Tuesday, August 31, 2010

Something's up

Every once in a while Emily will get very whiny.  Sometimes it means nothing.  Sometimes it means that she's getting sick.  Sometimes it signals the start of a flare.  This morning she woke up that way.  I'm hoping it means nothing more than maybe she didn't sleep well?  She knew that she had labwork today.  Usually that doesn't bother her too much anymore, but today she wouldn't get up, wouldn't get dressed, wouldn't let me help her dress.  When she's like that she'll run & hide, crawl around, and generally act like she's two.  In some ways I can't blame her.  She cried pretty much all the way to All Children's Specialty Center for her labwork, and most of the time there.  She finally calmed down after the needle went in.  It kills me on those days when it's so hard for her.  It truly just isn't fair!  Not when you're 8 years old, to have to go so often.  She was pretty calm by the time I got her to school.

Her teacher called me this afternoon to tell me about the breakdown that she had in her math class.  She has my math block.  (No, I haven't told her about my previous fear of math, & I have overcome it for the most part!)  She has taken it to a very high level.  Anything that she has to work at she gets angry about.  We're working on figuring out a solution, but I think that today's outburst occurred from whatever made her so cranky this morning.  After dinner tonight she told me that she felt dizzy.  She has never, ever told me that before.  She asked me to check her temp but actually it was a bit low at 97F.  We'll just have to keep an eye on her.  She can't tell when she's sick, so we need to be vigilant.

On a happier note, today I took my placement tests for college!  Due to never having taken algebra, I knew that I would need some math classes.  I had forgotten a lot- including stuff that I taught myself just last year.  I didn't do the greatest on my math, but I'm actually happy about that because I crave the refresher & challenges of new material!  My English, however...  I worried about that because I had forgotten a lot of the rules.  I haven't gone over the rules since maybe 1991 or 1992.  I was confused because I was expecting the test to last 2 hours.  I was finished in an hour & 3 minutes.  There was no essay.  I was looking forward to the essay.  The reason there was no essay?  A score of 100 or higher on the reading & sentence structure qualifies one for honors classes.  I had 101 on my reading and 117 on my sentence structure!!!  Non-believers skip here:  Thank you, God for helping me to pass this test!  I know that it is in your plan, which I'm trying my best to abide by.  Thank you for giving me the strength, the courage, the knowledge, the serenity to do this.  I know that you were by my side the whole time.  Thank you!!!

Needless to say, I am very proud of myself, though I don't know if that was really me in there or not!  I just can't believe it.  I'm so excited to start on this new journey.  By the end of it, I will be qualified to really properly take care of my baby.  Of course, by then she'll be an adult, but that's ok!  I want to do this right... not fast!  Bedtime for me.  It's been a crazy, exhausting day!  If ya'll would, prayers for the bean, please!  Thank you!  :)

Monday, August 30, 2010

Things that make my heart melt

While it will never be the life that you want for your child, having a child with chronic health problems has some wonderful blessings that go with it.  I have an especially close relationship with my children, partially (I believe) because they know that we will go to the ends of the Earth to help them, we appreciate them for who they are and don't try to change them, and because we know when to be gentler, when they need us.

Emily's hands are affected more than any other part of her body.  It makes it very hard for her to write.  On a good day they are swollen.  That said, it is very difficult to decipher her writing, but I found something tonight that I found so sweet, so beautiful that it just really made me melt.  I went into her backpack to make sure that she had everything that she will need for school tomorrow.  I found something that I hadn't noticed on Friday.  At first I thought that it was a birthday invitation.  However, the envelope simply said "Mommy".   Inside I found this:
"Dear Mommy,
I am having P.E. outside during recess and I am having fun. But I am pooped out from the sun.  It is hot, I have to sit out a lot.  But I (illegible)
Your little girl,

So, I'm thinking here I have this wonderful, sweet, precious, fragile child and during the middle of a busy school day, she's thinking of me.  How special is that???  It's been a hard month for her, and it seems to be getting tougher.  I think I'm going to try to move our rheumy appointment up a week or two if we can.  She's taking two baths a day lately, and telling me tonight that she was so stiff that she couldn't get up.  She asked me for help getting dressed today.  But she's so sweet, her personality so charming that we never mind.  It's the people like her that take every day as a wonderful new challenge, that fight without complaining, that make the best of every situation that really have it right.  Problems are just challenges waiting to be worked out.  If you can approach them with optimism, you have a greater chance of success.  That is how this little bean lives her life.  That girl is my hero.

