Posts

Just Call Me Rosie...

So I had an ESI in my neck yesterday. For those of you that have no idea what that means, its an epidural steroid injection. Apparently, my pain management guy has some killer steroids because wow, have I got the red face and the serious bitchies today. I'm also feeling the need to put up a Christmas tree or twelve.... So there has been a lot of sitting around today feeling sorry for myself. The Mr. has nixed Christmas tree decorating and I have neery a closet or a childs bedroom to clean (I did them all the last time I was flying high on steroids...17 closets...go me). My face is so warm and red that I'm pretty sure if I got out a steak I could cook it to medium rare..possibly rare and I could roast a few marshmallows if you prefer... So while I was sitting around bored and on fire I just happened to think about when I was getting my iron infusions done. My Hematologist is also an Oncologist and I ended up having my infusions in the chemo ward at his office. There is pretty mu
1 comment
Read more

I'm Sexy and I Know It...

What a difference 24 hours makes. Today was my first appointment for what I call my surgery rounds. I saw my Rheumatologist and I have to say the more I see him the more I like him. Yup, he's about my 3rd one within the last year but I think I have finally found a keeper. I started Rituxan in April against my better judgement (I wanted to try Actemra). The first month was seriously a killer, between two huge doses of steroids and the obviousness of it being a cancer drug, well let's just say I wouldn't be a great cancer patient. I have never slept so many hours in my life as I did that month. That said, holy shit, batman....it worked. Probably better than anything I have taken in years. Am I cured, uhm no! But a lot of what I'm still dealing with is deformed joints that have been damaged while trying to find the right meds. We are slowly addressing those issues one at a time (good times). So you can imagine when I thought that I would need to stop taking Rituxan for my
1 comment
Read more

Scary Stuff..

So I went on vacation and it was wonderful. So much better than I had even hoped for...and now I've been back three days and I'm a hot mess. I promised myself that I wouldn't worry about my health while I was gone and I think I did a pretty decent job but now that I'm back and I'm looking at a rheumatology appointment tomorrow and a neck injection on Friday, I just don't want to do it. I don't want to talk about surgery on my foot, or going off my meds for 6 months (you know the ones that we just found that work), I don't want to up my methotrexate injections...which may be a problem since the freaking pharma company that makes it has decided not to make it so there's a shortage, I don't want to deal with more cortisone injections, I don't want to have this conversation with my Endocrinologist who is going to flip his lid when I tell him I need surgery. I just don't want to, I'm scared.... I remember what it was like when I went off m
1 comment
Read more

Ugh!

Today I was going to post about my missing eyebrow but I just can't be funny because I'm sad. I got the results back from my CT Scan and they show that my ankle hasn't fused. When I went back to my surgeon it was with the thought that I would eventually be having surgery because the fusion was a failure. At that point I was told that it looked like there could possibly be some parts that had fused and that we could take more time and see if it would finish fusing naturaly. I was given hope I guess and I got used to the idea of no surgery. In fact, after I got over the shock I embraced the idea, and now, surgery. There are so many things just for me that I worry about with my health on top of just having surgery, you know my sanity falls in there somewhere, too. But I have a family that is over loaded at the moment and when they hear about another surgery, I just don't know where the energy and patience is going to come from. I'm just not sure there is enough, betwee
Post a Comment
Read more

Discovering a Whole New Me...And I'm a Wimp...

I'm traveling by myself this weekend for the first time in something like 8 years.Uhm yeah, its freaking me out big time, you remember I put the N in Neurotic? Yes, Now I'm going to put my ass in a wheelchair. Yup, a really good friend of mine decided against my better judgement to move to Arizona and leave me behind (I told her I didn't accept it but dammit, she moved anyway). Every time I buy a plane ticket to go and see her disaster strikes (ok, so it's only happened once, the other time I was supposed to visit AZ with my parents and thankfully missed a horrible vacation...maybe that time worked to my advantage.) Anyway, the last time I had to cancel I ended up in the hospital a couple months later. So you can imagine that I made these reservations with the thought in my head of "am I jinxing myself?" (Yes, I talk to myself, at least I hope the voices in my head are myself.) So, slowly the days have been passing and I've been biting my nails, walking th
Post a Comment
Read more

Glowing the Extra Mile...

Ignorance is bliss and denial is not a river in Egypt. Either way, I would like to remain ignorant, so then you might ask why it is that I scheduled a CT Scan of my foot before my vacation, apparently I'm a doofus . So today was the big day where they took a gander inside my foot, you know the one that was fused for the second time a year a half ago. Usually at an appointment like this I'm all about getting a copy of the scan, this time I wanted nothing to do with it. In fact, if I could have dropped my foot off and went about my day without it, I would have been good. And then I wouldn't have had to walk the mile to the door and then another mile to the CT Scan department. Uhm, seriously...I'm having a scan on my FOOT because it hurts and we're not sure if its fused a year and a half later, what part of let's walk a couple miles on it sounds like a good idea. Whatever, apparently I'm unable to ask for a wheelchair because they don't have one quite big
Post a Comment
Read more

Holy Cow, Does That Chick Ever Have Anything Good To Say?

For the whole two of you that are reading my blog right now, I thank you (and wonder why). I've appreciated your responses and I'm glad to be back, too. I thought I might give you a little explanation as to why all I keep writing about is my RA. I've been fighting a flare for 5 years now. We've made a lot of progress but it's come with a great price in my health. Sounds wrong, right? Here's what I mean...last year we managed to make a shoulder that hurt so bad it nearly drove me to the edge better with cortisone injections. Those injections drove me straight to the hospital for a 5 day stay because my adrenal glands shut down and I went into shock, my endocronologist said he had never seen levels as low as mine before. I'm constantly saying to my husband that my people (friends and family) don't get what it's like to live every day life with RA and it finally clicked, that's because no one talks about it, no one writes it down because it would ju
2 comments
Read more