Another good rheumy appointment for both

Yesterday was a very long but good day.  Taking two kids to the hospital for 8 hours isn't really my idea of a good time.  It's rushed and crazy when you're taking one child, but two presents a whole new challenge.  Thankfully I have some really great kids, but it's still difficult.  Filling out everyone's paperwork, getting drinks and snacks, just getting settled!  I brought the laptop, foolishly thinking that I could get some work done.  In reality my son used it more than I did.  It was a great distraction since he was kind of driving me crazy.

For once we stayed at a hotel.  I didn't want to have to get up at 4 A.M. to drive up.  Not with 2 kids.  The morning went just as planned, except that I didn't sleep.  Emily's new antibiotic isn't doing a whole lot, so she was coughing most of the night, which kept me up. I was afraid that it was waking her up, but in reality she actually slept.  We got up on time, packed up, had time for breakfast and got to the hospital with time to spare.

The doctor saw Zachary first.  Despite us keeping the other staff in the loop, he didn't know that Zach had only just received his Enbrel in the mail.  He had thought that he would have had 2 full months on it by this point, but in reality he only had one full dose.  We could see that the Methotrexate is doing what it's supposed to be doing.  His jaw pain has been minimal, and the psoriasis plaques look much less angry.  Still present, but not terrible.  Again the doctor noted that Zach's hands look like Emily's... without the steroid swelling.  It really is curious.  I pointed out that the psoriasis is trying to take over his joints.  He didn't really say much about that other than agreeing with me.  We agreed to keep on the same track with him as we are, making sure we get him in to the opthamologist and have his labs repeated in two months.  His liver enzymes are up.  His ALP and Sodium are off, too.  In reading up, it looks as though a low ALP often shows a Vitamin D deficiency, and many people with autoimmune issues are vitamin D deficient.

Emily requires much more time, so he left and came back to us.  That gave me some time to call her ENT and see if we have a surgery date yet.  Apparently they hadn't thought about that yet, so they scheduled it with me on the phone.  We are set for February 22nd for the first procedure and March 13th for the second.  Our rheumy was upset that she hasn't consistently been on one antibiotic for 21 days.  I need to make sure if either of my 2 little children has an actual sinus infection that they stay on antibiotics for a full 21 days.   I pointed out the red dots that she keeps getting.  It's really strange.  He said that these spots look like spots that some people get when their white cells crash, but hers look good.  Very odd.  Thanks to the ENT's calling for surgical clearance, they ran the immune system panel.  Honestly, I feel that she should probably be on monthly IViG, but I don't want to bring it up.  I don't want to pump more into her than we have to, and she's already on a ton of medicine.  We discussed that her ankles, knees, hips, wrists and back have been flaring mildly in the joints.  Praise the Lord her muscles are quiet!!!  We also discussed her sinus problems.

So, I am blessed with pediatricians that realize that I know what's going on.  They LISTEN to me.  They may not always agree which is fine- they have the medical degree, so we try it their way.  But they listen.  Since November Emily has been on :


Septra- (Sulfamethoxazole-TMP)  January 27, 2012
Augmentin 600MG - January 19,  2012
Omnicef 250MG-      January 13, 2012  (Again did nothing but make her more sick) 
Augmentin 600-         December 28, 2011
Clindamycin HCL-    December 14, 2011
Omnicef 250MG-      December 11, 2011  (Did nothing- she got sicker)
Augmentin 600MG - November 28, 2011

When the last round of Augmentin stopped working midway through, I called and begged them to please give her one more round of a different antibiotic to hold us until her surgery.  Foolishly, I thought the surgery would be a week or two.  Knowing that Augmentin wouldn't work, nor would Omnicef, I asked for either Clindamycin or Septra.  I prefer Clindamycin for 2 reasons:  because Zach & I are allergic to Septra and because Septra can increase the toxicity of Methotrexate.  In English that means that this antibiotic could make her one arthritis/ myositis med work too well, like at a higher concentration.  So, I told them that I would be willing to discontinue her MTX if they prescribed Septra.  It is a triple antibiotic, and she hasn't used it ever, I think.  Our rheumy's biggest concern was that it wasn't prescribed for long enough.  I asked him if I should give her the MTX at a half dose, but he said not to worry because she has so many other meds going.  Of course, she actually likes her MTX, unlike most kids.  (Dermatomyositis causes severe itching, but the MTX decreased it a lot.)  Moral of the story- he gave us another prescription for 15 more days of Septra.  He believes that her arthritis is acting up because of the sinus infection, and once that finally clears she should be better.  I had figured that, too.  It's nice to be on the same page.   And that was about the gist of it.

Today, we were all exhausted.  It's a very long day, especially because first they do pre-meds, then SoluMedrol takes about an hour to infuse, Remicade takes about 3-4 hours, and Rituxan is set for 4 hours.  She's wiped the next day, but so am I.  Even Zach was wiped.  We did almost nothing today, but I did make her go to therapy.  And she cried a little because stretching is so hard, but overall she did very well today. 

