tonsil day

Caroline is having her tonsils out today. I am waiting right now to hear that she is finished. she fought the anesthesia hard and that was tough to see. here is a fun video we made last night of her telling me about today. Let's hope she is this excited when we get home!

What kind of drugs to you take?

You might have noticed that I like to use this blog as a way of showing pictures of the kids, but I've also been using it as a way of letting people know more about RA.  So here we go again.  Several people have asked me lately how the RA treatment has been going and what kind of medicine I have to take.  Lots of things have changed and my medicine routine is definitely detailed!  I think back to this time last year and the only thing I took was a daily vitamin.  Now, I have one of those old people pill holders made by the arthritis foundation.  Tommy was sweet to pick that one up for me as it is easy to open!  It is also larger, which is helpful for the large pills I take!  So, on a daily basis I take:

 

Arava (aka: leflunomide) This is the newest drug to my RA regimen.  This is a DMARD (disease modifying drug) that we have added until we can start the biologic medicine here soon.  More on that in a minute. So far no major side effects.  I noticed a bit of nausea at first, but has seemed to fade.  I am on a lower dose of it, so let's hope nothing else.  I have to watch liver function with this med.  Hopefully we will be able to tell soon if it is helping!

Calcium and Vitamin D: I take this one regularly as I am on and off prednisone to help with inflammation.  Prednisone can suck the calcium from your bones.  Plus, just a good idea to take some extra calcium!

Flaxseed oil: I take one of these a day.  This is good for Omega 3's and has also helped wonders with my Sjogren's syndrome.  I have been able to stop taking my Restasis drops for my eyes.  This helps with natural lubrication for the dryness of my eyes.  Let's hope it continues to help in the fall and winter when they were so bad before!  Anything to help me take less major medicine!

Isoniazid (INH): This one is really fun.  This is to treat the TB...yes tuberculosis.  Somewhere along the way, I have been exposed to TB.  Now, let's get this straight...I am NOT contagious.  It is a latent form (meaning non-active).  People can carry the latent form and not be treated.  But let's remember, I am on immunosuppressant medicine and have been for almost a year.  I could have come in contact with someone then or maybe even during some of my travels.  How often do you really have a TB skin test done?  I had not had one for 7 years, but they make you take one as a precaution to starting a biologic medicine to help with the RA.  Thank goodness they do!  The biologic could have activated the TB had I started it.  So now, I am on a 9 month regimen of INH to get rid of the TB.  I should be able to start the biologic in a couple months...hopefully!  No side effects with this one, but do have to watch liver function with this one as well.  I do lots of blood work!

Folic acid: I take 4 of these pills a day.  I take this to off-set some of the side effects of the methotrexate I am going to mention in a minute.  Methotrexate works on the folic acid in your body.  So by adding it back in, it is supposed to suppress some side effects.  I get REALLY bad mouth sores, usually 4-5 at a time, and usually twice a month for a week at a time.  I don't know if this really works, but it can't hurt to try.  My new rheumatologist has some suggestions as to how we can change some things up next month to try and reduce the side effects even more.  Can't wait to hear that!

And now the fun one: methotrexate.  I have mentioned this one in a previous post.  This is a chemo drug that is also given to RA patients to suppress the immune system.  I used to be on an oral form of it at a dose of 20 mg/week.  You can only take this once a week or it can cause liver toxicity.  As you have noticed, I have to be careful with liver toxicity.  I have now switched to the injectable version of this medicine as it is supposed to be more effective in the injectable version at the same dose as the oral. So hopefully getting more bang for your buck.  Since they can't up my dose due to so much liver strain, we figured this was worth a try.  The try part means I have to give myself a shot.  Not just any shot, a shot into the muscle.  Tommy gave me my first one, and honestly, I have found it easier to give to myself.  I know when it is coming!  I think it is crazy how neon yellow this medicine is.

Here is a nice image describing the different types of shots.  For example, Tommy is a diabetic and he does the subcutaneous shots.  We had to learn how to do the IM shots at the doctor.  There is some risk of blood clots if you hit the blood vessel, so you have to be careful!  The needle is long!  It is probably a good inch to inch and a half long.  So far, it hasn't hurt too bad.  Fortunately the medicine doesn't burn going in!

