6 more days!

The days are flying by somehow as we continue to prepare for our trip to Washington D.C.!  We are so excited!  I can't wait to meet so many of my JA "family" from Facebook!  There are so many people that I am anxious to meet!  There are several that I wish could be there and won't be.  :(  Maybe another time I'll be able to meet people like KW and SBH!  The conference should prove to be wonderful experience for us all.  Not only do we have 4 days of the conference to look forward to, but all of the museums, the National Zoo, and meeting people outside of the conference like LPM!  People that haven't connected to anyone via social media such as Facebook probably wouldn't understand, but in situations like mine, these people can become closer than your family, and certainly more understanding in many cases.  (I am blessed to have a very understanding family, but many others don't.)     These are people that I hear from daily.  I worry if things are quiet on the other end for a day or two.  I can't wait!

We are also anxiously awaiting Emily's infusion.  Let me just say right now what a dork I am.  I tell ya', I have spent a very large amount of time over the past few years researching Em's various conditions.  I can tell you very specific things about her diseases, certain antibodies, what they mean, and even in some cases how they use them to test.  However, sometimes things that I really know just don't become obvious to me when they apply in our situation.  My husband pointed out something to me the other day that was a really big "Oh, DUH!" to me.

Every month for the past six or so months, the week before her infusion Emily gets "sick".  Every month we take her to our pedi, and every month she has been put on antibiotics.  Oh, for sure she has had a sinus infection or two in there.  Normally she would have her infusion this Friday.  So, it really shouldn't have surprised me that Tuesday she had a fever.  I'm not really used to her having fevers.  She was on Enbrel for 2 & 1/2 years without ever having a fever, including when she had H1N1.  Fever to me has still had the "sick" stigma attached to it.  While on the one hand I know that many RA patients have fevers when they flare, this has never been a trademark for Emily, so I never even considered it.  Until my hubby pointed it out.  Wow, how did I miss that one???  She's flaring big time right now.  Her elbows are better but her knees are giving her a very hard time.  She's trying not to walk.  The fever lasted one day; it's gone now, but she's still hurting.  One more thing to bring up at her next appointment.  And I was so worried about her being sick all the time.

This week has been pretty special for me for little reasons.  I don't post my religious views very often, as I understand that not everyone believe that Jesus Christ is our savior.  I try to make this blog for everyone to learn from, but I have to say this.  I don't believe in coincidences, and I feel I need to post how I feel right now.

If you asked me back in 2007 if I thought that I was a good person, I'd have told you that I didn't know how to answer that.  I wasn't a bad person, but I didn't particularly like myself.  I was very quick to point out my flaws, but not so much with my good points.  I know that I have said before that Emily's diagnosis changed our family significantly.  Yes, it's very sad, and yes, sometimes I still cry for her, & I seem to cry when I try to tell people what's wrong with her.  Overall, I'm actually very blessed, very happy, and very much at peace.  Learning to let go, let God has helped a lot.  Knowing that it's out of my hands and up to God helps.  I believe that He has a plan for us.  I see evidence of that daily.  It's really cool to know that I'm being used.  I know that, no matter what, He has a purpose for me.  I know that I help people.  On the flip side, I know that many, many people have helped me.  I feel that my contributions are small, but important nonetheless.  I go out of my way now to find ways to help, something that I never thought about before.

I had two conversations this week that made an impact.  Both were at work.  I had someone tell me that, thanks to a conversation that we had, she found out that her daughter has Graves disease and thyroid cancer.  She's ridiculously young.  I think she said 11?   I had told her get a second opinion if your gut tells you your doc is wrong.  It's easier to get a second opinion and find out you're wrong than it is to find out when things go really bad.  Her pediatrician insisted that there was nothing wrong with her.  It was her second opinion doc that found out why her daughter was acting so tired and different.

