Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Friday, December 26, 2008

After Christmas Glow

Yes, we are one of those who celebrates Christmas. Tree and all. The ormaments handed down from my husband's mother. The trinkets that play music I have been collecting for the past seven years and my mother's old tablecloth that has been the treeskirt for three years running now.

It was a very good Christmas time on many accounts. I cooked up a storm (120 cookies, two pies, lasagne and a stuffed turkey) and had my hubby's mom and dad over on Christmas day. We sat and watched movies, returned good wishes over the phone and generally enjoyed the whole thing.

I could mention one downside: visiting my brother- and sister-in-law on Christmas Eve, but I won't. There was enough misery in that house. Let it stay there.

For us, we ate too much, forgot to read the bible story of Jesus (sorry, Mom and Dad!) and generally laughed and had a good time. It was one of the few times that I felt truly at home, at the top of my game (domestically) and enjoyed everyone, my husband included. We can rub up against each other sometimes. But, yesterday, was not one of those days.

Another reason for the glow is I received my final grades from school. A B+ and an A! In fact, on both final projects, I received 100% on them! The feeling of accomplishment is overwhelming. I keep looking around to see if people are really telling me that I am this good. Such stuff can really go to your head, and make you think you are on the brink of some sort of greatness. Greatness about what I don't know. Maybe, I am just good at going to school. Perhaps, I am just the best student there every was. I am still trying to figure out how all this will come together into a new career for me. A career that will allow me to take care of the four members of my family later on in life. Perhaps as more classes come along, I will get a spark of an idea. For now, it just feels good to get good grades. I haven't had grades like this since high school!

One thing more that is adding to the glow is my son has not fainted for the entire month of December so far. Five more days and it will really be official. No faints! In fact, today, he only felt tired for one hour after waking up this morning. Mind you, all this is tempered by the fact that he hardly goes anywhere. No school, no walking around outside. I struggle with the idea. But that is for another post. Right now, even if he has to live inside the house for the rest of his childhood, it is good to have him close to his old self. Close to the kid I remember.

I know there are others who celebrate in other religions and in other ways. My hope is that you celebrate in safety and in peace. Pray for those families who have been disrupted by violence this holiday season. Pray for recovery through their grief and some resolution to some of these events.

A couple more days and the new year will begin. My next post may be the usual reflective one I take at this time of year. Take care and hold someone you love close today.


Monday, December 15, 2008

Back in the Bedroom

Yes, that is the title of this post. Because after almost three or four months, I have returned to the master bedroom and am trying to sleep with my husband again.

If I haven't made it really clear, due to his tornado-like sleeping habits and snoring, I have been sleeping on a pull-out bed in the living room. But the CPAP machine is here, so I figured, let's try it for one night.

Bliss. That is all I can say; pure bliss.

He turned over only once and that was a really slow and sleepy turn. No thrashing, scratching, grabbing amid ragged, deep breaths. I could here the machine blow nice, rhythmic puffs of air. And he slept through the whole night. The whole night, I tell you.

I know that may not mean much to you, but after near six months of not sleeping with my husband (if I cared about incurring bodily harm, plus no sleep), it was nice to be in the SAME room with him. I missed it.

Never mind the jokes I have already started to tell him. Hosehead, snorkelpuss. In fact, with three member of the immediate family on CPAP, I have labeled them the Three Masketeers.

No one finds me that funny. I am not really trying to be. I am just happy to have my bedroom back and the husband still in it.

Take care,


Saturday, December 13, 2008

CPAP Heaven

It says something when three of your immediate family members have CPAP machines.

I mean, at this point, my youngest son, my sister and my 2nd husband all have little black boxes sitting on their nighstands. My hubby just got his yesterday and I felt like an old hand at all the instructions. I wanted to know what his titration setting was (6), did he need to go back for another sleep study to confirm his apneas were indeed stopping (not right now) and what was the reorder schedule and procedure (every six months and he will get a call).

I believe sleep apnea is one of the most undiagnosed diseases in America right now. Many people are battling daytime fatigue, drowsy driving and bad memory, and it is due to not enough oxygen at night. Think about it. My son is 12, my sister is 33 and my hubby is 38. All of them did not get diagnosed until this year. What the heck was going on all those other years?

Well, in my sister's case, we have diabetes and a series of strokes. My hubby needed changes to epilepsy meds and stronger doses at that. My son, well, I have outlined pretty much how his autonomic system is a mess.

Which came first, I wonder? Or is it part of the same thing? Right now, the sleep industry is still out on this one. Yes, OSA is linked to heart disease, diabetes, high blood pressure. But how much does it contribute to or cause these diseases? No one knows for sure right now.

So, for this family, yet another member (I am calling them the Three Masketeers now) of my family dons the mask and hose and tries to get through a least, breathing normally. Let us hope that this will avert any future health issues.

Thursday, December 11, 2008

The Disorganization of Dysautonomia

I mentioned in my last post that I wanted to give an update on my son. I wanted to talk about progress. Boy, I am glad I waited a couple of days! No sooner had I started to feel like I finally understand and can "handle" this disease, my young boo-boo goes through three days of unmistakable decline.

