It’s Invisible Illness Week

I’ll fill this one in about Miss M…her life as I see it…(she would probably do it differently, though) Some questions don’t apply to Mariella, because quite honestly, she doesn’t remember NOT having Asthma or having a belly ache.

1. The illness I live with is: Asthma and Gastroparesis

2. I was diagnosed with it in the year: Asthma-2006 (age 2) Gastroparesis-2010

3. But I had symptoms since: Asthma-2006  Gastroparesis-birth

4. The biggest adjustment I’ve had to make is: Mariella-being aware of the things she needs to be aware of-like what her breathing is like.  Also-some foods are just not good for her belly-and she needs to avoid them, even if she loves them.

5. Most people assume: That she is much younger than she is.

6. The hardest part about mornings are: Fitting everything in

7. My favorite medical TV show is: not applicable

8. A gadget I couldn’t live without is: Nebulizer machine or Oxygen monitor

9. The hardest part about nights are: sleeping nearly sitting up

10. Each day I take _2_ pills & 1 vitamins. (No comments, please) Umm can’t do this without comments Also, 2 different inhalers 3 times a day, and 1 liquid medication 3 times a day

11. Regarding alternative treatments I: don’t use them

12. If I had to choose between an invisible illness or visible I would choose: unknown

13. Regarding working and career: Sometimes it’s hard to go to school, last year, M missed 23 of 180 days

14. People would be surprised to know: that she often feels much worse than she appears to.

15. The hardest thing to accept about my new reality has been: This has literally always BEEN her reality

16. Something I never thought I could do with my illness that I did was: unknown

17. The commercials about my illness: Inhalers…it makes her excited to see them.

18. Something I really miss doing since I was diagnosed is: unknown

19. It was really hard to have to give up: Bananas

20. A new hobby I have taken up since my diagnosis is: none

21. If I could have one day of feeling normal again I would: run and play without having to stop for an inhaler or treatment

22. My illness has taught me: unknown

23. Want to know a secret? One thing people say that gets under my skin is: Mommy-”oh, I thought she was so much younger” or “why doesn’t she grow?”  If we knew…we would fix it.

24. But I love it when people: treat her like every other kid.

25. My favorite motto, scripture, quote that gets me through tough times is: Mommy-”it is what it is”

26. When someone is diagnosed I’d like to tell them: Most people get much better control than we have.  Control IS possible, it just may take a while.

27. Something that has surprised me about living with an illness is: Unknown

28. The nicest thing someone did for me when I wasn’t feeling well was:

29. I’m involved with Invisible Illness Week because: It’s important to know that not only adults suffer from invisible illnesses.

30. The fact that you read this list makes me feel: Good that others will be aware.

It’s been about a month since Mariella weaned off the steroids.

so it was time for a follow-up pulmo appointment.

she has gained weight…almost 2 pounds!!!!! I’m floored! I knew she was heavier, I didn’t know how MUCH heavier…however, she didn’t grow any…so now, we have to really watch that…we don’t want her to gain weight without growing taller. BUT…for NOW….I’m doing the happy dance that we’ve seen measurable weight gain for the first time in THREE years!!!!! (and it’s entirely possible that she’s gained weight, and will then shoot up…there’s really no way of telling, because we still don’t really know why she STOPPED growing…but measurable weight gain…YAAAAAAY)
She still looks OK, lung wise. There was a moderate decline in her lung function, and her O2 was a LITTLE low, but it wasn’t terrible. Enough that we know she can’t stay OFF controller meds…but the one we’re starting with is a non-steroidal medication.  So, she’s back on Atrovent, 3X’s a day.  (a small 5% drop in FVC, about a 10% drop in FEV1, and about a 30% drop in her small airways-which, after Xopenex, went up to her value from last month, on medication.  Each number in itself wasn’t horrible-well, except for the small airways, but all together, it calls for paying attention.)  A funny story…when I was talking about her PFT’s from admission and discharge, and I said how the Dr. said that the decline then (which was admittedly a VERY, VERY small decrease) was just due to day to day variation…the RT laughed and said…”that’s why it’s hard when you have 2 doctors…I can tell you that there is very LITTLE day to day variation in Mariella, unless she’s sick.”   At this point, we still don’t know where she’s going to stabilize, if this is where she’s going to be, if she’s going to decline more.  Our office doesn’t do peak flow for most patients, and I’m not sure what it would tell us, day to day.

