Pain management and coping techniques

Pain Management and Coping Skills

Pain management has been somewhat of a hot topic lately.  Since I am on a little vacation, now seemed like a great time to talk about it.  When one has chronic pain, one needs to figure out what works for them to help deal with it.  We have found several things through the years.

Baths and water activities

Emily loves her baths.  Warm baths have a way of taking some of the tenderness out of sore joints and muscles. Sometimes we use epsom salts, which are known to help quite a bit.  Sometimes we use a scent that she really likes, like lavender.  Sometimes we use arnica oil, which is also really good for drawing out pain.  On really bad days she will use the epson salts in combination with an oil.

Water activities, like aquatherapy or water aerobics, are also quite helpful!  The joints are supported better by the water, causing less pain but a harder workout.  Many people that won't do a traditional workout will at least go walk around in the pool.  It is especially useful for people that have severe osteoporosis in their knees.

Paraffin baths

There's nothing like hot wax to help take the inflammation out of the hands.  Paraffin baths come in a variety of sizes, some with adjustable heat settings.  We have also found that you can add things into the wax, such as soothing oils.  We added some lanolin and essential oils to ours.  The longer you can hold the heat in, the better it will work.  It can be used for hands and wrists or feet and ankles.

Essential oils

Yes, we were very skeptical at first.  We really did not put much faith into them to begin with.  I know children that need morphine.  While they really needed it and it wasn't really by choice, it was an option that I did not want presented!  Lidocaine patches have worked for others in the past, but they did not work for my children.  We were running out of options, so we thought we would take a chance.  I still cannot believe how well the doTERRA Deep Blue works!  We use many oils now for many things, but our favorites are definitely the Deep Blue, and their headache blend, Past Tense.  Emily has a lot of headaches lately, partly because of her cortisol levels, partly because of the new hormones, and partly because of the sinus pressure the poor kid has in her head.  The two oil blends have helped her more than anything.  Also, the Deep Blue took her knee pain down to almost nothing.  (Please feel free to PM me if you are interested!  I am NOT a salesperson, but I can sell them if you are interested.)

Biofeedback and psychology

I had never heard of biofeedback before, but it's actually pretty cool.  When I was a kid, I was involved in every possible theatre class and production around.  My wonderful music and drama teacher in high school taught us relaxation techniques.  I tried to teach them to Emily, but, well, my last drama class was 1991.  I searched for apps, but at the time I couldn't find them.  I kind of let it go as a lost cause, until we started seeing our pain management doctor.  She is NOT the type who wants to push pills.  Quite the contrary; she did not want to add pills.  She decided to send us to biofeedback and psychology both.  Child psychologists are not the easiest to find, but child psychologists who deal with chronic pain patients seemed to be even more difficult.  We finally found one, but we had a 2 month wait to be seen.  We squeezed biofeedback in around psychology.  This was the coolest thing!

Maybe it isn't as amazing with adults because many adults have their minds set that this will not work.  (That is what our specialist told us, anyway.)  They talked.  Emily was hooked up to monitors.  Yeah, really.  They attach sensors to the sweat glands, and then show you how nervous or calm you are on the screen.  The great thing is that we could see that when we mentioned broccoli, her stress level shot through the roof.  (Seriously.  It's bad.)  However, after learning a few techniques, she could also see her stress level go down.  The cool thing about that is she could see how she could calm herself down.  The great thing is that these are techniques that she can use for the rest of her life.

Movement

I know- nobody wants to hear it.  I know I don't.  But it's true.  The days that I don't move, I tend to hurt more.  The days I make myself go to the gym, I have more energy and feel better.  If you can strengthen the muscles around the bad joints, the joints will have better support and hurt less.  Besides, we all know it is when we stop and try to re-start that we hurt the most.  Emily has to play on the Wii Fit at least three times a week.  I try to hit the gym as often as I can.  And I kick Zach outside to play with his friends.  

I have an amazing friend, also from high school, who has lupus.  She has had more back surgeries than  I can bear thinking about.  She is running marathons.  Yeah.  She totally puts me to shame.  I've been thinking lately that if she can do it, I can do it.  Right?  Maybe in time....

Stress Balls

For our hands we use stress balls.  Squeezing them can help to relieve some of the discomfort.  It's also good therapy.  Using your hands as much as possible is very helpful.  It can be hard when your hands are aching, but even wiggling them is good.  

Any activity is good activity! 

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!

Finally! An October spent inpatient ONLY for meds!

It was October 13, 2010 that Emily was diagnosed with Dermatomyositis, and officially diagnosed with Mixed Connective Tissue Disease.  That week, she was kept inpatient for six days for heavy-duty steroids and other meds, along with a plethora of tests to rule out other not-so-nice diseases.  It was last September 26th that she had the port placed, and it was early October when we realized she had staph in there.  That led to an almost month-long stay.  It broke her heart to have to miss the fall carnival at school and Halloween.  Granted, she was able to trick-or-treat at the hospital, but it just isn't the same.

I am happy to say that this October the bad chain was broken; we had our typical overnight for meds, then we were free to go home!  Thank you, Lord!

I didn't mention Zach again this time to our rheumy.  I believe last month was just a fast psoriasis flare, likely due to the change in weather.  He has a small spot or two, but for the most part it isn't big enough to concern us.  I'm keeping my eye out, and I know he will tell me if anything changes.  We are planning on using the Body Check Journal to see if we can establish patterns for both kids.  If you have ANYTHING that you are trying to figure out (rashes, erratic behavior, allergies, flares, etc) I strongly recommend that you try this journal, lovingly made by one of our favorite arthritis mom's.  She has discovered so much about her daughter by doing this herself, which is how she thought to make the journal!

Em's appointment went better than I thought it would.  Our rheumy was sick, and it was a bit hard to understand him over the noise and through his mask, but we decided together not to make any changes yet.  He said that studies show that Rituxan, Orencia and CellCept in combination are proven to help things like her throat issues, but it isn't something that we can do for more than a few months.  He doesn't want to backtrack before giving the combo a fair shot.  Since it's only been 2 months since she's been on CellCept, and 5 or 6 for Orencia, he wants to be patient for just a bit longer.  I'm good with that.  The biggest fear is her throat, so if this combo will help her throat the most, we will wait.  Monday and Tuesday she received her Orencia (30 mins), Rituxan (4 hours) and IViG (over 12 hours).  Wednesday is the day for her to recover from meds, and for me and Zach to recover from stress, and lack of sleep.  Poor little man has a cold, too.

It is crazy how much has changed with Em in the past month or two.  When people ask me how she's doing, I have no idea how to answer.  Here's why:  yes, the throat problem is pretty big, and scary.  However, she has been running around, trying to hoola-hoop, and she has been giggly.  Really giggly.  She sounds.... happy!  On the flip side of that, for a few weeks there she was taking 2-3 baths a day.  Usually she does that when she's hurting or stiff.  I have no idea what to make of it, but I take the running and giggling as good signs.  It's been so awesome to be home with them more!!!  I expect them both to be more giggly when we change our homeschool program.  We are just worn out from the amount of work they have around other things, like therapy.  We found a new program that I suspect will be the winner for us.  I know two families that use it and absolutely LOVE it.  They have similar situations, so I think this will work well for us.

The steroid weight has started dropping more!  She started steroids at 42 lbs. (and really under weight.)  Two months later she was 75 lbs.  Today she was 60.5!  Her clothes are falling off of her.  I had to go buy her new jeans.  She fit into her FAVORITE pair of old pre-steroid jeans!  So exciting!  I realized tonight that if she is wearing a large shirt you can't see her belly anymore.  This is helping with the activity level, I'm sure.  Oh, I am so glad!  Next month I will ask about the next decrease.  Currently she is on 3mgs a day.

