Tuesday, June 14, 2011

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!

Friday, June 10, 2011

In response to Frank on the Lupus- Pesticide connection

Tonight I received a new comment on an old blog post.  I started to comment back, but I thought that maybe my answer could get other people thinking, brainstorming.  This is a topic that fascinated me long before Juvenile Arthritis dropped into our lives.

Frank said...
I wanted to share this article with you. Lupus connection to pesticides.
What are your thoughts?

To sum up the article, the writer states that many people that have Lupus also had much more exposure to pesticides than their healthier neighbors.  Many of the affected were females that lived or worked on farms.  They write: 
The most affected group were women who lived on a farm and applied pesticides themselves for 20 years. They showed a three fold greater risk of developing lupus or rheumatoid arthritis as the women who did not apply any pesticides for 20 years.
The group of women who did not live on a farm but regularly applied pesticides for 20 years and the group of women who did not live on a farm and applied pesticides only six times a year had a two times greater risk of developing lupus or rheumatoid arthritis as the group who did not apply pesticides. “
I would never rule that out as a possibility for many affected people.  I think that many man made items and foods can cause more harm than good. 

I do think that much of it is genetic.  On our boards, we have had many discussions.  One thing that we have discussed is what other autoimmune issues we have in our families.  My family, for instance- I have Rosacea (which I’m now reading ISN’T an AI, but I am sure that I read before that it is) and thyroid issues (nothing severe).  My husband has thyroid issues, and had thyroid cancer.  He also recently got his first psoriasis patch.  (Our son has psoriasis, too.)  His father suffered from two types of cancer before passing.  His mother passed away from complications of diabetes.  She also had thyroid problems.  His brother is diabetic, and has psoriasis.  Their maternal side had diabetes and thyroid issues running rampant.  Their paternal grandmother has RA.  She is currently 93, and she was diagnosed at 19.  She said that she had symptoms for years before that, so she likely had JRA. 

My family is relatively autoimmune- free.  My mom won't go to a doctor so Lord only knows with her.  My paternal aunt is being tested for Lupus, and another aunt has had thyroid issues.  That's about it for us.
Reading through the posts on my JA & JM boards, many people that have children with autoimmune conditions have families that are riddled with autoimmune conditions.  Genetics has to play a rather large part.  I can't tell you if perhaps some environmental trigger can just set off an autoimmune reaction in people that are genetically predisposed, or if perhaps the trigger is far less important than the genetics.  We’ve come so far with all of the breakthroughs made for heart disease, strokes, cancer, etc, but when it comes to autoimmune diseases, we still can’t answer the question of which comes first.  This area is virtually unknown.  There are many autoimmune diseases, but for some reason many are not taken seriously.  The American Autoimmune Related Diseases Association, Inc has a list of all autoimmune diseases. 

Vitiligo is autoimmune (white patches/ loss of pigment of the skin) as is Alopecia (hair loss).  There is autoimmune Alzheimer’s, Autism, Lyme Disease and hearing loss.  Psoriasis can produce not only the scaly, painful- looking dry skin patches, but it can also cause a different form of autoimmune arthritis- Psoriatic Arthritis.      

Many people are affected by these diseases.  Do they all have the same trigger?  Does each disease have a different trigger?  We need to find out.  These are very important questions, with life changing answers, but when will we find out these answers?  I’m going to do my best to gain awareness and try to help find the answers.  Maybe it does lie in pesticides.  That could certainly be a major reason since many foods are tainted.  But one day, I want to know.  Will you help?  Raise awareness.  Please.

Thursday, June 9, 2011

The elbows, labs & PFT

I've had some concerns.  I had a list of things to bring up at our last infusion, but since the doctors weren't in, I thought I'd wait until our next appointment.  Also, her labs were only 2 points out of the high range, so I was concerned that it could be a flare starting or it could be that her dose of Methotrexate was too high.  She was hoping that would be it.  Emily has always been the child that actually liked her Methotrexate shots, but she says that she isn't as fond of it at her current dose.  Well, I guess I worried for no reason on that note.  When I called to discuss a few things today, the nurse practitioner said that her labs look great!  I had thought her liver enzymes looked high, but she said that everything is right where it should be.  We still had other things to discuss, though.

While we were at Occupational Therapy yesterday, her therapist looked at her elbows again.  She determined that she has tendonitis in both elbows, her left being worse than her right.  She and the nurse practitioner both agree that it could be regular tendonitis or it could be from the Dermatomyositis.  The current plan is to increase her NSAID (Mobic) to the correct dosage for her weight.  Until that kicks in, we should double her Prednisone for 3-5 days.  We can use ice or heat, and rub in BioFreeze as needed.  We will also pay attention to what her appetite does during this time.  She said that her poor appetite may be direct result of the Prednisone taper; it may be a sign that she isn't ready to taper down any more.  We should monitor her appetite on the increased dose, then monitor it again on her current dose when we go back down.  

