Hope Floats....

2012-09-20T18:49:00.000-05:00

"One of our most difficult duties as human beings is to listen to the voices of those who suffer. The voices of the ill are easy to ignore, because these voices are often faltering in tone and mixed in message, particularly in their spoken form before some editor that has rendered them fit for reading by the healthy. These voices bespeak conditions of embodiment that most of us would rather forget our own vulnerability to. Listening is hard, but it is also a fundamental moral act; to realize the best potential in postmdern times requires an ethics of listening. I hope to show that in listening for the other, we listen for ourselves. The moment of witness in the story crystallizes a mutuality of need, when each is for the other."

The Wounded Storyteller: Body, Illness, and Ethics by Arthur W. Frank

This is why I blog...

Just Call Me Mush Mouth

2012-09-19T20:58:00.001-05:00

I learned a valuable lesson today, at some point while I wasn't paying attention, I learned how to make good friends. I sat this morning with a friend who has recently come back into my life in an odd way. We have lived a few miles from one another for years but finally touched base again by FaceBook. We've been catching up a little at a time as there has been time but this morning must have been the day where we both needed one another.

I came down the stairs telling her about my upcoming surgery and she offered to help me. I said I would let her know what I needed and she turned and looked and me and said, "but you won't, you're good about saying you will, but you won't because you have a problem asking for help." I managed to stay on both feet without falling over from shock, she was totally right but I don't think that anyone has quite ever had the balls to come right out and say it to me like that. I want people to think I'm tough and I can do it on my own, even when that really might not be what is happening. All this time it took me to realize that people get it and they want to help, and some people aren't just saying it to hear their own voice.

It made me very thankful. Ironically, I asked a question that my friend needed to talk about, so we spent time talking over that. I got in the car to get coffee and I had this stupid smile on my face knowing that something important happened there and that I would ask for help if I needed it because even at my worst, I know I can trust my friend and a few other good friends. I feel lucky and so blessed.

That said, today has been a horrible day healthwise, I have Sjogren's Syndrome which is where your immune system attacks your mucus membranes, it runs along with RA. I'm flaring before I have my next Rituxan infusion. My mouth is dry so my lips are cracked and swollen and so sore, I look like Mush Mouth from Fat Albert...if it keeps up I will be talking like him soon. It can also effect your eyes, nose and lady bits...yup, I look like a strung out Angelina Jolie with a bloody nose that walks funny. If I put anymore liquid in my body I will slosh when I walk. It's been a miserable day and will be until next week.

It's hard to fathom how you can be so up and so down at the same moment. Life truly is a challenge and not for sissies.

I came home from running errands and buying $60 worth of mouthwash and chap stick to a message from my friend. She mentioned how much she had appreciated our talk and our friendship. I was so thrilled that I wasn't the only one who felt like something important had happened there.

So I guess even in the midst of the hell that is my heatlh right now, important things are happening. While I have lost some superficial friendships, those that I have nutured are starting to pay off. I may not have a million friends like I used to but having a few really good ones that I can count on is so much more important.

My ankle surgery just got a little bit easier. Thank you, my friend!

This Gimp Gets A Life...

2012-09-17T16:55:00.001-05:00

When I turned 40 a couple of years ago some good friends gave me a journal to write in. Now we all know I spill my guts on the internet, so I decided to write more of a bucket list in this book. I wrote my list, promptly put it in the drawer and completely forgot it for the past two years.

Today as I thought about making a few lists I needed to keep track of before the end of the year I pulled out the journal, wiped the two inches of dust off (ok, slight exaggeration...I do have a house cleaner...though she doesn't clean in my drawers, probably a good thing) and started to read my list. Imagine my surprise when I was actually able to cross about half the list off.

For someone who spends an overwhelming amount of time in bed, I managed to accomplish a lot more than I thought I had. Yay me! It's easy to feel like I'm a waste of air some days when all I do is lay around waiting for it to be time for my next allotment of meds but writing this down really excited me to know that even when life hands me lemons, I'm figuring out how to make a 4 course meal with them.

At some point, I came back and also wrote about things I had learned in the past 2 years....I don't remember doing this but had quite the giggle at a few of them....here are a few of the gems I have learned...