The other happened after I brought something in to help someone.  I just love this lady anyway, but she has fibromyalgia and she's having a very hard week.  I told her that I would remember to bring something in that I knew would help.  I see when she's having a hard time.  I'm in tune.  She took me aside later to tell me that she could see how God was working through me, and He gave me a good heart to help people.  That meant so much coming from this person because she is someone that I look up to a lot.  She is one of two people that I really feel a spiritual presence around all of the time.  She & Lita seem to radiate a peace and love that I am drawn to.  These are the types of people that make me want to be a better person, and they are both so loving, so accepting.  I feel this is how we were all supposed to be.  Anyway, the whole conversation was just so unexpected and deep.  I love having deep conversations with her because she gets on a roll and starts spouting scripture.  I learn so much when we really talk.  No matter what in life, I know that I have a lot of love.  That is all that I could ever possibly ask for or want.  Love is so much better than anything material that I could think of.  "Love is not proud, love does not boast.  Love, after all, matters the most."

Thank you, April. Much needed!

April has probably been one of the best months we have had in quite some time.  April has been filled with good news, and happiness over things to come  :)

April was kicked off by our camping trip with our Cub Scout family.  I had really been looking forward to this weekend as a little vacation.  I was hoping that Emily would be ready to run around with her friends, but she actually wanted to be with me for 98% of our time there.  The first night I think we kept everyone awake :)  She has some, ummm, flatulence issues.  Honestly, my little princess can let 'em loose better than any guy I know.  Our first night in the tent she had gas so badly that she woke up her brother, and across the campsite her farts were heard.  Kevin got a text saying "Gas gas gas :)"  and we all about died laughing!  This was around 4 A.M.  We had a few people come over to the tent to see what all of the commotion was about.  We were hysterical!!!  What a great day that was.  I love being out in the woods, and being there surrounded by family (including extended!) was really cool.  We took a nice hike the next day.  I wish I didn't have to push the wheelchair, that Emily wouldn't need the chair, but I'm so happy that she was able to come because of it.  We saw some beautiful plant life along the way, & even stopped to grab some wild blackberries!  That weekend was just what I needed to feel back in tune with reality.

Though it's not a huge, noticeable difference yet, Emily is definitely losing some of the steroid weight.  She is so excited about that!  She keeps telling me about different things that she can do, like button her pants more easily.  I see a huge change in her attitude this month, likely due to the last steroid decrease.  She has more energy, she wants to do more, she has some goals set.  Because of this she is happier, doing things like walking more and playing Wii Sports again, and finally she is back to loving her brother like a friend!  That has been the hardest part of all of this.  She & her boy were always so close; suddenly she was cranky towards him more often than not, yelling at him and just being mean to him.  I'm so glad they are playing together again.  As Kevin said recently, harmony has been restored.  It's the little things that we've missed, like that.  She actually wants things again!  I never thought that would make me happy!  Yes, truly April has been a turning point.

She's doing well in school, too!  She had the 2nd best grade in her class on her Time test.  That is exciting partially because she missed that chapter & she worked extra hard to catch up!  For a while she didn't care at all about her school work, or anything else.  She's really determined right now, & I'm so thrilled to watch it happen.  We had a fantastic IEP meeting in school for her.  They are increasing her time with the school Physical Therapist, trying to pull her out during PE since she has such big limitations in there.  She can do low impact things like walking, but nothing that could potentially cause injury as the steroids can cause brittle bones.  Her teachers are very proud of how far she has come this year not only with her school work, but also with her attitude.  She used to have "math breakdown", but she seems to have moved past that.  We are very, very blessed that our school is as caring as they are.  Before placing her in this class they really stopped to think & talk about where the best place for her would be.  They were absolutely right to place her in this class.  She isn't just taught; she is cared for.  Obviously, any parent would want their kids cared for in school, but when it's a child that has dealt with so much, that really needed to be nurtured and loved, it is much more appreciated.  I love these teachers in a way that I don't think they could understand.  You just couldn't know how much their love for her has meant to me, or to her.  They have impacted her life in a huge way.  Truly that is God watching out for us, trying to make some things easier.  They have been a gift.

