Scary pain

I'm not sure which issue it's from but tonight Emily scared me for a few minutes.  It's hard to get an accurate description of pain from an 8 yr old that's always in pain.  She told me tonight that she had a "beepy pain" in her chest, on her left side.  The pain was right over her heart.  Thank you, God... it only lasted a minute before moving to her leg, and then back to her chest but in a different area.  I'm not good at counting beats but her heart didn't seem to be at an unhealthy pace.  It just scared me.  I have no clue what that would be from.  She's not systemic JRA, so probably not from that.  She's linear (skin involved) scleroderma.  I don't think Raynaud's would do that.  Her doctor mentioned Mixed Connective Tissue Disorder (MCTD).  I haven't had a chance to read anything new specifically on that yet, but I know that all of the other issues are related to MCTD's.  I've been slacking on my researching this week just because I feel a bit overwhelmed as it is.  I'll pick it back up in a few days, but at the moment I'm still recovering from that last doctor's appointment.  I just wanted to share that with you because it's fairly rare that I get scared in such a way.  Input?  Ideas?  Suggestions?  Please feel free!!!

Joy amidst the chaos

The last couple of days have been quiet & peaceful.  I've met a few very interesting people, and learned more about some others that I already knew.  It's funny sometimes how when you think you know something you find out that just maybe you were dead wrong.  Sometimes it's a blessing in disguise.  I tell ya... the Lord puts the right people in place at the right time, and he tries to grant you blessings through the pain.  It's awesome.

Child wise... Ashley won 2 more awards at school last night!  She won  a medal for "Above & Beyond", and a certificate of achievement for outstanding performance!  She really has grown so much musically.  Once upon a time, listening to her sing through the bathroom door and around a wall while she was in the shower sounded akin to listening to a dying cow.  She was trying to sing the wrong songs as well.  She has found that her musical gift is opera, and she does a beautiful job with it.  Zachary is finally feeling better.  His cheeks and eyes look normal again.  Before they were both red.  And Emily... she's so adept at living with a horribly painful, draining cluster of diseases that even when she's feeling badly it's hard to tell... unless she's flaring.  Then you can tell by the bewildered look in her eyes, and the look of determination upon her face. 

Not that I would ever in a million years wish it on anyone, but I got to thinking the other day that at least some forms of leukemia have something like a 98% cure rate.  Like, CURE.  When she was first tentatively diagnosed by her pediatrician with JA, the first thing her doctor said was "well, it's not leukemia".  At the time, I was joyful, thrilled that at least we avoided that.  Now that we've had about 3 years pass by and the first bad flare, now that I know this is never really going to be out of her life, and that probably every day of her existence will be plagued with pain, I got to thinking that maybe leukemia wouldn't have been so bad.  However, she doesn't feel sorry for herself, so I guess I can't either.  It just makes me angry some days, and sad on others.  Even knowing in the back of my mind that we were in this for the long haul, I don't think it really hit me until this past month.  (Ya know... along with everything else!)   Thankfully, God made me extra strong.  Anyway, it's our game night!  I'll be back soonish...

Drained!!!

Today found me so tired that I didn't want to talk to anyone.  That's pretty crazy for me.  On the up side however, my son is looking better!  He still has a fever but instead of needing to go between Tylenol & Motrin every 4 hours has hasn't needed anything!  He's still tired, but not listless and napping all day.  Pretty much, I think he was somehow less tired than me today.  He also has a good color to him; his cheeks no longer appear bright red!  I had forgotten what a good throat infection can do.  I felt just like that once, when I was 18.  Someone gave me strep, and I was soooooo ill.  It wasn't the first time I had strep;  I had actually had it many times before, but this time I thought I was dying.  I had a high fever, with stomach issues and congestion.  I also thought that it was a flu.  I was so sick that I didn't want to go to the doctor's.  Thinking back to that I feel even worse for him, but at least his antibiotics are working their magic.  Thank God!  I was actually getting worried.  Generally I know what to do in these situations, and I know what's happening.  That fever freaked me out.

I needed some good news.  I can be positive through anything, but I still get drained.  I know that we will get through all of this by the grace of God, but knowing that doesn't always make it easier.  I learned a long time ago to let go, & that really helps me a lot, but I still can get overwhelmed by the enormity of the situation.  I think that's where I'm at now.  I cannot believe how much has gone wrong in the last 3 weeks.  It's a lot to digest.  We just keep getting hit by one thing after another after another, with seemingly no break, no light through the clouds.  I know that the sun is there, waiting to shine down on me and help to bring my joy back.  The past few days when I have been feeling down, Josh Wilson's "Before the Morning" has come on the radio.  This has been the song in my head and carrying me through all of the madness right now.  I know it's only the world- it doesn't really matter too much.  It's the ever-after part that I try to stay focused on, though I certainly don't want to see that any time soon!  This too shall pass.