Sometimes you have to forgive people, even if they are assholes...

You can have an opinion, you just don't have to share it with everyone...(see how well I'm doing with this one)

I learn the hard way...

Well, at least I'm learning...even if it is the hard way. This time, I will take it as a win!!

Just Call Me Rosie...

2012-09-15T18:34:00.002-05:00

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 much nothing that will scare the pants off you quite like walking into a room with 20 patients receiving chemo at the same time.

After a few times I got to know the regulars that were there the same time and day I was. We would nod hello or have a quick chat, everyone was really as nice as could be. There was an older gentleman who would come in with a lovely woman and they would chat with everyone while they were there.

One day he showed up with what looked like the worse case of sunburn, pretty much everyone commented on it and told him how healthy it made him look, that was until he started to tell everyone that it was a side effect of the chemo that he was on and that he had been walking around with rosy red, on fire cheeks for days. I remember thinking what a total pain to have to deal with peoples comments on top of having to deal with the uncomfortable fact that for him, the situation wouldn't be changing soon.

So I've decided to count myself lucky. Yes, my cheeks are uncomfortable but in a few days when the cortisone dissipates I will be back to normal and thankful for it, I only hope this wonderful gentleman can say the same and that after all the chemo he went through that in the end he won the fight.

Being ill isn't easy and it sure isn't for sissies....

I'm Sexy and I Know It...

2012-09-12T15:40:00.001-05:00

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 upcoming surgery I was pretty upset, for a couple of reasons. !.) Sometimes when you stop taking a med it loses its effectiveness. 2.) When I'm not on meds, RA gets to play...and it doesn't play fair.

Imagine my surprise when my rheumatologist started to figure out dates this morning after I told him the jist of the situation. I looked at him a little oddly and asked, "so I can have my Rituxan before surgery? and he said "Yes!" I didn't know whether to shout out loud or pass out and fall on the floor.

We are going to move to a 5 month schedule instead of a 6 month because I am starting to flare. This will work out perfectly with a surgery schedule if I can schedule for December and the 5 month window will work with exactly how long I'll need to be off my meds during the recovery.

So, long story short...I won't have to worry about my RA eating my joints while I'm recovering. I can't even begin to tell you what a load off my mind is. To not have to suffer on top of suffering is such a relief that I did end up shouting "YES!"

Let me tell you how exciting this news is...I have been swelling a lot in my feet and I have to wear compression stockings....not even that ruined my day. I'm just going to get a short, school girl skirt and let my thunder thighs do a little Brittany Spears routine....because I'm bringing sexy back....

2012-09-11T20:47:00.000-05:00

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 my meds for my back surgery and I was miserable, I remember what it was like wearing a cast for 8 weeks and it was so uncomfortable...there was a time when my foot was so swollen I couldn't even move it in the cast, I remember what its like to be in the hospital so sick that I thought I would die when my adrenals went to hell. The thought of a surgery with no guarantee of fusion once again and all of the other issues that go with it, well...it makes me want to cry.

I'm not sure where I'm going to find the strength to get through it without either losing my mind or being the biggest bitch that scoots the earth (you know, because I won't be able to walk).

I know this sounds like a big whine, and it is but man, surgery is really hard and then having the same surgery 3 times, well, it's pretty frustrating. Last time I said I would never do it again and now I don't have a choice.

Somehow I'm going to have to get this straight in my head but right now, I'm just not quite sure how to do that....this will be my 4th surgery in 2 years, I'm ready for this to be my last one....because I just don't have what I need to get through it anymore...so I guess I'm scared and tired...

Ugh!

2012-08-30T15:30:00.002-05:00

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, between my neck and back and then going through dropping all meds to do a surgery and trying to keep my adrenals from arguing it's going to take a miracle. When I tell my endocrinologist what is going on he's going to flip his lid.

Sometimes I feel like such a huge burden, its hard to stand my own body for doing this to me and my loved ones. Today it is truly not fair....

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

2012-08-29T17:19:00.000-05:00

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 the floor (in my sleep, of course...a whole different blog post) and trying to work up the courage to actually fly to Arizona, because you know no one has managed to work that teleportation thing out yet. Beam me up, Karyn.

