Friday, April 22, 2011

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....  

Sunday, April 17, 2011

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.

Friday, April 8, 2011

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.

Friday, April 1, 2011

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
Date of Service
Billed Amount  Network Discount  Applied to Deductible  Paid by Plan  Patient Responsibility 
Op Misc. Services
02/01/2011  - 02/28/2011
$9,474.30 $3,979.21 $0.00 $4,396.07
Totals $9,474.30 $3,979.21 $0.00 $4,396.07 $1,099.02 

Amount You May Owe $1,099.02