Monday, August 23, 2010

Our elementary school ROCKS!


As always, there's so much going on!  The staff at Emily's school has continuously been a huge help & even a source of support.  For one thing, I'm speaking to her class tomorrow about her conditions.  In the past, more of her classmates than not have known about her arthritis & such.  Now she has only a few students that she knows in her class.  I want to prepare them, for one thing.  I'm not sure how other kids her age react to her turning purple.  I don't want them to be scared.  I don't want them to think that she's getting special treatment when she learns how to type and gets to write less.  Or wonder if she's ok if she's out a week or two.

I've been in touch with their nursing staff all week.  They had me call the doctor's office to fax a new note so that they can administer Motrin to Emily throughout the day.  The school nurse called me on Friday.  It's important to discuss changes in meds, side effects, current problems, etc.  I mentioned that the Enbrel just isn't cutting it lately.  Emily's been very stiff, and lately she's asking us for her Motrin often.  I am hoping that she can hold off on a full flare until her next doctor visit.  We discussed that, and changed her status slightly.   The new changes will make it possible for her to stay home the next time that she has a flare that incapacitates her.  She can then be put on the Homebound Program.  I sure never thought that I would have to worry about anything like this years ago.  Right now I feel like there's a ticking time bomb just waiting to go off.   Her doc didn't think that the dose change on the Enbrel would work long, but it was worth a shot.  Anyway, the nurse is going to contact our rheumy's office to see if there's anything else that they think should be changed.  It makes me so happy that they are so caring and wonderful about it.  I suppose it helps that Em's an absolute sweetheart.  Her strength will never cease to amaze me. 

Ya' know, I wake up almost every morning with a  feeling of excitement!  Good things happen more often than most people notice!  I'm excited about the kids school year, excited about my school year starting (hopefully) soon, excited about endeavors for the Arthritis Foundation, and for myself to hopefully help some parents of newly diagnosed children.  I'm cautiously excited about her next rheumy appointment.  I'm hoping that he'll make the change to Orencia now.  If it takes 3-6 months to work fully we need to start it NOW.   There are so many good things on the horizon.  I'm working on preparing for my meeting with Congressman Bilirakis.  That's a bit scary, but also very exciting! 

If you haven't had a chance please watch the video from the previous post.  It hit me hard tonight.  I may not be doing my best in all ways 100% of the time, but one of the most important things that I've learned this year is that it's better to fight for some things than just hang passive as I usually do.  I've learned that no one else will advocate for our families, for us if we don't.  I don't just mean for arthritis.  I mean for other health conditions, maybe school issues, health care.  There are so many things that we should stand up for, but usually don't until we're pushed into action.  We're so content to sit back and watch the world going on around us, but there comes a time when we need to fight for our families.  I realize that the song talks about this on a much more personal, intimate level, but honestly when I heard it I thought "Wow.  Yes, I am doing what I can.  And I have a very happy household."  That is awesome.  Ashley doesn't really have a religious belief yet.  She felt weird and unhappy when I was dragging her with me to church.  Far be it from me to push her away.  And that's ok.  Don't get me wrong... I pray to God that she'll come around.  I want her to believe in something, but I can't force her.  That said, there is God all over this house.  No, not like in paintings and books and magazines.  I mean, with Jesus in my heart, He gave me joy.  My joy has brought joy to the rest of the family.  Ashley says that she laughs more at home than she does at school.  How many almost-16-year-olds can say that?  Where there is laughter, there is no anger.  If you open your heart, try to understand those around you, put yourself in their position... you'd be surprised how much nicer you become.  Let go of the little things!  Do you think it would matter if your spouse died tomorrow that he or she didn't get the laundry done?  Do you think that you should be trying to control their actions?  Why should you?  To control is in a big way to change.  Why try to change those that you love?  Everyone has a right to be themselves.  I'm messed up & broken & I love it!!!  It makes me feel so free to know that we all are!  It's ok to mess up, as long as it's not always the same thing over and over.  We treat our kids like people because that's what they are.  And they're happy, respectful, and sweet children.    That's all that I could ever ask for.

Tuesday, August 17, 2010

Back to School! (Half O.T.)

