ActemRA Update

SUCCESS!!!  Sort of lol.

Actemra is working, for the most part, and I'm doing better than I've been since before going off of everything to start trying to get pregnant, and I've even been able to start a moderate, very low-impact workout regimen here at home.  I'm not doing as well as I did when first on Remicade, but I'm also not on my max dosage.  And that is the part of all this that has been a success.

On the "sort of" side of things, my liver enzymes are being stupid.  By that I mean they keep going up.  They aren't at "oh-my-god-stop-everything" levels yet, but it's definitely something that is concerning enough that Dr. C is continuing blood work monitoring every 4 weeks.  Additionally, he has decided to keep me at my current Actemra dose until/unless my numbers come back down.  Or, at the very least, stop going up.  The other "sort of" is that I am still on methotrexate, and Dr. C is not overly optimistic about me ever being able to stop taking that little brat of a drug.

All that said, I'm still feeling cautiously optimistic about Actemra.  I'm doing my part to try to get those pesky liver enzymes to come back down by cutting down my alcohol consumption--which I know I'm not technically supposed to enjoy anyway.  I normally don't have more than, say 5 drinks in a week; however, now I am trying to cut back to only 1-2 drinks a week.  So far I've been successful!  Additionally, in the trying to increase the effectiveness of my current Actemra dose, I've been refocusing on my weight loss efforts.  I'm trying to be more aware of what and when I eat, making the choice to be more active throughout the day, and by engaging in the aforementioned workout regimen (courtesy of Fitness Blender) in an attempt to boost my energy level, lower my stress level (sans wine lol), and, of course, lose some weight.  Daniel and Kelli, a husband-wife team of professional trainers, make and share free workout videos.  They also sell workout regimen PDFs organizing their videos according to specific health and fitness goals.  The one that I am following cost about $5 and is a 4 week low-impact workout routine meant for both beginners AND for people with health issues.  Hey look!  I'm both of those lol.  Anyway, they are very big on proper form, listening to your body, and working out according to your individual ability--all of which are attitudes that I would expect and require of in-person personal trainers.  I'm enjoying it so much that I'm going to cancel my gym membership--saving $42 a month--and I'm already seeing results after only a couple of weeks!  Suffice it to say, I'm very pleased with my $5 purchase.

For the immediate future, I'm going to continue to implement these health changes as consistently as I can, and hope that my pissy little liver calms down.  Ideally, I will be able to get on the larger dose of Actemra in the coming months and see even more improvement!  Fingers crossed!

ActemRA

Well, my Remicade is crapping out on me.  It has been slowly losing effectiveness for several months now; however, within the past two months, that process has started to accelerate.  My rheumy let me know that we should start looking at other options back in October, but I just couldn't let go of the hope the it was just a lull in effectiveness.  January and February disabused me of that hope, and March and April have only clarified the need to try something else.  After looking at the options my doctor presented, I'm about to start Actemra this week, provided that all the insurance stuff goes smoothly.  It's an IV infusion, like the Remicade, only much shorter, lasting one hour instead of 3.  It also targets a different part of the immune response (IL-6), and so, hopefully, will have a good chance at succeeding where Remicade has failed.  So, it looks like I will be starting my 4th "big boy" drug--methotrexate, Enbrel, Remicade, and now Actemra.  

I'm scared.  And feel silly for being scared.  It's not like this is my first drug switch, or even my first IV or biologic medication.  The side effects are basically the same as Remicade, with a few new rare ones thrown in, just to keep things interesting.  I seem to be an ideal candidate for success, according to both my independent research and my doctor's opinion.  I guess it's just that whole "fear of the unknown" thing, combined with the fear of failure.  I'm tired of drugs ceasing to work, and it scares the hell out of me that my body seems to burn through them much faster than normal.  Enbrel was supposed to be effective for 5 years--I burned out in 2.5.  People stay on Remicade for 10+ years--I'm switching after a total of less than 4.  Granted, that might be due to going off of it for the pregnancy and then trying to restart it again, so, my bad, I guess lol.  Not something I regret even a little bit, even now that I'm facing another switch.  I would just really like Actemra to work, work well, and work for awhile...and so I'm scared it won't.

The good news is if, worse case, Actemra doesn't work, or stops working, we still have a couple of other options on the table, and more options are being developed on a yearly basis.  Hopefully, the speed of medical advancement will surpass the rate at which my body adjusts to the current drugs.  At some point, I'll probably have to become a guinea pig, so to speak, but I keep holding out hope that day is pretty far in the future.  Kind of like the possibility of ending up in a wheel chair or the reality of a future elbow replacement surgery--I'm planning on putting that shit off as long as possible.  After all, what am I, if not the queen of procrastination? ;-)

Anywho, on the upside, going on Actemra means there's a high likelihood that I will be able to STOP methotrexate all together, and seeing as I wanted off that med even before I started taking it, that's enough of a bright spot to help dispel the encroaching gloom of another failed drug.  So, hooray for Actemra!  Here's hoping you prove my fears to be unfounded, and my particular pain-in-the-ass case of RA to be no match for your medical might!  

And so, my journey with RA continues.  Time to take the next step, and start making phone calls to ensure the bureaucratic paperwork part goes smoothly.  Wish me luck!

Writing Again

As I'm sure most of you have noticed, I have been doing an extremely poor job of keeping up with this blog.  In part, it's because I have a very active 11-month-old.

However, the major reason is that my hands have not been doing well.  Dr. C and I are still trying to get my rheumatoid arthritis in line, which means, of course, that my hands have good and bad days. I try to save my good days for playing with the baby, and so this blog gets neglected.  Fortunately for me, I have an awesome husband! Bryan figured out how to set up the voice dictation software on my computer and bought me a nifty headset that allows me to speak what I want to write!  This saves me a lot of time, effort, and especially saves me a lot of pain in my hands.  Hopefully, this means I will do a better job keeping this blog updated!

Beyond the updating of this blog, I am very excited about another specific opportunity this setup presents.  You see, I have been a writer my entire life.  I have spiral notebooks, folders, computer folders, and even a Trapper Keeper full of story ideas, dating as far back as elementary school.  However, for years, this blog has been my only outlet for that passion.  Why?  The answer is simple: my rheumatoid arthritis has taken away my ability to write or type for any length of time. This blog, with it's short, simple format, is pretty much all I've been able to manage since college. There have been several posts in recent years that have taken me multiple days to complete.  This means that all those half-formed, partially started stories have languished unattended and unfinished for the better part of a decade.  Heck, there are even a few completed stories somewhere in there that need to be edited and fine tuned!  Now, I am not saying that all of these ideas are necessarily good ones; however, amongst the notes, outlines, and half-started stories, there are one or two ideas that I feel truly have potential.  I'm excited that this setup will allow me to revisit these ideas and perhaps turn them into something, even if that "something" is never read by anyone other than myself.  At the very least, it will be a chance to actually finish all of the half-stories floating around inside of my head. It's getting kind of crowded up there lol!

Because it has been years since I last wrote regularly, I'm sure these first few attempts are going to be pretty atrocious.  In the past, the very fact that I might write something horrible would have deterred me from starting to write again; however, at this point in my life I'm excited even about the bad stories I'm going to produce!  Part of that excitement comes from my husband's enthusiastic support and encouragement. He is almost as excited about my starting to write again as I am!  More than that though, by taking my hands out of the equation, I will be able to reconnect with a part of myself that I had feared lost, and re-employ a skill set that I thought my rheumatoid arthritis had rendered inaccessible.  It is yet another way to refuse to allow my chronic illness to define, limit, and control my life.  And who knows? Perhaps someday I will craft a story worthy of actually being read by someone else!

