Check, Check , Check

I’ve been making my way down the pre-surgery check list. Every time I get one thing checked off, it seems like another item is added.

Wednesday I had a dental appointment and have been cleared.

My Rheumatologist called and said she wanted updated X-rays of my neck. It has given me problems in the past. It hasn’t happened since I’ve been on steroids for the last year and a half, but it used to get stiff and stuck in place. It got so bad I couldn’t swallow food sometimes. She wants to make sure it will be ok if I need to be intubated.

This morning I went to the joint replacement seminar the hospital makes everyone attend before their surgeries. There were five of us. All woman. I was the only one under sixty. The very end of the seminar was a bit of a blur for me though. I had taken some pain medsso I would be able to even make it to the room, and I only managed to get down half a cup of yogurt before my stomach rebelled. I spent the last twenty minutes with a very nauseated stomach. I just sat there trying not to puke. Every timethey were about to let out one of the ladies would start chatting about goats and other such things. The bile finally decided it would be held back no more and I popped out of my seat and was out the door faster than I had moved all month! I heard one of the woman say ” I guess the class is over. She just got up and left!”

I can tell the care in the hospital would be great. The bathroom was down a very long corridor and a nurse asked me if I was ok. I told her I was going to be sick. She grabbed a wheelchair, sat me in it, wheeled me to the restroom and waited outside with crackers and a cup of water. Very very sweet. I was so embarrassed. Stupid pain meds. There was no other option though. It has now been over a month without Enbrel or methotrexate.

I had almost forgotten how far along I had come withthe drugs. I had almost forgot what it felt like to be at the mercy R.A. with no meds. After this surgery, I don’t ever want to go without again. Lol.

Tuesday I have an appointment with my Rheummy to get cleared by her. She will have to check out the Xrays.

Wednesday is the cardiologist. Then I will have to pre-register a week before the surgery. So it’s looking like it will be the 13th.

I’m beyond excited. The seminar freaked me out a bit, but only because I’m terrified of hospitals and Iv’s and needles. Ugh. But other than that, it’s on.

P.S. I want to thank everyone for the comments and encouragement.  And if anyone else has surgery advice to offer, please leave me a comment. I’d love to hear from you.

Soon….

I watched my friends leave tonight to go out. I, like always, stayed behind. Maybe this will be one of the last times that happens.

Nothing has ever been worth the pain that can accompany me when I have to go out. I’ve missed dinners, and holidays, and birthdays, and graduations.  I always make an attempt to join in on my better days, but for the last year or two it has been rare.

Sometimes I think back on all the things I’ve missed and it’s so hard to try and stay positive. My friends have all moved on. They’re graduating college, getting married, moving across country, and just having fun. Im sitting here dreading a trip to the bathroom because those thirty or so steps are going to be excruciating.

I dont care what the risks are. I would give ANYthing to have these new knees. I would literally give anything. To not feel this constant-never-leaves-you pain will be a miracle.

There hasn’t been a single day in the last four years that I haven’t felt it. This surgery is going to be the best thing that has ever happened to me.

This one hurt

I really didn’t want to do this, but I need to take a little time to respond to this last comment someone left me.

                   Sorry, but you are wrong. I remember the first time I saw someone suffering with RA. I remember it as  clear as day. It was in Los Angeles 35 years ago. I was taking a report from a lady who had it real bad in both knees. I saw her suffering and it went right to my heart. It was one of the strongest feeling of empathy I had experienced up till that time. It hit me physically and emotionally so hard I was taken aback as though I had been struck. Even thinking of it now I have the same feelings. I am looking for the person who wants to be proactive because you either sit and feeling sorry doing the same things that got you sick in the first place or you take action. I am not talking about going to a doctor and taking medication I am talking about making changes in what you are doing. There is something you are doing or something inside you that brought this on and it has to be undone. Every disease can be cured it is not about the disease it is about the person. 3 kinds of people who cannot be cured are 1 does nothing, 2 likes to be sick, 3 it is their time God is coming. Everyone else can be cured even cracked pots, they just need the information on how.

This is the stuff that you have to put up with if you are sick in the world.  This is the EXACT thing that I have been blogging about for a year now. People who like to tell you all the things you are doing wrong. If you would only do this or that. I’ve had just about all I can stand of it.

This man has taken it upon himself to judge me and my situation. He has made quite a few false assumptions.

Assumption 1: Im not proactive about my disease. I sit and feel sorry for myself.

Assumption 2: I do this while doing the things that got MYSELF sick in the first place.

Assumption 3: There is “something” inside me that I’m not doing right. It’s MY FAULT

Assumption 4: I am one of the following types of people. A)I am doing nothing about my situation B) I actaully ENJOY being sick C) It’s just the way things are because God is coming to get me

Assumption 5: He has magic information on how easily I can be cured.

If I only cared enough, right? So he believes there are magic alternative herbs that with fix everything. Let me guess…. he makes a living selling them, right? He has to make money off it.

He claims he has sympathy for R.A. sufferers. But I think he doesn’t know the meaning of the word.

I am so tired of people like this.

R.A. is a horrifically nasty, brutal, painful disease. But what is MORE hurtful, and MORE painful, and MORE brutal is people like him judging me and people like me. He doesn’t know me. He doesn’t know anything I’ve been through. And he has no right to boil my entire life and disease down to such a silly silly conclusion.

Sometimes things just happen. Sometimes people get diseases. It isn’t because they are bad people. It isn’t because they wanted it. I feel( not that it actually matters apparently) that bad things sometimes just happen. I personally feel that to think otherwise is a bit self indulgent. And a bit arrogant.

I don’t need to justify myself here.