Traveling as an able bodied person is a total pain in the ass, so you can only imagine all the extra shit I'm dragging with. I'm pretty sure my 50 pounds of allotted weight will consist of supplements and prescription medication. The other 50 I will be dragging on will consist of aids...well, I am borrowing their wheelchair, so that's one less thing to worry about.

Packing has become a competitive sport. Can I fit my whole medicine cabinet in this suitcase, if I pack 8 ice packs and 2 heating pads will there be enough room for clothes. Would it be wrong if all I wore while I was there was boxers and tank tops (only if people can see)? And don't forget the fan I have to pack because the ringing in my ears is louder than a freight train running through my head. I have to bring smaller toiletries so I can actually pack clothes and I haven't even made it to the airport yet.

I'm pretty mobile still but there is pretty much no way I can walk an airport like O'Hare and then do a 4 hour flight without moaning in agony and making my seat neighbor want to bonk me over the head with my own cane. So I bucked up and asked for wheelchair assistance and after the world didn't stop spinning or fall off its axis (I might have fallen off my chair a bit).

I joke but this one is hard for me. My pride and ego are all wrapped up in my ability to be able to make my own way but when it stops me from seeing a good friend, I have to get over myself and make the effort to try anyway. If it's horrible, I won't have to do it ever again but if it's not, let the traveling being.

I'll be posting about my experiences and maybe a picture or two. I'm taking my fancy pink cane because if you can't do it big, you should just stay home.

Here's the most important thing...do you suppose my wheelchair handler will be cute? Damn, I should have remembered to put that on my request form....stay tuned!

Glowing the Extra Mile...

2012-08-28T13:49:00.000-05:00

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 enough to put my ego and pride in it and have enough room left over for my body. So I shuffle back to the room and then proceed to try and lay completely still while having muscle spasms in my thigh...fun times.

I practically ran out of the hospital which might be the reason that I needed to drive home without my shoe on, oops...as you might have figured, my foot, not doing great. Looks like it might have fused in some places but its still not fused all the way, which means pain...LOTS...but I'm dealing because my other options are wearing a boot for a year or surgery.

Surgery on a person with Adrenal Insufficiency is pretty much a nightmare and none of my doctors are excited about the idea (which means you can imagine how I feel about it). So I imagine we are going to do everything we can before we cut things open this time, for me this means pain and no fun.

So because I like to push the envelope and flip RA the bird I've have decided to walk in the Arthritis Foundation Jingle Bell Walk in December in Chicago. Yes, everything about this is a good idea, 5k of walking in the freezing cold with a bunch of my closest friends and a bunch of other morons who aren't smart enough to stay in when it's cold. It should be a blast...if I have to crawl it do you suppose it still counts?

Yup, situation normal. RA pushes, I push back....the votes still out who will win...

Dysfunctional Relationship?

2012-08-27T13:54:00.002-05:00

I was listening to Pink's new song named Blow Me today. It's about an end of a relationship that has been struggling for quite sometime. I was shocked to find myself not thinking about a difficult relationship from the past, I was thinking about my orthopedic surgeon.

Alright, before you guys all jump to the wrong conclusion it's not that kind of relationship. Though after seeing a doctor for over 2 years you do form some kind of weird relationship with them. If you're lucky it's a 100% love fest all around. But if you're like all the rest of us, doctoring isn't easy.

I've talked about my people not understanding RA, repeatedly. You would think doctors would get it right? Uhm, that's a negative...this is my favorite line of that song...yes, you know the song where I want to tell my doctor to blow me...

You think I'm just too serious, I think you're full of shit...

That pretty much sums up the past two years. I know that if RA isn't your specialty there is a great chance that you aren't going to have a great understanding but if you've been seeing a patient for two years it might behoove you to get a clue.

Dealing with a person with RA and the 8 other doctors they have is hard and a challenge and believe me, I understand how balancing 30 other patients besides me is a terrible pain in the ass. Guess what? I don't care. I am serious, because it's my ass that ends up in the hospital while you sit at home with your happy family.