And if not, at the very least, this setup will allow me to both write and save my hands for making wonderful memories with my daughter, and, of course, for knitting!

(JIP: Jackalope In Progress!)

Life Catch Up!

Well, the Caylee Catch Up post tells much of what I've been up to the past couple of months. :-)  It's been an absolute blast!  Fortunately for my sanity, however, I do have other things going on in my life other than the many joys of motherhood!

For example, I am definitely still knitting!  I haven't gotten to knit as much as I would like, but believe it or not, that has little to do with the munchkin.  My RA is tending to get the best of me when it comes to my hands.  We--and by we I mean my doctor:-)--are still trying to get my meds back in alignment.  Dr. C warned me that it would take time after my pregnancy to get everything straightened back out--I just naively assumed that "time" meant a couple of months after starting my meds back up.  Turns out, not the case lol.  It gets frustrating some days, having to choose what I'm going to spend my spoons on--but since most of those tend to go to cuddling and playing with my little girl, it's not as frustrating it could be!  Eventually, we'll get the RA under control.  The question is whether my current combination of drugs will be the answer.  If not, we have a plan of action, but I'd really rather the Remicade get it's act together and get to work!

Other than that, the 20 mg of daily prednisone I was on during my pregnancy seems to have had the unfortunate side effects of throwing me into Cushing's Syndrome and insulin resistance.  I'm shopping for a good endocrinologist at the moment, but have made an appointment with a Dr. C that a friend highly recommends.  I've had excellent luck with my current Dr. C, so I'm hoping the letter is lucky!  Both Cushing's and insulin resistance are treatable, and I'm currently taking metformin for the latter.  I hate metformin almost as much as I hate methotrexate--possibly more--but if it controls the situation enough to keep me from developing full-out diabetes, I'll deal with it.  In the meantime, I get to check my blood sugar and try to avoid bottoming it out...which has happened a couple of times.  Not fun, not fun at all, just in case you're curious.  Here's hoping the next endo I see can help me understand what's going on and get it under control.

I've also read some good books lately--City of Dark Magic by Magnus Flyte being the most recent.  Reading helps keep my mind active, as opposed to saying "Yes!  That's a red block!" and agreeing with Caylee's latest cooing sounds.  While fun and adorable, not exactly mentally stimulating lol.  I'm also trying to speak Spanish to Caylee for at least one hour a week, just to keep in practice, and I'm learning Japanese!  Why Japanese?  Well, I've always wanted to learn it, and I have access to plenty of anime to practice listening to native speakers.  Also, we were planning a trip to Japan this fall, which we ended up having to cancel in order to replace our truck when it cratered.  That was pretty disappointing, but at least now, by the time we do go, I'll hopefully be fairly proficient!  I have a friend who speaks Japanese, and so does her mom, so I'm hoping to practice conversational skills with them, once I've learned enough to have conversations.  Right now, I can greet and comment on general weather conditions--I think I need a bit more lol.

Bryan, Caylee and I have gotten to hang out with Ethan and Julie and Lucy.  The adults played cards and the girls just played.  We also got together with Jake and Alicia--who are expecting a little boy in April!  We went with Lindsay and Ben to the paint pub, and Lindsay and I also had a girls' night at a local sushi place!  Julie, Alicia and I had a girls' lunch with Caylee and Lucy!  Bryan and I  have also enjoyed a few child-free weekends just the two of us, while Caylee visited her Ganma and Grandpa (my parents).  It was great to spend quality adult time together as well as with our friends, going out, having some drinks, watching movies, going to a paint pub and getting projects done around the house.  It's always fun getting to spend time with your best friend!

In the next few weeks, Bryanne-Michelle is coming in, as are Victoria and Philip!  We and Vic and Philip are going to Vic and my 10 year high school reunion, where we'll meet up with Kim and Clay!  That same weekend I'm also hosting Alicia's baby shower!  Lots of fun stuff coming up!  And that pretty much brings us up to date on what's up with me!  

Caylee is waking up, so that' my cue to fix her dinner!  Hopefully I'll do a better job of keeping up with this now that I've gotten started again!

Back in the Habit

And no, I'm not talking about the Whoopi Goldberg movie.  Though I did watch it on TV the other day, and had forgotten how much I actually enjoy it!  Yay Cinemax!

Anyway, what I'm talking about is my weekly injection habit.  I took my first methotrexate shot in almost two years on Saturday night.  Bryan and I decided Saturday nights are the best time because we almost always have something going on Saturdays and almost always have nothing going on Sundays.  This means when I'm feeling less than awesome the day after my shot, he can help me with the baby!  I have such a good hubby :-).

While I'm glad to be officially back on my meds, I honestly had forgotten how yucky the methotrexate makes me feel.  Saturday night was pretty bad--mostly nausea and feeling woozy--and I was pretty wiped out on Sunday.  Bryan took over the baby's night feeding on Saturday so I could go to bed extra early, and was a huge help taking care of her all day Sunday.  I'm feeling better today, especially after 2 cups of coffee lol.  Of course, it's been completely out of my system for quite some time--I'm sure that once it's reestablished itself, it won't hit me quite as hard.  I'm just very thankful that Bryan is so understanding and takes such good care of me and of Caylee-bear when I'm feeling so icky.

The other habit I've restarted is Weight Watchers!  I haven't been to a weigh in and meeting yet, but I'm officially tracking my points again, and hoping that I'll see some progress, even if I'm still on 20 mg/day of prednisone.  I'm going to talk to Dr. C on Thursday about the protocol for weaning off that dose--not that I'm going to be able to actually attempt that anytime soon.  Until my big girl drugs get to work, that and my NSAID are all that keep me functioning though, admittedly, they're not really doing an amazing job at that at the moment.  But that's why we're reintroducing the methotrexate and Remcade and hydroxycholoquin--hopefully I'll see more improvement this time than back in 2010! 

Other than that, I'm looking forward to getting back into the exercise habit; however, I'm just not to a point where I can do that yet.  With my first Remicade infusion this Thursday, water aerobics will have to wait at least another week.  It might have to wait even longer, depending on how I'm responding to the meds, and going on walks will have to wait even longer than that.  That said, this beautifully cool fall weather sure makes me itch to put the baby in her stroller and go for a, well, stroll!  Oh well.  Hopefully the meds will make it possible before it gets flat out cold outside.

All in all, I'm feeling fairly optimistic and empowered (weight watcher word lol) at the moment.  It sure feels good to restart my healthy habits!

Family Fun!

Our Caylee-bear turned 6 weeks old last Thursday!

Aside from being excited that she's growing so big and strong, we were excited for another reason: 6 weeks was the age our pediatrician said we had to wait to take her out!

Granted, I cheated and took her to the yarn shop at 5 weeks, but that was just a quick "mommy and me" trip to see a very small group of my knitting family members all of whom were healthy.  Here's a pic of Caylee with her big sis (and birthday twin!) Blair :-D!

At 6 weeks, we took her out to a public place with--*gasp*--strangers we didn't know present!  Lol.  Bryan and I decided to celebrate her (and our) 6 week milestone by having lunch at one of our favorite restaurants--Jason's Deli!  So, I got Miss Caylee all dressed up in a new outfit.  It's hard to believe, but she's already wearing 3 month clothing!

