Sunday, January 30, 2011

Since I get asked a lot about Raynaud's

One problem that can go hand in hand with several different diseases that are covered under the spectrum of arthritis is Raynaud's Phenomenon. Raynaud's is an over-reaction to the cold. The blood vessels constrict from simple things like being in air conditioning or holding a cold glass of water. The classic signs are the color draining out of the affected hand (or foot, nose, or ear) which turns the area bright white, then turning purple or blue as blood starts to fill in, then red as the blood comes rushing back in. It is painful, prickly, tingly, and causes numbness.  There is primary Raynaud’s, in which case there are no other conditions, and there is secondary Raynaud’s- caused by some other disease such as Scleroderma, Mixed Connective Tissue Disease, and also found to be related somehow to Dermatomyositis.  Secondary is generally considered to be more severe than primary.   The best link that I have found to explain it is The National Heart, Lung, & Blood Institute.    Also, The Raynaud's Association  is a great place to find support and info.

 It was only one year ago this month that my daughter was suffering a great deal from her Raynaud's Phenomenon. Her doctor at the time decided that she was too young for medicine, and that we could control it by keeping her core warm. We would pack her off daily in the winter with two T-shirts, a warm long sleeved shirt, jeans, mittens, and a very heavy winter coat. One would assume that would be enough for a sunny Florida winter, but not the case for my child. It was when she developed frostbite at school that I truly began to panic. This was a life changing disease for her. No longer could my sweet little princess wear her cute little dresses and skirts that she loved so much. Instead, we were piling as much extra clothing on her as possible, but it was never enough. Her school actually made a drill based off of an idea that my hubby had. He would take a sock, fill it with rice, and microwave it for a few seconds to a minute, depending on the size of the sock. The school had several of these socks, and they placed them strategically around the school. Whenever she had a particularly bad episode, they would run for the socks. I worried daily about frostbite, and the possibility of her losing her fingers because she tried to ignore it. The springtime wasn't as severe, but still she continued to have many episodes even when it was 85F outside. And still her doctor didn't think that she needed medication. Our new doctors gave her a prescription for a Calcium Channel Blocker just before the end of December. Even as a child that doesn't like to take medicines, she was afraid of what a cold winter would bring, and she requested it. I can't say that she hasn't had an episode since, but she has certainly had far less. In fact, I have only seen one. Today she can walk around the house in a nightgown or skirt without fear. We can go outside on a cold day without fearing the worst. Yes, she still gets much colder than other people, and she can’t warm back up that well, but it isn’t like it was.  For that, I am very grateful. Her current doctors call her case of Raynaud's "significant". They could tell from a mile away that she had problems with it. Medication was the best decision that we could have made for her. Perhaps it wouldn't be the best course for everyone, but for us it has made a huge mountain look like a small hill.

With this time of year also comes bronchitis.  I thought that we had her on enough preventatives to keep her under control, but I suppose that wasn’t a very realistic thought.  She went to the doctor on Wednesday, but we plan on taking her back tomorrow.  To complicate matters even more, she is due for her Remicade infusion on Tuesday!  Remicade is an immune suppressor, so if she still has an infection it would be very detrimental.  Since we have to drive 2 hours away for it… I’d like her pedi to clear her.  This is her current medication list, with the bronchitis meds being the first 6.

Emily’s current meds as of January 30, 2011
Zithromyacin-  200MGs once daily
Singulair- 5MGs daily
Flovent-  44mcgs twice daily
Ventolin- Every 4-6 hours
Veramyst-  One squirt each nostril nightly
Benadryl- 1.5 tsps (On request for congestion & cough at night)
Prednisolone- Take 18MG in the morning
Prilosec (Omeprazole) ONE capsule once daily
Meloxicam-  5 MLS  (1 tsp) nightly
Nifedipine ER 30MG- One pill once daily
Xyzal- 5MG once nightly
Methotrexate- .5 Sub-Q once weekly
Leucovorin- 1 pill weekly 24 hours after MTX
Miralax- ½ Cap nightly
IV Infusions:
Remicade- Once monthly
Solu-Medrol- Once Monthly

17 meds.  Now doesn’t that look like a good time?  Poor kid takes more medicine in than food or drink, I think.  This is what having an autoimmune disease does.  And remember folks- she’s only 9.  I'll post tomorrow after work about what her pedi says, or Tuesday after her appointment if she is cleared.  Keep us in your prayers!

