Google - Not a medical pancea.

 

“You should write this, “ Patty said to me, “You need to share this story of triumph using Google.”

I wish I hadn’t said yes.

Dr. Google

A quick search of Dr. Google on Urban Dictionary enlightens us greatly about the view of using Google to research medical terms and symptoms:

Ewww…that’s not good. But it does provide the foundation for searching on the basis for that top definition. That’s also the most polite, albeit still insulting definition. No doubt written in 2009 by someone who never lived with a rare disease. 

It’s acceptable to enquire of Google about your favorite Actor, your local Politician and news of the day, regardless of factual content, and build a condemning or supportive argument but don’t you dare use it look up why your child may suddenly be seizing after 3 years of typical development. 

Who EXACTLY holds this negative view of patients using Google to search about their symptoms or how to treat their diagnosis?  I decided, after using Google successfully to order pizza the other night, I was qualified to delve into answering this question. 

First I went to U.S. National Library of Medicine under the National Institute of Health because surely there must be research studies on this phenomenon. Certainly we have ironclad, peer-reviewed studies about the use of Google as a research tool for the layman. There are plenty of articles and much jocularity about Dr. Google and the person identified with that moniker. I came up with a big zero. Nothing in NCBI about this subject. Curious. Where are authors and bloggers getting their information?

Using Google to research on Google as a valuable medical tool is like asking about positive side effects of the plague.  Truthful positive responses don’t really exist, instead they are painful reminders that not everyone considers death a win. Instead, I read many of the articles that were on page 1 of Google results, because; let’s face it, the joke…

Where do things do to die?

Page 2 of Google results

…is scarily accurate. 

Google has been around since 1998, I first used it in 1999 and clicked on page 2 of the results a mere 18 months later. I joke. In reality though, why is that joke?  Having worked in the technology industry for almost two decades, I learned a lot about what NOT to use in a search string and how those results are generated. Page hits and ‘link-outs’ play a roll. If something ‘goes viral’ it will increase its search ranking. Alternately, if no one is talking about it and you are the only source of information, your ranking also improves. Get everyone to talk about you is the actual message. Google is the ultimate popularity contest. Case in point: the top search for Saturday, July 7th, 2018 with over 1Million searches was UFC 226. I have no clue what that is and I didn’t click on it because the picture…told me all I needed to know. 

Not everyone has that knowledge of search rankings and I thought, based on the articles I’ve read on Page 1, that people must be searching some pretty terrible things. 

So…I Googled it. 

Google: healthy source?

I found, on Page 1, The 2017 article “Dr. Google: The top 10 health searches in 2017” published in the Harvard Medical School Blog by Dr. Robert H. Shmerling Faculty Editor, Harvard Health Publishing which listed, aptly enough, the top 10 Health Searches of 2017. I thought: this should be very telling and I geared up to be amazed at the medical wonders and validate the ridiculousness of Dr. Google. I was shocked.

1. What causes hiccups?

2. What can I do to stop snoring?

3. What causes kidney stones?

4. Why am I so tired?

5. How long does the flu last?

6. How to lower cholesterol?

7. What is normal blood pressure?

8. What causes high blood pressure?

9. What is ADHD?

10. What is Lupus?

Clearly, this list doesn’t read like I expected. I envisioned searches about how to remove your own pancreas.  Or what does it mean when my pee is blue? This list reads like people AVOIDING going to the Doctor not people doing their own home surgery. This can’t be right based on the other Page 1 results. 

I mean, I can understand how a couple of these could lead to problems for medical professionals but really, how could it be bad or overwhelm the medical system to know what causes hiccups? The number one search result for “using Google for medical diagnosis”  “The Dangers of Using Google to Self-Diagnose” written by Jennifer Abbasi for Women’s Health Magazine explains exactly the problem with it: 

You are suffering from anxiety, this search is making it worse and you WILL overreact and think you have cancer.

That’s the gist, not a direct quote.  The article provides ways to stay calm and not overthink your searches, which is very helpful of course and much more realistic than telling people to stop Googling at all. Which is what Cari Romm of The Cut suggests in “Doctors Really, Really Want You to Stop Googling Your Symptoms”. She also points to the psychology of it: 

You’re stressing yourself out.

People stress about things they can’t control, their health is a big stressor so they search for ways to improve their health and feel better about themselves. Oft times the sites they seek are made to help them feel good but not actually get better.  When you Google, do so with the mindset of finding possibilities, not definitive outcomes. People are unique and respond differently, just because someone said they had success doesn’t mean they are telling the truth, especially if they are selling something. 