Speech came into our room this morning for a consult, but she was so tired that we couldn't wake her.  Our doc wanted them to see if there was anything they could do to help her swallowing issues.  Being the skittish type, she was afraid of talking to them anyway.  I will have to psyche her up for it next month.  Another thing that was supposed to happen was an ultrasound of her hands.  This is more for the doctors benefit for now, but I suspect that it could have long-term benefits.  He is doing an informal study on ultrasound for Scleroderma hands.  I was unable to get specifics out of him, but hopefully that will also happen next month.  I would like to have the opportunity to help with some of the science involved; being a test patient is great when it's painless!  It may even help her one day.

We are talking much more formally around the house about going gluten and processed sugar-free.  We are going to try!  I expect that it will take quite some time to make the full change, but it may well be worth it.  We shall see!  I certainly want to try.  Since getting into making our own household cleaning products, I have been looking into making moisturizer, lip balm, shampoo, soap and laundry detergent.  I am hoping that this may help.  It can't hurt!  

Last thing to add is that we have a blog guest post up! The Arthritis National Research Foundation has made it their mission to highlight stories like this.  It made my day to see this made it up!  And I believe that is all.  I am so exhausted to I cannot recall anything else.  I am heading to bed.  Have a wonderful day ahead!

Our new plan!

Ok, so again I am completely exhausted.  Forgive me if this doesn't make any sense, but I want to get it out before I forget it all.  We had another crazy day.  Hospital time runs at a totally different speed than real time.  It really seemed like I woke up, blinked, and the day was gone.  I didn't even get time to just chill out on Facebook.  Emily got quite a bit done.  She was up early, got some TV time in, went to the playroom for a while, found a book to read that she enjoyed, played some video games, made some creations and watched a couple of movies.

I started my day by running 2 toys that were given to us to take to the infusion room.  I figured that while I was there I would get a copy of her labs.  I figured that they may be off a little, but I didn't expect them to be completely out of whack.  I was shocked at how many exclamation points there were.  (They indicate levels out of range.)  Her inflammatory markers are elevated, but with an infection that is to be expected.  Her urine was all messed up, but they said that looked more like a contaminated sample.  (Phew!)  Her liver enzymes (used to measure her muscle activity) look fantastic!  Those running amok is one of my biggest fears.  Almost everything else was off, though.  That worried me, of course.  I patiently waited for a few hours to see a doctor.  Praise the Lord, we have been through enough of this to not worry just because something looks like it may be a problem.  Problems usually seem to not be so glaringly obvious with us.

Towards the end of the day one of the doctors came in.  Before I go further, let me say that one thing that I love about our rheumy group is that they don't just treat what looks rheumatological and hope someone else will deal with the "other stuff".  Dr. E asked the Infectious Disease doctor to come talk to us.  Let me tell you- I was soooo excited to see her.  Dr. E had told Dr. V that she had ordered the Rocephin antibiotic because it's very good for sinus infections.  We explained once again how the past few months have gone, listing each antibiotic and the amount of time prescribed.  We established that I need to be more firm with these other doctors when it comes to prescribing antibiotics for an actual infection.  I admit, that's not something that I'm good at.  I feel that, while I do probably know more about rheumatology than they do, it's not my place to tell them how to do their jobs, and while I should have a medical degree, I don't actually.  We talked about that for a while.  She said that she would never prescribe less than a 21 day course of antibiotics for anyone for a sinus infection- never mind an immune suppressed child!    I will now be more firm on that. 

Despite me asking the ENT's to send over her file, despite me signing paperwork on Monday for them to do just that, they haven't done it yet.  Dr. E had her nurse practitioner working on it, too.  That said, they could only rely on what I was told by the ENT's from the first culture, which was that it was weak to Augmentin.  Knowing that Augmentin was the only antibiotic that seemed to do anything (except for a few days before her scraping when it seemed to stop working) they prescribed a 21 day course.  They also want us to keep doing IViG monthly to boost her immune system back up and then maintain it.  Yesterday's labwork showed her Igg at 435.  They usually do IViG for levels that fall below 500.  I feel a huge sense of relief with this. 

As I said in yesterday's post, we will wait two weeks to resume her Methotrexate, and then it will be at a lowered dose to begin with.  She's one of the few kids that loves her Methotrexate because it helps her to not be so itchy.  Dermatomyositis can cause severe itchiness, and even though hers is much better now than it was since her muscles aren't flaring, it's still annoying.  I'm more excited about the Prednisone decrease!!!  Again, a drop from 4.5mgs (1.5mls)  to 3mgs (1ml) is huge!!!  She'll have two weeks on 1.25mls, but that's ok.  It's been so long since she's had a decrease.  I realize that the slower the decrease the less chance of flaring so I wasn't complaining, but perhaps on the new dose she'll be able to lose some more water weight.  She is still so self-conscious.  And that should help her growth to get back to a more normal rate.

Last but not least, we had a roommate this time.  Bless her heart, the girl has Crohn's Disease.  She was given the option between trying Remicade via IV or trying a feeding tube at night with formula that would help to heal her colon.  She really thought that the tube would be a good idea.  That poor girl cried and cried, begging her mom to take it out.  Before we left she decided that she would try Remicade- despite having a huge fear of needles.  We were able to help them feel more confident about their decision, and give them some idea on what to expect.  God puts people where they need to be.  I truly think that we may have helped them a bit tonight.  I hope so!!!  I am hoping that Emily feels much better in the morning, too!

*Written at 12:04 A.M.*

How are your kids doing?

Every day I have people ask me how my children are doing.  I truly appreciate this.  It can help me loosen up a little bit, just knowing that someone cares enough to ask!  However, here's the catch:  I never really know day to day.   Emily is the hardest to tell.  She'll complain for a week about a cold sore, but she won't complain about the fact that she can't walk.  That was exactly the case in October 2010 when she was officially diagnosed with JDM.  She'll complain about a scrape, but not because her head hurts from having her sinuses scraped.  She tends to complain more when there is much less pain.  The worse she feels, the less she says.  When you ask her how she is feeling, the automatic response is "Good".  Sometimes we can pick up cues.  Other times we truly are left to guess.

Zach is more vocal right now.  He's much more quick to tell you when something is wrong.  BUT, the worst parts of the disease are what you can't see, so how can I really know for sure?

I have also had several people lately ask me if this could be because of environmental factors, diet, etc.  I will try to make this easy to understand, but it's difficult subject matter, and the scientists aren't 100% sure yet.  Say you have an electrical circuit that is working fine.  Everything is working as intended.  Suddenly, something happens- a trigger is pulled, a lever or switch.  That opens the circuit up, right?  Until that circuit is closed, it won't be right, it will cause problems.  The immune system is the same way.  Here's the problem- the "switch" in this case is invisible.  It leaves no trace.  And you may not  even know that the circuit is open for many years.  Some people have symptoms many, many years before the disease hits.  Once it hits however... Some people are lucky enough to be well managed with just one or two treatments.  Others never seem to be able to find anything that helps.  For a small percentage a significant diet change will help and heal them forever.  Most people find no relief through diet change.  And, if it's an environmental trigger, removing the trigger doesn't help.  We had mold in our wall that went undetected until 3 out of 5 of us got very sick.  We had NO clue that we had mold.  It was hiding up in the rafters of the attic above our kitchen and bathroom.  It was removed, and I know it's gone (because I am extremely sensitive to mold).  That doesn't seem to matter.  Other triggers are bacteria like strep.  Strep and pneumonia can set off autoimmune diseases like RA.  Again, once that trigger is pulled there is no going back.

When I tell people about my kids' situations they often ask me "Are you sure you don't have mold in the house?"  Yes, but even if we did it wouldn't change this either way at this point.  Oh, it may speed it up if we still had mold, but it won't magically reverse.

My kids "good" is different from other people's.  If I don't know how to answer you, please don't think it's anything more than just "I don't know".  As lame as it may sound,  we just don't know.  Some days bring severe fatigue.  Some days bring severe pain.  Other days bring stiffness, and still others bring all of the above.  For my kids, most of the time their pain is lessened.  Em does pretty darn well.  I think it's actually more because she has gotten used to the pain.  Also, remember that a simple cold can become a huge ordeal because their immune systems are suppressed.  This means that, while you & I can fight off a cold or have a simple round of antibiotics "cure" us, this often isn't the case with immune suppressed people.  They fight and fight but it doesn't always work without a LOT of intervention.  This is our life.  We make the best out of it.

