Saturday, September 8, 2012

Taking over...

My name is Jenna Smith, and as many of you know, I started Project Destiny in early March, 2012. It was started to help out an amazing person, named Destiny Lomonte. While we are still helping Destiny, our funds will eventually be given directly to Dysautonomia Research because we have officially been approved to become a Rotary sponsored project. There will be a few months of paperwork and such, but hopefully by December or January it will all be set up! Once this change happens, we will also raise money for Destiny on our own-separate from the project-so that she will not be left on her own.
If you or someone you know would like to order a blanket you can email me at jen1216@sbcglobal.net. We take custom orders and ask for a donation of $40 per blanket, with $5 shipping anywhere in the U.S.
They make great presents!

Taking Over

Hi Everyone,

I just wanted to post, and let everyone know that I am having Jenna Smith take over this blog. She is the creator of Project Destiny, and knows much more about all the orders and such than I do myself.

And honestly, it's hard enough keeping up with my own blog at this point. haha...

Keep smiling, no matter what happens!!!

~Destiny

www.fightdysautonomia.blogspot.com

Saturday, August 4, 2012

Thank you for all of your support!



It helped pay for a 4 day hospital stay, where I finally started getting the treatment I needed. I met with my Neurological Autonomic Specialist, and three of her students. This also helped me start a new medication which has saved me. It brings my blood pressure to a normal range (90/50) and helps me to stop fainting. It got me a team of 42 doctors, who are following me, and learning a lot about me, and my disease and helping me in any way that they can. It pays for co pays for my surgeries and procedures.


This is the shower chair that Matt Orthober got for me. This make it so I can have a little bit more of independence when it comes to taking a shower. Without this chair, I had to have someone helping me stand in the shower, otherwise I would faint, and end up hurting myself. So, now when I take a shower, we use this chair. Thank you, Matt <3



My wheelchair was given to me by Ann Fuge, as a gift from her and my Clintonville Rotary Club....without it, I would never be able to leave my bed. When I was staying with Sandy, before we had the wheelchair, Sandy would help me to the bathroom, and we had chairs set up all around the house, so I could stop and rest.


This is an O2 meter. You know how when you go to the hospital, they check to make sure you are breathing okay, by putting something on your finger? That is what this is, but I have it here at home. Without it, we wouldn't be able to tell how my lungs are doing...and if they begin getting bad, I can take the proper steps to hopefully avoid a trip to the hospital. I also use this to monitor my pulse. If I start to see it spike, I know something is wrong, and take a special medicine to calm it down. This was bought by the money from Project Destiny.



This is another medication...without it, I would be dead. This is my seizure medication for my Epilepsy. Without this medication, I have constant seizures, which would eventually lead to brain death. I take 5 of these every day. Without my medication, the seizures continue longer and longer. This is bought every month for $400-$800 depending on the dose. From Project Destiny.



These are the rest of the pills I take 2x a day...without them, I'd already be dead. Paid for by donations from Project Destiny, and the choir concert, and Boyz in Bowties...Thank you <



This is Miss Flow. She gives me medicine through my heart catheter, and gives me fluids that fools my body into believing it has more blood than it really does, in turn raising my blood pressure. Miss Flow is at home with me, and comes with me where ever I may go, and provides fluids that keep me nourished and not dehydrated. The panda hat on top of Miss Flow is from Mama Shepard,..a woman who has been a source of comfort and humor through this all. Always making me smile. :)



Project Destiny, and future profit made from the online fundraiser pay for my medication, and my treatments, such as these. These are what I get through my heart catheter. Part of keeping me as comfortable as possible is making my room not look so much like a hospital room, so we came up with clever boxes to hold all of my medicines and equipment.



It also pays for my back braces, ankle braces, knee braces, and so much more. Part of my disease is that bones break, fracture, and dislocate very easily. So, I wear braces to try to protect my body from getting hurt too badly.



This medication may not look like much. But, it alone costs $600. EVERY MONTH. And it is a medicine I need to have. It is an anti-nausea medicine...so, why do I need one so expensive? This is normally given to patients undergoing chemotherapy. All of my medicine, and the constant dizziness make me so nauseous, without this pill, I am constantly dry heaving. The first prescription was bought with the money from Boyz in Bowties, and made me able to eat for the first time in months. Thank you <3



Another thing it will be paying for are my "pumpers". I get these while I am in the hospital, and it prevents my blood from clotting, and prevents this.... Those are my feet turning a weird red/purple color from blood pooling, and not circulating. This becomes very painful, to the point just brushing my skin causes intense burning. Hopefully, if we raise enough money, I will be able to afford these pumpers. :)


Other pictures of what has been provided for me..




