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.

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."