I always feel that we are blessed, but sometimes I feel that we are *extra* blessed.  For one thing, our children are all in the "right" schools for them.  I'm not a fan of the Florida educational system, but as far as FL schools go we are blessed.  This year, Emily got a teacher that was formerly in the ESE area.  The ESE teachers deal with children with all types of disabilities from learning to physical to mental.  Not only is this exactly what she needs, but she had worked with Emily before and Em is very comfortable with her.  She's a little sad that her two best friends are in a different class, but she's not the type to get down about things.  She's making the best of it.  She grew up a lot over the summer. 

The school made sure that I filled out a new medicine form for her.  They try hard to take care of her.  They have a care plan in place, plus she has an Individual Education Plan, and a 504 Disability plan in place that they helped to create!  I love so much that they care.  I have heard that many arthritis kids are in schools that don't want to see a problem (it is invisible), or blame the parent, accuse the child of faking, etc.  I truly feel blessed that she is in a place that protects her and has compassion for her.  Who could ask for more?

My Zachary is also with a teacher that he knows.  Not only did she half Emily half of the week last year but her son is in our scout troop!  Zach knew her more from outside of scouts, as a mom to her son and baby daughter.  He's absolutely thrilled!  I had requested either her or the other teacher that Em had last year.  They are both marvelous!  They are very kind, and they care.  Depending, he may end up with both teachers like she did.  That would be just fine with me.  I was worried about him because he can be a bit weird- he's a sensitive guy!  He hated school last year.  So far, though, he's happy!  I'm so glad.  I was worried about that.  We kind of suspect that he's brilliant but doesn't want everyone to know.  He'll read things effortlessly that I would never have thought that he could read.  He is good in math.  He's TOTALLY OBSESSED with batteries.    I dunno.  I take it as a good sign.  He's always trying to figure out how things work.  It's good.

Ashley is happy to a point.  She was really excited this year because she was supposed to take Driver's Ed.  The FCAT messed that up.  This is the horrible thing about this test.  This child is so rebellious that she READS.  Like, in her spare time and the whole summer, she spent her time drawing, reading, and writing.  All summer that's all she did.  She's writing a book.  She's spent hours planning out characters, and writing.  She blew reading on the FCAT by just a few points.  The funny thing about that is they think that the people that graded the tests messed up, and many more kids failed than should have.  So, because of what is most likely their mistake, Ashley has to take Intensive Reading instead of Driver's Ed.   She was angry about this also because this blows her plan to take two years of French classes.  (Yup... she's a rebel.  LOL!)  She is choosing to rise above it and use bigger words in class than her teacher!  :)  I've read her writing.  It is very eloquent!  I feel for her, but there is no getting out of that class.

I look back on the last few months with Kevin losing his job (blessing, oddly enough), finally getting on the right dosage of medicine only to be told "Great!  We figured it out.  Now get off of your meds until they are all out of your system just for this one test, then you can go back on them."  So, he's been off of his thyroid meds for the past month and a half!  Do you have any idea how many things ones thyroid can affect?  Really?  I had read up on it years back, but I had forgotten how messed up it can make you.  He had his thyroid removed back in February 2009, so to be off of his meds has been devastating.  He's had headaches, can't sleep, whole body swelling, stiffness, mood swings, extreme fatigue.  He had a hard time brushing his teeth.  He can't stand for long periods, his back is acting up.  He keeps going numb!  He'll be standing, or even walking and his legs go numb.  His hands and arms, as well.  It affects his concentration, his thoughts.  He's been in a cloud, he says.  Through all of this he's continued job searching to no avail.  I say thank God!!!  If he had gotten himself a job in this condition he'd have lost it already.  Things have come together, for the better.  He's been back on his meds now since Friday.  Slowly but surely he's starting to feel better.  This isn't the way that he wanted to spend the summer, but it's the best time to go through it.  At least he didn't have to worry about leaving to go to work.  Now we just have to find out the results of the test.  It was a bone scan for cancer.  No one has bothered to call us back yet.  They also should have done this test after they first removed the thyroid since they found just a speck of cancer in it.  I'm sure there's nothing to worry about, but it's hard to not worry.  They should have called back Friday but they didn't.  Time to find a new doctor.

On that note it is bedtime.  I'm exhausted!  Today we ran errands, took Em to therapy, went to Cub Scouts...  Busy day!  Good night!   : )

Wednesday, August 11, 2010

What is JRA & why do you make such a big deal about it?

