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,


Sunday, November 30, 2008

Sad state of things

I am not feeling very good right now.

My Critical Thinking grade has slipped to a C. Why, because I have been too sick to remember to post an assignment. A whole assignment!

When I think that to the day it was due, the 23rd of November, I was in bed with a blood pressure of 154/107. I could barely stand up. In fact, if I stood up, it shot higher. That little episode lasted 2 whole days. No warning when it showed up and no warning when it went away. I barely remember the days of that weekend at all. I remember trying to clean my house in preparation for Thanksgiving and not getting much done. My vision was blurry and cloudy. I actually remember trying to do the assignment and not having the brain power to know whether my answers were really correct or not.

This has become quite unbearable. This week, it was my cycle that took out 2-3 days of the week. Pain, cramps and unbridled fatigue saw me more in the bed than out of it. Moments of lucidity were far and few in between. I did prepare Thanksgiving dinner on Thursday, but the cycle started Thursday night, and I don't remember too much of Friday and Saturday. I remember today. Even today, I had a major nap.

This napping thing is becoming a major problem. It could be the vertigo meds. I was told it can make you sleepy. But what about losing big chunks of memory? I just don't know.

I submitted the assignment late. I have no idea what grade I will get on it. No, I haven't told my instructor I am ill. I don't know why not. I am proud, I suppose. I hate to always whine about how ill I feel. No one wants to hear that. I hate to have to "take it easy" and give up things and dreams. I hate loss and having to voice it. If no one knows, no one will ask me "how I am feeling today." I don't have to disappoint anyone in saying I still don't feel well or better. Yes, I am a big faker, but this kind of faking it, I like. I feel better about it, because, it is my secret of sorts. Yes, I am blogging to the world and anyone can see it, but my classmates do not come here nor my instructor. I am not sick to them, and that matters to me.

In my last block, I became ill, and used two software programs to stay up with everyone. No one knew but one instructor and my enrollment counselor. This block, the reading is so long that I cannot get through it. I highlight what I can and move on. This time, I tried to keep it to myself and this blog. It caught me off guard when my enrollment counselor knew I had fainted. Silly me, I had given him my blog address. And he came here and read up on that little event.

*Sigh* I am not sure how to handle this. There are 3 more weeks left before a winter break. I will see one of my docs next week. Hopefully, he will give me some advice and some help. I don't want to stop school again. I don't want to fail. I have some soul searching to do.

In the meantime, I have three weeks to possibly get back to a B. That would make me feel better. Like I wasn't so sick. Like I could make it for once.

Take care,


Wednesday, November 26, 2008

Where Have I Been

Hello, there.

Yes, I have been quiet. Things have been a little rough lately with the vertigo. If you remember, I fainted a couple of weeks ago. They lined up a ENT appointment and then inner ear testing. Stuff I have never heard of. Always makes you think that there are people in the world busy doing something you have NEVER heard of and making pretty good money at it.

Anyway, I had to stop my meds before this test. Well, that wasn't easy, but I complied.

Only for the worst two weeks of my life to ensue!

Simple car trips became unbearable. In fact, driving with my husband at all became unbearable. My own driving (what little I still do!) suffered. In the middle of driving, the whole world would just shake back and forth; real fast like. Okay, not something you want to have happen on a major thru-way. Then, once I came home, I was out. I mean, asleep.

Yesterday, it was for three and a half hours.

On top of that, it has affected my brain in other ways. I couldn;t concentrate, couldn't read well(my eyes going back and forth over the page produced blurriness and I felt like I kept looking at the same sentence), couldn't seem to comprehend what I read (out of four chapter, I got down 2-don't ask me what it means, though). Even though my grades are still good, it was the worst time I have had so far, and I lost points just because I couldn't finish an assignment or spend the time researching my answers. Technology wasn't the problem here. The operator (me) was just out of it.

Well, the other thing I wanted to tell you is sometimes, it is good to flunk something. I flunked those ear tests so bad, it wasn't even funny. By the time I left, they were treating me so tenderly because they didn't think I could walk down a hallway safely.

The worst one was something called a caloric stimulation test. No, it has nothing to do with eating. They put cold and warm air in your ear, which is supposed to make you dizzy and feel like you are floating. It's like testing to see if the system works. Well, the left side did, but the right side? Can I tell you that I felt nothing. Not only did I feel nothing, but to me, the room got clearer, settled down and I could think straight.

Now, I don't need a degree in Otolaryngology to know, whoops, there is a problem here. How can I have one side working and the other side mute? I mean, I didn't even feel the temperature deep in my ear. I know I couldn't hear in my right ear, but no feeling?

In a short phrase, the answer I have found on the internet is nerve damage.

How severe? I have to wait until December 4th to find that out. Also, I guess they will tell me what I have to do about it. The tech mentioned physical therapy (I walked into another room, supposedly marching in place with my eyes closed!), but I am skeptical. I know I shouldn't be, but I have been off-balance for years (if I ever got pulled over, I am going to jail. There is no way I can walk heel-toe at all!), but now it is worse. And does this tie into my three faints this year or not?

What a wonderful web this is turning out to be! I will update when I get more answers.

Take care,


Tuesday, November 18, 2008

Here is the Letter I Wrote

Part of the benefit of writing things down is you get to look back at what you were feeling at a particular moment in time, and ponder any new thoughts on that subject. Reading the letter I wrote to the school regarding my son's need for Home and Hospital let me realize what a mistake it was to even go down the road we took this year. He should have started in H&H from the start. Hindsight again is 20/20.

Here is the letter. Sorry for the length.

Friday, October 31, 2008

To Whom It May Concern:

This letter is to request that ___, student at _____ Middle School, be placed in the Home and Hospital Program. This decision comes after attempts to secure a rewarding and successful 7th grade education for ____ within the school building.

______ has a myriad of diagnoses that hinder his ability to maintain attendance in a regular school day. We requested an aide for _____. We were denied. The reason given was that there was not enough evidence about his condition to support employing a full-time aide. We understand that _____'s condition is not well known or understood, but we were not fully given an explanation of the appeal process in order to increase anyone’s knowledge. When I asked about an appeal process, I did not received sufficient information in order to file one.

Without an aide, ______ must juggle his paperwork, books and manual wheelchair, often pushing himself to each class. This is counterproductive to the requirements of his medical condition. Using energy for this causes him to become more fatigued and less stable. We were in the process of securing an electric wheelchair through our insurance at the time of this letter.

Due to his continued absences, _____ was given an abbreviated school day, which according to what I have been told by Ms. _____, Vice Principal of ____, precluded him from having an aide at all. The reason was stated that the county would not pay for a part-time aide. In this abbreviated schedule, _____ as to have a 15 minute homeroom with Mr. ____. On at least three occasions, Mr. _____ was unavailable for this homeroom and _____ sat alone in a classroom before his 1st period. In fact, on the 29th of October, Mr. ____ was absent and no one was sent to replace him in his role as homeroom teacher for _____.

It has been difficult to secure homework for _____ on the days he is absent. While we have textbooks for three of his classes, we still do not have a viable way for him to access his literature textbook to this date. Also, the usual procedure seems to be to hand _____ the missing work the next day he is in school and say he has to catch up. Even after I offered to come at the end of the day and pick up any missed assignments to avoid this. There have been attempts to use technology (email, fax machine) in order to stay in touch with teachers. This has failed to resolve the problem and has not resulted in successful communication with all his teachers regarding missed assignments, outlines of class work covered or upcoming projects.

Much has been made about ____ remaining in school for the social interaction. On many fronts, this argument has failed.
Since 6th grade, when ____'s rare disorder became diagnosed, we have requested and waited for a time when we could address teachers, staff and students about it. We wanted to dispel rumor, innuendo and insult. We have not been able to secure a time to this date. Consequently, _____ remains the target of insults and unbelief about his condition. This has caused a great deal of emotional hurt to _____. Daily, he must ignore several boys who taunt him in his wheelchair. He must remind teachers openly to request a student push him from class to class, thus having to restate his needs and inabilities. If none can be secured, he “grandfather rolls” himself to his next class.