I can’t tell you how nervous I was about this appointment. I can’t tell you ENOUGH how HAPPY I am that Mariella didn’t crash and burn within days of taking her off of her medications…I mean, that’s FABULOUS…but we ALL expected that to happen…and I was kind of nervous that the doctor was going to think I was absolutely CRAZY, if not suffering from Munchhausen by Proxy (or does that mean the same thing) At this point, we know she has asthma…her lung function tests prove that, the fact that she does SO MUCH better after she has a bronchodialater med…plus the fact that her function tests have declined off the medication means that she still needs them…but she might not mean she needs so MUCH…that with getting her stomach under control, her lungs aren’t taking a constant beating, and so they have been able to heal a bit…this would be AWESOME, and something I’ve been afraid to hope for.

He said he trusts my judgment about whats going on, agrees with me that she is likely a poor perceiver of her actual symptoms, and agrees that I know how far I can let her go before I step in and say “um..you need some sort of rescue…what do you need”

She will definitely be back on an inhaled steroid, at least for the fall and winter…but if we can just do that kind of med for 2 seasons and just have her on the other med for the full year…it would be awesome.

SO, that’s where we stand. I still kind of feel like I’m waiting for the other shoe to drop…and I don’t know how long I’m going to feel that way…and I feel like I’m swinging without a safety net..but I’m a little more comfortable now that we’ve got something in place. If I wasn’t seeing signs of declining lung function, I wouldn’t have been so nervous…but I WAS seeing it, and so I was getting kind of freaked out. I also feel MUCH better after talking to her pulmo HERE…though I LIKE the pulmo in Boston, she hasn’t been with us since the beginning.

A little departure from my usual drivel

So, people have been asking me about my “mommy trip” to Florida.  For those of you who DON’T know, I am a Harry Potter fanatic.  It borders on obsessive…but really, there are worse things to be obsessed about.

Rewind back to late February or early March, my friend called me up and asked if I wanted to go to “LeakyCon” with her.  LeakyCon 2011 was the second Harry Potter convention produced by the Harry Potter fan website, “The Leaky Cauldron”  You would have to have read the books to understand where the name comes from.

The Con was being held at the same time as the final installment of the film of the last book was being released.  I couldn’t imagine anything cooler than being at a Harry Potter convention at the time of that release.  I was in, and I had a feeling it was going to be epic. (and anyone that knows me also knows that I don’t use the word “epic” very often)

So, time passes, and we find out that Mariella is going to spend time in the hospital, and it’s scheduled…and I realize that we are set to be released from the hospital the DAY BEFORE I’m to leave for Florida.  It can’t really be moved around, but her doctors assured me that we would be released on time, and that it would be fine for me to keep my plans.  So began my frantic plans to make sure that the girls would be set to spend time with their grandmother and I would be set to go to Florida, etc.  Thankfully, Mariella was released after 3 days, not 6…so it helped immensely with my planning and preparation.

Fast forward to July 12, and I’m on the plane to Orlando.  I’ve traveled with my friend before, and each time, there has been SOME sort of issue with my flight, causing the travel day from hell…so, imagine my surprise when I get checked in, on the plane, and the plane taking off without a hitch.  We even got over Florida airspace and ready to land almost a full HOUR ahead of schedule.  Enter a thunderstorm that prevented the plane from landing, and circling over the airport for almost 2 hours before we were able to land.  BUT, at least we were an hour early to begin with, so it made us only an hour late getting on the ground, rather than 2 hours late.