We loaded her into the car and went to lunch at about 1:30pm.  While it was a late lunch, it turned out to be perfect timing since we missed the weekday lunch crowd!  Jason's Deli was pretty empty, so Bryan and I snagged a booth near the back corner.  He had his Club Royale and I FINALLY had my turkey wrap!  After 9 months of abstaining, man did was it delicious!  Of course, we also had the free ice cream :-D.

Caylee did wonderfully!  On the way there, I sat in the back with her, and she seemed to enjoy that.  At least, she didn't fuss at all with me back there, so I'm assuming that was enjoyment lol.  She fell asleep halfway there and slept all the way through our lunch!  She woke up when we left and fussed on the way home, but seeing as she had a very wet diaper when we got back to the house, I couldn't really blame her!

No shoes?  No problem!  Lol.  

It was a wonderful first family outing!

This week has been Bryan's first week back to work.  He's been going in for half days to give us all a chance to transition slowly.  So far, it's been going just fine, though Caylee and I are both glad to see him when he gets home!  Next week will be the final transition of him going back to work full-time and Caylee and I continuing our routine here at the house without him--at least until he gets home in the evening!  It'll be an adjustment for all of us, but I know it'll end up being great!

Other than that, we've got a busy week this week.  Saturday morning is Caylee's Halloween mini-session with amazing photographer Carina with Kat's Photography, and I'm super excited!  Carina also did Caylee's newborn shoot, and she is extremely talented!  

As for me, I have lots of doctor appointments that I'm getting out of the way while Bryan's home in the afternoons--optometrist, dentist, etc.  My 6 week postpartum check-up is tomorrow, so hopefully I'll be back on methotrexate and hydroxycholoquin tomorrow as well!  I'm getting ready for knit night tonight--sans baby this time!  Saturday afternoon, I'm taking a magic loop class at PAY, and am looking forward to it.  Oh, and I rejoined Weight Watchers!  Since I can't run--or even go on walks at the moment--and I'm not yet cleared for water aerobics, it's time to attack this baby weight from the dietary end!  I had a lot of success last time, and am looking to repeat it!  So, wish me luck!  And hey look--another blog post!  Thank goodness for a wonderful baby who sleeps so well--mama still gets to enjoy her hobbies!

RA and Motherhood

As I've already mentioned, to get Caylee here safely we opted for a C-section.  The upside--at least for me--was a fairly easy recovery.  Of course, never having delivered a baby vaginally, I have nothing to personally compare it to; however, the C-section recovery was about what I expected from a major abdominal procedure.  That is, the recovery was annoying, inconvenient, and somewhat painful--though of course the wonderful pain meds helped with that last bit lol.  The downside was that it has postponed my restart of my RA medications.

Even more of a downside, for the last week and a half I've been dealing with my first post-pregnancy flare, which has been a doozie.  Luckily, the prescription strength Ibuprofen from my C-section combined with my 20mg a day of prednisone seem to be keeping me at least functioning.  Of course, that's when I remember to take my middle-of-the-day Ibuprofen.  For example, I forgot today and am severely regretting it tonight.  Soon though I will be back on my once-a-day Meloxicam with the prednisone, so hopefully that combination will tide me over until I get to start the big boys.

There are a few hoops for my to jump through before I get to start the rest of my drugs back up.  First comes my MRI this week.  This is sort of like a baseline for the post-pregnancy condition of my joints.  Of course, it's also a way to measure how much damage I've managed to do by being off of my meds since November of 2010.  Should be interesting!  I also am probably going to have to get more bloodwork done--as always lol.  Of course, last week, the tests saw some slight elevations in a few areas, so I had to do a repeat on Friday.  Since I haven't heard anything this weekend, I'm assuming no further issues showed up, but I should get a phone call to confirm that either Monday or Tuesday.

After that, the next step is to get my postpartum clearance from Dr. F.  That will be next week.  I don't foresee any issues with that appointment--I seem to be pretty much healed up.  And if I haven't been taking it as easy as I should be, at least I haven't been vacuuming or lifting objects heavier than Caylee.  In other words, I haven't done anything the doc needs to hear about, unless she detects an issue on her own!  Lol.  The day Dr. F clears me, Dr. C will call in my methotrexate prescription and I'll be back to my weekly injection.  I'm not looking forward to that AT ALL, but I am looking forward to a month or so down the road when the drug reestablishes itself in my system.  At that point, hopefully I'll see some improvement!

Finally, there's my insurance company's prior approval process for my Remicade infusions.  We're billing it differently this time, which should help with the financial end of that medication.  It's amazing what you can learn about your insurance when you have the time to call and chat with people about something you read in your policy!  There shouldn't be any issue with getting approval, so we went ahead and scheduled my first infusion appointment for the week after my postpartum clearance appointment.  In around two months, I should start seeing improvement from the Remicade establishing itself in my system.

Until then, I'll keep on keeping on.  Bryan's been a big help during this flare, as always.  I'm so lucky to have him!  That said, I'm looking forward to getting this nonsense back under control.  Believe it or not, it hasn't been anywhere near under control since the Enbrel stopped working during my first year of teaching.  So, here's hoping this drug combo will do the trick!  And of course, hooray for the end of my prednisone usage FINALLY being in sight.  I hate that drug, as much as it does the job.

So anyway, that's where things stand RA-wise.  Wish me luck in regards to the MRI--unrealistic as I know it is, I'm still hoping that Dr. C tells me there hasn't been any progression!  Hey, a girl can dream, right? ;-)  For now, I'm going to go enjoy my last bit of evening with my hubby and baby girl before I head to bed.  Gnite!

Pregnancy: 22 Weeks and 5 Days

I cannot believe I'll be 23 weeks along this Saturday!  That's more than halfway through this pregnancy!  Especially since we're going to induce sometime in August, since I'm considered double whammy high risk.

And yes, that IS a medical term lol.

So far, everything continues to go smoothly.  As I mentioned in my Menu Planning Monday post, I'm finally able to cook again, which has been really nice!  Don't get me wrong, I did enjoy my hiatus from the kitchen for a bit; however, I do enjoy cooking, and four months was a pretty long break!  I still have super-smell, but it's like the smells don't affect me as negatively as they used to...which is wonderful!

My RA hasn't responded to the pregnancy at all.  I'm taking 20 mg of prednisone a day, which basically lets me function as long as I don't overdo it.  Anyone care to guess how often I overdo?  Because it's waaay more than I should lol.  Anyway, I know a lot of my friends and family (and doctors) were hoping that I would get some pregnancy-caused relief starting in the second trimester.  After all, 75% of women with RA see some sort of remission.  I, however, am not at all surprised that my RA is not following the expected path.  It has seldom played ball in any other respect, so I really wasn't hanging my hat on the hope that it would this time.  That all said, the prednisone helps, and so does my wonderful hubby, so it's all good!

Other than that we continue to get the house ready!  I have a great local carpet cleaning company here today, cleaning the downstairs carpet and tile.  Oh my gosh, my carpets were SO DIRTY!!!  They actually changed colors as the guys worked.  Of course, that makes sense, seeing as we've been here for 3 years now (when did THAT happen?!?) and we've never cleaned the carpets.  Bryan and I painted the nursery a couple of weeks ago, and all the main furniture has been ordered, so those are some big check marks off the list.  Today, I'm upstairs with the pups cataloging donations and watching TV while the wonderful carpet cleaners work.  I figure I'll have them come back out to do the upstairs sometime in late June or July...that way it's freshly cleaned before we bring Caylee home!  And of course, that cleaning will mark the end of the pups' upstairs privileges lol.

