Hope Floats....

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?

Switch....

2011-03-07T15:42:00.002-06:00

My mom had ankle surgery 3 weeks ago. She was told it would be a very simple surgery and unfortunately, it hasn't been.

Last week she called me up crying and just basically beside herself with worry. You see, our lives are in a very unusual state at the moment. My mom had ankle surgery in February, I will have ankle surgery in March and my dad will have a knee replacement in April. As you can imagine the urgency (let's call it what it is...PRESSURE) for her to heal is really got her freaked.

In fact, I can't remember a time when I've ever heard my mom more upset. It scared me. I'm the kid, still raising a kid. I'm allowed to freak out when surgery is beyond my control...and believe me when I say I do...often.

But my mom is pretty much a rock. She usually calms me and gives me good advice and I appreciate it about as much as anyone would appreciate advice when they are FREAKING out.

Case in point, after my back surgery I had a difficult time in the hospital. She came and visited me. When she got there I told her that I changed my mind and didn't want to do this anymore (hello, drugs?). Instead of laughing at me (which is what I probably would have done) she assured me that I could do it and that I should start to eat and help myself. A few weeks later we had a good laugh about it.

I'm the one that freaks out. So imagine my surprise to find myself in a different place...handing out the advice while trying not to piss off the person freaking out is a lot harder than I ever thought it would be and a heck of a lot more scary and worrisome.

I was the mom of my MOM! And the mom of my daughter. And it felt like just a little too much mom at that particular moment. I'm not ready to have parents that I need to parent, hell, I barely feel like a parent most of the time. I'm not sure how to make the right decisions for myself much less the best decisions for my parents.

And yet, my mom got in the car today and she said, "I listened to the boss." I almost fell over when I figured out that she was actually talking about me. Somewhere in that mumbled jumbled up mess, I had given some good advice. Some helpful advice...and I was shocked right down to my core.

I have had a chance to be on the other side a lot in the past few weeks and I have to say it's a lot harder than I thought it would be and I'm not ready.

And then I went to Dr. Angry today with my mom. She is seeing him for some shoulder issues. And yes, he is still Dr. Angry....which makes me very sad. He made some snappy comment today about us and my mom jumped right up and defended us all and very politely put him in his place and all was right in the world. Mom was back in charge. I didn't have to look like a jerk but I also didn't have to be punished for my choices.

So I guess the moral to the story is my life is changing in ways that I didn't quite appreciate until recently. I feel kind of like the filling of the Oreo cookie lately. Between helping my parents and helping my family I'm stuck in the middle. Now I just have to remember sometimes I will be stuck to one side and sometimes the other...but I am capable and I can do this.

Does anyone find it odd that I just referred to myself as lard....

Seriously?

2011-03-04T14:59:00.002-06:00

Well, my life is nothing if not a study of contrasts.

Last week I was using a cane and bought two more so I would have one for the car and one for both upstairs and downstairs.

Today I received both canes by UPS....I haven't used a cane since I ordered them.

If this is a way to bring on remission. then I think next week I'm buying a walker and a wheelchair...

The Bonerator...Part !!!

2011-03-02T20:18:00.002-06:00

So I've got this bone stimulator...and I have to wear it for 4 hours a day. It's not uncomfortable its just kind of ungainly. When I sit, it just kind of doesn't fit in my lap...so it makes 4 hours seem kind of like 4 years.

Thankfully I have a wonderful side effect, it makes me barfy...what do you suppose the chances are? It also makes my RA hurt (not surprising since I'm using it to combat the Enbrel I'm taking.)

So I fiddled with the timing and figured out I can wear it for 2 hours a day without making myself sick (odd, I know...but I have to wear the thing.)

I leave it on my desk when I'm not wearing it so I can charge it. Usually it's right where my cat Luci likes to lay. I'm pretty sure that I have written about Luci (her full name is Lucifer), she's a little devil. The other day she was laying on the desk so I put The Bonerator in the chair.

About five minutes later I'm watching her wrestle with The Bonerator, she was pulling on it and jumping all over it. Eventually she managed to drop it out of the chair...and even managed to get caught up in it so she looked like she was wearing it.

And then amazingly, she managed to turn it on. So yes, for a minute or two that day my cat wore my bone stimulator for me. If I had caught that on video I would be a millionaire....or at least have a million hits on YouTube...