Everyone is doing it

The Internet will always be used to search for information, and Google will lead the way. Telling people to please stop, no matter how desperate the plea, will never fall on listening ears. Any change in the defining the perfect way to use Google as a medical tool is a banner that has to be taken up by Doctors and Patient Organizations because people will use Google to find the answer to whatever question or concern pops into their head. It’s ingrained into our daily routine. We must teach people how to search effectively, because they are already searching. A movie with James Cagney comes on and I want to know what other movies he was in. or who his wife was, and when he died. Without thinking, I search for it.  Sometimes I even just ask Alexa to search for that information. Internet searching is not limited to Google but the term Dr. Alexa has yet to have an Urban Defintion so we’ll pick on the giant, shall we? Really, how many times in one day do you “Google it”? 

Google processes over 40,000 searches per second or 3.5 billion searches per day. Someone is Googling and it’s not all about medical information. In fact, Google estimates that 1% of searches are about medical subjects. People are not pre-occupied with diagnosing themselves. 

In fact, the Page 1 search results are interesting by themselves. Authors that spoke to Doctors about the ‘dangers of Googling your symptoms’ spoke to Psychologists and Health Policy experts, no Primary Care Doctors that have suddenly encountered a flood of people wanting to use elephant urine to cure the common cold. There was, however, an Oncologist quoted in the CBS News story:  “The Hazards of self-diagnosis on the Internet”. Dr. Anton Bilchik chief of medicine and professor of surgery at John Wayne Cancer Institute in Santa Monica said of his patient who came in thinking she had cancer: 

"In her case, she was pretty convinced that she had something very severe," BUT “The spots weren't cancer at all. They were benign tumors that were successfully removed in surgery four days later.”

But, she DID have something that needed to be removed. It wasn't cancer but it was something, wasn’t it? Did she overreact? Yes, she made herself worry over something she had built-up in her mind as a possible death-sentence.  And that confirms the other Page 1 articles about the psychology of searching your symptoms. Why did she do that? Was it the SEARCH results themselves pointing her only to cancer? We would think so based on the article topic, but, nope. From the article:

"I started to feel ... I wouldn't even describe it as a pain, more like a weird feeling in one spot of my stomach," she told CBS Los Angeles reporter Andrea Fujii. She went first to an urgent-care clinic where she had an MRI. The test showed some unexplained spots on her liver and the doctor didn't provide further detail on what exactly they were.

“"He's like, 'Well, you have about three to four nodules on your liver. We don't know what they are. They could be cancer. They could be benign,'" she said.

When she went home, her worry and desire to understand what could be happening led her through several Internet searches on cancer and liver cancer. The possibilities she read told her the situation could only be bad and worse.”

According to her own self-report, the Doctor she visited put it into her head that she had Cancer and she was following up on that suggestion. Her response is her natural state, heck it’s everyone’s natural state when they hear Cancer, it’s not the state of the search results. She could just as easily blamed the Urgent Care Doctor because when a Doctor makes an off-the-cuff statement like that, why wouldn’t you think about it? He said Cancer. The big ‘C’. Of course she hit on that, of course it stayed with her and of course she wanted more information. 

That’s not a bad thing. 

The impression I get from reading these articles is that a few Doctors that are complaining are actually feeling inconvenienced because someone is asking them a question. And patients are overreacting to information given to them. Not that they have displayed any validity to the statement that patient’s are taking ‘Google Stacks’ in on a regular basis, Doctors hate that and people are severely hurting themselves and others because of it. 

We want to encourage the gathering of information.  The goal is a more educated population: knowledge is vastly superior to ignorance.  We don’t want to discourage learning about your health so you can make informed decisions. 

The Information Gap

One of the biggest challenges for Doctors is getting their patients to engage in their own healthcare. Why is that? The patient voice is critical in the differential diagnosis. If the patient is not able to tell you what their symptoms are, we can never know that that he or she has a sharp pain in their neck. 

When we break it down: Doctors provide a possible diagnosis initially and work toward a positive diagnosis eventually. Sometimes the diagnosis happens in one office visit and, other times, there needs to be many follow up visits and tests. Regardless of the time to diagnosis, we first have to understand the manifestations the patient is describing and then build the case for what could be the underlying problem. To argue against Google as a valuable tool to help us accomplish this is to argue against collaboration with a patient. Say that out loud and you will understand how ridiculous it is to tell someone NOT to Google for a medical explanation. You are arguing against a patient, who is interested in finding out what is happening and learning more about their condition, and that's why they came to the Doctor; they want answers. When we think of Google searching by patients in this way we realize that Number 7 (What is normal blood pressure?) most likely prevents overreaction and multiple trips to the Doctor.

