Tuesday, August 31, 2010

It Just Had Too

We came in thru the ER today because all the sudden the calcinosis I have been fretting about started to turn red. He woke up fine. Came down stairs, seemed ok. Made a bed on the couch. He was all excited doing that. Climbed up on the couch and then all the sudden got really cranky. Started asking for me to lay with him. I got a closer look and his chest had a red bump so I touched it like what the heck. He jumped over the moon when I touched it. So I call the nurse left a message. I called my sisters to see what they thought. My sister called me back and said that she remembered something. My brother in law was playing air plane with him the night before, and throwing him up far in the air. The nurse rang on the other line, I clicked over and barely let her talk. I told her I think he might have a broken collar bone. He got off the couch and waddled. He was in pain. I told her we were coming in thru the ER. She told me to keep him as still as possible to keep the bone in line.  At that point he was laying on my bed. He screamed when I touched him. I got him in the car in his underwear, he was so uncomfortable. He cried. He was crying because he knew where we were going and because he was in pain. The drive to the hospital is about 50 minutes. He slept on and off. He kept getting pale. Then he said I have to puke. I told him to go ahead if he needed to. Instead, he went back to sleep. It was not usual for him. We got to the ER. He was scared and so was I.  I pulled my car through the driveway, did my best not to cry.  I did my best to get my keys out of the ignition.  I was shaking.  I picked him, wrapped him in a blanket, as if he were my precious newborn.  Although my new born didn't swaddle nicely into my arms.  He soft little hands wrapped around my neck. He hide carefully under his fire engine blanket as his little legs dangled at my sides. He barried his face into neck.  He cried with every move I made.   He felt warm to me. But his temp was only 99. That is not considered a temp. They took his blood pressure. There they were. Every where I suspected he had calcinosis is a bright red blotch. Like its trying to come out. After being in the ER for an hour, his temp shot up to 103, and he began vomiting. I was so confused. I brought him in for a broken collar bone? Nope. Its not broken. The calcinosis is coming thru it seems. But then his labs came back. White count is 21,000. That indicates an infection of some kind. So tonight we are on watch. The rheumatologists don't want to pulse him if he does have an infection because that could boost the infection. But if its the calcinosis that is causing the trouble, then we need to stop the inflammation. Another fun fact: today was the first day he had no steriod. We were tapering prednisone so today was day one with none. The doctor did wonder if the calcinosis is causing his body to go into shock or infection mode as a reaction to this process. So that is were we are at. His fever broke, he stopped puking.

They ran more blood tests tonight checking for everything. I think right I would rather here he has some a virus. But the calcinosis wouldn't make sense if it were viral. So thats whats going on.

Monday, August 30, 2010

Back to School

Today is the first day of school here in the Bradford Household. I can hardly believe it. It went by very fast. This week we went on an overnight camping trip up in the mountains. It was a lot of fun. Uncle Ray and Aunt Amy came along. Dad had to stay home. He missed us very much. Gary had a whole lot of fun. He loves being with the family. He was a little whiny at 2am but did just fine. None of us wanted to come home.  We had fun playing pancake tag.  A leftover pancake became victim to being tossed on to the others car windshield. The kids took great delight in trying to toss it and driving away quickly so Auntie and Uncle didn't have time to get it back on our windshield.  This game took place during frequent potty breaks which were frequent thanks to Gary.
Roasting marsh mellow's over a propane stove due to a fire ban.

This week starts the biggest taper yet. Every other day of 1ml of prednisone. Still holding at level "Good" . He is also adjusting better to the new medicine they started him on for the molluscum. It seems to be having an effect. They at least look better. The constant potty was getting a little tiresome. Especially while we were camping. But it seems to have finally subsided.

I have no comment. Just stay put. Stay under his skin and go away on your own and I will be happy. I just had him in my lap. He want to bend backwards to be silly and hang upside down. In the light you can see the calcinosis throughout his chest, in his neck area. There seems to be more in his groin area. So much for having no comment. As long as it doesn't bother him. OK it bothers me, what can I do.
It is hard to see, but I put a little black pointer right over it.  