Do you suppose my back doctor would think it was acceptable if I had Luci wear my bone stimulator for me?

The Bonerator...Part II

2011-03-01T13:17:00.002-06:00

You can probably imagine the different things that people have called my bone stimulator.

When I first got it I thought it looked like a cat. I put it on, took a picture and put it up on FaceBook. Imagine my surprise when everyone came back and asked me is that your robot? They called me ET, space man and just about any other thing you can think of...it was odd. I started to wear it in the privacy of my own home so I wouldn't get any other weird comments.

My favorite was when I was talking to my girlfriend about it and she wasn't sure what I was talking about. I said, "K, you know the picture that I put up on FaceBook?"

She looked at me and said, "Melissa, I thought you had just decorated your corset. I didn't realize that was your new bone stimulator...."

When we got done giggling about that I told her if I had decorated my corset there would have been a lot more glitter and a heck of a lot less robot face....

The Bonerator....

2011-02-28T14:05:00.003-06:00

This is my back after my first surgery. See that loose screw there? That gave me bragging rights to a lose screw for 4 whole weeks.

After all of my screws were tightened and in the right place my ankle started to really hurt. The kind of pain that makes you seriously consider cutting limbs off. I went for a few xrays and found that their might be some question if my ankle fusion had actually fused. By this time I had already been off Enbrel for almost 12 weeks due to both surgeries and my back surgeon worrying about infection and my back not fusing.

Enter my bone stimulator. This is my bone stimulator and my corset...aren't you jealous?

As you can imagine I've gotten quite a few interesting comments which I will share with you in my next post.

In this post I wanted to tell you about the sales rep that brought it out to me. I was lucky enough to have a neighbor put up both of my Christmas trees. The sales rep came in and pulled out the stimulator, showed me how to use it and then told me how long I had to wear it. 4 hours a day...

When we were done, she gave me the box and said, "Hey, you have all your Christmas trees up, you can take this box and put it under your tree and give yourself the gift of bone for Christmas."

I was good and didn't burst out laughing until she had gone. Seriously? The gift of bone? I told my girlfriend and we had a good laugh over it and henceforth we have called the stimulator The Bonerator...

For all the picking on I take for this thing, I sure hope it does it's job and gives me the gift of bone. If not, I'm going to have to give it the gift of my middle finger...

Tune in tomorrow to hear more of the silly things that The Bonerator has been called...

We All Freak Out In Different Ways...

2011-02-27T15:34:00.002-06:00

Have you ever met just a good person? I have a chiropractor like this. He's just a really nice guy, he remembers exactly how many days its been since he married his wife, he always has a smile and a kind word and you can just tell that he's upwardly mobile and going somewhere...not to mention he just found out his wife is expecting. He is just really a joy to be around because life just hasn't kicked him in the shins enough to make him bitter.

I went to get my hair colored today. I decided that I was going to have a few pieces underneath dyed purple (ok, they turned out mahogany but I still likey). I have a hair stylist that is just good people. She's Type A and not only does she do hair but she goes to school for nursing.

When I told her the last time I saw her that I was freaking out about my health and thought about dying my hair purple she told me that I wasn't freaking out I was expressing myself. She makes an awesome stylist and I'm sure will make an extremely caring nurse.

Today I went in and brought her up to date on my health situation which she always asks about and listens to. After a bit of whining on my part she asked me "what's positive in your life?"

I'm pretty good about usually having a carrot out there that pulls me along. I was shocked to stop for a minute and think that I had nothing to look forward to. I quickly thought to myself that I needed to find something...it's going to take a little longer because traveling is out for now.

It took quite some time for her to bleach my hair, color my roots and then dye the underneath purple and we had covered about a zillion topics by then. As she finished drying my hair she handed me the mirror and spun my chair around and said...

"There's your positive...."

And you know it was. I thought the color was about freaking out but it was actually about taking control. I don't get a lot of ways to act out and I often don't get to be in control of what happens to my body but this...I have total control of...next month it won't be mahogany, it will be PURPLE!

So this week I will be looking for the positive, posting about my bonerator...and the circus that is my new laundry room.

Thank you to all the people like D, and Dr C. you make me better....

Just Call Me Gullible....

