Arthritic Critic

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...

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 ...

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...

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...

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...

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...

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...

Yup, 40 years. I've probably had RA longer than pretty much anyone else I know. That said, I probably look better than most people who have been diagnosed for 10 years. I spent most of my childhood in remission . Yes, that unobtainable goal of NO PAIN , and I enjoyed it, as much as a child can enjoy something that they think is normal. As life went on, things became more difficult. I was proactive and got on biological meds as soon as they came out when they didn't work I pushed harder. With my first try out I gained remission on Enbrel. Two remissions in one lifetime, I guess that makes 40 years of inflammatory arthritis almost bareable and then the Enbrel stopped working and the RA got worse and then Remicade gave me a bad reaction, and Humira didn't work, then Arava and Orencia and even methotrexate didn't work. Then I started to look like a real RA patient, one with a limp due to two ankle fusions. A gimp due to two back fusions, and thankfully a pretty easy elbow s...

I had a doctor pretty much tell me to suffer a few days ago as if my pain wan't important enough because it didn't require surgery (and believe me, I'm thankful for that...now if only the pain went away just because it doesn't require surgery.) The past few days on the RA boards I frequent I've read repeatedly about people being told they are malingerers. That's a lovely word for what people really mean... It's all in your head (ironically, right now it is in my head...and my neck) You're lazy... If you just got up and moved around more you would feel better.... Lose a few pounds and your joints won't hurt as much ... It's got me thinking, who would chose to be sick? I know there are those out there that take advantage of disability (though its hard to understand how they can get it when it's so hard for those with a disease to actually get it) payments. There are those that want to sit on the couch and have someone else do the work for them...

Up, down...somewhere in between. That's pretty much how my health is right now. We seem to have found a drug that finally works for my RA but trying to get the doctors to take my residual pain from previous damage seriously seems to be like a long bout of banging my head against a wall. I don't understand why some doctors act like RA is no big deal. I had my ankle eat itself in 3 months, what about that is no big deal...mostly it's that the pain is not located anywhere on the doctors body. Why would anyone make this kind of pain up. To me living my life painfree would be a blessing and if I woke up tomorrow painfree I would never pay another copay in my life, happily. If every time a doctor told me there was no reason for my pain it actually went away, life would be good. Unfortunately that isn't the way it works. All this to say I have a congenital fusion in my neck from when I was born. It's called Kippel-Feil's. It's a natural fusion between c2-c3. I have...

I have RA. It effects me all over. I have 10 different doctors. I'm sick and probably a little frustrated also. One of the things that I really like to do when I'm able is cook. As I start to cook more I realize what in my freezer I need and what I don't. So I put all of my frozen stuff in a bag and donated it to the local food pantry. Of course before I did that I managed to pick up the 30 pound bag from the freezer and hurt my shoulder. The shoulder that I've been working with my surgeon to get better for the last year. That shoulder that I've had 5 cortisone injections in, that shoulder that put me in the hospital from steroid induced adrenal insufficiency. I should feel horrible that I re-injured my shoulder but I don't. How the heck are we supposed to live a normal life if we can't lift a bag when no one else is around to do it? What happens when you need to vacuum? Or pick up your child? Do we live in a bubble because there might be a chance that we in...

The other day I was complaining to Joe as I'm known to do. When I started to moan and groan, "I'm 38 and I shouldn't have to be dealing with my body falling apart"....moan, groan...you know the usual things I normally complain about. After I said the "I'm 38" part for about the 5th time it finally occurred to me that I just celebrated a birthday and I am now 39. I looked at Joe and said, "uh yeah, I'm 39." He just smiled at me and kept his mouth shut. I guess he figured if he corrected me at that point he probably wouldn't have lived to see his 39th birthday....smart man!!

I've often heard people mention that people in wheelchairs are ignored, or that people don't make eye contact with them. In fact, because I've read this so many times I try and make a conscious effort to look someone in a wheelchair in the eye while I try to help them to the best of my ability in whatever way I can. This has been an interesting year for me. I have found myself wearing a corset, a couple of bone stimulators and a cam walker (a boot from my foot to my knee.) I haven't had the situation with people ignoring me, in fact, I have had the opposite and every where I go I get questioned. What did you do, what is that thing, what does it do, is it helping, how do you deal with the heat....until I pretty much feel like I have given every stranger within a 50 mile radius my life story. As I have gotten sicker my life has become much smaller and as you can imagine, I don't even want to tell the people I like about my health for fear of unasked for suggestions or...

As you may have notice by my lack of posting, I'm not doing so hot. I have a marathon of doctor appointment this week and it just keeps getting more and more depressing. Cortisone shot in my knee on Monday, sign up for a endoscopy on Tuesday, Orencia infusion and an appointment for an injection in my TMJ on Wednesday and I'm only half way through the week. I'm on my second infusion of Orencia and it doesn't seem to be doing very much. In fact, both my left elbow and my left knee are bothering me and I can barely get my mouth open. I'm feeling pretty lousy for having $8000 worth of meds running through my veins. Dr Angry managed to, well...make me angry this week. When I went to see him about my knee and asked for a cortisone injection (my knee is sticking...it gets stuck in the bent position) he looked at me and gave me a big smile and said "You know I don't want to do this, right?" I know it's stupid and petty to be upset about this but I really a...

