Tuesday, February 22, 2011

What a crazy week!!!

Well, probably 2 weeks is more accurate.  Has it been that long?  I guess so!

I shall start with getting Emily's chair.  You know that things are rough when you're excited about getting your child a new wheelchair.  However, this opens us up to be able to do several things that we haven't been able to do.  Things like, go for a long walk in the woods.  The new chair can handle that!  Go to a fair or other place that would have us walking around a lot.  Granted, we had a chair before, but for one it was "an old people's chair".  She never complained, she just didn't feel comfortable.  Also, there was no restraint.  She felt like she was going to fall out.  So this was very exciting!  We are hoping to be able to go to the Renaissance Fair when it comes to town.  We will definitely need a good chair for that.  (If we wait until March 20th we can renew our wedding vows- just in time for our 15th anniversary on April 5th!)

Kevin had the appointment made for him to go in for his radiation, only to be told that the doctor that made it didn't know the whole situation, and his thryoid counts weren't low enough.  Our doc canceled the appointment, telling him to get more labs done on Wednesday.  Of course, being without meds while they wait for levels is making him feel like the human slug- sluggish, swollen, forgetful, cranky and sore.  Not too much fun.  He's holding up well, but only because there isn't really much of a choice.  He forgot to do labs on Wednesday, and by Thursday we had a sick boy.  DangerBoy stayed home from school Thursday & Friday both, so Kevin didn't go to the lab until Friday.  (By that point our boy felt a little better and wouldn't be contagious.)  We're hoping that they will call tomorrow to schedule him.  We shall see!

My father went in for the angioplasty to find that it wasn't a stent that he needed.  I was very concerned because so many other things around this time seemed to be falling apart for other people.  It almost seemed taboo.  It turned out that, in his words, there was a kink in the artery.  ?????  I don't get it, but that's what he said.  I've asked him to find out the medical terminology so that I can research it.  The good news is that he's fine!  My mother had taken the info to give me at first, but she messed it all up out of nerves.  She told me there was a 40% blockage but they weren't going to do anything about it, and that he had to stay overnight because they had given him something and had to watch him.  Yeah, they gave him a hole in his groin and a six inch metal wand to go inside of the hole!  It was a very confusing, stressful day.  By the grace of God, he's home and doing great now!

Next came the letter from Make-A-Wish foundation!  They sent a parent packet so that you know what to expect, what we will need to have, and so on.  We still had some questions, but we figured we would wait until they called to ask.

I believe it was the next day that I watched a pedestrian get hit by a car.  I have been trying to find some news on her condition, but so far nothing.  The day that it happened I held it together really well.  That's the great thing about constant medical chaos and perpetual stress- you handle trauma very well.  The next morning I couldn't get the images out of my head.  Thank God I didn't see the entire thing.  I watched her cross the road most of the way, then I turned my attention to the traffic light.  I heard the noise, looked up and saw her flying.  I know I didn't have to stop- technically I didn't see the whole thing, but I knew enough to be able to tell them that the driver couldn't possibly have seen her.  She didn't seem to realize that the turn lane didn't stop.  She just ran right into the car.  It turned even more nightmarish after her husband came over, obviously distraught, and yelled out to the paramedics that she was one month pregnant.  Yes, I know it could have been worse, but it was horrible.  Like a scene out of "Final Destination".

Friday & Saturday this week were unremarkable!  I love those days...  Sunday after work was wonderful!  We went over to Kevin's aunt's house for his grandmother's 93rd birthday.  Poor Grandma now has poor memory added to the poor hearing & vision, but she's so sweet, so full of stories.  It was a very pleasant evening spent with family that we really don't see often enough.  We always have such chaos.  It's work, or medical or kids.  We're just so busy!  It's hard to find the right balance, but at least we make some time. 

Lastly, tonight a Make-A-Wish volunteer called to make our appointment!  I went into my room to talk to her, knowing that I would break down a little talking to her.  I asked her- just to clarify- if our doctor had sent her blessings already.  Just to be clear.  I had assumed so, but this is so, so good that I didn't want to get Em's hopes up only to have them crushed.  She assured me that yes, we are cleared.  I cried.  I know that this will give her something to look forward to, and then later it will give her lifelong memories.  And they will take good care of her, and our other children!  Emily has her heart set on going to Disney World here.  She's always wanted to fly so I've been trying to convince her to fly to Disney Land if she wants to do Disney, but I also told her that it's her choice & I don't care what she wants to do.  If she is dead set on Disney here, there is another fantastic non-profit that I discovered on my Juvenile Myositis Facebook group.  Give Kids the World focuses on completely spoiling the family during their stay.  I've been trying to help her to understand that she can pick ANY wish that she desires.  Some kids have gone to Puerto Rico, some to swim with the dolphins.  Others have met their favorite star, gone to an event, traveled to Oregon in an RV, had a bedroom make-over.  As long as it's something that makes her happy we're good.