I just got like the best hug ever from my little girl.  That heals the heart way more than just about anything else can.  I thank God daily for my family.  I truly believe that the best gift that he's given us is love.  He must love me a lot because I have lots and lots of love!

Getting tired.....

Well, after being so talkative yesterday and seeming better, Zach was worse again today.  His fever spiked back up to 104.6F and all he wanted to do was sleep and cuddle.  Both are extremely rare for him.  After finding his temp that high I called his doctor.  I gave him a dose of Motrin and brought him right in.  His doc says that it's a throat infection.  Now, with migraine number like 6 this week, I wasn't thinking very clearly.  I was still so sure it was the flu.  But thinking back, I remember a time when I had strep worse than I'd ever had it before and I was soooooo sick.  All I wanted to do was sleep.  I didn't want to talk, move, or think.  I just wanted my own bed and to be as comfortable as possible.  So, I guess it makes sense.  It didn't at first, but ok...
Everything else is mostly decent atm.  I'm just getting tired in that way that you get when everything hits you at once and just keeps coming with no break in sight.  I had one awesome year.  Usually the trend is 3 really bad ones, then a good one.  If that trend continues I'd like to go into hibernation.  Sometimes I envy the drug addicts.  I would never do what they do, or even drink like many, but it's sure fun to think about.  Caffeine & chocolate are as strong as I get, though.   :)  Someone has to be coherent!
Well, one more not-so-awesome note...   Kevin got denied for unemployment.  We knew that he would because they deny everyone at first.  It's funny because they show that no unemployment wages are listed for 2 of the 4 quarters that they look at.  He had been with his previous company full-time for 13 years!!!   I guess they'll put anything down to make it more difficult.  Great, thanx!  It is what it is.  We'll make due.  For the most part things are still good.  Frustrating a bit, but good.  Tomorrow may not be so good if I don't get to bed, though, so off I go!  Night, ya'll!  :)

Fast update

Well, after a worrisome couple of days Zachary is finally feeling better.  I usually use the forehead probe to gauge temp, and last night that read 104.6F!!!  I tried again with a different thermometer and it went down to 103.7F.  Still not the best, but better.  He just gets high fevers for things, so I don't worry as much with him with a temp like that.  Emily.... heck yes!!!  But Zach, I know what to watch for.  I knew he didn't have meningitis, it seems to be just a stomach flu.  I toyed briefly with the idea of H1N1 revisited but he has no cough, so unless it's a new strain probably not to be.  In any case, through alternating between Motrin & Tylenol with a cold cloth thrown in and plenty of fluids he's back to being loud with non-stop chatter, so I'm pretty sure he's going to live.  He's playing the Wii, jumping around and loudly narrating the entire event, so I'm sure all is well.  Emmy seems ok, & with the exception of being tired Kevin & I seem to be ok, too.  Ash has mostly been either out or in her room avoiding him, so she'll be ok.  :p  I'll update if anything changes but atm all is well!

Great couple of days

The last 2 days have been awesome, for the most part.  The only down side is that Zachary is sick.  He has a stomach flu or something, which means that we will probably all end up with it.  Yay.  Otherwise, yesterday especially was lovely.  I walked into work to find a card, a dozen donuts, Dove chocolate caramels, Lindt truffles, and Gummie Savers.  (Can't tell I'm an addict, can ya?)  Yes, I shared.  The Lindt I think I only had 3 of.  They were so amazing that I had to share with everyone!!!  All that I wanted was chocolate so that was amazing to walk in to find.  Because of Facebook I think everyone that I knew for once knew it was my bday.  Usually I don't tell anyone... I let it quietly pass by.  I really felt so loved.  We also had Brownie's last night.  We had a nice time with the kids for once doing their own thing while we adults talked.  Michelle & I both have our share of stress at the moment, so it was nice to just hang out.  We were talking til late!!!
I'm not sure why I was in such a good mood today other than Ashley's awards at school!  She won for excellence in art & excellence in music.  Originally Kevin was going to drop the kids off at school & hit up Ash's awards while I went to work.  We were scrambling to get everything figured out once we found out that Zach was sick, so I took Em and then went to Ash's so Kevin could hang home with the boy.  It was a wonderful way to spend the morning.  My parents were there, and I got to see a few other people that I know.  Even work was an unusually good day.  I hope that tomorrow keeps the trend.  Tomorrow we were supposed to head to Orlando to meet up with the other JRA families, which I was really looking forward to.  Unfortunately, since we have no clue how long Kevin will be out of work, I just can't justify using that much gas.  Last time cost us $50.  I would totally do it... if I could afford to.  I soooooo wanted to go, but hopefully next time. 
Another freakin headache for me tonight.  It snuck up on me and seems to be trying to attain migraine status.  Think I'll go lay back down.  Have a good night :)