Speaking of, little Miss Caylee continues to grow bigger and stronger every day!  Bryan and I have already preregistered for her delivery at the hospital, and we're signed up for a hospital tour/birthing class and a childcare class.  Those aren't until June--I wanted to do them sooner, but they ran out of room.  Speaking of running out of room, I've been feeling Caylee move for about the past two weeks, but this week she has really ramped up her efforts to make her presence felt!  She was so active the other night that she actually kept me awake after one of my many pee breaks!  I love feeling her kick and punch and move arounds--Bryan says I get a huge smile every time she does.  Sometimes the strangeness of the sensation sends me into giggle fits...it's the coolest sensation ever, but also one of the weirdest!  I can't wait until she really starts kicking the crap out of me...that way Bryan will get to feel her too!  We go back in next week for a check up and ultrasound...possibly our last Caylee sighting until she's in our arms.  I can't wait to see her again!!!

So that's the basic update rundown!  Now, I think I'm going to get back to cataloging...or maybe take a nap.  ;-)

frustRAtion

Hello everyone!  Sorry about that...two weeks is a pretty long between-posts hiatus.

It's been a fun two weeks though!  My cousin Gina and her three came in for a couple of days, and we had a blast.  Then the next week, my cousin Carol and her husband Calley and their two boys came in for 5 days!  We had such a good time with them.  Bryan took them on a tour of NASA, we hit the neighborhood swimming pool (it has slides!), made a day trip down to the beach, saw Rio at the dollar theater (GREAT movie!) and caught an Astros game!  The Astros lost (of course), but the fireworks show after the game was excellent.

This week is the first week this month where we don't have someone coming to stay with us!  July has been, and will continue to be, quite the busy month!

***Warning: What follows is a vent.  I know I'm normally upbeat about the whole RA thing, but today I'm having trouble kicking my perspective back into gear.  So, I'm writing.  Feel free to stop reading here :-)***

I really wish that was all there was to this month--people coming in, getting to spend time with family.  However, I'm apparently caught in the flare that never ends.  I keep calling it a "flare" because the only other term that would really apply is "regression" and I HATE that word.  Regardless of its 10 letter composition, it's still a four letter word in my book.

My right wrist is pretty bad off.  Once again this morning I can barely see my wrist bone through the swelling.  Of course, that means that my entire right hand was feeling left out and decided to join the party.  For some reason, my feet decided to join in as well, especially my left one.  With my left one this flared, I distribute my weight differently on my foot, which means that this morning my left knee decided to start complaining.

Other than the knee, all of this has been going on for a FREAKING MONTH.  Which means I haven't been taking walks, and haven't been going to water aerobics.  Hurting and being stuck in the house in a pretty big bummer, so I haven't really been doing the Weight Watchers (hello, my name is Kristen and I am an emotional/bored eater), which means I've gained some of my weight back.  Which makes me feel wonderful, let me tell you.

On top of that, a friend of mine just got diagnosed with RA two months ago and calls me to vent and for advice.  I don't mind that at all--I'm glad that my experiences can benefit someone else.  

HOWEVER, she has a crappy doctor  and won't change because she doesn't want to hurt said doctor's feelings, AND she's gotten it in her head that her disease symptoms are only appearing because she now knows she has RA PLUS she randomly decides that her pain and swelling is the fault of her medications and STOPS TAKING HER DRUGS.  

First of all, RA is a progressive disease.  Once it shows up, it's here to stay and it WILL GET WORSE.  Second of all, SCREW hurt feelings--you need a good doctor with something like this.  Thirdly, she needs to give her meds time to work, get new ones if they don't, and realize there is NO CURE so the meds aren't going to "fix" everything.  Finally, if the meds were causing the symptoms I'd be happy as a lark because I'm off of everything.  The frustrating thing is, no matter how many times (and it's been a lot) that I tell her all this, a week later, I'm getting the same spiel.  I hate seeing a friend get diagnosed, but even more I hate seeing her NOT LISTEN and make decisions that are going to hurt her long-term prognosis.  Hopefully, her case won't turn out to be as extreme as mine, and these stupid decisions won't completely screw her prognosis.

On top of all of that, today I'm hurting particularly badly (see above about my knee), so I'm having to sit.  

On the couch.  

All damn day.

When I have plenty I need to get done before this weekend.

Oh, and did I mention I'm still not pregnant?  And that I go to see Dr. C (my rheumatologist) next Thursday?

I was really hoping to be pregnant by the time I saw him again.  Granted, once you figure in the time for going off of my meds and then the time for everything to regulate after going off of the pill, we've only really been trying for 4 months, but I was really hoping.  

Barring that wonderful event, I REALLY did NOT want to go see him as flared up as I am right now.  All that will do is open the door up to the Fertility Options OR Back on Your Meds discussion that I really want to avoid.  So, I'm going to be a good little gimp girl for the next week and hope that all of this settles down sufficiently so that Dr. C is fine and dandy with giving us a bit more time to try on our own.

Now that I've gotten out everything that is frustRAting me at the moment, here's what I'm thankful for:

Having the ability to be on disability...

Victoria might be coming to stay next week...

We're having dinner with Mark and Alicia tonight...
 It rained yesterday and looks like it will again today...

I get to see more of my awesome family this weekend...

and most of all...

I have an amazing and wonderfully supportive husband who loves me and whom I love with all my heart!

Adjusting

I feel as if I'm standing at the beginning of the rest of my life.

I've been here several times before.

When I went off to college, it was thrilling to be on my own for the first time.  There was an unknown and unlimited amount of people to meet, things to do, paths in life to travel.

When I studied abroad in Spain, I regained my sense of self after quite an extended separation.  I fit into my skin once again.  There were still challenges ahead, I knew, but I felt as if I could overcome anything.  Once again, life was filled with possibilities and hopes.

When I married my husband, I married my best friend, my soul mate, and the love of my life all rolled into one incredibly handsome package (if I do say so myself ;-D).  Our life together has been and will continue to be an adventure.  I remember standing by his side as his wife, and thinking that together there was nothing we couldn't overcome, nowhere we couldn't go.  I still believe all of that--my being on disability has just put a few more challenges in our path for us to hop over.

Today is another such day.

It's not a grand occasion, as were the above.

It's simply a Tuesday.

But still I feel as if the future stretches on ahead.

This time, however, it's taking some work to view this feeling with my usual optimism and excitement.

Being declared disabled was a shock.

Living with that declaration has been a great deal harder than I had expected.

Though there were many things that I disliked about working in the field of education, I loved teaching.

I loved working with my kiddos, I loved teaching them Spanish, and I loved being able to give them advice when they came to me with problems.

I loved trying to teach them how to think.

I had a definite purpose.

Now, my purpose lies in keeping the house clean, planning meals, cooking dinner, etc.

I am a housewife.

According to my husband I am a very good housewife, so at least there's that.

Let me be clear--there's nothing wrong with being a housewife.

Last summer I was even somewhat enamored by the idea.

So I am quite surprised that I am not ecstatic to find myself able to take up said role with little financial imposition (at least for the next three years) to my husband and myself. 

It's because the choice was not mine--I hadn't finished fulfilling my purpose as a teacher.

I had imagined having years longer to work with my kids.

And now I'm a housewife.

Just like that.

What's the point of this ramble of a post?

I'm in a period of adjustment.