I'm not sure where we stand on her health right now.  She said the other night that her arm hurt, but she couldn't tell if it was her elbow or her upper arm.  Today it was definitely the upper arm, in the muscles.  Her legs are good though, with the exception of the rash flaring up again on her knees.  Today it looked almost purple.  Most days it's puffy pink.  I'm taking my notes and debating on what to do.  Tonight was her Methotrexate injection.  I'm hoping that will help and she'll be fine.  Otherwise, I think we'll have to go back up to 6MLs (18MGs) of Prednisone.  I really don't want to do that.  I know that she doesn't either.  I'm hoping to prevent it.  We shall see.

Tomorrow I also meet up with fellow blogger & JA mom!  We've been talking on Facebook and occasionally on the phone for quite some time now.  It will be so good to meet!  Can't wait!

Saturday, February 12, 2011

Addressing the inaccuracies

I had the misfortune of reading an "education article on juvenile arthritis".  Unfortunately, reading this was akin to how I would imagine reading a JA article in the National Enquirer would be.  The educational content was significantly lacking at best, downright ignorant & hurtful to the cause at worst.  As a parent of a child that has had arthritis for several years now, I have seen, read, and had conversations that absolutely floored me, but this one still has me angry a week later.  The link to this misinforming JA article is here.  If not for copywrite laws I would copy & paste it.  Apparently, the "doctor" that wrote the article writes these and leaves them on his blog.  The majority of his writing is riddled with errors; some advice is dangerous in other articles.

What makes me angry is that this man has no medical training as a pediatric rheumatologist, or in rheumatology at all.  He is writing about the same preconceived notions without doing the research that anyone with an opinion could write, but because he has doctor in his title, people are more likely to believe him.  This can be very detrimental when the subject is something like JA.  We fight so hard to raise awareness, trying to let people know that AutoImmune Arthritis is not because the joints are wearing out from use or old age.  AA is an AutoImmune disease; the body is attacking itself!  No one knows why this happens.

The first (intro) paragraph is innocent enough, though they don't call Juvenile Arthritis "Juvenile Rheumatoid Arthritis" anymore.  Studies show that most children do not have a positive Rheumatoid Factor; children that do generally have other issues, such as Mixed Connective Tissue Disease.  I'll let that slide because some old school docs still refer to it as JRA.  (I prefer Juvenile AutoImmune Arthritis, though that is not what the experts call it.  It's easier to say that and have people actually understand as opposed to making comments based on ignorance because they think they understand.)  Perhaps it's because he doesn't know that the Arthritis Foundation has 100+ different disease that fall under the umbrella of arthritis, including Raynaud's Phenomenon, Mixed Connective Tissue Disease, Lupus, Dermatomyositis, Polymyositis, Beh├žet’s disease, Lyme's Disease, Tendonitis, Wegener's granulomatosis, Scleroderma, etcetera.  These diseases are all different, yet they are all forms of arthritis.  Yes, children can get them all.

From paragraph number two, the first thing that struck me is that every article in the past that I've read said that most children are generally diagnosed around 18 months because that is when the child is walking, and often seems to be struggling to walk.  Symptoms can appear at any time.  I've never read that boys symptoms show after girls.  That could be correct, but I could neither prove nor disprove that one.   I personally don't believe that is true.
"JRA is usually temporary, and only in rare cases does it last a lifetime. Most commonly, it disappears as the child matures. This is due to the strengthening of the child’s immune system and energy over time."  The first thing that I have to laugh about here is this:  AutoImmune disorders are a result of an over-active immune system.    This would be why these children are put on drugs like Methotrexate, Enbrel, Remicade & Humira, which are all immune suppressors.  Some children are lucky enough to have it "disappear", otherwise known as remission.  They are not "cured".  Many of the children that had JA when I was growing up are the same people that now suffer in silence, told that they can't be sick because we can't see it.  How many people do you know of that had Lupus just go away?

This doctor admits that we don't know what causes JA, but he believes it's due to an energy imbalance caused by the spleen & liver.  Hmmm, some systemic cases may have those organs involved, but most people that I know do not have any organ involvement.  He goes on to say that the weather on the day of conception plays a part, as does the energy of the parents on that day.  So, if you're having a bad day and it's raining out when you're child is conceived you are much more likely to have a child with arthritis?  Somehow, I think not.   He seems to place a lot of blame on the parents.  I can honestly say that I did everything right during my pregnancy with my JA child.  I didn't drink or do drugs (and still don't, thank you!).  I quit smoking, I ate right, got enough sleep, babied myself to a degree, tried to stay away from any stressful situations.  I did everything right.  So, this is my fault?  If any of my children should have gotten JA then, it would have been my oldest.  My doctors advised me to keep smoking since I had a lot of stress, I didn't do any drugs or drink with her either, but I was pretty stupid about nutrition.  I certainly could have done better.  And she's perfect.  Go figure. 

