So angry!!!

When Kevin pointed out the Emily felt warm on Sunday night I was surprised.  Because Enbrel & Methotrexate both mask fevers, I had gotten used to her not having them.  Since Orencia does basically the same job as Enbrel but in a different way I wondered if it, too, would mask fevers.  I know now that it does not.  Because she was flaring so badly- by then completely couch-bound, getting up only to use the restroom- I kind of hoped that maybe it was just from the flare.  She doesn't seem sick, but then again, she never does.  So, instead of rushing her to the children's hospital last night after the forehead probe flashed 104.4F at me, I decided to wait until today to figure out what to do.  It responded to Motrin and was back down fairly quickly, and she seemed very stable.  I figured there was no point in waking up our rheumy when they would just be using her as a pin cushion, anyway. 

As soon as we got up today I called her pediatrician.  Their computer system was down, but when I explained what was wrong, the med assistant says "I can't even see what's on the schedule so can you come in now?"  Sure!  My thought was to rule out infection so her rheumy couldn't blow us off, and also to get our pedi to call him since he won't return anyone else's phone calls. I got the newer, more conservative doctor.  She is still learning, but she's okay.  She's one that only likes to prescribe oral steroids yearly or upon dying.  I can understand that.  They are harsh, can cause brittle bones, can mess up internal organs, make a child gain a ton of weight.  Even she agreed that she would give steroids to my bean.  She said that she couldn't see any infection, though it was possible that there was something viral.  She had a viral infection the week before we met the Congressman, which was Sept. 13.  Anyway, she called our rheumy and he actually talked to her!!!  I was shocked.  He wouldn't even call back the nurses on the same floor as his practice last week, and we were there for 2 hours.  Anyway, he wanted to see her, so we made a 1PM appointment.  Somewhere something got lost in the translation because somehow I was under the impression that we were going to the Infusion Room.  That would mean IV Solumedrol, which would be a wonderful choice at controlling the inflammation.

I should have known better.  He did a thorough exam and could definitely see the inflammation, but decided that she probably had strep that just couldn't be seen yet.  The new nurse practitioner (who was an infectious disease nurse) asked me what lab we use, but then he popped up with "I want her to see her pedi on Wednesday for a throat culture to check for strep."  Okay.  Hmmm.  It gets better.  During her exam he noted that her eyelids were really pink.  He also noted a spot that she's had on her elbow that I always think is an RA nodule.  It has gotten bigger.  Those 2 combined with different areas that were causing her pain, and then looking at her labs he determined that she most likely has Juvenile Dermatomyositis.  (Why not, right?)  I had heard of it, but I hadn't read up on it before because it didn't apply.  Now that I've read up it makes sense.  I had been wondering if there was a muscle issue going on because often she would point to non-joint areas and say they hurt.  The symptoms?  Weak muscles, fatigue/ lack of endurance, stomach issues, weak voice... a whole list that just makes sense.  I'm not sure what it was in her labs since by this time my head was spinning, but at some point he & the NP decided that there was *something* in her labs "that's not good".  Judging by the context I assume it was myositis related, but I'm not 100% for sure.  They also said that this can be why her white cells keep crashing.  They are still too low to go back on her MTX.  And finally, they mentioned an MRI, but I don't remember if it was the elbow, the knees (where she has flexion contractures) or where.

So, after he left the room I realized that we hadn't settled on anything to help her MOVE.  We called him back & I asked him about a round of steroids.  I don't want to give my baby narcotics, though I do have a bottle of Tylenol with Codeine in it from Zach's arm break.  I would rather give her something that will control the inflammation.  Nope.  "I really think it's from the strep, and after she's on antibiotics she'll feel better."  Okay, I had pointed out before that after 9 days her Orencia vanished from her system and left her like this, and since this dosage was half the first it would make sense that it would wear that much more quickly.  He was totally focused on strep.  I was ticked off that nothing would be done for the pain, but what could I do, right?  Sometimes it takes me a while to get really angry.

So, I get home & start reading different things, talking to people.  I have a friend that was telling me how when her son with JA got strep, it was in his eyes, & it can cause full-blown inflammation.  Her rheumy & pedi worked together to treat it, using a month long course of alternating antibiotics, IV & oral steroids.  My jaw probably dropped when I read that, thinking wow, we got brushed off.  But then I read this: http://www.curejm.com/info/jm.htm , which is info on the myositis.  I about lost it when I got to the treatment section.  "
What is the treatment for JM?
There is no cure for JM yet, but there are treatment options to help manage the symptoms. Early and aggressive treatment is usually the best predictor of a better outcome of this disease.