It occurs to me that many people don't understand how serious arthritis can be.  Several times this week I've heard "Just be happy that what your daughter has isn't serious!"  One day, my child will be told that she can't be sick because she looks ok.  People will minimize her pain.  They will not understand.  Why?  Because it's invisible, and people don't understand that this isn't "nothing".  First of all, arthritis is the #1 cause of disability in men, women & children!  There is no cure.  It can be treated, but damage cannot be reversed.  What these kids have is NOT like what your grandmother eventually got when she was 80 or even 60.   Juvenile arthritis is all rheumatic in nature, an auto-immune disease.  Back when my parents were children, rheumatic fever was common.  Many of those kids developed temporary arthritis.  Other rheumatic diseases include Lupus, Scleroderma & Raynaud's.  Overlap Syndrome (Mixed Connective Tissue Disease) is also common, affecting 10-15% of the JA population.

There are many forms of Juvenile Arthritis.  Since there are so many, they get lumped together.  JA is an umbrella term for many different forms.  There is a form that only affects the back and neck.  There are children that have 4 or fewer joints affected.  Then there are the more severe forms. 

The "pauciarticular", now referred to as "Oligoarticular" is the type that affects 4 or fewer joints, BUT the kids that test positive for the Autonuclear Antibodies (ANA) have a much higher chance of arthritis of the eye.  There is uveitis.    "Uveitis is a rare medical illness that affects vision. Uveitis is the third leading cause of preventable blindness in the developed world.  Uveitis affects children, adults, and the elderly and is found worldwide in every race."

There is "polyarticular", which is what my daughter suffers from.  Some children are only affected by five joints, but others just get taken over.  Many of these children have had hips replaced, numerous jaw surgeries, & knee surgeries.   Before the newer biologic drugs came out many of these children became deformed over time.  I wish that I could find the quote, but what I remember went like this:  (from a FB post) "I remember when I went to arthritis camp as a child that many kids were in wheelchairs and / or deformed.  Nowadays, since Enbrel came out you can barely tell that they kids have JA."   (Thanks, Ms. Rabbit!)   I have no doubt in my mind that without Enbrel my daughter would be permanently in a wheelchair.  What is Enbrel?  Enbrel & Humira are TNF blockers.  They block inflammation before it can start.  Emily has 2 injections per week of Enbrel.  When her body behaves, she also has an injection of Methotrexate.  They're not exactly sure how MTX works... they just know that it does.  MTX is actually a chemo drug, but then it is used in much larger doses.  When her body allows, she has one MTX injection per week.  We are blessed that she only needs 2-3 shots a week to move.   Right now she is sad that she cannot take her MTX.  She can walk without it, but she's been very stiff, & her fingers are extremely puffy, as well as her knees & elbows.    Her hands are also affected by her Raynaud's & scleroderma.  They are going to teach her typing for her testing at school because writing is so hard for her.  And she's 8.  How will that be when she's 48?  And very soon her doctor is supposed to put her on a newer medicine that is only given via hospital IV, Orencia.  Yeah, that's not serious.  Did I mention that these are also immune suppressors, so these children are more susceptible to every bug that comes along?    Oh, and Emily has labwork done every 6 weeks to make sure that her white counts don't drop too low, and because one of her meds may possibly cause liver damage.

Side effects of long term JA can include joint contractures.  A contracture happens when a child alters the way that they walk in an attempt to lessen their pain.  After a long enough time of moving the wrong way the body reacts.  The joints and tendons ball up so often that they can't go back to normal.  This can cause one leg or arm to be shorter than the other.  It can also cause hip damage.  I guess that it's lucky that Emily has this in both knees. She's less likely to have hip damage because her legs are both equally messed up.

The next type that I will address tonight scares the heck out of me.  Systemic JA is like an internal arthritis.  Just think... I'll bet that you think of arthritis as a normal wear of the lining of the joints.  It doesn't always have to be joints.  Arthritis can affect the linings around the internal organs as well.  Systemic is usually found after someone notices that the child has unexplainable fevers daily.  They have to spike and fall at least once a day to be true systemic.  Often they are admitted in to the hospital and have every test known to man done on them.  At the end of 2 weeks the internists call in the rheumy's.  Usually the rheumy's can take the FUO "fever of unknown origin" and give them a name.  Systemic can really terrorize the body.   If you can, check out this note:!/note.php?note_id=387313903894, or visit the Sloan blog.  Systemic can kill our children if not properly treated.