This week after sustaining a contusion to his ankle, this became quite hazardous to have him using his feet to help propel him along in his wheelchair. Thankfully, Nurse ____ alerted me to the problem (he also did not have a shoe on the injured foot), but this did not change the fact that he had to get from class to class without regular assistance.

Also, regarding the social aspect of school, ____ has not received any information that is given during early morning announcements, so he is completely unaware of any aspect of student life, unless he hears it from his friends or grabs a teacher in passing in the hallway. This situation has had recent devastating emotional results in regards to his social interaction.

_____ Middle School held a 7th grade president race, into which _____ was nominated by 10 classmates. At a conference meeting, the vice principal expressed concern about ____attempting to run for the office. She stated that ____ may not be able to attend meetings for that position as they were held in the morning. I offered to bring him for those meetings once a time was established. Not only did I not receive any such information, _____ was excluded from the speech session with his peers and the voting process altogether. This resulted in ____ feeling that he “did not exist.” Quite upset, we now wonder what is the point of continuing this charade. We were not notified of picture day. On the makeup day, we received no notice as well, only once we arrived at the building for his regular abbreviated schedule, were we rushed to “catch” the photographer before they left.

At this point, the return on using these parameters for ____ education is diminishing. The additional fluids that must be supplied to the school, the lack of interaction with his peers in announced social activities, the lack of meaningful class work continuity on his days out, the added technology (electric wheelchair, reminder tools) that must be used (some of which are supplied at our expense) brings us to the decision that all of this can be avoided by his return and future enrollment in the Home and Hospital Program.

Monday, November 17, 2008

Bringing My Son Home

I don't know about other parents out there. I have heard the real horror stories about trying to get a good education for children with learning disabilities, ADHD, autism, etc. In public school, it more often than not, is a fight to get proper accommodations and placement. Children with medical issues go through some of the same thing, especially, if there disorder or disease can affect them neurologically.

Well, we are not a horror story, but my youngest son is not making it. School increasingly becomes a place where he is not succeeding. Dysautonomia, chronic fatigue, pains in his joints and muscles, gastro pain and cramps, etc., etc. makes it a battleground at best.

I never wanted him to go to the brick and mortar school in the first place and now, getting him back into Home and Hospital has become nothing short of a fight. He hates being there. I hate him being there. It is almost palatable. But, he wanted to try and now he almost wishes he didn't.

Anyway, long story short, since he was already part of a 504 plan, in order to go into Home and Hospital, we had to have a SST meeting. That basically means, people you don't know, who don't know you well, "help" you decide what you should do. Even though you have already made up your mind and have the medical forms already filled out.

To give them the benefit, they are trying to make sure you know what ramifications your decision has. Since we live in "take one day at a time" mode right now, it is a moot point. I do not know what my son will do later in life. I don't know if he can make it in a magnet program. We don't even know why or how he gets sick, for goodness sake!

I stuck to my guns and tried not to lose my temper (which has been getting easier to do as I get older) while everyone stares at you. Then they tell me that every 60 days, I have to do the same thing over and over again. Thank you! I just want to see you every 2 months.

No bother. I figure I can bring videos of other dys/POTS sufferers. I can get audio tapes of other children and how they feel about school and how it doesn't work for them. Perhaps, we can watch a movie. Either way, he is staying in the program. If he has to do this through high school, he will.

Tomorrow, I will post the letter I wrote that put that final nail in the coffin for me. Life has to move on and so does my son's education.

See you tomorrow.


Thursday, November 13, 2008

It is What It Is

Have you ever had to put something in writing and once you did, it became real? Let me explain.

Sometimes, I can think about many things and they remain airy, little bubbles of thought. They could be dreams, real or pipe, fantasies, vents, frustrations, etc. They could be the budget I want to live by or the to-do list I made up this morning. But as long as I don't put them down on paper, it seems to not be real to me. Maybe real, but not permanent. I get to say it was a just thought or a passing piece of whimsy.

Maybe that is why I have been very hesitant to write just anything in my blog. I know journaling is to get your thoughts on paper. But we all know that if we found our childhood diary, how those thoughts no longer even look like our minds today. We would laugh and think that we were quite crazy to be so upset at our parents, or so loony over that boy. Maybe, we don't even see that to-die-for best friend from that time anymore.

Well, today, I am going to put down some things in my life that are fact and are pemanent. They are what gives this blog post its title. Bear with me.

1. I am going blind. Very slowly, but definitely perceptibly. Every year means more loss of sight. I pray I will get a provisional driving license next year. But after those four years, I will not drive anymore. I will be 48 then.

2. I am having more trouble hearing. I have dealt with this my whole life. I did not even put it in my profile until today. I will one day be very hard of hearing or deaf.

3. I am weaker and frailer every day. Joints, muscles and energy don't even support cleaning the house in less than two days. And that is with my children helping me. Chemical sensitivities fill my lungs with mucus and cause headaches and dizzyness. I am now struggling to be a homemaker.

4. I have two children who will be collecting social security benefits. Today I came to terms that I will be filing simultaneously for both of them this summer.

5. My husband is a very damaged person. He has too many fears and anxieties, too little self-confidence and self-reliance. I must become the leader in almost all things for the future of our family. He is not even capable of being a partner. I see that I will have to take care of him.

6. I will probably struggle with money for the rest of my life. The medical needs of the members of my family will be extensive. There will be nothing left after we are through except a special needs trust set up for both my boys. What will be in it, beyond the life insurance, I couldn't tell you.

And finally, from today, I no longer measure success in career ladders, climbed, avoided or left behind; consumer goods stacked in or out of storage units (including flat screen TVs); houses with echoes; extensive investment portfolios; spotless counters and floors; new car smell or old lace and silverware. No more life measurements through clothing, collateral, perfectly manicured lawns and flower beds, or any other superficial earth-bound thing.

From today, I count success in smiles through pain and weakness; dinners eaten together without a fight or anxiety; uninterrupted sleep; the taste of a good, filling meal; laughter, loud and raw; moments of mental clarity and physical strength; sights of strong color; sounds of harmonious music; the knock on the door from friends. These and all other eternal things will be my holy grails, my mantras, and my sustaining life goals.

It is truly what it is and what it will be.

Friday, November 7, 2008


Will I be the only one who will be anti-climatic during this heady period of jubilation? Will I be the only one not floating on cloud 900 with all the other Dems and hysterically, happy people? Will I forego dancing like a lot of grasshoppers?


Why am I not celebrating with smiles from ear to ear and a happy jig in my feet?

Because the truth of the matter is, this next presidency is going to be very difficult. No other president will be scrutinized as much. Anything he doesn't do correctly will be over-analyzed and pointed toward his defects. Anything he does well will be chalked up to the savvy advisers he is surrounding himself with.

And, realistically, the powers that be (or will become) don't fix an economy overnight (or break it, either). A generation has to pass to remake a war-torn country. A million years ago (roughly eight), we had a surplus of government cash. Here in Maryland, you saw expansion like never before. The schools, downtown. In fact, they created a bunch of "downtowns." The investors were everywhere holding seminars on how to get rich in real estate. Every block seem to have a gutted house with a "for sale" sign in front of it.

Now, even the car industry is looking to the government for a handout. I thought welfare got reformed at the same time the deficit disappeared. Suddenly, everyone has a hand out. I guess they can dig out that sign that kept track of the national debt again. Where did they put that thing?

I am sane enough to know that politics is a sticky business and shaping a country happens over terms, not a term. Changing an economy takes years, not months. There is no magic wand on inauguration day.

I am not looking forward to the taxes. Where else will this country get the money? I am not looking forward to leaving terrorist country unwatched. And, how else will we get our guys and gals home?