I'm the one that takes 97 different prescriptions, has the surgeries, deals with the depression, and tries to raise a family as you politely talk around and don't answer my questions. I'm the one with the sore neck that has to decide whether going to a chiropractor is really an option. So while your playing coy and flashing your dimples, yes, I am fucking serious and I finally call BULLSHIT.

Finally, I'm done.

Tie a knot in the rope, tryin' to hold, tryin' to hold, But there's nothing to grasp so I let go

Yes, it feels like a bad break up and I'm starting over again...but it's got to hurt a lot less than this does.

Is it ironic that I am happily married and my bad relationships are with my doctors?

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

2012-08-23T14:31:00.000-05:00

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 just seem like one long WHINE. So, I decided to write...about the good and the bad. Right now the bad outweighs the good, in a few weeks I'm going to travel to Arizona and while it will be difficult and I'm scared to death, I know it will also be good...and maybe my body will give me a break for a little bit.

I'm much more positive now then I was even a year ago (yes, I heard a few of you fall off your chairs) and yes, I agree that attitude is everything. But I think being real is important too. Can you live a good life with RA? Hell yes! Will it be easy? Hell no!

So my peeps, I won't bore you to death in person, or by text or even on the phone. If you want to know how I'm doing read here. It may be hard but I'm worth it and if you truly love me you won't just stand by me during the good times but try to understand me all the time.

You Look Mahvelous...You Know, Even Though You've Had RA For 40 Years....

2012-08-22T16:22:00.000-05:00

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 surgery. I can't turn my neck because of a natural fusion. I think I look a lot worse than I used too, but thankfully not like a 40 year patient of RA.

Part of me is so thankful to be mobile and not in a wheelchair, to be able to type with my fingers and use my hands even if they have to wear splints or smell like Biofreeze, to be able to move my neck the little that I can instead of having to wear a collar.

But the other part of me that has suffered for 40 years thinks it's so visible, how can you miss it? It has changed me in so many other ways just because I can walk and move my fingers doesn't mean it hasn't affected me in a million different ways. That's the downside of this disease, it's invisible so people don't understand quite how pervasive it can be.

40 years and I look good, I just wish I actually felt as good as I look....

Who Would Chose?

2012-08-21T22:25:00.001-05:00

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. I would guess there are those that enjoy taking pain medication...

Anyone that hurts wouldn't chose this. If I could wake up tomorrow and just be able physically, the first thing I would do is pack up my family and take them all to Italy. I would travel, I would volunteer at my daughter's school. Heck, I might even run for a position on the PTO board. I would go back to school fulltime so I could train for a job so I could support myself again (even though my husband does a lovely job of supporting us now). I would walk every museum in Chicago, go on every chocolate tour I could find, take my daughter to the zoo and then finish up with a trip to Great America...and that's what I would do just during the first month, after that the skies the limit.

It's not that I don't chose to do these things, I just can't. Or if I do, I pay, dearly. Who would chose this life? Who would act like this if they didn't have too?

I miss my life. I don't want to spend every minute in pain, and then have to defend that pain to a doctor who says it isn't enough. That truly is insult to injury.

Every day I get up and I chose, what I chose is to get out of bed even though I hurt, I chose to be good to myself and my family, I chose to help those around me to the best of my ability (sometimes I surprise myself and sometimes I fail miserably, I do my best), I chose at night to hide my tears when I hurt badly, I chose to pray that God will help me through another day....

But in the end, I don't chose this...this is what I've been given, I make the best of what I have....but this is not how I want to live...I only wish I could make the people around me understand that...

2012-08-20T22:01:00.000-05:00

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 had 3 radio-frequency ablations in the past 3 years. This last one didn't work, which basically means I still hurt, a lot. My orthopedic surgeon who hasn't taken an xray or done an MRI in over a year basically told me that it requires no surgery and that I should go get adjusted at a chiropractor.

Let's just say the last time my chiropractor adjusted me he nearly broke me...resulting in the fact that he won't touch my neck. Yup, my orthopedic surgeon told me he shouldn't be scared that my neck is fused. Apparently in his free time he freelances as a chiropractor.