It started with him not waking up on time. Part of his sleep issues pertains to his circadian clock. In keeping it short, it doesn't work. There really is no sleep schedule. Heck, there is no schedule in his whole life! I have to be the one to say, "it's time to eat," "it's time for bed," "its time for a bath," etc. Nothing goes off in his head. Somewhere along the line, the ability to regulate and make a pattern out of life doesn't happen. He will go hours and not remember if he ate. Well, first he didn't wake up on time. It was nearly 10am before I saw him. Then he was lethargic. Not a good sign.

Lethargy means that it doesn't matter how much sleep he got, the fatigue is going to set in and take over. He collapsed into the recliner, putting his feet up as high as they would go and shivered. Not good. The heat was on and he is shivering.

He wasn't hungry. Uh, oh. Most parents know that to be a sign of ill health, and he is no different. Not even an egg sandwich with bacon could coax him into putting anything down his throat. Instead, I just made sure he took his meds with milk and let him rest.

The first day he was just tired. The second day, the joint pain began. His wrists, his neck, his back, his foot. He was constantly sitting down and didn't get to any of his chores. He barely got dressed. Meals, what little they were, were served in front of the couch, where he sprawled with his legs propped up. I really should have seen it coming by now.

By the third day, he didn't even want to walk across the street to his friend's house. And sometime right before dinner, he excused himself, promptly sat down and passed out.

I will say, he is always so gentlemanly about it. It never looks like those faints you see on television (he has had these, but we no longer find him sprawled against a door, or half under a table anymore). He can feel the weakness coming, the "confusion," he calls it. And I sure have shouted enough, "Sit down, when you feel like that!" Well, that is what he does. Sit down and pass out. Nice and neat.

Yeah, until he wakes up. Then he is is monosyllabic, drooling lump with little coherence and less responsiveness. It is best just to leave him be, propping his legs above his heart until he is over it.

The good news (yes, there is good news!) is that with the meds, he recovers faster. Two or three hours instead of two or three days. I am hoping we will be doubling his florinef again soon. Hopefully, that will stop these infernal faints for longer than a month. He has been having at least one once a month now for the last four or five months. Not a single break! Just as I get hopeful that he can make a month, the spiral starts.

Today, we were back to the joint pain and fatigue and little appetite.

I started this post because I am frustrated. I know there are others who are dealing with worse when it comes to dysautonomia/POTS. I know there are children who can't get out of bed at all. Children with IV lines because their stomachs can't take in enough fluids. But I just want some sort of routine. Some sort of normalcy. Don't tease me with a few good days only to snatch them away.

And when does this thing start to get better? The stat is 80% go into remission. I am trying not to be impatient, but realistically, my little boy has been getting worse for five years now; since he was eight. Are we on the upswing? Or just leveling out? No one has answers, except the mantra to ride it out. Yeah, that only means his whole childhood.

No more school, no more sports; no bicycle rides or skateboard tricks. No walks in the woods or making scarecrows. We barely get to the library these days. Nothing but: take this bunch a pills, dring 2-3 liters of fluid a day, don't forget your Miralax, get dressed, brush your teeth, go to sleep, put your feet up, let me take your temperature, your heartrate is too fast-sit down, blah, blah, blah.

*Sigh* Yes, I am venting. Sorry about that.

I guess a lot of this is coming out because we have to see a psychologist next week to discuss my boy and Social Security. I loathe the entire thought, and yet, I will be there. I guess I am thinking I should sound like those wonderful mothers you read about in the sunday paper. You know, the mother who never stopped believing in recovery and created an entire new child development program to help her child. Now, she tours the world, giving speeches to show us all how it all came together.

I don't feel like that. I feel helpless and sore. Sore at heart and sore in mind. Frustrated and angry. I try not to say it, but I want my life back. I want my smart, energetic little man back. I hate dysautonomia. I hate not having a life and the electric wheelchair that is coming tomorrow. I don't feel gifted or blessed. I feel tired and just want a normal day. A good old-fashioned regular day.

A day when my son smiled, happy to be awake and already impatient with questions of what we were going to do today. Sadly, I realize those days haven't been around for many, many years. And, I miss them. I am sure he does, too.

Sunday, December 7, 2008

Education Along the Way

I have to write about my son and his tutor.

My son, if you recall, has been home since October 31st due to his dysautonomia/POTS preventing him from attending even one straight week of school. I yanked him out amid a bunch of nonsense from the school. I am happy to report, he and I have hit a wonderful routine with his new tutor.

I won't mention names here, but Mr. C is a character. He sounds like some serious old (he will only be 57 soon, but he sound older, if you know what I mean) Southern down and out gentleman. Totally, something out of a novel. In fact, he said his "contemporaries" were Norman Mailer and Tennessee Williams. I can only imagine. How he ended up being a tutor for homebound children...well, maybe that is a story in an of itself. I am trying to pry it out of him, but he is a sly fox and gives very few details.