We have a new member to the family. I can't believe I am about to type this but we have a dog. I am not a dog person per say, but this one is pretty different from the rest. Her name is Nikki. She is a Asian Akita Mix Blonde Fox looking dog. LOL She is six years old. Her owner recently past (my brother-in-laws father). We spent a little time with her and decided to give her a home. She seems perfect. She listens well, doesn't park much, and is house broken. Perfect. She loves to play catch. She runs and catches frisbee's and ball's mid air. She seems to be patient with Gary so its so far so good.

Nicky and Elexis on her first day of school.

Gary's wish has been put on hold. We found out in order to put up the sun protected play set, we need permits from the city. Tap tap tap. *Shrugs* To be continued.........

CURE JM Pepsi Refresh Project
We are bouncing between number one and number two in these final two days of voting. Very nerve racking. Thank you to everyone for voting!  VOTE HERE

Tuesday, August 24, 2010

Happy Heavenly Birthday to Grandpa

Grandpa Richard
Gary's full name is Gary Richard after his late Grandfather.  Today would have been his 60th birthday.  Sending birthday balloons to you Grandpa.  We miss you.

Monday, August 23, 2010

1 More Week of Taper, Then Even Lower

We had a great weekend.  Uncle Bill took Gary to see Toy Story 3 on Friday.  He liked it.  He is not a big movie theater fan but when Mommie's not there, Uncle Bill can get him to do just about anything.  Mommie went shopping with Auntie.  Dad, brother, and sister went down to OR to celebrate with there big brothers birthday.  So we were all separated for the evening.  Everyone went to bed late.  Gary woke up around midnight however to tell me he went to see Toy Story.  I made sure I had Buzz and Woody laying next to him when he woke up.  We woke up early the next morning for run a 8k in the next 2 towns over.  This was the kids first race.  They did well.  I was proud of them.  It was completely crazy getting there.  Daddy had to go rescue Uncle Bill in the opposite direction because of locked keys in his car so they were late.  This meant I had to start the race with the kids at there pace.  We met up at mile 1 so Mom could take off running.  It was fun.  Gary rode in the stroller with Dad pushing.  I will update my running blog later.

Picture left to right:  McGuire, Elexis, Kapri, Gary, and Preston.
Running for Cure JM
(I officially named it the Cure JM Tour)

Gary Update and  The Great Taper

We are right in the middle of rocking 1/2 ml and 1 ml back and forth each day.  So 1/2 ml one day, full ml the next and then back to 1/2ml.  It's going ok.  He looks funny.   Not clear like he was before we started the great taper.  His face looks funny to me.  Like swollen and blotchy I guess.  It could be getting up early that morning.  He also started a new med for his molluscum.  That caused diarrhea.  So we cut the dose in half.  He overall has been in a kind of bad mood.  Yesterday I gave him his med's on an empty stomach.  One your are suppose to, one you are not.  He ended up throwing them up all over the car.  He looked so pale the rest of the day.  He was still running around though so we just kept our eye on him.  He was pretty white after that vomit.  I had been giving the new medicine spaced at least an hour before or after the cell cept.  I forgot to do that.  Woooops.    The calcinosis I decided to stop looking for it.  I will monitor it but I won't go searching for it.  It drives me crazy.  

Thursday, August 19, 2010

In Memory of Cole Flack

Please vote so another does not fly away from us too soon.

I'm better......

So I have calmed down a bit about the whole calcinosis  issue.  I had posted about it on the Cure JM board, then took it down for reasons I don't know.  Yes,  I can be bratty.  No one responded to it so I figured no one had anything to say about it.   I know.  This is me being transparent and honest.  I have the support on my blog so when Summer, Jenn, and Kaylee dropped me a note, I felt better.  Then someone on the board message me about the post, I felt even better.  Thank you Catherine.  She explained her son has calcinosis as well and what he has been going thru.  I suppose that is all I wanted.  Then the best sentence I read from Shari, calcinosis can resolve on its own.  So that is good and I will cling to it.

CURE JM is in second place.  We need every vote everyday.  Please keep voting.   Yay!!!

Special prayers to a family who lost there son to JDM last night.  My sincerest condolences.  He was 15.  

