Running underwater

Everything about this nasty disease just sucks.  Every time we do blood work we hope to see a normal white blood cell count.  It has not been normal in over a year.  That is in fact how this all started, high white blood cell count.  So every other Monday we find ourselves a bit disappointed and just feeling as if we have no idea what to do.  I even asked her Rheumatologist if we can just consider high her new normal and was reminded that high is not good and not a new normal.  So each appointment we add a new medicine or increase an existing one.  This last time we increased the cyclosporine, a potent immunosuppressive agent. 

With all that has happened this past year we watch carefully for any changes.  So far Emily has improved so much health wise and emotionally.  The rash has not been around at all and she hasn't had a fever in a year.  She is happy and off physical therapy completely, although we continue with water therapy to keep her joints moving and help increase strength.

In the past few months we have noticed a decline in school.  She is only in kindergarten and since her birthday is at the end of the year she is one of the older children in the class by virtue of missing the cut-off date to enroll.  I just happened to mention this to the Rheumatologist because I know inflammation can occur in the brain and at her onset she had an episode of night vomiting, a symptom of pressure in the brain, and Vasculitis (inflammation of blood vessels) is a constant plague.  When I mentioned it the doctor replied immediately that yes this nasty disease could cause learning disabilities, but to find out if that is the case we'll have to do more testing and that can cost up to $5,000 because it is not covered by insurance, even our great insurance. 

So, since the brain is a muscle we are going to start getting Emily to exercise her brain more.  If she tells us she wants to learn something, she asked if she could learn Spanish, we say yes and so she is going to her first Spanish class after school tomorrow.  We don't know how well it will work out, but just like teaching her how to exercise her joints without hurting them we've now got to teach her how to work around any learning difficulties she may have.

There is just so much nastiness to this disease that such a short time ago we didn't know even existed.  Have you ever had a dream where you are trying so hard to run fast and you can barely move as if you are trying to run underwater? That is how we are feeling right now; but we shall keep pressing forward and do whatever we can to tell everything that children get arthritis too and they need a cure!

renewed hope

March 2012


March 2013

Last Easter our egg hunt was in the hospital and Emily was so sick she couldn't walk or stand up from sitting without help. Today she has an egg hunt with her Kindergarten class and she was hopping around class when I left her. Easter seems an appropriate time for good news, we have a renewed sence of hope.

Emily's white blood cell count dropped to 16, still elevated, but finally coming down instead of moving between high (20) and high high (30+) (labeled HH on the results). To give you some perspective on what that means; normal levels are 10, 16-18 means you're sick with a virus or infection, 20+ for prolonged periods means something is seriously wrong and 30+ is when they start looking for cancer.

We aren't weaning steroids until we get lower, but moving in the right direction and our next infusion is Monday.  The rash has popped up a couple of times this week, but it's been very short lived and Emily seems to be more active than ever since her onset so today we have reason to be optimistic. 

I won't even say remission yet, but I could see us getting off steroids by next year and then maybe once we get to that point infusions will not be so frequent.  We will still take it a day at a time, but we have reason to be hopeful this Easter and we thank our Heavenly Father for this second chance for our daughter. 

So many ways...

This disease has changed Emily's life in so many ways.  This morning my husband made the mistake of using the word skinny and Emily began feeling bad that she was not skinny, like she used to be.  She means she doesn't look the same anymore; the steroids cause puffiness which gives Emily the appearance of being overweight.  In fact when she take her anywhere and she rides in the stroller, like the zoo yesterday, people will often stare at her and I feel like they are probably thinking something like "Why is the child in a stroller, she should be walking" or perhaps the term "childhood obesity" goes through their mind.

Even with the weight gain Emily is only in the 30% for height and weight so she is not overweight at all and she is very active, but until we shake the steroids completely we won't be able to shake the puffiness.  Even once we do get off steroids we won't be able to shake this nasty disease.  It's here to stay and there are so many things it impacts.  Going somewhere like Disney Land, that would be a monumental task because steroids + exhaustion + stiffness and pain from an all day adventure = super tantrum or at the very least extreme whininess. 