Back to my subject. They are doing well. My son, having spent most of his life with only Mom, needs male figures in his life and he took to this guy like a bullet slides into a gun shaft. Yeah, that is a strange analogy, but we are talking guys here.

Mr. C is no nonsense, cusses (yes, I don't have the heart to say anything; he sounds so real when he does it), despises textbooks that don't get to the point, and thinks that since he didn't have to learn all that stuff about "farn" countries back in his day, no wonder my son is bored. I couldn't understand his methods at first, but here we sit, going into our third week and my son is actually learning, remembering and participating in a conversation.

Now this might not seem much to you, but for my son, this is a milestone. Confidence has always been in short supply for him and he doubts himself terribly. Here, with this guy, I have seen my son begin to blossom and change.

All this in two weeks? Yes. Two weeks of this booming, southern drawl and an plan of attack that make sure you know "sump'n" before we move on the the next thing. It is beautiful to listen to! Suddenly, my son isn't mumbling with this timid voice, but answering, countering and being squarely honest when he doesn't know "sump'n."

I am not aware whether this can be tested on a standardized test. I am sure that these qualities will not guarantee him an "A" or a "B." But I am so happy to see success in the same ROOM with a textbook that I don't care.

Education is important, but some of the most important things we learn is to learn who we are, what we know and what we don't know. And, if Mr. C doesn't get a lick o' learnin' past that this year, he would have done more for my son than any other teacher has done in his nearly 13 years, including me.

I had wanted to write about how my son hasn't fainted once since he has been home. I wanted to write about how he can wash dishes and sit at the table. Maybe in another post about his progress. But for now, hat's off to Mr. C and reaching a little boy who was floundering in the educational system. Thanks for making sure he is learnin' what he needs to learn.

Take care,


Hearing Loss and other little things

As long as I can remember, I have not been able to hear out of my right ear. No one knows if it was there from birth or shortly after, or what. But the crux of the the matter is I haven't heard anything out of that ear for years.

It wasn't much of a problem most of my life. Children are resilient and I soon learned what side to make people walk on so I could catch all the the conversation. I was in college before I realized I lip-read. And, I avoided crowded places where I would not be able to hear anything over the background noise. All this without knowing even how I lost my hearing.

Not that my parents didn't drag me off to doctors all the time. I saw an eye specialist and and ear specialist twice a year. No one had any answers, or they weren't telling me, but nothing changed. I never got a hearing aid. I just went on hearing the best I could.

A couple of years ago, I had some extensive testing done. I guess I wanted to know what was what. It just seemed kind of strange to not know what was going in your own body. That testing showed profound hearing deficit due to nerve damage. The doctor conjectured that it may have been congenital, meaning I was born that way. And, no, a hearing aid wouldn't help.

I mourned a little, but didn't for long. I mean, I had lived this way for some time already and had adapted. What else could I do?

That was before two trauma incidences in my life.

In 2006, I had a case of Bell's Palsy. A bad one. The whole right side of my face from the top of my head to my shoulders ceased to work. The pain was tremendous and the vertigo that ensued shook my world. I could barely walk down a street for falling to one side. Fortunately, the majority of the symptoms lasted only four months. The vertigo lingered for awhile, but eventually, cleared up so I could walk and drive again.

Fast forward to this year, when I underwent two teeth extractions. Suddenly, the whole situation with the ear thing was back again, and this time, with a vengence. I couldn't even make right turns in walking without the world looking like a 1960's Batman villian hideout!

My doctor, bless his misguided soul, prescribed lots of antibiotics to no avail. Finally, I "suggested" that I see a specialist.

Now, trust me, I am at the point in my life and in my family's life, that I really don't want to see another doctor as long as I live. My feeling is that we have gone way over our quota, but there was nothing else to do.

Off I went, only to find that these doctors were no nonsense, answered questions, swore off antibiotics and got results. If only all this family's doctors could be so efficient!

Within two weeks, I had an answer. It seems that this nerve damage was not just for my hearing, but for my vestibular system as well. In fact, I have very little feeling inside my ear. It may have been a slow progressive loss, but those two traumas pushed it along considerably.

That wass the bad news. There is good news. Treatment abounds.

For now, I am taking Valium - yes, the happy pill - three times a day, along with Meclizine, twice a day and Compazine, once a day.

It works like a charm! Don't ask me how, but the world is right again! Words don't dance, rooms don't shimmy, and I even drove at night withoug incident!

Now, I can feel when it is wearing off, but then, I pop another pill. I know that sounds sad, but I really don't care.

I never realized how much things were moving. I just began to deteriorate. I have been able to read three text for classes this week without a migraine. I still take breaks, but I am not losing my place and comprehension as much. I am not so sleepy and foggy. There isn't this heaviness over my forehead anymore. All this was from a non-working balance system! I thought I was dying or something! Well, maybe not dying, but developing Alzheimer's. It was truly scary.

Here I sit, finally with the world still and me with the ability to function. It truly is amazing what little things can make such a difference in one's life.

I will end this with a plea to everyone to get little things checked out before they become big things. You never know what could be causing so much pain or change in your life.

Take care,