My last concern was how often she's been getting sick.  It seems like she's been sick constantly.  Every month she's been on at least one, sometimes two, antibiotics.  Granted, she's on 3 immune suppressors, but she was on 2 for years and didn't get sick as often.   I have been concerned about the Pulminary Hypertension risk (23%)  that she faces from the Mixed Connective Tissue Disease.   She has asthma.  I worry about this more, especially considering that every illness that she has had in the past 6 months is from an upper respiratory, or a direct result of asthma.  The ARNP said that it could be that her immune system needs a boost from all of the suppressors.  That could be determined through labwork, so they will add that immuno- panel to her list for next time.  I requested repeating her Pulminary Function Test.  Her last PFT was on her last day in the hospital.  She just wanted to go home, she didn't want to be there, she was scared, and she was simply not having this.  Needless to say, her test results came back "inconclusive".  Since pulminary hypertension may not be picked up on during regular exams, I think this is a great idea, and should give us peace of mind.

All of this together *could* mean she may be starting to flare.  I have no idea what to think at this point.  I had thought that her arthritis was flaring, until I saw her labs, which made me believe that it was the JM flaring.  Since I read the enzyme labs wrong, and the ARNP says even the inflammatory markers (that I didn't see before) came back great, it no longer looks like the labs point to it.  But I'm still confused on the elbows.  And the tummy.  <*Sigh*>  We'll get it figured out.

So, we have a full boat next appointment.  What will we do to top that?  Drive straight to DC for the Juvenile Arthritis Conference!  This works out better, actually.  Our appointment is on the 6th and the conference is the 7th.  We'll be 2 hours closer from the hospital, this will save us a trip in a way.  And we can stop somewhere overnight, taking our time.  I think it's perfect.  This way we won't be in a hurry, we have some down time, stopping time, and we should get there in decent time.  All the way around I can't wait!   So many people that I can't wait to meet "in person", so many questions that I have, and so many historical sights that I can't wait to show my children!!!  This is going to be so wonderful!  :)  Thank you, Arthritis Foundation!!! 

JA Conference 2011!

Well, I found out from our Arthritis Foundation branch that we have been given another opportunity to go to the Juvenile Arthritis Conference this year!!!  I am so excited!

Emily was first officially diagnosed with arthritis on January 10, 2008.  We pretty much had to go it alone for the first two years.  I had done tons of research, but I never found any blogs or anything for the first couple of years.  I found a group, the "JA List", but I had a hard time keeping up because I work full-time and I'm crazy busy.  I could read and keep up a bit, but I didn't feel a "connection".  Honestly, I ended up spending more time reading the Caring Bridge entries of a woman on this list.  She wrote about the horrible battles she and her little girl were fighting, trying to beat her arthritis.   For whatever reason, I felt a strange connection to her, to her daughter, and felt somehow that her daughter was similar to mine.  Granted, our battle wasn't nearly as tough back then, and it still isn't anywhere near the level that this little one had to deal with, but I really felt they had some crazy bond.  Well, anyway, I read those blogs quite often, but still never really felt the full effects of the list.

In March of 2010 I ended up receiving an invitation for lunch with some other parent's of JA kids and a member of our (somewhat local) AF branch.  (Luv ya, Tony!)  This proved to be a life-changing lunch.  This was the gateway that connected me to several of our area families, and a webpage that one had started just for JA families.  Facebook started to become a tool for me to connect with these people.

After I met these people, I started to utilize my blog more.  I had originally started it anonymously to gripe and complain, but I soon discovered that I didn't really do that.  I later found Blogger and realized how easy it was to network.  Suddenly I had a small (but growing) collection of blogs to follow, mostly written by families with children suffering from JA.  A few of them found me on Facebook.  I found a few people from the 2010 JA Conference on FB, wishing that I could have met them in Philly.  The week that Emily was hospitalized, one of these FB mom's started a group called "Arthritis Friends".  This family has completely changed my life.  We now have 204 members, all of whom are amazingly encouraging, helpful, kind, and supportive.  Several of us are going to the conference!  We're trying to figure out the best ways to meet up :)

At last year's conference, I learned a LOT.  Even having already done a ton of research on my own, I still learned a lot.  There is truly something for everyone, from newly diagnosed to the fairly well self-taught.  Just to be able to go and socialize with other people that understand is amazing.  It's a wonderful way to make new friendships!  What does it bring for the children?

The children have the opportunity to be with other children just like them.  These kids are given the chance to be "normal".  They can share and talk about their disease(s), or not.  They play, make arts and crafts, have special events, and they have speakers that come to speak to them.  They learn a bit about how important advocacy is, which I thought was really cool.  Most importantly, they have other people that suffered from JA that offer up hope for their futures, and help them with coping mechanisms.

Who watches these kids?  Well, the PALS in Emily's room last year worked for the Arthritis Foundation.  Why are they there?  To see who they are helping, to see the quiet strength and courage that our children have.  To know that they working for a good cause, and to help them recharge and work harder through the year for our children.  I am so grateful that this life- changing tool is available to us.  I can't wait to go and meet my family that I haven't met yet, and see those that I have!  I love you ladies!  <3

*** I've met my best friends on FaceBook***  <3

Tuesday, June 7, 2011

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!

Friday, June 3, 2011

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.