More changes possible

I've been trying to write about this for a few days.  Since I kept getting an error on Facebook saying my account was down due to a site error, I waited until I could log into Facebook again.  Like a true addict jonsing for a fix, I think I checked my Facebook every 5 minutes for the majority of the 24 hours it was down.

Anyway, Tuesday was our first infusion day for Emily's new medicine, Rituxan.  Apparently, the first 2 doses are double doses, then in about 4-6 months a smaller booster dose is administered.  I guess someone forgot to tell the scheduling desk this; they scheduled us a 6 hour slot for an 8 hour dosage.  Oops!  I realize that our scheduling desk has been suffering from "growing pains" due to a staff change.  I have learned when staff changes to expect things like this to happen.  I can't say I wasn't surprised, but it takes a lot more than that to upset us.  I was also pleasantly surprised to find that we had been put on the doctor's schedule.  I knew that we were scheduled for next week, but apparently they added us in because I had called to let them know that we have weird things going on. 

I have been trying to figure out what the heck is going on with Emily's little body for months now.  On the high doses of Prednisone she was doing very well, except for getting sick more often than usual.  At first, I just assumed it was because she's on 3 immune suppressors.  (Now 4 since we've added Rituxan).  However, the more we've gone down on her Prednisone, the more changes we notice.  Aside from getting sick more often, specifically her asthma flaring, she started getting fevers the week before her Remicade was due.  I thought this was just because she was sick, but Kevin pointed out last month that she's probably been flaring.  I don't actually remember her complaining about her joints before, but the past 3 months she has.  (Thankfully her muscles have been quiet & under control.)  So, now what we have is a child who is on daily asthma controls, who is at high risk for pulminary hypertension and other systemic disease effects (since both MCTD & Dermatomyositis are systemic diseases), who is getting ill and flaring the week before her meds are due.  This past month her Remicade did NOTHING for her knee, and about 2 weeks in, her hip socket was causing more pain.  The hip only lasted about 2 days, but her knee pain didn't stop until we increased her Prednisone from 4.5mgs to 15mgs.  I don't like that, not at all.  But she was in enough pain to agree with it, and her asthma was acting up so it helped both.  This got me thinking.  How often was she sick because her Remicade was wearing off?  How much has the Prednisone masked what the Remicade has done?  And my answers were ones that I didn't particularly like.

I'm not one to panic anymore.  Yes, at the start of all of this I did a LOT of worrying.  We had a lot of diagnosis ruled in, then back out.  I realize that with autoimmune & rheumatic diseases, you just don't know until there is concrete proof.  Many things are not what they appear.  However, one night out of the blue it occurred to me: What if the Remicade isn't working as well because Remicade isn't meant for systemic patients?  What if this "asthma" isn't asthma, but possibly the start of systemic features?  Despite not wanting to make it real by putting it out there, I forced myself to ask the nurse practitioner if that could be. She had already arranged for a repeat pulminary function test at my request.  She explained that's why she agreed to the test, why they wanted to try the Rituxan, and why they increased the Prednisone.  We also increased her Symbicort strength from 80/4.5 to 160/4.5.  I think I'd feel more comfortable leaving her on the higher dose at this point, but we'll find out more next week.  She said the PFT can usually distinguish between asthma and other pulminary restrictions.  Good to know.  Depending on what the PFT shows, we may repeat her chest xray.  We haven't had one done since October.  By this point, it was already an hour into our time there and we still hadn't gotten into the infusion room.  I still had no idea how long the infusion time was for this med.

As soon as the nurse started looking to find a vein Emily got very upset.  Em knows that if she can't feel it, then the nurse can't either.  I prayed and prayed for one poke.  Nope.  Poke number 1 produced this:

