It’s Been Forever…

This started out as my (our) journey with Epilepsy.  See… it says so right there in the URL of the blog. That’s what it was supposed to be.  That is what it was supposed to be.

So… I’m sitting here, proverbial pen in hand trying to wrap my head around all of the stupid days like no other.  I really don’t want any more of those days.  I really don’t.

I’m thinking of the litany of things that I don’t want to know.  RA… Sjogrens… Epilepsy… Aspergers… gastroparisis… COPD… and I wonder what all else.

Epilepsy… what started this blog… has taken its place at the edges of our lives.  Squirrel hasn’t had a seizure since 2010.  She and monkey butt have both gotten their licenses.  Neither are actively seizing.  Monkey butt hasn’t even taken lamictal in over a year.  It’s still there.  It is still a specter that haunts, but it only (currently) haunts the recesses and dark corners.

I hope it stays there.

RA/Sjogrens/Raynauds… those have their own special place in my other blog.  They are my burden, although they seem to be bleeding over into the lives of my children.  Monkey butt struggles a lot with his but he frequently forgets to take his meds and I don’t know how to help and not hound.

But here I sit… the cross I bought at Notre Dame Cathedral after we made it to the top and back down buried deep in my pocket. It’s wood.  It’s smooth edges are comforting.  It’s warm and it fits my hand.

This blog does not post directly to my Facebook page and that is good, at least for now. I may move the discussion later, after we have more answers but for now, it lies here not quite hidden but at least not where someone who is as scared as I am will quickly and easily accidentally run into it.  Sometimes hiding is okay.  Sometimes it is good.

This morning, as the house sleeps, I am very afraid.  Bear went to his December doctor appointment yesterday and they got to the point in his care that they are “ALLOWED” (that absolutely pisses me off that we have to follow the bread crumb trail laid out by the INSURANCE companies before we can get answers) to move on to the next in the series of testing.

Today we go for the Pulmonary Function test.  It was supposed to be scheduled in two weeks but when they took his oxygen levels at his appointment yesterday they moved it up to today.  In about an hour and a half we head out to where he will get this test done.  Today is Wednesday.  Tomorrow is Christmas Eve.  Monday we have a CT scan scheduled on his chest to see what it has to say.

He is terrified.  His nurse sister thinks it is not lung cancer… “only” COPD.  I’ve been digging.  And praying.  I’ve been trying not to vomit.  I’ve been trying not to cry.  I’ve been crocheting my ass off on a project that I dreamed up.  I’m trying not to vomit.  I’m trying not to cry.  The candle light flickers by my side.

So here I am… on yet another day like no other.  It’s a perfectly ordinary day.  The wind is blowing.  The street out in front of the house lays wet in the streetlights.  The dog (and my Squirrel girl) lay snoring softly in the next room.  My fingers and my knee are reminding me that I hurt.  I kind of didn’t need to be reminded, but there you go…

Keep me close today.  I think I need to be kept close today.

Nephroptosis, Yes, it IS a Thing

So, I’ve been hearing about people who are seeing doctors that either think they are imagining the pain they are in, that they are seeking attention, or that they really don’t need to be helped.  It makes me sad and it makes me angry.

We got lucky.  We accidentally got an appointment with a different urologist in the practice my daughter was going to when she was in extreme pain.  Her usual one was writing it off as kidney stones passing (the pain) and told her to just lay down and suffer through it.  Trouble was, she was suffering through it for days and days and days.  We had to take a puke bowl with us no matter where we went.  She had to lay  down on the back seat of the car because sitting up made her puke and almost pass out from the pain.  In frustration, I called the doctor to be seen.

She was seen and the doctor (her “regular” was out town) who saw her TALKED to her and LISTENED to the answers.  He said he thought he knew what was wrong and sent her for tests.  He was right, and she was diagnosed with Nephrotposis.  Most doctors have to google it, or sound it out and guess the meaning.  We got lucky.  She was seen and it was diagnosed and she got surgery and she is now pain-free (well, until she actually DOES pass a stone and that is short lived).

Nephroptosis is one of those things that you don’t hear about.  It is pretty rare.  But it IS a thing!!!

While I don’t encourage anyone (especially my  daughter) to go googling around for what might be causing the symptoms that she thinks she has, if you landed here you probably already have and have a pretty good idea what is going on in your body.

THESE websites are clinical websites (one is even from the US government) that show it’s real and that surgery usually helps if you are not asymptomatic (and if you were asymptomatic, you sure wouldn’t be at the doctor because you wouldn’t actually… you know… KNOW about it.).

http://emedicine.medscape.com/article/1458935-overview

http://www.jenkinsclinic.org/conditions/kidney-ptosis/

http://www.ncbi.nlm.nih.gov/pubmed/9258063
http://www.ncbi.nlm.nih.gov/pubmed/941371

The last two (from US National Library of Medicine National Institutes of Health) are a bit dated (from the 70s) but let’s face it this isn’t a fancy condition and when you’re not a sexy condition you don’t get a lot of funding or attention.