We have to be careful what we say; we don't talk about weight (or try not to) instead we talk about getting plenty of exercise and eating healthy.  We don't talk about Emily having children, instead we are sure she understands that adoption is a great way to become a mother too and we encourage her to learn and say maybe you could be a doctor or a scientist someday.  Someday we will have to explain to her that these new medicines could make is hard for her to have children.  I imagine when she marries that will be a scary point for her, when her husband and her decide to try she will wonder...

Dentist visits are another thing we learned yesterday.  Cavities are common with this children because they are immune suppressed and cavities are caused by bacteria.  The medicines can also reduce saliva in the mouth and make her teeth and enamel more susceptible to decay.  Now she has a cavity to fill and I don't want to put her through that, but we have to because cavities are because by bacteria and we need to get rid of the bacteria.

We talk about finding the good out of the bad.  I'm afraid I have yet to find the good out of this nasty disease, but I still have my sweet girl and if this had been five or ten years ago I would not and so I can at least say treatments have made progress.  I wish more people knew what this did to these sweet children.  I read a post in a Facebook group about a SOJIA child who tried to commit suicide.  These children are in pain all the time.  It breaks my heart to think what that mother is going through right now.  We've just got to keep showing Emily all the good in life to help the puffy badness of SOJIA maybe not seem quite so bad.  I hope we can do that as she gets older.

First day of school! First day of School! First day of school!

Emily’s first day of school was this week and boy was it rough, on me.  I did not like how it felt to realize she will be depending on others to learn and grow now as well and from me and my husband.  I’m not a big fan of outside influences in the world we live in today.

Aside from how I felt, Emily really seemed to enjoy it.  She even had her teacher reading from Taking Arthritis to School.  We know because we had to interrupt the reading to pick her up for her infusion. 

First day of kindergarten + Actemera infusion = bed time at 5:30 p.m.

I’m still trying to decide if I was more upset about my sweet girl growing up and moving on or because there are so many germs and ways to get hurt at school.  What if someone comes to school with the Chicken Pox or Strep Throat or a cold?  Too many worries.

Her teacher was very nice though and after we discussed our concerns with her suggested we write a note home to all the parents telling them about Emily’s suppressed immune system. We did.  How much of an impact it had we may never know although if Emily does not come down with any viruses this year we will credit the letter with success and try again next year for sure.

Emily does enjoy school, but we can tell it is hard on her.  She comes home exhausted, usually immediately falls asleep and then doesn’t want to go back.  Since she’s been sick she doesn’t like doing things that require a lot of work so school and swimming lessons are on the top of her list right now. We’ve taken it upon ourselves as her parents to push her to work though; it’s part of learning to live with this nasty disease.  Even though she wakes up stiff and in pain she’s got to move past it to live so we are trying to teach her how to cope (warm baths and extra early bed times) and how to suck it up (sometimes life just hurts). 

It’s a learning experience for me.  I hate negative people and believe anything is possible, but trying to instill this belief into a five year old is not very easy, especially when she learned earlier this year that there are things you just can’t do when your body attacks itself, at least you can’t do them until the medicine kicks in.

Our new rule for this school year is every time Emily says “I can’t.” she has to stop and say “I can” five times. We’ll teach her she can even if she doesn’t want us to.

 

Here’s to the rest of the school year being good and Emily getting strong enough to take on first grade.

The stages of an infusion

 

1. Anxiously waiting

 2. The IV, includes screaming and lots of stress for all involved

3. Exhaustion

The infusion is no fun, Emily hates being back in the hospital even for a few hours, she hates the IV and let's face it those hurt, she is always asking about when the next one is and how long till it happens.  "How many days till my fusion?" is the big question on this sweet girls mind.  It seems to be working so far, other then being tired a lot there is no rash or fever present so we are happy about that.  We also talk about how she has no more shots.  Since the Kineret burned so much we try to tell her how this is so much better the infusion is, but I don't know that helps much.  Nothing about this nasty disease is pleasant.

No exceptions!

After Emily was officially diagnosed with Arthritis I started looking into swim lessons.  The Arthritis Foundations recommends swimming as a great exercise for your joints and so I figured if I could bother Emily and her brother deep into swimming early perhaps it would stick with them.  At the very least they would know how to if they decided that was their exercise of choice.