Quiet night

So, it's midnight.  I guess that means that it is technically my birthday.  Birthdays have always been just another day, but this year it's a whole different type of different.  I am so blessed to be able to spend the day doing normal stuff.  Get up and go to my work, come home to my family, take the little people out to Brownie's.  As long as I have their love and respect... what more do I need?  I think that's all that really matters.
Today was a beautiful day.  It was warm, but not like our typical Florida hot & so humid you can't breathe.  I actually kept the windows opened on my drive home, and we had a beautiful breeze that carried through the car when I stopped.  It was quite lovely.  And the tree above my store has dropped so many flowers that it looked like snow.  How amazing is that???
Well, I suppose I should go to bed.  It is late, and I do have to be up early.  I just wanted to take a moment to appreciate the important things in life.  My son wants desperately to get me something.  He agreed that extra hugs would be sufficient.  :)  That's all I need!  Truly, I am so blessed.  I have so much love in my life.  I couldn't ask for more.

Got any sugar? Trying to make lemondade.

Well, it's been a day.  Please forgive me if I don't make any sense... writing with a migraine.  For starters, Kevin had an interview this morning that seemed very promising, but alas it would be doing something that he actually doesn't really know well enough to attempt.  hehe My luck... I went to the grocery store after dropping the kids at school.  Before we left the house it had poured enough to flood the road, but by the time we got to the school it was bright & beautiful!  Until I got out of the store.  It was drizzling a bit as I put my few things in the trunk, but as soon as I got under the overhang to return the cart the sky let loose!!!  Running back to my van I looked like a drowned cat.
The afternoon was interesting.  We had a 3:30 rheumatologist appointment today.  I know that know matter what time they say the appointment will be we are in for the long haul.  We got there at 3:10.  We were finally seen at 5:15.  They close at 5.  I expect this, so it doesn't really bother me the way that it should.  Mostly because I love the doctor & his 2 nurses.  The 3 of them are awesome, except that the doctor never returns calls.  I can call, leave several messages, email the nurses, and maybe a week later he'll call back.  Maybe.  Anyway, I had a long list of questions to ask, like do I need to get paperwork from them first for social security & a disabled parking permit?  I had questions about medicines, and symptoms.  I was warm in their waiting room wearing shorts & a T-shirt.  My child was wearing jeans, an undershirt, a long sleeved shirt, a jacket & mittens.  "Houston?  We have a problem."   She also pointed out 2 symmetrical bumps on her elbows.  He never really did answer her about those except to say baking soda.  Ok.  I pointed out that the Raynaud's is getting worse, there's an episode a day & drills at school for it, her hands are very swollen, her knees are still puffy, & she doesn't really complain so if there's more I dunno.  So, he wants us to switch her back from Methotrexate pills to MTX injections, which is what we were doing before we started the Enbrel.  He seems to think that the Enbrel has stopped responding.  I hate to say it but I think he's correct.   However, because it is not so simple to just move on to something else we are trying a new approach.  When we started the Enbrel in November 2008 we started at .4 on the needle.  After a while we went up to .5.  With her last flare we went up to .7, but you really couldn't tell.  He wants to try giving her a full vial twice a week instead, and if that doesn't do what we want it to  we will be moving on to infusions.  I have been afraid of infusions mostly because I have heard of kids being at the hospital for like 8 hours, but he said we would start on Orencia, which is only about a half hour infusion.  Enbrel is a T-cell blocker, but Orencia starts working before the T-cells.  I have mixed feelings about this for many reasons.  The biggest reason, of course, is that I'm really pissed off that MY sweet, innocent, precious little bean has to go through all of this crap.  Yeah, yeah, I know that life isn't fair, but at 8 isn't it supposed to be about like Barbie dolls and junk food???  Kids simply shouldn't have to worry about not being able to participate in PE because they're having a bad wrist day, or a bad leg day.  Kids shouldn't have to worry about not being able to walk in the morning.   It makes me angry that things may be going along just fine for a while, and then out of nowhere 'oops!  sorry... time for a major flare'.  Just when I think that we have a good handle on this something happens to make me feel totally ignorant & powerless.  I have read everything that I can on her conditions, I can have very meaningful conversations with her doctors, I can decipher her lab results (thanx to the power of the internet!).  And yet there are days where I panic because I just don't know what to do.  I guess it will be easier maybe when she's older and she takes more of an interest in being proactive?  Right now if she had a fever of 103F and had congestion galore & I asked her how she felt she'd say "I don't know".  That drives me batty!!!  But I guess she's been sick for so much of her life that it's normal.  How messed up is that??? 
And the last thing (aside from the fleeping migraine) He thinks that she has Mixed Connective Tissue Disorder.  I had already guessed that because Raynaud's is an MCTD, and so is Scleroderma, but to hear it put that way feels more disturbing, and I'm not really sure what the long-term implications will be.   So, that's where we're at today.  Things initially hit me hard, but generally after a day or 2 I am ready to tackle anything that may be thrown at me.  I thank God for helping me to handle it all!!!  Not the news that we needed to hear this week.  If you're the praying kind, please keep us in your prayers!  Thank you!