IV corticosteroids (Solumedrol) are usually the first line of treatment for JM. This is oftentimes coupled with high dose oral Prednisone, another corticosteroid. Since the side effects of corticosteroids can be very troublesome, Methotrexate (a chemotherapy drug when given in higher doses) is usually introduced early to allow for tapering of the corticosteroids.

Other common treatments include Cyclosporine and Intravenous Immunoglobulin (IVIG). Less common treatments, but still used include Cellcept (chemotherapy), Enbrel and Remicade.

These medications all have their own side effects, but the most common ones for Prednisone are: -increased appetite and weight gain -rounded face -mood changes -high blood pressure -stretch marks -fragile bones and bone damage -cataracts -slow growth." 

Can you feel the anger?  Really?  So, despite really not looking forward to the drive, I am finally angry enough to have decided to try a rheumy 3 hours away.  Why?  They are the next closest ones.  Pediatric rheumy's are a rare breed!  One doesn't have many choices!  Maybe then we will have proper treatment, we will not be brushed off, we will have phone calls returned when you tell them your child cannot get out of bed, and her issues will actually be addressed.  I really didn't want to switch.  As a person, I really like her doc.  I absolutely adore the nurses!  They are so sweet, such good people.  You can tell they really care, and they are genuine.  All 3 of them.  But I can't let her live like this, either.  She has:  RF+ (adult type) Juvenile Rheumatoid Arthritis, Scleroderma (linear- skin only, they say), Raynaud's Phenomenon, Myositis, & Mixed Connective Tissue Disease.  The only thing being treated atm is the arthritis... kind of.  I pushed for calcium channel blockers for the Raynaud's so she wouldn't get frostbite in school again and was denied.  There are other meds aside from MTX that can be used for Scleroderma, but not for us.  And now it's just deal with the pain???

My head is still spinning.  It's been a long day with a lot to absorb, and I'm still angry, but I have to be up soon.  I think I'm too angry to sleep, but I guess I'll have to try. 

And the roller coaster rolls on

Well, once I found out that the Orencia dosage was cut in half for her second infusion, I wondered what was going to happen.  I doubted that she would feel as well the second day, and I doubted that she would feel as well for as long.  Instead, the day after she did fabulously after the morning, but now that we're on day 5 she's reverting.  It actually started last night.  She told me that her back was hurting, then it was fine, then it started again.  She kept telling me that this hurt, or that hurt, but it was mostly just quick pains that went away in a few minutes.  I hoped for the best, but suspected the flare was coming because I also noticed what look like new nodules popping up on her hands.

Today after I got home from work I found that she wasn't doing so well. Not only does her back hurt pretty badly but now her neck hurts, her shoulders, her arm, both legs and a finger.  That's all that she has admitted to, anyway.  A little before it was time for her next round of Motrin we kept hearing little moans coming from her.  She's trying not to get up from the couch at all unless she has to.  Because that alone apparently isn't bad enough, her Raynaud's is acting up again even inside of our house.  Usually she doesn't have too many episodes at home.  I had to grab her blankie, & her housecoat and Kevin grabbed her mittens for her.  She stayed bundled up for quite some time.  It's so frustrating to see her good for a few days, then very bad for a few.  I knew to expect it, but still...  Once it fully kicks in in another couple of months it should be worth every minute, but right now it's just very hard for her to deal with and for us to watch.  We may have to keep her out of school this week.  We shall see.  One day at a time.  We'll just have to see what Monday brings.

Second infusion

I don't think that I'll ever get used to this roller coaster.  Emily just rolls along most of the time seeming pretty much unfazed, but I'm all over the place.  I try really hard to just expect things to happen, so I don't get as upset as I could, but try as I might I can't predict the way that I'd like to, and I don't always think of the right questions.