Once she was out of the hospital I began looking for programs.  Anything private or semi-private was out of our budget so I turned to the YMCA.  It's still $50 per child for only four lessons, but that's better then $180.  Emily's brother is at risk for JIA in general because it's probably genetic and he is our child too; besides that we aren't going to leave him out so that doubles the cost of us.  I've tried teaching them on my own, but I don't have access to a warm indoor pool and we all get cold easily in the outdoor pools here so it becomes cold and unpleasant very quickly.

Anyways, I called the local YMCA to see about signing up Emily for some lessons.  The ones for her age group were without parents in the pool and since Emily is still pretty weak I knew she'd need some extra help so I figured it was as simple as telling our story and getting permission to be in the class with her.  No.  It's not allowed. No exceptions.  Not only that, but the Tai Chi class the YMCA has that is sponsored by the Arthritis Foundation is not for anyone under 15.  No exceptions.  In fact the YMCA made absolutely no exceptions at all.  I couldn't get a manager to call me back to talk to me and the only class I could get into the water with Emily was the infant class.  At first I figured that would work out because her brother is only two and would be in it with me, but we ended up paying $100 for one lesson for just Emily where she was completely ignored by the instructor.  It was horrible.

First, Emily was sick with a cold for the first two classes.  I can’t risk getting her sicker when she has a suppressed immune system.  So I thought perhaps they would understand our situation and allow us to reschedule for another class.  No, no exceptions.  Then it turned out the class was during a holiday weekend so there went another class, they just canceled it.  Finally we made it to the last class and it was an epic failure.  Emily's brother refused to even get into his swim suit.  I paid $50 for him to watch class and another $50 for the instructor to ignore Emily.

Emily and I got into the water a little early to try to get her warmed up.  Anyone with arthritis or joint problems knows warming up is important.  Not at the YMCA, that is not allowed.  No exceptions. We had to get out of the pool and wait five minutes for class to begin, wet and cold. Finally class begins and the instructor comes around to each child.  I tried to explain to her why Emily was a five year old in an infant class, all I managed to get in was that Emily has arthritis and is not as strong as other kids her age.  The teacher took Emily from me, sung the ABCs to her, returned Emily to me and then ignore Emily the rest of the class.  Leaving me to try and get Emily to do the kicking and bubbling on my own.  She skipped us each and every time she went around the class after that.  Finally Emily was not enjoying herself and I was beside myself with disgust so we got out and left.  I didn't even change out of my swim suit.  It was a horrible experience to realize that even though you ask for help and seek out things that will help your child there are places where there are no exceptions.

My Emily

Last week I took Emily to get her haircut.  As she watched her reflection in the mirror I felt like I could see pain on her face.  She was not happy with the way she looked.  Later that day she asked me if her face would ever look the way it did before she got sick.  The swelling is what I consider severe, but we can't get it to go down until we get off all of the steroids.  With 7ml still each day getting to 0 seems like an eternity away.

We have had to be mindful of her self image now.  We no longer tell her she is a big girl, we say she is growing up.  I like to tell her how wonderful motherhood and marriage is, but now I just talk about marriage.  I realize that these treatments are so new and so life altering they may very well take away her ability to ever have biological children and I have no doubt that may be very painful for her one day.

The doctor seems to feel that it's ok for kids to be on the medicine because they aren't aware of how it changes them physically, but Emily is very aware and an intelligent child.  I wish we had a doctor who had a child dealing with this,  not because I wish it on someone else, but because there are so many daily living aspects to this disease that the doctors just don't get; such as the physical appearance and extreme exhaustion.

See, the thing is; you don't really understand what it's like until you live with the disease.  None of us understand except Emily.  You really can't fully understand what it's like to parent a child with a chronic illness until you have one. 

Even the Best Laid Plans

Ever since SOJIA nothing has really gone the way I have planned it.  Parents don't plan to have a child suddenly become severely ill and so it kind of catches you off guard.  It's like being hit in the chest.  Knocks the wind out of you and even after you recover from it you still feel like you can't quite catch your breath.  Some days it's harder to breath then others.

We took Emily to a counselor today because there has been an emotional side to this illness.  She has an adjustment disorder that is being manifest through anxiety.  The doctor was very nice and helped us put this into words to better communicate it with her school, but it still gets me down.  I think because I remember that this is for the long run.  Once again I am reminded there is no magic pill, the medicine never ends, there is no cure.

