November appointments

Well, I'm not really sure where to start tonight.

We had already pretty much decided that Orencia wasn't really working for Emily, however I wasn't expecting our doctor to suggest just dropping it and hoping for the best.  Granted, we would be keeping the Rituxan, which she feels is actually helping a lot, but still...  I mulled that over for a little while, and decided that with her recent daily thumb and toe pain, that is probably not a good idea. She has told me that they sometimes hurt so badly that she wants to rip them off.  I totally love our rheumy's- ALL of them- and I think this was the first time the question seemed completely not aggressive.

The night went by uneventfully, with no visit from the doctors until just as I was about to go down the hall to take Zach to his appointment.  Just as we were starting off, one of the other rheumies came over to see us.  She asked me how I felt about dropping the Orencia, and I told her my fears about the thumbs and toes.  She told me that she was not fond of the idea, enough to have mentioned it to the head of the department.  This is part of the reason that I love our team- they actually communicate.  I like our other option much better- instead of dropping Orencia, we will spread it out to every six weeks.  She also asked when our last Prednisone decrease was.  Ummm... long enough ago that I can't remember when.  Well, permission to drop 1/2 of a milligram... granted!  :)  That had me over the moon!  I was so excited!  No, it isn't a huge drop, but it is huge to us!

So, I left our room extremely happy, expecting an easy appointment for Zach and then on to home.  Not so much.  While he looks great, our doc noticed that his toes were swollen.  And they hurt.  And his back has an arthritis spot.  Which usually means Spondylitis in a person with Psoriatic Arthritis.  So, yeah.  Not thrilled.  I was very glad that his appointment was today and not yesterday.  I like thinking our appointments over on the way home.  It's harder to think straight when they keep talking and giggling.  It just hurts your heart to hear these things.  This is not what you want for your kids.  I had really hoped that Zach's would be easier to deal with because we caught it early.  He responded so well to Enbrel at first.  I really thought that this would easy.  He's HLA-B17 positive- that is a psoriasis marker, and it often means a more mild form of arthritis, if I remember right.  I thought we were clear.  So far, it doesn't bother him too much, so it obviously isn't really bad right now.  He has complained of his back once or twice.  He complains of the feet often, and on Halloween it was the ankles.  No changes in meds yet- we are to just keep an eye out and see what happens.  We will go back in 3 months, but call if anything changes.  

On a sweeter note, we were asked by one of the rheumies if we were going to be at the Jingle Bell Walk.  :)  We don't go to that event, only because it is so cold, but I thought it was cute that they were thinking about it, especially since our walk is so far away from the hospital.  I really do love our doctors.  But I would like to put them all out of business by finding a cure, please.  Then we could all just hang out and talk medicine without actually having any medical crises ourselves.  On the bright side, we don't have to go back for six weeks.  Woot to that!    

Oh, and we got a dog!  We swore that we were NOT getting a puppy, and we were NOT getting a big dog.  You know what they say about the best laid plans, right?  We have a shepherd/ husky/ lab mix.  He is three months old.  We were both thinking that he was six months old, but no, he's three months.  His name is Brody, but I swear I may change it to Bitey.  He is definitely like a baby, and so cute!  Assuming I can get his immunizations tomorrow, we should be good to start him in training classes tomorrow!  I am so hoping.  We need to get him to stop biting, and so far the tips that we have found on YouTube are not working.  He is good with the younger kids; it's just me, Kevin and poor Ash.  He especially loves to bite Ash!  She'll be just sitting on the couch texting, and he comes up and starts biting her.  Poor kid!  PetSmart said that they can get him close to therapy dog in training.  I can't wait to start!  I'll keep ya'll posted!

Thankful

Back in 2007 before my children were diagnosed, I was a wreck.  I was extremely depressed.  Nothing in the world could make me happy.  I was crying on my way to work every day.  Yeah- every day.  Aside from trying to raise my family, I had no idea of what else to do with my life- no clear direction.  I was a mess.

After Emily was unofficially diagnosed with Juvenile Arthritis, I was lost... for a while.  I felt hopeless.  Until I stopped feeling sorry for myself and started thinking of how Emily must feel.  After all, she was the one hurting... not me!  I started researching, trying to understand this madness.  At that time, she could barely walk.  Almost every joint was affected.  Her anxieties were extremely high.  She didn't want anyone to touch her.  She couldn't sit on the floor because she couldn't get up. Her kindergarten teacher carried her around school.  Getting out of bed was a huge challenge.  She spent more time in the bath than anywhere else.  And she didn't know what it was like to spend a day out of pain.

