Wednesday, October 26, 2011

3rd treatment done

So I had my 3rd infusion last friday for Benlysta. The nausea was nonexsistent, but I was still pretty tired for two days after. Luckily I can handle being tired. I did however realize another side effect I was having... after 48 hours of sheer exhaustion I deal with several days of insomnia. That's right as of today (Wednesday) I have had maybe 7 hours of sleep since Sunday night. You would think I would be exhausted, but really I'm not. I hate being awake all night. It is so boring. I do go watch TV, but our couch and chair are so incredibly uncomfortable that I begin to hurt all over so I can't do it for long.

I have realized that the Benlysta is begining to work. First, I have a monthly flare with my cycle and I didn't get one. And second, I worked the Seattle Lupus Walk and even after all that no flare. I have had some minor set backs with my pluerisy, but that I have been able to deal with.

It is really exciting to know it's working. I'm still causious about talking about the fact that it's working. But I secretly know that it is. It is so exciting to think it might be working. 11 years of medication after medication.

Now my infusions are monthly, so I guess time will tell.

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.