The CURE for Chronic Illnesses...by Logan Lentini

Today, Logan posted this on Facebook and I think it is worthy of a blog post...

Incurable, it’s a word that some of us are far too familiar with, and quite frankly I am tired of hearing it. Obviously there are countless diseases that are incurable; diabetes, arthritis, lupus, fibromyalgia, cystic fibrosis, and many cancers, currently have no cure, just to name a few. For many chronic illnesses, symptoms are manageable, but in other cases the symptoms can be lethal. 

When health professionals verbalize that a disease is incurable it can do one of two things. From a patient’s perspective, hearing that word can potentially eliminate all aspects of normalcy from their life. To a non-patient, hearing that something is incurable can stir up a whirlwind of emotions, especially if the non-patient personally knows a patient battling chronic illness. However, saying that chronic illnesses are incurable is simply false. Though there may not currently be a cure for a specific disease, that doesn’t mean that there is no cure at all. 

This is amazing news; if you think about it, there is, in theory, a cure for every chronic illness known to man. All it takes for a cure to be discovered is the right person conducting the right research. The cure could lie in alternative medicine, or genetics, or somewhere else, but there is a cure. We are on the right track as a society to finding these cures too; many chronic illnesses are now manageable through pharmaceuticals, and various other methods. Knowing how to manage the symptoms of chronic illnesses is the first step to understanding them on a cellular level, which in turn will eventually lead to the discovery of a cure. 

Now I’m not saying that every chronic illness will have a known cure over night, or even over the next ten years, but I do believe that in this century we will find the answers that we are looking for. There is a solution to every problem, and there are cures to chronic illnesses. As long as we stay hopeful, and advocate for ourselves, the right person will eventually come to the table and make the discovery that we have been waiting for; the discovery that will change the world.

Almost a Year… 9 months with No Hospital Stay!

Many of you know that we have been at All Children’s Hospital since Monday, as I have been updating on Facebook…but it just occurred to me that some of you are NOT on Facebook…so here is the scoop…

I really do believe that everything will be ok…and I trust that prayers will be answered and that this will get better, but tonight I am giving myself permission to be really really furious with autoimmune, auto-inflammatory, and immunology diseases!  They really do complicate our little guy’s life big time!  And it is totally not an easy road!

Last week Parker shared with us that he has been having some vision issues (he actually was having issues for several weeks but didn’t say anything).  We went to the ophthalmologist and Parker shared that he is having blurriness and  intermittent blindness when he moved his head/neck or changed positions.  He is also having headaches and nausea.  The doc tried to decrease his fright by saying it was likely a med side effect or high blood pressure… until he actually looked in his eyes.  He is having papilledema (swelling on the back of his eye nerves) and several things can cause this.  So he told us we needed to get in to a neurologist.  We tried all week to get a neurology appointment and even the ophthalmologist tried …but before we could get an appointment, Parker’s intermittent vision loss was increasing in frequency and length of time.  It was progressing.  He is also having fevers daily for about a week that come and go.

So after calling both the ophthalmologist and the rheumatologist, we went to the ER.  Rather than going all the way up to Shands Hospital we decided to go to ACH because the ophthalmologist and neurologist were at this hospital.  An MRI was done and ruled out a tumor and MS.  Good news.  But when looking in the eyes, Parker definitely has significant swelling on the back of his eye and it was neither uveitis nor iritis (two eye diseases that sometimes happen in conjunction with JA). 

Parker took this just before his spinal tap.

He was admitted and a spinal tap was done the next day.  The spinal tap confirmed that he had increased pressure.  Although the spinal tap was used for diagnostic purposes, the hope was that it would also relieve some of the pressure, thus the swelling in his brain.  They removed some of the cerebral spinal fluid but as they did, the pressure tried to keep shooting up.  They did remove some and they actually hoped he might continue to leak some from his spinal tap sight…but he didn’t really do this.  The neurologist explained that he is one of the “rare kids” and that this might be a bit challenging with things getting worse before they get better.

He confirmed he does have what is called a pseudo tumor (increased cerebral spinal fluid (CSF) pressure).  When he looked in his eyes today it actually looked worse.  He also said that even though they removed CSF, it was probably already reproducing. 

He pulled the MRI pics up on the computer and gave Parker and me a little tutorial.  He also said there was a small lesion on his frontal lobe, but he is not overly concerned with that at this time.  The plan was that he would be discharged today on Diamox...we even got the A-Okay from rheumatology.  But then we found out, nope…he can’t have it because it is related to sulfa drugs which he is allergic to.  So then they thought of an alternate (less powerful med) to possibly use and then they said no…it can’t be given with one current meds.  We were told at noon today that we were going home, only to find out at 8:00 pm that NOPE…we have to stay and wait to consult with pharmaceutical in the morning.  This may seem like no big deal…but oh my goodness it is such a big deal because if they cannot bring this swelling down then it could cause permanent damage. 

But the even bigger deal is the joy all this stole from Parker this week.  He put money down to reserve the new spiderman game way back in Dec. and it came out the night we were in the ER….Michael promised to take him to get that game.  He was so looking forward to playing his super hero game this week and then when we didn’t get to go home again tonight that was a really hard blow.  I know in the scheme of things this is small…but it is so big too.  And then there is the upcoming walk...it is Saturday!  He sooooo wants to be there.

