Tuesday, October 18, 2011

Benlysta and Other feelings

I started Benlysta 5 weeks ago and on Friday I get my third dose. After the last two I have spent my weekend sick and tired. Normally I would say, it's not an issue, but this has knocked me out. If it works, it will be VERY worth it! So far other than the two days after each infusion I feel my normal.

This last weekend was the Seattle Lupus walk. I sit on the committee that puts it on and I must say I expected to have it hit me very hard. I didn't "wear out" until after 12:00 which is a huge improvement over last year. Now I did go home and spend the rest of the weekend resting. So I don't know if the fact that I feel ok today is a sign of successful resting or if maybe this new med is starting to work. I guess only time will tell.

And now on to some venting...

In the past I have been exposed to people who claim to be lupus patients. (I know I shouldn't judge and believe their word). But their actions really make me question whether or not they do have it. I have been exposed to one of these people a lot lately, and I just want to scream. I feel like she is belittling my disease. She never says she is doing a treatment she just waits for one of us to talk and then agrees or claims her doctor has talked about that treatment. It is so frustrating.
(one once told me that she too had Lupus and Fibromyalgia too but she didn't believe Fibromyalgia was an actual issue).

It's just interesting. Why are these people so in need of attention, why do they have to belittle my suffering?

Hopefully I can let it go, hopefully I can move on. Thanks for letting me vent. And for the record, I rarely question anyone who has Lupus, but after spending a LOT of time with a couple of people i have learned that their actions speak a lot louder and if they have Lupus I would be SHOCKED. What I would give to be healthy.

1 comment:

BD said...

From your description, Benlysta (side effects) sounds a lot like Methotrexate? that fatigue general yuck feeling after taking it but it does help to improve your feeling overall. I'll be interested to hear how it's helping you as you keep going on it.

About others and lupus, you know what's funny? Early on in my diagnosis I never questioned anything was wrong, I mean I knew something was wrong with me but I always questioned if I really had lupus because I could do so much and I had more good days than bad. Now my bad days outweigh my good days and I even have organ involvement so I kind of see both sides. I was oblivious back then, now I have less patience.

As far as people not believing fibro is a real ailment... that bothers me. I have both and there is no question in my mind that the fibro is real.

Take Care