  Needless to say, by this point Emily was really freaking out.  She was sobbing, yelling at us, seriously freaking out.  I can understand how she feels.  No one wants to go through all that she has to.  It really isn't fair at all.  However, by this time we're at a point where they have to hurry & find a vein or it will be too late to do the infusion.  Great.  We had a lovely conversation with a little girl across the way about her port.  Well, I had the conversation.  Emily sat there angry at me for talking about it.  I spent almost the whole time there talking to various people about the port.  I saw the doctor 3 times, the nurse practitioner 4 times, the Child Life specialist came to sit with us and bring us a book to take home about ports.  All of the regular nurses took turns talking about it.  One in particular teamed up with the nurse practitioner.  I ordered the referral to the pediatric surgeon during this conversation.   And later on, after the doctors and infusion room nurses went home and we went to an inpatient room for a few hours, our night nurse & I talked about it.  I think she's now heard enough to be ready.  She's certainly considering it.  She's told me 3-4 times now that she thinks it may be a good idea.  We're both tired of the stress and trauma associated with blown veins.   Before we left, the other nurse practitioner came in.  She was actually downstairs with her son at the orthodontist but she got sucked in to help us get Emily's Methotrexate dose there instead of me giving it that night at home.  (This is the nurse that many other people don't like, but she's always been really cool with me.  We even joked around a bit.)  While I had her there, I asked her the one question that I had forgotten to ask.  Many of the JA kids are systemic, which used to be called Still's Disease.  Still's classic symptoms are at least one fever spike daily and a specific type of rash.  I didn't think that Emily would ever have any of those symptoms with her MCTD, but I wanted to ask to be sure.  I'm happy to say that I don't need to try to remember to monitor her temp constantly.  She shouldn't have any rashes like Still's, either.  The practitioner that came in for the MTX orders also called the house the next day to make sure that we made it home safely.  How sweet is that?!?!?!

Em didn't sleep well that night after we finally got home around 12:30 A.M.  However, she slept in the car and in the hospital.  The next day she slept a lot, and today she's had a lot of rest.  Hopefully this med will help her to have more energy, to feel better.  We won't know for quite some time if it works, but we're certainly hopeful.   Next week we go for her Remicade & PFT.  We were given the choice to go back the week after or skip a week.  We will skip a week and go back for her next Rituxan after that.  Depending on how her immune system looks, she may also be given IViG to boost her system.  Hopefully we'll know more about what's happening on Wednesday. 

The JA Conference! (Long)

I know that I touched on this a bit in my last post, but I wasn't able to give it the love that I wanted to.  I'd like to start by thanking the Arthritis Foundation.  I cannot express to you how much they have changed our lives.  We would not have been able to attend this year if it wasn't for them.  They have done so much for us!  We try to give back as much as we can, but I will forever feel in their debt.


The JA Conference this year was near Washington D.C., in a Marriott in Crystal City, VA.  The hotel and its view were both beautiful!  The conference started on Thursday.  We didn't arrive in D.C. until after the first evening's festivities were mostly wrapped up.  We did have the opportunity to attend the first networking sessions.  Those are very important.  They broke the parents into mom & dad groups, and the kids were with their own ages.  It's so cool to get together in a large room filled with other people that are going through exactly the same things as you.  This years added appeal for me?  My Facebook groups!  I am so blessed to have found these wonderful ladies (& a few gentlemen) on Facebook.  Each and every single one of them is amazing in their own way.  Many have raised a staggeringly high amount of money for the AF.  Most are trying to raise awareness, some are trying to start non-profits, some are donating to their hospital's children's rooms.  Some are dealing with extremely sick children; others are just trying to get by as single parents with chronically ill children. Each one is amazing in their own way.  This year as our group is nearing the one year "together" mark, many of us were able to meet in person!  It was truly a huge blessing meeting these people.  (Have I stressed that enough?  You just couldn't know unless you went!)  I truly felt at home, excited, energized, and with my family.  It was a beautiful weekend!  Not nearly long enough.  I soooo wanted more time with the Amy's & children  :)  I need to get out more.  I don't get out enough, so when I do I am completely overwhelmed.  I don't know where the time went!  I don't think there could possibly have been enough time to chat with all of these people the way I wanted to.  Love you all! 

Friday-  The speakers during the opening session talked about some of the CARRA group's research and clinical studies.  One of the speakers was Norman T. Ilowite, MD, the principal investigator of  the RAPPORT study.  This study is extremely important to the parents and children affected by Still's Disease, a systemic form of Juvenile Autoimmune Arthritis, or SJIA. This session also addressed the importance of participating in and supporting clinical trials.  