I can't tell you how amazed I am with her, how in awe of her I am.  She will correct you if you call her medicines the wrong name, she will spout off the list of her meds, she will talk to you like she's a doctor, but at the end of the day she's acting like a cute squirrel that just wants to be petted.  She is truly such a joy, so sweet, so wise.  I am so blessed.  <3

Would you help if you had the opportunity?

Do you have RA?  Or does your child have JA?  Are you tired of hearing things like "Oh, I have arthritis, too!  In my pinky sometimes", or "Oh yeah, Aleve really helps me", or better yet, "Kids can't get arthritis!  Are you sure that's what's wrong?"  Have you ever wanted to find a way to help but, Arthritis Foundation walks aside, you haven't been able to find a way to help?

I've said recently that it's an exciting time to have arthritis.  People are getting tired of hearing those comments.  People are tired of doctors not understanding.  People are really thinking that Rheumatoid Arthritis should never have been called arthritis.  WE are tired of the stereotypes, the stigma associated with it.  We are demanding change.  Do you want to help?  Here's how. 

 I volunteer with a new non-profit, the International Autoimmune Arthritis Movement. We are recruiting volunteers to help with tasks- all by using your computer.  We are trying to get the phrase "Autoimmune Arthritis" out there.  The first step to coining a phrase is to actually get people to use it!  This will help a lot.  But there are other things, too.  Do you also write an arthritis blog?  You can be a blog leader!  Or at least allow a link to your blog.  Are you great with researching?  There have been opportunities for that.  There are so many things that can be done- all by sitting in your home at your desk, or wherever you are.

Also, right now we are looking for all sorts of pictures for the newest venture.  Pictures of body parts, people (adults and kids) getting infusions or injections, rashes from your autoimmune disease, or anything else that can help to accurately portray the real faces of arthritis. Does this sound interesting?  The first step is to email Tiffany at tiffany@iaamovement.org.  She really asks for very little of your time, but that little bit can make a big difference. 

***Thank you SH for reminding me about the pictures!

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.

Oh, sinuses!

 Before I had chronically ill children, a sinus infection in one of the kids was like a major catastrophe.  I can honestly say that today it's just another "little" thing.  Wednesday after school Emily announced that she was stuffy again.  It was a whole 3 days off of antibiotics, I think.  We can't seem to get past that point.  She was started on Augmentin in late-November for the first sinus infection.   We tried Omnicef the first week of December, then Clindamycin, then another round of Augmentin. 

As our pediatrician said today, "It would be foolish to keep trying round after round of the same antibiotics, hoping that they'll work.  Obviously, she needs something more.  I would like her to have her sinuses swabbed.    I believe that she needs IV antibiotics, and a swab will help us to determine which will be best."  She was preaching to the choir there!  I said that at our last appointment, but to the other doctor.  So, I spent the day making phone calls about insurance, working on getting CT films, and contacting our ENT.  We are very familiar with our Otolaryngologist.  He placed Gir's tubes, and removed her adenoids and Emily's.  We are set to see them on January 25th. 

I also found out today that somehow Zachary's insurance info and note that I brought to the hospital to pass on to our rheumy's got "lost".  His insurance info was never updated, and a new prior authorization not yet started for his Enbrel.  That's ok.  I love them, accidents happen, we move on.  I called today and spoke to someone about it, and also found out that Emily's infusion room appointment isn't written in.  Hmmm.  Now, I know I made the appointment.  I made it when I made Zach's appointment to see the doc.  They were for 2 different times.  I have it written down.  Somehow hers is gone.  That's ok.  We will get it fixed.  We are still a couple of weeks away.  I will not panic.  And I emailed one of the awesome nurse practitioners, so I am not going to worry.  I guess it's a good thing that I never got to work.  I kind of got overwhelmed.  First by Emily saying how crappy she felt, how tired she was, and how she really didn't think that she could make it through school, and then looking at the phone calls that I needed to make that I couldn't really take care of from work.  What I couldn't get done today I can finish on Monday.

On a different note, my friend and fellow blogger who writes "Jenna's JIA & Uveitis" blog has a really cool fundraiser going on to help support arthritis research.  Click here to go to her page to check it out.  Jenna has had a long fight, but she is also a trooper, and her family is amazing!!!  Please help them out if you can!

How can we change things?

It's been a while since I asked this question, but this week it has weighed heavily on me.  How can we change the image of arthritis, the way that people perceive it?  I truly think that the autoimmune forms need to be called something other than arthritis.  Often, arthritis is a symptom of the disease, not the disease itself.   I find myself wondering why they decided to call the autoimmune forms arthritis?  Consider this:  If I told you that my daughter had an illness that was chronic, that caused her body to attack itself from virtually any angle, that it can (potentially) cause many different ailiments such as inflammation of the linings of the heart and lungs, can cause liver and kidney failure, can cause seizures and demylenation of the brain (in some forms), as well as render her unable to walk because it attacks her joints and muscles, would you take it more seriously than my saying "Oh, she has Juvenile Arthritis"?  Even when I say things like, "She has MCTD, like a sister to Lupus, & Dermatomyositis, which is rash & muscle inflammation so severe that it can destroy muscle tissue", people don't get it.  The serious nature of the diseases that fall under this umbrella are deemed unimportant simply because they contain the word "ARTHRITIS", which people associate more with their grandparents than my little people. 