Suddenly, gun lovers are buying up guns by the stacks because they feel Dems will change the laws on them and automatic weapons, like the one that killed a little boy here in Maryland recently won't be around to show off to the kids.

And unbeknownst to Palin, Russia is doing a lot outside her back door.

So, there is reason to get your head out of the clouds, forget about the video on Oprah and get back to business.

For us, that means, back to doctors who don't know their jobs (replaced one this week). It is back to stretching SSDI and a retail paycheck to take care of a family of four. It is back to school work for me (week 3 of new classes) and it is back to home tutoring my son, who is still too unstable for regular school.

I put the extra leaves in my table today. Now, it will fit 8-10 people for Thanksgiving. And, the new catalogues came for Christmas. The turkey will be smaller this year. The gift lists smaller, too.

Go ahead and dance if you want to. But, winter is coming and this ant is getting prepared.

Sunday, November 2, 2008

Ended up in the Hospital

Well, here I go again. Having to write about a scary episode that no one has any clue why it happens.

I passed out yesterday. Nearly landed in the ole' cereal bowl. If it weren't for my sister grabbing my arm, and trying to shake me awake, I don't know where I would have ended up. I just remember having a fantastic dream with great band music playing. For my sister, my eyes rolled back into my head, I shook and collapsed into a heap.

This being the third time I have passed out this year, I decided to go off to the emergency room, a place I avoid like the plague.

You see, when you are chronically ill, the LAST place you want to be is the ER. They don't have time to deal with complicated cases. You don't fit a nice mold and you have something other than diabetes, high blood pressure, rhumatoid arthritis or some kind of cardiovascular problem. Once you don't fit a nice, neat mold, you are a pain in can fill in the rest.

So here I arrived by ambulance, reeling; out of it; vomiting. Sorry for being graphic, but it was not pretty at all. I could barely stay on the gurney, the room rocked and reeled so much. The lights bothered my eyes. They gave me a bowl to continue to retch into and hooked me up. I am so familiar with all of the procedures but I do not let on. I don't want to be seen as a career ER-body. You know, those hypochondriac people who have NOTHING better to do than lie on a hard roll-a-bed for four hours. I would love to meet one of those people. I never have so far. Most people I meet HATE the ER and can't wait to get out of there.

I'm sorry. Back to me getting ill yesterday. I won't drag you through four hours of blood work, urine samples and questions. Bottom line, the wonderful doctor believes I have Labrynthitis, an inflammation of my inner ear. Sounds plausible. Especially since I have passed out twice before this year. All after having three extractions of wisdom teeth that caused TMJ to reappear, vertigo that almost couldn't be controlled by meds and TN-trigeminal neuralgia, a new one for me.

Oh, BTW, how do I describe TN? Well, like electricity going through your cheek and out your ear. All that because you sat next to an open car window while the car was moving. Or sat in a room with the ceiling fan on low.

At this point, I tell the doc, thanks and now what am I to do? Follow up with your doctor (primary, that is) and see a specialist (ENT, that is).


More doctors. More people to poke and prod me and say "All your tests are normal."

I suppose I shouldn't be so blase or cynical. But, I have been tested for Lyme, Lupus, Rhumatoid Arthritis (RA), Multiple Sclerosis (MS), zoster, syphillis (seems to be standard practice) and a myriad other things, and except for a slightly elevated zoster result (that everyone ignores), I am perfectly healthy.

It was almost a blessing to finally have hypertension. At least something showed up abnormal. And yet, the tingling down my arm continues, the pressure in my ear is relentless, my jaw clicks and rocks better than a rocking chair, pain radiates from my mid-back and EVERY time I try to live and work like a normal human being, I pass out or get so fatigued, I need 3 days in bed.

Somewhere out there, a doctor has been studying exactly what is wrong with me. I hope to meet him/her one day. For now, I take my new meds and "get some rest." And try again, to "take it easy."

Thursday, October 30, 2008

A New Direction

I am in school.

Yes, I have enrolled in college...again. Now that I have started again, I can talk about the many attempts at going to school. I can talk about how I wished, dreamed and cried over this. How it shaped my life.

You see, I always loved to learn. Whether it was for a class or not, whether it was required or not. I loved to read and collect the books I read (see my library at: There was nothing I wouldn't try to learn and when the internet took off, I was there, realizing how much I could learn right in the comfort of my own home.

I started out at the top of my high school class (number 12 out of 604 students-top 2%). Everyone had very high hopes for my future. Everyone, but me. Little did everyone know the struggle I had just to finish my senior year. The migraines that would plague me through my college and work life were just beginning. My back already had a life of its own, slowing me down and making physical activity so painful. Maybe everyone should have known, since I took a semester off after graduation. Six months of doing absolutely nothing. Not even work. But when January 1984 rolled around, I thought I was ready. I had rested and was shouting, “Look out college life, here I come!”

Not even two months in and I contracted an eye infection. The doctor at the infirmary said it looked like someone used both my eyes for pincushions. What he couldn’t explain was the fatigue and weakness. I had friends lead me around campus at night because of light sensitivity, feeling the wind against my swollen, burning eyes, wondering if I was going blind. Six weeks later, still wearing sunglasses, I could see, but would suffer with sun-induced migraines for many years after. I only stayed another semester and gave up. I couldn’t do the reading, either for the psychology major or the literature minor. And suddenly, there was a new problem. I couldn’t remember anything. Not from my notes or anyone else’s. My near photographic memory was shot. I would suffer with this until this day, using Post-in Notes, lists and electronic memory devices to fill in all the missing gaps.

Dejected, I came home and tried again, this time while I was working. Perhaps I wasn’t cut out for university life. I tried a community college. Here I did a little better. But into my next to last semester, I gave up again. Fatigue, migraines and the constant back pain was overwhelming. I tried to live on Tylenol and couldn’t.

Over the next few years, I would try again, and again…three times, three more schools. Three abysmal failures. Finally, I gave up for good. I drew the curtains closed on a dream, and put it away. Maybe, I was meant to be a drone; work my fifty years in a cubicle and retire with the gold watch (or whatever it was they gave women). I went out into the workforce and started to climb the ladder.

And what a ladder! I started as a walking messenger, making $3.80 an hour. Sixteen years later, I would command a convention coordinator’s position while covering administration for a CEO/Founder and a Director of Business Development. I loved it. I was respected and admired for my drive, my calm demeanor when everyone else ran around like chickens. I asked for a $5000 raise and got it. No one wanted to see me leave. Except the woman across the street who ran her own business and offered me even more.

But again, I was living a nightmare. I could barely make it in five days a week. Because I was so capable, nothing suffered, but everyone knew. They chalked it up to being a single parent, raising two boys, one with autism, all on my own. What they didn’t know was the fatigue, the back pain and flu-like illnesses every weekend were taking its toll. I routinely ran out of steam by Thursday. Finally, I tried to come in one day to cover when I knew I couldn’t. My boss was shocked. I was bent over and slow. I had to think slow and deliberately before I spoke and though I could still do my work, it was demoralizing just to look at me.

That afternoon, the rest of the staff staged an "intervention," called a good friend of mine to pick me up and sent me home. I felt horrible. I took some time off and tried to go back. Nonetheless, August 2001 was the last time I worked full-time. I would never see accomplishment like that again. Though I would work part-time at various places and even try to run a small graphic design business out of my home, I became worse and worse to where I finally applied for disability in 2003 and won it in 2005.

What does all this have to do with school? Well, all that time, I thought, I couldn’t go to school again. How many times had I tried and failed? Why set myself up for failure again? I thought I would have no chance at learning something to change my future. And I still thought that way, until a month ago.

The reason is technology. The same technology that connects me to so many wonderful people here on the internet has given me the chance to finish my education. The chance to go when I can go. Learn when I can learn. Read when I can read, in enlarged letters to save my eyes. In chairs to support my back. I have the chance to do what I really want to do. Learn and succeed.