After the first full week on Orencia being an AMAZING change for her, by about day 9 the effects started wearing off.  Gradually, but bad enough.  At first it was in her back.  I had read that back pain was a side effect, and she accepted that.  She had 2 days of only back pain when her arm and leg started hurting.  Her leg was bad enough that she didn't want to walk.  Thank God it waited until the weekend to get bad.  By Monday she was ready for her infusion.  She didn't argue, fuss or cry this time, which was a relief.  This time she knew what to expect, and she knew that it worked.  She was pretty happy watching "Hotel For Dogs" while her medicine coursed through her.  She also distracted herself by making a bracelet in the hospital.  I had asked the nurses about more meds for her pain.  They called her rheumy, but of course, we didn't get a call back.  They are always so busy.  At that point I had figured that it could wait.  I suspected that by the next day she would be running around again, and she was!  I had really worried because I found out Monday that the elevator at her school had broken down again.  She's on the second floor, and there would be no way she could get up & downstairs if she was still hurting as badly as she did on Monday.  She had help getting up on Tuesday morning, but apparently sometime Tuesday afternoon the Orencia kicked in!  She came back home running!  She also very happily told me that she didn't need her gloves on Tuesday! 

My best guess is that until it fully kicks in she will have several days before the next dose that are just plain bad.  I panicked when I found out that this bag only held 250mg compared to the first dose of 500mg, but she's doing very well.  We are breathing sighs of relief for sure.  I have faith that this is the right medicine for her.  I feel that once it is working at max she will feel really good again, in a way that we haven't seen her since March or April.  I can't wait for that.  These children are so amazing, so special.  And so smart!  She told her teacher that her back hurt, but don't worry- it's only a side effect and it will go away.  It's the things that I don't think she's listening to that she'll repeat.  In any case, I'm just happy that we're in a good stretch, and hoping that the bad stretch will only be a day or two.  If this helps for the Raynaud's also, I will be thrilled.  That would mean that she wouldn't need calcium channel blockers or any other meds for that.  The less medication the better. 

She's getting very excited for the fall!  This is her favorite time of year!  It's been an interesting school year so far.  We've had a lot going on.  We've gotten more involved in Cub Scouts.  Last year I could take it kind of easy since it was only 2 boys for quite some time, and then just mine after the other one moved away.  We currently have 6 boys!  I've been busy the last 2 nights planning for the next couple of meetings, and getting things printed out to keep track of achievements.  Emily has been enjoying her Brownie nights.  Thank God for Michelle!!!  I have so much to use for Cub Scouts, but Brownie's had me pretty lost.  Michelle is a teacher and all of this has been pretty easy for her to figure out.  I went from going it alone to having her take over the part that I felt incompetent at.  Any which way, that has kept us busy.  I'm trying to be on the kids more with homework.  Ashley is actually trying to achieve Honor Roll status!!!!!  She wants to be an honor student.  Works for me!  We've gotten Emily to chill out a bit with her math anxiety and frustration, and I was actually able to teach her something.  We have to keep on Zachary.  He'll try hard to get out of doing his homework.

And in the middle of all of that, we lost two people in our division last week at work.  The first man I didn't know.  I believe I've met him once or twice, but that's about it.  Through no fault of his own, he was killed in a horrific accident with his store's work truck while on the clock.  So many people were affected by his passing, including several people from my store.  It was very shocking and very sad.  As if that wasn't bad enough, a driver from the store just a few minutes away from me passed two days later.  He had a stroke and then a blood clot in the brain.  That, too, was shocking and unexpected.  What a horribly sad week.  We all knew him, and loved him.  I can't say that I knew him well or that we were close, but he was a good man and he will be missed.   Our division is like a family in many ways.  When one hurts, the rest hurt for it and with it.  Just to rub salt in the wound, the A/C system at my store went out.  It's been like 90F in there all week.    It was a very trying, emotional, up & down week.  We have many things to look forward to this week!  Just having my little girl walking again is enough to make my week.  I hate the uncertainty of RA.  You just don't have any idea how any given day will be.  Every day is a gift, however!  I will try to have her looking for the positive things in a day like I try to do.  We all complain so much, myself included.  We have so much in this life.  We take so much for granted.  But truly, every day is a gift. 

Week one of Orencia

Well, it's been one whole week of Orencia as of tomorrow afternoon.  My guess is that Emily is very sensitive to medications... in a good way!  Again, after speaking to the Orencia reps, other people with experience with it, and doing research online I was not expecting to see any results for quite some time.  At first I thought maybe it was just a coincidence until I remembered that she was off of her Enbrel a full eleven days before her first dose.  Every day she has felt a little better.  Yesterday she excitedly told us that her knees were popping.  Today they continue to pop.  That is a relief for her.  Also, she is showing me how she can do things now that she couldn't do even nine days ago before we started it.  She says that she can straighten her knees better now! I am so relieved!!!  She also said that there is no pain in her wrists, as she excitedly maneuvered them around in different positions.  That is huge because that has always been a big source of pain for her.  When she went to camp over the summer, the doctor that examined her there played with her wrist first in her exam, and right away told me that she was not under good control.  That was back in June, so all of this time she's been hurting.  What an amazing little girl we have!!!  I'm sure that most adults would have whined and complained the whole summer.  She just politely asks for baths. 