We finally got to the resort, and got our bags dropped off, etc.  We headed down to where the convention was going to be held, and found out that they would be opening registration soon.  We hopped into line, and I noticed a very tiny person in a front pack.  Because I’ve loved all things baby since I was a very little girl, I was drawn to this tiny person.  We got to talking to the tiny person’s mommy and her friend, and “BAM” we made new friends, who we spent much of our time with during the convention.  We were registered at about 2am, there were some mistakes, and they asked us to come back at 7am to get it remedied.  With that, we headed to our room (dubbed by me as the Griffenclaw common room-again, you’d have to have some familiarity with the books or movies to understand that) and went to sleep for a few hours.

JULY 13: All our issues were fixed very quickly and without any fuss.  This was “Lit Day” that really had nothing to do with Harry Potter, and I kind of thought I would be bored to tears, but the sessions we went to were SO interesting.  There were a couple with Young Adult lit authors and editors and agents that were so interesting, but my favorite by far was the panel with Madeline L’Engles granddaughters.  Madeline L’Engle was my MOST favorite author growing up, and I still adore her books. (I so wish I could interest Abby in them…but alas, she is not)  It was SO interesting and exciting to talk with people who knew L’Engle so well.  I was able to ask some questions that I’ve actually had on my mind, and they were able to answer them.  It was so exciting to me to be part of that panel.

Opening ceremonies were so very cool.  The “theme” of the con was “Graduating from Hogwarts” and the opening ceremony was presented in a “Video Yearbook” sort of way.  (also, in our swag bag was the con program book put together like a year book…SUCH a neat idea)  There was a mixture of video and live performances.  They had decorated the main stage to look like the “Great Hall” and it was just really, really well done.

That night, Universal Studios also opened up the Wizarding World of Harry Potter to us from 10pm until 1:30am.  There were only 2000 people in the park, and so the wait times for the 3 rides were minimal.  I was also able to get Abigayle’s replacement wand (she broke the one we got last summer, and has been waiting since November to get another one)  I also got the girls their presents.  We went on the Forbidden Journey (which is the simulator ride in the castle at WWoHP) and I rode the roller coaster I wasn’t able to ride last summer, because Abby wasn’t tall enough at the time.  We stayed until about 12:30am, and we headed back to get some sleep.

JULY 14: This began the official programming of the con, and unfortunately, we didn’t get to do much of what we wanted, because they filled up.  BUT, it was a relaxing day that we kind of needed.  We did see a live performance of the “Potter Puppet Pals” (if you are a HP fan, and haven’t seen the PPP, look them up on Youtube…I find them hilarious)  From there, we all headed over to Universal City Walk, where we went to a screening of  Harry Potter and the Deathly Hallows 2.  It was about 6 hours before the “official” release of the movie.

I can’t even describe what it was like to watch the movie in a theater filled with people who feel the same way I do about Harry Potter.  We all started crying at the opening credits, and really didn’t stop until they were over.  It wasn’t so much that it was sad…the sad bits didn’t start then…it was more that the EXPERIENCE was overwhelming.  We all cheered at the same times, we laughed at the same times, and the whole theater was sobbing in unison.  I’ve never experienced that before, and I doubt I ever will again.

After the movie, we were treated to Wrock Concert.  For those who are not part of the Harry Potter fandom, much like people who create fan art and fan films and fan fiction…there are musicians who write and perform fan music. (I’m sure that it exists in many fandoms…it’s just that Wizard Rock shortens so nicely to “Wrock”)  It spans all the genre’s of music from rap to techo to punk.  One artist has decided to end his Wrock career, so that he can focus on “muggle music.”  It was kind of fitting that he retired at LeakyCon, on the night the final movie was released.  Then, I went to bed.