Starting Naproxen gave her the first taste of normalacy.  Not that it was enough, mind you.  It took another 8 months to really feel what it was like to be free.  It took 7 months of Methotrexate and then starting Enbrel to help her.  Around that time, the Raynaud's started.  This and some skin tightening made her rheumy feel that perhaps she had Scleroderma.   Oddly enough, this was her good time.  This was the closest she has ever come to remission.  It lasted about a year.

This was also around the time that I realized that she really isn't mine; she was given to me, entrusted to us as parents.  We all belong to God, like it or not.  This is when I learned how to let go, and to trust.  It was pretty tough.  We faced her mortality in a way that no parent should have to.  It was also around this time that suddenly, all around me, I was finding blogs of parents whose children had brain tumors.  I didn't go out of my way looking for them;  they found me.   This helped me to see how blessed we were.  This was also around the time that the little peeps and I went back to church, the only place I can go to cry.  I felt that this was all a way of leading me back home to Him, and bringing the little ones to Him, too.  He was showing me how He was taking care of us.

Emily's diseases have helped our family in so many ways.  We went from being lost and out of touch with each other to being closer than almost any other families that we know.  No, it didn't happen overnight.  It took a lot of work and a lot of pain.  We count our blessings.  We look for the good in everything, because we know that time isn't guaranteed.  The longer she is sick, the more medicines get added to her already long list.  The longer she is sick, the more systemic effects pop up.  The throat issue really scares me.  I have heard of people that require surgery to reopen their throats.  I hope to God that it doesn't come to that.  I refuse to worry about things now until I know for sure that it needs to happen.  We go day-by-day, and we have for so long that it is just habit now.

We expect the possibility that one of the kids will be sick daily, or too tired or sore to go out.  It isn't because they don't want to go places, because they are usually disappointed when they have to miss out, or we rely on her wheelchair.  They have learned to deal with it, and enjoy the good days.  We embrace the good days, and just get through the lousy ones. I truly never know how any day will be.  She is so complex.  He isn't so much, but we need to be careful not to downplay his problems because hers are so much more severe.  I try hard not to trample on his feelings.  My sweet little man.  <3 p="p">
In the midst of this, we have met some of the most amazing families!  This has led me to having some of the coolest friends that I could ever imagine.  Some I have never actually met in person!  My Facebook friends that also have kids with similar problems have become like family.  It is so wonderful to have these people in my life... even if I rarely get the chance to chat with anyone right now!  (This, too, shall pass.)

I never thought that I would ever go to college, or even know what I wanted to do with my life.  Now I have clear direction, and I am empowered by how much I have learned through my research.   I would never have researched if first Emily, then Zachary, didn't get sick.  I have learned all about Dermatomyositis, which took me months to pronounce, as well as Lupus, Scleroderma, Raynaud's, Psoriasis, Psoriatic Arthritis, Spondylitis, and other little things.  I learned what patulous meant,  (spreading widely from a center patulous 
branches, according to Merriam Webster),  and I've learned about esophageal dysmotility and lung changes that warn of pulminary fibrosis.  As crappy as this might be, it has given me a confidence that I never before had, as well as a drive and motivation that I did not have before.  I made a vow to myself to be able to speak with the doctors on their level.  I am 95% there. I am so much stronger than I ever thought that I could be.  Ever.  And the kids?  They are way stronger than I am.
I never, EVER thought that I would be the type to homeschool my children, and yet here I am.  Granted, it is out of necessity, but still... There is no way that she could continue on in public school.  Just simply no way.  She had such a difficult time last year, but that has led to such a great adventure!  Now we have our butterfly garden, crabs and fish.  We have science everywhere!  Everything leads to learning.  I love it!!!  And we are in this together since I am also in school.  We appreciate each other and love each other like we may not have long, because you just never know.  I could get hit by a bus tomorrow.  What regrets would I have?  None.  Could you say the same thing?  Do you have your priorities straight?  Life is too short to worry about competitions and material things when it comes to family.  Drama is way over-rated.  Who needs it?  I don't have time for drama.  We are ecstatic that October wasn't spent with a long stay in the hospital for a third year in a row.  That rocks!!!  Yeah!  We are happy just to be here, just to be together.  That is what matters, and I am thankful and blessed.  Every. Single. Day.