In the Article “10 Questions Doctors Wish Their Patients Would Ask” by Amir Khan a Health + Wellness reporter at U.S. News the number one thing Doctors want you to ask is: 

“I Googled my symptoms, but what do you think?”

Wait, that means they don’t actually mind you searching and they want to encourage you to bring it to them for discussion?  But that’s contrary to what we are being told by Google itself! Which one is correct? DO Doctors hate patients bringing in ‘Google Stacks’? Are patients being made to feel they need to stop investigating their own health? 

Doctors don't want an uneducated patient that doesn’t freely communicate; they want you to trust their opinion as much as you trust Google. They want you to tell them how you feel, both physically and emotionally. They WANT that knowledge.

Can Google be trusted? Yes. It can be trusted to show you the top search results for what you entered into the search box. That’s it. It cannot verify the veracity of what you read, it is not a filter of truth and justice, so that’s on you. 

You must familiarize yourself with the more trustworthy sites. Sites that have science behind their claims, not sites that tell you how to cure yourself. I hate to point this out to you if you haven’t already noticed, but snake oil salesmen didn’t go away, they bought URL’s and moved online. You have to be careful whom you trust. If you trust your Doctor (and why wouldn’t you if they have become a part of your team) then why aren’t you taking these things to your Doctor and why wouldn’t your Doctor be willing to discuss them?

Let’s examine this: if the patient brings up a possible diagnosis why would a Doctor not entertain the possibility of an answer and therefore a solution? Also, when a patient presents a misconception he or she read on the Internet, why wouldn’t we want to dispel that myth? Why wouldn’t we want to get the correct information out there sooner, rather than later? It WILL come up at some point. Let’s address it now and move on. If it’s correct, then hooray for earlier treatments and reduced visits. If it’s not, it cost a few minutes and it’s something to check off the list of possibilities. Doctors want to cut to the chase and move forward using, or not using, elephant dung as a cure for goiter and the common cold.

Our own favorite Doctor once wrote this for a symposium we presented at:

“In this age of technology and digital social connections primary care physicians should be willing to embrace the idea of networking for patient care.   Even specialists sometimes have a hard time with this type of coordinated care. The hard part for physicians in a busy practice to wrap their minds around is the fear that this is going to take a lot of time.  If I can read a couple of articles, understand the science and contact the principle investigator to get the family headed in the right direction then I have perhaps saved some unnecessary visits, studies and aimless wandering.  This is frankly our job as primary care physicians,  to take a broad differential and narrow the scope of possibilities to provide definitive treatment or a logical path to follow to get a diagnosis.  As we are talking about rare diseases we should realize that this extra effort will usually only be required in the minority of patients.  We should also realize that this extra effort will make all of the difference to the families we care for.”

We love him. I will make sure we name a grandchild after him.

The PricewaterhouseCoopers Health Research Institute listed the number 1 thing patients look for in a practice is Transparency.  PracticeBuilders.com details what patients express about transparency:

“It is acceptable if a physician does not know everything about their illness or diagnosis, but patients expect their doctors to share as much as possible. Uncertainty is okay, as long as patients are aware of the truth. Also, patients understand that doctors are humans, too, and that medical errors do occur. While patients usually never demand retribution, they do want a confession of the error and an assurance that the doctor is trying to fix the error. You must always educate your patients on the success rate and the risks involved with related procedures.”

This is encouraging to read. It appears that we are slowly moving toward admitting we are all human and we all want forward momentum and not dwell on the failures so much as work toward successes. That’s a pretty mature stance that would provide true collaboration and partnerships. We are all human and we all make mistakes but when we admit our failures and learn from them, lives are changed for better. 

We’re on the same team 

We’ve established that Doctors aren’t really that upset about patients researching, and it actually may help them along nicely toward finding a treatment.  We’ve also established that patients aren’t tremendously interested in diagnosing themselves but understanding that diagnosis or treating it themselves. ‘Local honey for seasonal allergies’ was suggested to me by my Aunt over two decades ago, I found it on Google last week. Cool huh? My Aunt knows nothing about seizures though, I asked. 

The fact is that people will always use Google to search for information. We should ensure that patients have the information they need. If they can’t get that in the office they WILL go online to find it. 

Recently, I heard a patient organization leader make a statement that went like this: 

We need our patients to stop using Dr. Google. 