ENT and Enbrel!

Ok, so just so everyone can see the crazy, up/down days that we have, I will post a breakdown of the day.  This is why we are so used to dealing with stress.

8 A.M.- The kids don't want to get up (and neither do I!) but we get up & ready to go.

9:30 A.M.- We leave and take Zachary to school.

10:20 A.M.- We arrive at the ENT.  We wait for about an hour, which is fine because we were so early.

11:20 A.M.- We get set up with the nurse.  Being a mom now accustomed to the things that doctors need I have a typewritten list of meds that Emily is currently on, a print out of all prescriptions taken since the start of the infection with the antibiotics highlighted in yellow, along with CT scans and the radiology reports.

11:30 A.M.-  The doc comes in with the scans.  He starts showing us how the sinuses should look and how Emily's are not performing where they should be.  The Ethmoid sinus looks good from a frontal view but not so much as you go farther back.  He throws out two ideas.  One is that we can do the culture that our pedi requested under anesthesia to find out which antibiotics will work best against this.  The second option is that we can do exactly the same thing, plus add on another ten minutes to scrape the junk out of the inner sinuses.  That is the best option to me.  If that stuff has been hanging out for God knows how long, it may not come out on its own, and then we'd have to get the scraping done anyway.

Noon-  We're talking to a nurse, in hopes of setting up the procedure, but with all of Emily's medicines and such, she doesn't want to do it without consulting our rheumy group.  They also want to hold off on prescribing a new antibiotic until they talk to our rheumy's, which leaves me a little nervous.

12:30 P.M.- A nice quiet lunch

1 P.M.- A quick visit to the park!  Not that she runs around, but it's nice to go be closer to nature.

2:30 P.M.- We head to my parents house for a visit.  During said visit my mom again discusses how more of her colon is blocked and she's afraid that they won't be able to do the 2nd colonoscopy.  Also, my father feels tired suddenly so he goes to take his blood pressure.  It turns out to be 80/37.  Ouch.  Mom gets him some potato chips to bring his pressure up and he's good.  I take some time to order a bunch of prescription refills.

4:30 P.M.- We head to the school to get Zachary.  He tells me how his throat has been hurting all day.  Once home I pull out my scope (don't hate) and look down his throat.  Bright red.  Great.

5 P.M.- While I really want to nap, I realize that I still need to call the pharmacy about Zach's Enbrel.  It had appeared in my history, then disappeared a day later.  It had also showed that our pay portion was $2100, so I was a lot panicked.  I had called a month ago to give them our Enbrel Support info, and I had emailed it as well.It turns out that they LOST that info.  I was absolutely thrilled to find out that his Enbrel will be FREE!!!  Best. News. Of. The. Day.  True story.

5:30 P.M.- I decide to see if my school's website could tell me why I haven't seen any more info about my financial aid.  I had electronically signed the paperwork, verified everything and returned it all.  I see NO SIGN of that.  I once had an amount that I was supposed to be allowed and now I see nothing indicating that I was ever approved.  Hmmm.  I make a mental note to call on Tuesday when my son vomits.  He hadn't told me that his stomach hurt, just like he didn't tell Daddy that his throat hurt.  Now I'm really in a panic.  Need to take yet another day off of work, make another doctor appointment.  I have Omnicef at home, but with him starting Enbrel and needing his Methotrexate on Friday, I really can't take chances.  So, I call in to work for tomorrow.

7 P.M.- I realize that I need to scan a bunch of documents relating to their healthcare and send it to the school.  I email both kids teacher's.

See the up & down pattern?  Welcome to a typical day in my life.  And I have it easy compared to the kids.  They still have to go to school, pretend that they are normal kids, do their normal work, then have their meds, their shots, the infusions and the constant doctor appointments and tests.  Thank you Lord for making children resiliant!!!

Arthritis is FINALLY getting some press!

For years now, many of our arthritis parents have felt that we needed a celebrity to speak out, to help us to champion the cause.  As Christine Schwab says in her new book "Take Me Home from the Oscars: Arthritis, Television, Fashion, and Me", arthritis has such a stigma associated with it; it is taboo in Hollywood.  People are so into their stereotyping of the disease that they try not to look at it... what little they see of it is with blinders on.  Because it is associated with aging and the elderly and Hollywood is all about being young and perfect, no one wants to acknowledge it.  This has robbed us of  money that a celebrity could raise for research.  A cure will never be found if no one is researching.

As a parent, dealing with the stigma is very hard.  You have people that don't believe you when you say that your child has arthritis.  You have people that assume that you must be doing something wrong as parents.  People look at a child on steroids... and judge that child and the parents.  It is a heartbreaking cycle.  This is why I choose to speak out.  After a year on steroids, my daughter is still so embarrassed that she doesn't want her pictures taken, she doesn't want to be on stage or in a position where people will be looking at her.  For a ten year old, what she has been going through is very, very tough.  She handles her life with a positive attitude, confidence in herself, and a deeper wisdom that a hard life teaches you.  There is something about these sick kids...

Anyway, back to my point.  Christine Schwab was asked to appear on an episode of "The Doctors" show!  She spoke about Rheumatoid Arthritis and the stigma associated with it.  You can watch her episode here.  We are so excited by what Christine is doing!  Fighting this battle for 20 years herself, she fully understands what we are going through.  She is becoming quite the advocate for our children, and we are so thrilled.  This truly is an exciting time to have RA or any form of arthritis.  There are so many people striving to gain awareness, like Kelly the RA Warrior, &  Rheumatoid Arthritis Guy.  There are new drugs that are being looked at; there have been so many amazing drugs that have been approved that are making some serious differences.  My favorite always has and likely always will be Enbrel.  No, it doesn't work for everyone, but it was a miracle for Emily.  While we continue to wait for the green light from insurance to use it for my son, we pray that it will be a miracle for Zachary as well. 

They still have no idea how autoimmune arthritis happens.  There seem to be different triggers for everyone.  Some people have severe food allergies or sensitivities.  (For those people, drastically changing diet seems to work well.)  For some people, serious infections like strep seem to do it.  There are environmental triggers.  They believe that it's like flipping a switch; once the trigger is released, the arthritis starts.

Some people have done very well by drastically changing their diet.  Most don't.  Some people benefit from glucosamine. Some people swear by long-term antibiotic use.  Most people find their relief instead from drugs like Enbrel, Humira, Remicade, Rituxan, Actemra, and Symponi.  These drugs are incredibly expensive, but they work.  For most.    But this isn't enough.  We need more answers.  We need a CURE.

October is hospital month for us...

While the little miss is busy painting, I have taken over her internet!


So, she still doesn't really have a good grasp on when it's important to speak up when it comes to her body.  She's gotten much, much better, mind you.  However, now she's gone to the opposite extreme of telling us about a tiny pain that is there and gone in the blink of an eye, but she doesn't really express when that little pain turns into something bigger.  We knew that her chest was a little uncomfortable from her port placement, but we didn't realize that there was more to it until Wednesday.  Apparently, she didn't feel like telling her daddy on Tuesday.  She told me on Wednesday, so I called the surgeon and her pedi.  We made an appointment for Thursday since her pedi is only open for 3 hours on Wednesday's.

Our pedi appointment went well.  The nurse at the surgeon's office had told me that they would likely want to access and flush the port, take labs and xrays.  Our pedi said that she wanted to be really aggressive.  She prescribed Augmentin as an antibiotic and a strong antibiotic cream.  She also requested that we take a cup of water and two tablespoons of bleach (yes- Clorox!) to wash the area with to kill the bacteria.  So we did.