So yeah, that's my choice...after years of PT, 3 rhizotomies, 8 jillion epidural injections...I should get an adjustment. If only things we're so easy....

What I will be getting? A new orthopedic surgeon. One who will at least take an xray and possibly an MRI before he tells me I should scoot my butt off to get my neck cracked....

*sigh*

Are You Supposed to Just Give Up....

2012-04-17T12:32:00.002-05:00

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 injure something?

My surgeon's parting shot was "stop picking up stuff." I didn't say it out loud but I thought the day I stop picking up stuff is the day I lay down in bed and die.

So here I am with a strained shoulder and 4 more weeks of PT. Do I wish I could make that decision again, yup. Do I make stupid decisions sometimes? Yup, just like normal people do...this may be the one time I've actually done something normal...

The Things They Say....

2011-08-08T22:22:00.004-05:00

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 opinions. Telling my personal information to people that I don't even know just makes me feel uncomfortable.

Can you imagine every time I tell someone "I have rheumatoid arthritis and I had an ankle fusion" the look of confusion or horror. God forbid I mention this is my second surgery, they look at me like I have two heads.

I guess I just don't understand why my wearing a boot gives anyone the invitation to question me, even if they are just curious or trying to be nice.

My health is not my choice, this wearing of the boot isn't something that happen because I was having fun skiing and broke a bone, or I tripped over something and sprained my ankle. This wearing of a boot is because I'm in the fight of my life to get some kind of control over my health and I feel like I deserve some privacy to just live my life, even if it includes two very odd looking bone stimulators.

I've always been about education and getting the word out about RA but now that I have worn a very obvious medical device for a few years (on more than off) I just want to blend into the background.

I am so much more than the boot I wear and if you find that you want to start up a conversation could you please remember that I have a right to privacy and sometimes I just want to be someone other than the girl fighting RA or the one that has had 2 surgeries and is scheduling another one for January.

What Kind Of Person Does This Make Me?

2011-05-26T21:12:00.002-05:00

I seem to have this hang up. I stay to long in situations that are bad for me because I think the other person doesn't deserve to be able to walk away and not think about how things have gone so desperately wrong.

Yes, you read that correctly, I want to punish people. And I'm willing to drag myself along with as long as I know that I'm sticking it to them.

Case in point. Dr Angry, I believe that he did the best he could during my first surgery there were complications and who could have ever predicted that I would end up with a defective screw, or that I would fall down the steps or that my RA would be raging through all of the aforementioned things.

As time has gone by and things haven't gotten better and more decisions have had to be made that weren't to Dr Angry's liking things have become more and more tense to the point of my really having to hold my tongue when I am in a room with him.

And instead of just calmly walking away and just deciding I'm done with this situation I have spent the last few months punishing both of us, because he gets to walk away when we're done and I'm stuck in this crappy body.

And the thing is I realize how insane this whole situation is but I still hate starting over. I hate change! And there has been so much of it lately that I'm just overwhelmed with the idea of starting all over again. And come on, just once I would like to be the one that gets to walk away and say "whew, I'm glad I don't have to deal with that anymore."

Am I ever going to get to be that person? The one who doesn't need to have two back surgeries or two ankle surgeries? The one who just has something turn out like it's supposed to and it's high fives all around?

I just want people to understand how much damage they have done to me and I want it to effect them and I fear that makes me a really lousy person. Not to mention slightly masochistic.

Giving It Away...

2011-05-25T18:39:00.003-05:00

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 am. One of my first memories of dealing with my RA as a kid was when I was 10 years old. I had "fluid on the knee" and my rheumatologist was a real bastard. He told me to lay down on the table and that it wasn't going to hurt. He then proceeded to stick the biggest hypodermic needle into my knee to drain it as a nurse held my legs down.

As you can imagine that is not a fond memory. I wasn't much wanting to "do this" either. As Dr Angry was prepping the area doing figure 8's on my knee with betadyne I was doing everything I could not to panic. He joked "don't kick me" and I thought wouldn't he freak out to know that I was more worried about throwing up on him.

I have more and more joints becoming involved and I'm stuck between one doctor who says it's that doctor's resposibility and the other doctor who says the same. In the meantime I'm the one stuck in the middle.