In many ways, this is an exciting time to have arthritis, if you really have to be afflicted by it.  (Humor me; I'll get to why in a bit.)   For one thing, there are many children that are affected.  About 300,000 children.  There are more children affected by arthritis than children affected by Juvenile Diabetes, Sickle Cell Anemia & Cystic Fibrosis combined.  One would think that there would be more awareness.  Could it be because even many of the parents of these children underestimate this disease?  I think that is true for many.  There is a large percentage of kids that are "pauci" (less than five affected joints) and a good percentage of "poly" (5 or more affected joints).  Many of those kids do well with just an NSAID, or an NSAID and Methotrexate.  Some kids need a little bit more, and they have Enbrel or Humira added.  And many of them are still able to function at the same level as their peers.  They can still play soccer, dance, jump and play just like their friends.  And then there are the kids that don't seem to respond to treatment.  The doctors can't get them under good control.  These kids miss a LOT of school.  Many of them are on steroids, and have the terrible side effects that come with them.  These kids don't have the same quality of life as their friends, and they are often perpetually sick.  Most of them have daily pain.  Some of them have had daily pain for so long that they don't even notice it anymore.  It's just something that they have learned to live with.  And the adult sufferers seem to tell a similar tale.  How is that acceptable?  Why don't we have a cure yet?

When you tell someone that your child has arthritis, you get some crazy looks.  You get a ton of unnecessary advice.  People think that you just haven't tried a healthy enough diet, or that you have done something wrong.  "You don't really need all of those medicines.  Why don't you just drink a bazillion gallons of prune juice every day?  That will do it.".   Ummmm...... no.  It really won't.  Lately, the people that are getting diagnosed are getting angry.  They are so thrilled to have a name for it, only to find that no one takes "it" seriously.  They are pissed.  They feel robbed, and they're tired of being made to feel like they are just exaggerating their pain, or they are wimpy and weak.  Finally, because of the wonder of the internet, people are banding together in an effort to create change.  Not Obama's change, but they are demanding that they be taken seriously.  WE are demanding it.

My huband's grandmother is still alive.  She is almost 94.  She was diagnosed with Rheumatoid Arthritis (which we shall now refer to as either Autoimmune Arthritis or Rheumatic Arthritis Disease) when she was only 19.  Being around 1918, I imagine that she had RA for a long enough time period before she was diagnosed to likely have qualified for a Juvenile Arthritis diagnosis.  She has suffered for many years.  Suffered.  People didn't have the resources then to storm the AMA and demand change.  They weren't able to enlist 11,000 of their closest RA friends like Kelly, the RA Warrior.  They didn't have the ability to create and find massive audiences to help with creating non-profits like Kelly with her new non-profit, the Rheumatoid Patient Foundation., or like Tiffany.   When she was diagnosed, she was so happy to have a name... until she saw how people didn't take it seriously.  Tiffany recently created the International Autoimmune Arthritis Movement.  Patients are tired of feeling like they need to hide.  Why should they have to?  They are far from lazy, weak or anything else that people may call them.  They require help.  It's a disease.  Not caused by wear-and-tear, but a disease.  

We are pleased to have a new force that has recently risked her career to "come out" about her RAD.   Christine Schwab recently published her third book, "Take Me Home from the Oscars: Arthritis, Television, Fashion, and Me.  She is also "scheduled to appear on a segment of The Doctors, which airs January 13th on CBS. Check your local listings for times. Hope, JA Kids, and good information. Share the new for arthritis awareness!"  My parting point is a copy of one of her posts on Facebook.  She does have an excellent point that has me thinking that I need to re-evaluate my position, but for now I stand firm.  Christine says:  "I am posting this on both my pages because I feel it's important.
MY OPINION ONLY!
I know there is a lot of talk about changing the name of RA to RAD. I understand. I have RA and when someone says to me "oh I have arthritis too in my pinky finger" I want to scream. This is why I am working to change the stigma of arthritis. But coming from a media world I don't agree with changing the names of the arthritic diseases. When I first started on my campaign to remove the stigma in May of last year I was all for giving arthritis a new name. Now I know that is not the way, at least for me and the media. I want to simplify arthritis. Make it a "Readers Digest" definition of what arthritis is and isn't. So because I don't post and forward this campaign doesn't mean I am not supportive. I simply have a different approach that so far is working. I support everyone and everything in arthritis. We are misunderstood and underrated. But that is changing. Our community knows all the various diseases. Most of us understand them but we now need the public to be on our side. To understand. These are my goals."  Well said, Christine.  As long as we're all fighting together, it doesn't matter if we don't all always agree.  We appreciate having more people joining the cause.