Sometimes I feel like screaming to the world; this isn't fair.  We did everything right; this shouldn't be happening to our baby so make it stop.

That's putting the breathless feeling into words.

How to manage a SUPER tantrum

'roid rage is a live and well at our home.

Most days Emily is very good at controlling it, but sometimes it is just too much for her.  I understand how they make her feel a lot better thanks to Take Me Home from the Oscars; Arthritis, Television and Fashion By: Christine Schwab.  In her book Christine talks how the steroids affected her and I can see some of those same things in Emily.  Trouble sleeping and anger are the big ones we deal with.

So last night when that angry monster got the better of her I employed some technique that I thought I'd share.

First; I have to recognize where the tantrum is coming from.  Part was her not getting her way, part was the steroids.  I blame the steroids but she could also just be frustrated with everything that has happened to her lately.  I know I am frustrated just watching this disease and all the side effects from the medicine.

Super tantrum stages:
1. Whinny, super whinny with a touch of "I'm about to scream in anger." in her voice.
2. Anger, screaming at the world.  Sometimes with words, sometimes just loud screaming.
3. It all comes off.  In the hospital she would throw the pillows off her bed, last night she threw her clothes.  This is the glorious half-way point.
4. Sad crying, no more screaming just tears and sometimes a; "I want my mommy".  This is where mom or dad swoops in to comfort her and tell her it's going to be OK.

So to handle this I put on my patient hat and wait out the first three stages.  My husband and I will acknowledge her anger and even empathize with her, but we make sure she knows how she is dealing with it is not acceptable.  She does not get what she wants.

At the last stage we swoop in and comfort her and talk about it.  Why did she feel so angry?  Why did she scream?  How can we handle this differently next time?

They have improved since we left the hospital, but any tantrum is not fun in my book.

Our daily dose of pain

Sometimes the daily injection goes well and sometimes it does not.  Last night it did not.  Emily tried to grab the needle twice.  I have to assume it is the anxiety about the pain that makes her do this because no rational child would try to grab something they know is very sharp and would hurt their hand as much as any other part of their body.

In this video the patient talks about having adult on-set Stills, same thing as SOJIA except in an adult, and he cringes before each Kineret injection.  He says it hurts if he touches the injection site and even three hours after it will still hurt him without toughing it. 

Emily screamed in anger after the shot last night.  It was painfully loud (I'm holding her during this).  Then I think about the fact I have to travel for work for two months very soon and my husband will be the one.  His wonderful sister is giving a week of her vacation time to come out and help when I first go, and it's only for two months, but I already know what she will be screaming; "I want my mommy!" and that will be so loud it already hurts my heart.

We've talked to the doctor about this and we could eventually try a weekly infusion instead, but that would be time in the hospital once a week.  It sure wouldn't hurt as bad so we may go that road, but we have to wait until I get back from my travel and Emily has come down more on the steroid dose.  Then there is still a chance she may relapse because the IV medicine could take up to a week to start working.  Then there is also the fact that Kineret is supposedly the best there is out there for SOJIA especially.  Would we be risking her health only to improve her quality of life slightly?

I'll leave you with something I read last night because it seems to fit (although I am sure Emily would not think this trial very "light" and to me is feels heavy too).

2 Corinthians 4: 17 
For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory;

Exhaustion

Out of sheer exhaustion I let Emily sleep in my bed last night.  I just am not able to function well waking up 3 to 4 times a night, getting up at 0530 for my work out, working all day and then getting back home to clean, cook dinner and spend time with both children.  I am pooped.  If I am honest too I don't clean much in the afternoons and dinner is so low key I'm not sure you can count it for much effort on my part.

It's kind of ironic because now we will have to work on getting our son to sleep in his own bed to make room for his sister so I can get some sleep.  The irony comes from the fact that we worked to get Emily out of our bed when our son was born. 