But for God sake, if you are reading this, try not to do this to anyone else. Trust me, it isn’t helpful.

It’s hurtful and cruel. And you might be sincere and concerned. But it’s not coming off that way. It was like taking a punch to the gut. That there are actually people out there that can think and say such a thing to another human being.

Yes

I had an appointment for a second opinion with another orthopedic surgeon today. And he said yes!

I was completely prepared to fight for these new knees, but I didn’t even need my arguments. He was in complete agreement.

It shouldn’t be long now. I have to be cleared by my rheumatologist, my dentist, and a cardiologist. Everyone thinks it’s odd that a dentist has to ok knee replacement surgery, but he just has to make sure I don’t have any infections, or abscesses. I was able to schedule an appointment for tomorrow. The soonest I can get in for the cardiologist is next Wednesday.

My doctor only does surgeries on Mondays, so there’s a chance that if I can get my paperwork done quickly enough, it may happen the 6th.

I’m very excited. I’ve been in a lot of pain because I’ve been off my meds for a few weeks. But its nice to know that in a few weeks, I’ll finally be getting some relief!

Without my knee pain, I think I’ll find R.A. a much more tolerable disease. No picnic of course, but no longer hell on earth.

ANYways, Ive been doing my research on total knee replacements. Makes me a bit queasy thinking about it actually. I never am very good with the whole blood and gore and bones and needles thing. I’m actually fairly nervous, but I know it will be a good step.

I am going to have my left leg done first. And if there are no complications, then my right knee three weeks later. He said that doing them both at the same time increases the risk of infection by thirty percent. And that with my medications, R.A., etc an infection would be very very bad.

They explained all of the risks involved. It seems a bit daunting, but really, I think I would be willing to do just about anything for these new knees.

Rheumatoid Arthritis and Religion II

 

Ok, I’ve broached this topic a few times in the past.

Religion and Rheumatoid Arthritis

So there are these people in my life who every time they see me, cant help but offer me platitudes on the struggles of the soul in regards to illness. They offer truly thought provoking philosophical insights into the questions such as ” Why does God lets bad things happen?”.

Um- Ok, so I exaggerated. What usually comes out of their self righteous uneducated mouths is something along the lines of…

“Hey, ya know if you’d jus’ trust God a bit more, he’d sure heal you up just lickety split.”

“I’m real sorry to hear ‘bout you gettin’ turned down for surgery. But if you’d jus give for to God, he could heal you”

“Pssh, what do them doctors know anyhow? All a bunch of thieving’ crooks if you ask me.”

Me: “Yea. But wouldn’t they make more money if they actually did the surgery?”

“Yea, well they’re just so darn lazy, ya know?”

I get emails from my best friends mom. I know she does it because she loves me and it’s the only hope she can offer, but it’s just frustrating to me. It always comes back to the fact that I’m only sick because I’m not doing something right. I don’t trust enough. Or I am just not a good enough person. I am an example for everyone else on how not to be.

It’s funny, because off all the many religious people I know, I haven’t done the following:

( I’ll even just stick with the preachers, chaplains, youth leaders, and preacher’s wives I know.)

I haven’t done drugs.

I haven’t slept around on a husband or wife.

I haven’t blown 400 dollars a pop on coach purses from the tithes of the congregation

I haven’t treated my entire family to a trip to Hawaii on the tithes from the congregation.

I haven’t paid for a new car from donations.

I haven’t spent time in jail for theft.

I haven’t stolen money.

I haven’t had a baby out of wedlock.

I don’t drink and act like an idiot.

I haven’t turned my back on someone because they didn’t believe exactly like me.

I can manage to accept people for who they are and not how I think they should be.

I don’t tell a sick young woman that they must be sick because they are a bad person.

And they have the nerve to talk about me. They have the nerve to tell other people that I could have gotten that surgery if I had even bothered to attend services.

I am the only one out of my many religious acquaintances who has actually lived a moral life. Yet, I am the bad person.

I know there are many many religious many who are wonderful and do good things. I just don’t know very many.

Now we wait

I dropped my medical records and X-rays off to another doctor. He wants to look them over to see if he even wants to bother seeing me.

If afraid he’s going to take one look at that file, see I’m 24, and say no.

I don’t like the feeling of having the course of my life and future in the hands of a stranger. Or anyone for that matter.

And apparently second opinions are tricky with my insurance.

What if he wont even see me? Or sees me and then says no. Will my insurance even pay for it if I manage to find someone else? I’ve had a knot in my stomach all day. Now I have to wait until they call me.

Oh, and in the medical records, the last doctor wrote that i showed signs of scoliosis?!

I’ll just try again

Ok. Now that I’ve managed to drag myself out of bed and stop the crying I’ve a bit of progress today.

Im going for a second opinion. I made an appointment with the doctor who did one of my close friends replacements. She was only nineteen at the time.

I understand the reasoning behind waiting, but at this point its just a matter of quality of life. The surgeon said my knees were bad enough to warrant surgery. Its just a matter of me being too young.

To be honest, I cant make myself care about what will happen in the future. All I know it that I can not keep going the way I am now. I cant. Eight months of physical therapy hasn’t worked. My therapist said if I was older he would tell me to give up. Which is ironic since the surgeon said if I was older he wouldn’t give up.

I’m twenty four. I want to finish school. I want to have a career. I want to date and socialize. These are the years I need to be pain free. Not when I’m sixty. I cant sit around in this apartment rotting away until I get old enough to have surgery.

I just have to be more aggressive with the next doctor. I sort of just sat there in shock on the last one. I made some attempts to make him listen but he wasn’t having it. I’m just going to have to make the next one see.