Prayers and all good things for Rocckyd | Arthritis Information

Good morning all...

Starting to feel a bit more human today.  I still can't believe the swelling that came with this surgery.  I guess anytime it affects the face it is more obvious as well-can't really hide that area.
So, we got to Richmond early afternoon on Monday.  We took our time and stopped for a HUGE lunch at Chili's-yummy. Got here and checked in.  My parents took care of the hotel bill and got us a suite.  4 days add up-this was very helplful of them.  We then headed out to the mall(of course).  Wandered around and then headed to the Cheesecake Factory for dinner.  Double Yum!  Stayed up playing boardgames and watching TV.

So, bright and early Tues-rise and shine.  Hospital is almost in walking distance so I think we rolled out of bed at the very last possible second. Everybody there was very nice.  Once again, I am unusal so I had a ton of people come by to ask questions.  I truly can't just seem to get that this is an unusual case.  I think-unusual for my town, or my part of the state-not for everybody.  I have absolutley no problem answering questions for people who are really interested.  Two med students requested to sign in.  I kinda felt like an episode of Grey's Anatomy where they all wait in the corner for their chance to jump and get the "good surgery".  Hey...is being the good surgery a compliment?

For the first time, I have no recollection of being in the OR pre-surgery.  Usually I remember something-at least a conversation.  I asked the Dr. and he said that he "slipped" me something early due to the number of people that would be in the OR.  I've had a ton of smaller surgeries as you know, but this was a bigger deal.  Not that I really cared...just wierd.  I get nervous, but I also find it all fascinating as well.  He said he'll leave me a bit longer next time if I want.  I just kinda like to look around and see what's up.

Obviously the next 6hrs were a bit of a blurr....Cue crazy music and swirly colors....

Surgeon is very happy with how stage one went.  He came out and talked to my friend for about 20min in the waiting room.  I really like this guy-very personable.  My friend likes him too.  She said he was one of the only surgeons that even came into the waiting room-much less to take the time and have a real conversation.

As I mentioned earlier, I have 4 tiny screws above and below the gumline.  You can't see them, even if I smile.  But..they really hurt.  When I woke up, my jaw was banded shut with rubber bands.  The screws are there as anchors.  I had to have a CT scan Tues. evening.  This is to get the pics needed for the joints to be made.  Now it's time to wait.... June isn't that far-ok, yes it is :(

When I went up to the room after surgery, it was just me.  Around 2am a little old lady was brought in with an "unidentified" infection.  This did not make the surgeon happy.  He had planned on holding me in the hospital until at least Thursday-mainly for pain and inflammation control.  I was out of there by Wed. afternoon.  He was just not comfortable having me there with any sort of infection.  He gave me his cell phone number and he has called my friend regularly to check in.  Would much rather be here anyway...nice big comfy bed, TV, no vitals every 30min...

So...here it is Friday.  We will be heading back home today.  My friend then heads back tomorrow.  I have a ton of books and movies to get through.

It does seem wierd that I don't have a complete jaw anymore.  Hmmm...I finally get two silicone implants-just not where I would want them :)

Watching Lifetime Movie Channel and TLC.  Stimulating entertainment.  I can even hear the cats snoring!

Hopefully tomorrow will be better...Not leaving the house or going to mass.  My parents have Nathan so he will attend.  Easter will be spent much like today.  I am trying to follow drs orders as much as possible.  He said 1/2 his patients go back to work after stage one.  I need to be in that half.  Luckily, next week is spring break so it buys me time.....

At least they are picking meds I have taken before...Well not the tamoxifen....

Well...just got back from the ER..

Really no big deal.  I just needed some fluids.  Surgeon said that he expected I would need some "help" at some point during the next few weeks.  It's painful to swallow with all the inflammation. It's like the muscles of the throat don't really work, and then motion of the TMJ hurts-good times!  ER dr. also changed my pain med.  I see a pain dr. who is wonderful.  Most of you know, you sign a pretty strict contract when you attend a pain clinic.  He trusts me-I haven't given him a reason not to.  Anyway, pain dr. said whatever the jaw surgeon prescribed would be fine.  This is where I was probably a bit stupid.  In the hospital, I was on a PCA pump.  When discharged, I told the dr. that my current pain meds would be fine.  I would just take them every 4-6hrs instead of "as needed".  He asked if I was sure, and I assured him I was.  For a bit it was ok-you still have the pain meds from the surgery and the hospital in you.  But these last few days have been rough.  Yes...I should call the surgeon.  But, once again, I feel bad.  He is on a "college tour" with his son for spring break.  He did give me his cell number, I know that means he is expecting me to call.  I'll call tomorrow and give him a heads up on what is happening.