2011-02-25T14:20:00.002-06:00

I had an appointment with my foot surgeon today to check in and make sure all the last minute stuff was where it needed to be and that all my questions were answered.

I've been having some problems with my left foot feeling like I'm walking on rocks in the ball of my foot.

I told the doctor about it and he picked up my foot and said, "Oh my goodness, there really is a rock here."

I looked at him with big eyes and said, "Really?"

At which point he looked at me and said, "No!"

After I finished laughing at myself I thought how gullible can one person be? I've looked for rocks in my socks for the past few weeks.

Now if I had found a wocket in my pocket, that would have been quite odd...

Stupid Doctor Moments From This Week....

2011-02-24T11:57:00.002-06:00

I fell down the steps this week. Needless to say a few of my doctors needed to be updated so we could make sure everything was pretty much where it needed to be. These are two of the sillier conversations I had at my doctor appointments.

Doctor: How many steps did you fall down.

Me: Uhm, sorry...I didn't think to count them as I was falling down them...I fell from about the middle of 15 steps.

Joe told me that the next time I fall he expects me to call out the steps like The Count on Sesame Street as I bounce down them.

"One, one step I've fallen on...Ha!Ha!Ha! Two, two steps I've fallen on...Ha!Ha!Ha!

Overheard at my physical therapy appointment.

Physical Therapist: Well that's two steps backwards...

Me: No, actually I think it was about 7 steps down...

I think this might have to be a weekly post...

Under Pressure...

2011-02-23T17:05:00.002-06:00

A few weeks ago I stupidly sat in an office and made a promise I couldn't keep. I promised that I would take the time to let my back heal and not have another surgery for 6 months.

I didn't say those words with the idea that weeks later I would be taking them back...believe me if I could not have another surgery for 6 months I would happily go along living my life and trying to heal from the emotional and physical whirlwind I've been dealing with for the last 4 months (has it only been 4 months, it feels like about 4 years).

Now I can't honor that promise and the person that I made it to is unwilling to listen to my reasoning so I thought I might write it down here and it would help me to remember that my choice counts and that maybe I'm not making a mistake by going ahead with the surgery.

Hope has been having a hard time, she's struggling and she doesn't quite get what's going on. She understands that Mommy is sick but doesn't quite understand the gravity of the sickness. In her head she still believes that some day Mommy is going to have surgery and then come home and be fine.

Needless to say after Joe tucks her in at night she has been wandering out of bed and into my room for a little extra snuggling time and just to make sure that I'm ok.

The other night after she came in and we snuggled for a bit she asked me if I would tuck her in. I got up and found that there just wasn't one more step in my foot. I hadn't asked Joe take the knee walker out of the attic yet so I didn't have any other choice but to crawl into her room with her. I got down on my hands and knees and crawled as Hope walked beside me.

As we moved into the upstairs family room she said, "Mommy, I'm going to jump on your back and ride you like a horsey."

I sat down and explained to her that she couldn't get on my back and that there were just screws holding things together and that I was still healing from my surgery. She looked at me and shrugged her little shoulders and skipped into her room.

I sat on the floor and watched as my daughter tucked herself into bed (she has a loft bed) threw her a kiss and crawled back to my room where I proceeded to wonder what would have happened if she had been like any other 8 year old and would have just taken the moment as play and just jumped on my back without warning me first.

56 pounds and 4 screws would have made for a disastrous outcome. That was when I knew not only did I need to get my knee walker out of the attic but I also needed to get myself fixed so my daughter doesn't have to see her mom crawling around the house.

I'll never get the chance to explain this to the person that I made a promise to, his faith in me is broken and that bothers me because I'm usually pretty good about my word being good...but I guess even I have a line and when I have to chose, my daughter will always come first.

Losing My Religion...

2011-02-22T15:42:00.002-06:00

For some reason I think doctors walk on water. Maybe because I deal with so many of them...maybe because they can cut peopleopen and not kill them, maybe it's because I feel like they have all the answers that I'm scrambling so hard to find.

I guess in my head, white coat = a person who is invincible and is never wrong.

As you can imagine, I'm often disappointed when I find out that doctors are people just like me...except for the $150,000 school loan (and you know, the 12 years of education).

Yeah, I got my answer today. My back surgeon is mad at me.

