All is Well!

Oh, for once I can say that it's wonderful to not be writing much!  I write much more when things are going wrong.  Lately, everyone is doing pretty well!

I truly feel that all of the work that we put into getting Emily on growth hormones has helped tremendously.  She has been so much better.  In fact, we are supposed to try stretching her Remicade and IViG infusions out from every four weeks to every five weeks!  I am so excited about that!!!  We have waited a couple of months to make sure she was doing as well as I thought she was, and I feel pretty confident now.  I got her a gym membership.  Now all I have to do is drag her there with me.  LOL!

Zach is doing well.  His asthma started flaring, but at least we have everything we need for that.  He had one month where his joints were red and swollen, but they have evened back out.  His rheumy (who is leaving us!) mentioned that we would likely be asked by the other members of the group to decrease his meds when the warmer weather comes.  In sunny Florida, we also have very high humidity levels.  They can be overwhelming for some things, but it's good for psoriasis, asthma, and Sjogren's!  Hopefully around March we will drop his Methotrexate injections, and then consider dropping his Enbrel to once a week instead of twice a week.

My oldest and my hubby are doing well.  :)  I've been plodding along.  I had quite a flare for about 2 months, but I think I am past it now.  I've been hanging at the gym because it makes me feel better.  I just finished one of my easier semesters at school, but next semester is going to be hell.  I will likely not write at all through the next semester.  Things are good, though.  Eyes are good, lungs are good (except for the asthma), and the kids are happy.  We just finished our homeschool year, so the kids are on a short break until the new year.  Life is good!

Lastly, Emily turned 13!!!  She had a nice birthday.  We celebrated over 2 days; one day was quietly spent at home, and another day we went to an amusement park for the day.  We all had a great time!  So, now to change the blog name.  Shall I change it to "My 13 Year Old is an Old Lady Who Turns Purple" or "My Teen is an Old Lady..."?  Decisions, decisions.  It may be hard in a google search if I change it to teen, but then I won't have to change it again for another seven years.  Thoughts?  Let me know!  :)  I hope y'all are doing well!

And then there were three

A few years ago I started to notice some things about myself.  I was turning pretty white when it got cold, I would get random pains bad enough that I almost drove us off the road a few times, and chronic fatigue.  The fatigue was bad, really bad.  I didn't have time to deal with it, so I pretty much just ignored it for a while.  Until my shoulder decided to rebel.  And then my knee stopped working for a few days.  Then my hips started popping every day, and aching often.  And my ankles started to feel like glass shattering when I would stand up.  Eventually I brought it up to my doctor.  He quickly dismissed me.  He did a fast strength test on my hands and decided I was fine.  After all, I was too young for Rheumatoid Arthritis, despite having two children with Juvenile Arthritis.  Since it really took a lot for me to say anything at all, and my symptoms weren't bad, I didn't really argue.  I told him that I was pretty used to being invincible but something was starting to happen to me.  I told him I felt like we had to catch it before it got bad because I don't have time to be sick.  He nodded politely and sent me on my way. 

Eventually I gave up.  He wasn't listening.  By this time I had new stuff- my right hand was going numb every single morning, and my right foot would go numb when I was about due for my vitamin B shot.  Eventually I noticed it would still go numb after my shot.  Then my hands started "cramping".  That started to affect my work and my schooling.  I knew it was time to move.  I finally got myself a new primary care doctor, with a little urging from several JA friends.  I guess at this point you could say that I wanted to be tested but I didn't really believe I had anything serious going on.  I mentioned my kids' illnesses to the new doctor, but I didn't tell her I suspected RA for me.  When I started telling her about my hands she immediately asked if I had been tested for it.  I explained that our old doctor didn't feel it was possible.  She actually listened.  I felt totally comfortable with her.  It was nice!

Even though she felt that I probably had the start of it, I still dragged my feet on seeing a rheumatologist.  My labs weren't pointing clearly to anything in any direction, and I still didn't feel like I was bad.  I finally made myself go two weeks ago.  My rheumatologist was hoping that steroids would do the trick and it would disappear.  He said that he sees about one person a week that has such a mild case that steroids alone kick it out and they never come back.  I hoped I would be that case!  Nope.  My shoulder is about 50% improved, but my wrists tonight are aching enough to keep me up.  My knee is still not happy.  So, they also ran additional labs.  They ran a few that I hadn't seen before.  I didn't really have time to look at the prescription, but we talked about it Monday.  I tested positive for both Sjogren's tests.  And suddenly it all makes sense.  The neuropathy, the lighting bolts I sometimes feel shooting down my arm, my anemia, and even my thyroid are likely all related to it.  And then there is the leaky eye that I thought was a blocked tear duct.  That is most annoying.  I have made my peace with it over the past 24 hours.  At least I have some answers.  We are going to try Plaquenil to see if it helps.  It may take 4-6 months to kick in, but if it helps to keep me from getting really sick it is worth a shot.  The PA said that because I don't have high inflammation counts I will not likely see deformities or even a lot of degeneration of the joints.  I guess if I have to have RA, this would be the way to go.  I'm a little sad, but I am determined to stay on top of it and beat it.  My kids have been such examples for me.  I have to be strong for them.  

I still have like the best family ever.  That really helps to keep me sane.  My kiddo's are all amazing in their own way, and I cannot even believe how much I love and like my husband.  I still consider myself blessed.  Just burdened.  :p  

I am spending the next two days cooking!  I hope that everyone has a wonderful Thanksgiving!  Take care & God bless!