When did Ashley get so grown up???

On the lighter side of things.....  Monday night we headed to our elementary school for the school's tenth birthday party.  We had a great time trying to recruit for Cub Scouts & Brownie's. It was a really nice night.  The weather was perfect, the kids were in a good mood and mostly feeling ok.  They had some artwork on display.  That was pretty cool :)
Last night was one of those nights that I needed to be in 3 places almost at once.  So, Kevin took Emily to therapy for me, and then took Zach to Cub Scouts while I went to the high school for Ashley's Fine Arts Festival.  That was really awesome!  It was so cool to see Ash in her element, with her friends cheering her on and her teachers looking to her to help.  She may not have the best grades but when she enjoys something she puts her all into it.  She was the voice that was the most clear, the only one that you could really pick out during her chorus concert.  You could tell that the other girls looked to her to kind of lead the way.  And she's such a brilliant artist.  Obviously it's easy for me to always see her as my daughter, but last night allowed me an opportunity to see her as a friend, a student, a person.  It was a wonderful night.  And when it was done I let her hang with her friends for a while.  She actually asked me to join them, but I wanted to let her bask in the moment of her night.  I hung out with them for a while, but I wanted her to be able to relax and let loose a bit.  She's such a good teen.  I truly am blessed.
I had a few days where I was pretty cranky.  Understandably so, I imagine, when one is hit with so many things at one time.  There are so many things that I can't control, but I'm ok with that.  I am sure that we are in God's hands, therefore we may struggle, we may fall, but we will get up again.  Whatever happens... I may not be thrilled but I will eventually prevail.  WE will prevail.  I am nothing without my family.  Thank God for them.

PT Eval today

Today was Emily's physical therapy eval for her new therapist.  It didn't really bring any new insights but it does provide the new PT with a plan of action once reviewed.  The curve in Em's back is still mostly absent, there is not much curve to her arches, either.  Her knee range of motion is just sad.  Her ligaments back behind the knee are very, very tight, giving her knee range 50 degrees and 52 degrees when they should be around 90.  If I remember from last time they were around 42, so there has been some improvement.  Her neck is still stiff as well as shoulders, but she isn't quite so tight like she used to be.  The goal will most likely once again be to help her admit when she's in pain, admit when she can't do something, and help her to learn how to manage, cope & do.  Since she's been feeling better I want to try to be more aggressive this time.  I just wish that a PT would have been available before she started to flare.  Her wrist is still very tender today.  The therapist thinks that she probably bruised the bone.  Her knees were pretty puffy, too.  But I see improvement and hope. 

Happy Mother's Day!

A day to be looked forward to, and yet I find myself a wreck today. I've been pondering taking Emily to the hospital all day.  She's not holding the wrist to her, trying to immobilize it, and she can move it, so I'm pretty sure it's not broken.  I'd say 98% sure.  However, it sucks to see her in pain.  And she's been whining about it all day.  I would be too, but it breaks my heart.  At around 2 A.M. when I was winding down to go to bed anyway, we had 2 back-to-back power surges.  The second came as my computer was *almost* back up.  When it tried to restart for the third time it came up with critical errors.  Thank God Kevin was home today, and could fix it better than any over-priced Geek Squad dude any time.  He dedicated the morning to fixing it, and then made us breakfast.  Next, he's taking the kids to Publix because they were *supposed to* decorate cakes after school while in the after school program for Mother's Day.  We paid for each child to do it, sent in permission slips, etc.  Well, (because everything else has gone wrong this week so why not?)  I realized this morning that they did not have those cakes.  Usually I wouldn't worry about being out $12, but God only knows how long Kevin will be out of work, so got a little pi$$ed off about that.  Emily later showed me a note saying they were unable to do them at school but they could go to Publix with the note and get their cakes.  I wouldn't have agreed to do them if I knew we had to go there for whatever reason.Thankfully these are little things that are very trivial.  I know that by the end of the day this will all be very funny.  Off to go try to enjoy the day! 

Aaaarrrrgggghhhh!