We had our choice of where to go for the next round.  We chose "Other Pediatric Rheumatic Diseases", hosted by Dr. Natasha Ruth.  This session addressed different forms of vasculitis, Lupus, MCTD, Dermatomyositis, and Kawasaki's Disease.  We learned a lot in this session, including what some of the bumps on Emily's hands may be from, that you can have a +ANA and not have an autoimmune disease; we learned about central nervous system disorders, and we learned the Emily should have an Echocardiogram yearly.    I also asked a question that has been bugging me for a while during this session.  To me, through all of my research I believed that, while many people with Mixed Connective Tissue Disease may have myositis symptoms, from her initial onset I truly believed that Emily had developed the DM as a separate disease.  I also believe that she did at some points have myositis features, before she developed the full-blown disease.  I asked this doctor if that was, indeed, possible.  She agreed that it sounded likely in our case.  This means that, while having no confirmed systemic features right now, Emily has 2 systemic disease.  (I later confirmed with Dr. Rider, also.)


The next class that I went to was "JA Perspectives Panel".  There were several speakers here, all of which either had JA as children or have been parenting children with JA for a significant amount of time.  This is a great time to ask questions about what the future may potentially hold, or how to handle certain situations.


The next class that we went to was "Medications Used Commonly in Children with Rheumatologic Diseases", presented by Dr. Sandra Hong.  OMGosh!!!  If I was ever able to just move to follow a doctor, I would follow her.  I love our rheumy's, I trust them, I know they have our child's best interest at heart.  However, this little lady is a huge ball of energy!  She looks about 25 (gotta love Asians!), and she spoke like a teenager.  This would create obvious appeal to the kids. She was so cool & down to Earth!  Kevin & I totally loved her.  He didn't go to this class with me, but we had a pow-wow in the hallway the next day with her.  She wanted to make sure that we didn't have any questions, that she discussed what we needed to know about, etc.  She gave us some really great advice on meds and tests to keep in mind.  She was seriously awesome. 


Saturday brought an opening session on advocacy, as well as an awards presentation.  We had somewhat of an inside view into the health care plan, how to make friends with your representatives, how to gain approval for your cause, etc.  This was very important information since we really don't have enough people meeting our politicians advocating for our kids.  This was hosted by Kevin Brennan & Calaneet Balas.  


We chose to go to "To Rest is to Rust" next, hosted by Jennifer Horonjeff, MS.  We missed half of this session as we ran into Dr. Lisa Rider, co- author of  "Myositis and You: A Guide to Juvenile Dermatomyositis for Patients, Families, and Healthcare Providers".  I was sooooooo excited to meet her!!!  I discussed another CARRA group research study with her, "Rituximab in Refractory Adult and Juvenile Myositis (RIM) Study".  This was huge to me because our rheumy had asked us Wednesday to consider trying this.  I was able to speak with several people that have tried this, parents of children that are on it, and Dr's Hong & Rider.  This conversation with Dr. Rider helped me to make up my mind for sure to try this approach.  She was so cool, so brilliant and so sweet!  She told me that I could always call her office with questions and she would be more than happy to help.  How many doctors would make an offer like that?  I really appreciated this time with her.

When we finally got into the session we were headed to, it was mostly over.  However, we caught enough to figure out that we don't really fit into a category at the moment.  There are a lot of things that Emily can't do because Prednisone can cause ostopenia (brittle bones).   The speaker was sooooo cool!  She was another twenty-something that I really hope also spoke to the teens.  She was pretty awesome.  She was very funny & animated and used visual aids to help make her audience understand.  

After lunch we chose to head to "JIA & Jaw Issues" with Dr. Randy Cron.This brought up some scary points, like most children have jaw involvement and don't even know it!  Up to 81% of JA kids have jaw issues.  This can cause the jaw to not grow properly, causing deformity with a "short" jaw.  Most docs don't think to order an MRI, and if they do, most radiologists don't know how to read them for children.  How astonishing is that???  We missed a good chunk of this class speaking to Dr. Hong, but what we caught was rather unsettling in content but very informative!  Excellent speaker and session.


Our last session of that day was on "Community & Financial Resources from A-Z".  Honestly, I knew a lot of this already.  There were a few good links that I wrote down, but I had already researched this area a lot.  I thought maybe I had overlooked something, but I guess not.  For a parent new to having a sick child, this would have been a huge help.


Overall, we learned so much!  It was so good to be able to keep Emily & her brother together.  They were in the same room as some other Florida children so Emily felt a bit more comfortable than last year.  (It was a mistake bringing her to Philly without her brother.)  Also, we didn't know that she was more sick at the time.  It was a few months later that the puzzle pieces came together.  It was good for my son to be with other JA kids.  They had a session with Mr. Byron Janis, pianist, songwriter & Psoriatic Arthritis patient.  I was really excited about this since my son has psoriasis with no arthritis.  We don't know anyone else with psoriasis that is his age, or even with psoriasis as visible as his.  