Monday, January 17, 2011

Lots of things to point your attention to!

I have had a lot of little ups & downs this weekend.  I learned a neat little fact.  Did you know that "the incidence of Juvenile Dermatomyositis in the United States is approximately 3 in one MILLION children per year"???  She can't catch a break but she can develop all sorts of rare diseases!!!

The more I read from my books & compare to Emily's previous lab reports, the more amazed I am at how long the Juvenile Dermatomyositis has likely been a factor.   One thing that we have never been able to make any sense of I think I have figured out.  Before Emily was diagnosed with JA, our pediatrician discovered that her liver enzymes were elevated.  All summer and into the next school year we went for labwork every six weeks.  Her enzymes continued to fluctuate over the past few years between normal & high.  We had attributed some of this to Methotrexate use.  Well, I discovered tonight that those same liver tests are the ones that tell when your muscle enzymes are elevated, as in the case with JDM!  No one could have known back then, and she didn't show signs of JDM until this April., so I thought.  It is likely back in 2007 her elevated counts were due to Mixed Connective Tissue Disease.  MCTD comes with its own muscle inflammation similar to DM without actually being it fully.  (Disease features)  Her labs from this March were really high.  Like, someone should have realized Houston!  We have a problem!  Especially since April started the downward spiral.. the 3 weeks in a 2 month period where she couldn't walk.  However, since  the liver enzymes could have been due to MTX, I'll let that one go.  For now.  I'd like to focus tonight on information.

I have found many things this week that I find very handy!  The first is from the Arthritis Foundation's website.  This link here is the 100+ diseases that are covered under the arthritis umbrella.  MCTD, Raynaud's, Dermatomyositis are all included.  Yes, really!  For those of us that are unlucky enough to have to deal with JDM, we are blessed to have the Cure JM! team.  Their site is very informative, and run by all volunteers.  This non-profit was made my families that had children & grandchildren suffering from JDM.  One amazing mom recently wrote a case study on JDM.  I printed out a copy tonight to enclose with the letter that I send to our former rheumy's hospital affiliate.  One of the books that I have been referring to lately  was written by a few doctors, but also one of the founders of Cure JM!  How did I recognize the name?  She's on one of my Facebook boards.  Another mom, trying hard to help her daughter take her meds on time & still try to have a "normal" life, invented a really cool pill holder.

Of course, it's not just about JDM.   Emily has 5 different types of arthritis.  The Arthritis Foundation has done a LOT of amazing things to help find a cure, treat, & prevent arthritis, but also to send children affected by these terrible chronic conditions to camp, as well as the Juvenile Arthritis Conference.  (You can make donations to the Arthritis Foundation via my personal page for the walk in our area.  Now there's another non-profit sweeping the nation.  The awesome thing about them is that they are fighting not just for awareness... they are fighting to change the way that people view arthritis!  I had posted their link days ago, but I'm really pretty excited about them, so I had to do it again.  My awareness ribbon on Facebook was a blue & red ribbon.  One side for arthritis, one side for Raynaud's.  My verbage?  "Kids get arthritis, too!  Autoimmune & arthritis awareness!"  The key to changing people's minds is by teaching them that it is  an AUTOIMMUNE DISEASE!!!   I'm so happy that someone else sees it the way that I do!

And finally... I leave you with a story.  Not my story, but a story that has made a huge impact on everyone that reads it.  This is the story of Jennifer Schott.  Jennifer was diagnosed  when she was only about two, and she passed away when she was 26.  Without research, without new scientific advances in medications, this would likely be similar to the life that my daughter would have, along with the other 300,000 kids affected by one form or another of arthritis. 


Saturday, January 15, 2011

Things that I wish I had known in 2008

Today I got the books that I have been waiting for!  I haven't started "Myositis and You: A guide to Juvenile Dermatomyositis for Patients, Families & Healthcare Providers" yet.  The second book, "A Parent's Guide to Rheumatic Diseases in Children" (written by Thomas J.A. Lehman, M.D.)  had some other things that I wanted to focus on before I got completely absorbed in the myositis aspect.  I have spent many countless hours researching different diseases that affect Emily, trying to figure out what applies and what doesn't, what to look for, etc.  This "Parent's Guide" had a more detailed section on Mixed Connective Tissue Disease than I had seen before, including a section on MCTD with DM.  I settled down figuring that it would be all news that I've read already, but hoping to glean a little something new.