Most of the time I am such a positive person.  I truly do try to stop and take a few minutes to smell the flowers or even just the breeze, to enjoy the feel of the breeze, to find as much good as I can to enjoy this roller coaster ride that we call life.  This week, between Kevin losing his job and not having another yet, worrying about the future more than I probably should, Emily being sick on Monday, having her arthritis flare, her throwing up on Thursday, what more could go wrong, right?  Well, I awoke with a migraine that would not go away until about 3PM today, (praise God for giving me enough migraines to know how to work through them now) and tonight Zachary pushed Em and she landed on her wrist.  She can move it now, but we had a good hour where I wondered if she broke it.  Her wrists and hands are the most affected by her arthritis, so yeah, great.  Now a few minutes ago she tells me "Mom, my chest is itchy."  I look, and it looks like she's got a rash.  Seriously?????????  Wth?????   I am very strong.  God has blessed me with very big shoulders, and given me enough stress in the last 3 years to be able to handle almost anything, but come on!  How much in one week?  Right now I really just want to get away for a while, but I can't cuz Kevin left as soon as I got home from work for a little party at his martial arts class.  I'm at my whits end enough to just really want to cry for a bit.  Sadly, I don't think I could, and I don't think it would help much, but the desire is still there.  Not to mention I would love to have a tantrum.  Just a "No, cuz I don't want to " kind of breakdown.  Sadly, I couldn't do that either.  So, I guess I'll just go kill people in my video game in a minute or 2 instead.  I guess that will have to do.  I just had to vent.  This is why I blog.  Like I said... we have crazy stuff happen. 

Just another day

Well, yesterday brought the school calling for us to go pick up Emily at school since she had just thrown up in class.  Hooray.  She thinks that it was bad yogurt, I'm wondering if it was from her sinuses draining.  Of course, I was with a customer at work at the time & I couldn't ask the nurse if it was mucus.  That was the only time she threw up yesterday... today she seemed fine, but now her damn cough is deepening.  She's starting to sound bronchial to me.  Not going to panic... not going to stress...  Things will be resolved. 
Kevin is at his sword fighting class tonight, & since I took a little catnap I feel grumpy.  Like, if I could just have some QUIET TIME I'd be fine.  Nope.  My oldest and youngest are in full babble mode.   Don't get me wrong- I fully appreciate the fact that both talk to us a lot.  I want to know what's going on!  However, there are days when it is simply too much.  Tonight is one of those where almost every word that I've read or typed has been interrupted by one of them babbling.  Off to kill people in my video game.  Peace out!

A lot can happen in a day

Hello, friends.  It has been a crazy week already. 
So, Kevin texted me yesterday as I pulled into the driveway 3 little words.  "Just got fired".  Thank God I knew it was coming, and crazily enough had even prayed for it.  He has been so depressed there, has hated it so much.  I prayed and prayed for his situation to change, and so it has.  Last night we were almost euphoric about it.  Today... not as much.  Worried more than anything, but I have learned to Let Go, Let God.  We'll be ok.

About an hour after he got home I checked my email to find that Emily was accepted into arthritis camp!  That in itself is a blessing.  It's not like she could go to a regular sleep over camp.  She can't give herself injections yet, and I'm not sure that people that don't deal with her conditions daily would know what to do.  Today she asked me if her tongue was white.  I told her yes, it did look white to me;  why?  She said it's cold.  Her tongue!!!  That disturbs me deeply.  That really shook me up.  When I picked her up today she said that her legs were cold and felt the way her hands do before they start turning purple.  Seriously???  Come on.  Why does she have to suffer so much?  Raynaud's in most cases is only supposed to affect the hands and feet, and sometimes nose and ears.  Wth?  Why does all of this crap have to happen to her?  And she's so sweet about it, such a good girl.  She's so adult- like.  She's had a lot happen to mature her.  That's just sad.

And on another happier note, Ashley had asked to re-audition for her talent show, so they said that she could come today.  She got in!  She changed her song, and  apparently that's all she needed.  She has a beautiful opera voice, which is funny for age 15.  Funny mostly because she really appreciates and enjoys opera and classical music.  How awesome is that??? 

And Zachary... he's doing better now, but his psoriasis is really bad on his scalp again.  I used his prescription oil tonight, so hopefully he'll feel better tomorrow.  It's amazing how many scales can be produced in such a short time.  So, that's a fast 24 hour update.  :p  Crazy stuff.  Think I have to crash now.  Ya'll have a great night!

Doctor visit

What a strange day.  I took Emily to visit her pediatrician today.  I was fully expecting the antibiotic routine.  Instead I got kind of a confused look.  Yes, there's still sinus drainage but no infection that can be seen.  I explained that she had labs drawn today, and that I asked the lab techs if we could add the ESR test.  That is Erythrocyte Sediment Rate, and tells of inflammation in the body.  I wish that her rheumatologist would have ordered that as a standing order around her CBC & CMP.  Her pedi started looking at her knees and hands and realized how swollen they are.  I can't tell swelling unless I see something totally different.  For instance, her knuckles will go white when her hand makes a fist and she's very swollen.  Then I can tell.  I had suspected that she was having a harder than normal week, but now here was my proof. Even upping her Enbrel for the last 3 doses hadn't really changed anything.  She is still flaring considerably.  She's not as bad as 2 weeks ago, but she isn't going to be running any marathons or anything.  So, her pedi said that she could call the lab and add the ESR, but she also added the C-Reactive Protein, which is another indicator of inflammation.  Now we wait and see.  I doubt we'll hear anything before her appointment on the 17th, but we'll see.  Peace out for now :)      

