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.

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

Happy 4th!...

Faulty Elevator...

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.

An update...

This is the first chance in the past several weeks that I have had time to sit in one place for long enough to think straight. I know I need to update everyone, but I have no idea where to start. I will just list things off as they come to mind. This list is not necessarily in the order that the events occurred but by brain is too fuzzy to give you any more than the basics.

My grandfather had been having pain in his arm, back and shoulder for a bit over a month. When he finally decided to go to the doctor's office to have it checked out we had several very tense days because the doctor thought there was a possibility of a "malignancy in the bone". The test results are all back now and I am happy to announce that he does not have any form of cancer. They have come to the conclusion that he has a fractured disc that is pinching a nerve.

I had an air conditioner tech come to look at our air conditioner and give it a thorough cleaning. He informed me that I needed to shoot the AC and put it out of its misery. Samantha has a severe heat intolerance and has massive seizures when she gets too hot. There is only one company in our town that works on this particular type of air conditioner. When I called them I was informed that I needed to replace both the AC AND the furnace at the same time. Why? Well it seems the brand of furnace that is installed directly between my kids bedrooms has this nasty tendency to suddenly burst into flames! So, I ask the guy how much it would cost us to replace the entire unit...

$4,300.00 US Dollars

We can not afford a loan payment even IF the bank decided to give us one. We have nothing in savings. We bought a window unit for the living room in an attempt to keep Samantha out of the hospital. It is still getting too hot for her in the house during the day. Samantha had to have her emergency medication last night because she was having such bad cluster seizures I was afraid I would end up calling an ambulance.

My fave cousin has been having massive "female issues" lately. I wouldn't be quite so worried about her if she hadn't already had cancer of the female persuasion once. She is going to have several different procedures in the coming weeks and I am so worried about her. Everything that her doctor is talking about doing seems relatively minor, but I wish I could be there to support her through it.

My Mom has been having issues with the pain from her knee replacement operation. She is frustrated with herself for not being more mobile and farther along in her recovery than she is. The doctor thinks that she is doing phenomenal. I understand a little better now where I get my tendency to be 100 times harder on myself than I am on anyone else. It seems to be a family trait.

As if that was not enough... I am worried about my wonderful husband. He got some bad news about his brother's health today. I don't really feel like I can give any details out because it isn't my story to tell, but I am worried about how Darrell is going to handle this in the long run. No matter how many times they have fought, he still loves his little brother with all his heart. I hope that everything works out for the best but right now I don't even know what that would be...

I am so stressed out about everything that it is aggravating my various medical issues...

On the up side... Darrell got a better job that he starts at the beginning of July and I am up for a raise at work. I'm not sure how much it will be, but at this point ANYTHING will help.

I guess that's all for now... See you next post!

Things to ponder...

I simply do not have the time or energy to fill everyone in on the events of the last several weeks. So I am going to take the lazy way out and post some bumper stickers that have caught my eye lately. Some make me laugh, some make me wonder, and some make me think that the evil little smurfs are reading my mind again... ::giggle hysterically:: So sit back and enjoy!

And... Last but not least... My favorite question this week...

The happy couple! This picture was taken at my wedding almost two years ago. Cutest couple over 65 (notice I am being very vague about their ages so my grandmother doesn't get upset?) on the entire planet!!!

55 years...

My grandparents will be celebrating their 55th wedding anniversary this Friday. They have always been such an inspiration to me. Even when they "fight" you can tell how much in love they still are so many years later. They are such a perfect match for each other. My grandfather can be a royal pain in the behind from time to time because he is one of the most hard headed, stubborn men on the planet. My grandmother has an almost super human ability to politely nag anyone into submission. (Although it was probably developed by all the years of dealing with such a hard headed husband.) They can be your worst enemy and your best friend. (Sometimes both at once.) I have watched and looked up to them my entire life. I know what a lasting relationship is supposed to look like because they have shown me by example.

It (for them) has been a huge mixture of: starched underwear; bleached ceilings; a psychotic poodle; two daughters; two grand-daughters; two grand-sons; two step grand-sons; eight great grand-daughters; two great grand-sons; one mountain house; countless camping trips; hundreds of friends; unending tennis games, band rehearsals, doctors appointments and hospital stays; street football; family gatherings; church; and thousands of hours of prayer; all wrapped up in a thick cocoon of love. Love and respect for each other.

If I have learned nothing else from my grandparents, they have taught me to roll with life's punches, be strong when the world is falling apart around you, give twice as much love as you get, and have faith that God is holding you when you fall.

Chill pills (the LONG version)...

I have recently come to accept the fact that I do not function properly without medication. My acceptance of that fact is a huge deal. For those of you who have not been around for the last 13 years of my life, I will explain why this road has been so hard to travel.

When I was 13 years old I started loosing chunks of time. My Mom took me to see a neurologist who promptly diagnosed me with seizure activity, ADD, bi-polar disorder and manic depression. I suddenly went from being a perfectly “normal” teenage girl to having a whole list of problems that required medication.

I felt so defective.

Prior to starting all the medications I had been depressed from time to time, but never to the point of wanting to harm myself. Once I started the medications that changed. I stopped feeling happy. I felt numb or sad all the time, but never happy. I was an actress though, and I didn’t want my Mom to worry about me, so I pretended that everything was fine.

When I was 15 years old I had a couple of traumatic experiences that sent me into an even more desperate state of mind. I acted like I was happier than I had ever been for two weeks. Then one night before bed I kissed my Mom and Dad goodnight, told them I loved them, closed myself in my bedroom, took three handfuls of medication and went to sleep. By the time my parents found me the next morning it was too late to pump my stomach. I slept for a long time… and then I woke up. The hospital sent social workers and psychologists in to evaluate me. I had them eating out of the palm of my hand. I’m not sure if it says something about what a good actress I am, or if it speaks more for the stupidity of the doctors in this area, but by the time they left the room I had them convinced that the overdose had been an accident and that I was perfectly stable.

Not long after that, with my Mom’s loving support, I weaned myself off of the medications. I hated how it made me feel to take them. Because of that experience I have been highly against the idea of medicating myself. I was terrified that I would have another bad reaction and loose my daughter to the state because of it.

Everyone has a breaking point. Mine came after years of chronic pain and a diagnosis of Fibromyalgia. The stress and worry brought about by being physically unable to care for my children because of pain, and the support of my wonderful husband and Mom, lead me to my doctor’s office recently to try again. First I was started on a regular regimen of pain medication to help me physically function. Next came the “chill pill” to help me stop hating myself and stop beating myself up for every minor mistake I made. After that came the medication to help me focus and remember all the massive amounts of information that I need to keep track of for my family. Last came the mild muscle relaxer to help my body relax enough to repair itself a bit while I sleep.

I am now functioning better on all levels than I have in years. I only have mild pain, I am focused at work and home and emotionally I have leveled out enough not to stress over EVERYTHING that goes wrong. I am still not crazy about the fact that I DO require medication to function, but I have come to the gradual acceptance of the fact that I am a better person when I am pharmaceutically enhanced.

I like myself more. I enjoy my children more. I get more done.
So maybe medication is not as bad as I once thought…

...