Terms to know first before moving on:  ANA is the AutoNeuclear Antibody test.  They take your blood, they look for a pattern, & then they keep diluting until they no longer see the pattern. The dilution is how they get the titer.  The more times they dilute and still see the pattern, that is how high the titer is.    The RNP is the test for MCTD.  I'm not sure what the RO is.

The first thing that hit me was in the very first paragraph.  I realized that I had actually read it before- it just hadn't sunk in.  It says:  "Children with MCTD are ANA positive like children with SLE (systemic Lupus) but typically have high titers of antibodies to RNP as well."  Three paragraphs down is "A high-titer, speckled-pattern ANA is characteristic of MCTD.  When the ANA subtypes are checked, children with MCTD are usually RO+, RNP+ & Sm-.  Because these children are often RF+, they may be referred for juvenile arthritis."  Ok, Rheumy #1 first saw her knowing that she was RF+.  Said rheumy knew that she had a high titer speckled ANA+ result in April 2008.  She already had Raynaud's showing up then, which is a classic symptom, followed by Scleroderma tightness of the skin.  And yet, he never, ever checked for the RNP or even said MCTD until this past June. This makes me a little angry.  Had I known that she had MCTD, I'd have researched it.  Had I researched it, when her legs first started hurting I'd have looked into it more.  She couldn't really seem to tell me where it was hurting from.  I suspected it may be muscles, but not for a while & that didn't make sense. 

What else hit me was when I read how children present.  Apparently, most kids with MCTD don't get JDM.  That I knew before, and if I remember right, the actual statistic is something like only 5% of the healthy population gets JDM, and only 5% of the MCTD population (which is almost as tiny!) gets JDM.  I guess usually most kids get the features, not the full disease.  This had me pondering as well.  So, I start looking at typical JDM onset.  There are 2 groups.  Those that are "unicyclic or monocyclic", who have a gradula onset and progression of the muscle weakness & rash.  And then there are polycylic.  These kids may have the same start as the uni kids, but they have the hands more affected, the nail folds & capillary abnormalities.  She's a poly group.  Just as rare is her start- "A small percentage of cases begin with dramatic fever, rash, elevated muscle enzymes, & profound weakness".  Rheumy #1 first said "Hmmm, looks like a little myositis may be going on".  Until I asked for oral steroids to control inflammation.  Then all of the sudden it was "I really feel that she just has a case of strep.  I know you just came from your pedi, but I think you need to take her back there in 2 days and have them run a culture".  BS!!!!!  I KNEW the fever was from it!  When you've been through enough stuff like this, you may not have any concrete proof, but you KNOW if it's another happy autoimmune disease finding a new home or it's just bronchitis.  I knew that when I mentioned fever he would tell me to take her to our pedi.  That's why I went to them first!  UGH!  This book is bringing all of that anger back again. 

The last thing that got me?  When it said that children with significant Raynaud's need to keep it under control, and can easily do so with calcium channel blockers.  I specifically asked Rheumy #1 for them, and was told to "let's wait and see".  I may have to buy another copy of this book and send it to him.  He obviously has a lot to learn.  Yes, I will let go of the anger again soon.  This just made it fresh all over.

Little side note- When I changed my blog address the other night I kinda hoped that it would auto-update in Networked Blogs, but not so much.  Just an FYI to any of you bloggers that may be considering a change- you have to pretty much start everything over.  UGH!  I'm a little bummed, but I know that this is a safer option. 

When I started blogging, I never intended to have anyone actually read it.  I didn't take a lot of safeguards, and so I used my last name.  I try hard not to complain in real life, and I know that I am very blessed despite all of the turmoil around me (like in the post I put up last night!).  I wanted an arena to vent, to let it all out.  Damn it, it sucks that my little one has to go through so much.  It's so unfair to her, and it makes me sad.  But I also try to  stop and smell the roses every day, take comfort that there's always something better waiting around the corner.  I feel like this whole life is just a test; once it's over you move on to your real life, like it or not.  But I also think that it's healthy to vent.  Through writing I can think things through.  Maybe someone else out there will understand how it feels to be filled with so much joy & happiness, yet so much sadness at the same time.  My own life- excluding everyone around me- is really pretty lovely.  I have fun at work & enjoy my co-workers for the most part, I have a happy household, children & a husband that I actually like as well as love, & my health isn't bad.  I don't have a lot of wants or needs, so I'm good there.  I have all of my needs met.  Who can ask for more?  And then I look at how Em suffers, how Kevin will be suffering.......  Joy & sorrow.  I feel so alive!

