I do love my Christmas decorations though, and I'm just too tired to start pulling them down.
One another note, I can't wait to go to my rheumatologist at the end of this month. I have been on Benlysta infusions for the past 10 months, and they've helped, but they haven't stopped things from progressing and they haven't shut down my immune system. Benlysta is a drug that was approved in the last year by the FDA to treat Lupus...it is the first drug ever manufactured for Lupus and the first drug in 52+ years to be FDA approved for treatment of Lupus! Here is a little info about Benlysta. And I have only good things to say about this drug. It allowed me to function more normally for the past year...I ran in the yard with my kids (my daughter laughed hysterically when I ran because in her 4 years of life she had never seen me run and it seemed odd to her), I was able to go days without naps, I had more energy. But I am still so very anxious for my next appointment where we will be discussing Chemo!! And I say that with true enthusiasm. At first chemo sounded scary. When you mention that word every one's face drops and they feel sorry for you. But right now, where I stand, chemo sounds like a great answer. I know that a lot of people say "Chemo for lupus, I thought chemo was for cancer?" But in certain cases, the side effect of chemo, which is shutting off your immune system is a desired effect. It could possibly knock my Lupus into remission, and that is BIG for me. Here is a good explanation of how chemo can help with lupus, this comes from the blog Sam VS Lupus :
"But lupus isn’t cancer, right?
No, lupus is not cancer. Lupus can predispose a person to develop certain cancers, but it is not itself any form of cancer. So why do we take chemo? The answer is that we basically take it for the side-effects. When a cancer patient takes chemo, one of the side-effects of the treatment is that (s)he becomes very immunocompromised. The chemo “accidentally” kills cells in the immune system while killing cancer cells; it’s a form of chemical friendly fire. This is why cancer patients tend to be very careful about crowds, and will wear face-masks if necessary to avoid infections. Lupus patients, on the other hand, need our immune systems to be shut down, since the immune system is responsible for our disease.
How does chemo help treat lupus symptoms?
What many people don’t realize is that chemo drugs generally don’t target any specific kind of cell. There are certainly exceptions, but most of the time the chemo is a wide-spectrum poison that kills any rapidly dividing/growing cells. Since many cancers grow much more quickly than most healthy tissue in the body, this strategy can be highly successful in treating cancer. Unfortunately, cancerous cells aren’t the only quick-growing cells in the body, and other quickly growing cells will also be killed by chemo. The idea is to give a patient enough chemo to kill cancerous cells, but not so much that it kills the patient. As it turns out, the cells in the immune system are some of the most quickly growing cells in the body, so they are hit hard by chemo drugs. So for those of us whose immune systems are overactive, chemo can help kill off enough immune cells to help improve our symptoms."
Her blog explains things more scientifically since she is a doctor, but I've also found another video that explains the benefits of high dose chemo , which is what I'm hoping to do.
I feel like some days are a bit of a blur, I might not remember what I ate for breakfast or if I took my meds, sometimes I don't remember conversations I have had (or maybe my husband is making my memory lapses convenient by saying "Yeah, I told you that, don't you remember?). I do feel "lupie" a lot, but I guess that's where the word came from! I've never asked God "Why?" because I feel blessed, but some days I wish Lupus wasn't a part of my daily routine. I wish I didn't hurt when I woke up, or have to take 17 pills a day + one monthly infusion, or need to nap 1/2 way through the day, or not feel like moving or cooking or cleaning because I'm still tired and my prednisone has worn off, or gaining weight and stretch marks from my prednisone, or the possibility of waking up on day and having major organ failure, or feeling the need to leave things in order for my children in case anything happens to my health. Okay, now I'm just complaining. I'm just ready to press fast forward on life and get to the end of this month for that doctors appointment. I am hoping for a monumental change!! A good one, although I know its not going to be easy. Some days I just want my life back:)
But as a little happy, I have already bought 2 cute head wraps for when we get started!
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