Saturday, August 14, 2010

Back in the News: Calcinosis

That was quick.  I just wrote about this Wednesday.  As reported on Wednesday the doctor was pretty certain he had some calcinosis.  Right above his hip and across his chest.  I am a "outta sight outta mind" kind of person.  I know, that is a weird juvenile stance to take on it but simple.  Yesterday we went to help Auntie and Uncle paint there house.   Gary paints in his underpants to avoid getting paint on his clothes.  There it was, on his chest.  You can seen a "lump" coming through on his chest.  It is colorless, but most definitely raised.  The best part is it wasn't there the on Tuesday when we were at the doctor.  I stated that I didn't mind it as long as it didn't come thru the skin.  I did want to cry for second when I saw it.  But I don't want to get the kids upset, the family, or Gary.  So I just pushed it off in my mind.  Just paint.  We will just have to deal with it.  I wasn't feeling to great after his infusion on Tuesday either.  His face and eyes were swollen and red.  But that finally started to subside. He is the best little boy.  He is fun loving.  Going thru the "I hate you" stages.  It drives the other kids crazy.  But he knows it pushes buttons.  He loves to throw out a "I hate you" with a delightful tone.  I am not going to discipline him for it because I know he will grow out of it.  Some Mom's wouldn't agree.  That's ok.  There are things other Mom's do that I don't agree with.   Oh well. : )   Think I will go run these emotions out.

My friend Summer is about to start Rituxan.   It is the same medicine Gary started.  Sending prayers your way Summer.  

Wednesday, August 11, 2010

And the great taper continues.......

Last month my cheer leading pom poms were high in the air.  This month I have brought them down to my sides.  There still twirling, just at a different level.

Yesterday was as expected.  Completely draining.  I knew it would be.  I ran ten miles the night before because I knew I would not be able to get my run in yesterday.  BLOG JUMP HERE   : )

Gary cried when we turned onto 405.  Gary cried when we turn into Children's parking lot.  He went on and on how he didn't want to talk or get a shot.  Like a broken record he repeated that over and over again.  How he didn't want to talk to anyone.

We started out at the dermatologist.  We "talked" *smiles* about what treatment we were going to use for the molluscum.  There is the standard "freezing" off but its too uncomfortable.  We are going to try a medication they use for adult gential warts.  ************I stare blankly and instantly think, I am so not picking up that prescription***************.   Of course Children's Pharmacy doesn't fill the medication.   He also added another tummy protector.  I guess they have had success with it having an effect on the molluscum.  I was surprised rheumatology gave the ok on it since he is already on a tummy protector.  Putting him on two at the same time.  They explained it works differently then the other does but I was concerned it interfering with his JDM meds.  But we got the A-ok.   So who wants to pick up that medicine for me?  No worries, I will just have the love of my life pick it up.  He doesn't need to know what its for : )  I will inform him afterwards.  LOL     Pure Evil.  I know.   "Honey make sure you ask for consult from the pharmacists, this is a new medicine."      I will pick it up.  I will just use my loud voice.  "Before I turn this in I need you to know this is not for ME!" , "Before I pay for this,  I need you to know this is not for ME!".   This is fun stuff people.

After the dermatologist we headed over to the infusion clinic.  They were busy yesterday.  It was loud in there.  IV went in no problem.  Well, the usual.   But at least it was a one poke day.  The benadryl went in his body a little rough this time.  It stung has they ran it in the IV.  He acted like it was acid or something.  We kept the cool rags on his arm until he zonked out.  Our nurse was great.  On top of it.  Our rheumatologist came down to the infusion center to chat.  She asked if we could come up to clinic when we were done.  I was surprised how well Gary did with all that.  He gets a little uncooperative.  Plus its the end of our doctors day so she I am sure has had enough herself.  I told her he is still doing good.  I am not as happy as I was last month but realize that his body will need to adjust to the tapering.  I told her swelling seems to be coming in here and there.  One minute he will look fine the next red and swollen.  The nurse had made a comment to her that he looked red and rashy when he got to the infusion clinic earlier that morning.  I told her the dermatologist nurse also commented on that.  "He looks uncomfortable."   The doctor explained she thinks that with the disease it has made his blood vessels and capillaries "leaky".  She said that she has noticed that with her other JDM kids.  Interesting theory.  I said, "as oppose to active disease?".    She said yes.  Hmmmmm.   and more hmmmmmm's.  I mean anything is possible.  I just not sure if I completely agree.  Despite a little rash, his labs are holding steady.  She paused and looked at me.  I looked at her.   "Feel like being brave."  I told her, "only if you are".  So we are continuing the great taper.  I gulp this time.  For the next two weeks we will go 1ml then 1/2 ml then back 1 ml.  If all goes well, after that two weeks we will go to 1 mL every other day.  Plug my nose, here goes the cold water.  Jump in.