And she rolled her eyes. Everyone in the room laughed. I smiled at first and then thought: oh wait, she’s serious! What a spectacularly bad idea! You want to encourage your patient population to seek knowledge about their condition, you want to provide that information when you can, but you don’t want them to use Google to find it? 

Of course people are going to use Google. As a patient organization leader I count on it. I had to have missed her point. Was she saying: “Don’t search for your symptoms. Let me tell you what your symptoms are? “ Because, how does that work? People Google. Internet research is part of the scientific method in fact. What you need to do is not mock people for looking for answers. Stop using the phrase Dr. Google when someone is looking for answers online. 

As a patient leader, I need to make sure they get the correct information about their condition. I need to teach them how to decide what information they can trust, what information they should file away for future use and what information they should  never bring up in mixed company.  I need to always be available to help them find answers and encourage them to discuss that information with their Doctors.  When I asked my KBG families what was the first thing they did after they received the diagnosis, 90% Googled ‘KBG Syndrome’. And they found our Foundation because when I searched for it years ago I found Genetic Home Reference with very little information on it and we decided to change that. That is how Google is used and that is why I need to ensure the KBG Foundation is on Page 1. I need to build collaborative teams of patients and Doctors and not create a chasm that only I can fill. Rare diseases seldom have comprehensive answers and all hands have to be on deck to find those answers. YOU have to provide the information people are searching to find not condemn those who do. Last year, we updated the Genetic Home Reference page with more accurate information. That was a wonderful day. 

It felt to me like this leader had disdain for her patient population and felt that only she and her team had the answers people needed, even if the patient didn’t know what it was they needed.

Still, I ruminated on what she said for a while and could not understand why a Doctor-respected patient leader would laugh at using Google as a research tool. I asked my other rare friends about it. Guess what? They ALL Google too. Even the Doctors. Who knew? 

It’s not funny when you are encouraged to stay ignorant.  No relationship is healthy when it’s based on co-dependency. It’s strength through collaboration, and the greatest tool for collaborative information is the Internet and Google’s marvelous search capabilities. 

One of my friends, who also happen to be a nurse, made this statement:

“I think the main thing to remember is that Google is a tool but not a medical license. Like a dictionary can tell you how to spell a word but won't necessarily give you the meaning behind a passage in a book. Doctors do a lot of training and have a lot of experience that can help them put the research into perspective. “

Not all sites are created equal

When you do a typical Google search it’s pretty easy to pick through the results and decide which is most valuable to your need. With a medical search the results can be less than clear and concise, especially if they contain medical terminology. An easy way to know what sites are legit research-based sites is the domain.

.gov

.edu

.org

These domains are reserved for only certain entities. Usually that means a higher level of trust can be placed in the information contained therein. 

The world-renowned Johns Hopkins Hospital has some fabulous guidelines for good searching. First: Use their search tool instead of the entire Internet. 

I entered KBG Syndrome. 

<crickets>

And promptly returned to Google where I actually received results. 

While their (Johns Hopkins) database doesn’t know everything. Their other suggestions are great though:

Check to make sure the information has been updated recently; anything over 3 years old could contain outdated information. 

Check the credentials of the author(s).  

If the site pushes one idea, or a self-serving concept, leave it and move on. Look for the science!

Patient organizations are a great place to find emotional and sometimes financial support for your condition. There may be several sites for your new diagnosis, I always prefer the nonprofit over the for-profit sites and check them out on Charity Navigator. This may not always mean they are the best support but it will help determine how focused they are on community service. 

Private groups that are the most beneficial are those that provide positive and yet realistic support. If the organization or its admins are constantly at the center of contentious conversations and encouraging aggression, this is not conducive to a healthy approach to collaboration.  Find a group that supports one another and shares willingly to achieve a central goal. Make sure that goal aligns with your ideals. It’s not a competition, it’s a collaboration to find a cure.

The one where lives are changed

The story that got Patty Weltin of Beyond the Diagnosis so eager to get me to write this is the one I tell about our son’s first diagnosis, the use of Google to discover it and the impact it’s had on others outside of our family.

In 2011, after 6 years of typical test results we finally got the one test we had asked about for 6 years and was told wasn’t necessary: a lumbar puncture.

That test result showed he had low levels of a major neurotransmitter: 5-MTHF. The official diagnosis for this is Cerebral Folate Deficiency (CFD). As we sat in the Doctor’s office trying to Google CFD, I asked the Doctor: 

What causes this? Is it genetic? 

