Hey Mom....
So I got some good and some probably not so good news. The rest result for my biopsy came back and looked great. There was absolutely no kidney damage whatever! Yay for us! Bad News: the form of lupus nephritis attacking my kidney is the most aggressive kind. And it is most often treated with chemotherapy... That's a big one to swallow I know. Fortunately my rheumy decided to try a different tactic first. So he had me hospitalized the whole last weekend through Monday, and IV blasted me with 1000mg of prednisone a day and also started me on something new called cellcept. After I was discharged I felt really good, I guess being in constant pain everyday eventually leaves it to be forgotten about. But waking up with no pain, NO PAIN, at all, and being able to breath and hiccup without a painful back spasm. I forgot how empowering the feeling is. Health can seem like such a fantasy land when it's no where near your grasp. One forgotten what it's like to have a vacation there for awhile. But in all seriousness, I do feel better. But the side effects of the new drug are so awful. Prednisone and it's slow build up I dealt with before. But really, an overly noticeable muffin top that claimed it's real estate in 4 days? I need for time to adjust than that. Plus! (this is outrageous and TMI) this afternoon at work i noticed that the top from of my vagina, like the v shaped pubed area, was swollen at least 3-4X normal size! WTF?! Sorry, I can't handle the magical spontaneous appearance of a small butt making it's home on top of my vag. Don't they call that a front butt? Yuck, it definitely interfered with the way my pants fit too. It's happening to fast...
I get that there will be changes,believe me I know I'm not immune to them. But they aren't suppose to come on so fast, and weird body parts swelling. I'm not okay with it. At mydoctors apt on Monday I think I'm going to ask him to take me off it, it feels like poison in my body.
I take have so more lab tests tomorrow. We will get the results at my Monday apointment. I'm praying so hard that those treatments worked. Chemotherapy is just so brutal, I saw what it did to you mom. You tried to hide it and put a smile on your face and be tough for us. This time I can't try to be you, I dont know if I'll be able to do it. Especially not alone, at least I have Mike who has already proven himself a keeper through all this. But if I was doing chemo I think I would need more help, therapist help. That's an okay route to go down, isn't it? I'm just nervous!
Mom please put in a good word for me up there,so this could maybe turn out for me?
I love you soooo much
Wish I could have some of your wonderful advice,
Love Sunshine
Thursday, October 27, 2011
Friday, October 21, 2011
Dear Mom,
Life has been rather rough lately, really rough. I love living in this new city though, it's just the right size for me and I absolutely love the fresh air. I haven't really made too many new friends but school and work keep me pretty busy and Michael is enough for me :). Other than that, I've had alot of health problems the last several months. I've been in the emergency room twice and I finally got in to see a rheumatologist, who
Told me I am having a flare up of my lupus. Not only that, but that it has escalated and is attacking my kidneys. I'm not going to lie, it's absolutely terrifying. Especially being practically alone here in a new City with family so many thousands of miles away. I had to have a kidney biopsy last Thursday and it wasn't as bad as I had expected but it wasn't exactly fun either. Oh, and another thing: the doctor put me on a bunch of steroids again, so I'm going to get a fat face again. Honestly I don't know how I am going to get through this this time. When I think about what an emotional roller coaster ride I went through last time I just don't know if I can handle that again. I'm not sure how I survived last time, especially I'm the midst of your death adding to it all.
This time it just seems even scarier. Of course I have to wait a week for the results of my biopsy to see how bad the kidney damage is. What if it's really bad? What if I have to do dialysis? Or even worse, a kidney transplant?! What if I die? Renal failure doesn't sounds like a pleasant way to die. I'm going to be a pessimist here and say IM SICK OF ALL THE BAD THINGS HAPPENING TO ME!! GOOD GOD PICK ON SOMEONE ELSE FOR A CHANGE, I THINK IVE HAD MY FAIR SHARE OF SHIT FOR ONE LIFE TIME. Yes, I'm ANGRY, I feel alone, and I wish you were here to help me through this. I need you desperately.
Love your daughter,
Sunshine
Life has been rather rough lately, really rough. I love living in this new city though, it's just the right size for me and I absolutely love the fresh air. I haven't really made too many new friends but school and work keep me pretty busy and Michael is enough for me :). Other than that, I've had alot of health problems the last several months. I've been in the emergency room twice and I finally got in to see a rheumatologist, who
Told me I am having a flare up of my lupus. Not only that, but that it has escalated and is attacking my kidneys. I'm not going to lie, it's absolutely terrifying. Especially being practically alone here in a new City with family so many thousands of miles away. I had to have a kidney biopsy last Thursday and it wasn't as bad as I had expected but it wasn't exactly fun either. Oh, and another thing: the doctor put me on a bunch of steroids again, so I'm going to get a fat face again. Honestly I don't know how I am going to get through this this time. When I think about what an emotional roller coaster ride I went through last time I just don't know if I can handle that again. I'm not sure how I survived last time, especially I'm the midst of your death adding to it all.
This time it just seems even scarier. Of course I have to wait a week for the results of my biopsy to see how bad the kidney damage is. What if it's really bad? What if I have to do dialysis? Or even worse, a kidney transplant?! What if I die? Renal failure doesn't sounds like a pleasant way to die. I'm going to be a pessimist here and say IM SICK OF ALL THE BAD THINGS HAPPENING TO ME!! GOOD GOD PICK ON SOMEONE ELSE FOR A CHANGE, I THINK IVE HAD MY FAIR SHARE OF SHIT FOR ONE LIFE TIME. Yes, I'm ANGRY, I feel alone, and I wish you were here to help me through this. I need you desperately.
Love your daughter,
Sunshine
Subscribe to:
Posts (Atom)