Oh!  One last thing!  There's a new Non-profit group out there dedicated to raising awareness for AUTOIMMUNE ARTHRITIS!!!  This is very exciting!  Several of us had recently switched more to this terminology because people don't understand.  Autoimmune is when the immune system attacks itself.  Surely that doesn't happen by Grandma playing too much shuffleboard!  While I love Grandma and respect her degeneration from old age, her body is falling apart- not attacking itself.  I'm sure that most people would agree that is an accurate statement.  When your immune system (you know- the one that keeps you from getting sick) decides to rebel, you really never know what's going to happen, but I can guarantee it won't be a happy party.  Just sayin'.  Here's the new group!  

The "Buckle Me Up!"International Autoimmune Arthritis Movement

Friday, January 14, 2011

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...

Friday, January 7, 2011

So much better than expected!

Successful infusion with only one poke!  Thank God!

We were both so worried.  The mood was very somber as we made the two hour drive to the hospital.  It had only been two weeks since we last attempted her medication- and failed to find a good vein.  She was terrified.  I was worried as well.  They had told us last time that many of the children that they see who are on high doses of steroids are too swollen to find a vein.  They said that many times they need to have a port.  A port is generally put in as a more permanent solution through a medical procedure.  This way, when the patient goes in for blood work or infusions they don't have to get poked and prodded until a vein is found.  It presents its share of risks.  Infection, for one.  They don't always work.  Anyway, I was very worried that they wouldn't be able to find a vein again, and the talk would turn to ports.  The hospital had called the day before the appointment to confirm.  Since I was already worried myself and dreading the trip, I asked if a nurse named Jason would be there.  After the other nurses have all tried- and failed- to find a vein, the go look for him.  They assured me that he works Monday-Friday.  Thank God!  I told them how scared she was to go, and I suggested we have him try first.  I was hoping that they wouldn't be hurt or offended by this.  I really like and appreciate all of them.  However, it only takes one bad experience to cause trauma!

We got there quite early!  The waiting room was empty, but they warned me that the infusion room was on a wait.  That's ok.  We plan the whole day to be dedicated to her treatment when we go.  They had her vitals checked and they sent us into a regular room to wait.  I had just started to put down our stuff when we were called back!  They said that they would start her needle in the room that they never actually use because Jason was hanging out in there.  Thank GOD!!!  After some tears on her part and careful consideration on his part, a vein was found!  Unfortunately, he found it in a valve so they were only able to collect one vial of the 5 or 6 that they wanted, but it's more than they got last time.  With that, they can at least check her liver enzymes, and her white cell count to make sure that the Methotrexate injections aren't causing a toxic reaction.  It's weird when it's against a valve- it comes out all bubbly and foamy.  I was a little freaked out seeing that, though I should be used to it.  They tried again later to collect some blood, after the infusion but without poking her again!  It failed :(  They were happy that they got some of it.  Trying to get it later was a smart move.  It ended up blowing the vein.  If they had attempted before the infusion and it had blown, that would have meant another poke.  When she gets there, after the needle goes in, she's given Tylenol first by mouth, followed by Benadryl, because Remicade can cause headaches, fever, chills and other reactions.   Next comes Salu-Medrol.  In her case this is a main medicine for the Dermatomyositis.  This is also often given to Juvenile Arthritis patients to prevent flare-ups and decrease inflammation.  Last comes Remicade for the arthritis, but it's also third line for Dermatomyositis.  We're usually there from noon or one to around 5 P.M.