He believes that better nutrition would benefit.  Though that makes a lot of sense, there are no studies that prove that diet has a hand in any of this.  There are specific foods that help reduce inflammation, and others that can cause it (like the nightshade plants- no peppers or potatoes, if I remember correctly).  In the beginning I did a ton of research on this, hoping that I could maybe make it disappear through better diet.  Aside from that info, the best that I could come up with is that many people with AutoImmune Arthritis also have other AI diseases that affect their digestive system.  Many are gluten sensitive and feel much better with a gluten-free diet.  Some can't digest sugars properly either, and they feel better cutting sweets out entirely. 

The last thing that I will pick apart for now is that this man claims that positive thinking "also plays a big role in the speedy outgrowing of JRA".  Ok, I do believe that positive thinking does a LOT of good, but I do not believe that you can cure yourself that way.  I also believe in the power of prayer, but that doesn't mean that Jesus Christ is going to come and cure my child just because I ask Him to.  He has a plan, it is perfect, I have no idea what it entails, & so I will not always get my way.  I realize that Oriental medicine is much different than traditional US medicine.  I know nothing about Oriental medicine partially because I have not trained in it and I do not just decide without fact-finding that something should or should not be true.  However,  I believe that if you're going to write an article on a condition that affects any group in the USA, you should do some research on some material written & proven true in the USA.

On a side note, Emily's new wheelchair came in!  We are very happy about this.  I am thrilled that it came in before a myositis flare left her incapable of walking, for one.  Obviously, we are hoping that will never happen, but since the odds are not in our favor we felt like getting a chair in quickly would be for the best.  Currently her endurance and stamina are not good.  She tries very hard, but if we have a lot of walking to do she simply can't do it.  Walking from the car to her doctor's office at the hospital wears her out.  We use the chair to get the the parking garage on one side to her doctor upstairs and at the opposite end.  If we happen to go to the mall (which is very rare, thankfully) she can't handle that.  Partially it's because her legs can't do it, but also because the steroids have puffed her out so badly that she can't get comfortable.  Of course, she went from 42 lbs to 62 lbs in a month.  I think 30% went to her face, 50% went to her belly, and the rest got spread out.  Her belly went from not having an extra ounce to looking like she was due with twins any day.  That does not make it easy to move.  Her feet are having a rough time adjusting, too.  It's a lot of extra weight added very quickly.  Still, she's very blessed.  Many JM kids are still bedridden for months and months.  She was only mostly down for about 2 months;  at her worst she could still drag herself across the house to the bathroom.  Many kids can't.  I shall leave with a new pic of Em in her chair  :)  We had just gotten her out of her bath;  I hadn't had a chance to comb her hair or anything yet.  We were rushing to get her into bed, but I really wanted to get it set up in case we're in a hurry the next time we need it.  The pictures were an afterthought.

Monday, February 7, 2011

Staying Strong

Emily is doing pretty well now.  The flare actually started to get better instead of worse!  I am so grateful for that!  She has had a pain at the top of her sternum this week.  I'm not sure what that is yet.  I was planning on asking her doctor last Tuesday but somehow I managed to forget with the whole myositis flare coming up.  She's pretty much over her cold, and doing really well, actually.  I'm hoping that this newest Prednisone decrease will start to help the swelling come down more and more.  She's still got so much in the belly that makes it hard for her to do all sorts of things. 

Kevin is surviving no thyroid meds for a month.  It's getting a little more difficult day by day, but he's hanging in.  He had his labs drawn Friday, so hopefully his doctor's office will call back (and normally they don't return calls... grrrrr) to say that his hormone levels are at a good enough point to get the radiation pill this week.  That will mean a 3-5 day trip to the hospital for confinement, then a full body scan.  After that he can go back on his meds.  I'm hoping they actually call back this time.  He'd like to get back on with his life, please.