Our Make A Wish volunteers called just the other day to say that we have been approved for our Disney Make A Wish trip!  We are all so excited!  All that I need to be happy is to watch the kids be happy; that makes this a dream come true for me.  I was so happy that as soon as I hung up with our volunteer, I burst into tears.  The kids kept asking me what was wrong :)  I was just so happy.  There have been so many things that Gir has wanted to do, but we haven't been able to accomodate her because of time or money.  There are many things that this trip will address for her.  And it will be wonderful for my dear, sweet little man.  He's such a good boy, so tolerant & sensitive.  He needs something really good.  My mom told me the other night that he was telling her how things were going so well that he was worried about what was going to go wrong next.  That's how things roll around here.  I swear, it's always things that we could never have controlled in a million years.  But hey, life is never boring!

More good news is that Kevin went for his yearly physical to find that everything looks good!  His labs are where they should be, too.  He is getting better slowly but surely.  We go on our trip at the end of  May.  My hope is that by then Kevin & Emily will feel so much more like themselves.  I want them to both feel good & have a great time.  This trip needs to be magic, especially for Em, but for Kevin & the kids, too.  I am so excited that I could burst!  May is also our arthritis walk, too  :)  We look forward to that every year.  It's so nice to be with people that understand you, even if you don't know them.  I'm sure that I'm forgetting to mention a bunch of things, but I've covered the big stuff now.

I found a blog post that really hit me.  It made me stop and think about how Emily must feel.  Here is the "Arthritis Angels: A Walk In Someone Else's Shoes" post. 

Hey, it's spring!  Don't forget to look around at some of the beautiful flowers, including weeds, that have popped up  :)  I truly believe that these are gifts to us, meant to put things into perspective.  Will you stop to smell the roses today?  You really should....  

Our latest crazy update

Where does the time go?   I feel as though I haven’t had an extra second for days now.  Holy frustrating week!!!   I thank God that I have a 3 day weekend coming up.  I really need some down time, & some fun thrown in! 

Monday started the week with Kevin going in early for his one big radiation pill.  We knew that he would need his own bathroom, and that he was supposed to eat using disposable stuff.  No contact.  Yeah, that was the start of all of the other things that they should have told us but didn’t.  He got home from the hospital as I was trying to get the kids off to school, telling me that everything we were told was just the tip of the iceberg.  He couldn’t be within 6 feet of anyone.  Like, they asked him if there was another bed within six feet, even with a wall separating.  If so, that person in that other bed could be in danger.  Doesn’t that give ya’ the warm fuzzies???  Better yet, anything that he wears or sleeps on has to be stored away after his seven days of confinement  for a full week before it can even be washed.  Wow.  His plates, forks & cups have to be thrown away in their own bag and stored away for a week before we can put it out for the garbage truck.  And he has to carry a card with him (once he’s allowed near people again) saying that he’ll be radioactive until May 21, 2011.  He will set off Geiger counters.  (He has a half life!)  Yay, huh?  Yeah, we had no idea what we were getting into.  This gave us both this grim, scary feeling about it.  It’s been very surreal as he put it.  It’s freaky.  I know it’s necessary.  I know that this is a precaution; I’m trying not to get too absorbed or freaked out by it, but it’s scary.  One funny that came out of it... one of our wonderful, beautiful children expressed their disappointment last night that Daddy wasn't actually literally glowing.  The kids had expected him to glow like a Christmas tree.  LOL!!!  He slept through the first 3 days for the most part, but I think he's recovering now. 

That Monday night, Make-A-Wish was supposed to be here.  Our volunteer has Lupus.  She’s on Methotrexate & steroids, just like Emily is.  She panicked when I called her to ask her if they’d like to reschedule.  We rescheduled for this upcoming Wednesday.  She didn’t think she could be around the radiation.  That made me worry, so I called our rheumy to make sure that I didn’t have to move Emily into a hotel for the week.  I also realized that Tuesday was our Gainesville day, & I had been expecting Kevin to be able to take Zach to school.  I realized that I would have to leave before I could even drop him at school, and there’s no way that I would be back in time to pick him up.  I asked my parents to get him, but dropping him off here wouldn’t be a good option with no one to take care of him, so I kept Zach with us when we went to Shands.  It was a longer drive than usual.  Construction and the endless “are we almost there, Mom?”’s kept me busy.  That boy had me so busy while we were at the hospital that I didn’t have a spare minute.  Usually the time drags by. I totally expected to catch up on Facebook, but I didn't have any time at all to.