So, I wanted to thank everyone who has donated and supported me...without all of you, none of these things would even have been possible. Thank you for helping me live my life, the best I can, thank you for helping me fight back! We are hoping, with the current fundraiser running, to get a better wheelchair, and a lighter weight one for trips out, because mine weighs 30lbs, and is too heavy to be picked up and brought everywhere. We are also hoping for the pumpers, grab bars in the house and bathroom, and various other supplies and equipment to help me. www.giveforward.com/supportdestiny Also, located on the right. You can donate even $5...anything helps. Thank you <3

I also wanted to thank Sandy, Charlie, and their family, and my auntie for giving me a place to live during all of this. I cannot say how much it means to me, to be taken care of by people I love...thank you...and a HUGE thank you to my Life Care nurse, Lynne. You are by far the nicest nurse I have ever had, and I always look forward to you coming...you make this disease, and all my treatments bearable by helping me through them. Thank you for being so gentle, and taking the time to listen...<3 <3

Sunday, July 29, 2012

Don't want a blanket? No problem!

A good friend of mine, Jenna Smith, had given me this idea a few weeks ago. I began toying with the idea, but I did not want to seem like I was begging for money...

As you all know, Project Destiny was sarted as a rotary project, and we have had many people ask, well what if we do not want a blanket, can we just donate? Is there a place to donate online?

Yes, now there is.

www.giveforward.com/supportdestiny

This site will allow you to make a donation in whichever size you would like, or ti simply send a "hug"  The hug lets you write me a message of encouragement, or just a simple note to say hellow.
This post goes along with my last post, on my own blog,  choosing to live my life transparently. (fightdysautonomia.blogspot.com)

I need help, so I am going to ask for it. My insurance, while we have gotten it to cover some of my medications, still refuses to cover all of my equipment, and some of my hospital stays, and some of my treatments.

The new treatment they want to start me on is something called IVIg.

  • IVIG is given as a plasma protein replacement therapy (IgG) for immune deficient patients who have decreased or abolished antibody production capabilities. In these immune deficient patients, IVIG is administered to maintain adequate antibody levels to prevent infections and confers a passive immunity. Treatment is given every 2-3 weeks. In the case of patients with autoimmune disease, IVIG is administered at a high dose (generally 1-2 grams IVIG per kg body weight) to attempt to decrease the severity of the autoimmune diseases such as Dysautonomia. Currently, IVIg is being increasingly used off-label in a number of pathological conditions; the increasing world-wide usage of IVIg may lead to shortages of this beneficial drug.
My nurse expained to me the other day...It takes 1,000 donors for me to receive half of one treatment (10g)...which means this medication alone costs $20,000 EVERY MONTH. It is not a life saving drug...Therefor, my insurance will not cover it. It is not like the ER, where you go in and they HAVE to treat you...I have to pay $20,000 everytime for this treatment, before I receive the treatment.

This is obviously not my only expense...medications, fluid treatments, heart cath covers, shower chairs, my nurses at home, gas for driving to various appointments, and so much more I need to pay out of pocket for.

My disease has rendered me wheelchair bound, or on bed rest. So, I am unable to work...meaning, I have no current income.

This site, www.giveforward.com/supportdestiny Is a site where you can make online donations, and at the end of the 2 months, they will send me the check. They take $70 out of each $1,000 raised. My current goal is $5,000...

Please, help me in the fight for my life.



To love someone with a terminal/chronic illness

To love someone with a chronic illness is to be a doctor.

It means helping them to remember their medications. It means driving for an hour to the only 24 hour pharmacy when your local CVS does not have the medication they need. It means helping them to know when their normal symptoms turn into something serious that requires more attention. It means driving them to the emergency room in the middle of the night, holding their hand in countless waiting rooms, talking with their doctors, and knowing their diseases almost as well as they do.
To love someone with a chronic illness is to be patient.

It means knowing that some days they won’t feel good and there will be no visible reason. It means canceling long term plans when suddenly they don’t feel well enough to go on a trip. It means waiting to go to bed while they do their night-time medication routine. It means knowing that preparing to leave the house, for any reason, can be a time-consuming ordeal.
To love someone with a chronic illness is to be a counselor.

It means consoling them when they’re tired and feel like they can’t do it anymore. It means listening while they try to figure out their new diagnosis and medications, and not passing judgment if they make mistakes. Or, during those tough times, listening to their burial wishes– for when the time comes.
To love someone with a chronic illness is to be a guardian.