Has it been easy? No, a migraine kicked in the first day. But I have a computerized magnifying system now that keeps the eye strain and pain at bay. I don’t overdo it and the classes and readings are structured that I don’t have to overdo it to succeed. How about my memory? It is still fuzzy. But I can print out notes and post them around my school area. I have charts on my computer desktop that I can open at a moment’s notice. I have the ability to use audio and a CCTV in order to facilitate every aspect of my education. It has been heaven!

But am I a successful student, you may ask? After 20 years, are you even capable? Well, below is a copy of an email I received from my communications teacher. I didn’t put it here to brag. No. I cried when I read it. I cried for the lost years and the pain and the failure. I cried for the feelings of disappointment and the fear of not having a chance to truly succeed again. I cried because here I sit in a room, knowing different and believing again: I can learn. I can succeed. I have not failed.

Everyone, I am grateful. Grateful to a system that allows me to try again. Grateful to a university that is set up for a person just like me. Grateful to God. That wonderful God, who gives second, third, fourth, fifth…and sixth chances. I have learned to really understand that.

So, here I go again. Pray for me as I do for you.



My teacher’s email:

You are Excellent!
Posted: Thu 09/18/2008 01:19 PM,
by: MM

Hi, Judi!

I read you[sic] response to my post on Persuasion vs. Decision and I couldn't help but feel the strength and energy from such an excellent learner as you--

As your classmates have commented, your energy, passion and excellent insights as well as ability to express your ideas are inspiring. This class is so lucky to have you. Despite of what you know what you can do, you remained humble with no air of arrogance on your part. You have also been very supportive of your classmates. You see? I told you that you have great leadership skills... I pray that you will be blessed with more energy and light.. Keep shining, Judi! Keep spreading the light and the energy.

I will miss you and I will remember you ever... I hope that we can continue to keep in touch even when you are no longer my student.

Been a Bit of a While...

...since i posted something. I feel guilty. Almost nine days and no postings! Not that things haven't been happening here but just no time to put them down.

Let see, nearly left the husband again. Seriously. He is a mess and I love him and all, but I am beginning to think marriage is greatly overrated. Since I have these miserable things called morals, I will probably just put up with him and not bury him in the backyard. Though everyday, I understand that show "Snapped" more and more.

Actually that show is really off the wall! But this was about catching up.

Okay, hubby's mom is out of the hospital. Oh I don't think I wrote that. Must have left it on Twitter. She had a triple bypass and survived. She is a feisty, strong little Italian who would remind you of Estelle Getty (RIP). She had to go back in for blood clots on the lungs, but is home resting now. Some serious prayer sent up for her. I don't know what my hubby would do if his mom passed.

I am pulling young son out of regular school and putting him in the Home and Hospital program. The reasons for this would take up a post by itself and I will write it when I calm down. Right now, I would probably break all decency rules and have the blog shut down and that is not my purpose. Blogging should be cathartic, not catastrophic. I'm trying. Trust me. Real hard.

Also, got my final grades from school. Another thing that can take up a whole post. Plus there is a post that was written before final grades that has to be posted first.

So, it looks like I am going to be posting more tonight. I will try to get to everything.

TC and GB,

Judi - the "real" pitbull" soccer Mom

Tuesday, October 21, 2008

Cicadian Clock and Memory

If I sound like a broken record on this, please forgive me. Since it affects my family so deeply, it is kind of a broken record in my house.

At this point, only myself and my oldest son with autism have a half-way decent memory. My sister, husband and young son...oh, just forget it.

All three seem to have sleep issues and the memory, especially short-term is just terrible. I don't even laugh about it anymore.

I just take the peanut butter out of the freezer, pick up the garbage bag from the middle of the floor where someone left it, retrieve my sister bank card from the back of my van and keep going.

This article is an animal study, but it hits home with us. Another link in the chain of loss thoughts and disrupted sleep. Enjoy.

Circadian Clock Could Help Learning Retention

Your circadian biological clock, which regulates the timing of periods of sleepiness and wakefulness throughout the day, may actually be helping you remember what you learn, according to a study in the Proceedings of the National Academy of Sciences.

Researchers at Stanford University's Department of Biology compared tasks between two groups of Siberian hamsters — one with their circadian rhythms removed by non-invasive means and the other a control group. In a delayed object recognition task, arrhythmic animals couldn't distinguish a new object from a familiar one only 20 minutes or an hour after training.

The researchers concluded that internal circadian clocks contribute to memory function in a way that is independent of sleep. "In aging humans, one of the big things that happens is the circadian system starts to degrade and break down," biologist Norman F. Ruby, who contributed to the study, said in a press release. "When you get older, of course, a lot of things break down, but if the circadian system is a player in memory function, it might be that the degradation of circadian rhythms in elderly people may contribute to their short-term memory problems."

Original article at:

Behavior Modification

This post was actually a reply to a discussion about ADHD and autism. They wanted to know what we had done that gave us success over the disorder.

Having a 16-year old who has overcome so many obstacles in this life, I gave some background on how I raised my son. It was not easy, by any means. And, I had very little help, except for the internet, which back in 1992-1996, was not the big, beautiful web we have today. Most of what I did is trial and error and whatever worked. Here is my response and take on behavior modification.

Hello, All,I will try to remember what I did because he is now 16 and it is hard to think back so many years.

When he was a baby, we swaddled. Without it, he would hit the walls of the bassinet every other minute and no one got any sleep. Actually, the first six weeks, he slept in a stroller, swaddled in the basement. Now, before you call me cruel, it was the only place with no light and no noise. We used a baby monitor to know when he "really" woke up.

I learned very early on that he needed a routine or we would have a basketcase on our hands. I went back to work early and had a babysitter. Thing was, I walked in with a schedule of two pages! Everything was listed down there from when he would eat to when he probably made a bowel movement. She thought I was crazy, but after two days, she was amazed that everything I wrote down, complete with times, was accurate. If you followed the schedule, he would be fine. If not, screeching baby at ten o'clock.

His food has to be a certain temperature. The bottle nipples had to be a certain size. Too big and he would choke, too small and you got screeches. He couldn't figure out breast feeding, so I didn't. Of course, he had favorite foods and that was it.Life took on a very ordered tone. He has more autism/ADD than ADHD. Not very hyper, though he rocked and flapped regularly. He hated loud noises, crowds (no birthday parties or movie theaters to this day), bright lights and certain materials.

I am saying all of that to say this. The more I kept to a schedule, the calmer he was and then we could do some work together. Change had to be brought in very slowly. Everything had to be introduced. Foods, people, places, school, toys, holidays, etc. For example, a new person was never just brought into the room. He had to hear their voice somewhere in the house and we would wait to see if he would get curious. Most times, not. When he was around 5, it took him a year to speak directly to my best friend who was over almost every day.

As for language, he started talking around 12 months and then stopped. He didn't use regular language again until school. He made up his own language and used sounds. I didn't care what it was, it was communication and we responded. We called it Andrewisms. He still does it to this day, creating language. An old one was Fuf-fuf, it meant cartoons. We figured out later that I kept calling silly cartoons "fluff" and he made up the word to use when he wanted to watch them. Today, we have "linner." It means the meal between lunch and dinner, like brunch is the meal between breakfast and lunch. Whatever it is, we use it.

I am sorry this is long, but I feel very strongly about this. We hardly had any help. I once had a director of an autism center ask me how we taught my son humor. I told her, we laugh a lot and love comics, cartoons and jokes. If he didn't get it, we explained it. We even taught him what laughter sounded like. After many years (like around 10 years) he finally understood. The first time he laughed out loud, I cried. Most of his childhood, he hardly even smiled. Now, all his teachers remark about his cynical, sardonic wit. It is not a "monkey," but his own take on what we taught. EVERYTHING he does today, came that way. As he got better, I built in change and flexibility. Now, at 16, he can accept change on a dime; something almost miraculous in the world of autism.