He said: Could be a lot of things, but the important part is there is a treatment. 

Okay, but what caused it? We couldn’t let it go. We started the treatment, Follinic acid, that night and it was nothing short of a miracle. Our son slept through the night for the first time in his entire life. We awoke and asked each other: Did you put him back to bed? Nope. He was in bed and he had not seized.  

The next thing we discussed was WHY this happened, was this standard with CFD after treatment? Because with our boy things change rapidly all the time. We expected failure even with success. And so we both Googled and sent each other case studies, back and forth, all morning. In the middle of the day, I found the paper ”Cerebral folate receptor autoantibodies in autism spectrum disorder. Frye RE, Sequeira JM, Quadros EV, James SJ, Rossignol DA. Molecular Psychiatry. 2013;18(3):369-381. doi:10.1038/mp.2011.175.” 

I sent it to the husband and he agreed we needed to present it to our Favorite Pediatrician.

A few days later, I sheepishly handed the good Doctor the paper and asked him what he thought of it. He took the paper, read the paper and said:

“I like him for this. Let’s get him tested.”

Well, that was easy. I breathed a sigh of relief. This paper, if he tested positive for Folate Reductase Autoantibody, meant we needed to dramatically increase the Follinic acid. If he had this autoantibody then it was still blocking at least some of the medication. Doc picked up the phone, called the lead author and emailed me the instructions for testing before we left his office. Weeks later when we received his email with the subject line:

“Yep, He’s got some!”

we high-fived each other and prepared for a change in plan. According to the author’s suggestion, we upped his medication and I scheduled an appointment with one of the other authors of the paper to tailor his treatment further. The appointment was an entire year later so his wonderful Pediatrician agreed to oversee what he could.

Months later we had a follow-up appointment and when we walked in, the Good Doc saw us and called out: "There she is! Hey! Come over here."

We walked over, hugged our hellos and he introduced me to the other Doctors in the practice who all made pleasantries and then asked questions about the Folate Reductase Autoantibody. I happened to have another copy of the paper on me so I handed it out. It looked cool, even though it was for his school teacher who was not there that day. I was all: BAM! There ya go. Slick. It was slick. 

After we finished the appointment, the Doctor told me something that made me cry and made me realize how important our son is to the world and validated why we always need to do our own research. 

He told me that he was so sure this autoantibody was a big player in Autism that before he even ordered a lumbar puncture for his patients, after presenting the concept to the parents, he put 3 of them on Follinic acid. Follinic acid is an analog folate, anything not used by the body is secreted and no one is the wiser. If it works: great things happen, if it doesn’t then it doesn’t and your body does away with it.  Two of the patients were doing so well, they were no longer on the Autism Spectrum. They were no longer on the Autism Spectrum. The third was doing very well and may soon be off the spectrum as well. He told me that our son and our research have literally changed lives. He told me that one of the Mothers wanted me to know that we saved her most precious valuable: her son and she wanted to thank us.

I put my hand on my boys shoulder and he looked up at me. I thanked the Doctor, hugged him again and went out to the car and cried. A good cry, a cry that meant all the battles we had up to that point, all the seizures and the heartache had a positive impact.  I cried that I had the brass to use Dr. Google and take it to his Doctor who took me seriously. 

So, stop saying Dr. Google and maybe I’ll start taking you seriously.

9/11

The phone rang, 11 years ago, and not unusually, Glenn answered. What he said next and what we witnessed next was unreal, horrifying, heart wrenching and unifying.

Turn on the TV.

And how I wish we hadn't. I wish I hadn't watched that first tower burning, how I wish we hadn't seen the second plane hit and watched, through tears and the news channels, in an incredible use of poor taste, played those images over and over. It was as if the news channels were almost gleeful that something had happened that could now devote hours upon hours to explaining and analyzing, criticizing and inflaming a response. It was NOT all major networks finest hours. I wish I did not have those images of people, wives, daughters, sons, fathers, jumping from those burning buildings, oh I wish those images were not seared so deeply into my sub conscious. I wish I had not heard myself saying NO, NO, NO so much that I heard it in my dreams for weeks.

One unimaginable thing after another that day. And yet, someone had imagined it, had practiced it and had relegated those people, who were doing the most basic of things, working, to being victims. And their families, to being Widows, and Widowers and never giving them the chance to say 'I love you' one last time.

As the first hour passed, Glenn called one of his employees to find out if his brother had gone to work that morning. There was no word. He had not been heard from. It took another 3 hours to hear that he was OK. Three long hours.