Her appointment was AWESOME!!!  They seemed amazed by how well she's doing.  For the first time her muscle enzymes are down!  When she was admitted in October, her ALD was a 15.1.  The normal range is 3.3 to 9.7.    This week Em’s was a 9 -- within the normal range!    I was supposed to get a copy of her labs, but we all forgot.  We have more of a decrease plan for her steroids!  I am so thrilled that by the end of the month she will only be on 9mgs daily, and after her next appointment it should be down to 6mgs!  Her attitude has been better with the decreased steroids, as well as the prospect of Make-A-Wish. That has helped her to feel better.  They said that she will be on steroids for a total of 2 years, but from next month out it should be very low, maintenance  doses.  They said that at about 6mgs you see the water weight start to drop off.  That will help a LOT!!!  Her elbow has been hurting her, and she’s had that sternum pain lately so we’re increasing her Remicade next time, but I’m comfortable with that.  We discussed sun rules, since sunburn can actually cause a disease flare (which would NOT be good!), we discussed shampoos.  For whatever reason, the steroids make her scalp dry, which is normal, but her hair is very oily.  They say that’s weird- usually the hair dries out and starts to break off.  I thought that was interesting.  To make things even better, they were able to get her IV with one poke, and get a ton of blood from her on the first try!  I’ve been telling her that it’s the steroids that were making it hard;  I think she finally believes me! 

Last time she went, she felt well enough the next day to go to school & therapy.  This time… no such luck.  I had panicked a little bit, trying to figure out how to make all of these things work again.  Thankfully, my work is very understanding.  I was able to stay home with Em yesterday.  Heck, I won’t lie- I needed it, too.  I wouldn’t have called out for myself, but Emily not feeling well offered me a chance to breathe & vegetate.  Also, Kevin hadn’t eaten all day Tuesday while we were at the hospital because he’s afraid to touch anything.  I can’t take care of him the way I’d like, but I can kind of help him out that way.  Jeez, had we known how complicated this was going to be he’d have just stayed at the hospital.  Or I’d have taken the week off.  We truly had no idea.  So that has been this week’s roller coaster.  I hope you’ve enjoyed the ride.  Now please get off before you start to lose it, too!!!  J   We’re trending up.  I can feel it.  We can laugh about it now  :) 

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!

Lots happening

A few nights ago, my oldest daughter found a picture of Emily that I had put in the scanner.  It was from the last year around this time.  She has a cute little smile, and she looks happy and well.  Gir stood looking at this pic for a while, and then says "It's so sad but I forgot what she used to look like".  We all had like a moment of silence.  It's so hard to get used to this being her.  She was once so petite, so little that we were trying to cram every calorie possible into her, and now her biggest obstacle is her steroid swollen tummy.  We have accepted that she will never again look the same way, but it's sad.  No, I don't feel that she's less beautiful, but this has been difficult on us all for so many reasons.  Seeing her so uncomfortable, so sad about her own appearance, not able to run & be free like she'd like.  She noted that her hair is darkening.  She's FINALLY eating, at least!  She came home from school yesterday announcing that she had tried tomato soup- and liked it!  I about died!  When she's off of the steroids, when she loses the water weight, she will likely have finally gained the weight that we've been waiting for, her hair will probably be brown.  It's just so weird.  She was changed so quickly that we barely had a chance to adjust.  The changes in her meds are definitely helping.  She seems to have a little more energy!  Did I mention last update that she's been jumping a bit in her therapy sessions???  That is huge.  And tonight she was trying to hurry her brother up.  He was walking too slowly for her.  That was also a first!  I was very happy to hear that!  The rash is almost gone.  She's doing well for the most part.  The only concern with her is that she says her chest is hurting on and off.  It seems to be right in the middle, at the top of the bone.  I don't think it's what the other kids seem to be complaining about lately, but I have a note to ask when we go back.

