That’s okay, I didn’t have a clue either til a few years ago.
Heres my story:
I decided to get braces and had to have jaw surgery during the process. All of that was fine, but the second jaw surgery was a mistake. It wasn’t a mistake that I had it, it was a mistake of the timing and the drugs prescribed for the pain afterward. I knew that morning there was a very uneasy feeling even as I sat in the chair as the doctor came in, but I didn’t follow that uneasy feeling and stop and reschedule, and I have regretted it ever since.
Please don’t get me wrong, he’s a good doctor it wasn’t the surgery, it was the pills he prescribed for the pain after the surgery. Even when we got to the pharmacy they were concerned, it just wasn’t prescribed much anymore. Dilaudid, four times a day. HUGE BIG MISTAKE!!!!
I basically stayed asleep for all seven days except when hubby would wake me up for protein and more medicine. I guess the purpose of it was to keep me sedated while the worst part of the pain passed. The medicine did its job but the cost of it was great. I don’t mean the cash cost, the price I had to pay afterward, the damage it did to my body, the damage that can never be cured….. gastroparesis.
It took a lot of doctor visits, tests, specialists and finally a few trips to the Mayo Clinic in Florida to find out what was wrong. I had every test there was for a gi problem, and let me tell you, some of them were anything but pleasant. But at last, thanks to a very intelligent caring GI Specialist named Dr. Wang, I had an answer.
There were even more tests, and the final one, radioactive nuclear testing. It was an interesting and tiring and painful day at the Mayo Clinic that day. At least I made a friend and she and I just spent the day together after eating radioactive eggs, and wondering the halls for hours and then keep returning for pictures every few hours, and for me the next three days. We would just walk around with our hands on our stomachs like we were pregnant, at least it brought smiles from others instead of strange looks.
So what does it do to your life? your body? The answer is simple, it means your stomach is not working, paralyzed, dead nerve. Things just don’t digest, and your entire gastro system is affected.
Some people just have a mild case, that can still eat and enjoy life; others moderate that do okay at times, and other times painful flare-ups, and then there is the severe type. That’s when life changes completely as you know it.
Food the thing that is meant to keep your body healthy is basically a painful poison to your body’s gastro system. You eat some type of food, any type of food and it just sits in there, for my body way too long; causing nausea, indigestion, abdominal swelling, sometimes vomiting, among other things, and enough pain to make you want to scream.
Does it go away in an hour or two, no try a few days later when your stomach is treated. So what do I eat, you wonder? I basically don’t. It’s down now to where it is liquids the majority of the time. Protein drinks, not the ones kids love today; its the ones like boost and ensure; and several of them a day, herbal teas, peppermint oil tea, and lots and lots of water.
I used to hate this routine, it was a very low dark time for quite some time. But after a few years I finally have a routine, doctor approved. Proteins, and liquids (Coffee, tea, water) for six days a week. I eat what I want on Saturday, deal with the pain, GERD, indigestion, nausea and bloating and immense pain til Wednesday morning. And then I treat it with prescription medicine and proceed. Each week of every month; every month of every year.
Do I rebel sometimes and eat on days other than Saturdays? Yes. And I regret it immediately, but sometimes the hunger just gets overwhelming, and at times you get to where you’re so weak you can’t go on, without a bite of solid food and tired, oh my, I’m always tired, always. But each time, I eat like that I regret it horribly, even though I needed it, because of the pain, GERD, bloating, indigestion and on and on, it is unbearable.
What’s really hard, people being normal and eating with you in the same room, or Holidays, you want to eat at family gatherings, but you know if you do, it’s going to bring unavoidable consequences. And I struggle with what to do, so do I just drink some tea, and avoid the food, and physically be okay; or give in to all the smells and eat and suffer for hours and days?
It really is a horrible disease. And the majority of people around you can not start to understand how you feel, physically, mentally or emotionally. It’s not a visible paralysis of a limb, a person cant see a paralyzed stomach so they just don’t and can’t understand.
This blog isn’t for any of you to say bless you, or have pity or anything else.
I wrote this very personal story so that others can understand that pain pills can be very dangerous, even when prescribed by your doctor for just a short time. Please, people, be careful, with what you take, and what you do. And if you have this disease don’t give up, life is still worth living, yes there are changes to be made, but you can adapt to anything if you put your mind to it.
For those of you with a loved one that suffers from this, please try to be understanding and supportive. It’s really hard to accept and deal with. There is no cure, only learning what works for each individual and doing your best to take care of yourself. So folks, please do all you can to help your loved one adapt to this new way of eating or not eating whatever the case may be, they need your support, love, and understanding.
And for those of you with such symptoms, search and find a doctor that is knowledgeable and compassionate that can and will help you.