We had visitors with us that day and we had planned on going to Disneyland. We could not help the Special Needs young man understand what had happened. When we told him that Disneyland was closed, he couldn't understand why and was very upset by it. THAT was difficult. One wanted to scream that people had died and we had to be careful, but he didn't understand that. It was then, I learned patience. THAT moment. I mean, the patience that comes with having a Special Needs child. I had patience in spades before that but I learned what it is to have to distance yourself from YOUR moment for a time, even if it is a moment shared by millions of other people, it was not shared by that one young man. He could not grasp it. And maybe he was better off. I had to repress my reaction and replace it with compassion, understanding and patience, while we tried to get him to understand that we could go some other time. Tomorrow? Probably not but we will see.

Honestly, I don't remember when we went. I know we did, but I don't remember it. I have the pictures but they do not illicit any memory of the event. I was too shocked still, too saddened. The only glimpse I have of the Disneyland day after the attack was of me holding onto to Glenn crying.

As the stories of the heroes of that day emerged, so did the flags. On every porch, on every car. The ribbons were everywhere too. I, naively thought, this changes everything and we will be more unified. It did, and we were, for a while. I am sure that in each part of the country the timeframe was different but in California, it lasted about 5 months. But even after 5 months, we were still bombarded by the joy in the streets elsewhere at the death of other human beings. To this day, that STILL shocks. A lot of things shock me about that event, but that is the strongest: Joy at death.

Over the years, many things have changed, and all things are still the same. But me. I will forever hold that memory with me. Because I will NOT let it go. I refuse to let it be a story in a history book. I remember it. I was changed by it. I was overwhelmed and consoled by it. I will not apologize for my tears this day. I will hold my children longer and be grateful for the experience life has yet to teach me. I reflect on the past, and I relate it to the future, so that I might learn and I might teach my children. How different might the future be because I honor the past?

Please...shut up.

I have really been avoiding Facebook as much as possible. Trying to get caught up on the family and friends and trying to avoid the other crap.

Today, after Bug's 2nd day of 4 seizures and not eating too well, and after a week and a half of watching him struggle just to walk, sometimes even sit up, I have found myself really resenting people complaining about...well...mundane things and people supporting them as if they lost something really valuable. I mean, really? Where the hell is the perspective?

I read the posts of people who have told me that Bug has his problems because I am not going to church, complaining about how horrible it is that their scrapbook page didn't win an award and yet, they tried really hard on it and it was beautiful. Or how I should just pray more (as if they know how much I pray) talking about how excited they are about the latest wizard/vampire/escapism novella/movie is being released. Correct me if I am wrong but isn't that idol worship of sorts? At the least it's giving credence to something that has a demonic undertone to it? I don't invite any kind of evil into my life, except maybe modern medicine. I have been hiding those people, maybe later I will get around to deleting them, friends, family or whatnot. I want to scream at them: shut up, I wake up in the middle of the night just to make sure my eight year old is breathing. I research the latest advancements with his condition, I prepare his cream and Ketocal and beg him to eat his favorite food so he doesn't lose anymore weight. I give him 4 medications, 2 times a day and think about how cool it is that it's not more. I follow him around to make sure he doesn't run into the door handle again, I check him daily for new bruises, because he won't tell me, and I plead for him to say Mama, just one more time. I wait by the phone for the Doctor to call, and every time I leave him with someone, I worry constantly. I have had friends think I am a horrible parent for taking 3 or 4 hours here and there to myself, and really, those people are just trying to avoid having to be thinking about anyone other than themselves. Believe me, I am always with my son, even if I am not sitting next to him. It goes deeper than other Mothers, it really does and the ones that argue that point...don't have a child with Special Needs. So...shut up. Don't complain if I ask you for help...it's a REALLY BIG FREAKING DEAL when a Special Needs Mom asks anyone for help, because she doesn't believe anyone can take of that child like she can, and letting go, is like turning over your heart AND your lungs to someone else.

And I don't complain. I may say: Dang, bad day. But the words: Why me? Why him? NEVER leave my lips or show on my computer screen. I mourn things he can't do everyday, and I look at the pictures of his happier days, and sometimes I cry. I don't cry in front of anyone and I don't create drama for attention. Even though, these things he can't do and these things he is in danger of daily are palpable, and not getting the best seat in the movie theatre, or finding out the my favorite author isn't writing anymore, those things, don't even make the list of truly lamentable things. Sorry.

Yet, I look at the lives of the people that place such importance on these things and I think about how miserable they must really be. If something that has no real effect on their lives, physically, is so devastating, then how much life are they missing? If they are so immersed in something that they comment more about that thing than the people in their lives, they must be unfulfilled.