She wasn't on the schedule to see the doctor, which I was a little sad about.  Dr. M  popped by anyway just to say hello.  We chatted for a minute or two, and she went off to see if we were on the schedule.  I explained how thrilled I was to have Emily on the Procardia (high-blood pressure medicine) for the Raynaud's.  It has certainly helped!  I told her about Emily laughing more and feeling better.  She said that it may be because of the steroids truly kicking in, too.  That may be!  I forget to tell her that her physical therapist has had her jumping at the last 2 sessions!  Her last session was an hour to try to make up for not being there while we were in Gainesville.  She was tired at the end but she did it!  I did manage to remember to tell the nurse practitioner when she came by to say hello.  Heather is really cool!    I remembered to tell her that despite the Procardia, Emily just that morning had a Raynaud's flare, but it has definitely helped a LOT.  Also, this time her blood pressure was WAY down.  Last time it was 153/ something.  This time through several different readings it averaged around 113/85.  Sooooooo much better!!!  She also said that since it was prescribed now while her blood pressure is high, it will adjust with her so when she's off of the steroids it will still be ok to keep going despite normal blood pressure.  That was a relief.  I had wondered about that.  She had said that even though she didn't have an appointment, they didn't want to leave us hanging with no Prednisone decrease, & that while the steroid doses are high, the decreases are more frequent.  The lower the dosage goes, the less they decrease.  So, this week we can cut back from 8 mls last week to 7 mls for the next two weeks, then to 6 mls for the two weeks after that.  Each ml is 3 MGs.  So, by February she will have been brought from 42MGs at the beginning to 18MGs!   The way that this works is they start the steroid high and then lower it enough to wean off while adding in Methotrexate and increasing while the steroid is decreased.  She's obviously doing much better now.

There are other issues.  There always are, it seems.  One of the worst things about the Dermatomyositis is the extreme fatigue.  It causes so much muscle weakness and degeneration.  It takes a long time to build the muscles back up, and since it takes so long to get the disease into remission, the muscles have plenty of time to deteriorate.  Her rash is getting better and better but it isn't totally gone yet.  It's so close that I can almost see it being pretty soon in the future, but we're not there yet.  As well as she's doing, it certainly isn't comparable to healthy children.  She can walk, she will push herself to walk all day at school, but she's exhausted.  She can do a staircase, but it takes her a LONG time and she feels it for days after.  She can't walk more than a few minutes without fatigue, and so we bring her wheelchair just about everywhere we go.  If we go to the mall it comes with us.  We take it to the hospital because it's a long walk from the van to the doctor's office & infusion room.  She can't keep up easily.  After the infusion she's exhausted!  The Benadryl is partially to blame, the drive, & quite possibly the Remicade itself.  It will take a while for the disease to go into remission so that she can build the muscles back up, but eventually she will.  With the Mixed Connective Tissue Disease in the picture, she will likely have this happen again, but I have heard rumor that if it does it shouldn't be as bad again.  I have 2 books on order, so hopefully I will find out more very soon.  It's so rare that even Books A Million has no listing for "Myositis and You: A Guide to Juvenile Dermatomyositis for Patients, Families, and Healthcare Provider".  One library in my STATE has a copy, and only 11 nationwide.  Wow.  The other book sounds equally as stimulating-  "A Parent's Guide to Rheumatic Disease in Children" by Thomas J.A. Lehman M.D.  He's the same doctor that wrote "When It's Not Just Growing Pains".  That was an excellent read!  

At the same time that Emily is finally starting to recover, many other children are currently getting worse.  Just our Florida bunch alone!  We have one child whose diagnosis was changed to Systemic disease this week.  That can be a terrifying, overwhelming prospect.  I'm not sure how old that little one is, but I believe she's only 4 or 5.  Also, there are 2 little ones that are suffering with severe abdominal problems.  They both had colonoscopies this week.  One shows many ulcers.  They are waiting on a CT scan tomorrow to find out more, but the thought is IBD or Chron's Disease.  The other family is forced to wait for a week.  We have another child that they are trying to rule out Lymphoma on.  But we all have to accept that since these diseases are autoimmune, often more autoimmune issues will pop up.  (Sigh)  Really, you just never know what to expect with these things.  Crazy stuff happens, but until you are "seasoned" with this, you just don't expect it.  Even when you expect it, it still never fails to amaze.  Like not being able to wear shoes without socks.  Or getting frostbite inside of school in Florida.  (The arctic I could understand...)  Many of these kids have Chron's, Colitis, severe allergies, fibromyalgia, etc.  