JULY 15:  We were treated to breakfast, as we were “Rock Stars.”  That means we paid extra for our tickets to ensure priority seating, and other perks.  After that, we headed to different panels.  The first we went to was “12 Fail-Safe ways to Charm Witches”  The presenter was SO well prepared, and was able to use examples from the book to show each “charm” and how Ron did it wrong, and then how he did it right.  It was funny and cute, and I would LOVE to see someone (JKR) actually write the book, like she did with the textbooks.  That was followed by a workshop called “Sirius-ly Celibate” in which sexuality in the books was debated.  It wasn’t a bad workshop, but it was really not relevant.  With all the debate on whether or not Sirius Black and Remus Lupin were gay or not, it was ignored that USUALLY, people who are on the front lines of a war are not really worried about relationships…and the people in the book that DID get married and started families were more of the minority.  It was still interesting, and I don’t think it was a waste of my time…I’m just shocked at how many people spend so much time contemplating the sexuality of book characters.

Later that afternoon, we were treated to an exclusive, behind the scenes look at “Pottermore,” the new online endeavor that JKR is giving us.  We weren’t able to see the entire presentation, because we were scheduled to volunteer, but what I DID see was AMAZING.  Fans know that JKR has boxes of content that didn’t make it into the books.  This content is going to be online in Pottermore.  She is also writing new material.  They are calling it an “online reading experience.”  They are having a hard time defining it, because it’s something that’s never, ever been done before.

We headed to our volunteer post, which was a signing by “Team Starkid”  (if you watch Glee, you’ll know the name Darren Kriss)  They have a youtube video called “A Very Potter Musical” which is also quite funny.  Apparently, they have a huge following, and therefore the line for the signing was out of control.  The signing was scheduled for 4pm, and there were people who had been waiting in line starting at 11am.  We were taking tickets and moving people through as fast as possible…but the time came when we were supposed to cut the line, and the people who were left would get wrist bands for first admittance to the next signing.   As the staff member came up with the wrist bands and said “we’re going to have to cut the line off here” and the next person in line, a mother with a teenager, began cursing and screaming and getting in this staff person’s face.  I took a giant step backward, as I had no way of making this OK, and I was honestly afraid this woman was going to start swinging.  Security stepped right in, and the situation was diffused.  Unfortunately, I’m not in charge, because I would have taken her badge and asked her to leave the con.  I don’t believe you can verbally abuse, and physically threaten people and still remain at the convention.  However, I’m not in charge, so this woman got a free DVD and was able to go through the signing.

We finished off the night with another Wrock concert…this one featuring my FAVORITE Wrockers, Harry and the Potters.  They were the group that pioneered the Wrock movement.  They will also be playing later this month a couple towns over, so I’m going to be bringing my Potter obsessed child to see the show there.

JULY 16: This started out with a performance by Team Starkid…I thought they were awesome, but my friend doesn’t really love the fan produced work, so we ended up leaving and hitting the vendor hall and some of the other things to see.  We went back in the main hall to see a presentation and Q&A with some of the actors who are in the movie.  Luna, Percy, Pansy and some of the kids who were in the movies answered questions, played a trivia game, and just all in all had a great time.  We then were allowed to have our pictures taken with them (in groups).  After that, we were able to go to a signing with them.  I spoke with Evanna Lynch, who plays Luna.  Luna is one of Abby’s favorite characters, as she relates to her quite closely.  When I told Evanna that, she said, “Tell your daughter to keep being Luna”  I thought that was so sweet.

To end the night, there was a charity ball.  It was so much fun, I haven’t danced that much since High School.  The Deathly Hallows kids (the young actors and actresses) had SO much fun, they were dancing and playing, and watching them was just incredible.  It was definitely a night to remember.

 

JULY 17:  This was the final day, and we were treated to a “Leaving Feast” of breakfast.  There was a final presentation, and wrap up.  We knew that all the proceeds of the con were going to charity, and we were told the initial, low ball figure.  $120,000 was raised for charity during the con.  I find it amazing that I was a part of that.