I don't admire, worship, or give lip service to people I don't personally know. Dad used to always say: They sit to shit, just like you do (be offended, go ahead, it's my Dad NOT ME). Keep it in perspective.

So I have learned to find joy in little things as much as big things. I spend my time with people that I love, not that people I wish I knew. As too many people like to say: What would Jesus do? Would he go to HP8 or Camp Spike and Wave?

Easy answer. Harry Potter...is not real.

Now, I continue to wait for the Dulcolax to work so Bug can feel better. What are you doing?

I think...I am done.

I think I have finally seen the writing on the wall and I am done being nice. I routinely go out of my way for the people in my life and they repay me by treating me like I was SUPPOSED to help them anyway so why should they say Thank You? Or return the favor?

When I say I am not feeling well, I have a 101 fever and can't sleep. I get: Wah. Boo Hoo.

Someone else in my family can say: Oh no, I think I forgot to unplug the iron and it may have scorched the ironing board cover. And they get: OMG! I hate when I do that, try cleaning it with...or wow you are so lucky you didn't burn anything, how scary.

It was reinforced in spades the last two days how little my well being means to most of the people I know. Over-reacting? Not really. I have a list of examples that I won't share because I don't want to offend anyone. But suffice to say, I am done. DONE. Don't ask me for anything, I am gonna be as selfish as I want to be, if I can. Might take me a while to learn not to put everyone else ahead of me but hey...why the hell not learn? No one else feels badly about not being there for others so why should I?

I am done with the tears. I am done being invisible unless someone needs something. I am just done.

This is NOT a cry for attention. It's a resolution. Good Bye, old Nett. I probably will miss you but not that much since I will be all about myself.

The Flowers That Stick

I wrote this as a note on Facebook a while back...i just read it again and, wow, I like it. Who knew?

My home is covered in glittery things, things that sing the alphabet, little flowers that glow in the dark and things that if they get stuck on something, and they do, would need a nuclear arsenal to remove.

My home is filled with noise, humming, spinning things, laughter, and crying over things that are important to a 5 year old, but not so much to a 40 year old.

My home is filled with errands and my car sees me more than my bed.

My home is filled with soft things, things to sit on and things to cuddle with, things to throw and things to catch.

My home is filled with the people I adore, the people I would rather spend my times with than any other people in the world, and people that make me feel loved.

My home is filled with my heart. It may be messy with things that stick, and things that get thrown, and people that can't pick up what they put down, but it is my home, and it is my family, and I love who they are and who they will be. And in my home, I am the sticky that holds it together, and the laughter that lightens the day and the person that would give up anything to cuddle for a moment with person that needs me the most.

Those flowers I don't get, are not nearly as beautiful as the flowers that stick. My daughter is wearing them on her fingernails.

This Federal Angel

Mom just called.

Dad has been in the hospital for 3 days because he has an infection from his pacemaker surgery. He was so worried about leaving his co-workers high and dry, also about being out of leave and not getting paid. He was sure that the Insurance premium would not be paid and they would be stuck with medical bills. I tried to reassure him but he wouldn't really believe me.

Mom called his boss, Bridgette (apologies if I misspell), whose own daughter has been in the Hospital recovering from surgery and she told Mom to relay to Dad not to worry.

In a few short hours, Bridgette rallied the troops and rescued my Father. She called back East and got Helen to approve a Medical Retirement for Dad possibly beginning as early as October 1st. Someone will bring Dad his paperwork and get it all finalized for him.

On top of that (which has been in the works for MONTHS) she told him not to worry about the next two weeks. She said that his co-workers have donated their time to Dad. That he will be using their leave and will receive a full paycheck.

This is possibly the most generous and amazing thing I have ever heard of. This man, who has given so much to the service of his country is now seeing the rewards of his dedication.

Dad has over 45 years in constant work for the Federal Government. He has gotten up every morning at 4:45am and gone to work. Seldom did he take any time off. He has donated selflessly to make sure that the men and women of the armed forces are taken care of. That they have the equipment they need when they need it, and that the civilian corp also have what they need to do their jobs.

I doubt Bridgette will ever know how much she has done for my Father. How she has put him at ease with a few phone calls during a time that she also was feeling the burden of supporting her own family.