And then there are the medications...  You see, all of these medications come with side effects.  These kids are on some heavy meds.  Prednisone can cause cataracts, brittle bones, organ failure & eventual death if a close eye is not kept.  Remicade & Enbrel can cause Leukemia, and a whole host of other problems.  One of the children with the colonoscopy is almost blind.  No, he wasn't born this way.  His arthritis wasn't controlled well enough, his medicine dosage wasn't correct, and the steroids that he was on caused cataracts.  He's 5.  How is that fair?  Yet, he's a very sweet, funny, smart little guy.  It's so sad what these children go through.  They are all such sweet, thoughtful, wonderful children.  I truly believe that these kids are sweeter than most other children, more thoughtful because of all that they have to go through.  They are little wise people.  Little kids should be allowed to be just that.    We have to find a cure, we have to find a way.  Please, think on that.  So few take arthritis seriously.

Monday, January 3, 2011

Happy New Year!!!

I'm sure I'm not the only one happy to have 2010 gone.  I read so many different people's blogs that, while our year was truly ridiculous, I know that many, many people have had an even more difficult time.  My heart goes out to those people.  Crazy though my life may be, at least no one in my life has a terminal disease.  For that I am extremely grateful, and blessed.  And then there are the blessings that come when you are down and have been kicked  a few times.  They are generally so unexpected, so surprising and at just the right time that you just want to melt.

January started innocently enough with nothing indicating total insanity that I can recall.  Actually, I don't remember the year being too bad until April. We were finally able to buy a new TV for February.  That was good.  March... March changed my life for the better.  It was March that I met Tony W, Courtney A & Pam.
 This opened up a whole new chapter of being able to help others, meet other families going through the same things, connect, and make new friends.  This was like my light at the end of the tunnel.  Suddenly, there were people that understood, that had great advice & compassion, people I could learn from and teach!  And it made me realize that my dream of helping newly diagnosed families wasn't out of reach.  All that I had needed was a forum and, well..... there it was.

Then April.  During spring break is when suddenly Emily was unable to walk for about a week.  All seemed ok after;  we figured it was a typical flare and it would go away.  This was also around the time that my illusions that she would stay on Enbrel forever and ever and life would be easy for her kind of crashed.  Kind of in the way that pregnant mothers-to-be say "Oh, my child will never cry", my thinking was "No, my child will never flare."  Oh, to be so naive again!  Of course, back in April I thought she had "just" arthritis, Raynaud's & Scleroderma.  (Like that wasn't bad enough all on its own!)  She never fully recovered from this "flare", but she was mostly walking.  Her endurance went down more & more.

May kept the downward spiral trend going.  That is when Kevin lost his job.  Scary blessing, really.  I had prayed for it, actually.  He hated his job.  He was miserable.  It needed to happen.  Not the best economy for it, but ok.  June was Cub Scout camp.  That was fun, yet challenging.  June also brought news that Kevin's thyroid doctor was worried about potentially dangerous cells.  As a precaution, she wanted Kevin to stop taking the one medicine that controlled all of the hormones in his body for a month and go in for a bone scan.  He felt like a slug for the next almost 2 months.

July was the JA Conference!!!  This was a dream come true for me.  I cannot tell you how much time I have poured in to researching her different conditions, all arthritis-related.  I am sure that it is days by this point.  To say that I was excited could be the understatement of the year.  That was an awesome adventure for Emily & I!  She missed her Boy too much to truly enjoy herself, and she was having a rough time, but it was still fun!  It was great connecting with other parents that understood things.

August brought the new school year.  That started off very well, until September.  By September I knew that we had to make some medication changes fast.  If we hadn't changed her meds then we would never have seen it.  By the end of September Emily could barely walk.  She started missing school, something that she really doesn't like to do.  October brought her doctor totally blowing us off, changing doctors to one much further away from home, but much more caring!  October brought the Juvenile Dermatomyositis (JDM) diagnosis and a 6 day hospital stay for Emily.  She was kept for an MRI, which showed muscle damage, an Upper GI, a Pulminary Function test, plenty of labs, and daily SoluMedrol IV's.  (500MG IV Steroids)  She had her first IVIg infusion, her first Remicade infusion, and she really went down hill.  She actually got worse for about a month.  She also gained 20 lbs in a month from the high steroid dosage she was sent home with, called Cushing's Syndrome. 