I don't want anyone to get the idea it was easy. Many times homework was finally finished at 10pm. Or just not finished. He didn't get an aide in school until 5th grade and they promptly took it away in high school. He has the smallest amount of accomodations and hardly any speech and language help. He hardly ever get an A in a class, but his Cs are golden to me. We hardly ever went anywhere, including church. I didn't see the inside of a movie theater for nearly 12 years. And, he was not with me.

I am thoroughly with McDannells on this. We have to teach these kids to be confident in themselves and that they will find a place in this world. Excuses don't matter to the world at all.

Other than that, I give this piece of advice. Do what works. If you have to empty the cupboards and teach fractions using bells, whistles, every measuring cup and spoon, and food coloring (my personal favorite!), do it.

And don't make a monkey out of anyone. I would rather my son be eclectic and innovative than a drugged zombie working in a factory somewhere.

Monday, October 20, 2008

A Year in a Nutshell

I thought I wanted to slowly go through this last year, but I find that my mind REALLY doesn't want to remember it.

Between the ignorant and cold doctors, the many fruitless visits to emergency rooms, the insomnia that ensued because I was just so afraid to leave him alone, it is too difficult to look back and write it all down. Probably, I will make mention of an old event here and there as I write further, but to drag it all out and relive it, is so painful. Let's just do the abridged version.

My son went from a rambunctious, devil-make-care child to a cautious, shy, anxious little giant. I say giant, because he stands now at 5'8", 199 lbs and is just 12. He is considered obese now, but was always larger than his peers. The obesity has set in because he is now exercise intolerant, and cannot stand more than an hour of any movement without paying for it later. We have so many things here for him to use for exercise, but causing him to use up all his energy stores in 20-30 minutes of exercise means you have a sick child for the rest of the night and possibly the next day. Needless to say, we don't do that.

I do want to mention all the doctors we went through. Four neurologists, two cardiologists, two pediatricians (our last one has just gone AWOL on us, not returning phone calls or faxes since March 5th). I could write a whole blogpost on doctors, but I have learned to tone down the heat. At one point, I hated them all. But I realize that doctors are human and why did I think all the beautiful, compassionate humans went into the medical field? There are good ones and bad ones. We saw our share of both. For now, our medical team consists of a developmental pediatrician (who first correctly diagnosed him), an ENT who's office staff is fabulous (for the sleep apnea), one GI doctor (for gastro issues) and what has to be the best therapist in the world, who from the beginning, never doubted us when we said this was not a psychological issue.

We see the psychiatrist today. My son has a great deal of anxiety about becoming a chronically ill person. I am hoping to be able to help him navigate through these tender years and still retain some confidence and self-reliance. I am hoping the psych will come on board, but he started out combative. I pushed right back. It is amazing how someone who never met you before attempts to tell you all about yourself after only 10 minutes of dialogue. I am going prepared with printouts of my son's disorder and see what happens.

The end result of the year was that my son never made it to middle school. Not really. He only made four days his first two weeks and had to be brought home. He is attempting to return part-time now, but since August 2007, he has been homeschooled (by tired ole me!) and then tutored by a teacher through our County. Both attempts have produced very little by way of educational advancement. I was too close to the situation (I swung between being overly cautious and Mommie Dearest) and the tutor needed to return to the sixties. LOL! We both did a banged-up job of trying to get information into a brain now permanently changed by OSA and Dysautonomia. I can see the humor in the situation now, but at the time, it was far from funny.

Imagine trying to get a brain deprived of oxygen day and night, sedated on seizure meds (he was misdiagnosed with seizure disorder of the temporal lobe in the beginning) to remember the ancient map of Greece and Sparta, the agricultureal pursuits of ancient Mayans, and why a penny turned green when exposed to vinegar! It was a hoot! Everyday was an adventure. Who needed the Army to be challenged? I am actually happy that we are attempting to return him to school. Yes, I still nailbite, but at least I am not trying to explain exponents and least common factors anymore! How I do appreciate teachers after being through all this!

There is an old song that says, "What a difference a day makes." My line is "what a difference a year makes." We have thoroughly changed within this year. No more taking life for granted or sitting back and waiting for things to happen. Even though I have been disabled since 2003, I still operated in my old life. I had 1-,3-,5- year plans. I was a methodical, pace yourself kind of person. I had been on the internet for 20 years and didn't embrace half of it.

Now that is all changed. I am writing again (this crazy blog calls to me!), I am taking pictures again (school major was photography), and I am about to buy a vidcam. Why? Because I don't want my son to miss a single opportunity to enjoy what he has left.

One quick story from this year might explain it. After taking my son to a neuropsych evaluation last year, the evaluator came to me, saddened and obviously concerned. She questioned me over and over about my son's habits and routines. Then she began to give the bad news. My son's memory was shot. He literally did not have much left of his short-term memory and his long-term memory would be sketchy. She likened his brain to a polaroid camera that took shot after shot, but then threw the pictures away as the next one came out. The analogy was stark and very cold.

At first I was devastated. How can anyone learn if they can't remember? Even visual or audio cues did not bring recognition. The therapist began to compare him to Alzheimer's and traumatic brain injury patients. Then I decided to do something. After raising an autistic child, I knew that repetition does help. I decided to fill all the moments. Continually fill them with memories, conversation, laughter and sensations. Pictures are left out of albums and placed in huge frames to be seen at a glance. Music is played over and over again (I actually like that sometimes). Certain sayings are repeated especially if it was funny. I bought him an audio recorder to record his thoughts, jokes, anything he wants to hear again and again. And when the vidcam comes, we will make gigabytes of memories to be replayed as often as he likes.

If his brain throws the memories away, I will be there to pick them up.

And keep them safe.

Sunday, October 19, 2008

Sleep Apnea and Diabetes Link - Important!

I try to stay objective when I put articles in here. I realize and hope others know that you must look at your individual situation and always consult your doctor. But, in this case, this article is like looking at my sister and it is hard to maintain objectivity.

My sis, at 33, has been obese most of her life. She also has had sleep issues since she was a child. When she has the series of small strokes several months ago, it was a major shock to all of us. But when the diagnosis of diabetes came back, it mirrored our own mother.

What NEVER was discussed was the possibility that diabetes and sleep apnea were related. In our personal family history, I believe it is so. Both my mother and my sister snored terribly. I grew up with hearing the pauses in the breathing. I was so accustomed to them, that I didn't even think anything of it when my own son did so in his crib.

To fastforward so many years, it is difficult to possibly believe that maybe my mother needed a CPAP machine. She died very young at 62, after suffering with end-stage renal failure for nearly 10 years, the final complication in her nearly 30 year battle with diabetes. A battle she never seemed to be winning, only slowly and painfully losing.

My sister has been diagnosed with moderate-to-severe sleep apnea and my son has moderate sleep apnea. Both struggle with obesity and for now, my son's sugar levels are good, though his autonomic nervous system is shot.

My sister recently did a test of her sugar before she went to bed (a reading of 97) and when she awakened (a higher and not good reading of 130). With no food in between, her sugar level could only be a hormonal response to lack of oxygen.

Sorry this intro is long, but I am adamant about this.

Sleep apnea is a poorly controlled problem that is contributing to one of our society's biggest health crises: diabetes. It is destroying lives and ruining childhoods. Please do not take it lightly at all if you do not sleep well. Whether it is sleep apnea or some other sleep disorder, PLEASE seek help from a qualified sleep professional, preferably one from a sleep center in a hospital.


Sleep apnea and diabetes could be linked

By Barbara Quinn
The Monterey County Herald
Page 18 2008-10-19 01:04 AM
Associated Press

We hadn't done this before. Two of us - one from our hospital's sleep center and the other from our diabetes program - were both listening intently to a teleconference on sleep apnea and diabetes. What does one have to do with the other? Perhaps plenty, according to research in both fields.