Also, although I can't find any link to it, her Raynaud's seems to have toned down a bit, too!  When we were at the Open House for our school on Tuesday (the first full day after Orencia!) her teacher said that they had noticed the difference.  She hasn't come home with an opened hand warmer in the last week, either.  She told me earlier that it's in her toes a little bit, but she hasn't needed mittens since being on it, either!  I hope that will come under control.  It is so sad that our little princess can't wear dresses, or even shorts in 95F degree weather.  It's sad that she can't swim unless the water is like bath water or she'll hurt all over and the blood stops flowing.  I've finally found a personal story on Raynaud's, and the man writing it said that when his hands go white it is worse than anything he ever experienced in all of his years in the military and in his years as a police officer.  My girl has these episodes several times a day.  She has never complained.  For anyone that is interested, I went to http://www.raynauds.org/ , clicked on the Cold Cuts newsletter, and read the featured story.  I love to read personal stories because it helps me to understand her better.

Also, please let me know if there is a great pair of gloves out there for children that are very warm, but could also be thin enough to hold a pencil like with regular mittens.  I am trying to prepare for winter for her.  I suspect that it's going to be like last winter- very cold for Florida.  Having lived down here since December of 1991 I know NOTHING about winter gloves!!!  I suspect that whatever we decide on, we'll have to order online.  Thank you in advance for any input that you may have!!!

Another mystery solved

 Have you ever just completely overlooked the obvious?  For a while now I've been trying to figure out what is causing Emily's "itchies".  She will tell me sometimes that she's unbearably itchy, and even the bath doesn't help.  So, I started researching.  Looking at other autoimmune disease, especially those in the rheumatic spectrum.  I went to Medical Prescribing Reference, a site for doctors that tells all about each meds.  I wanted to see what else Methotrexate was used for.  She begged our rheumy the last time that we were there to let her go back on her Methotrexate injections.  She's probably the only child in the world begging for a shot!  However, she knew that it helped as the itchies would come back when she stopped it.    Thanks to a friend posting a link to another friend, I get it now.  I have known for a while that Emily has scleroderma.  I have focused greatly on her arthritis, and often I have focused on the Raynaud's, like when her tongue started turning white.  However, I haven't worried too much about the scleroderma, except when it comes to her hands.  Even then, aside from the MTX there isn't much we can do about it.  Since she doesn't have the systemic forms, I pushed it aside.  And then I saw these videos.  I do believe I have much more to research now.  I have researched it in the past, but it was more before she was actually diagnosed.  We had a few months of uncertainty while we waited for lab results.  (They turned out negative, by the way.  It wasn't until a year later that he decided, labs be damned, her hands definitely have scleroderma.)  Scleroderma patients are much more likely to have Raynaud's than arthritis patients.  Raynaud's as a secondary disease is actually worse and has more side effects than when it's a primary disease.  Nothing about this child is easy when it comes to her medical health.

On the brighter side, her pediatrician (whom I love dearly) finally decided that I had a good idea every year when I ask for asthma preventatives before my kids get sick.  She & my son both get sooooooo sick this time of year.  Last year we were in there almost every week from September to March.  Maybe this year we'll be better off with the preventatives in play.  She put them both on Singulair, Xyzal (similar to Zyrtec) Qvar, (like Advair, an inhaled steriod) and nasal spray.  There's never a dull moment!  Since they've been back in school they've already had that throat thing that's going around and my son had a stomach virus.  They've only been in school since mid-August! 