The next day her chest hurt still, but it was in a different area.  She waited until I got home from work to tell me this, after a full day of school.  (GRRRRR!)  So, knowing that this would mean a trip to the ER, I called her pedi.  We agreed that it would, indeed, be the right decision to take her to the ER.  I had planned on using the one by my work because they did have a pediatric floor, but our doc suggested we make the drive to an actual children's hospital.  So off we went.

We spent the majority of Friday evening in the ER.  They sent us home around 5:30 A.M. after taking cultures, finding out that her blood work was normal, and after a round of IV antibiotics.  We got home and crashed hard!  The night had been long and frustrating.  The worst of it was when they had to access the port for the first time.  We were prepared for her to have a hard time emotionally, but since the area around the port was infected, it was harder.

At home she slept in until 3 P.M.!!!  Obviously, she was quite tired and worn out from the night in the ER.  After she woke up my phone rang.  It was the hospital calling to say that they found "Gram Positive Cocci" growing in her culture.  After a quick Google search I found that it's a class of bacteria that includes staph and strep.  Not very surprising.  It also turned out that the antibiotic they had given her in the ER was more for meningitis and not meant for staph or strep, so they wanted us to come back to the ER.

Once we got here we realized that no one really knew what to do with us!  Someone had dropped the ball and forgotten to write notes.  We were told downstairs that they weren't 100% sure we were staying.  I knew.  You can call it crazy, psychic, coincidence or whatever else you like, but I know things, and I knew that we would be staying.  Just like I knew that we would be the ones to develop a crisis like this.  That's how we roll.

We talked to the doctor for a few minutes before he decided to keep her.  Naturally, part of his reasoning is because of her being immune suppressed.  In a child with no other issues they would probably have sent them packing, but that could be a mistake with dire consequences in an immune suppressed child.  So, they got us a room upstairs.  Because nothing is ever normal for us, they told us the wrong room number.  The transport lady, a worker from Child Life, Emily & I all went to the right room on the wrong floor.  It even said "Hi, Emily!" on her TV screen.  There was no bed in the room and no name on the door.  They finally found out where we were supposed to go!  Up to the 8th floor, in a room with an amazing view of the city and the bay!

So far, we're pretty much just chillin'.  The worst part of her stay so far has been accessing the port for the second time (still with an infection lingering) and drawing blood out of her arm.  She was so, so upset about that, but their reasoning was very logical.  They needed to gather more blood for more cultures from the port to see if it was a fluke, but they also needed to get a peripheral to see if the bacteria had spread to the rest of her body.  Makes sense, right?

The cultures take 24-48 hours to come back, but apparently on a weekend there isn't really much of an interest when it's not a huge rush.  That's fine.  Aside from missing Daddy & her siblings, it truly hasn't been a bad stay.  Hey, there's TV, movies, internet, room service, a great view, and quiet (yeah- in the hospital!)  We've been told not to expect the quiet to last until tomorrow.  For now it's been nice.  They say that tomorrow there will be a ton of residents all wandering around the floor, med students, and other staff.

So we pretty much just have to wait for the cultures to come back and stay on antibiotics.  (Just her, not me!)  They said that once they find out what type of bacteria had grown on the first culture they'll have a better idea of exactly which antibiotic to use.  Hopefully after finding that out we'll be able to go home!  I know that this is the best place for her to be. She knows that, too.  She told me this morning that this must be a good idea because her pain went from being between a 6-7 to a 1 on the scale from 1-10.  Thank God this time she's used to hospital life.  Last October when we stayed at Shands, it was truly hell.  Neither of us could wait to go home, we were so far away from home, and she was so scared.  At least this time she is familiar with the routine, and the port makes her even more brave than we already know she is.

Oh!  And one last note:  The Child Life worker that escorted us up here is awesome!  She came back to help them access her port yesterday, then back again to draw the peripherals.  She promised to visit today, and she did!  Not only did she come visit, but she left Em to nap and came back with a Taylor Swift Barbie doll!  She also brought some Halloween stuff for her to paint, so she's had a busy night.  Everyone here has been fantastic (minus one phlebotomist), but this lady has just been amazing.  Hopefully tomorrow there will be more to do.  Nothing is open on the weekends, but tomorrow the gift shop & library will be open.  I can't wait to get her out a little bit!  Hopefully we'll be back out tomorrow.  We have an early appointment at Shands on Wednesday for her meds, a GI appointment for her in the afternoon and a new patient appointment for my son with our rheumy.  Wish us luck!  And prayers would be wonderful for a quick recovery and all of the bacteria to be GONE.  Thank you all!  With love from ACH <3

Sharing Em's Raynaud's story

About a year ago I discovered The Raynaud's Association.  I was desperate for personal stories that would help me to figure out how to help Emily.  At this point, the Raynaud's was the worst.  Her arthritis was held in check with Enbrel, and it was before the Dermatomyositis kicked in.  This was the time for her Raynaud's to really make a spectacle of itself.  At this point, she couldn't go to a pool- even a heated pool- without turning purple and being in much more pain that before.  She couldn't wear dresses or skirts.  She had to keep mittens with her, and heating pads, constantly.  This was a truly difficult time, trying to figure out how to prevent her from getting frostbite at school again and other such things.

I had started to really get into blogging at this point.  I wanted to write to them after seeing that they were looking for creative ideas on how to cope with the condition.  I was also hoping that we could help some with my husband's rice sock idea.  And that some people would understand because they had been in our position, and would perhaps reach out and tell us how they coped.  Well, much has changed since then.  Raynaud's has been on the back burner since our new rheumy gave us Procardia.  I had begged our old rheumy for a calcium channel blocker but he didn't think a little frostbite could hurt, I guess.  He said it wasn't necessary.  Well, 2 nurse practitioners and 2 other rheumy's think he was wrong!  They have her Raynaud's written up as "Significant"... and they didn't even see a flare, though I did show them cell phone pics.  They said they didn't need the pics because they could see it in her hands from a mile away.

Anyway, the whole point to this?  My story turned up in the Raynaud's Association's newsletter!  I actually got the link last month, but we were so busy then getting ready for our Make A Wish trip that I forgot about it.  I got a Twitter text tonight with the link for the current edition, & I actually remembered to go back. 

Also, I found out that a chiropractor 2 minutes away sells BioFreeze.  We truly love that stuff, so I went over to go buy some for our elbows & pulled muscles, etc.  Being a Sunday, the doc was in but had no staff.  We got talking quite a bit about nutrition, inflammation triggers, other autoimmunes such as Celiac's disease, and gluten sensitivities.  I haven't had a chance to check these out yet, but he told me to look up PubMed, where posted articles are peer reviewed, and also Deflame, Your resource for reducing inflammation and pain with diet and nutritional supplementation.  Again, I haven't had a chance to check either page out except to grab the links, but I accept the possibility that they could hold great value.  :)  It's certainly worth looking into the Deflame diet.  I could use some inflammation control myself for my Rosacea.  It sure couldn't hurt!

Not at all as I expected

One thing that I have learned in our journey so far is to take one day at a time.  I try not to have so many expectations, because you really just can't predict autoimmune diseases.  Usually, just as I think I have things figured out, I get knocked down a peg or two. 

I was really looking forward to Emily's infusion this month.  I knew that she really felt that she needed it since her wrist & elbow were still bothering her, but I also had a long list of questions.  Usually, kids with Dermatomyositis are seen every 4-6 weeks.  It's a rough disease, very hard to get under control and can suddenly swing in the opposite direction quickly.  We weren't seen last month, so I though for sure she would see a doctor this time.  I knew that they had changed the way they schedule patients, but I hadn't realized that they were scheduling the kids for IV's and not telling them that the docs weren't in.  I made sure that they will be in the next time we are there.  I wanted to talk about her flaring arthritis, her inability to eat more than 2 bites again now that she's on lower prednisone, and I wanted to see about repeating the pulminary function tests since Em totally didn't even try last time.  It was the day she was being released from the hospital and she just didn't want to be bothered.  Now she's been sick more in the past 4 months than she has been ever since being on the immune suppressors.  Maybe it's the Prednisone.  I don't think so since they increase her doses when she's sick.  I really wanted to talk about all of that, and a patch on her head that may be psoriasis.