My son is the one we're watching right now.  I have learned not to jump to conclusions.  We watch, we observe, we research, we listen, we talk to the doctor.  That said, I am not panicking, and I'm hoping I'm just being paranoid.  I'm fairly certain that it's nothing, but... Ok, so he has psoriasis.  He's had it since 2007-2008.  Usually when he says his leg hurts or what not, it's usually said in a "I need more attention!" type of way.  Recently we had a discussion about his handwriting being so bad.  I asked him why it's pretty good sometimes but not often.  He said his hands hurt.  Hmmm.  Ok.  Well, they don't look inflammed.  I noted it, but didn't dwell.  Well, last night I happened to notice that his thumb nail looked funny.  They say that nail bed changes and nail pitting are signs of psoriatic arthritis.  I didn't say anything to him about it, but I was a little freaked out at how his nail bed looked white and bubbly and his nail looked abnormal.  I came out to the living room to tell Kevin to check it out later.  This morning when I got up he was already up.  He said that his ankle hurt.  He was limping a little bit.  After a while I noted that he was able to put weight on it comfortably.  I casually asked him about it a few more times, determined that it was probably fine, and put it in the back of my mind.  Tonight as I was tucking him into bed, I asked how his ankle is.  He said it's fine, but his foot hurt near the toe area.  He said it hurt "in a circle"- both sides of the foot.  Still not panicking, I am making a list of questions to ask his dermatologist.  Thank God I made his appointment 6 months ago.

Last big thing to note, Kevin is on the low iodine diet that he needs to maintain in order to go in for his radiation.  For those that are new or need a refresher on that one, he had his thyroid removed in March of 2009.  When they took it, a pathologist found a teeny, tiny speck of cancerous cells.  Generally, at that news most doctors would probably have done the radiation then, just to err on the side of caution.  Well, it took so long to find this out and she was so not worried about it.  Eventually, she decided that he should got for testing to make sure there were no cancerous cells in the area.  The results showed "something".  There was "uptake".  I was a bit floored at this because she tells me at MY thyroid appointment when Kevin wasn't even with me, so I didn't think to ask some of the questions that I would have had I been prepared for this type of thing.  Therefore, all we have to go on is my assumption that the cells are probably just abnormal and they want to blast them to be on the safe side.  Fair enough.  So, he has to go back off of his Synthroid, the one medicine that makes him feel human instead of like a dried up slug that's been thrown and then stepped on, switch to a med to wean off for a week and then go with no meds for another 2-3.  Hopefully at that point his labs will be done and show the right amount of thyroid hormone so that he can go for the radiation.  After that he'll have to stay off of the meds a little longer in order to have a total body scan as a final cancer check.  And then maybe, just maybe after that, he can go back to having a life again.  He's had to devote a large chunk of the last few months to his health & to Emily's since he was the one home.  It was a very weird role reversal for him, and he's really looking forward to having his life back.  I'm confident that this is all just a precaution and things will be "normal" again soon, though it's frustrating timing on his docs part.  If she had proper follow through before this would have been done before we had other stuff in the way!  Ah, well.  Can't change it...

A lot can happen in a week!

This has been another crazy kind of week!   Here's my disclaimer:  I'm on an antibiotic that is causing almost a high feeling.  I feel like I'm on a pain killer rather than an antibiotic.  I got about one whole hour of sleep last night because of it, so forgive me if I make no sense.

The Prednisone has blown Emily up to (what I'm hoping!) is maximum puffing capacity.  In short, I don't think that kid can retain any more water or blow up any more than she already has.  She looks so pregnant.  :(  She hates it, but she knows that the meds are helping.  In fact tonight she told me "Mom, I can't wait for my next infusions.  I really think that I will be able to run again soon, after either the next one or maybe the one after."  YAY!!!  Ok, so she's not yet ready for marathons, but she's walking, and she made it to school for a whole week!  Those 2 points are huge!  She also pointed out that her legs aren't as tired now, but her arms and shoulders still get tired.  Well, her knee tends to "fall asleep", but compared to the myositis that's a small price to pay.  All in all, she's getting better slowly but surely.  The rash is still there, however, and when there's active rash there's active disease.