Well, it's game night with the hubby & some friends  :)  If you have about ten minutes to learn, please follow the link at the bottom here.  Please have a box of tissues at the ready.    I needed them. 

http://www.nytimes.com/interactive/2010/07/28/health/healthguide/TE_SCLERODERMA.html

So far, so good

I think it was in May when Em's rheumy had said "Maybe the Enbrel isn't doing all that it should be.  Let's max the dose and see what happens, but since that probably won't work, why don't you consider Orencia."  So, I did.  I talked to people.  I talked to Orencia reps at the JA Conference, I asked other people, I researched and read up.  That said, I fully expected this to take 3-4 months to kick in, at least.   I panicked a bit.  Knowing how bad her Raynaud's is in the summer, I was terrified to think of how it may be in the winter with a med that wasn't working well, or working yet.  Somehow, (she says with lots of prayers and fingers crossed) it seems that the Orencia is already working.  Emily came home yesterday RUNNING and telling me, "Mom!  Guess what?  The Orencia is actually working!"   I know that it could be a fluke, I know that it may not last;  I'm not getting my hopes up, BUT she didn't ask for a bath yesterday or today, and that's her biggest coping-mechanism right there.  On a bad day, if she could I think she'd spend all day in the bath.  It is huge to me that she's feeling this good!  Her endurance is still horrid, but we're working on that.  I'm just so relieved.  She was so angry at me for agreeing to an IV med.  She was so terrified.  I tried to explain to her that sometimes the right decision is the hardest to make, that I was certain this was the best choice that we could make right now.  It's wonderful when she sees that I'm right, that I am not making her be a pin cushion for no reason.  Kids this young should not have these issues!!!!!  Now I just need to find her a therapist.  As I've been saying a lot on here lately, she just shuts down.  When we started talking about Orencia in the doctor's office, on the tour of the Infusion Room, when we actually went for her infusion, and in math class a few times she's shut down.  I'm talking run away, hide in a corner, won't look at you, won't talk, won't listen, chewing on her fist type of shutting down.  I'm sure it's probably mostly arthritis-related anxiety.

I have to explain something before I get into how I feel about this.  I'm a Christian in the "it's God's job to judge, and my job to love" sort of way.  If you want to be Bhuddist, that's your choice.  I may not agree with your choice, but I don't think it makes you a bad person.  I may feel sad about that, but I'm not going to tell you.  I don't believe that shouting in your face will help, either.  I try to lead by example.  I'm not always the best example, but I try.  We're all messed up & broken.  I accept that, and I'm glad that I'm not the only one!  : )  Before Em's diagnosis we all made a lot of mistakes.  Looking back, I can't believe how depressed I was.  I can't believe that I got through it with only God as my counselor!  No therapy, no meds- just church and changing my outlook.  It took some time, of course.  But, I look back to 2007- 2008 when EVERYTHING was going wrong.  That's the time period where first Kevin got pnemonia, then the little people got it.  Kevin was out of work for 2 months.  I didn't even know Em was sick- she had a really shallow, dry cough but that was it.  I took Zach in to the pedi for his cough, but I had Em seen because they always got sick in pairs.  Well, the pnemonia congestion hung out in her sinus cavities leaving her a shallow cough for months. Then the nodules started popping up.  The limp started then, too, making her slower than anyone that I knew.  We had x-rays on her hands, & her hips to her feet.  All were clear.  Her liver enzymes her elevated for months, her white count all screwy, her kidney enzymes were messed up, too.  She failed a hearing test, and was also diagnosed with a mild form of autism called Pervasive Development Disorder.  She had her adenoids removed, and then she was diagnosed with JRA.  Since she had tested RF+ at her pedi's we knew pretty much that it was JRA months before she finally saw her rheumy.  Not to mention the color draining out of her hands & feet and then turning purple.  That was a highlight.  In the middle of all that we had found mold in the wall that connects the kitchen & bathroom so we yanked those out and remodeled both rooms- with only each other & Kevin's cousin Chris.  (Thank GOD for Chris!!!  We'd still be working on it.)

I look back at the stress, how I felt like I was losing it, how I yelled a lot and got sarchastic a lot.  (Ok, I'm still sarchastic.  But only because it's fun!)  Her journey has changed us all for the better.  Back then if someone told me that I would be doing all that I am now I would have laughed in their face.  I cannot believe the person that arthritis & God are making me!  Never did I think that I would be discussing legislation with my congressman in my free time.  Or helping people through what we went through, and are still going through.  It's really cool the ways in which we're used.  It makes me happy to be able to give people hope, there's good stuff down the road- just wait for it!  Yes, I still cry for my girl.  It is so wrong that our kids have to deal with these issues- most likely for life.  I cry for her on her bad days, and when she's her bravest.  We talk a lot about how bravery doesn't mean you're not scared.  But I love them harder.  I am blessed enough to be able to prove to my kids often that I will fight to the ends of the Earth for them, to teach them how to advocate for themselves.  We show them daily that we want to be part of their lives, and we treat them with respect.  They are, after all, people.  They deserve it.  Yeah, every once in a while I still have to raise my voice.  But most of the time it isn't necessary.  It plain sucks that she has to have something like JA, but when it comes with so many blessings, at least there's hope.  I know I have some weird issues... I hate leaving my house, except to go to work.  Even when I'm excited about going somewhere, when the time comes to leave... I often just can't do it.  I find myself rationalizing it, but there really isn't a rational reason.  Anyway, I'm rambling tonight.  I apologize.  I still have this darn cold/throat thing.  I shall return! 

