection and I meditate so it just seems like yoga be my next extension of  dealing with my Lupus and ITP.

I need to "move it, move it" and I want to. Wish me luck in finding a class.

~ Me

I'm Wiped

Thursday, October 16, 2014

Dear Diary, 

I am completely wiped. The rituxan treatment went well today but it makes me completely exhausted. You know you're in trouble when just walking to the bathroom or taking a shower or rolling over in bed  makes you feel like you have been exercising for a week straight with no sleep. And all your limbs feel heavy. That's just not normal.  Hopefully I'll get some respite from this fatigue tomorrow.  

~Me

Another Treatment Tomorrow

Wednesday,  October 15. 2014

Dear Diary,

I have another Rituxan treatment tomorrow (my second one). I am really hoping this helps and that I can taper off of the 60 mg daily of prednisone that I am on. Prednisone is not good for me. It makes me hungry (and I have gained weight), it gives me sleepless nights( or at least not restful ones), and it makes me nervous with a jumpy stomach. Last week, the Rituxan gave me a headache and wiped me out for a day, but that was it. I was glad not to have had any allergic reactions to it. The headache was more like pressure in the head like when your on an airplane and your ears won't pop, but you wish they would.

From Pinterest

I have to say, Diary, that being in the Chemo room to get my treatment with with all the cancer patients was so sad. Last week, I just wanted to cry because this elderly lady was crying to the nurse about her hard life, and I just wanted to wave a magic wand and make things better for her. Bless her heart. And the nurse was wonderful. She held the lady's hand and listened. And sometimes, I think that's just what we all need . Someone to hold our hand and listen, and sometimes to admit that yes, you have been dealt a shitty hand, but we just have to focus on all the positives we can.

And there was also a little old lady who asked me my name and told me that she would pray for me. I'm not a religious person, but I thanked her. Hey, I thought, I'll take what I can get. And I couldn't help but think about the song lyrics..." Human Kindness is overflowing, and I think it's gonna rain today..." I saw a lot of kindness last week, and I was the recipient of some of it. And I was thankful.

And I also felt bad, because I was happy, too, that I don't have cancer. And I felt a little guilty. 

So, treatment #2 tomorrow. 

I want to get better, so bring it on !

Hopeful,

~Me

Waiting for the Other Shoe to Drop ...

Monday, October 13, 2014


Dear Diary,

Here I am again...Waiting for the other shoe to drop.

It's hard not to wonder if I'll get the dreaded phone call after my lab work each week: the dreaded "go back to the hospital call" because your platelets are at critical levels (under 10,000) .  Its hard because the last time I had to go back to the hospital, I felt great. I had even gone out to lunch and movie with a dear friend. And I wasn't too fatigued or sore or anything, and I had no real symptoms, just 1 tiny bruise. It's always hard to be in the hospital, but even harder when you don't " feel" like you should be there because you don't feel like any things wrong.  And so every week when I get my blood drawn, I wonder if I will get the call and I hope that I don't. And as hard as I try to just expect good news and to not worry about getting a phone call, there's always a little doubt that reigns me in. I'm really trying to coexist with this and accept it as part of my immune disease. Not to accept it as the end result or a prison sentence, but to accept it as a stage or a stepping stone to future better days and maybe remission. It's like the Serenity prayer.

Grant me the serenity 
To accept the things I cannot change; 
Courage to change the things I can;
And wisdom to know the difference. 

Living one day at a time; 
Enjoying one moment at a time; 
Accepting hardships as the pathway to peace...

And so I am ever hopeful  and when I don't get a call, I feel free again if only for another week. But I'll take what I can get. 

It's Monday evening now, and no call. Whew! Now I relax a little bit.

Here's to No News is Good News.

~Me