I hadn't been to church in a while.  Sundays are my Saturdays, or at least were until recently when they became my Fridays.  Sunday is the day that I just can't get out of bed, so we haven't been to church on Sunday for a while.  Thursday nights are church for us, but also Brownie night and Emily really enjoys Brownies.  This week there was no Brownie meeting so we went to church.  I'm so glad we did!  Friday I had my yearly thyroid check.  I usually don't worry about these as everything has always been good, but when I was looking at my lab prescription I noticed that they had also circled "Hyperlipidemia" as a diagnosis.  This had me laughing at the irony; I pour hours and hours each week into medical issues revolving around my daughter, and yet I don't see that I have something going on until a year goes by???  Oy!  I went into the office understandably expecting to get "spoken to" about my diet.  I love my greens, stay away from fast food and try to stay decently healthy but yes, I am a junk food addict.  Give me some chocolate & a Mt. Dew & I'm happy!  (Doesn't take much.  It's the little things!)  Instead, the doctor comes in and says "I need to talk to you about your husband.  I've been meaning to call him."  Ok, wasn't expecting that. It's a good thing that I went then.  Not long ago he had a bone scan of the throat since they had found some cancerous cells on his thyroid when they removed it.  He was at their office not too long ago, but the results were inconclusive.  He was told to call back, which he did, but they fail at returning phone calls.  Then Emily went into the hospital & it got put on the back burner.  Anyway, she said that his bone scan showed a "bit of uptake in the throat".  I should have asked her to clarify, but I tend to forget to ask important questions when I'm shocked.   She strongly recommends that he does radiation.  In his case it is just a pill; it's basically the same radioactive iodine pill that they give to people when they undergo the thyroid uptake test.  First he has to go off of the one medication that regulates his thyroid hormones, and stay off of it for probably 4-8 weeks.  The fun in this includes:  being freezing cold when everyone else is fine, horrible back pain, inability to sleep, mood swings, extreme fatigue, total body swelling/ arthritis feeling.  Then he takes the pill, stays 3-5 days in the hospital, wait a week, then go for a total body scan to make sure there's no trace.  Of course, in this process we will actually NEED to have calls returned to move on to each step, and since they are very, very bad at returning phone calls it will probably take longer than it should.  I got a bazillion prescriptions for him, for medicine & testing both.  For my efforts I was rewarded with a "you're doing great!", a prescription for my normal thyroid med, a warning that I won't be on the lowest dose forever, and the antibiotic for my toe :)  I know I need to suck it up and see a podiatrist, but I really don't have the time, I would rather perform my own surgery when possible, & I didn't want to waste any more money on medical bills.  I'm sure I'll still have to go.  I suspect I have a mile of toe nail in there that I can't get to no matter how deep I dig, but at least it's not continuously oozing all day long on the antibiotic.  :)  (It's the little things!)  Not to mention, I know I'm getting sick.  For once, I hope it's a bacterial infection and not just a cold.  Wouldn't that be lovely if I could avoid being sick because of the antibiotic?  I worry a bit because I haven't been on this one before, and so far the only antibiotic family that doesn't cause me hives/ rash is the Myacin family. 

Last but not least, we were awarded Social Security for Emily!  Unfortunately, they decided that she was only eligible for 2 months, so we got it and lost it in the same week.  That means that I can't get her on the medical that I need her on.  Our amount owed for one IV infusion from the old rheumy is $300.  She had 3 of those before she was hospitalized for 6 days and in the hospital she had 2 drugs that I know are extremely expensive.  I've been told that the IVIg can be as much as $4,000.  I'm running out of time trying to figure out what the heck to do.  If this keeps up we will not have one extra cent for anything aside from groceries ever again.  Praise the Lord, for I learned how to "Let go, Let God" a long time ago.  Simply put, for what I cannot handle, or deal with, or what worries me too much I give to God to deal with.  That is one of my secrets to being happy.  I try to do what I can, but I have faith that one way or another it will work out.  I just have to figure out what needs to be done, and how to do it.

Anyway, I'm rambling.  My mind is crazy with this medicine right now.  (I haven't been this hyper in a long time!)  Keep us in your prayers, please!

Back to School! (Half O.T.)