This weekend I fell down the steps. One minute I was good and the next I was bouncing down the steps and trying to grab a hold of anything to make me stop (and no, I didn't count the steps on the way down...who knew I was supposed too). I managed to land right on my back, right where the incisions were. I also banged up my elbow pretty good though only one bruise...(I scraped it down the banister, I was sure that I had left a layer of skin behind but thankfully, no).

So back into the doctor I go to make sure all the hardware is still in place. I wasn't horribly concerned that things were out of whack but I have a heck of a backache so I wanted to be sure.

Everything was good and in place. It only took about 2 seconds for Dr Angry to ask when ankle surgery was. Needless to say the conversation didn't get better from there. I asked for a steroid injection in my thumb so I can use my cane, he said no, he said a few scary things about having the surgery and then asked if I wanted pain meds...

By this time I was just done, I could have stayed at home in bed and just taken my chances and had less grief.

It's so hard to go against a doctor that you really respect. It's so hard to know that my doctor is angry at me and it's really hard to make this choice without him but I'm the one walking around on these feet. I'm the one falling down the steps and crawling around my house and scaring the hell out of my husband and daughter.

I don't want to have this surgery...and I would never have another one if I didn't have too. If I could go back and change my decision to have the back surgery I would in a minute but I don't have the luxury of these choices. I have to be able to walk because being in a wheelchair is not an option.

So why can't I just go ahead and have the surgery and just shake off that Dr Angry is angry with me? Why do I feel like every option I have is a bad one? And why does Dr Angry's choice matter more than mine when I have to live in this body?

I'm so tired of being punished by my doctors...I just want them to fix me and then leave me alone...

You Can't Handle the Truth...

2011-02-17T16:25:00.003-06:00

The past few weeks I've been talking with my therapist about separating a bit from my parents and doing things on my own. As a side item, one thing my shrink wanted me to do was to let my friends know "how sick I am."

I tend to tell my friends a lot about my health but I don't really tell them when I'm wearing a boot, or using a cane or that my foot hurts so much lately that by the end of the evening I'm crawling around the house on my hands and knees.

As you can imagine the need for ankle surgery has again been brought to the forefront. I scheduled it for March 17th. I casually mentioned to my neighbor that things were getting difficult and that I had added the boot and cane back into the mix and then threw in the crawling around the house. She took it well and it just didn't seem like a big deal. So I just thought, ok...it's no big deal. This is just all part of the disease of RA...this is my life, this is my normal, I can do this.

So I've made changes, I'm doing PT to strengthen my upper body and shoulders, I'm wearing a bone stimulator for my back and I'm taking B Complex vitamins to bring up my iron levels (even though it tastes like sucking on rusty nails), I'm even eating meat several times a week...and I'm in control.

I even went to my back surgeon to get a shot in my hand for trigger finger from my cane (yes, I know it's weird to go to a back surgeon for a hand but I am going somewhere with this so hang with me.) So imagine my surprise when Dr. NiceGuy sticks the needle in my hand and I mumble that I'm having surgery and he asks why? And I tell him because I have to crawl around on the floor every night, like it's no big deal, and he hits the roof.

We all know that I have a tendency to become attached to my doctors and the flashing lights went up immediately. I couldn't tell if he was angry with me for going ahead with the surgery when I said I wouldn't or if he was afraid I was going to mess my back up...then I heard him mutter something about he helped this situation along by my having to have the second surgery on my back and that he is still angry about that.

It was the crawling on the floor that upset him and I'm walking around thinking that crawling is ok, because in my head I need to think I can do this. And I finally realize it's not about being attached to a doctor it's about being attached to how sick that doctor thinks I am. And right now, I need this doctor to tell me that I am ok...and he's not....

If the people around me tell me I'm ok, then I believe them...even if I am crawling up the steps. If the people around me tell me I'm in really bad shape, I lay down on the bed and feel sorry for myself and die.

I took a break from writting this and just came back and read it...and from everything I've written above I feel like I'm just overreacting and feeling sorry for myself. Could it be the person I've always wanted to be, the person that handles illness with grace is finally me?

Or could it be that my perception is so sku'd that I don't even realize that crawling on the floor is not normal and I should be more freaked out about it?

