Our Children and our Family

Thoughts for Persons with a Disability

If you are lucky enough to have been born into a loving family, you are still lucky if you have that rapport. God knows there are too many divided families in this lifetime, and you are really, seriously lucky. You need not read much further, other than to realize that you are truly rare. You care for your aging mother or father in your home, if need be...you never dump a beloved one into the raining darkness of the outside world. You give of yourself. More books need to be written by you, because the non-disabled simply are unable to fully grasp what it means to be Disabled. On top of that, consider having a "rare" (i.e., underdiagnosed, in my opinion) diagnosis like some of us do, a diagnosis which not only restricts our Activity, but one who leaves us physically incapable of having the body movement necessary to....brush your teeth. 

Positive Side:

1. If you are lucky enough to have friends, they come over to your house (or send their children over to have a 'blast'; 1) because they know you well enough to know that you love children and are able to care for them; and 2) they are like family, with both parties displaying an unhesitating willingness to instantly add another child to the magical atmosphere of your home. And you and your child are not living in a jail house with extremely limited numbers of children in and out of the house. Unable to drive. Unable to get fully dressed and make meals, run errands. Go to the grocery store. Am I alone, or aren't there a Bunch of us, like...like.....out there....that...are "Half Alive"?

2. Before, when I was totally and completely bedridden 24/7, I felt "Half Alive" physically. Now, I have more 'better' days, I understand more, and I am sort of 'coming back to life'. This life is still being 'figured out', and with each slowly passing day, I thank God for the miracle of life. To breathe... Outside air.....But when I was physically "Half Alive", I did not have the awareness that for example, my hair needed combing, or that my shirt needed ironing, or that I only went outside and into the car for a few reasons. I lost my appetite and just forgot to eat. I lost weight, looked gray, and felt hollow. My reasons for leaving the house were depressing for anyone: MRI, doctor visit, pharmacy visit, MRI, MRI, physical therapy visit, doctor visit, doctor visit, MRI, visit the Post Office. 

Gladly, I was blessed with Topya,  a loyal and dependable person and Nanny who became a 'second mother' to my child and helped care for me. I could barely stay alive, and what life I had in me? I needed all my ATP for life itself, for breathing, for swallowing. No, I can't talk on the phone. It is too exhausting. No, I can't go out in the sun, but I'm going to get up, and then I'm going to sit up, stand up, and walk. Especially because they did not think I could do it. Just give me a fight. I'll grit my chin and prove you wrong...and if you don't think I can, then I may just find a place where I am treated like the human being that I am. Just because I have to lay down for half the day, or lay down to get some energy back, does not mean that you can go in to my closet and steal my clothes. A skirt gone here. A dress gone there. All my jewelry stolen. All my baby clothes stolen. A pair of True Religion jeans stolen. Who cares, all material possessions..may God bless whoever stole them and may everything go to good use. My treasures are stored up in Heaven, where the 'real' treasures and awards and banners and tributes to each one of our lives will be waiting for us.

Alive enough to know that people are mean and take advantage of you, but "Half Alive" enough to know you are not in a position to defend yourself.........Yet.

Weird place to be.

3. You could be "Half Alive" for other reasons: your body works, but you know you can't.....make it back home from the grocery store without being...sucked dry of ATP, stupid mitochondria, ill-defined neurological pathways, and misunderstood presentations. You're there, but no one really knows who you are, how this disease affects every day life, and what it is to go through something like this, having  been a former chica doctor walking around in high heels and pearl necklaces in the ORs and the ICUs of pretty prestigious medical establishments.

Why are we just now learning about dysautonomia? How come I've never heard of it before, nor has it been listed in the differential diagnosis of syncope? Why? Why? If I had died, Dysautonomia would be less known. But I lived, and now I want everyone to know what it is, and I want to help The Cause for Dysautonomia and ME. I just can't believe that I'm one of the first persons to document the disease....it would have been better for me if this car accident had never happened....but God has a purpose and my purpose in life is to further these Causes.

 Places that..some people are born into, the rest of us aren't. I wasn't, but I'm doing whatever I can writing the limitations, aggressiveness, possible latency, the idiosyncracies of the disease dysautonomia. Where is all the data? You can not sit there and tell me that it is a 'rare' disease, NOT if it is not even included in the differential diagnosis of syncope. It must NOT be rare. It must be more common than the medical community knows.

If dysautonomia is not rare, and more people have it than previously known, that tells me that there is an unnecessary morbidity and mortality for dysautonomia. 

So how many of us have already died? How many of us had this disease and no one believed that we pass out when we stand up? That we end up on the floor if our brain gets no blood?

Dysautonomia must be more common that we think it is. This disease is partially due to a lack of medical education, a lack of Medical Board Examinations to ensure consistence throughout licensed doctors, and a lack of terminology that 'turns back' to the doctor in order to process what is actually happening.

I believe that what is actually happening is this: doctors don't believe the vague symptoms, and they do not know how to 'put them in a box' and diagnose dysautonomia. Increased awareness in the medical and general population is needed to save lives. Distraught lives that are a devastation, day by day. We're not complaining about 'missing' a tooth or having pain in an anatomical location. We're complaining about a known disease that seems to have been "missed".

Just ask. Ask everyone you know if they ever heard of 'dysautonomia' or 'ME'. Little by little, word of mouth by word of mouth, this word.....d..y..s..a..u..t..o..n..o...m..i..a.

Let's get it out there. People are suffering, and they are dying, and it is simply not necessary. Do you want us all to just die off and shut up? Then you'd never have to validate us and we would just think we are crazy. Don't you think the suicide rate in undiagnosed diseases like this ...could..possibly...lead to someone's committing suicide? We're not talking about apples and oranges here, nor are we near the birds and the bees. We're talking about life.

Life. Being able to live a life. Who says we are not worth diagnosing?

Last Note: there is no word that I know of, in the medical nomenclature, that describes the Syndrome that the doctor has when there IS something wrong with the patient and the doctor 'misses' it, won't validate it, it goes undiagnosed, and the patient suffers to death. Funny.

Perhaps there should be a 'catch-all' phrase for these doctors: Broken Patient:Physician Relationship.        Who cares? Any good doctor. And any human being with compassion, in my mind.

Are we all just supposed to 'go away' and quit bugging the medical system? Or can't they just tell us that they hear us, do research to help us, and then come up with a systematic approach for data generation, analysis, and results. Simple. We are not going away. I'm leaving a trace of my life here. Someone else with dysautonomia or ME is leaving a trace of his life there. We're all working together toward the same goal: awareness and research.

I'm with you. Highest Personal Regards, Dr. M

Disclaimer: none of this is intended to be medical advice for any individual person of course. A doctor would have to see you, to examine you, etc. I wish I could fly around the world and have Clinics everywhere. God Bless Us All.