This was also a fantastic time for my oldest.  At 16, I thought that she may be bored.  Apparently, she did, too.  Not so much  :)  She asked if she can come back next year.  I don't think that she has really understood all that her sister goes through, either.  I believe this experience helped her to "get it" more.  I'm so glad that we were able to go as a family.  Everyone really needed this.


One more note on the AF- recently a good friend was laid off.  We all know the economy is horrid.  Arthritis is so misunderstood and under-appreciated, & while the AF has very few paid employees, it's hard to keep all of them right now.  While we are sure that he will do very well in future endeavors, we know how much this person did for our children.  It was his heart that helped many of us in Florida come together.  Between Facebook and planning days for us to meet, he got us together.  He started the "Mom Squad".  This was hugely important for me.  This made me feel I could be more proactive than reactive, & I was making a difference.  I'm hopeful that this program will continue to grow, but I'm sure it won't be with as much love and nourishment as he provided.  And he waited until after the conference to tell us all so we wouldn't be sad there!  How sweet is that???  We are very grateful to have had such a kind, loving heart working so diligently for our children.  I won't name names, but he knows who he is ;)  I know he will remain a friend on FB and we'll probably meet up again, but I will continue to mourn the loss of his presence with the AF.  I will continue to do all I can, maybe even more now.  Thank you for all of your hard work for us.  Luv ya! 













 

A few changes

Before we headed off to the JA Conference, we had to stop at our hospital for Emily's infusion and doctor appointment.  I expected a few questions to be answered, a quick appointment and quick poke since she's done so well lately.  Nope. 

The first poke by her favorite vampire, Jason,  got them absolutely nowhere.  That was enough to bring out the tears.  He called in Ariel who thought she had it, but didn't.  They tried the 2nd arm to no avail.  They decided we should use a little more Emla cream and hit up her hand.  She hates that.  They tried and again failed.  We discussed what would happen if we skipped it, which I really didn't want to do.  That would just mean going through all of this again in 2 weeks.  Finally, a nurse helping in the ped's room got it.  Thank God!  That brought the doctor around asking us if we had considered a port.  Well, in truth, I had.  I had been waiting for them to bring it up.  I have my mind made up, but Emily is harder to convince.  I think it will take her a few more months to grudgingly accept.  I hate having to go through the stress, tears, the trauma of having her poked monthly.  To me, it's an easy answer, but since I want her to feel that she has some control over her health, we will wait a bit.

The other thing that I really wasn't expecting was for her to bring up another med.  This really stressed me out a bit at first.  Thinking about picking a new "poison" is always scary, but there aren't very many options sometimes.  Emily has been very tired and her joints are flaring badly a week or so before the next infusion.  She's also been sick a lot.  Our doc suggested that we try Rituxin.  Rituxin kills the "B" cells.  These cells are cancer causing, so it would decrease her risk of cancer, but they also kill off the immune system even more than her other 3 immune suppressors.  To address that little side effect, they will also give her regular IViG.  I'm a big fan of this med.  It's actually taking the platelets of the blood of 2,000 donors, mixing it together, sterilizing, and voila!  You have an organic med that will help to confuse an over-zealous immune system.  I'm for it.  I realize that some people get debilitating headaches from it, but I also know that there are different brands, and if you can try a brand, you will likely find a way around side effects.  Our docs are big on giving IV steroids (Solu-Medrol) with each infusion.  This helps to eliminate side effects.

Needless to say, I was thrilled to get to the JA Conference and talk about ports and Rituxin.  I was a little sad that the Rituxin reps weren't there; I'm assuming this is because it's not actually FDA approved for young children yet, but we're pretty much out of options.  I did, however, have the opportunity to meet and speak to several parents and pediatric rheumatologists about this, as well as get some input from parents in my Juvenile Arthritis Friends group and my JM Moms groups.  The general consensus?  We're going to try it.  I'm not sure what else to do now, to be honest.  Right now, Emily is definitely doing better than some of the kids, but she can't play.  She isn't in agony all of the time like some of the systemic kids, but she does have a lot of discomfort and she's definitely got pain daily.   Her quality of life right now is far from ideal.  Her endurance is very low.  Yes, I still consider us blessed!!!  While MCTD is far from ideal, I'm happy that she doesn't have a terminal disease. 