Em did very, very well with her treatments.  It was lovely to walk in to friends saying hello  :)  Emily went off with her favorite nurse to have her needle... BY HERSELF!!!  I was shocked!  This was the very first time that she didn't cry, whimper, or even need me at all.  I was so proud!  And all the while she was talking his ear off.  Unbelievable.  The rest of the infusion went without anything noteworthy... until we were leaving.

I had asked the nurse's for a copy of her labs.  I knew that the doctor's office would do that, but I didn't know the infusion room nurse's would.  The copies they gave me showed that day as well as results from the month of May.  They didn't show high/low, so I had to take them home to compare them with my copies from the doctor's office.  Those copies do show ranges.  We had gotten her muscle enzymes down.  Last month they shot up quite a bit.  This month they are only 2 points away from being in the high range.  I had been watching how pink her knees had been getting, but she didn't seem to feel a problem so I didn't worry about it.  At least it's summer break, but she shouldn't have to go through this.  I know our docs are doing everything within their power.  I know this is a crazy hard disease to get under control.  I just thought that maybe something would be easy.  Just this once.  So, I'm keeping a sharp eye out and trying to figure out what to do.  I'm sure the answer will seem clear in a day or two.  Frustrating.

Well, we have Cub Scout day camp in the morning and it is way late.  Have a good night!

Our amazing trip!

We had a truly magical week at Give Kids the World and the theme parks around it.  On Sunday we arrived at the village, had lunch, checked in, then Kevin & the kids unpacked while I went to orientation.  After I got back to the villa, we went to the pool.  Before taking Procardia for her Raynaud's, Emily couldn't go in a pool that had a temp lower than bath water.  I'm happy to say that we stayed at that pool for about 2 hours.  And I think I broke my "bee curse".  Yes, I know it sounds silly.  I have always been a target for bees. For whatever reason, for the past few months, everywhere I go I find dead bees.  Whether inside or outside, there have been dead bees everywhere.  Well, I found a bee struggling in the pool.  Despite always being a target, I grabbed a stick, pulled it out of the pool, and stuck it on a table in the sun to dry.  I'm happy to say that I haven't seen a dead bee since.  After we left the pool the kids went on the carousel.  They had several turns before we went to go make their dream pillows & start the process for Emily's star.

On day 2 we met Rapunzel!  I hadn't realized that it would take ONE HOUR to get from the parking lot to the inside of the Magic Kingdom.  Thankfully I brought the paper with the info on where to go (the First Aid station)  with us.  There was a phone number to call in case we ran into any problems.  I let them know our situation assuming they would tell us that the deal was off.  Rapunzel was waiting for us when we got there.  She was amazing!!!  She stayed in character the whole time.  She engaged all of my kids in conversation.  Gir showed off some of her drawings, but mostly she & Emily chatted away.  Em was sooo happy.  She was still glowing when we went on our first ride.  I'm still not sure what happened but somehow while getting off of the ride she hurt her elbow.  Back to First Aid we went.  After some time with an ice pack she was ready to go back out.  About an hour or so later we went on the Peter Pan ride.  While she was getting into the car they stopped the moving platform.  That made her lose her balance and she once again hurt the elbow.  Back we went to First Aid!  This time we got an Ace bandage to go with her ice pack.  She wasn't really sure if it was really from an injury or her arthritis.  I believe it's a combo.  Either way, she said today that it's finally starting to feel better.  The rest of the day was less eventful.  We stayed for the Electric Light Parade & the fireworks around Cinderella's castle.  It was a magical day! 

Day 3 brought us to Universal Studios Island's of Adventure.  It had been Gir's dream to visit the Harry Potter area.  After sleeping in to recover from the day before, we got her there ok.  The crowds were unbelievable.  People were everywhere!  To get back through a store I went outside & around.  I cannot deal with too many people, especially in shopping situations.  I'm fine with being closed in like with MRI, but not when I'm surrounded by people.  I had to get out of there.  One would think that in an area devoted to kids and adventure, there would be things for the younger set to do.  Nope.  There really wasn't much for my little guys to do there, so we split up.  I took the little peeps to Dr. Suess land & Toon Town while Kevin & Gir hung in Potter Land.  From that point on the kids pretty much enjoyed the rest of the day.  Emily told me the next day that when we were on one of the water rides, she felt like she couldn't breathe.  I wondered.  She had a weird look on her face.  She seemed more fragile the whole week. I also think that may have been the day that she hit her head on a ride.  That hurt her all week.  She really enjoyed the Spider Man ride here.  And Zach got to be "Special Conductor of the Day" on a ride in Suessville.  After we left we had to go in search of a battery charger for the camera.  My batteries died after about 7 pics in Universal.  We had attempted to charge it the night before but apparently the USB to DC converter for the iPhone isn't compatible like you'd think.  I also picked up a new battery but only just in case my battery didn't charge.

Day 4 was Sea World.  After the hustle & bustle of Harry Potter land we needed a day of down time.  We figured that Sea World would provide the perfect opportunity.  I guess the dolphins just don't hold as big a draw as Harry Potter.  The park was far from a ghost town, but it wasn't crowded either.  Perfect!  Kevin was really getting tired of crowds of people cutting him off while pushing the chair, running into him, running their kids into him, or jumping over the chair while moving.  (Seriously.)  Sea World was our first day that we felt able to relax.  It was a wonderful day just looking at the sea life, watching shows, and feeding the animals.  My favorite moments of the week were spent here, watching 2 of the kids feed the dolphins.  My son was off pouting in a corner because he wanted to go ride rides instead of feed the dolphins, but my girls had a blast.  There was such joy on their faces.  And who doesn't love dolphins?  I was really excited.  I love the stingrays, too.  Em's more scared of them, but Gir & I love them.  I am NOT a photographer, but I lucked into this shot: 

Isn't he cute???  We didn't get to go on the Manta like I really wanted to, but we did catch one dolphin show & the new Shamu show, "One Ocean".  We left feeling recharged and happy.

Day 5 we decided on Animal Kingdom.  As with Sea World, I really felt happy here.  It's amazing how many people rush around trying to see things but completely overlook the obvious.  AK is such an amazingly beautiful place, created out of love.  There were so many things that I was totally drawn to.  While I could happily work at Sea World, I could totally live at AK.  The girl always enjoy animals, so they loved it.  It was so cool just looking around, wondering what you would find next.  I took tons of pics here because I really fell so in love with it.  This was another magical day, but I did miss my dinosaurs.  I was heartbroken about that.  :(  I have always had a love for dinosaurs and the mysteries surrounding them.  I knew that my son would appreciate it, and Gir thinks they're cool.  I really wanted to take my kids to see the dinosaurs, and we totally missed it.  I think I moped the rest of the day.  I knew how stupid that sounds, but I couldn't get past it. 

That night was Christmas at the village.  We made it just in time.  They actually do pictures with Santa for the kids, a celebration with cotton candy and snow, and they give every child a toy.  We are so in awe of that village.  It's amazing!