So that is a rundown of my daily and weekly regimen.  The pain is still pretty consistent, so we are hoping that the biologic will help tremendously when we can start that.  The kids are a blessing to help take my mind off of things.  My sweet husband is wonderful to help however he can.  I just try to keep it all in perspective and focus on the wonderful things in our life!

A New Friend

Right above the kitchen sink is a window.  This is one of my favorite windows in our house.  I guess that is a good thing as it seems I find myself at this window a lot these days...a lot.  Now that it is summer, I feel like we are snacking or eating a meal all day long!  There are always dishes to do.  From this window I can see a great view of the farm behind us.  Spring is my favorite for watching all the baby calves emerge and explore the farm.  Then there are days that they chase after each other and play like I have never seen cows play before.

Here lately though, I've had something else to look at from my window. This spider has made the area between the screen and the window her home.  She keeps spinning her web and catching all kinds of bugs.  She hides out during the day and is very active in the morning and the evening.  I pointed her out to Jack a couple of months ago.  For some reason, I have not ever cleaned out the web and run her off.  I never thought I would say this, but it has been neat.  She has gotten so big!  She spins, and spins, and spins her web.  It is getting thick!  We call her Charlotte and keep waiting for a message in her web.  Those would make for some great pictures!

Butterfly Show

**Please note-Caroline is wearing the same outfit in the last several posts.  Yes, she does have other clothes, but this is her outfit of choice these days.  If it is clean and she finds it, then she is wearing it!  She thinks it looks like a bathing suit.  I need to go back to JCPenneys and buy a couple more!**

We made it to the butterfly show.  It has quite a story to go with it, but let's just say, we finally made it.  The kids love going to this each year.  The only downside this year is that it was like 90 something degrees outside.  Inside the show, it is so hot and humid as well!  We weren't able to just sit and enjoy as we were dripping with sweat and all sticky.  Poor Caroline kept looking for an exit to sneak out into the cooler air!

Such forced smiles.  This is up at pretty Eden Park overlooking Cincinnati.

I don't really see a resemblance in these two, but this picture is a different story!

Jack was so excited this butterfly landed on his paper.

Caroline trying so hard, probably too hard, to get one!

Having fun though

Here comes the sweaty hair and red face

Little butterfly on his fingers

And one like we always get!  Let's see how it compares to a couple of years ago.

June 2010

Knoxville Fun

We spent this past week in Knoxville visiting with my parents and brother.  It was also neat because Jack got to attend VBS at my parents' church.  It is a huge production there.  Jack was really enjoying it and taking it all in.  Since Mom works there, Caroline also got to enjoy the perks of watching each morning and seeing her part.  Jack's been asking a lot of questions about Bible School and he is really wrestling with some neat concepts.  The concept of the size of God is definitely a tough one for us, but especially for a 5 year old!

Anyways, here are some fun pics of our day of fishing and cooking hotdogs and smores in the backyard of their house.

She didn't want help!!

Grammy helping her catch the first and only fish of the day!

Reeling the big fish in!

When I told her to hold it, I meant the line.  I was surprised when she actually grabbed the fish!

So fun

Grandpa and Jack trying hard to get one too!

She loves to put her face against mine for pictures.  I can't say I mind!

Proud of her marshmellows

Jack kept putting his against the wood...I don't think it was an accident

He loved this part

Can't believe this is my "little brother"

Some things don't change though

Again, face to face pose

And with Grammy

Thanks for a great visit!

Fun with YouTube

Thank you, Ashley, for showing me how easy YouTube is to load and share videos!  I am loving it.  Videos are hard to load to a blog, but I'm hoping now that they are on YouTube, I can just pass them over.  Let's give it a try!

Here is Jack showing us his outfield dance.  So focused!

Caroline loves to sing...all the time!

She also loves to dance...all the time!  She often turns the radio on herself.

Here is Jack going from 1st to 2nd base.  A bit of  a delay running and then an interesting path!

Last Day of Swim Class

These guys LOVED swim class this month.  I can't believe the progress they made.  I'm really excited that we joined the Y and will be able to keep practicing.  I was able to find these backpack floats online, so we will have those to work with.  That makes me feel better too.  I don't know if I will ever be able to relax with them around the water.  I guess my days of reading a book while they swim  are still several years away!

This one takes a comment.  See Jack there on the left of the picture?  Caroline is right behind the 2 girls at the front...

Where did Jack go and why does Caroline have such a big grin?  She dunked him!