Though almost two months have passed since I was declared disabled, I'm still adjusting to the loss of my job--specifically the purpose I found in my work.

That said, there are some things to which look forward.

I'm planning on engaging in some volunteer work at some point--though with my condition, I would only be able to do so for a few hours a week.

I'm trying to develop new hobbies--but there are only so many fake plants one house can take.

I'm starting to really enjoy certain aspects of being home--for example, not hurting all the time.

Having the time and the energy to truly take care of the house and my husband is another plus.

Having time to maintain and build friendships sure is nice.

Not being sick all the time (except now, when I have a cough) is also nice.

So, I'm adjusting fairly well.  I think I might even be on the upswing of the whole process.

Looking back over my life, I've always been able, ultimately, to adjust and be happy wherever life takes me and whatever it throws at me.

Another couple of months, and I'll be fully happy in my new role.

And truly, I do love all the day-to-day business of being a housewife--it's just a matter of getting myself to be ok with having such a tremendous life-changing decision taken out of my hands.

Anyway, that is my ramble on my current state of mind.

Now, I'm going to finish watching Lost In Austen and then vacuum the downstairs.

The bathrooms might also get cleaned today.  We'll see!

So, What Have You Been Up To This Month?

I wrote this post back in September.  I've delayed in posting it because, as I posted previously, I was waiting for word on my status.  Fortunately for my peace of mind, I heard from my disability insurance company and they've approved my claim.  I didn't really want to post anything about being declared disabled until I knew the whole story--as in, whether or not my claim would be approved or denied.  Now I know the whole story, so now I can begin the process of adjusting my mindset to accept this curve ball that life has thrown.  And start figuring out what the heck I'm going to do to keep myself from going nuts while following my medical restrictions and not having my job to go to.

So anyway, here's what happened back at the beginning of the school year:

I hope everyone has had a wonderful month!  I've missed posting on here, but now that my hubby is home from his business trip--and my laptop with him!--I won't have to miss it any longer!

My last substantive post was all the way back on August 21st.  So much has happened since then, I'm not quite sure where to start.  Well, as a wise man once said, the best place to start is at the beginning.

August 23rd was Freshman First Day at my high school.  The powers that be decided a few years back that it would be an easier transition for the poor little fishies if there were no upper classmen present their first day of high school.  This year they also relocated the majority of the freshmen classes into one wing of the high school.  First Day went really well--the kiddos were able to find all of their classes without the entire student body (3500 students) present.  I really enjoyed meeting my freshman homeroom, even though I was very saddened to learn I had lost my homeroom from the past two years for this, their senior year.  After the initial homeroom meeting, we went through an abbreviated version of a full day schedule.

My freshman were all very quiet that first day--they weren't sure what to make of the crazy lady at the front of the room, sitting on her desk and trying to get them to talk to her lol.  I was delighted to discover that I had several of my homeroom kiddos in my regular Spanish I classes as well!

August 24th was the real first day of school with all the kiddos present.  We spent THREE HOURS in homeroom at the start, for all the necessary paperwork, and then went through the schedule.  Unlike the previous day, thankfully, the freshmen kiddos were talkative and seemed excited to be there.  The upperclassmen were actually the quite ones.

August 24th was also the day that Bryan left for his field test business trip.  The trip was 24 days long, so just about a month.  It was a very long month.

The rest of the first week went well, as far as the kids were concerned.  All of my classes were engaged and quite a bit of fun to work with, except 7th period.  Don't get me wrong, they were great kiddos!  It was just hat by the end of the day, they had apparently used up any energy that they once had.  Lol in my three years of teaching, this was the first 7th period that had less than 30 kiddos and was NOT going to be super-high energy at the end of the day!

The first week we focused on get-to-know-us games and classroom rules and procedures.  Week 2 we started learning actual Spanish!  The kids, even the ones suddenly thrust into my classes because of schedule changes, were all well-behaved and engaged.  It was an extremely pleasant week!

That Tuesday was also the first officer's meeting for the Anime Club, which I had agreed to sponsor!  Wednesday was the first general meeting, which I was very sad to have to miss--I had to give a training on the nee ELPS handbook from the state at our department meeting.  

All in all, even with the stress inherent to teaching, I was getting very excited about the school year!  I had put my fears from the summer in the back of my mind.  The Anime Club was shaping up to be a ton of fun, especially because I had my own anime/manga phase back in college and could share their enthusiasm!  A lot of my kiddos from last year had come to see me, and I went to a home volleyball game to cheer my 5 JV girls on.  I was getting to know my regular class kiddos and my homeroom kiddos--which ones would shine, which ones I'd have to prod, which ones would take some careful watching--and was starting to build solid teacher/student relationships with quite a few of them.  I hadn't had ONE STUDENT mouth off to me in two weeks!  Things seemed to be off to a great start!

But there was a slight problem.  OK, it wasn't so slight.

The first Monday of the teacher work week (August 16-20), I was limping--my ankle had started to flare.  I spent the rest of that week trying to ride out one of the worst flares I'd had in quite a while.  I couldn't even sit for more than 45 minutes without starting to really hurt.  I made it through til that Friday, when I went to my rheumatologist.  He prescribed me some prednisone to try to get the flare under control and we arranged for my return in September.

I spent that weekend off of my feet, trying to relax.  Normally, that helps.  Of course, normally my flares don't last a week either.

Monday (Freshman First Day) I was still limping.  That plus Paddington's constant presence led to questions from my kiddos, which I, of course, answered, explaining my condition.  The week went on, and there was no improvement.  With the amount of pain and swelling, I did not get to start a school-year water aerobics schedule as I had planned. 

Again, I tried staying off my feet for the weekend.  At this point, I was starting to get worried.  I had never had a flare last this long.  When Monday came, I was still limping and hurting.  Tuesday saw more of the same.  Having to teach lessons, monitor student activity, answer questions--all the normal teacher stuff--was excruciating, even though my kiddos were wonderful.  They were even wonderful on the Friday before Labor Day for their substitute when I returned to my rheumatologist.

I was very nervous going in to that doctor appointment.  I knew I was already on three DMARDS, plus my NSAID and other pills, so adding more medicines wasn't an option.  I had no idea what our next step could possibly be.  Turns out I was right to be nervous.  My doctor's decision was:

Disability.

I know better than to argue with Dr. C, but I still tried to negotiate.  I asked about teaching until the semester, and was told no, that would only make things worse.  I asked about teaching the next week and was told, both by look and word, no, I needed to call for a sub and go in on Tuesday and talk with my principal. 

I was floored.

Dr. C's nurse filled out the paperwork while I took a minute to compose myself.  And by that I mean I cried like a baby for a minute or three.  Disability at 25?  And permanent disability at that?!?  I felt (and still feel) like a stranded fish.

Dr. C answered my questions as much as he could--I had to get the other answers from my principal, HR, and the disability insurance company.

That weekend was Victoria's bachelorette party.  I had to spend most of the weekend sitting down, even when we went out.  Vic had a great time, but I felt guilty that her Matron of Honor had to sit out quite a bit.  I also used those three days to try to mentally come to grips with my Dr.'s decision before my upcoming meeting with my principal.

On Tuesday, I went in and spoke with my principal, his secretary, and my department head.  They were all extraordinarily supportive and understanding, even though they hated to see me leave.  Fortunately for my peace of mind, a substitute that had filled in for me last year--whom I knew to be a good teacher and to know her stuff in regards to Spanish--was available to take my place.  I at least know I left my kiddos in good hands.