There are other problems that my girl has.  Apparently, the turning purple is rare.  (Good to know!!!)  That one really freaks me out.  Every year it gets worse.  We have a drill in place at school with rice socks and hand warmers.  (Yes, we have hand warmers in Florida.)  Raynaud's is the overreaction of the blood vessels to cold.  Pretty much, they go into overdrive when she gets a tad bit cold.  Raynaud's can be a primary condition or a secondary condition.  Oddly enough, the secondary condition can be much more severe than the primary.  Raynaud's can affect hands, fingers, toes, ears, noses, and the tongue.  (How do ya fix that???)  It is more often associated with Scleroderma than JRA, but nothing about rheumatics is typical.  With the Raynaud's, Emily is ALWAYS cold.  She used to be able to wear dresses to school but now she can't even wear shorts in the summer without an episode or 12.  A true episode will start with the affected area turning white as the blood stops flowing, then purple as the blood starts to move again, then bright red as it all rushes back.  Eventually it goes back to normal.  If it doesn't turn white & purple it isn't true Raynaud's.   My little one sometimes gets these big, painful lumps.  They are so painful that if they are on her fingers she can't hold a pencil, and if they are on her feet she can't walk.  They can be bright red, or sometimes purplish.  We've been told that it's caused from the Raynaud's, but at the conference the rheumy that we spoke to said that it's Lupus Pernio.  We need to revisit that with her rheumy.  He hasn't actually seen them.  I've shown him a pic, but it's different than seeing it. 

Next is Scleroderma.  Scleroderma isn't an arthritis, but arthritis can be a side effect or an associated disease.  With Emily it's part of the overlap condition, MCTD.  Scleroderma can also be systemic, or it can be linear, affecting the skin.  Some have both.  Systemic, from what I have read, is similar to the systemic form of arthritis.  Emily has linear.  It is a tightening of the skin, making it tougher.  "Sausage fingers" are common in this type- very puffy, swollen looking fingers.  I couldn't tell on any other area for the longest time, but her doctor showed me that if you pinch the fatty part of an arm that is not affected you can pinch a big portion.  If you pinch an arm affected by scleroderma you don't get much of a handful.  Some days I can't get her needle in.  In some cases the tightening is severe and can actually make areas look deformed.  IE... a wrist affected by scleroderma can tighten enough to make a finger stick straight out.  A knee affected won't allow the leg to straighten.  The most common medicine for this is the Methotrexate that my little one can only sporadically take.  She has labwork every 6 weeks like clockwork because they worry about liver issues with MTX use, and often when she's on it her white cells crash.  Apparently, that doesn't normally happen either.  

And so, thinking about the short-term and the long-term pictures,  I think it would have been better for her if she had leukemia.  MOST types of leukemia have a 98% cure rate.  It invades, it's treated, it goes away.  Most of the time it stays that way.  Arthritis is forever, breaking down joints, bone & cartilage  with every flare.  Making these kids suffer in ways that most adults don't have to.  Most of the time they don't complain, they just carry on.  Even when they hurt, they keep going as long as they can. 

Monday, August 9, 2010

Funny how things change

Well, this morning found Zachary & I visiting his dermatologist.  Just a re-check from his last appointment, nothing new.  I had mentioned that I had tried to fill his prescription for his Clobex shampoo only to find that we had a $325 co-pay!!!!!  I almost died!  I was actually looking for an alternative when his doc came out and handed us a whole box of samples!  Of course, we discussed the possibility of psoriatic arthritis.  So far, the only pain that Zach has related to us comes when he's not getting enough attention.  It's never for long, and when I look the area is never swollen.  That said, I can't say that the possibility doesn't worry me a great deal.  He's doing well for the moment, under decent control.  She gave us some Vitamin D cream to try, too.

I found out something interesting from the doctor.  She had asked me if our rheumy had gotten another rheumy in his office yet.  Apparently, he has been trying for years to convince USF to add another doctor to help take some of the load off, but they won't do it.  I really don't understand the whole deal with doctor's sometimes.  There is a severe shortage of pediatric rheumatologists in the country.  That is huge because often the juvenile versions of these rheumatic diseases is totally different than the adult forms.  There are 12 states that do not have a pediatric rheumatologist.  In fact, Montana, Idaho, Wyoming, Nevada, North & South Dakota have none.  Florida has 4, I believe.  Our one in St. Petersburg, 2 in Gainesville, and I believe one in Miami.  Florida is a big state.  Gainesville is 3.5 hours away from St. Pete.  I'm not sure how far Miami is, but Fort Myers is 3 hours south of St. Pete, and Miami is still quite a bit further.  Almost 300,000 children nationwide have been diagnosed with rheumatic diseases, (more than juvenile diabetes, sickle cell anemia & cystic fibrosis combined) and USF doesn't see the reason to add?  Now, maybe I have it wrong.  Maybe they can't find another pediatric rheumy.  That I could completely understand.  But I'm pretty sure that she said they won't send help.  That is just messed up.  I really feel for our doc.  He is always at work late, he is pretty much the only "on call".  I know he said the state pays his salary so that's kind of nice, but that office needs more help!  They need more people manning the phones, a better phone system, at least one more nurse and another doctor.  I'm so angry about this that I may write to them.