I always feel that we are blessed, but sometimes I feel that we are *extra* blessed.  For one thing, our children are all in the "right" schools for them.  I'm not a fan of the Florida educational system, but as far as FL schools go we are blessed.  This year, Emily got a teacher that was formerly in the ESE area.  The ESE teachers deal with children with all types of disabilities from learning to physical to mental.  Not only is this exactly what she needs, but she had worked with Emily before and Em is very comfortable with her.  She's a little sad that her two best friends are in a different class, but she's not the type to get down about things.  She's making the best of it.  She grew up a lot over the summer. 

The school made sure that I filled out a new medicine form for her.  They try hard to take care of her.  They have a care plan in place, plus she has an Individual Education Plan, and a 504 Disability plan in place that they helped to create!  I love so much that they care.  I have heard that many arthritis kids are in schools that don't want to see a problem (it is invisible), or blame the parent, accuse the child of faking, etc.  I truly feel blessed that she is in a place that protects her and has compassion for her.  Who could ask for more?

My Zachary is also with a teacher that he knows.  Not only did she half Emily half of the week last year but her son is in our scout troop!  Zach knew her more from outside of scouts, as a mom to her son and baby daughter.  He's absolutely thrilled!  I had requested either her or the other teacher that Em had last year.  They are both marvelous!  They are very kind, and they care.  Depending, he may end up with both teachers like she did.  That would be just fine with me.  I was worried about him because he can be a bit weird- he's a sensitive guy!  He hated school last year.  So far, though, he's happy!  I'm so glad.  I was worried about that.  We kind of suspect that he's brilliant but doesn't want everyone to know.  He'll read things effortlessly that I would never have thought that he could read.  He is good in math.  He's TOTALLY OBSESSED with batteries.    I dunno.  I take it as a good sign.  He's always trying to figure out how things work.  It's good.

Ashley is happy to a point.  She was really excited this year because she was supposed to take Driver's Ed.  The FCAT messed that up.  This is the horrible thing about this test.  This child is so rebellious that she READS.  Like, in her spare time and the whole summer, she spent her time drawing, reading, and writing.  All summer that's all she did.  She's writing a book.  She's spent hours planning out characters, and writing.  She blew reading on the FCAT by just a few points.  The funny thing about that is they think that the people that graded the tests messed up, and many more kids failed than should have.  So, because of what is most likely their mistake, Ashley has to take Intensive Reading instead of Driver's Ed.   She was angry about this also because this blows her plan to take two years of French classes.  (Yup... she's a rebel.  LOL!)  She is choosing to rise above it and use bigger words in class than her teacher!  :)  I've read her writing.  It is very eloquent!  I feel for her, but there is no getting out of that class.

I look back on the last few months with Kevin losing his job (blessing, oddly enough), finally getting on the right dosage of medicine only to be told "Great!  We figured it out.  Now get off of your meds until they are all out of your system just for this one test, then you can go back on them."  So, he's been off of his thyroid meds for the past month and a half!  Do you have any idea how many things ones thyroid can affect?  Really?  I had read up on it years back, but I had forgotten how messed up it can make you.  He had his thyroid removed back in February 2009, so to be off of his meds has been devastating.  He's had headaches, can't sleep, whole body swelling, stiffness, mood swings, extreme fatigue.  He had a hard time brushing his teeth.  He can't stand for long periods, his back is acting up.  He keeps going numb!  He'll be standing, or even walking and his legs go numb.  His hands and arms, as well.  It affects his concentration, his thoughts.  He's been in a cloud, he says.  Through all of this he's continued job searching to no avail.  I say thank God!!!  If he had gotten himself a job in this condition he'd have lost it already.  Things have come together, for the better.  He's been back on his meds now since Friday.  Slowly but surely he's starting to feel better.  This isn't the way that he wanted to spend the summer, but it's the best time to go through it.  At least he didn't have to worry about leaving to go to work.  Now we just have to find out the results of the test.  It was a bone scan for cancer.  No one has bothered to call us back yet.  They also should have done this test after they first removed the thyroid since they found just a speck of cancer in it.  I'm sure there's nothing to worry about, but it's hard to not worry.  They should have called back Friday but they didn't.  Time to find a new doctor.

On that note it is bedtime.  I'm exhausted!  Today we ran errands, took Em to therapy, went to Cub Scouts...  Busy day!  Good night!   : )