I tendered my resignation effective that day.  I have finished the paperwork process of applying for my disability insurance, and now I'm just waiting to hear about my approval status.

I miss my school, my classroom so much, and miss teaching my kiddos more than I could have imagined.  I miss being a part of my school family.  I feel unfocused, and more than a bit lost.  I know part of that is the shock--I never dreamed I would be declared disabled at 25.  And it happened so quickly, without any control over the decision on my part.

I'm still not doing that great RA-wise.  I can't sit for too long, can't stand for too long.  As far as walking goes, the limp is getting a bit better, but it's still markedly there--and if I'm on my feet to long, it's just as bad as it was.  Even driving for too long is difficult--part of the reason I flew to Ft. Worth this weekend for Victoria's last bridal shower.  I have to be very careful with my house work--observing my weight limitations (especially with the laundry), not vacuuming, timing tasks so that I am not up for too long, and can sit down as needed.  It makes for very slow progress when I'm trying to clean the house.

I hope that things will get better.  I'd like to be able to start water aerobics again, but I have to wait until Dr. C clears me.  I think my return to gardening will take an even longer wait.  For now, I'm trying to eat healthy meals so that the disease-forced inactivity and the stress don't cause my weight to balloon.  I have two bridesmaid's dresses to fit into in less than a month after all!

I'm reading a lot, watching TV and movies.  I've started to write again--brainstorming stories and coming up with beginnings and characters mostly.  I can't write for too long for the same reason I can't do anything else for extended periods of time.  I'm hoping to type up what I have, but I'm on the computer in short bursts only--too much time makes my wrist and elbow start aching fiercely.  This post has taken several bursts to write.

That said, this is my outlet and a very necessary one at that.

I know that there are positives to this decision--hopefully, being on disability will slow the disease progression and reduce stress-induced flares.  This is of critical necessity--in only four years, I've already lost one joint (my right elbow), my right wrist is collapsing, and my right ankle is bad.
Hopefully, with a slow down in progression, I'll hurt less.
Hopefully, I won't get sick as much this year, being away from the germs of the high school.  Hopefully, a slow down will also mean that I'll still be able to be a good mom when Bryan and I have a kiddo of our own.
Hopefully a slow down will mean that, sooner or later, we can HAVE a kiddo of our own.

There's a lot of hope there.  I'm trying to keep my mental focus on that, instead of the shock and fear that being on disability has brought.  And it's even starting to help!  Eventually, I'll wrap my mind around the whole idea of disability, adjust my outlook to a more positive one, and life will be wonderful yet again--after all, that's how I dealt with being diagnosed at 21, and with every other obstacle this disease has thrown at me.

And the best thing that happened this last month?  Bryan came home last Friday :-D.  He finds more positive aspects to me being home--the laundry done!  dinner cooked!  house cleaned!  Lol.  And me (eventually) not hurting or being sick.  He helps me to see the positive in this situation, and he's been so wonderfully supportive and encouraging about the whole situation, even while he was gone.  But having him here so I can actually hug him is the best. :-)

The Pause Button

The pause button is one of the most useful buttons on a remote.

It can suspend a movie's progress for you to go to the bathroom, or nowadays can stop live TV in its tracks.

Pause can halt a CD or an MP3, stopping lyrics and music mid-flow.

Pause freezes a video game so that you can get more chips or a soda.

It gives us a sense of control--we experience the entertainment that we want, when we want it.

It makes entertainment function on our terms.

It may sound funny, but I feel as though I now know how the TV, the DVD, the music, and the game all feel as they are frozen in the moment by a power outside of themselves.

Not so much that I'm frozen in place, but rather that my life has been paused in it's current pattern.

Right now, someone else has the power to decide how, precisely, the next several months are going to play out.

Until that person deigns to share that decision with me, I feel suspended within the flow of my life.

I'm still waiting on a particular phone call, which is overdue and which I'll talk about later, after it actually comes.

The pause button is not so empowering when you're the one being paused.

That phone call is the play button.

I'm more than ready for it to be pressed.

I know this post is nonspecific.  I promise I'll post an explanation and update once I'm off pause.

Just Something God Did

"It's just something God did."

I've come across this statement several times during my life.

 Generally, it's used as an explanation for something happening that seems unexplainable or unfair.  It could be used to explain a Bible story, or some sort of interpreted stricture from the scriptures.  Or it could be used to explain a current event, or an occurrence in an individual life.

There was a time when I could just shrug this statement off as someone trying to turn to their faith to explain what seems unexplainable.

I can no longer just shrug.

Using a personal example, I was told recently that my rheumatoid arthritis was "just something God did."

Blaming God for my RA seems unfair to God.

 Let me first say that I believe God gave mankind free will.  Otherwise why do we have the choice to believe in Him or not? 

(And yes, I believe we do have that CHOICE, not that we are predestined to choose one way or another.)

Back to rheumatoid arthritis. We don't yet know what causes RA, but the theory that best fist my situation is a genetic predisposition coupled with some type of physical stress.  So, let's dissect this.

Is it God's fault that my genetics are what they are?

(I ask that question realizing what a can of worms it could open; however, I'm going to stay focused on the implications it has for me, personally.)

If God is responsible for my genetics, then that means He controlled with whom my forebeares reproduced.  But God controlling my genetics implies that my fore-bearers had no say in whom they chose as a mate, and that conflicts with freewill.  

That doesn't work.  

Therefore, my genetics are a result of the choices my fore-bearers made, and aren't something God "just did".

So, if God's not responsible for my genetics, and I'm just lucky in that regard (*sarcasm*), did He cause the physical stress that triggered my RA onset?

Let's examine what I believe was that stress.  Due to some extreme upsets in my personal life, I loss 60 pounds in three months.  I'd call that a physical stress!  The RA onset was a bit offset from those three months, but I still believe that the aftereffects of losing that much weight in that short of a period were the trigger.

Did God make me not eat?  Absolutely not.  I couldn't eat because of my emotional upset, but God did not cause that either.  The emotional upset resulted from individual choices, both on my part and on the parts of others.  I could have eaten if I wanted to, but I didn't want to. 

So the physical stress was a result of individual choices and was not something that God "just did".

I definitely do not rejoice in having rheumatoid arthritis, and I'll admit that, on occasion, I give in to the "why me's?". However, that question is counterproductive to getting on with my life, and I don't see the point of asking it often.  I realized when I was diagnosed that I could either let this disease beat who I am, or not. 

I choose not.  

I also hope that my having RA means that the genetic marker will skip my kid(s), and hopefully will have skipped all my younger cousins as well.  I know there's no guarantee of that, but I sure do hope.

However, even while dealing with the sadness and worry that sometimes comes during my journey with this disease, I realize that my rheumatoid arthritis is a result of personal choices--both mine and those of others--that, unfortunately, culminated in my genetic predisposition being triggered.  I don't blame anyone--there are too many contributing factors for my RA to be any one person's fault.  And as with the "why me's?" blame would be counterproductive to me living my wonderful life.

And if I don't blame those who made the choices leading to my rheumatoid arthritis, never could I blame God.  

My RA is not His fault, and definitely not something He "just did".

School Has Started!

I am so glad it is Saturday!  

Last week, we teachers returned to the orange halls of our high school to prepare for the new year.  Some of this preparation--specifically the staff development meetings-- felt like a waste of time, as it always does.  The rest--preparing the room, working with the other teachers--that part was fun.  As I always do, I find that I have missed interacting with people on a regular basis over the summer.  I'm really proud of the way my room looks too!