Obstructive sleep apnea, or OSA, is characterized by disruptions in sleep caused by disordered breathing, explained sleep medicine physician Dr. Angela Hospenthal from the University of Texas Science Center. Symptoms include: "heroic snoring" (the kind that can be heard through closed doors), waking up choking or gasping or with a dry mouth or sore throat, and being excessively tired during the day.

How do you know you have it? Spend the night in a sleep lab hooked up to electrodes to measure how you breathe (or not). Lots of physiological things happen while sleep disordered people snore, said Hospenthal. Oxygen and blood flow are reduced, blood pressures rises and heart irregularities occur. All in all, it's not a very restful sleep. And during waking hours, people with sleep apnea have more trouble concentrating and remembering things. My sleep center companion nodded knowingly.

And what does that have to do with diabetes? Sleep apnea and diabetes are "linked" in several ways, we were told:

Central obesity - excess weight around the middle - is a risk for diabetes as well as sleep apnea. "Fat cells in the upper body (apple shapes) have different health effects than fat cells in the hips and thighs," Hospenthal noted.

Insulin resistance syndrome - a condition common in people with diabetes - is also commonly found in people with OSA. When we don't breathe deeply enough, it increases hormones in the body that raise blood sugar levels and impair the body's ability to process excess blood sugar. We both took a deep breath.

Neuropathy - nerve damage common in people with diabetes - is also prevalent in people with obstructive sleep apnea, although we don't exactly know why.

So, sleep apnea may lead to diabetes and diabetes may lead to sleep apnea. And interestingly, the treatment of one condition may improve the outcome of the other. For example, one effective treatment for sleep apnea - Continuous Positive Airway Pressure, or CPAP - may also help control blood sugar levels by helping get more oxygen to the body.
These strategies may help prevent or treat sleep problems and/or diabetes:

Lose excess weight. Even a modest weight loss of 10 percent to 15 percent can decrease the risk for sleep disorders as well as diabetes.

Avoid sleeping on your back. It blocks air flow which aggravates sleep disorders and may disrupt the body?s ability to process blood sugar.

Go to bed! Sleep deprivation is bad for your heart, your mind, your blood pressure and your blood sugars. Most adults require 6 hours to 7 hours of sleep a night.

Avoid alcohol, narcotics or other medications at bedtime that may disrupt your sleep.

My teleconference companion and I exchanged phone numbers and promised to keep in touch.

Original Site location:

Saturday, October 18, 2008

Looking Back...

April 2007. That was the month. The month that everything changed. And yet, it was the month that everything began to come together.

You know how you have a question in the back of your mind, nagging at you and never getting answered? That's what it was like for me.

My son had been born in 1996. Of course, like all mothers, I thought he was gorgeous. What was strange was that everywhere I went, so did other people. Women tripped across the street to gaze at him. At the babysitters, other mothers brushed past me AND their own kids, to say hello to him. Obviously, he had something. He had a superman curl, dimples and a cleft. OMG! I figured he was going to be a rake, and what was I going to do with him?

He was athletic too. He was the kind of child who didn't stop until he learned a thing. Learning to ride his two-wheeler didn't stop until nightfall. By then, he could speed up, stop on a dime, and turn in complete circles. Rollerblading met the same kind of determination. When he turned six, we began baseball. Too borring. The following year, soccer. Now, that was the sport! He could run all day, zigzagging up and down a field. I think he was in heaven! The following year, we added junior firefighters. He had wanted to be one since he was four, and now at eight, he meant to keep that promise.

So off we went to competitions with other fire houses and participated in parades, representing our neighborhood. I felt very proud. Because my first son had autism, I felt so blessed and redeemed to have my young son. Here was the child who was going to do things, and go places. He was outgoing and made more friends than I could keep up with. Everyone knew him, young and old. But more importantly, everyone liked him. He was generally considered a good kid.

And yet, there were questions. In hindsight, we put puzzle pieces together and say, hmmm...

He never could sleep well. After his first year of life, sleep became something of a battle. Either he needed to be near you or swaddled. He could not get himself to sleep. And you couldn't trick him, either, that smartypants! He could tell you were going to lay him down. If you thought he was in a deep sleep, those eyes would pop back open and stare at you. By two or three, there were no more naps during the day at all. And the energy was already off the chart.

At first, we thought, well he is just all boy. But, he snored. Like an old man with loose dentures. Everyone thought it was cure and told me, "how can you worry about a boy, so handsome, energetic and bright?" He was off the growth charts and never got sick.

But something else began to happen. He began to throw tantrums. He became easily frustrated. The problems in school began with being kicked out of pre-school. My darling little superboy had kicked a kid in the head and proceeded to destroy a room. I was appalled.

The tantrums continued. When he got to kindergarten, I stopped working full-time for good. My own disabilitiies were making it difficult anyway, and I needed to be there when the phone rang. And rang it did. By first grade, he was not concentrating anymore. He couldn't keep his attention on what was being taught. He was daydreaming all the time. By second grade, his grades began to slip. He couldn't keep a morning routine, even if you tatooed it on his arm. Even at home, I began to notice the bad memory. The joke was that if the dog depended on him for food, it would starve. All this with an energy drive that drove his brother and I crazy!

And yet, the sports began to suffer. It seemed like he couldn't sustain the energy needed for the field. He was constantly being pulled out of the game. He was not making plays like he had in the beginning. He was missing perfectly good shots and becoming clumsy with his moves. In fact, we noticed it at home. He was always falling, scraping and hurting himself. At firefighter meetings, he began to fall asleep. And memorizing the rules and procedures left him completely confused.

Then third grade began. Here, the social worker was brought in. He was becoming a "problem child." Disruptive and seemingly noncaring, he began to exhibit signs of depression. The social worker wanted to put him in a peer group she had started, but she began to notice something. My son would disappear. While sitting there, he would just stop moving and be gone. Then he might shake himself and he would be back. She suspected seizures.

Thus began the doctors. I still have her note to me requesting his first EEG. When the results were normal, everyone changed their minds and began to say he had ADHD. It covered some things, but not all. I fought it from day one.

Years ealier, my first son had been misdiagnosed with ADHD. I suspected more was going on with my second son, especially with the poor memory. It was not that he wasn't concentrating or paying attention. He literally could NOT remember. No one paid me any mind at all.

Try the meds they said. No difference, except he now had insomnia. And the depression worsened. He began to know something was wrong, but he couldn't tell me what it was. And I couldn't tell him what it was either. I began to feel we were losing him. He became fearful and apprehensive.

We tried therapy and finally natural remedies. There, we began to see a small improvement, especially in his schoolwork, though his memory was inconsistent. Fourth grade was the best year he ever had in school. On the herbals, he made honor roll three times that year. He made student of the month twice and I though, okay, I can deal with this. He just needs some supplements.

He was still clumsy though. That year we saw a sprained right ankle, a fractured inside and outside left ankle, and a bone chip from his left foot. With all the sitting around after those accidents, he began to gain weight and he left that school year in a boot cast.

But we were sure he was coming back. His grades were wonderful. The school staff thought he was just the greatest. He volunteered to teach kindergarteners about school and help them with their activities. Fifth grade started out on top of the world. Due to a move, he had to go to a different school, but I assured him he would still see a lot of his old friends, and since he was such a whip at making new ones, by the time he got to middle school, he would know twice as many people.

Well, as the saying goes, Didn't happen.

The problems came back with a vengeance. The calls began again. His temper; he is being rude to teachers. He is unreasonable, won't cooperate. Classwork is atrocious, and manners are even worse. As I cried inside, I headed up to the school. Here we go again. What is going on? I really can't take this. Where is my happy-go-lucky little man? What is robbing him of his innocence, making him someone I don't even know. What is happening to his memories? Why is his mood so miserable?

These are the questions that swirled in my mind when the month of April 2007 began. So, the day he asked to go out and play, it was a glimpse of a child that was disappearing. A boy whose happy childhood was about to enter the world of chronic illness.