Lab work & sinus drainage

Today was Emily's labwork day.  With the meds she's on we have to have her labs drawn every 6 weeks.  It doesn't matter how many times we go... she'll never adjust.  It used to be that she would scream as soon as she saw the building.  It's easier now that we go to the children's specialty center.  Now she doesn't start to flip until they start cleaning the area.  Then she starts to panic, and I feel horrible.  I know it's just simply something that we have to do, but hearing her cry and scream makes me want to run away with her and never go back.  It makes me want to cry with her, at the injustice of her disease.  Especially when she's not feeling well, which would be today.  Her sinuses are still draining, and she just doesn't feel great.  For once she actually told me that she doesn't feel well.  Usually I have to guess, then when I ask her she tells me "I dunno.  How would I know?"  Ummmm, yeah.  I've had to guess with so many things.  Then, from the immune suppressors she doesn't really get fevers.  She and Zachary both had swine flu at about the same time.  She got a little cough on a Friday afternoon.  It didn't seem to be bothering her at all. By Monday, Zachary developed a cough, and then a fever that shot from 104F to 106F in an hour while I was on the phone with his pediatrician and the hospital.  After he tested positive we had her tested.  She was positive.  I had no idea.  No clue at all.  She's just used to feeling miserable, so she handles it in a way that I will always envy.  She just goes, like nothing is wrong.  It always amazes me.  My poor little boy!  He is so sweet, so lovey and funny and smart.  Yet, he'll complain that his leg hurts and start to limp around in a dramatic manner.  He's such a sweetie.  And so handsome!  But it's hard for him.  She gets more attention due to her disease.  We try to balance it between them, but it's hard.  Well, anyway, we will be off to the doctor's soon.  I'm hoping this time that they just go for the Omnicef.  We went from Augmentin to Zithromax last time, a step that seemed backwards and counter-productive at the time.  I know, it's a game of going through the circle of antibiotics so you don't wear one out, and I fully realize that Zithromax is not nearly as powerful as Omnicef, so Omnicef is used as a last resort, but still...  It's hard to be right sometimes.   

How I got into blogging (first posted 8/2009)

I first posted this on my WordPress blog. At the time I had the intentions of keeping my blog anon, so I picked a name that no one would guess, & doesn't really suit me. Well, it suits me, but not the theme. That was a year ago. So much has changed! I've gone back & put in names, but kept it pretty much as it was last August. The original was here: http://findingmyselfthroughwords.wordpress.com/2009/08/02/more-about-me/

For the most part, my life started with my children. Isn't it funny how that works? If you don't have children, I guess it's very hard to understand that, but my life revolves around them. No, I don't mean that I don't have time to have a life, or they hog all my free time. That's a typical response that I've gotten. I mean, I wasn't complete until I had them. They can drive me crazy, they can even make me happy that I'm not capable of murder. They may talk too much. But my heart aches for them when I'm not with them, and when they're so sweet, and cuddly or lovey I feel like my heart is melting from happiness. In truth, I don't really feel like I NEED anything else but God and my children. Not to say that there haven't been dark times...
My oldest child, Ashley, is 14, my middle, Emily, is 7 and my youngest, Zachary, is 6. When my middle child was born all hell broke loose for us. Eventually I ended up in a deep depression. The funny thing about depression is that you may not even realize you're depressed until you come out of it. That's me. I don't know how long it lasted, I don't remember a few years at all. It's sad that I can't really recall my baby as a baby. The few things that I remember are that I couldn't take the 2 babies anywhere without Emily screaming, which would start Zachy crying. Emily cried a LOT. She also didn't sleep. She slept through the night way after he did, and she was the older one. I don't think she slept through until after age 3.
We're still trying to figure out when it started, but somewhere along the line she ended up with arthritis. She has Juvenile Rheumatoid Arthritis. Her disease is crazy. She has crazy symptoms, she has crazy side effects, and crazy associated diseases. Her hands and feet turn purple when she gets cold. She gets cold a lot. She gets crazy rashes. Parts of her body may swell at any time. Once, her feet swelled up so badly that she couldn't walk. There was a spot on her heel, and one on each foot on the ball of the foot. It didn't look like they were on the jointed areas. We were told it was from her Raynaud's, which is what makes her turn purple. As a parent, when your children get the flu or an ear infection you want only to take it away from them. Try this: your child can't move her fingers and her elbow, she can't get out of bed, she can't walk without limping, and she can't hold a pencil. Think about her crying because she so wants to play... but she can't. She's in too much pain. Imagine your child in so much pain that it changes her whole personality. Imagine your child being diagnosed as mildly autistic only to find that her whole being is a result of pain. She was scared of everything, didn't want to be touched, and she would flip out over the smallest things. Since she's been on Enbrel she's gotten much, much better. When she started on medicine after her official diagnosis we had to get to know her all over again. We had a really hard first few months trying to figure her out when she was a different child every week. I think that God made Enbrel. Enbrel is a miracle. And God gave us magnet therapy. I don't care how many people claim it doesn't work. I have a 7 yr old that swears by them.
We have so many medical events that just happen that I have stopped making plans. Whenever I make a plan something goes terribly wrong. Zachary breaks an arm, Em's feet swell up, the kids get swine flu, etc... People often don't understand. I praise God, and feel so blessed that arthritis isn't leukemia, that my kids aren't fighting for their lives or terminal. Yeah, we have a LOT go wrong. But we have a lot of blessings! We are together! Our home boasts a Mommy and a Daddy! And we get along! We even like each other! No, we don't have it easy. Does anyone? I doubt it. I can't say that I love my life, but I'm happy. I get up, get the kids up, go to work, come home to make dinner and clean up, and get ready for bed. We don't go anywhere, we can't afford anything anymore with all of the medical bills. Hell, we can't afford our bills! But it's ok. I have God to guide me, and I have a lot of love. Which is where this blog comes in. There are days where I am discouraged. It's hard not to be when things keep going wrong, but I don't like to complain. Now I don't have to! I can just write it, and I'll feel better. There are days when I'm on top of the world, where maybe I come to a conclusion or two that I don't think other people will understand. Now I have an outlet. See the trend? It's a beautiful thing :)