Day 6 was our Hollywood Studios day.  We slept in again.  The kids had a hard time keeping up with me  :)  We are just not morning people.  We were told that the Star Wars parade started at 1 PM so we planned to get there in time for that.  Nope.  It started at noon.  Getting there at 1 we missed it.  But that was ok.  We caught up with several characters and got pics and autographs.  One of the many Disney employees that we met told us how to make the most out of our day.  It was unbelievable how many volunteer at the village.  They say that Disney encourages them to volunteer there.  I thought that was sooo cool!  Anyway, we did the Star Tours ride twice.  The kids loved that.  We did the Toy Story ride.  Emily really loved that!  She was so excited!  It was really cool to see her so happy.  I tried to get good pics, but of course it's always like a day late, dollar short.  Gir tried out for American Idol (Disney version).  While she was amazing, since she sang Evanescence she was told she wasn't "bubble gummy enough".  She expected that, she really just wanted the critique.  The judge was impressed with her voice so she was happy.  I auditioned, too.  I can't believe how nervous I was.  It's been many years since I was active in the entertainment industry.  I can't remember what play I was in last but I think my last talent show was 1992.  I think the last time I sang karaoke in front of a crowd was when Gir was about 5.  I didn't plan on singing so I didn't have anything picked out or rehearsed.  I did ok enough in spite of that.  She could tell that I had a good voice, but I was trembly and forgot my words since I didn't really plan on singing.  I would have psyched myself up had I known...  We watched the Muppet Show  <3, rode the Tower of Terror, and the Aerosmith's Rockin' Roller Coaster (my new favorite ride!!!)  My little boy went on it- his first loop coaster.  I think we got him hooked!  Emily... not so much.  She had nightmares about the Tower of Terror.  She didn't go on the roller coaster.  I think it may have killed her.  As we were leaving they were rounding people into the "Fantasm" show.  Even though we really needed to get back & pack, we went to the show anyway.  We all really enjoyed that.  It was pretty amazing!

On our last day we had choices.  To check out and hang at the village all day, go to our last day at Universal or just go home.  Everyone voted for going home.  I believe they were all homesick, but I also think to a degree they didn't want to leave so they wanted to just hurry up and do it.  Get it over with.  Not to mention Emily was stuffed up.  I was truly afraid that she was getting sick. 

She went to our pedi today.  She said there's a lot of viral stuff going around, but just in case she put her on Omnicef.  Omnicef is a strong antibiotic that they generally only use when everything else has failed.  Em has been sick more than well the past few months so she figured this may clear up any residual drainage or infection.  With the chance of pulminary hypertension always hanging over our heads, I worry.  Especially now since she has been sick more often than not lately.  The other thing that disturbs me now is that she's back to barely being able to eat anything now that she's on a lower dose of Prednisone.  (6mgs is still high, but it certainly beats the 42mgs she started out on).   Before I had always thought that she just needed Prilosec or Prevacid.  Well, she's on Prilosec.  She's been on Prilosec since October.  I have a TON of questions that I wanted to ask the docs tomorrow when we go for her IV meds, but I found out today that the docs aren't in at all tomorrow.  Since she wasn't seen last month, and most JM kids are seen every 4-6 weeks, I'm feeling a bit anxious about this.  I wanted an opinion on the GI issues, I wanted to have her PFT (Pulminary Function Test) repeated since she really didn't want to be bothered the last time.  It was her last day of her hospital stay and she really just wanted to leave.  I also wanted to see if we could increase her Remicade and decrease her steroids.    I'm not very patient.  We shall see what happens tomorrow.  I'm assuming that the ARNP's won't be there either, but one can hope, right?  I'll post tomorrow or the next day how it goes. 

We're back!

The week was crazy, wonderful, exhausting, exhilarating, beautiful.  We got back home on Saturday, earlier than expected, but we were all so tired.  Though it had its rough spots, for the best part the week really was a wish come true for Emily.

I've been too preoccupied to post.  I'm still trying to sort things out in my head.  So much ran through it this week!  So much happened.  So many memories made.  Give Kids the World Village was a wonderful, beautiful and amazing place that I'm having trouble putting into words.  Before I formulate all of that, let me say tonight that I am very grateful to Boston Market, Perkins restaurants, Breyers ice cream, Hasbro toys, Walt Disney World, Universal Studios, Sea World, and the many, many volunteers that help to make up this amazing community.

The story of Give Kids the World can be found here.  I was first told this story while in the pool with other families.  We were enjoying watching all of the different children, some in PVC crafted wheelchairs especially for the water.  It was amazing how many different families were there, yet there was a feeling of kinship and understanding here.  The volunteers come from all different walks of life.  Some are high school students doing their community service projects.  Some are college kids earning credit.  Some are retired folks, occasionally coming from different states to spend their vacations helping these families.  And many are employees of the theme parks.  We had figured that the theme parks may feel we were a burden- getting free tickets should be enough, right?  No, they totally understand that they are giving some children the hope to beat their diseases.  Some children will cherish these memories as they fight long, life-long battles.  And others don't have time for any other wishes.  They know the tolls that having sick children can take on a family- mentally, physically, financially.  These theme park employees would sometimes come up to us and ask us how we were doing, how we were enjoying our stay, and all mentioned how they loved the time that they volunteered there.  Many are still active volunteers.  Others can't fit it in right now but look back fondly.  I cannot begin to express to you how amazing a community this place is.  And they think of everything!

On our first day we walked in to find a toy in our villa.  (They left toys daily for the kids.)  The villa was larger than our house.  The kids bathroom had a jacuzzi and a huge handicap shower. We were given coupons to take to the Star Tower to make "dream pillows" for the kids, and also to place Emily's star.  Since some of these little people lose their fights, they decided to give them a star to place up on the ceiling that would stay forever.  This would always keep a part of them in the village.  I believe they said there are 150,000 stars up in the main area, and they expect the new star tower (only opened 3 weeks ago now) to be full in 6-9 years.  A star for every sick child that will be placed, and with the guidance of a star fairy, always found by the child or their family if the child passes away.  What a beautiful concept!  They want your child's week to be "a week of yes's".  



Though she felt fragile this week, camera shy still due to the steroid weight, and flaring a bit, Emily still managed to have a wonderful week of dreams come true.  We laughed, we made new memories, we had fun, we enjoyed the rides but also the nature around us, the animals, and feeding the animals!  My favorite moment?  Watching my girls feeding the dolphins.  My son was busy pouting because he wanted to go ride a roller coaster, but my girls enjoyed the experience for what it was- an amazing experience and momentary connection with a dolphin.   I wanted to purchase the actual Sea World photos, but with the crowds of people trapping us then moving us along, combined with the drama that my son created, we somehow forgot to go look at them.  This is my consolation prize  :) 

I shall give a real update soon with actual details of the trip.  Let me say now that Gir seriously almost killed herself before we even got into our villa.  She tripped on a bag while trying to exit the van.  I saw her feet in the air flying as she went out the door.  She scared the heck out of me!!!  I was terrified, but she was somehow totally ok.  She was bruised up all over, and she bit her lip but otherwise she was fine.  She was very, very lucky.  I was worried that may set the tone for the week, but it was surprisingly calm and peaceful.  More to come soon  :)

Thank you, April. Much needed!

April has probably been one of the best months we have had in quite some time.  April has been filled with good news, and happiness over things to come  :)

April was kicked off by our camping trip with our Cub Scout family.  I had really been looking forward to this weekend as a little vacation.  I was hoping that Emily would be ready to run around with her friends, but she actually wanted to be with me for 98% of our time there.  The first night I think we kept everyone awake :)  She has some, ummm, flatulence issues.  Honestly, my little princess can let 'em loose better than any guy I know.  Our first night in the tent she had gas so badly that she woke up her brother, and across the campsite her farts were heard.  Kevin got a text saying "Gas gas gas :)"  and we all about died laughing!  This was around 4 A.M.  We had a few people come over to the tent to see what all of the commotion was about.  We were hysterical!!!  What a great day that was.  I love being out in the woods, and being there surrounded by family (including extended!) was really cool.  We took a nice hike the next day.  I wish I didn't have to push the wheelchair, that Emily wouldn't need the chair, but I'm so happy that she was able to come because of it.  We saw some beautiful plant life along the way, & even stopped to grab some wild blackberries!  That weekend was just what I needed to feel back in tune with reality.

Though it's not a huge, noticeable difference yet, Emily is definitely losing some of the steroid weight.  She is so excited about that!  She keeps telling me about different things that she can do, like button her pants more easily.  I see a huge change in her attitude this month, likely due to the last steroid decrease.  She has more energy, she wants to do more, she has some goals set.  Because of this she is happier, doing things like walking more and playing Wii Sports again, and finally she is back to loving her brother like a friend!  That has been the hardest part of all of this.  She & her boy were always so close; suddenly she was cranky towards him more often than not, yelling at him and just being mean to him.  I'm so glad they are playing together again.  As Kevin said recently, harmony has been restored.  It's the little things that we've missed, like that.  She actually wants things again!  I never thought that would make me happy!  Yes, truly April has been a turning point.