I will still miss the summer, especially the part about only having two flares.  My ankle has been flared, meaning I've been limping all over the place, since Monday, and the kids haven't even come back yet!  Oh well.  Though, as I mentioned in my last Not Me! Monday post, it is hard leaving the summer's flare and sickness-free existence and returning to a place where I am guaranteed to experience both.  I am still struggling with the fears I mentioned in that post too.

That said, there are things I am looking forward to this year--sponsoring the anime club, meeting my new kiddos, and working with the Spanish I planning team (our new teachers are awesome!  And one is an AGGIE!!! WHOOP!), to name a few.  Seeing my old students is high on the list too--three of my volleyball girls came to see me yesterday and it made my week!  So all in all, I am starting to feel the slow increase of excitement that comes at the beginning of every school year.

It's funny, the longer I'm in education, the more I disagree with the current trends, or at least the mentality driving the current trends.  Primarily, the insistence on entertaining the students.

Of course, "entertaining" is not the term used--the term is now "engage".  I am all for student engagement, but I draw the line at regular arts and crafts projects at the high school level, to the exclusion of lecture.  I also do not agree that teachers need to constantly use technology in their classrooms to "engage" their students.  Students have to be held accountable for engaging themselves in their education as well.  They need to learn how to apply themselves to the task at hand, even if that task is without technological and visual bells and whistles.  After all, both in college and on the job, nobody will be as desperately concerned with keeping them entertained as K-12 teachers are expected to be today.

I also get tired of hearing the "new" proposals to "fix" or "remake" the current educational system.  With few exceptions, these ideas are NOT new--and those few are not truly feasible at the national level.  If I learned anything while pursuing my Masters of Education in Curriculum and Instruction, I learned that education is cyclical--the conceptual core of "new" ideas have fueled such "innovations" before, and yet we keep coming back around to the traditional model.

And I really wish folks would stop using the comparative argument for reform--that is that the American education system is horrible in comparison to other nations.  I would like to point out that we are the only nation that INSISTS on educating ALL of its children at the same level.  In Europe, there is a tracking test that is taken around 12--if you pass, you are on the college track, if not you go on the trade school track.  Other nations only educate the children of families who can pay for it, and even if they do offer education to their entire populace, they sure as heck aren't tracking drop-outs and punishing the schools they've left, nor are they tracking down truants and dragging them back to school.

In other words, are students are compared with the cream of the crop of other nations--so OF COURSE we come off looking bad. 

Anyway, enough of that.

On the RA front, we're continuing to try to put off surgery with cortisone shots--which are working, kind of.  I also have to continue wearing my brace on my right wrist, and continue with my 5lb weight limit on my right arm.  At my one month follow-up with Dr. G, he also did a physical examination of my left wrist and pronounced it "not a normal wrist".  Imagine my joy.  So, I am now subject to a 10lb weight limit on my left arm, and can no longer vacuum--at least not until we get a MUCH lighter weight one.  Dr. G gave us several brands to check out.

Because my ankle is already flaring, Dr. C put me on prednisone (5 mg/day as needed) and I'm going back to see him in September.

Other than all that, life is really going wonderfully.  I was able to get one room redecorated and Victoria's shower came together splendidly.  

Bryan leaves for his field test this coming Tuesday--I'm going to miss him a ton for the three weeks and three days he'll be gone BUT I will also have plenty to keep my busy!  School and water aerobics will keep my weeks hopping, and as for the weekends, well--next weekend I pick up one of my bridesmaid dresses and go get it fitted and go to Bryanne-Michelle's shower.  The weekend after that is Victoria's bachelorette party, and the weekend after THAT I am going to an Astros game with my mom and day for Hero's Night.  And the next weekend, Bryan will be home!  

Lol, but even THAT weekend I'm busy--I'm flying up to Ft. Worth for Victoria's shower up there.  And then both weddings are right around the corner, as are Thanksgiving and Christmas!  This fall is going to fly by! 

Now, to go back to enjoying the first Saturday of my school year!

Single Child Stigma

On Facebook the other day, one of my friends posed the question: "Is there a right answer to the question: 'Why do you want to have more kids?'"

Most people issued a statement along the lines of: 
"Of course you need to have at least one more child!  Your first child needs someone to learn from/help care for you in your old age/have company if something happens to you/etc." 

And of course, the only-child stereotypes were brought up--if you have only one, they will be socially inept, they will be spoiled, they will lack basic human interaction skills, and so forth.

These lines of logic really struck a nerve with me.  To address the stereotypes first, parents have a GREAT deal of control over how their child develops.  If they only have one child, they need to take steps to socialize that child and teach them how to interact with others.  And spoiled children are a direct result of permissive parents, not a result of being only children.

In my experience, the only children I know are wonderfully adjusted people with healthy and strong interpersonal relationships, jobs and productive lives.

In regards to the other arguments for having more than one child, the one that bothers me the least is the child needing someone to learn from.  I assume that, by this, the person meant social skills and interaction--which again, if the parents are doing their jobs, can be done through other socialization methods than sibling interaction.

As far as having another kid to share the burden of caring for aging parents, I have to admit that there is a certain anthropological logic to it.  However, you're assuming that both (or all) children will be ABLE and WILLING to care for aging parents.  That's not always the case.  Financial issues could be there, or health issues on the part of the kids, or, heaven forbid, a falling out in the family.  Or everyone might live in different states!  So, having another child just so that your first born doesn't have to care for you all by him or herself seems to be based on some pretty big assumptions.

Now comes the one that bothers me the most:  you need to have at least two children so that, when mom and dad are gone, they have someone.  Basically, as with the above reason, according to this logic you are bringing a second child into the world to fulfill the perceived emotional needs of the first.  That is one of the worst reasons to have another child!

Don't get me wrong--I have a little brother, and I would not trade Austin for the world.  We are best friends and I don't even want to imagine what my life would be like if he were not here.  BUT I also know many siblings who barely talk to one another, who cannot get along for more than a few hours in the same room, and who relate to each other only through the obligation of blood.  So assuming that having at least two children means that they are going to have some sort of emotional need met solely based on being siblings is, in my opinion, false logic.

Also, I have found that, in the absence of blood-siblings, life, fate or God (take your pick) often PROVIDES us with brothers and sisters.  Take Victoria and Bryanne-Michelle, my best friends.  We might not be related by blood, but they are my sisters.  My little brother's best friend Mike is his brother (and my little brother #2).  So even with Austin and I--who are siblings--we have others who fall into those roles.  So worrying that an only child will never know the sibling bond is not necessary--while not identical, they will form bonds that are similar in strength and composition.

So now that I've torn through the expressed reasons for having more than one child, let me clarify something:  I think having more than one child is wonderful, if it is right for your family.  Make sure that your family is emotionally and financially ABLE to add another child--working in a low-income public school district, I see the consequences of so-called parents who never took that into consideration, and let me tell you, they aren't pretty.  Also, I think that, if you choose to have more than one child, you need to examine your reasons--make sure you are bringing that next child into the world for the joy of who they will be, in and of themselves, as well as for the joy of adding to your family.

How does all this affect me personally, other than inspiring me to write a response?

Bryan and I will only have one pregnancy, so barring some twin craziness or somesuch, we will probably only have one kiddo.   Reading the aforementioned discussion reminded me of how much of a stigma there seems to be associated with that decision.  However, we have discussed this from every angle, and it is the decision that works the best for our family.