It is real and we need to let our voices be heard.  They thought I was molly-coddling my daughter until they found out that sometimes what is real is real.

Purple Day… Awareness…

purple day

It’s purple day again… March 26th… Epilepsy Awareness…

 

A day to reflect… a day to look forward in hope… a day to help raise awareness of such a misunderstood condition…

 

You can’t swallow your tongue during a seizure. It’s physically impossible.

You should NEVER force something into the mouth of someone having a seizure. Absolutely not! Forcing something into the mouth of someone having a seizure is a good way to chip teeth, cut gums, or even break someone’s jaw. The correct first aid is simple. Just gently roll the person on one side, support their head, protect from injury, and make sure their breathing is okay.

DON’T restrain someone having a seizure. Most seizures end in seconds or a few minutes and will end on their own. You can protect the person from injury by following simple first-aid guidelines.

Epilepsy is NOT contagious. You simply can’t catch epilepsy from another person.

Anyone can develop epilepsy. Seizures start for the first time in people over age 65 almost as often as it does in children. Seizures in the elderly are often the after effect of other health problems like stroke and heart disease.

Most people with epilepsy CAN DO the same things that people without epilepsy can do. However, some people with frequent seizures may not be able to work, drive, or may have problems in other parts of their life.

People with epilepsy CAN handle jobs with responsibility and stress. People with seizure disorders are found in all walks of life. They may work in business, government, the arts and all sorts of professions. If stress bothers their seizures, they may need to learn ways to manage stress at work. But everyone needs to learn how to cope with stress! There may be some types of jobs that people with epilepsy can’t do because of possible safety problems. Otherwise, having epilepsy should not affect the type of job or responsibility that a person has.

Even with today’s medication, epilepsy CANNOT be cured.

Epilepsy is a chronic medical problem that for many people can be successfully treated. Unfortunately, treatment doesn’t work for everyone. AT LEAST 1 million people in the United States have uncontrolled epilepsy. There is still an urgent need for more research, better treatments and a cure.

Epilepsy is NOT rare. There are more than twice as many people with epilepsy in the US as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined. Epilepsy can occur as a single condition, or may be seen with other conditions affecting the brain, such as cerebral palsy, intellectual disability, autism, Alzheimer’s, and traumatic brain injury.

You CAN die from epilepsy. While death in epilepsy doesn’t happen frequently, epilepsy is a very serious condition and individuals do die from seizures. The most common cause of death is SUDEP or Sudden Unexpected Death in Epilepsy. While there is a lot we still don’t know about SUDEP, experts estimate that one out of every 1000 people with epilepsy die from SUDEP each year. People can also die from prolonged seizures (status epilepticus). About 22,000 to 42,000 deaths in the US each year occur from these seizure emergencies.

What happens in a seizure may look different from one person to another. However, seizures are usually stereotypic, which means the same things or behaviors tend to occur in a person each time they have a seizure. The seizure behavior may be inappropriate for the time and place, but it is unlikely to cause harm to anyone.

People with epilepsy are usually not physically limited in what they can do. During and after a seizure, a person may have trouble moving or doing their usual activity. Some people may have trouble with physical abilities due to other neurological problems. Aside from these problems, a person who is not having a seizure is usually not limited in what they can do physically.

<http://www.epilepsy.com/learn/epilepsy-101/facts-about-seizures-and-epilepsy&gt;

 

Four years have passed since we have joined the not so exclusive club.  Four years realizing that there are still so many ways that misinformation exists… so many ways that more glamorous conditions are funded and information is given out.  Four years since Adam found my little girl laying on the floor at the bottom of the stairs (thank goodness she was sitting three steps up) in a tonic clonic seizure.  We have come a long way in four years… but we really haven’t.  I look at my babies with pride but I know that it is a specter that will shadow them forever.

 

Holding the proclamation

Why… How… mostly Why…

I’ve been quiet… too quiet… and I feel very guilty for that.  It’s been a long hard few months and I need to get back to finding myself.

This week, Adam has an epilepsy doctor appointment.  He has been seizure free for 2 1/2 months.  I face September with a sinking feeling… he has been seizing about once every three months… and we are coming up on that now.  I worry.  I can’t do anything about it… but I worry… what if he seizes when he’s on the bus between school and where I pick him up…

Amandya has gotten back to stable.  The absence seizures that were surrounding her gastroparesis treatment have gone away and she is back to being seizure free.  I worry.