It means standing up for them when strangers accuse them of being a drug addict. It means discreetly asking their friends to keep an eye on them when they are testing new medications and don’t know the reactions to their body yet. It means defending them when doctors dismiss new symptoms. It means making explanations, not excuses to family and friends when you have to cancel plans at the last minute. It means not lettingthem walk off into the ocean, and let the water pull them under....not letting their disease pull them down into the deep pit of depression and fear.

To love someone with a chronic illness is to not be superficial.

It means seeing their bruises as beauty marks. It means seeing their scars as evidence of strength and survival. It means kissing their dry lips when they are hooked to IVs. It means learning to look past the mobility aids and medical equipment and being attracted to the person behind it all.

To love someone with a chronic illness is to be smart.
It means investigating new medications, even though they never asked you to. It means listening to them explain their research findings in terms that aren’t “normal” language. It means knowing how to make them smile when they desperately wants to scream.
 
To love someone with a chronic illness is to be selfless.
It means going to a restaurant based off a menu that fits their dietary needs, and planning dates around their limitations. It means going without when money is tight so that you can buy their medication instead. It means learning how much more difficult normal daily activities are for them, and scheduling your time around their time.

To love someone with a chronic illness is to be brave.

It means keeping your chin up while they talk about those scary, painful moments. It means keeping a positive attitude even though all of the websites and doctors tell you that their life expectancy will be far too short.

To love someone with a chronic illness is not easy.

It means putting their medical needs before any other finances. It means worrying every moment whether or not they are okay, especially when you aren’t with them. It means trusting their life in the hands of so many doctors who do not know them, or love them, like you do.


Thank you for loving someone with a chronic illness.
All above pictures are me. The thing that looks like a IV is actually a catheter that is threaded directly into my heart. The first picture is me with my oxygen mask, and various other medical machines.

Tuesday, July 17, 2012

Eyes are clouded with tears...Thank you!

I can barely even see the keyboard as I am writing this.

I cannot even begin to put into the words of the love I feel swelling through my heart, the joy, but yet confusion swimming through my brain. I cannot put words to each tears dripping from eyes down my cheeks.

As most of you should know by now, I was part of Rotary Youth Exchange in 2009/2010. I then was an outbound to Ransbach-Baumbach, Germany...where I lived with 2 extraordinary and very dear to my heart, families.

Rotary, and specifically Rotex (student who have gone abroad and returned) have become my family since I have returned. These are the people I call when I am excited, sad, scared, or simply bored. These people mean the absolute world to me...and the most amazing part of my family, is how it continues to grow each year. Rotary sends new outbounds out every year, and when they return, they in turn, become Rotex members. New brothers, new sisters...new family.

As most know, the story behind Project Destiny...Rotex started this project (selling blankets) in my name in order to help me with my medical expenses. There was also the Boyz in Bowties carwash for a cause...that was beyond amazing.

This past weekend there was a huge conference...known as Grand Rapids conference....over 1,000 exchange students gather in Grand Rapids, Michigan at Calvin College...we get to hear amazing speakers, and literally meet people from all over the world.
Rotex, and specifically Jenna Smith, Shayle Murray, Claire Larson, and Nik Sperberg, sold blankets, buttons, came up with new fundraising ideas...and even, (dead serious here) for every $20 donated, Shayle would pull up his shorts...until they were wayyyyyyy shorter than bootie shorts...Quite the sight to see..

Anyways, they raised around $1,000 in ONE weekend!!! This is so beyond amazing...

I cannot believe the generosity in people's hearts...specifically those connected with Rotary. I am so beyond blessed to know these people.

What we have decided to do is donate some of the money to the Dysautonomia National Research Foundation. and have the rest go into my account and continue paying for medicine, treatment, equipment...overall an improved quality of life.

I wanted to thank everyone for their kindness and dedication this weekend. I am o beyond touched...And simply amazed.

Thank you. Thank you. Thank you. Thank you.

<3 <3

Please check out:

Facesofdysautonomia.blogspot.com

To read other stories from real people suffering from Dysautonomia.

Also my own blog at:

fightdysautonomia.blogspot.com

:)

Thursday, June 28, 2012

More info??

Hi Everyone...

I again wanted to thank everyone, and ask everyone to check out the Clintonville Chronicle newspaper this next week, or the week after...they are running a feature on Dysautonomia...written by my bestest friend in the entire world, Lauren Lawson...thank you my love!!!!


Also, please check out my blog at: fightdysautonomia.blogspot.com

At the above website I write about my daily struggles, tests...etc, and how I deal with everything.

Thank you!!!!!!!

<3 <3 <3