Friday, October 17, 2008

Telling a Hard Story

After writing the last blog post, I started another one right away, and stopped.

It was too difficult to just jump right in and talk about how this last year has changed us. I realized that I was not that detached from the emotions this year stirred up. It was still difficult to talk about the changes, the loss and the bewildering confusion.

Then I realized that this blog was my way of coping. That every day that I attempted to write this stuff down was a day of recovery. Others might read it or might not, but once it was written down, for me, it would be a successful day. Another day after a bad one. I realized if I could put a whole lot of days like that behind me, we (my son and I) would turn around eventually and see how far we had come.

Grief is the human response to loss. Loss of any kind. The death of something can be just as painful as the death of someone. In having to let go of a former life, do we pause to grieve? Or do we do like our society tell us, "start a new business, get back into the scene, try a new hobby..." Even when someone suggests counseling, it is more about "moving on" than dealing with grief.

I found out that giving ourselves time to grieve what we have lost is so important. It validates our feelings and our situation. It lets us know that we are not just a blip on an evolutionary timeline. Something hurt and I am going to stop and acknowledge it! That doesn't make us weak or failures. We are not just complaining. To grieve is one of the most human things we can do...and should do.

Have you grieved the changes in your life? What helps you in your process? Can you look back on it or is it a daily thing? Has it taught you anything or brought out things in you that you never knew you had? I would love to hear about it.

Wednesday, October 15, 2008

Kids, Sleeping and Cognitive Functioning

Okay, I hadn't planned to put to articles about kids and sleep back to back, but this is an exception.

This article below outlines what I believe destroyed my son's life as we know it. I know that sounds dramatic, but we are trying to build a new life where the old one is going, going, gone. I don't get angry about it that much anymore, but I believe, if one doctor had asked me about snoring and sleep issues or paid attention when I DID say something, my son's life might be different right now. Notice I said, "might." No one knows, but with the information I have now, things could have been very, very different.

Please read and pass on to anyone you think needs to know this.

Cerebral oxygen saturation linked to cognitive function variation in children with sleep-disordered breathing.

By David Holmes

14 October 2008

Am J Respir Crit Care Med 2008; 178: 870-875

MedWire News:

Factors influencing regional cerebral oxygen saturation may interact to explain the sources of variability in cognitive function of children with sleep-disordered breathing, researchers report in the American Journal of Respiratory and Critical Care Medicine.

About two-thirds of children with snoring or obstructive sleep apnea (OSA) have some level of cognitive deficit. "However, the frequency of apnea events during sleep does not predict cognitive deficit and does not correlate with the degree of cognitive deficit,” Raouf Amin (Cincinnati Children's Hospital Medical Center, Ohio, USA) explained.

He continued: “Such a paradox raised the question of whether there are some variables that we do not traditionally measure in the sleep laboratory that might modify the effect of SDB on cognition."

To investigate further, Amin and team used infrared spectroscopy to measure the degree of cerebral oxygenation during sleep in 92 children aged 7 to 13 years, including 14 control children without sleep-disordered breathing, 32 with primary snoring, and 46 with OSA. The team also measured blood pressure and additional sleep diagnostic parameters.

They found that children with snoring had a significantly lower regional cerebral oxygen concentration than healthy children. However, paradoxically, they found that children with OSA − usually considered a more severe from of sleep-disordered breathing − had significantly higher regional cerebral oxygen concentrations than children with snoring only, and higher levels than controls.

"During normal sleep, when breathing appears to be stable, there seems to be higher oxygen in the brain among children with sleep apnea compared even to normal children," said Amin.

The finding may be attributable to the fact that sleep apnea raises blood pressure, according to Amin. "Children with sleep apnea have higher blood pressure compared with children who snore. This may explain why paradoxically we find higher oxygen levels in children with OSA."
David Gozal (University of Louisville, Kentucky, USA) wrote in an accompanying editorial that the findings showed that “neurocognitive deficits are not just in the brain matter but involve the cardiovascular system as well."

"By taking into account the role of blood pressure in regulating the amount of oxygen concentration in the brain, we might have a better understanding of the relationship between sleep-disordered breathing and cognitive deficit," concluded Amin.

Tuesday, October 14, 2008

Children and OSA

In between my posts about my family and our lives with chronic illnesses and disability, I will also post about sleep disorders and how they have affected us.

I love to find articles about sleep disorders and will post them here with links to the original article as well as other sources. Please feel free to comment or leave more information. I so want people to understand how much this can affect their lives or the lives of a loved-one.

Here is the first of many posts. Enjoy.


Though OSA has touched two members of my family, one older and one still a child, I think it is VERY important for parents to know what to look for in their children if/when they suspect sleep disorders.

Children can suffer from daytime sleepiness, but more likely, will have hyperactivity and restlessness. This could be misconstrued to be symptoms of ADHD. I do not have numbers, but my son was one of the many who was told he had and "tested positive" for ADHD, when he had sleep apnea. We even tried a trial of medication (only lasted two months) with no improvement. The side effects were many and more disruptive (insomnia, circadian clock rhythm dysfunction, loss of appetite and headaches) than the hyperactivity.

Below an article reprinted from The Herald News which goes into detail on this very subject. Again, a note of caution for parents. If your child suffers from hyperactivity, don't wait for the doctor to bring up whether your child sleeps well or not. If you have any questions regarding your child's sleep, bring them up to the doctor and don't shy away from this. Sleep apnea is nothing to play with when it comes to a child.

Sleep disorders linked to child hyperactivity

March 19, 2008
By Denise M. Baran-Unland
Special to the Herald news

Talk to a parent with a 2-year-old who is bouncing off the walls and she might apologetically tell you, "He's just overtired."

Flash forward to that same child five years later and that same parent might wonder if her child is hyperactive.

The fact is, he might still be overtired.

Between 1 and 3 percent of children ages 2 to 5 years old have obstructive sleep apnea, according to American Sleep Apnea Association. Left untreated, a child might experience failure to thrive, a number of cardiovascular disorders and symptoms commonly related to hyperactivity, including problems with learning, attention and behavior."

I have a number of patients with complaints of learning disorders," said Dr. Mohammed Saeed Homsi, pediatric sleep specialist at Provena Saint Joseph Medical Center in Joliet. "They think that their children have ADD until I dig deeper into their history."

If they tell me that their child snores, stops breathing or has mouth breathing, I do a sleep study. The parents are usually very surprised that sleep apnea is the cause of their child's hyperactivity and learning disability."

While being overweight may contribute to some cases of sleep apnea in children, as it very often does in adults, by far the most usual cause is enlarged tonsils and/or adenoids, Homsi said.

Yet, because sleep apnea is rarely diagnosed in children, the American Academy of Pediatrics now recommends that all children be regularly screened for snoring.

Sleep study

If the child has signs of obstructive sleep disorder, the pediatrician may order a sleep study or polysomnography. During the study at a hospital or sleep center, the child wears several recording devices --the same as an adult would -- none of which is painful; still parents are required to spend the night with the child, Homsi said.

The recording devices include an electroencephalogram (EEG), which measures brain waves; an electroculogram (EOG), which monitors the different stages of sleep; and electrocardiogram (EKG), which measure heart rate and rhythm. The child will also wear chest bands that sense breathing, monitors that record leg movements and monitors to sense oxygen and carbon dioxide levels in the blood.

If the sleep study reveals the child has obstructive sleep apnea, enlarged tonsils and adenoids -- if present -- will be removed. If obesity is the culprit, the child may need to lose weight.

In certain cases, the child may have to wear an electronic device when they sleep. This is called continuous positive airway pressure (CPAP).While all this may sound scary, the good news is that, with treatment, the symptoms and consequences of sleep apnea are reversible. But if symptoms persist, further exploration is needed.

Obstructive sleep disorder is not the only sleep disorder to plague children and teens, Homsi said.