What is JRA?

When my daughter Emily was first diagnosed with JRA at age 6 we were devastated. Thanks to her pediatrician starting off by saying "Well, it's not leukemia" we were more prepared than some, but still bewildered. Where to begin? I did a ton of research from that point, but still felt quite alone at many points after diagnosis. I didn't really know where to turn. What might her future hold? I wanted to hear other people's stories, but where to begin? I've had two years to read, listen, analyze and contemplate now, and it occurred to me that maybe I should share our stories. Our story could help another family!

There were signs and symptoms early on, like large red hive-like spots on her knees that would come and go. From around 18 months on she cried almost all of the time, and if she hurt herself just the slightest little bit she would carry on like it was the end of the world. As a toddler she had chronic constipation... like the kind that had her screaming when she had to go potty, and clogged up the toilets once finally out. (No tummy problems have currently been diagnosed but she does still have tummy issues. I'm not sure if they're related or not.) She started to develop numerous anxieties and phobias. In 2007 Emily developed pnemonia. And a bad limp. In a race with her great-grandmother Emily probably would have lost. She started to develop the ganglion cysts, or rheumatoid nodules. Of course, we had no idea what they were at the time. Her pediatrician ordered x-rays of the first one, and they came back clear. By week's end she had a new one next to the first, and then 2 on her other hand. They started popping up on all of her joints. She could barely hold a pencil. When she started school her kindergarten teacher used to carry her around to her specials and lunch. She started making accomodations for Emily early on. (Mrs. Pacimeo was the best kindergarten teacher EVER.) It took many more x-rays, lab draws and months of patience waiting to get in to see the rheumatologist. It was a long wait. (There is a shortage of pediatric rheumatologists. Some STATES don't even have one.) Of course Dr. Nickeson knew right away that she affected all over, and that she just wasn't happy. He prescribed Naproxen, an NSAID, to control inflammation. She was on Naproxen only for about 6 weeks when he decided to add more meds, and start her on Methotrexate. We were terrified to find that this med was also a chemo medicine and an immune suppressor. Even more terrifying was the prospect of injecting this sweet, pain riddled little baby of ours once a week. The first few injections were horrible, having to hold her down while she screamed and cried like we were trying to kill her, with me crying right with her. I cannot describe how awful that was. It was just heart-wrenching. After about a month she realized that she was starting to feel better. From that point on she still had a hard time with her shots, but she tried very hard to be brave. By September of 2008 it was decided that the MTX wasn't helping enough. Dr. N decided that it was time to try a more aggressive medicine. One of the newer biologics, Enbrel was his choice for her. This, too, was terrifying even though I had been hoping that he would suggest the Enbrel because we thought that the MTX had stopped making progress. Besides that, her liver enzymes and white cell counts were going up and down, and we had to back down the dose. There was a whole year period that we had to stop the MTX. We could no longer use the Naproxen anymore due to blood in her stool. Naproxen also gave her this rash that morphed around. It would last about 3 weeks per round, starting as a pink patch and eventually turning purple and very painful. The patches would pop up anywhere, and looked like we were beating her, I'm sure. We were really looking forward to Enbrel. Enbrel began as not just a medicine but a process. The pharmacy had to be special, I couldn't just send them the scrip... it had to be done by the doctor's office. We had to get a TB test, spend hours on the phone setting everything up, and finally getting the medicine. Thank God for Norma, Dr. N's teaching nurse who had taught us all about Enbrel and how to set it up, because the medicine had to be set up using a complicated process, and then it can not be shaken! Also, we went from one shot per week to 2 injections of Enbrel per week. Everything about it was scary. But ya know what? I am truly convinced that Enbrel was an answer to our prayers. It has been our miracle. It doesn't work for everyone, but for us this medicine has transformed our child from a sad mess to a happy, active girl. No, she isn't perfect, and it isn't just going to go away. But now she can tackle her brother, and run and play. She will still flare, as we recently found out. Since Enbrel is also an immune suppressor she gets sick more often than other kids. She's more prone to skin infections from cuts, and due to tight skin. Yes, there are other issues. Her physical therapist noted that she has no curve to her back. She surmised that Em tried to change the way that she walked to compensate for the pain, and that over time made the curve disappear. Her feet are losing their arches as well.