The last bit of news is my dad.  (Dad & Mom are pictured above)  I've been trying to not worry about this because I try hard to only stress about one huge event at a time and well, this didn't fit into the schedule until this week.  He's had angioplasty before.  He's actually had several.  I want to say he had 3 before his double bypass and another 2 after, but to be honest, that was at a time in my life when my little people were not sleeping well, where Emily cried all of the time, and I was so crazy between stress and exhaustion that I literally don't remember several of those years.  (At least now the crying is only for infusions and she sleeps, so I sleep!  I'm VERY serious about sleep.)  Anyway, it's been a few years since we've had to go down this road.  He went from being very depressed and not being able to do much to feeling pretty good.  I can't say he's been running marathons or anything but he's done well for almost 76.  Last week he texted me to tell me that his stress test results weren't great, and that it could be that one of his stents was involved in a recall.  (Holy crap!)  So, I called them tonight.  This has them freaked out enough so they actually went to a lawyer and had a will drawn up along with a living will & power of attorney.  That part freaks me out.  He may drive me absolutely crazy, but he has a wonderful heart and he means well.  He's very smart, very caring.  So, if you all wouldn't mind, please keep us in your thoughts and prayers yet again.  I am very, very grateful to have such a wonderfully caring community on Facebook.  My FB friends & the moms on my groups really have helped me to keep my sanity when I didn't think it was possible.  I cannot even believe the amount of things that we've had go wrong in the past ten months, but with the support of great friends and family, we'll be ok.  Thankfully, I learned what they mean when they say "Let go, Let God". 

Thursday, February 3, 2011

Infusion, Dr. visit & first Myositis flare

As it nears Remicade infusion day, the tension tends to build.  By the day before, Em & I are both a little crazy.  Monday night I was laying down watching TV when I heard crying.  I went to go investigate, & found Em sitting on her floor sobbing hard.  I sat & held her, talking to her, getting her tissues, cuddling.  Why so sad?  She was terrified to go.  It is absolutely heartbreaking to watch her get so upset about something that she needs- especially when it's something that kids shouldn't have to go through.

The drive up is always kind of somber.  She looks like she's going for her execution or something.  On our way up, I heard Mandisa's latest release, "Stronger".  I cannot explain to you on how many levels this touched me.  For me, for her.  It seemed to hit on exactly what we were going through.  It's amazing how God can work in our lives, putting in front of us just what we need, when we need it.  That is how this song felt.    

After we parked, I asked her if she thought she could walk across the street and hospital or if she'd need her chair.  She said that her legs felt tired.  Um-hmm.  Putting the puzzle pieces together, thinking about how her knees looked bright red but didn't hurt.  I thought it was my imagination that her elbows were looking more red.  Once we got into the check-in area, she was called back quickly.  I asked right away if Jason, the one guy that can get her on the first stick, was available.  Our lucky day- he had just come off of lunch!  I was a little worried at first.  He couldn't find a good vein.  The one that he could feel was deep and they didn't think they could reach it.  Somehow, he managed to get it on the first try, plus they were able to draw blood from it without it collapsing!  What a relief when that was over!  Of course, her blood pressure ran high the whole time.  I was a little worried about that since she's on medicine for it.  (And by the way, her Raynaud's has been flare free!!!!!  Wahoo!)

Here's where she got mad at me:  I pointed out to the nurse practitioner that her knees were bright pink and puffy, but she claimed they didn't hurt.  Her face rash looked ok, but that isn't the only marker.  Sure enough, the nurse practitioner said that it looked like a flare, probably brought about because Emily had bronchitis & a cold.  I guess she was afraid to see the doctor, knowing that she was flaring.  When she came in and tried to look at her knees, Emily screamed at her in a way that I've never seen her do before.  She claimed it was because her hands were cold.  I was embarrassed!  It was vicious sounding!  I found out the real why later.  I took Emily to the bathroom a little later & she asked me if she was staying over.  She seemed unconvinced when I told her no.  So I asked her, "you knew that your JM was flaring, didn't you?  Is that why you didn't want to come today?"  Yup, that was it.  She was afraid that she would be kept as inpatient because she was flaring.  Poor little kid!  I think that subconsciously I knew that she was flaring.  I have tried hard to prepare myself for the fact that this will most likely be something to come & go for many, many years to come, but I think a part of me has still been in complete denial that she's flaring.

In the end it turned out to be a good appointment.  We are still able to decrease her Prednisone to 15mgs daily, while increasing her Methotrexate to .6 on the needle.  I was very surprised about that!  I was completely expecting to have to increase Prednisone, so that was a pleasant surprise.  We even got out a little early!  We were back home by 6:40 PM.  Usually it's after 8 PM when we get back.  At least the drive is scenic.  I have wondered what it will look like through the spring and summer  :)  I don't look forward to the long drive, but I do enjoy the views!

Last thing- She was talking to her Daddy this morning in the kitchen, telling him what her legs felt like.  She says they feel like there's metal in them, they're heavy.  Right now it's just in her legs.  We had another nice chat about being honest with us about how she feels.  I tried to explain to her that I read so much in books, on the internet, and in my Facebook support groups that I pretty much know what's going on.  Yes, I will have questions that I cannot answer myself or via FB, but I have a pretty good idea of what's going to happen.  If she had been honest with me, I could have told her what I thought the doctor would do.  I could have helped with a lot of the fear... if she had let me.  We all have a cold right now, except for Gir.  I'm barely functional right now, but we keep it together.