I don't know why I get so hung up on the stigma associated with pain meds.  It's my own pride causing me pain.

So, ER dr. sent me home with dilaudid.  I see the pain dr. Friday morning and then off to Richmond for an afternoon jaw followup.  ER dr. was impressed with the amount of swelling.  Of course, he has nothing to compare it too..since I am the only wierdo to have this crazy surgery!!! 

You guys are right...I know.  It took me years to take what I was prescribed pre-surgery. 

Exhausted...but home...

Surgeon was fairly happy with how things looked.  The left side looks great...rt. side still alot of swelling. He took an xray and the silicone block is still in place.  So...told me to go home and alternate heat/ice and take it easy still for the weekend.  He said that I can go to work on Monday...it's truly a comfort issue.  He did say in a "perfect" world, I would be able to stay home, but-'nuff said on that. He did say that from now until June it's a watch and wait game.  Any excessive swelling/pain/fever needs to be reported at once.  He watched me program his cell phone # into my  phone(I had it on a piece of paper..not good enough).  He did say that most paitents he would see weekly, but the drive would hurt me financially due to time off.  So, I see him again in 3 weeks and see Dr. Kevorkian here inbetween.  He did say that if the inflammation on the rt is not down by Wed to call him.  He would send me to Dr. K and possibly order a CT scan to doulbe check block placement.  He did say that it can't be too far off right now-it would be visiablly obvious. 

I did ask him what the joints looked like.  I always wonder if the surgeon gets in there and goes..."Well shoot, joint looks fine!".  He said it was very odd-the two sides were totally different. I asked him if that was normal since RA is supposed to be symmetrical but he maintains that you can never characterize a RA joint.  Anyway-lft. side totally dry..no fluid and bone was growing to bone-bony ankylosis.  Rt. side-lots of fluid and tons of scar tissue-fibrous ankylosis. I asked him what would have happened if he hadn't gone in and he says that within 5yrs I would have probably been down to a 10mm opening due to bone growing to bone. He completely gives credit to Dr. K for recognizing the problem, not doing excessive surgeries, and getting this joint replacement in  motion.  Does make me feel good about my docs...  Dr. Z invited Dr. K to come up and help with the joint replacement.  Hmmm...we could carpool :)

I asked him about the second surgery.  He said it should be about 2hrs shorter-4hrs most likely.  He has already gone  and cleared out all the junk and shaped the remaining bone.  He did say there would be an additional incision under the jaw line-kinda near the chin.  He did say that he has a plastic surgeon close this and scaring will be very minimal.  He is very sure this especially after looking at the incisions I have had in the past.  Once again-at least one night-much of it depending on pain/swelling.  And, as we learned before-roommate.  He did say that I should plan on staying in the area for 5 days...just like this one.  Hospital/Hotel would be the only question.  Once again-he also said that he only does 2 or 3 of these a year so he isn't assuming anything.  He said that I can try to schedule on Monday so I'll shoot for June 14th.  First day of summer break.  I go to the beach for a week starting July 17th so I want to be in some shape for fun.  Very restricted diet is fine-but pain needs to be better.  He did say that he isn't happy about a week off pt but that I deserved a vacation.  He did ask if I would be able to take a pic of the joints and email/text to him so he could hae a visual and that wouldn't be a problem. 

So...needless to say I am beat.  Hoping the get the swelling down on the rt.  Just finished heat-will switch to ice.  Dr. Swanson-pain dr-upped the percocet to 10mg.  I told him I didn't need the dilaudad any longer.  He cautioned me about work on Monday.  I normally take 7.5mg of percocet and have for years so it doesn't affect me anyway as far as being "loopy".  He wants me to increase tonight so I have 3 days of an increased dose.  I've been on pain meds for so many years due to chest wall inflammation(breathing is necessary) that I am very med tolerant.  So hopefully this increase will provide needed relief-but not make me "out of it".  If it messes with me this weekend he said to call the office Monday morning and we would brainstorm.  I didn't want to up the patch cause I am hoping this med increase is temp.  It's easier to bump back down on the perocect than to mess with an increased Fentanyl patch.  I currently use the smallest dose possible and really want to keep it that way. Still on the dexamethasone(steriod), which I am not happy about, but Swanson does not want to mess with any meds until the surgeries are done. 