On our way home I got thinking back.  It used to be that we couldn't leave the house without a crisis.  We had things happen to us like someone throwing up every time we went somewhere (Zachary puked at every extreme emotion and Emily would cry & cry until she threw up-  often nothing could console her).  I can't tell you how many times we had to pull off to the roadside because of one or more reasons.  She would scream every time we went anywhere.  I understand that now.  I was a wreck, the kids were a wreck.  I would be the one with 2 screaming kids leaving Walmart and have the buzzer go off, not be able to find the receipt because of juggling screaming kids and have the security guard harrass me.  (Yeah... that happened.)  When they were really little, Zach would cry because Emily was crying.  He was such a chillin' little dude, but when she got going it would really upset him.  They never screamed because they wanted anything.  I'm guessing that even way back when it was her arthritis.  She'll get a little red, but she doesn't swell outwardly the same way that some kids do.  In any case, I was thinking how greatly our rheumy, Methotrexate & Enbrel have changed our lives, how much easier it seems in so many ways now, & how blessed we are.  We truly are.  I always knew that she wasn't crying "because she was bad".  I don't believe that children are bad.  I think that bad children are created.  Either way, I always knew it was different with her.  I just didn't know why.  It's so funny to think back.  Back to when we couldn't go anywhere without tears and vomiting.  (Good times!)  I couldn't enjoy my family then.  It was really hard to.  Already tired from a hard day at work, coming home to screaming was not much fun.  I know that I can't change the past; all that I can do is learn from it and try to understand it.  I try really hard to do just that.  I can, however, try to control some of the future.

Never having followed politics AT ALL, never having found any interest in politics AT ALL, I am pleased to announce that I have a meeting with Congressman Gus Bilirakis on September 13th!  He has voted against the Arthritis Prevention & Control Act in the past.  Here's hoping I can change his mind!  ;)  I know that it may take some persistence, but I am willing to try.  I'll keep ya posted  :)

Saturday, August 7, 2010

Here we go again

Well, as I predicted, since going off of the Methotrexate injections Emily is slowly flaring.  It started as stiffness all of last week, along with a slow down.  Two nights ago  I noticed that her elbows were red and where the bone poked out was all white.  Very inflamed.  Today her hips are hurting her, and her knees and fingers are puffy again.  Her next appointment isn't until September 27.  I'm going to have to make it sooner, I think.  I know how crazy busy her doctor's office is, and it's hard to get a call-back.  Plus, with school starting soon, people are trying to get in beforehand.  I'm hopeful, though. 
The other news to note is that I've got a tentative appointment set to see our representative, Congressman Gus Bilirakis!  The JA Conference really had me energized, and helped me to figure out what I was doing wrong as an advocate.  Bilirakis has not given support to arthritis research & funding, so I have some obstacles to overcome.  His district health officer seemed rather curious, and really sounded sad that I couldn't come in today.  I've also got an email in to our rheumy's office to see if I can get lab evidence to help out a research study out of Emory Medical School, and I'm waiting on info from Children's Hospital of Philadelphia for a study they are doing.  Both are trying to find DNA markers; one is focused soley on the patient, the other on the patient & parents.  Finally, I'm trying to figure out what to do in September to help the C.A.R.R.A. group by gaining some community awareness.  They are the group heading up the Juvenile Arthritis Registry!  That is a very, very important step in gaining a standard of care and evidence of side effects of medications.  Currently, they are playing roulette.  The choices suck either way.  Either you take the meds and hope for the best, or you can't walk, you're wheelchair bound and disfigured.  Since the meds seem safe in adults, and so far the ones used for children are pretty good, we'll take our chances.  It's terrifying either way, but I'd rather my child have a good quality of life if there is a way, and there is.  Unfortunately, I think our way will be changing, our comfort zone already tearing apart.  I do believe Orencia, an IV-given medication isn't very far off.  Anyway, it is way later than it should be, and I have to be at work in the morning.  Have a wonderful evening! 