All in all, it was a wonderful time.  I made 2 new friends, I helped raise money for charity, and I was able to celebrate a book series and character that I have loved for a very long time.  As far as I know, there hasn’t been a determination as to whether there will be another LeakyCon…people have been saying “LeakyCon 2012″ but I don’t think so…if there is another one, it will be 2013…there is already another HP convention being run by another fan group next year…and I don’t think they like to compete with each other.  If Leaky does put on another con, I will definitely try to get there.  I’m sure I’ll be back to my regular drivel in the near future.

Our Adventure at “Camp Hospital”

We arrived, and from the minute we checked in, it was a whirlwind of meeting doctors and techs and nurses, etc.  As soon as we got there, a volunteer from Child Life came in and asked if we wanted a visit from the pet therapy dog…the answer was a resounding YES.

Straight off, they sent her for PFT’s.  The Lung Function Test department was OUTSIDE the hospital in one of the office buildings, in the Pedi Pulmo practice office. (It makes sense that they have one there, it just blows my mind that the hospital doesn’t have a PFT machine IN HOUSE.)  To get there, we had to walk about 5 minutes…in the gross humidity…past the smokers enclave area…Mariella pulled her shirt over her nose and mouth as we walked by.  I hadn’t realized it was so far away, and outside…or I would ahve taken their offer of a wheelchair for M.

Basically, we hung around and just waited.  The first night she slept with a sat monitor on.  We did have a little bit of a scare when her sats dropped to about 87….alarms rang and nurses and the night residents came running in.  She had BEEN running between 92 and 96.  We adjusted her position,(raising the head of her bed, and fixing her pillows) and her sats improved greatly.

The big issue we had, is that Mariella very rarely BEHAVES as though she isn’t breathing well…unless she’s REALLY REALLY sick, the low level of breathlessness she’s feeling doesn’t really keep her down…which is GOOD, except I kept saying, she’s getting breathless…stopping to take breaths in between words, or gasping after laughing, etc.  However, no one really SAW that, because when they were in the room, she was sitting quietly being examined, or they were talking to me.

They ran a generic blood panel, and also bloodwork for autoimmune issue.  She had an X-Ray done.  The X-Ray wasn’t horrible but did show signs of issues.  She had a follow up PFT that showed some reduction in her numbers.  They were still good, but not as good as they were when we got there.  It will be interesting what they are in a month.  The pulmo on the floor also wants a copy of her sweat test values.  He kept saying “I don’t think she has CF, but I want to see the values.  The Ambry Panel isn’t the definitive diagnostic tool, I need to see the values.”  I HATE when they do that.  If he doesn’t think it’s CF, then why does he NEED to see the sweat test values, and why did he say the genetics weren’t the definitive diagnostic tool?  (I don’t think she has CF, I just get very tired of it even being brought UP)

No one was really able to put their finger on WHY she isn’t growing, they all agreed it isn’t likely due to steroid use…but they don’t know what it’s from.

We got sprung early, because she was showing no signs of adverse reactions from coming off the steroids…no adrenal insufficiency, which was my fear. (albeit an over the top fear…I really had no reason to fear it, and I KNOW that)   There were no more tests they needed to run either, so they had no way to justify to the insurance company the need to stay.

I talked with both the pulmo on the floor and her attending pulmo separately,  and they both said that Mariella would not be able to stay off steroid medication.  That it was important to give her body a break, but that eventually (it may be a week, it may be a month, it might be 3 months) she will end up back on them.  I asked how I would know, and they both said the same thing, “Her lungs will tell you when it’s time”

So, right now, we’re in the waiting game.  It’s a very uncomfortable place for me to be.  I wish I had a time table…”in 2 weeks, restart medication” or something like that.  “her lungs will tell you” is kind of nebulous.

I AM glad to be home…I don’t THINK this was a wasted exercise.  I wish we had gleaned more information, but it is what it is.