Part of the reason is that children are EXPENSIVE.  We would rather be able to provide our kiddo with many opportunities in life without putting our family through financial hardship.

A bigger part of the reason is my health.  Rheumatoid Arthritis is a progressive disease, which means there very likely will be a point when I cannot work.  Keeping that in mind, Bryan and I have decided to only have one kid so that we can afford for me to stay home, or work part-time.  Also, RA can come back much worse after pregnancy, and if I'm lucky enough to come out of one with the same health state as I went in, I won't be gambling a second time.  Why risk being able to be less of a mother to two than I could be to one?  That wouldn't be fair to the kiddos, my husband, or myself.

And honestly?  With all my health issues, I see having one healthy, happy baby as being enough of a blessing. :-)

So, when the time comes after our little one is here, and someone asks, "When are you having your next?" I will smile, say, "We're not.  Our family is complete as is" and shrug off the stigma.

The Good, The Bleh, and the Waiting Game

Last Friday, I posted about my trip to an orthopedic specialist who decided that I need elbow surgery.  Since he did not feel qualified to work on my elbow, he referred me to a Dr. G, who I went to see yesterday. 

Here's the GOOD that came out of that appointment:
 Dr. G is a wonderful doctor.  He's very intelligent, patient, and took the time to talk with me and explain things thoroughly.  He also took his own X-rays (something that every good orthopedic specialist will do), and even X-rayed my right wrist when I mentioned that it was painful.  Now, I knew that wrist was in bad shape--after all, it looked like Swiss cheese at my last MRI.  But even Dr. G was surprised with the amount of damage.  He asked if it was just left over from my RA-onset four years ago.  I explained that no, it wasn't this bad to begin with, nor was my elbow, but that my disease is still progressing.  Always a fun thing to admit when my main coping mechanism is to treat it as an inconvenience and pretend that the pain DOES NOT mean physical joint degeneration.  Oh well.  After that conversation, Dr. G explained that my wrist joint has actually shifted right 3 millimeters and that the bottom joint on my right index finger is acutally thinner than the others.  The good news is that, even though my wrist is collapsing, it's collapsing more-or-less straight down.  THAT means that, hopefully, my wrist won't deform.  Which would be nice lol.

The other good news is that Dr. G has decided to try cortisone injections before jumping straight into surgery.  Bryan was impressed with that because, in his experience, "cutters normally like to cut."  Dr. G is hoping these injections will work for 6 months.  That would be very nice, but I will be incredibly impressed if they work for 1--that would be longer than any cortisone injection has lasted in this wrist and elbow for the past four years.

Now, on to the BLEH:
Yes, I need surgery.  As Dr. G put it, even if God came down tomorrow and took all the RA away (which isn't going to happen), the mechanical damage would still be there and need to be addressed.  If I were 50-55, he wouldn't even hesitate on scheduling the surgery.  However, I am 25.  The wrist fusion wouldn't be all that big a deal, even at my age, but the elbow replacement would be a huge deal--it would be 2-3 months before I could move my arm again, the weight restriction on the prosthesis is no more than 5 pounds, AND the prosthesis, at best, is only made to last 10 years.  And a secondary elbow replacement never goes as well as the first one.  And I WILL need these surgeries, but there is a bit of good news.

Dr. G said I could put them off as long as I could stand to!  Those of you who know me know that he probably should NOT have told me THAT--procrastination is my specialty!  Of course, with the bone-on-bone situation in my elbow, eventually I'll probably start getting bone spurs, and at that point surgery won't be an option, it will be a necessity.  BUT I can sure try to put it off until that point!  My personal ideal would be to wait until after we've had a kid and that kiddo has grown up enough to not need to be picked up.  Of course, at that point, we're talking quite a few years, but again, I am STUBBORN and a professional procrastinator!

More BLEH:
Dr. G decided that I need to wear a wrist brace ALL THE TIME except when watching TV and taking a shower.  He's hoping that the brace will reduce the mechanical stress on my right wrist.  Last night I wore it to sleep like a good little patient and winded up clocking myself in the face with it lol.  Another plus is that, once I get used to it, I will have a pretty good idea of what not bending my wrist will be like after it gets fused, whenever that might be.  I need to think up a name for my brace, since hopefully we'll be together for awhile!

Also, Dr. G has put me on restriction, just as if I had already had the surgery.  Except he's being stricter.  His hope is that by restricting mechanical stress on my right elbow, we can put off the surgery even longer.  So, my restriction is that I can not lift any more than 2 to 3 pounds with my right arm.

I am trying to, as my loving husband says, "swallow my pride" and submit to the wrist brace and weight restrictions and be a good little patient.

Which brings us to THE WAITING GAME:
I'll go back to see Dr. G in a month.  At that point, if the cortisone is still working (cross fingers!) and the restrictions have helped, I probably won't go back until time for my next injection.  If the cortisone works like it normally does, hopefully the restrictions will help.  Still, at that point, we'll have to talk about our next options.  Luckily, I will see Dr. C before then for my August infusion, and we'll be able to discuss Dr. G's findings and I'll get his take in regards to the RA.

So, that brings us up to speed on the whole RA thing!  It's only been four years (well, four in August) since I was diagnosed, and I sure didn't expect it to get this bad this quickly.  I thought that I wouldn't be on an IV treatment (Remicade) until I was in my 30s, and that joint replacement wouldn't even enter the conversation until a good while after that.  But as my wonderful and infinitely supportive husband has said, I have to play the hand I was dealt, adjust accordingly, and, as I always have, NOT let this thing control me or my life.  Still, think good thoughts for me folks, I could sure use them!  Thanks in advance!

Well, That Sucks

I went to my very first orthopedic appointment today.  It only took me a year to actually schedule.  That's right, Dr. C told me to go see an orthopedic specialist about my elbow A WHOLE YEAR AGO and I just now went.  I'm nothing if not a procrastinator.

So, yesterday I called and scheduled an appointment with Dr. K.  I first saw the intern Dr. S, who examined the range of motion with my right elbow.  Or more accurately, he measured the lack thereof.  Next I got bustled over to the in-office X-Ray room and had a few elbow pictures taken of the internal variety.  Then it was back into the office to wait.

Once Dr. K and Dr. S had discussed me and looked over everything, they both came in.  Dr. K examined my elbow again, and told me his professional opinion:

I needed to go see someone else.

Why?  Well, while Dr. K is fully qualified and accustomed to evaluating elbow-related problems, he is not a specialist in the actual surgical approach to the elbow.

Yep, it's official.  Dr. C was right last year.  I need surgery.  Apparently, where normal people have, you know, an elbow joint, I do not.  In the X-Ray there is no space.  I have a place where my paired radius and ulna are in direct contact with the humerus.  Ironically, I find nothing funny about it.  

So, next week I will go see a Dr. G who specializes in surgery of the elbow.  According to Dr. K and Dr. S, I will probably need some sort of elbow replacement surgery, since, seeing as I have neither cartilage or tissue between the bones, I am now beyond the half-step of removing said parts to try to repair the joint.  Dr. S gave me an injection to help with the pain, but I'm doubtful its effects will last long.  My right (non)elbow has never responded to such measures.

When I go in to see Dr. G, I will have all sorts of questions I need to have answered.  Due to financial considerations, I'm hoping to wait to go under the knife until the beginning of December--that way, even though it's during the school year, I can use Christmas Break as part of my recovery time.

How long will it take to recover?  I have no idea.  That's Question #1 on my list.  Anyway, I'll make sure to share how the appointment goes after it's gone!