About Me~

Attached~

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UHF. I ‘ve missed a couple of days writing here. I hate when that happens. I’ve written . I mean , I never go a day without writing something down. My brain hands won’t allow that.

Today I had doctor appointments all day , and so my schedule has been all messed up. I usually rise at 4 am , and do my lupus support page. I have almost 1600 followers there now. It’s a place where people with lupus or their family members can come and be inspired, have a laugh, ask a question, or just want to seek understanding for what they are going through. Then I try to come here and write , either a poem, or just something that has inspired me somehow. So , I ‘m trying to get back on track.
As for today I’d have to say , I guess I’d like to say I ‘ll have to write about something I found totally surprising. Something I would never thought would have happened. My oldest son, is 15 now. We’ve always had a special relationship, I was very young when I had him, only 18. He had special problems, and I perhaps was a bit overprotective. Joseph went with me everywhere. I didn’t let him out of my sight. He was my little hip attachment. He sat in his car carrier , outside the shower curtain when I showered so I could talk to him , “What ya doing out there buddy? Mom will be done in a minute. , Okay?” . Instead of riding in the cart of the store , I carried him in my arms.”What should we get Daddy for dinner today, maybe hamburgers?” . He slept between my husband and me. He didn’t stay with a baby sitter, and he didn’t go to preschool. He was my conversation buddy, all day, every day, “How bout we go to the park? “or “Boy ,it’s raining , let’s color Grandma a picture.” I didn’t work. People everywhere asked me, “Don’t you get SICK of having him ALL the time?” , or “GOOD grief, DON’T you EVER go anywhere without him?” but I just couldn’t bring myself to do it. His smell, the feel of him. The weight of him in my arms. The sensation of him beside me in bed. The knowing that I was responsible for his care, and the look in his eyes when he gazed at me. He grew older and when he was was 7 and 8 years old he was still my friend, and still spent his time with me. We read books together, and did school together . 10, 11, 12, and now he is 15, the story is still the same . Oh sure, now he sleeps in his own room in his own big futon. He has a big teen boy room. And other friends of his own, but today we were at the doctor’s office and he wheeled me back for my consult at the cardiologist. We sat, and were just carrying on conversation, like two friends who had know each other their whole lives. And then it dawned on me, that’s exactly what we were.

About Me~, Uncategorized

Forever and a Day~

greenfairyfantasy

Well, It is the 11th day of March and my first day to post in 2013! It seems like forever and a day since I’ve posted! This has been a very rough year for me so far. Lupus has been kicking my tuckus.   How are you all? Is the new year going to suit you? How in the world have you all been?!? I feel like I have dropped off the face of the earth! It’s good to be back in the blogosphere as they say! I hope you are all doing well, or as well as you can. 

  My health had been great ! I suppose that must be one of THE most frustrating things about lupus EVER. To be fine, and then BAM! You just wake up and have to start all over again from scratch.  I just had a three year remission period , with NO medications needed.  It was fab.  I was able to really get out of the house , I was even able to go with my kiddos to activities, and lost a ton of weight. Yay, me! 

  But , starting late summer 2012 , I really started to go downhill again. I had to go back on chemotherapy, and steroids.  These were the drugs that sent me into remission before so we had no reason to think that it wouldn’t work this time. Well, surprise.  Chemotherapy not only decided to make me seriously sick  ( crazy nausea, anyone?) , but it didn’t help the lupus any either.  My rheumatologist told me about this fairly new treatment called Benlysta, and thought that I might be  a very good candidate for it. 

So after much paper work and waiting , I got approved and had my first infusion today. Tomorrow, I’m going to post about the whole process, and how it all went, but for today, I’m just checking in with you all, and saying hello , my old friends, glad to be back “home”. Much love, and as always, ((HUGS)) Ruby