The congressman & Orencia

What a day!  We met Congressman Bilirakis today.  He was actually very "real" and down-to-Earth.  That made me feel better about the meeting.  He and his aide were very sweet, very welcoming.  It was his idea to take pictures and he gave the little people coins that he had made.  They had his name stamped on them.  Pretty cool, really.  He had no idea that kids got arthritis, too.  I showed him a map that we had gotten from the JA Conference that shows the shortage of pediatric rheumatologists.  I told him about the CARRA research group and the registry that they are creating.  We discussed Emily's IV later in the day, and some of the medication options, as well as how few there are.  It was a good visit.  He said that he hasn't read the bill yet so he couldn't guarantee that it would pass or that he would support it, but he said that he's all about helping the children and he would read it today.  He also has a friend that knows a lot about it that he was planning on speaking to.  I know that he may still vote against it, but I feel that we may have an ally.  He encouraged us to come back.

We had Emily's infusion scheduled for 1 PM.  After visiting the congressman we dropped Zachary off at school, then went home for a quick lunch.  By just shy of noon we were back out the door.  We got to All Children's Hospital early and had a nice wait while they processed everything.  Em was fine in the waiting room.  The moment that she saw Leslie, the nurse that gave her the infusion bear, she freaked out.  I hate when she gets like this.  I can understand her fear but at times it's hard to deal with.  She refused to get on the scale... ran & hid.  It's a SCALE!  Not a big monster.  I know... it's a stall tactic.  I'm trying to get through to her that even when you're scared you have to consider how your actions impact others and yourself.   She wouldn't get weighed, wouldn't put the hospital band on, wouldn't let them get her temp or blood pressure.  I can understand completely freaking over the needle, but when she's making it so hard on such nice nurses it makes me  a bit upset.  They are AMAZING there.  They had Child Life come up to help calm her down and talk her through it.   That was truly a gift.  Kevin & I were both feeling stressed out, but they came with toys and compassion.  They gave her lots of different choices, though not too many at one time.  They talked, played, helped her through it.  The poor kid was just a wreck.  I know that after her first two or three doses she'll be like an old pro, but today was just dreadful.  She kept trying to jerk as they were trying to get the needle in her.  What pros they are!  The team there really made things so much easier. 

After the needle was in she calmed down.  They had given her blow pens, so she busied herself using the blow pens on the dolls that they gave her to color.  She also watched TV on their state-of-the-art TV's.  They have regular TV, a selection of movies on demand, and even internet access on the TV's.   They make sure that the kids have plenty to do.   Thank God because we have 2 more infusions this month, then after that we will be going once a month.

It was wonderful to get home!!!  I couldn't wait to get home.  I also had the opportunity to speak to a mom of a child that was newly diagnosed tonight.  It's always nice to do that.  It's great to compare notes, but it's better to know that you are not alone.  So few people truly understand what we're going through.  People seriously underestimate arthritis;  it just doesn't get the credit that it deserves, partially because it's invisible.  Sad as that may be, it is true.  People don't see that your child can't get out of bed in the mornings, or needs several baths a day because she's so stiff it's the only way that she can move.  People don't see that she feels so bad so much of the time that she can't tell when she's sick.  They can't see the days that she can't straighten out her leg, or get dressed by herself.  They aren't the ones whose hearts are breaking as they watch their brave little people that have never done anything to hurt anyone, and yet they hurt probably more than you ever have.  She told me the other day that she's already an old lady.  I had to laugh because of the way that she said it, but you cry a little inside because you know that it's true, and it's not fair.  And yet, it could be worse.  We count our blessings, take one day at a time, try not to panic at each crisis.  We focus on the positive, and find our strength through God.  What more can we do?