For instance, the child may suffer from periodic limb movement. Similar to restless legs syndrome, the child periodically moves his legs while he sleeps. This causes him waken from sleep without being conscious of it, Homsi said. Unlike restless leg movement, which is diagnosed from the child's history, periodic limb movement is diagnosed by a sleep study."He will be very sleepy during the day and he will not be productive during school," Homsi said. "Sometimes iron deficiency causes it and sometimes we need to give medicine to control the leg movements. It depends on the result of the sleep study."

(Sorry, I do not have the exact citation link for this page. I will search and try to put these in as I go along.

Monday, October 13, 2008

A Year Ago

I cannot believe that it is over a year. One whole year since this saga seemed to begin. Though hindsight is 20/20, we were blind until April 2nd, 2007.

Up until that date, I was a mother of two, newly married to a wonderfully crazy kind of man, and slightly troubled on what to do about my sister.Though that day would change everything, right then and there, I wasn't thinking about too much. I had weathered becoming disabled, losing the ability to work. I had survived back surgery and once again could stand on my own two feet. I couldn't wear heels anymore, but, hey, we all can't walk the catwalk!

We had bought a house and moved in, trying to create a home. The two boys now had their own room where they had had to share for so long. We had enough room for an office and the master bedroom nearly blew my mind away! After living in what I affectionately called "two boxes on top of each other," I was happy to have a master bedroom at all!!

My sister had not come with us. In fact, she was going through shelters and transitional housing. But it looked like progress. After so much pain, disappointment and loss, I began to have a little hope that she would FINALLY be okay. They would help her get on her feet, and maybe, for the first time in 33 years, she would not live with my brother or me. There had only been one year she had been on her own, and that was over 10 years ago.

She never seemed to be able to get it together. All through high school (which she eventually dropped out of) and the brief stint of college, we all thought, maybe, just maybe, she would pull herself together. Maybe she would make something of herself. She had two jobs now, one she loved more than the other, but she was trying. That is all you can ask sometimes.

It looked like things were going to change for the better. I had finally accepted that I could no longer even sneak out to work. It had been hard to become disabled at 37. I had worked since I was 17, and hated it at first. But after the last round of sickness had caused Ramsey-Hunt Syndrome (a VERY BAD version of Bell's Palsy), I was finally humbled. I would stay my butt home and be a housewife. As my peers went on to better and better positions, I figured out how to cook organic and vegan. I just wanted to live...pain-, diabetes-, high blood pressure-, nerve flare- free.

I remember the day. I was in the kitchen. Of course, I was in the kitchen. I love cooking, recipes and food!! While other people dream of big screen TVs and surround sound, I dream of outlets every three feet, so I can plug in more gadgets! My dream kitchen would be 20' x16' with counters that went all the way around...

Anyway, back to the point. I sent my son out to play with his friends. He had sustained broken ankles, sprains and a chipped foot lately. Very clumsy, I thought. But the foot surgery seemed to have cleared everything up. But he had become chunky, and needed to move.

I told him to go get some air. The other boys were already out in the warming sun. Well, out he went to play football. I smiled because he was my athletic one. Soccer player, football, junior fire fighter. We had plans for him. Bigger than most boys 2-3 years older than him, everyone wanted him on their side.

I remember looking into a pot, then glancing out the window.

That was no way to play football. My son was lying on the ground, like he had just fallen asleep there. All the boys gathered around him, looking quizzically at him. Just as I got a little scared, he moved his leg and began to sit up. By the time I got to the door, he was heading toward our gate, holding his head.

All he said was, "I'm tired. I don't know what happened.' That was the first faint. He had never fainted before even under a blazing August sun, kicking soccer balls down a field. By the end of the week, it would be almost one a day.

The saga began.

Saturday, October 11, 2008

Starting To Tell a Lifetime

Well, it took some time before I really wanted to start writing this. I was not sure how to say all the things that needed to be said. I also wasn't sure if disclosure is such a great thing. I mean, do I really want to tell complete strangers details of our life? Do I want the scrutiny or even the ridicule (I have been on the internet 20 years, I have seen A LOT of flames).

But when I think of someone who may be searching for answers, like I was, and then they read about us and have that magical connection moment, I know it will be worth it to have opened up and told someone. Making a difference for even just one person will be worth it. After a lifetime of questions about a sister of mine, and part of the health questions about my son, we were introduced to the world of sleep apnea. Specifically Obstructive Sleep Apnea.

There are other worlds I have been introduced to (RSD, Back Issues, Shingles, Epilepsy, Autism, Asperger's, Degenerative Eye disorders, the list gets long), and I may touch upon them in this blog, but this is the one that blew the roof off of our smug little world.

If I say that both my son and my sister always had sleep issues, I would be understating it. The thing is not that we didn't know they had sleep issues, is that no one, NO ONE, thought anything of it. Not a single pediatrician ever said, Hmmm. "You say, she sleepwalks and snores, and destroys a bed every night? Well, she is growing wonderfully! See you in three-six months." Or it was, "it is not big deal that your 14 month old snores like an old man, he is off the growth charts. He will be just fine, you wait and see." If I sound cynical, it is because we have waited and we surely do see now. We see damage and wasted years, and hurt feelings, misunderstanding and lost opportunities. All because everyone thought there was no big deal.

For the lives of two people, it turned out to be...a very big deal.

For the older one (my sister), this diagnosis brings closure to a question of whether she was crazy, on drugs or just didn't give a darn. For the younger one (my son), it lead to another disorder that may alter the rest of his life.

It has already robbed him of 6th grade.

More to come...

Intros - More Than a 30 Second Infomercial

Okay, don't you just hate those? "Please describe yourself in 30 seconds or less." Ha! Not possible. Runs against the grain. I am not a soundbite and neither is my life. I hope to be able to slow down a little and write some. Not in 200 - 300 words, but in a full explanation of what I want to say.

So, for this intro, I am going to put in some info from a profile on another site and whatever else hits me. Here goes.

I am a member of a very unique family.

I am a wife to a wonderful husband (sometimes!) and mom to two fabulous boys. While that sounds ordinary, each of us battles different chronic illnesses or diseases. We all look perfectly normal on the outside, but we have struggles that make it difficult to function.

I am visually and hearing impaired, and have mobility impairments (herniated discs - 5 in all) as well. I now know that I have an allergy to dust mites, those pesky little critters you can never completely get rid of. Due to this allergy being untreated all of my life, I now suffer with multiple chemical sensitivities. My allergist is working to strengthen my immune system. I will let you know how it goes. I battle high blood pressure and diabetes through diet and medicine, both traditional and natural. I have recently been diagnosed with bruxism, TMJ and TN-trigeminal neuralgia.I have had numerous other illnesses throughout my 20s and 30s (RSD-in remission, Bells Palsy, optic neuritis, vertigo-recently returned). Now in my 40s, most days I am able to function as a homemaker, but not always. I still have good days and bad.

My husband has epilepsy (under control with meds) and anxiety disorder (being treated with meds and therapy). My oldest son, 15, has Asperger's syndrome, a form of high functioning autism, and my youngest son, 12, has just been diagnosed this year with moderate Obstructive Sleep Apnea (OSA), Delayed Sleep Phase Syndrome (DSPS), Chronic Fatigue Syndrome (CFS) and Dysautonomia/POTS, a disorder of the autonomic nervous system.

And I will add in another member of my family who you may hear about on a regular basis; my baby sister, age 33, who has recently suffered 5 small strokes. She has diabetes. When she is not working, she stays with us.

I am the advocate in the family, making sure that each receives the best care, accomodations and support they need. There are good days and bad, but I mostly try to find something uplifting to say. Not because I am a pie in the sky kind of person, but because we all have to survive in spite of our adversities.

There is so much more to say, but that is what the blog is for. I will write about our lives, food (I love recipes!), old movies, books and anything else that comes up. But mostly, I want everyone to be able to feel they can make it in this world; however your family is made up.