Yesterday we were in Walgreens waiting for my Flu shot and my Hepatitis B shot.  While we were there, a woman about my age was there trying to get her first prescription of Keppra XR.  Turns out that Pennsylvania isn’t the only place there is some kind of Keppra shortage.  Go figure.  We got to talking and I think maybe I made her feel a little less like a freak.  I hope so.

She was just diagnosed.    She’s learning the vocabulary of her new normal and reaching out for support.  I hated to disillusion her… our town doesn’t have much in the way of epilepsy support.  It makes me sad.  Given she can’t drive, I didn’t really have the heart to tell her that if she wants support, she should probably suck it up and get someone to drive her 90 minutes south and hope like heck they have something she can sit in on there.

I want to help… I want desperately to help.  But I feel so much like I’m jousting at windmills and only the wind is on my side.

A little catching up to do… but I’ll get there

Hey everyone – I just wanted to tell you about a new activity I’ll be doing this April. The Health Activist Writer’s Month Challenge hosted by WEGO Health. I will be writing a post a day for all 30 days. I hope you’ll join me in writing every day about health. It’s going to be a lot of fun and I’d love to see what you have to say about each of the topics, too. All you have to do to join is sign up here:http://info.wegohealth.com/HAWMC2012 and you’ll be able to start posting once April rolls around. Looking forward to writing with you!

Reflections On Purple Day 2012

So… it is the day after Purple Day 2012.  Yesterday I wore my Anita Kauffman T-Shirt and my purple Buff headwear… I was reflecting on Adam’s week last week in the video EEG room… trapped… with only marginal responses.  The doctor suggested it would be a good idea to take pills.  Skinny butt said that, if he had another big seizure, he would, but unless he had one, or could have a definitive diagnosis, he would not take them.

Jump forward three whole days.  Ironically… on Purple Day… the International Epilepsy Awareness day… He had another major seizure.  He went to spend the day with his friend at a local large university.  It was a day like any other.  Late afternoon… my cell phone rings.  It’s Adam.  Adam NEVER calls me.  He texts me… he sends me jokes… he never calls…

My first thought… he got hurt or mugged…

Nope.  He had a seizure.  Sixty miles from home.  Thirty miles from me.  I know he’s 20, but he’s my little boy.

How do I find one skinny little (6 feet tall) boy on a huge college campus?  You keep calling since he is awake and kind of alert and see if he can help you navigate.  Fortunately his friend got out of class and helped, too.  I was never more relieved than when I saw them walking across campus… his friend steering him the way I used to when he was little and playing with his game boy.

So… now we start the Lamictal and see if that keeps him from seizing again… and we start counting officially… we are one day seizure free for him… 19 months seizure free for Amandya… the adventure  continues…

The Saga Continues…

So… it has been an amazingly long and awful week.  I feel like I got hit by a truck, physically, from the stress.  I feel like I’ve been beaten up by a rabid baboon with a baseball bad in one hand and a taser in the other hand.  I’m ready for the baboon to quit.

In the awfulness (well, that word isn’t a good word, but it did pass spell check so I guess it IS a word) of the week, the news that I was right and that we now are the proud owners of two kids (neither actually “kids” any more) who have epilepsy.  Adam’s been having seizures that no one realized were seizures for years.  I feel like a horrible parent.  I didn’t need help feeling like a horrible parent this week… but I will be fine.

Adam has been having these…

Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. “Myo” means muscle and “clonus” (KLOH-nus) means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle.

His Tonic Clonic seizure from just before Christmas was the impetus to go see the neurologist.  I’m worried that this may be getting worse.  I’m worried that it will get worse.  He doesn’t think he wants to medicate the myoclonic seizures away.  He has been having them for so long (years and years… even his pediatric neurologist blew them off as nothing so I guess I shouldn’t beat myself up too much… but years and years and I didn’t help him be fixed).

In the next few weeks, he will have his brain MRI and his 20 hour EEG.  I didn’t realize that they would hook him up in the doctor’s office to the wires and have a monitor hooked up to him to gather all of the information for almost a whole day.  A month from tomorrow we will go back to the doctor to find out what all of his findings are.  Depending on what he finds, there may or may not be more tests.

If you see a pattern of  ‘twitches’ that include arm jerks and neck jerks but that occur when you are having a perfectly normal conversation or just at random times (not when they are falling asleep, that happens to most of us)… pay attention and push people to pay attention too!!!

Yes, I will be fine.  Yes, I will eventually stop beating myself up over everything.

For now, it is who I am and what I do… and I’m trying to deal with having to broken kids who I feel like I’ve let down…

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