My back still isn't fused, we'll find out about my ankle on Friday and my arthritis seems to be out of control. The one sure thing I know is that I can't handle to much more of this before I completely lose my mind.

My parents picked up Hope from school yesterday and when she got in the car she asked my mom if she had spoken to me. She said yes she had and that I was ok (she knows I'm doing a lot of doctoring this week). She turned and looked at my mom and said, "are you sure she's ok...sometimes mommy says she's ok when she's really not."

My 8 year old could see what an adult doctor couldn't (or didn't want to bother too). I hate that, I hate that my little girl gets it. I hate that she has to go through that. When we thought of having her we were concerned with passing on RA to her, it never occurred to us that my health would have so much effect on her life.

She sits by when I lose the ability to do things like cook dinner, walk to the bus stop or hold a book and notices them all. When she sits on my bed as I'm aching and says, "mommy when your body heals you and I are going to go to the mall" I wonder if I should lie and say "yup, it's a date" (and I do) or if I should just tell her the truth that I feel like I'm never going to get better.

I just want to find a doctor that is going to be aggressive and that doesn't mean 8 million surgeries or 500 cortisone injections. What is the point of living forever if I'm going to hurt every moment I spend alive? If I have to give up 10 years for a little quality time, that seems like a pretty decent compromise (remind me of that later).

So Dr Angry is going. I'm going to start with the office that I had my foot surgery through and see if I can't find a little relief with a whole less arguing and personal opinions.

So again, I start over....and I'm tired....I'm so very tired....

Shaking My Faith...

2011-05-06T13:09:00.002-05:00

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?

Seriously, If You Need to Exercise That Badly, Maybe You Should Get Your Own...

2011-04-28T16:42:00.002-05:00

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 found out that my back is nicely GROWING BONE. It would be very nice to start stretching the muscles that have become weak while I haven't been walking. Oh, did I mention I STARTED TO WALK again?

Life hasn't been easy and within the last week I have been extremely tested but I'm getting my legs back underneath me and I'm choosing to walk away from this and get on with it.

How badly do you think I can injure myself during my first bit of yoga?

The Witching Hour...

2011-04-05T17:17:00.002-05:00

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 to be the easy part and recuperating is the hard part. We all have a tough road ahead of us to get back to some semblance of normal. But hopefully that normal will not require anyone in my immediate family to be put under or cut open in the near future.

So you ask, what does all of this mean? I get to breathe again. I get to worry just a little less. I start to untangle and just relax a little bit. I've been pulled so tight just to make it through this time and now I get to let go just a little bit.

And it feels like relief....and I so desperately need that...

Uhm, Can I Get Your 411?

2011-03-30T16:54:00.004-05:00

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 wondering if he had given them my insurance information. He didn't and I didn't and what do you know, this afternoon I got a call from the hospital. I'll bet they are interested to know just where the heck to send the bill.

Wouldn't it be nice if for once I could just pick up and say "hopsital visit, what hospital visit?" Of course I will return the call tomorrow and anxiously await the damage and then pay my portion. But man, there are so many other things I would like to be doing with that money....what's that I hear calling...Punta Cana? Unless I win the lotto the only thing I will be hearing is the ring of the bill collecter calling.

Sigh...
.

Well, I Lived...

2011-03-29T18:52:00.002-05:00

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 he scrapped out and replaced with cadaver bone. I also have a 4 inch screw going through my heel up into my foot.

I have a bone stimulator and the cadaver bone also has something in it that will respond to the stimulator to give me more of a chance of fusion. If my midfoot continues to hurt after I heal from this surgery then I have to have it revised, if not, then we wait until it does become a problem and revise it then. In the meantime we pray for FUSION...in all the foot (and the back wouldn't hurt either).

I do have some good news. I won't be having surgery for at least 4 months. That's how long I have to commit to giving Orencia a try. Yes, you read that right...I'm starting Orencia in the next few weeks pending insurance approval. This is the medication I have been fighting for 2 years to try. Everytime I think about it I cry because it's been such a battle and it's finally here.