You can and will get used to this in time, and accept it for what it is.
You can and will get through this.
Because your a strong-willed person and life is meant to be enjoyed, no matter what your circumstances.
I don’t think this site would be complete; without stories from my own life. Today that topic is EPILEPSY……
This one is a tough subject for me, I rarely talk about it, but I feel it’s an important topic that should be discussed. You see I have had this disease since I was a very young adult… I have thought long and hard about this particular blog.
Almost didn’t write it….
But then I got to thinking if I can only help one person to understand they are not alone, or one family member to rest a little easier…… well then, opening myself up and really talking will be worth it..
Let’s get started with my story….. shall we?
I still remember the first time I ever had a seizure.….. I was 19 years old and a young mother of two children. I remember waking up with this absolute horrible headache, a bit tongue, a wet bed, hurting all over, disoriented and scared to death. It had never happened before….
I didn’t even know what it was, neither of us did. I had never ever experienced such a horrible thing…. I don’t mind telling you…. I WAS TERRIFIED!!!!!!
We called the doctor and was seen right away. My husband and I explained how I felt when I woke that morning, they examined me, took blood work, and prescribed the first of many different medicines that I would take through my life.
They also sent me to a neurologist and there I had the first of many EEG tests done, that came back normal, by the way. I have learned over the years that sometimes tests are normal even though epilepsy is a part of your life.
I did not know what to do, how to feel. But I can tell you this much…. I felt scared, confused and like my life was over. How could I have epilepsy? What about my small children I have? How will life be now?
There were so many adjustments to make… For me, the biggest one was I could not drive for a while…
You see I have always been a woman that loved to get out and go and be independent it felt like the most horrible, cruel thing in the world you could do to me.
Take away my driving.
I was angry….
Angry that this was happening to me…
Angry that I could not drive….
Angry that people were watching overme….
I felt like people did not understand me anymore,
They did not know how to act around me, were scared if you will.
What if I had one with them there?
People are afraid of change, the unknown…. It’s just human nature.
I was angry over so many things.
But I think that is normal…. and I can tell you it does pass intime….
After a while, I learned to accept epilepsy……….
the medicines, being careful, watching for signs, avoiding things that could triggerthem…..
The flashing lights, not eating, not enough sleep, too much stress, getting too hot.
There are a lot of triggers, but avoiding them as best you can so help.
But I learned to accept epilepsy as a new part of me and was okay with it.
I didn’t have another one, for a couple of weeks.…
But when I did… it was the exact same way as the first one…
But I was so tired afterward, and so very sick. I remember “tossing my cookies” so many times that day and sleeping a bunch. My mom came over and stayed with me and the children, and I just slept.
In time, I learned that the exhaustion is just part of it…………. It was rough, and this is going to sound stupid…
But I was thankful that at least it was while I was sleeping; at least my children did not witness it…
Time passed, and the seizures were still a huge part of my life.
But LISTEN………….. this sentence is so IMPORTANT…….
IT DID NOT STOP ME FROM LIVING……..
EPILEPSY IS NOT A DEATH SENTENCE ……….
LIFE DOES GO ON!!!!
So what, our brain gets all confused and acts like fireworks exploding up there sometimes….
So what that we lose a little bit of time here and there…
So what if we spend a day sleeping and sore.
So what that we see a doctor till we’re sick of them,
So what if we have blood tests till we feel like a pin cushion,
So what if we take enough pills to fill a bathtub.
LIFE DOES GO ON!!!!!
I promise it has been 30 plus years since I was diagnosed….
So see life really does go on…..
Always remember that!!!!
As you adjust to this thing called epilepsy….. you learn how to take better care of yourself…
You learn to eat right……………. get enough sleep.……………….. avoid being up all hours of the night…………. avoid the flashinglights……………. avoid watching tv in a dark room…………. avoid getting too hot………… avoid unnecessary stress.
So see in some ways, you learn to help all of it, by taking better care of yourself….
and we all need to do that…. illness or not!!
You learn a lot about yourself, and ways you can help to make it better……
What works best for you????
You know your body better than anybody…. so LISTEN to it…..
Does all this stop them???
No……….but taking care of yourself can prevent a bunch of them…….
and taking your medicine faithfully, that is important!
I know from experience about taking your medications.
I got to a point where I was tired of taking them…
So I woke up one morning and made the horrible choice not to take them that day, or the next, or the next.
I so REGRETTED it… I had a HORRIBLE HUGE SEIZURE… HORRIBLE!!!
It was actually so bad, I bit an actual hole through my tongue, and had to be treated for that on top of the seizure.
Please…………. DO NOT EVER TAKE YOURSELF OFF YOUR MEDICINES…….
PLEASE…… NOT EVER!!!!