Just in case you forgot what calcinosis, it is calcium deposits.  Here is a link to a recent a report that I barely understand but its fun to try.  HERE  She felt the area's I had mentioned I thought I felt a little something.  Right above his hip and across his chest.  She stated she was pretty certain that is was indeed calcinosis.  If you were to tell me that he would develop calcinosis 6 months ago, I would have freaked out.  But this whole process has taken me to a different place.  He can have calcinosis.  That's fine.  As long as it stays where its at and goes away on its own then I am fine with that.  Oh yeah, one more condition, it doesn't hurt him.  It makes sense though.  Reports say that calcinosis can occur as the bodies reaction to damage or previously inflammed tissue or muscle.  We use to lift Gary by placing our arm across his chest, instead of lifting him up under his arms because that was damaging the skin under there.  Plus the reflex muscles to bring his body with  him when you lifted him was gone so it really propelled that damage.  Placing our arm or hand across his chest  was damaging that tissue as well.   As long as those calcium deposits stay where they are at.

At this Point
This morning Gary has been making frequent potty trips.  Complaining of not feeling well.  Then eats a peanut butter and jelly sandwich.  Three year olds.  Unstoppable.  We are off to try and school shop.  May need to wait to make sure he is up to it.

Saturday, August 7, 2010

Aug. 10th is next infusion

We have settled in to the 1 ml steroid dose.  How's he doing?  Good.  On my scale of:

Not Good

I will be able to report that there has been some slow down and minor changes.  Last month when we were in I was practically doing back flips in clinic so happy with what I was feeling and what I was seeing.  He has slowed down a little bit.  I noticed changes in some muscle strength.  When I put him into his car seat yesterday, I noticed that reflex that went missing from before is trying to come back.  Same with lifting him onto the potty.  I also noticed he was drinking something and it took a few swallows to clear.  But that was one time.  Even I get that from time to time.  He has asked me to carry him quite a bit.  He wasn't doing that before.  But we have been walking quite far so I don't know.  I don't like to "I don't know" myself.  I did all last year.  Until they started the Rituxan, and all that went away, it confirmed I did know!  It wasn't just being a three year old or my imagination or a fluke thing.  So we will see on Tuesday how his labs are and what they say.  

Where did it go?
Summer is almost gone.  The kids go back to school on Aug. 30th.  I can't believe it.  It just went away.  I hope in the next couple weeks we can get a camping trip in.  I have to get the kids back to there regular sleeping patterns.  Right now they are waaaayyyyy off.  Going to bed really late, and waking up really late.  I am going to try and get all the school business done like supplies and clothes.  That way they can focus on what summer they have left.  One of our new favorite things to do is go down to the river and take a dip.  Ever dipped in a river on a hot summer evening.  MUST TRY.  It is fabulous.  Sure it hurts at first because its really cold.  But when you get out of the water!   And its all over with!  AAAhhhhhhh.  Your body tenses, then lets go when its all over with.  Plus, your cooled down.  The kids love it.  I did it after a  5 mile run.  Really really nice!