She's doing well in school, too!  She had the 2nd best grade in her class on her Time test.  That is exciting partially because she missed that chapter & she worked extra hard to catch up!  For a while she didn't care at all about her school work, or anything else.  She's really determined right now, & I'm so thrilled to watch it happen.  We had a fantastic IEP meeting in school for her.  They are increasing her time with the school Physical Therapist, trying to pull her out during PE since she has such big limitations in there.  She can do low impact things like walking, but nothing that could potentially cause injury as the steroids can cause brittle bones.  Her teachers are very proud of how far she has come this year not only with her school work, but also with her attitude.  She used to have "math breakdown", but she seems to have moved past that.  We are very, very blessed that our school is as caring as they are.  Before placing her in this class they really stopped to think & talk about where the best place for her would be.  They were absolutely right to place her in this class.  She isn't just taught; she is cared for.  Obviously, any parent would want their kids cared for in school, but when it's a child that has dealt with so much, that really needed to be nurtured and loved, it is much more appreciated.  I love these teachers in a way that I don't think they could understand.  You just couldn't know how much their love for her has meant to me, or to her.  They have impacted her life in a huge way.  Truly that is God watching out for us, trying to make some things easier.  They have been a gift.

Our Make A Wish volunteers called just the other day to say that we have been approved for our Disney Make A Wish trip!  We are all so excited!  All that I need to be happy is to watch the kids be happy; that makes this a dream come true for me.  I was so happy that as soon as I hung up with our volunteer, I burst into tears.  The kids kept asking me what was wrong :)  I was just so happy.  There have been so many things that Gir has wanted to do, but we haven't been able to accomodate her because of time or money.  There are many things that this trip will address for her.  And it will be wonderful for my dear, sweet little man.  He's such a good boy, so tolerant & sensitive.  He needs something really good.  My mom told me the other night that he was telling her how things were going so well that he was worried about what was going to go wrong next.  That's how things roll around here.  I swear, it's always things that we could never have controlled in a million years.  But hey, life is never boring!

More good news is that Kevin went for his yearly physical to find that everything looks good!  His labs are where they should be, too.  He is getting better slowly but surely.  We go on our trip at the end of  May.  My hope is that by then Kevin & Emily will feel so much more like themselves.  I want them to both feel good & have a great time.  This trip needs to be magic, especially for Em, but for Kevin & the kids, too.  I am so excited that I could burst!  May is also our arthritis walk, too  :)  We look forward to that every year.  It's so nice to be with people that understand you, even if you don't know them.  I'm sure that I'm forgetting to mention a bunch of things, but I've covered the big stuff now.

I found a blog post that really hit me.  It made me stop and think about how Emily must feel.  Here is the "Arthritis Angels: A Walk In Someone Else's Shoes" post. 

Hey, it's spring!  Don't forget to look around at some of the beautiful flowers, including weeds, that have popped up  :)  I truly believe that these are gifts to us, meant to put things into perspective.  Will you stop to smell the roses today?  You really should....  

International Autoimmune Arthritis Movement Awareness!

Please feel free to share this info!  These facts came from IAMM's Facebook Page.  You may also visit their main site here.

Can a baby have degenerative, wear and tear arthritis in his/her joints?  Of course they cannot.  The commonly used term “arthritis” refers to Osteoarthritis, a condition where cartilage around the joints becomes thin due to wear and tear, age, or injury.  A baby has not lived long enough to endure this kind of damage.  A child’s form of ‘arthritis’, therefore, is of an autoimmune nature.  Autoimmune Arthritis is an autoimmune disease which causes the body to attack the healthy tissues of the joints, connective tissues and surrounding areas (including organs). 

So before you say, “that person/child/baby is too young to have arthritis”, realize it may be a different strand of arthritis that is not caused by aging.  See Stacey's amazing awareness video here.

Osteoarthritis, a degenerative arthritis often referred to as simply “arthritis”, is caused by age,  wear-and-tear, or injury.  Autoimmune Arthritis (Rheumatoid Arthritis, Psoriatic Arthritis, Lupus, Scleroderma, Ankylosing Spondylitis, Still’s Disease, Juvenile Arthritis) is caused by the immune system mistakenly attacking its own cells, causing inflammation in connective tissue, joints, and organs.  Autoimmune Arthritis is NOT caused by degeneration, age, weight, or malnutrition.

“Arthritis”, defined, means joint pain.  The term “arthritis” refers to Osteoarthritis, a degenerative, localized joint condition caused by wear and tear, age, or injury.  Symptoms of “arthritis” include joint pain and some inflammation, but rarely swelling.   It is localized to the weight bearing joint that has begun wearing down.

Autoimmune Arthritis (Rheumatoid Arthritis, Psoriatic Arthritis, Lupus, Scleroderma, Ankylosing Spondylitis, Still’s Disease, Juvenile Arthritis), is a systemic autoimmune disease.  Symptoms of Autoimmune Arthritis also include joint pain but there is massive inflammation which often causes swelling.  Systemic arthritis, unlike degenerative arthritis, is not localized; it can affect any part of the body at any time, even at rest.  It is often accompanied by low-grade fevers, rashes, flu-like symptoms and debilitating fatigue.

Do you know that over-the-counter pain relievers, such as ibuprofen or heating creams, used often to treat the symptoms of degenerative arthritis (Osteoarthritis, often referred to as “arthritis”) are not the same medications prescribed to treat Autoimmune Arthritis (Rheumatoid Arthritis, Psoriatic Arthritis, Lupus, Scleroderma, Ankylosing Spondylitis, Still’s Disease, Juvenile Arthritis).  Autoimmune Arthritis medications include anti-inflammatory, disease modifying drugs, including low-dose chemotherapy treatments. 

Total average cost to purchase a month supply of ibuprofen and other topical ointments:  $18.

Total average cost to purchase Autoimmune Arthritis medications:  $2,500* (*number may decline based on insurance coverage).

Osteoarthritis, commonly referred to simply as “arthritis”, is caused by degeneration.  This wear and tear arthritis (unless caused by injury) affects weight bearing joints and can take years to cause damage.   Once the cartilage begins wearing away from the joints, it is referred to as “arthritis”.  Pain begins once damage occurs.

Autoimmune Arthritis, an autoimmune disease, is caused by a problem within the body’s immune system.  This type of arthritis affects any area in the body that contains joints or connective tissues (including organs).  Pain often begins in the form of an unexplained injury, for it mimics that of a sprain.  However, outside of the pain, it is often paired with an unexplained fever, flu-like symptoms and massive fatigue.  Because blood work may return normal for several months or years, diagnosis becomes difficult until the damage can be seen on an x-ray or MRI.  The pain begins often years before damage occurs.

Very good appointment!

I apologize for not updating sooner.  My little bout with a sinus infection has become a battle.  I have been feeling kind of like I was hit by a truck.  Since I ache too much to sleep, I shall write  :)

This past month has been a turning point for Emily, so I knew that this appointment would be good.  Before as the steroids were so high and their effects hit her so hard, she had a rough time adjusting.  I can't imagine how she was able to deal with the dosage that she started out with- physically or emotionally.  Back in October she was started on 42mgs.  She had 21mgs in the morning and the other 21 at night.  With this appointment we continued on the taper that we started months ago.  They dropped down to 6mgs this month!  I had expected it would drop to that.  Last month when they had us take her to 12mgs for 2 weeks & then 9mgs for three weeks, they told us they would likely drop her down to 6mgs this month.  They also told us that this is generally around the time that you start to see the steroid weight drop off.  That is huge because it is so uncomfortable.  It is as hard for her to bend over as it is a pregnant lady, and her center of balance is off.  She still has a long way to go but she knew that it was drop off because she can fully open her jaw now!  That was yet another thing that had made her sad, & she has been waiting for the day where she could finally open her mouth again.  Last visit they said that her muscle enzymes were better than they had seen them, and normal for the first time.  This time they were even lower!  That's huge.