Since Emily developed the Dermatomyositis on top of the Mixed Connective Tissue Disease, I've often wondered is this what they refer to as "myositis features" that comes with MCTD, or is this its own, primary disease.  I was able to ask 2 doctors this.  I have always felt that, while she had myositis features before (I think from looking at her labs) I truly felt that the DM manifested as a primary disease.  She had a high fever for almost 2 weeks, the rash developed around this time, her weakness was very severe; she couldn't roll over in bed.  Usually with MCTD the patient would have just features, not the whole disease.  Everyone agreed that with an onset like that it is a primary disease.  I really wanted it to be part of the MCTD, but I feel it's important to be honest with ones self.  I also feel that as long as I know the truth, we can find help.  While it wasn't something I wanted, it's good to know.  3 kids in a million have DM.  The odds are similar for MCTD, though I don't know actual figures.  That is really like winning a bad genetic lottery.

We learned a LOT from the conference!  The best part was feeling like we were at home.  I love my FB family!  I have met these people on Facebook, but we all come together because we understand the situations that others have in a way that outsiders couldn't possibly understand.  It was so cool to meet so many amazing people in person... and feel like I've known them forever!  The conference helped my oldest to better understand things, too.  It was really a wonderful weekend.  It's great to swap stories, talk medicine, and ask whatever burning questions you have.  The sessions are set so that newcomers aren't totally confused, but there's enough content to keep a knowledgeable family's interest.  We truly appreciated this special opportunity.  It will probably be the last trip that we take for quite some time, so we didn't take any of it for granted!   

Last day to participate in the auction!

May-July has been crazy for us!  I had wanted to post this before we went out of town, but I simply didn't have enough time. 

As many of you may know, I am a volunteer for IAAM, which is the International Autoimmune Arthritis Movement.  Our great leader was finally sent the official paperwork granting the organization non-profit status!  How best to begin raising funds for a non-profit that is just starting out?  How about an art auction with all pieces created by sufferers or people affected by different forms of autoimmune arthritis?  If you are in the market for some original artwork, you are looking to donate to a good cause, you would like to show support or any combination of these, you can see the artwork donated to IAAM here.  If you are interested in learning more about IAAM, or would like to volunteer, go here. 

IAAM focuses on bringing awareness to chronic, debilitating, "invisible" diseases that are autoimmune in nature and have arthritis as a primary feature.  Rheumatoid Arthritis, Ankylosing Spondylitis, Lupus/ Mixed Connective Tissue Disease, Psoriatic Arthritis and Scleroderma are all included.  When a person says, "I have arthritis", the likely responses are likely to be similar to "yeah, I have that, too.  I take Aleve for it", or "you should eat more vegetables".  People don't understand that these are serious Autoimmune diseases.  These aren't like what you got from riding your bike too much!

Our fearless leader writes this in an email: 

"It took a year and a half and more than 2 dozen volunteers. It required commitment, diligence and the passion from people who were determined to make a difference.  And on May 7th, 2011, the 40th birthday of IAAM's Founder, the news was delivered that the International Autoimmune Arthritis Movement had officially become a 501c3 nonprofit charity...and the 1st in history to exclusively benefit Autoimmune Arthritis.

 To raise funds to cover start up costs and initial programs, IAAM is hosting the Online Autoimmune Arthritis Art Show & Auction RIGHT NOW! 

The event is divided into 2 parts- the Art Show where you can buy pre-priced pieces from as low as $4.95 a piece!   We have over 60 submissions from artists, ALL entries submitted by those affected by Autoimmune Arthritis.

 

Submission from Giada, Italy, honoring her friend she lost to Systemic Lupus. Available for Print Only in the Art Show portion of this event.  You may purchase a print for as low as $4.95 by visiting our Fine Art America IAAM Gallery . 

The 2nd part is a LIVE Auction, containing

over a dozen original works (also 100% by those affected by Autoimmune Arthritis) that can be bid on through July 18th.   We have 22 items for bidding, some of which are featured to the left.

  

HURRY! THIS EVENT ENDS JULY 18TH, 6:30PM PACIFIC TIME (UNITED STATES). 100% OF THE PROCEEDS WILL BENEFIT IAAM AND ARE TAX DEDUCTIBLE. "

Please consider helping if you can!

6 more days!

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

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

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

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

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

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

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