I'm optimistic and scared as hell that it won't work. Knowing something like a remission could be right around the corner fills me with so much hope I can hardly stand it...and the flip side that it could work but not as well as I'd like scares me to death. I have so much riding on this drug.

I have a new rheumatologist and SHE is awesome. Not once did she look at me like I was crazy or anything I said was anything that she hadn't heard a million times before. It was awesome. I have a lot of doctoring to do that I have put off to have so many surgeries these past 5 months but for the first time in a long time I am optimistic (though about $3000 poorer).

For the first time in a long time I don't feel as if my life is in dire need. I feel like I have a chance to have a second chance and after having a long remission on Enbrel I thought that was to much to ask for. But now I'm starting to believe that my life may not need to be surgery and pain meds for the foreseeable future. For someone recovering from the flu and surgery that's pretty darn impressive.

So, no surgery for 4 months. Everyone I say that to looks at me like I'm nuts...I'm not sure why but that is such a load off my back that I just want to take out a billboard on the expressway. NO SURGERY FOR 4 MONTHS. Can I get an AMEN!!

Mommy, Why Do They Call It The Four Seasons?

2011-03-16T17:49:00.002-05:00

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 morning and looked at the nightstand to find a bottle of Fuji water and orange juice. As I tried not to panic I asked Hope where these had come from. She said the refrigerator.

Uhm yeah, the MINI BAR refrigerator. I guess we hadn't thought to tell her that each bottle cost $4 a piece. We usually bring some water and snacks with, so we just figured she would drink those.

After we had explained the idea of the mini bar we went and grabbed the price list and were relieved to find that while $4 wasn't ideal it was a lot better than the $12 a bottle we have seen before.

So here is a lesson for you. When the person who brings up your luggage shows you the keys to the mini bar, don't look at him like he's crazy, lock that bad boy up and hide the keys. If not, you might end up owing more for the mini bar than for the room.

Thank goodness Hope wasn't hungry...she could have done some major damage....

Soon I Will Rule the World...While You Sleep....

2011-03-09T13:39:00.002-06:00

I've written before about some of my more interesting side effects from Ambien. I have yet to drunk dial anyone or come on to anyone other than my husband but I have to admit some of the things I've been doing lately are shocking even to me.

I tend to sleepwalk when I'm very stressed. I will hold it together during the day and then act out while sleeping.

(And before you all freak out on my I've had repeated discussions about this with my doctor. He told me pretty much any sleep med that I take is going to do this to me unless I figure out a better way to deal with the emotions while I'm awake. It's important I get sleep so the side effects I just need to deal with.)

So far I have slept-walked, it's always nice to wake up somewhere other than where you went to sleep.

Slept-argued, you haven't lived until you wake up the next morning and say, "good morning, honey" to only receive a grunt. It's like going on a bender without the hangover. You remember nothing but your spouse or significant other was taking notes....

Slept-ate, it's always nice when you reach for the last cookie and it's not there. Then some flashback of you standing in front of the pantry literally flashes back and you are cramming that fattening cookie you have been resisting all day into your maw. The other day I had a flashback of eating Sugar Smacks at 2am...which is NOT something I eat when awake. I'm awfully thankful I'm not a vegetarian or allergic to any foods.

Slept-watched, now I know I'm a multi-tasker but this one even had me impressed. Last night not only did I crawl out of bed to sleep-eat, I also gave sleep-watching a try. Imagine my surprise when I pulled up my Tivo this morning and found that I had already watched all my shows during the night...while I was asleep. Now who the hell got voted off Biggest Loser...

And my all time favorite...

Slept-shopped, a few nights ago I decided to spend the $12 I still had left on iTunes, while I was asleep. Yes folks, I shopped while I was sleeping. I'm so glad that I only had $12 or I can only imagine what kind of music I might have had waiting for me the next morning. As it was I bought sleep meditation music, which is probably the funniest part of this post. Even in my sleep I knew that I needed to get more restful sleep. Did I buy just one song? No, I bought a whole CD that sounds like whales mating but doesn't make me sleep.

Now all I need to do is learn how to sleep-drive...no, even I have to draw the line somewhere...how about sleep-jogging?