If we want to have any more children we will need a larger bed.  Which brings me to another point that bothers me.  Before SOJIA my husband and I were ready and wanting another child.  I was looking forward to coming home from deployment and starting an adventure leading to a third child.  Having a child who is so sick and will be for a long time sure cured that desire.  Eventually we will probably have another child, but I thought it might be a possibility this month and completely freaked out.  Probably because of the exhaustion; up three times with Emily, once with Thomas and let's see with a newborn that is about four to five  more times a night.  I would never sleep.

I feel guilty that I got upset about the possibility, especially now that it's not.  Derek handled it much better then I and was even excited about the possibility so maybe in a few months we can consider it.  Once we are better at managing SOJIA we can think about it again.  I'm not getting any younger and I think there is at least one more member of our family waiting to join us.  I'll have to talk myself into it.

Don't Quit

I like to read this poem three times when things feel at their worst.

When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When funds are low and the debts are high,
And you want to smile but you have to sigh,
When care is pressing you down a bit,
Rest if you must, but don't you quit.

Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about,
When he might have won if he'd stuck it out.
Don't give up, though the pace seems slow -
You may succeed with another blow.

Often the goal is nearer than
It seems to a faint and faltering man;
Often the struggler has given up
When he might have captured the victor's cup,
And he learned too late, when the night slipped down,
How close he was to the golden crown.

Success is failure turned inside out -
The silver tint of the clouds of doubt,
And you never can tell how close you are -
It may be near when it seems afar;
So stick to the fight when you're hardest hit -
It's when things seem worst that you mustn't quit.

Author Unknown

All Alone

There are some days that I feel all alone in this.  Even my husband and I don't always see eye to eye on how we should proceed.  This is so new, scary and frustrating for both of us and neither of us really know what will help.

Sometimes I walk down the medicine isles in the grocery store just looking.  I think I am looking for that magic pill, the box that screams out "Cure Your Arthritis NOW!".  I have yet to find it.

My approach is exhausting.  I want to do everything that could possibly help and I want to have started it yesterday.  My husband likes to pace us.  His way is probably the best.  Three doctor's appointments this week and three therapy appointments is a lot for all of us.  I hate it.  On the other hand Kindergarten is only three and a half months away!

I have to keep reminding myself that there is no magic pill.  There is no cure.  SOJIA is here to stay.  I'll never like it, but I'll need to learn to work with it. 

Our real job is helping Emily learn how to live with it.

My list

I now have a list of things that increasingly frustrate me.

Never say to a JIA parent:
1. It's just arthritis.  - Are you freaking kidding me?  My daughter can barely walk, can't go up steps and can't get up after sitting on the floor.  It is not "just" Arthritis.  It is an Autoimmune Disease that is devastating my child's entire body.

2. It's not a disability. - See above.

3.  She's perfectly normal. - See above.

4. Oh, so she has osteoarthritis.  No, no she does  not.  If you are confused google Still's Disease, that's an AKA for this nasty disease and will possible explain things better to you.

5. Have you tried probiotics? - I can't even think of a neutral response for this one so I kept my mouth closed.  There is no cure for Juvenile Arthritis of any variety, do not give helpful tips to parents who know more about this disease then most doctors. If there was anything that could help I gaurantee I would be investing in stock in the company that made that wonder drug.

Never do:
1. Stare. - Why do people, especially adults, insist on staring at my sweet girl.  Yesterday, after leaving the doctor's office, Emily was discussing her disease and this elderly woman heard our coversation and bagan gauking at my daughter.  Serriously this woman followed us through the parking lot staring until we went our seperate was.

Afraid

This is what we fear now.  The drugs our daughter is on suppresses her immune system. 

So when our son started vomiting I got scared.  What if his sister catches it?  Oh please no, no more hospitals for this sweet girl.

Then I felt guilty.  My son is very sick, needs me and I am worrying about my daughter instead.

He's feeling much better today. 

That's brings to mind another difficulty with this nasty disease.  My two year old is ten times more active then my five year old.  We like to go to the local history museum and when we do my five year old is the one in the stroller and my two year old is the one who is all over the place.  I am usually chasing him while pushing the stroller.

We can usually convince her to get out and walk around a bit, but not for long and all to frequently she will try to bend down and just collapse.  I can see it in her eyes, she doesn't understand why she can't bend down any more and I don't know how to get her strength back up.  We're pushing for PT, let's hope the insurance will cover it.