Emily's had all sorts of labwork run on her. One thing that we learned right away was that she is positive for the Rheumatoid Factor in her bloodstream. Most children are not. Her disease is closer to the adult form with that factor. Her doctor had decided at one point that she had scleroderma. We ran the tests with me expecting them to be positive. I had many reasons for that. Her ANA (auto nuclear antibody) came back high-titer positive speckled. That is a marker. The pattern that an ANA forms is different for different diseases. The lab takes the pattern and dilutes it. The more times it is diluted with the pattern still showing tells the titer. The speckled is related to scleroderma, but none of the other tests pointed towards that. This gave us enough to worry about, as usually kids that are pauci (less than 5 joints involved) usually have the +ANA, which also shows that they are more at risk for various arthritis of the eye. Emily is poly (more than 5 joints involved) but now still more at risk for the eye issues due to the ANA. After Dr. N said that it didn't really point to scleroderma I was shocked but very relieved. One of the main symptoms of scleroderma is Raynaud's Phenomenon. Raynaud's is actually also arthritis related ( http://www.arthritis.org/disease-center.php?disease_id=22 ) but is more often associated with scleroderma. Emily definitely has Raynaud's. I have had phone calls home from the school like this: "Mrs. Tipton, we have Emily down here at the nurse's office. Um, we're not really sure what to do. Um, she's purple. Both of her hands are just purple. Do you have any idea what to do?" This is our world. This is our reality. I went to pick her up one day just a couple of weeks ago, on a warm April day. Both hands purple. She came home over the January winter break with mild frostbite. She didn't go outside to play that day. They kept her inside with her mittens and heavy winter jacket. She wears 2 undershirts when it's chilly out to keep the core warm. She keeps mittens with her even in the summer because often just having the air conditioning on will trigger it. At this point my biggest fear and worry is the Raynaud's. I'm terrified that one day she will come home with severe frostbite. People with Raynaud's are at risk for losing their fingers and toes. All this said, I was shocked when he said she didn't have scleroderma. What did I learn from this? Just because something is ruled out doesn't mean it will stay that way. He eventually decided that labs be damned, she does have scleroderma. Not the systemic form like I worried so much about, but she has the skin tightening form. Her fingers, affected enough already from the JRA and Raynaud's, often look like little sausages from the scleroderma. Her hands are greatly affected by it. It does affect her arms... it seems to come and go there to me, but I don't really know enough about how to tell to judge well. Her feet are affected. I have come to realize that she cannot wear shoes without socks. I don't care what kind of shoes she wears... she has to have something between the shoes and her feet. Otherwise she gets sores along the sides of her feet. The sores have led to an infection that required 20 days of topical and oral antibiotics. And that was despite our using Neosporin on it as soon as it started to inflame. I thought it was MRSA.

We have learned so many things through our journey so far. We have learned to trust God more. We thought before diagnosis that Emily was unstable, couldn't handle much. That child is my hero. She feels crappy every day, so much so that when she's sick she can't tell me for sure because she's used to it. She handles pain like I can't even believe, and trudges on when most of the rest of us would have quit. She's so smart, and so sweet. She can tell you what meds she's on. Kids are resiliant in ways that I hope most people don't have to see. We have learned that no matter how bad it seems, there are worse cases out there. We have learned that nothing is for sure. Just because a diagnosis is ruled out doesn't mean it will stay that way. Expect nothing and anything. You have to find a way to accept what you cannot change, but you can still keep fighting! You have to find a way to let go and let your kids have a life... even if they are worried about getting hurt. And just because you have a disease doesn't mean it should define you and run your life. My goal is to help other people going through what we have. Being alone sucks, and having no one to turn to does to. Please, if you need a shoulder, an ear, advice, whatever, please know that I am here.