Everyone is asking why this happened…they don’t know for sure but it was likely the perfect storm of disease, long term steroid use, and weight gain.  This poor kid has not grown in height since 3^rd grade and is now in 9^th.  Yet he has more than doubled in weight on his small frame.  And it doesn’t help that he is still on hydrocortisone for his adrenal issues because that can make the CSF pressure worse. 

In the midst of all this, we did get some good news…The good news is that he failed his growth hormone tests and he is supposed to start growth hormone soon.

So this is why we drive everyone crazy asking for donations for our JA causes…this is why we walk in the Arthritis Foundation Walk!  This is why we pray so hard and continue to have HOPE!  This disease has such an impact on our family.  We cannot do this alone and we are so glad we don’t have to.  Thank you doesn’t quite seem like enough…we are grateful to each of you and for what you bring to our lives.

Click here for our Walk Team Page:  Parker's Purple Playas and Logan's Dream Team

So Many Thoughts…

As a family, we have chosen to openly share our journey with juvenile arthritis.  This was both a difficult decision and an easy decision.  Difficult because in some ways it leaves us vulnerable and somewhat open to “judgments” and “opinions”; however, we know there is a great need for awareness and advocacy.  Many are often shocked when I tell them that I have rheumatoid arthritis because I am “too young”…you can imagine their greater shock when they find out that our children have JA.

Each family that is impacted by JA has their own story, their own coping strategies, their own experiences…but we all have one thing very much in common…we all have a child whose life is impacted by an autoimmune disease.  All of our children are “children first”…they have dreams of children…they want friends; they need their education; they long to play.  As parents we try to provide them with the best opportunities we possibly can between therapies, hospital visits, doctor appointments, procedures, infusions, etc.

Lately, I have been pondering how perceptions are shaped by our experiences.  How we perceive situations based on our “view” will either allow us to take on another’s perspective or not.  There are moments when either my husband or I have been misunderstood; and we have also witness our children being misunderstood.  For instance, during our last hospital stay one might say “Parker was not very nice or he was not coping well” and in that moment probably not.  However, what was not immediately apparent were all the circumstances surrounding that situation.  It takes great skill to look at the bigger picture and try to understand the whole situation and to understand his perspective.  And please don’t misunderstand me…we still asked him to reflect on his actions and apologize.  When others take the time to truly understand, that is when the miracles have the ability to happen.  I do believe that social-emotional support is just as important as the medical treatment.

I know we are not perfect…no one is…I know we are making some mistakes along the way…that is our opportunity to learn.  And I am sure we will continue to make mistakes just as I am sure we will continue to learn.  We are dealing with an autoimmune disease umbrella that has limited answers and much uncertainty.

We have learned many lessons through this disease and our appreciation for life is greater.  We know that simplicity is golden.  We enjoy the breeze in the air a little more.  We feel the depth of love with deeper affection.  We cherish naps full of dreams.  We cuddle just because.  We celebrate laughter often, even when it’s through a few tears.

Do I wish none of this had ever happened?  Sometimes…we have felt and witnessed great anger, sadness, and pain.  But sometimes I think, but then we would not have met some of the most amazing individuals on this planet…who just show love without having to be asked…The human spirit is quite remarkable.

We want to tell everyone thank you for joining us in this journey, for supporting us during our fundraising and walks, for listening, for celebrating with us and for cheering us on.  We advocate for our family and all the children with autoimmune diseases in hopes that a cure will come for each and every child.

We are thankful that we have a support network that is willing to walk alongside of us…even when we don’t know where we are going.  We appreciate your willingness to simply just “be” with us.  Our family pulls profound inspiration from your support and together we are stronger…

Much love from the Lentini family (A.K.A. The Purple Playas)

World Autoimmune Arthritis Day (WAAD)

Join "World Autoimmune Arthritis Day" (WAAD).  Registration for WAAD is now open.  WAAD is run by the International Autoimmune Arthritis Movement (IAAM). For more information on IAAM please visit:  http://www.iaamovement.org/

Last year I attended this fabulous event and it was quite exciting to hear about autoimmune arthritis and how it impacts both adults and children.  They offered both general topics and disease specific topics, and in addition to presentations there were opportunities to chat with experts and others who are battling autoimmune arthritis.  And the best part…you can attend from the comfort of your home.  I attended part of the conference from my couch and also from my bed.  Talk about convenient!  I hope that you take the opportunity to join WAAD this year.  Registration is free and you can attend when it is convenient for you.

It's time to REGISTER for FREE to attend World Autoimmune Arthritis Day's 2013 Virtual Convention! Register at: http://worldautoimmunearthritisday.org/expo/

World Autoimmune Arthritis Day is an annual 47-hour event where nonprofits, advocates, and experts from around the world unite in order to provide educational and awareness information to patients, their supporters, and the general public.  This year’s event aims to triple in size from 2012, adding Nonprofit Booths, Vendors, a Raffle and a special feature: A Day in the Life with Autoimmune Arthritis (an Apple/Androis app and Exhibit Booth).

WAAD13 begins at midnight of the first World Time Zone and ends at 11:59 of the last World Time Zone, or 6am ET/USA May 19th and ends at 5am ET/USA May 21st, 2013. It is an interactive, LIVE, Virtual Convention that you can attend for FREE...just find an internet connection and join the rest of the world for 47 hours of education and fun!