Posted by: hockeygrl1 | May 16, 2012

BenLysta after infusion #1

So, I got my medication and there’s no real change yet. I think I’ve gone backwards and am sleeping more and way more exhausted.  I received BenLysta on Friday and was still feeling nauseous on Monday, but I had to push through and pretend I was normal.

You see, my daughter got into an arts high school here in Minnesota. It was orientation day. A lot of walking and standing and waiting around. Just what you want to do when you feel like napping. My mom drove; great idea since I was nodding off on the hour-long drive down there. It was one of those days that you’re glad you didn’t miss, but were sad that you had to go.

So From Friday to Monday I slept.  I really can’t tell you much about the weekend at all. I was just so tired. Much like when I was diagnosed in 2007 and my kidney’s were failing. I know this can be a side-effect of the drug; I just don’t understand why it hit me so hard when others I have talked to are fine. It will be a problem coming up.  I have to get a dose next week, I have it scheduled on the 22. On the 23rd I have my son’s administrative day at St. Cloud State. Got to get him registered for classes and stuff. Then on the 24th I have an interview with a psychiatric person for Social Security because they are reviewing my case.  I guess I’ll have no trouble at all showing them how exhausted I am and I hope my fibro pain is on high. Which it is. I think the drug made it worse in my arms and legs. Only sitting still and wrapping them in a heating pad helps.

Depression is another thing with BenLysta. I’ve been lucky. My mood has been steady and OK. No dip yet. It has warnings all over it for suicide, but I don’t think I could even do that because of my kids. Love them to death!

On my week I don’t get an infusion, my baby boy graduates from high school. I’m going to be a mess!! He is my comic relief, my rock, my little man. He’s been the man of the family the whole time and I have raised him to be everything I’d want in a man. So 18-19 yr old girls, you should hit him up!! He has goals and will make money. He’s a great son.

I’ll keep you up to date on what I’m feeling. So far so good I guess. None of the really bad allergic reactions happened and I’m hiding from some of my family because they all have a cold. Please let this be the thing that gets me going again. I need to get moving and get my endurance back up before I can even think about returning to work. I don’t know what Social Security thinks. You go from almost better to able to work full-time and keep a house for your family?? I think that’s another blog.



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