They did decide to increase her Remicade for next time for her joints.  Her back has been bothering her enough so that she wanted to get her infusion.  I still expected the usual fear that grips her the day before, that causes a huge crying jag that night and has her silent and terrified the whole way over.  Usually she barely speaks on the way.  This time she was in a really good mood, really ready to go.  She watched "Tangled" on the ride and was even singing along to the songs!  I haven't really heard her sing since September.  I think she knows that right now it's all downhill, so to speak.  I try to hard to keep her educated and in the loop.  She understands that this is what I've been telling her would happen.  She told me the other day that she's really glad that we switched to Shands.  I'm thrilled that she's happy there now, even if she does have a way of yelling at Dr. E every time we see her.  I'm not sure why.  I think that she resents her still from keeping her in the hospital, even though she knows it was for the best.  I'm just happy that I can finally really say that she's doing very well.  She does still have a long way to go, but she's not flaring right now.  I love how she went from never telling anyone that she was hurting to telling me every little ache and pain.  Sometimes it's silly things, but I'll take the silly if she's willing to talk about it.  She's acting more like herself, talking to her brother like he's her best friend again, really trying to tackle school with a new enthusiasm, & she's really excited about Make A Wish.  I am so, so glad that we have that so she has something amazing to look forward to.  I truly believe that has a LOT to do with how happy she's been lately.  At her lowest points it gave her something happy to think about.  What a huge, huge blessing that is.  I know that we have a long, possibly difficult road ahead with her disease.  It could stay like it is, it could turn into full blown Scleroderma or Lupus.  Or it's possible it could go into remission.  We have to keep a vigilant eye out for signs of pulminary hypertension & other systemic signs, but right this minute she's the best she's been in a while.

There are many other children out there with arthritis that are not doing so well.  Little GS has so many struggles with his vision.  They actually had to put a drain in his eye.  His family has been fighting for his vision for years.  DSW has had more pain from arthritis that they can't control that she uses her wheelchair now way more than she should have to, but they are stumped.   PL has been trying to be pain-free for three years now, & they still don't know how to help him yet.  H&J are still looking for the meds that will help them, too.  These are just the kids in our state.  There are too many kids suffering silently.  These brave little heroes need a cure.

Where does the time go?

The past two or three weeks have just blown by.  There are so many things that I have been wanting to write about, but I just haven't had time.  Here I sit with my face feeling all sinus-pressurey, knowing that I won't be able to go to sleep, so now seems like a good time :)

We've had our usual ups & downs.  I decided that we desperately needed something fun to do, so we took a Sunday & Monday over the kids spring break to go to the Rennaissance Festival and Busch Gardens.  The kids had a blast, & I did, too.  It was harder for Kevin.  He's still trying to get back to himself, but he trooped along trying to make the best of it.  My son was so excited for BG!  We used to always have yearly passes, but we hadn't gone in a couple of years.  It's amazing how much has changed, and how big my little people have gotten.  They were interested in a whole different way now.  It was a truly wonderful couple of days.  It was eye opening in some ways.  There were several kids around her age that just stared at her like she was an alien.  Some parents, too.  We tried to shift the focus off of her, but I think they are drawn in by her chair.  I don't think that she noticed, & we weren't going to point it out.  Then, on her first day back to school she came home angry.  Two little kids were pointing and laughing at her.  My sweet little girl went right up to them and yelled at them.  I am so proud of her.  I think that was a first.

Emily started to cough last week.  I have gotten to this point where I really just dread taking her to the doctors.  We are just so over it.  We always seem to have someone get sick whenever we have plans, or at every other bad time.  I often think how nice it would be to have just one month without a doctor visit.  Wouldn't that be lovely?  We have a fantastic Pediatric Urgent Care center in our area, so I took her there.  They're open the odd hours so you can go there when your pedi is closed.  We went late Friday night.  They have their own lab, x-ray machines, and pretty much everything that an ER would have, so it seemed like the best option.  The only downfall is that they only accept one insurance per patient- not 2.  And they don't take Medicaid.  Our primary is United so I figured I'd just eat our copays because we were already there, and she felt comfortable.  We were there for quite some time, but mostly because the doctor doesn't deal often with conditions like Emily's.  (When you have something that only affects about 3 kids out of a million you find that many doctors aren't schooled on it.)  I was thrilled that he took the time to educate himself before he came in to see her.  For once it was only her asthma acting up :)  The doc put her back to 30MGs of Prednisone for the week, up from her current 9MGs.  We took her back to our regular pedi a few days later.  She was clear, no asthma detected.  Somehow, I wasn't really surprised when the nothing turned into a sinus infection.  Our pedi actually told us to keep her inside until May.  I'm not really sure how practical that is, but we will try.  We go back to them on Monday, and then for her Remicade on Tuesday.  I plan on asking her pedi if it's ok to take her camping.  I have been dying to go;  camping is like a vacation for me.  I need to be in the woods, need to bond with nature for a while.  We put off so many things already.

While Emily is recovering slowly from her sinus infection, we are counting down the days until her next infusion.  She's only been on Remicade since October.  We're still trying to find the right dosage for her.  Normally we would have gone this week for her infusions, but the school & hospital is on spring break.  (Crazy, eh?)  That means waiting an extra week for her arthritis meds.  Poor little bean is not having a good week.  First it was her wrist, then her knee.  Those seem to be better by now, but now it's her back.  She was crying trying to get into her bed tonight.  :(  Her back is hurting her so badly right now.  I thought that it was the muscle that she pulled at PT a few weeks ago, but Kevin is brilliant with massaging and feeling muscle abnormalities and he thinks it's the arthritis.  (When it comes to muscles, I couldn't feel my way out of a paper bag...)  I'm hoping that she can get through the next few days with minimal pain.  Tuesday we'll have a very long drive.  I hope she can handle it.  I bought her "Tangled" since we all loved it so much.  Maybe I can play that for her on the way up to the hospital to take her mind off of the pain.

Speaking of pain, the bills from these types of hospital/ doctor's visits are crazy!!!  People may have thought that I was crazy when I said that I got social security for her, but look below at this insurance statement.  This is what I get from our primary, before it goes off to Medicaid.  (Thank you, Lord for Medicaid!!!)  How can anyone afford copays like that???  I surely could not afford to pay $1100 a month just for treatments.  Granted, it's better than $10,000 but, really???  Nope, she doesn't have anything serious wrong with her.  We just like to waste money.  Yup.  I've heard that IVIg's cost something like $36,000 each.  How can anyone afford these things?   This is why I support the Arthritis Foundation's quest for a cure, and funding for NIH.  (National Institute of Health)  There has to be some better way to get people their medicines than IV only.  There has to be other treatment options waiting in the wings for when these meds no longer work, but you've run out of options.  There has to be a cure somewhere, some way.  We just need the right people working to find it.  It isn't fair for our kids to suffer so greatly, or for adults.  It's so sad when your child tells you that they are looking forward to their infusion.  To me, that is just wrong.  We need to support better research, but we also need to raise awareness that many diseases under the arthritis umbrella are autoimmune, not caused by old age.  It's just as unfair for someone to tell these victims that they can't be hurting because we can't "see" their pain. 

Remark Code Description Date of Service		Billed Amount		Network Discount		Applied to Deductible		Paid by Plan		Patient Responsibility
D2* Op Misc. Services 02/01/2011  - 02/28/2011	$9,474.30	$3,979.21	$0.00	$4,396.07	Coinsurance  $1,099.02
Subtotal(s)					Coinsurance  $1,099.02
Totals	$9,474.30	$3,979.21	$0.00	$4,396.07	$1,099.02

	Amount You May Owe	$1,099.02