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Monday, July 24, 2006

On the road again...

Hello again!
I wanted to drop a line to everyone before I leave town this morning.
Please keep us in your thoughts and prayers. We have a six hour drive ahead of us today to get to Fort Worth to see my daughter's specialists and have some testing done.
We have made this trip more times than I can count, but it is still very hard on my body. Samantha will be in the hospital for at least 24 hours for a video EEG. This trip could result in yet ANOTHER operation for my beautiful girl.
That would bring us to 13 operations in 6 1/2 years.
I have done quite a bit of research on seizure control options to prepare myself for this trip. Now the only trick will be getting her doctor to listen to me and be willing to work with me.
Please pray for us while we are gone, and my husband too. He is unable to go with us this time and will be stuck at home with our son. Grandma is going to help out during the day while Darrell is at work (because Grandma is just GREAT like that...) but Darrell will have the little monster by himself the rest of the time.
Auron is ALL BOY.
This could get interesting...

Friday, July 14, 2006

If you want to understand me...

I borrowed this letter from this web site:

http://www.angelfire.com/zine/fmsangel/let1.html

I wanted to share it with everyone so that you might better understand me and the Fibromyalgia that beats the crap out of me every day.

A LETTER TO THE HEALTHY WORLD FROM THE LAND OF CHRONIC PAIN AND FATIGUE by Avalon 103

If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. Because you didn't know how sick I was, you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you.

WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA.

1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.

3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

WHAT YOU SHOULD KNOW ABOUT ME.

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else. I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes... or their bodies.

Wednesday, July 12, 2006

giggle for the day...

I am having a bit of a rough time with my kiddo's health right now so I have very little time to blog. This made me giggle today so I wanted to share it with you guys! I hope you are all doing better than we are right now...

Some people are like Slinkies.
Not really good for anything,
but you still can't help but smile
when you see one tumble down the stairs

Sunday, July 02, 2006

Faulty Elevator...

Photobucket - Video and Image Hosting

There are times in my life when the trials and complications brought about by having a child with a disability seem almost normal and mundane. Times when we have become so entrenched in our daily routines that we fail notice how different things truly are for us. During those times I can see nothing except my beautiful daughter Samantha.

And then there are the other times. They are rare, but they do happen.

The times when, just for a moment, I can see her as the world does.

It breaks my heart.

I struggle with the acceptance process during these times. You would think that the diagnosis of a disability would be shattering and then get better or easier over time. The reality of living with that diagnosis for the rest of your life, day in and day out, is often like riding a faulty elevator. Things seem to be easier for months at a time, but in reality you have simply grown used to what ever it was that caused the initial shock. You develop emotional calluses that protect you from that particular pain. And then the elevator shudders to a stop and suddenly begins to plummet towards the bottom floor again. You gasp for air as your stomach suddenly jumps into your throat making it impossible for your scream of terror to squeak past your lips. You cling to anything familiar praying for time to freeze before you crash to the bottom yet again.

Samantha is having such increased drop seizures that she is in danger of breaking bones in her face or head. I KNOW that she needs a helmet to protect her, but this is a callus I have not developed yet.

I knew for six months before she got her first wheelchair that she actually NEEDED one, but even that took an adjustment period.

It isn’t that an extra accessory or two changes who she is or how I see and love her. But I know that the more equipment she needs will change how others see her. I don’t know why ignorant people bother me so much after six and a half years of dealing with them on an almost daily basis, but they do. I want so badly for people to see her through my eyes instead of seeing “that kid in the wheelchair and helmet that doesn’t talk”. It is hard for most people to look past those THINGS and see my daughter for WHO she is. They see the equipment and the diagnosis while totally missing the phenomenal little girl they are attached to.

And I hate them for that.

My daughter is a fighter. She has survived TWELVE operations in SIX years. She has fought through more seizures daily than most people even OBSERVE in a lifetime. Her smile can light up a whole room and take your breath away at the same time. She has the ability to look into your eyes and see straight into your soul. She makes you notice the little joys in life all around you. She is a miracle.

I only wish I could make the world know that like I do.