Life With No Cure

A cure.  Something that is so simple is something that is out of reach for so many.  A cure is defined as a substance or treatment that cures a disease or condition.  To many, all they need to do is receive the cure to what condition they have.  However, the two of us are not one of these people.  We are the people who desperately want a cure, but know that we most likely will not be able to get one.  We are forced to settle for various treatments and other methods to cope with these various medical conditions.  While a treatment is progress, it is not long term, and it does not magically take away all of the symptoms of the condition.  
People always say things along the lines of “hoping for a cure.”  While hope is great, hope only goes so far.  I mean, a cure means that there is no more disease, and that you are healthy.  You do not know and probably do not know what we would do to hear the words that there is a cure for what we have.  We would probably do just about anything to receive a cure.  To no longer be bound to various medications, no longer having to be dependent on doctors, to finally be able to live a healthy life.  
You may wonder what it is like to be living without the hope of a cure.  Let me tell you, it’s not great.  For one, you do not have much freedom.  This meaning that you are tied to your doctors, clinics and other healthcare professionals.  It means that you cannot do a lot of spontaneous things.  For example, you have to plan out your daytrips carefully since you might have an appointment, or have to take a medication at a certain time.  You have to be careful when you make any type of plans, because you never know if you have something to do that day.  Or, you worry that you may have to call off the plans due to a bad flare.  
Having no cure means that you have to deal with all of the symptoms.  Now, you may have a treatment which does help with the symptoms in some form, but they are never truly gone.  Living with these symptoms can greatly limit things.  These symptoms (for us) can include muscle spasms, dizzy spells, headaches, tachycardia, and countless others.  With treatments some of these symptoms can be helped, but not always long term.  The treatments may not be long term because they only last for a short period of time, or simply that your body gets use to the dose.  Now, we are able to have a life (to some extent) and we are grateful for that.  However, we would still love to be able to live symptom free.  
Living with no cure also takes away some of the hope away (let’s be honest, sometimes it takes away a lot of hope).  When you have the hope for a cure, it can be that one thing that keeps you going.  When you do not have any of that hope, it takes a toll.  Some days are better than others, but for the most part, it sucks.  You do not have much to look forward to, because you are waiting for that one in a million miracle.  Also, our conditions are so rare, there isn’t much in the way of research.  With little research, there is little in the way of a cure.  We do not want to sound negative, but there are downsides.  These downsides can take a toll.  
Living with no cure means that you have to explain that there is no cure.  No one truly gets how you can be receiving treatment, or be on some sort of medication and have no hope of recovery.  We cannot tell you how many people have walked up to us asking when we'll FINALLY be cured.  Then we have to explain that there is no cure coming in the near future.  That’s when things get a little bit awkward.  Most people do not know how to respond to hearing that there is no cure.  They want to be able to look forward to this all ending, and it simply will not happen.  
Having no hope of a cure hurts.  While there are at times treatments, they do not always work perfectly.  And that is if you can even receive them.  We do not want to sound as if we are trying to be super negative, it’s just how our lives are.  Life without a cure isn’t all sunshine and rainbows.  You have to learn how to roll with the punches and accept it.

WE BELIEVE IN YOU!


-Nemo, Tremors and Secret Agent Puppy

Comments

Post a Comment

Popular posts from this blog

"WHY WOULD I WANT TO DATE YOU?"

Let’s be honest here, dating can kinda suck.  I mean, it is really hard to find that perfect someone when you are in college like us.  We both know that miracles do happen, but when you have a chronic illness it becomes a million times harder.  There are a lot of things that make this more difficult.  Dating is already hard enough, so when you put chronic illness with trying to find a decent human being, you have a bit more trouble than the normal person.  Here we decided to discuss our dating / lack of dating lives.  Because we know from experience that it is super hard to find someone when you are chronically ill.  Let’s just say that while we hope to find someone one day that can see our good qualities, we know that may not happen.   For many people with chronic illness it can be difficult to leave the house. This leaves online dating. Just like any “normal” / healthy person, you can find some creeps while dating online.  Let’s just say that we have met quite a few of those onli
Read more

Things Professors Have Said...

            We are both college students, and in college we have had both good and bad professors.  Some professors are amazing, while others make you want to hide in your room and never leave your bed.  Sadly, we have had a few of those in the later category.  We decided today to discuss some memorable quotes from professors in both of those categories.  We are not doing this to be cruel, and we are not including any names, or descriptions.  We are doing this to show how tough college can be for those with chronic illnesses. THE WORST:             These are some things that were said to us over the past few years.  While not all sound rude, or insensitive at first, the meaning behind them are not great.   “It’s so nice that everybody here [in this class] is healthy” The first thing you have to know about our class is that multiple people have accommodations and I (Nemo) bring a service dog to class.  We are not the only ones with accommodations, or medical problems in o
Read more

Service Dog and Medical Leave

Image
                                                                              Even though I have spent a year on medical leave, I have been incredibly lucky. This year would have been much harder had I faced it alone, but I didn’t have to. A year ago I first met secret agent puppy. The most nerve-wracking time was flying across country to meet him for the first time. I was so anxious, worried that he wouldn’t like me, worried that his trainers wouldn’t like me. I wanted this to work so badly, because I desperately needed him more than anybody knew.             I have been fighting with my conditions for the past twenty-three years and it gets tiring. There are days where it would be so easy to give up, and feeling alone while everybody else is living their life just makes the situation worse. Prior to considering a service dog I got sick enough to have to leave nursing school, move back home, drop classes in OT school, and was facing leaving school all together which e
Read more