This disease and the emotions that go along with it is hard. Just about the time I feel like I've got a handle on things then someone else comes along with their baggage and its like slogging through it all over again and finding the happy medium.

My doctors appointment ended with him leaving the room, walking into his office and slamming the door. I'm not sure if he's angry with me, himself, or a little of both. Unfortunately, tonight as I crawl along the floor or up the steps I will realize how not ok this situation is...somehow I'm not sure he did me a favor....

I'm A Gezzer...

2011-02-15T20:32:00.001-06:00

So this week I needed to buy a new pair of black pants. I'm not shopping much due to my ankle issues so I decided to run over to Old Navy and pick up a pair of chinos, in and out.

I told Hope that I was going over...

She looked at me and said, "Mommy, did you say you were going shopping at Old Lady?"

Ouch....

Payback...Well, You Know What It Is...

2011-02-07T16:00:00.002-06:00

I pick on my doctors quite a bit. I've been known to be funny, witty and downright obnoxious. Luckily, I have found most of my doctors have a pretty good sense of humor.

Today I got my payback.

I was sitting with my chiropractor getting my shoulder taped (kinesotape...it works awesome, ask your PT about it). We were talking about shoveling snow and how Joe ended up doing two driveways and hurting his back.

Dr. Adorable (he is, I just want to pinch his cheeks) looks at me and says, "did I hear you right, did you just say you shoveled TWO driveways?"

I looked at him and laughed and said, "no, that was Joe I was talking about."

He said, "good, if not I was going to have to smack you upside the head."

Touche...I think now he only has about a million more smack downs to put on me until we're even...

Just Call Me Fred!

2011-02-06T15:54:00.002-06:00

So we had 3 extra days off school this week due to snow, needless to say it was a difficult week around here.

Take one sore mama and add one bored 8 year old and it equals a lot of chaos in a house not quite big enough for the two of us.

I went out with a friend the other day and told her that Hope's attitude was getting difficult to handle. I told her by 8:30 I was ready to change my name because if I heard Mommy one more time I was going to rip my face off.

She looked at me for a second and then asked...was that AM or PM?

Which was really funny because at 8:30am I'm still in bed...

I swear if this attitude gets any worse I'm going to start digging a tunnel in my back yard and hibernating through years 9 to 18...

Why Yes, I Did Get My Driver's License From a Cracker Jacks Box...

2011-02-05T14:27:00.002-06:00

I'm sure everyone knows by now that we got whacked with snow. I think all totaled we got something like 20 inches. The drifts are a good three feet high, some closer to 6 feet.

Joe had to go out and shovel by himself because I am gimpy. By the time he got down to the end of the driveway the snow was easily over 3 feet deep. So our driveway ends in kind of a v. It's two car lengths at the top and a little more than one car length at the bottom.

Due to a couple of back surgeries I haven't been driving since October. I started again about 3 or 4 weeks ago but last night was the first time I had driven at night. As you know, dark makes everything different when there are 6 foot snow drifts.

So when I'm backing out of the garage I'm thinking I need to swing to the left and then I hear CRUNCH! And I'm thinking awe hell, what did I run over. Then it hits me, I hit a snow drift. I had already closed the garage door so I pull forward trying not to hit it. I throw it into reverse and try again. It took me 3 times to get out of the driveway, serious swearing commences and I think there was frustrated waving of my fist at my husband who was in the house.

If you had been my neighbor you would have been looking out our window laughing your ass off. By the time I actually managed to get out of the driveway all I wanted to do was go back in the house and have a drink and relax.

I went out to dinner with a friend and told her the story and we had a good giggle about it. I mentioned that it was garbage night that evening and I wondered if I was going to have to run the garbage can over to get into the house.

Uhm yeah, I'm psychic. I pull in and manage to swing wide. Thank goodness. My husband, bless his heart decided it would be a good idea to place the recycling next to the garbage can leaving me a whole whopping 3 inches to get my car into the driveway. I had pictures in my mind of me dragging the recycling bin all the way up the drive and into the garage with me.

They say we are going to have these drifts for quite some time and I suppose after awhile I will probably get to be a pro at backing out without taking out a snowdrift or two...or leaving my bumper in the front yard but for now, I think I'll just drink a hot toddy and tell the hubs that I can't leave the house because I've grown attached to my taillights and side panels...