 

things that cause breathlessness since steroid wean

Just because I’m noticing things that cause Mariella to get winded.

  • walking up stairs
  • walking down stairs
  • talking (she needs to take breaths in between words
  • laughing
  • showering

the showering one surprised me…the others are things we see even ON her inhalers.

Overall, though, it’s really going better than I expected.  She is definitely coughing more.  Definitely requiring her rescue inhaler or neb more…but it’s not a constant cough that I can’t control, like I was expecting.  Just constant breathlessness, like she’s been running and can’t quite catch her breath, even though she’s just been sitting watching television.

Tomorrow is the big day.  I’m pretty sure I’m as ready as I’m going to be.  Just have to pack up the technology, and we’ll be all set.

Quick Update-Nutritionist Appointment

No weight gain…but no loss, so that’s good.

There is a possible .25 in growth in height.  That being said, when the nutritionist measured her (it’s a pull down ruler) she pulled it down to her head, then let it go up and said “let’s see if we can get another part of an inch”  So, I’ll reserve my jumping up and down for a second measurement…but if it’s a true growth…the first we’ve seen in 3 years…you’ll be able to hear me cheering all over the place.

 

Still preparing for next week…I’ve got snacks and entertainment…I think we’re physically ready…mentally…that’s another story entirely.

We’re coming down to the wire….

 

Mariella started her inhaled steroid taper yesterday.  We’re getting her off QVAR first, then off the Symbicort.   It will take about 2 week.  By the day she’s admitted (July 5) she will be steroid free.

I need to start thinking about packing.  Her other stays have only been overnight, one or 2 nights…and she was happy to stay in a johnny.  I’m pretty sure she isn’t going to want to stay in a johnny for a week.  I did pick up some nice short and tank sets that can double as jammies…so maybe I’ll just pack those.  She can sleep and play in them.

Entertainmentwise, I think we’re covered.  I got her a new game for her DS (plus all the other ones she likes) and I’ll get her a new movie.  I’ll pack both laptops so that she can have one too.  I still have to get a few craft kits to bring.  I also know they have a great playroom for the kids…and I’m sure there will be a Child Life department as well.  We’ll go to the library next week, and she can get a few books to bring too.

 

As for me, I don’t want to pack to heavily, but I don’t want to NOT have what I need.  Mariella and I can share shampoo/conditioner and soap.  Neither one of us NEEDS a hair dryer…though I DO think I’ll pack my straightener.  I’ll load up my kindle and hopefully, the hospital doesn’t block social media sites. (I don’t know what I’ll do without Facebook and Twitter to keep people up to date on what’s going on.

 

Right now, I’m most nervous about the taper.  I know it’s safer than just cutting her meds cold turkey in 2 weeks, but I’m just very nervous about being home as we decrease her dosage.  I KNOW that the risk of anything happening is SO slight that it’s nearly non-existent, but I’m still nervous.  I often feel like “other people”…you know…when people say, “oh, that can’t happen to me…THAT happens to ‘other people’”  Yeah…’other people’…that’s me.

So, my list for Mariella is

  • pajama/clothes
  • robe (she loves her robe)
  • slippers
  • flip flops or sandals
  • lap top/charger
  • DS and games/charger
  • ipod/charger
  • books
  • craft activities
  • easily packed games
  • toothbrush and toothpaste
  • comb and detangler (darn curls) and hair ties

For Me

  • clothes for a week (my clothes are SO much bigger than hers, they are going to take so much room)
  • laptop/charger
  • ipod/charger
  • kindle/charger
  • other personal care stuff

For both of us

  • shower stuff

Does that look like a good list?  Is there anything that I’ve forgotten?  For those of you that travel, any tips on how I can keep my stuff light…I’m not used to traveling to a place where I don’t have access to a washer and dryer…and a weeks worth of clothes just seems like a whole lot of stuff.



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