November brought the thyroid doctor saying, basically, "Hey!  I know I should have called you back like 2 months ago, but I think it would be a great idea for you to be confined for 3-5 days and given high-dose radiation... just in case" to me during my appointment, but about Kevin.  We devoted 80% of my appointment to planning out his treatments.  November also brought Emily going back to school (she missed almost every day in October), and feeling a little better.  Her teacher, God love her, bought Emily some shirts.  How many teachers would do that???  I was sooooo touched!  It also brought to her depression because of the Cushing's.  Trying to find ways to make her happy became a hobby for us.  We were also given a concrete diagnosis of Mixed Connective Tissue Disease, along with a prescription for a wheelchair, which our physical therapist handled for us.  (We won't see her new chair until probably February, though.)  Yes, she can walk, however she tires very quickly.  She'll push herself to keep going at school, but if we're going out she just can't walk that much.  She still has days where it's hard walk.

And then beautiful December.  December started off a bit rough because she was still so unhappy that she couldn't even come up with a Christmas list until about a week before Christmas.  By this point my family was so happy to just simply be together that no one really wanted much.  This was the first Christmas that we had absolutely no idea what to buy for anyone.  Her physical therapist at school made her a little care package for her birthday of some new clothes and fuzzy socks!  She sooooooo loves those fuzzy socks :)  Towards the end of December Em started to feel a little happier.  What a blessing!  She received a little Christmas care package from her physical therapist outside of school.  Apparently, they are allowed to elect a patient or 2 that they think has earned  it.  Her PT elected her.  Again, we were so touched.  It really makes me weepy to see how many people will try to cheer up a sad, aching little girl, just because they can.  This is why people need people.  These people have touched her life in ways that we simply couldn't.  And then came the BIG blessings, the ones that we simply couldn't believe.  First, adding a med for her Raynaud's & decreasing her Prednisone helped give Emily some happiness!  Our Secret Santa(s) that went way overboard when they didn't even have to.  On one of the worst days, when we had driven the 2.5 hours to the hospital for her infusion only to not be able to find a vein, after poking her so many times with her crying and so upset, knowing I had bronchitis but no time to be sick... that's when they came.  On the day that I really just felt like breaking down from stress and exhaustion- that's when they came.  It wasn't about food, toys, cards, etc.  It was that someone was so touched by what we were going through that they felt compelled to help.  That's what Christmas is about, & I've always known that, but I never expected to be on this end of it.  It couldn't have come at a better time.  Needless to say, Christmas was wonderful, we had a lovely time enjoying the company of our family and friends, & I got the one thing that I wanted the most.  Quite simply, I just wanted to hear my girl laugh.  REALLY laugh, like hysterically.  With her brother.  Listening to them bicker like an old married couple, like they did before Prednisone.  For once I didn't cook on Christmas.  We didn't leave the house.  It was perfect.

To leave the year behind, we went shoe shopping for the kids on New Year's Eve.  Not only did they drive me crazy, but I realized exactly what a mess I have become.  So, we're at the mall in the Disney Store.  Of course, all of my kids are as excited as they would be if we were actually at Disney.  I look up and see a sign saying "Happiest place on Earth".  I'm sure that for many people it is, but I just cried.  Yeah, I know.  Crazy, eh?  But I thought of how I just want them all to be happy, and then I thought of how happy they would all be at Disney, of Em at Disney, and how there's just no way we could do that right now.  I don't usually get upset about what we can't do, but since my whole goal in life anymore is to make my sweet little bean happy... that just did it for me.  I cried on and off almost the whole time we were in the store.  At least 20-30 minutes.   So, I am starting the new year off by finding something every day to find joy in.  To look back on every day and think of the good things, forget about the bad.  I want to count my blessings even more. 

There's someone that I love whose daughter recently blessed him with a grandchild that is now 2 months old.  The baby's father shook the baby while Mom was away.  The baby is paralyzed now on her right side, as well as brain damaged.  This makes me so sad, so angry, so heartbroken for them all.  The dad has been arrested, but my friend's family is just dying for this child.  Mom is a wreck, as is Grandpa.  He doesn't want anyone to know so I won't name him, but this little baby needs prayers.  This happened just before Christmas.  This baby never had a chance.  We all knew that Dad was a jerk, but we didn't think he was capable of something that horrendous.  Please pray for this little one.  That's one heck of a horrible way to end a year for them.  And that alone makes our year look like a piece of cake, doesn't it?  You just never know what tomorrow may bring.