I understand the feeling of getting tired of it all, I truly do.
But stupid choices hurt you, and in turn, the ones that care about you.
I have had times where I have had 100 plus seizures in one years time, to some years without a single one…
What changes it? Well, I’m not sure.
I do know the better I care for myself the less they are.
So try that, okay…
I was actually able to come off medicines in 2006, per the neurologist after I was seizure free for an entire year.
I was ecstatic!!!
I went seizure free for three years straight, no medicines, no anything….
I just knew they were a thing of my past, even took my medic alert bracelet off.
I felt great…all was well!!!
But then…. well, in 2009, I got injured with my head hitting a concrete floor.
That started them back right away, actually while laying on that floor, waiting on the ambulance, and again in the ambulance.
Yes, it meant starting over as I did in the beginning when I was 19, but I kept telling myself……
It will be okay, I was seizure free in the past and I will be again…
I think a positive attitude is important!!!!
Yes, there were a ton more tests, the doctor visits, the not driving, and all the other precautions for a long time.
But I knew it was for mybest and handled that part of it much better the second time around.
They stopped after a few months, thank the Lord!!!
And once again, I was released by the doctor of all medicines, I just had to keep in contact with her.
I was ecstatic once again!!!!
Oh Happy Day!!!
But…… they came back again, in 2015.
I know you’re probably wondering why this time.
Well, I have a neck injury from the concrete floor fall.
The doctors have tried to treat it, and they ordered neck traction.
I had a really uncomfortable feeling about having it, but I just figured I was scared of the unknown.
You know, how we as people are scared of change and new things.
Well, I thought that was it, I was just dreading the unknown….
This does not really pertain to this topic.
But can I give you a moment of free advice?
If you ever feel like something is amiss, or your really uncomfortable about something.
PLEASE…. LISTEN TO THAT NUDGING……..
STOP WHAT YOU ARE DOING, OR ABOUT TO DO…..
LISTEN TO THAT INNER VOICE!!!
It will save you a tremendous amount of grief. At least, that has been my experience…
Okay……back to the story.
I had a horrible sense of apprehension as I walked in, but as I said, I figured it was just fear of the unknown.
Y’all can imagine what I’m going to say next.
They started the traction and about halfway through it, I had a seizure….. first one in six years!!!!
I was heartbroken. I had gone so long without any; how could this be happening again?
But they were simply just trying to help… I realize that nobody there could have known it was going to wake the seizure monster again…
But oh,….. it did. And this time a real monster!!!!
Everything changed… more doctors, more tests, more lab work, more medicines….. and more restrictions than ever.….
Why do you ask?
The patterns had changed….. now for the first time in my life, they were happening at night….. but now also in the day.
It really changed my life this time. They were uncontrollable for a long time.
I actually gave up driving for almost two years this time. And even today, I still have restrictions.
Can I be honest and tell you something?
I got mad, really mad…
I got depressed big time…
I really had a hard time with the epilepsy monster being woke back up again this time.
It almost got me down, way down.
The neck injury has changed me in a lot of ways, and not for the better.
The biggest thing now is that it affects my mind.
Ican’t remember like I did, can’t do the cognitive thinking as I once did.
I don’t do well with loud noises and lights etc.
And the memory, well it’s slipping fast.
Please do NOT think all of this is from the seizures, it is NOT!
It is all more from the severely injured neck and other health issues…
But you know what?
I’m still me, I’m a person that simply has some health issues and epilepsy…..
But epilepsy does not have me, it does not define me.
The seizures have become almost nonexistent again.
I have only had one day of bad ones, and it was from an injury in the kitchen.
Word of advice…. never sneeze while using sharp objects in the kitchen.
It might save the edges of your fingers.
So life, as far as epilepsy is concerned is getting better all the time.
I’m even considering talking to the doctor about tapering off the medicine again.
Perhaps this time there will not be any more injuries, and I know there will never, ever be neck traction again, ever.
And even though I may not be able to think like I did, and some things are different…….well, that’s okay too.
Because it all still comes down to attitude.
Epilepsy is not a death sentence. Nor is the damage from the seizures.
Sure there are good days and bad days, but those good ones make the bad ones tolerable.
Life goes on, I’m still me, your still you…..
Were both still here and life is soooooo worth living…
Remember you are a wonderful person, that just simply has epilepsy…
Life is worth living, life can be really great…. don’t ever let it get you down.
A healthy attitude, good lifestyle choices, and precautions can make a world of difference in your life.
Remember you are not alone, and the more you learn, the less scary it is.
Knowledge is power……. So learn all you can.
But most important of all,
TAKE CARE OF YOU!!!!
YOU ARE SO WORTH IT!!!!!
to be continued…… part two: Your loved ones and epilepsy!!!