Ok...zzzzzzz 

Thanks for all your kind thoughts.  Really going to try and do as little as possible.  Plan now is to have Nathan come home after dinner on Sunday so it will just be cuddles and bedtime.  Man I miss that kid!

Good morning all!

Today is the last day before work...Where on Earth did the last two weeks go?  Crazy!

I don't want tomorrow to be such a "shock" to the system so I am trying to ease into having a regular day today.  My beloved Washington Capitals(what was that...#1 in the NHL?  High Scorer?  Best Hockey team ever!) play the last reg. season game today @12.  So, I'll be heading up to my parents to watch it with my caps crazy kid.  Then during nap my mom and I will watch a movie.  Basically I'll just hang out up there all day.  Function without what has become my daily nap, but help with Nathan if I need it.  They'll feed him dinner and I'll bring him home.  The slight increase in the percocet has helped.  Of course-I haven't been back to hormone central(middle school) yet.  Surgeon really said it will be day to day until this is all done.  The librarian (bless her)has offered to take my classes tomorrow.  We are studying viruses so she found a great Ebola activty(never thought you would see great and Ebola in the same sentence)that they will do.  I'm going to use the time to type of a few sub lesson plans that can be kept in the office.  That way I don't have to stress about what to do if I'm out.  9 times out of 10 it is less stressful to go to work than to plan for classes if out.

You guys should see my calender on my phone...nuts.  I have PT 3x a week which fills it up.  Combine that with my other appts and Nathan's soccer-almost everyday has something. I had to make an eye appt. for this week as well.  You all are well aware of the eye issues.  It sounds weird, but my "blinking" is a bit slower.  You can't tell, but the eyes can feel it.  Combine that with the sjorgren's and the eyes are not in good shape.  As the swelling goes down, the nerves and muscles will recover so it won't be a problem.  Now-freakishly dry-which of course opens the door to everyhing else.  I have chronic iritis and get scleritis a few times each year.  So, stopping by the good old eye dr. so he can take a look before it gets worse.  The PT is what causes the most stress timewise.  My PT is on the other side of town so I have to run out with the kids.  I always feel like I am leaving something unfinished on my desk.  Of couse, I also drive by at least 4 other PT offices on the way.  But, 1-the PT has become one of my best friends, and 2-very few people do TMJ therapy.  Well, they say they do-but they are just reading online and finding out info.  My pt has spent the equivalent of hours on the phone with Dr. K, and has gone to multiple trainings since this has begun.  She's going to watch stage 2 in June.  Hey...anybody else want to come-I might put tickets on ticketmaster if I get enough interest! Still, it feels like I am always rushing to get somewehere.  I am blessed with good friends who are always willing to help out.  I'm going to pick up an extra booster seat today for one to have at her house.  She had me add her name to the pick up list at daycare.  Her kids are much older 15 and 12 but are great with Nathan.  He calls her daughter his "old girlfriend".  So, on the days I have a later PT appt, she can get him.  Afterschool care closes at 6.  You would think that this is late enough to get things done-but I cut it close on PT days.  One less stress...

Anyway, going to spend the day with my favorite smelly sweaty stinky little boy.  Aren't they the best kind :)  He called me yesterday cause he scored 2 goals at indoor soccer practice against the "big graders".  Anybody not in K is a big grader.  He is playing U8 and is one of the youngest. Those crazy 2nd and 3rd big graders!  He learning so much and has become quite tough.  Good thing as I don't think he will ever be really big.  His soccer shorts are size 4/5 so It's good to learn how to handle the bigger players now.  Anyway, he was so excited but it made me realize how much I need him back to home.  As much as I hate to say it, he will probably spend the night with my parents tomorrow.  They are planning on picking him up to allow me to go home after PT and just "crash" since it will be day one.  Don't know if this is the right idea, of if I need to just suck it up and keep going thru the day like normal and have him home.  I did write up a long email and sent it out to everyone.  They all knew what was happening over break, but this will hopefully prevent the zillion conversations that happen in the hall.  I already found a picture of a cabbage patch kid that looks like me. I'm going to put it on my ActivBoard for the kids to see when then come in  Hey-you gotta laugh in this situation.  Hopefully the explanation at the beginning of each class period will be enough.  I figured I would type it up and put it on the same frame as the patch kid.  They can read it and then ask questions. They also knew I was having surgery but they were around for the one in Dec. as well.  I came back looking normal from that one so I know they will have questions regarding this one.  They were concerned before break.  Lots of hugs and notes on my last day.  I tell them they are just worried about who their sub will be!

Go out and eat some crunchy food in honor of me...yum yum!