I just don't understand why some people have to go through so much stuff. I know these times are supposed to bring me closer to God but what really happens is it makes me wonder where the heck God is when these things happen. Really, when you fight so hard to get pregnant, have problems, then have more problems and find out that you might have even bigger problems, at some point don't you feel a little picked on as opposed to "closer in your walk with God." And no, this is not my situation but then mine hasn't been any easier in the last 3 years. I am no Job...I can't keep saying, "ok, God...bring it on, I'm up to the test." Because I'm tired. I'm tired of seeing people that I care about fight, suffer and be scared. I'm tired of being all of those things myself. And I just don't get if God is supposed to be out there watching us, how the hell can he let this stuff happen?

A few weeks back when I started to feel a bit better I decided to sign up for myRAfitkit. It's a workout for gimpy people like me. I went to their website and figured out what exactly would work for me and they figured out a program that they thought I could handle...uhm yeah...maybe. They were nice enough to mail me information about their site and a DVD of my exercises. Now this is where it gets weird. I pull the envelop out of the mailbox and it's already opened...and it's a pull tab so it didn't accidentally not get closed. Yes, I kid you not...someone stole my RA exercise routine. Which I truly think is the most warped things I have ever heard of...especially since it's free to anyone on the internet, RA or no. I haven't had a chance to go back and request another DVD because I'm sure when I tell them my copy was stolen before it hit my mailbox they will laugh themselves silly. I think I've decided to start with yoga again, seeing as how I just foun...

When Hope was a baby she used to have a period of the day that she was just cranky and inconsolable. It seems that you don't need to be a newborn to suffer from the witching hour. I still struggle with it every day, especially while I'm trying to heal after surgery. I think I've posted here about the surgery schedule in my family this year. My mom had surgery on her ankle this February, I had surgery on my foot/ankle in March and today my Dad had his knee replaced. During today's witching hour I realized just how much of a toll all of this has taken on me. I have read that very few people have complications or die during surgery but when you have 3 people going through surgery in such a short time you wonder how everything is going to turn out. (Though maybe that's just me because I had complications during my back surgery.) During the other surgeries I did ok but on Sunday I told my Dad he had 48 hours to cancel..and I meant it. Most of the time surgery turns out t...

So, last week I ended up getting a fun ride in an ambulance to my local hospital to be diagnosed with the flu. I was having a pretty difficult time breathing or to use the technical term hyperventilating (see I'm moving through the alphabet...first I was a hypochondriac now I'm a hyperventilator). It was a rush trip so the getting of the insurance information somehow didn't quite happen...which believe me is quite odd. I have often considered getting my insurance information tattoo'd on my arm so I wouldn't have to produce an insurance card at all times. The only problem? What happens if I change insurance.... So needless to say I watch my insurance claims come through like a hawk...mostly so I can figure out how much to worry over the thousands of dollars I owe at the moment. Yes, it is a total stress reliever. While I was studying my claims last night I finally realized that I hadn't seen a claim come through for the hospital yet. I mentioned it to Joe wonderi...

I made it through the ankle surgery with no complications and then promptly caught the flu and ended up back in the Emergency Room a few nights later. Looks like the immune system just couldn't handle the one two punch of surgery and flu and it's kept me down for the last few weeks. I'm less than 2 weeks post surgery and even with the flu I'm doing pretty well and I'm so damn thankful. It's not all good news. My first ankle fusion was not a success. The last surgeon used bone marrow aspirate instead of using cadaver bone and it seems that I didn't fuse well at all. Dr Foot came in before I even had surgery and told me that I would most likely need a second surgery. Yeah, not the news I was hoping for. I chose to do the subtalar fusion and revise the triple fusion at a different time in the future. It's a good thing that we went in when we did. I had a lose screw in my midfoot that Dr. Foot tightened and there was a lot of dead bone in the hindfoot that h...

Last weekend we were lucky enough to be able to run away to the Four Seasons in Chicago. We've stayed in some nice places (The Drake which is right down the street last year) before but nothing like this place. You want to talk about living in the lap of luxury, and how! Unfortunately, and you knew that was coming...Hope picked up the flu on Saturday and spent most of the weekend in bed. Though 600 count sheets and a down duvet, not a bad way to go to nurse yourself back to health. Mom and Dad ate room service for most of the weekend and pretty much just reveled in the view and the cupcakes from Sprinkles (I don't get all the hype...it's a cupcake). On Sunday morning I guess Hope felt like something cold to drink. She was running a fever so Joe was sleeping with her and I slept on the couch (surgery tomorrow...can not catch the flu). I heard the pitter patter of little feet but didn't think much of it, I just figured that Joe was wandering around. I got up later that mo...