Monday, August 2, 2010

The Spoon Theory written by Christine Miserandino

The Spoon Theory written by Christine Miserandino

End of the JA Conference :(

Going home is so sad.  I missed my family desperately, & Emily was not at all her normal self without her brother, her strength!  But the conference was an amazing experience for Emily & I.  One can only research so much before feeling "tapped out".  Before I went that's the point that I had reached.I couldn't find anything else on JRA that I didn't already know, and I really couldn't find anything on Mixed Connective Tissue Disease at all.  My goals for the conference were to find out more about MCTD, talk to some other parents that deal with Raynaud's, try to learn whatever else I could, connect with people- especially the other Florida families, & find out more about advocacy.
On Saturday morning during the general session, they had a group of adults that were diagnosed as children speak.  Sometimes I think of how horrible this disease is, then I think of how many years Emily will probably live in pain & it makes me sad.  These speakers all agreed that while it has its disadvantages they wouldn't trade it.  They all gave us a large measure of hope.  They are successful & happy people.  Boy, did I cry a lot listening to them!  Their words gave me huge comfort.  After the break it was time to move on.  I chose the Roundtable Session on MCTD's.  I wasn't 100% sure we even belonged there, but there was only one way to find out.
Not only did we belong there, but it was only 2 other families, a rheumatologist & myself.  What I learned in that session was completely fascinating to me.  The little lumps that she sometimes gets that are so painful that she can't walk/ can't hold a pencil?  Those are called LUPUS pernia.  I need to see if her blood tests positive for an RNP antibody.  This doctor places most of her issues in the Lupus family instead of the RA family, though in her case her arthritis would certainly be considered a primary disease.  That would also include the Raynaud's, and quite probably would explain her upper GI distress that she's had in the past.  (I used to have to carry Prevacid in my purse medical collection).  I knew that her nails & fingers would show damage, but I did not know that they can show *risk*.  She may even have muscle inflammation.  This roundtable was absolutely 100% what I needed.  I got to drill the doc on her Raynaud's also.  I feel justified now in pursuing medication for it.
Even classes that you're pretty sure you know everything are good to sit in on.  Even if only to find out that you really do know everything!  (LOL! Just kidding!)  I did learn more about some new meds, &  I asked about how the doctor in Pain Management feels about magnet therapy.  He doesn't really know what to think yet.  I think it works so I guess that's all that matters.  This doctor seemed really open to new ideas so it seemed very valid to ask.  Someone else asked about medical marijuana, but apparently it hasn't been thought about much yet.  No, I would not let my child go get high, but the medical version is much different.  They keep it clean- it's not laced with additives or chemicals.  It can come in pill form, and it's proven to be safer than the narcotic family.  Anyway, it was nice to have it come up.  I have wondered about that.
Saturday's last class that I chose was on insurance & programs.  I learned a few tricks from that as well!  The speaker passed out some helpful information, too.
The party Saturday night was awesome, with balloon animals for the kids, face painting, photos and wonderful company!  Sunday gave us the awards ceremony where we heard of these ordinary people (many with JRA!) doing extraordinary things.  It blew me away how much some of these people have done for the AF &, in turn, the cause.  It's exciting to be in the company of these people, and see their accomplishments.
I came to the conclusion this morning that although JA SUCKS & I would never wish it on anyone- especially a little person- some of these children flourish because of instead of in spite of their disease.  Some of these children grow up with parents that care, that drag them around to learn how to advocate for themselves, that meet the governor & address Congress, and gain support for the causes that they believe in.  Some of these children develop a passion so strong that they don't need their parent's help anymore because they've been led so strongly through the years.  These people become teachers, social workers, nurses, or work for the AF.  Maybe they'll even become scientists to help make new drugs.  They have a HUGE support network in the Arthritis Foundation, people that will stand behind them.  They make new friends at the conferences every year, and get to see old ones.  These kids "grow up" together & can help support each other.  I'm sure that may not help my daughter's legs stretch out on a hard morning, or help her walk deep in a flare.  But it can keep her mind above water, her head clear.  There is HOPE.  There is LOVE.  And, with hope, there is PEACE.  Could any of us ask for more?