We are still in the running for the $250,000 grant if you haven't heard.  Please Vote. Thank you to all my friends and family who have faithfully voted thru the month of July.  I appreciate it so much.  VOTE
The Cure JM concert is also coming up quickly!  I am really excited.  It is September 11th, 2010 in Hillsboro, OR.  Features Blake Lewis and Jessica Lerner.  We had a wonderful time last year.  Email me at roberika2@msn.com if you think you want to come.  We have a few families that are thinking about it.  I will let you know what our plans are, when I know what they are : )  The link to the concert is on the right>>>>

We have a jammed packed weekend in store.  Today the boys are going to the Seahawks training camp.  Why do we get such a wonderful opportunity?  We are blessed with loving, caring, not to be taken advantage of FRIENDS.  Thank you K. Patterson for the tickets.  I am staying back to let all the boys in the family go.  Want to know why?  Because tomorrow I have tickets to the hydros.  I won them on facebook.  I made up a poem, in seconds mind you.  It sounded like something a first grader would right but HEY I won :).  I have never been so that is what I wanted to do.  Yesterday was a free day so I took the kids down at the end of the day.  It was very cool!  I will post pictures later.

This week a friend lost her sister.  I use to work for the family at there restaurant.  The news was shocking.  I would often see them in the restaurant with her Dad having dinner or lunch.  I offer my condolences to the Potts family.  In loving memory of Therese.  It really wakes you up.  Makes you want to live life to the fullest. EVERYDAY.  

My brother-in-law is home and being watch close.  So is our house guests.  My regards to Whitney the baby basset hound.  That's it.  She only get my regards.  LOL   

Monday, August 2, 2010

A Letter from a Doctor

This is a letter posted by a doctor that someone shared on the CureJM board.  I wanted to shared.  It is kind of touching.  A little cocky.  It's a perspective at best.  Acknowledged.  But it lites my fire and makes me shake my head in equal frustration this doctor is claiming.  Hmmm.

Dear Patients:
You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.  How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?  How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?  How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?
I can’t imagine.
But I do bring something to the table that you may not know.  I do have information that you can’t really understand because of your unique perspective, your battered world.  There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you.  It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past.  It may not seem important, but trust me, it is.
You scare doctors.
No, I am not talking about the fear of disease, pain, or death.  I am not talking about doctors being afraid of the limits of their knowledge.  I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.
But chronic unsolvable disease stands square in our way.  You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.
And since this is the perspective you have when you see doctors, your view of them is quite different.  You see us getting frustrated.  You see us when we feel like giving up.  When we take care of you, we have to leave behind the illusion of control, of power over disease.  We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.  You are the rock that proves how easily the ship can be sunk.  So your view of doctors is quite different.
Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do.  Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain -  is something most of us don’t regularly encounter.  It’s something most of us try to avoid.  So you possess deep understanding of something that many doctors don’t possess.  Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.  It’s like a parent’s knowledge of their child versus that of a pediatrician.  They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.
So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have.  You see why you scare doctors?  It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them.  I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand.  You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.
So let me be so bold as to give you advice on dealing with doctors.  There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:
  1. Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control.  All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.  That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start.  Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
  2. Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease.  These doctors should be avoided.  But most of us are not like that; we really want to help people and try to treat them well.  But we have worked very hard to earn our position; it was not bestowed by fiat or family tree.  Just as you want to be listened to, so do we.
  3. Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust.  Don’t expect a new doctor to figure things out quickly.  It takes me years of repeated visits to really understand many of my chronic disease patients.  The best care happens when a doctor understands the patient and the patient understands the doctor.  This can only happen over time.  Heck, I struggle even seeing the chronically sick patients for other doctors in my practice.  There is something very powerful in having understanding built over time.
  4. Use the ER only when absolutely needed – Emergency room physicians will always struggle with you.  Just expect that.  Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home.  They might not fix your pain, and certainly won’t try to fully understand you.  That’s not their job.  They went into their specialty to fix problems quickly and move on, not manage chronic disease.  The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
  5. Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address.  I can’t work that way, and I don’t think many doctors can.  Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made.  It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems.  It helps me to prioritize with them.
  6. Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you.  Some docs are not cut out for chronic disease, while some of us like the long-term relationship.  Don’t feel you have to put up with docs who don’t listen or minimize your problems.  At the minimum, you should be able to find a doctor who doesn’t totally suck.
  7. Forgive us – Sometimes I forget about important things in my patients’ lives.  Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well.  Sometimes I avoid people because I don’t want to admit my limitations.  Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded.  Well, maybe I mind it a little.
You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living.  I hope this helps, and I really hope you get the help you need.  It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.
Dr. Rob