So do me a favor: Do not mock Federal Employees, EVER. Because those employees that make it happen are the salt of the earth and they are the unrecognized heroes of our country. They ask for little and give everything. They do not make the 6 figure salaries of the Congressional Page that works 5 hours a day, they *earn* what they work for and they take care of their own. They are not the wasteful tyrants that you hear about in the news. They believe that what they do, makes a difference.

This is my Dad. And he has assured an honorable legacy that needs to endure. And Bridgette, has seen to that.

Thank you Bridgette, thank you from the very bottom of my heart.

Invisible

Most people do not want to see Bug. Oh, they want to see the pretty boy they do not want to see his Epilepsy. I post about his seizures and I have watched the people that know him the most slowly pulling away. I still support them, I cancel my plans and I drop what I was doing and I offer an encouraging word or two, but he gets NOTHING in return.

I post for TWO reasons: 

1. So that someone can say they have heard of this before, their child has been through it and can offer some guidance.

2. So the someone can read and know that they are not alone. That there are other people out there in a similar position and they can commiserate.

The second is VERY important.

When you have a child with a chronic condition he/she will always be treated like damaged goods by someone. It's just something that you have to get used to. You will hear about how it is somehow YOUR fault that the child has this. it will be blamed on everything but what it really is: A fluke.

People do not want to be reminded that it could be them, that they could face this at ANY TIME and so I struggled with posting about his Epilepsy. And then I came to this conclusion: Screw perfection, the world needs to be made aware of how sudden and how all encompassing Epilepsy is. So I will post, unabashedly. And if people start to treat me like we are invisible than so be it. Someone will understand and someone may be able to help and I will let them know that they are not alone. That even though other people crave and are prideful of their perfect lives, we, who do not have perfect lives are still every bit as fulfilled. And we can see outside of ourselves and find the power to help others.

And I haven't made a potholder in years.

Examination and fury.

I have been called many things in my life, some of them true, some of them not as true as others but tonight I was called haughty. A new one for me. Arrogant, I heard once in the heat of an argument, but not haughty. 

I have always been told I was approachable, understanding and down-to-earth, I have made friends for mere moments to help someone get through the tough time they were having, never to see them again but feeling like I helped.

I am opinionated but I know when to shut my mouth, usually. Tonight, I hurt a little. Not because I thought they were my friends, I knew they were not, they have been aggressive with me before when I was trying to help, but because I fear they may be right.

Do I REALLY believe it? No. But I question it. As I believe all people should when an accusation of impropriety has been leveled against them. I re-read what I wrote that so infuriated them, I read it to Glenn, I mulled it over and came to one conclusion:

They must have been drunk.

De-friended and blocked. A little sadly but I do NOT need that judgement on top of everything else I have going on at the moment. I need people that will support and not just take. So, done. And not looking back.

Bogeyman

I remember when I was afraid of the dark. I would slip into bed, surround myself with all of my stuffed animals, pull my feet up as close to my chest as I could get them (because my sisters had me convinced that something would suck my feet under the bed) and tell myself stories until I fell asleep. On the days when my sister wasn't asleep before me, we would talk through the wall. I can't recall what we would talk about but I imagine it was planning the next summertime adventure.

If I had anywhere in the house to go. I would run there. Not just because that's what children do: run everywhere. But because our Father had drilled into us to turn out the lights when we were leaving the room.  Ergo, the only lights that were on, where the ones in the room where we were. So, I ran into, and away from the dark. 

As I got older, I loved the dark. I became a creature of the night. I would stay out all night, sleep a few hours (if that) and then go to work. My parents had no problem with this AS LONG AS I fulfilled my obligations. I believe the quote was: What do I care if you are sleepwalking, as long as you are sleepwalking at work. I would go dancing for hours, met some great friends and just enjoyed the liberty of youth. 

Once I started working at Nordstrom, I started having problems with sleep. If I didn't get at least 6 hours, I would throw up. I began a Prilosec regime and my need for sleep was less an issue. Still, every so often I would be quite ill in the mornings. I was like that for almost 10 years until Bug was born. 

Having an infant meant everything to us and we went months with little sleep. We worked out a pattern that fit us well, I would feed Bug and then sleep, Glenn would bottle feed him the second time and then he would sleep, I would feed him next and then Glenn, it meant we got at least two hours of sleep between feedings. Bug was awake every hour for food. He eventually began sleeping for 3 hours and then 4 and then 7. By 4 months old we were doing better. And then at the age of 2, he digressed.

He began to fight us to go to sleep. We tried Melatonin with limited success, we tried Benadryl, also, with limited success and in our desperation, we gave him a sleeping pill and it worked. Most of the time. So sleep became our friend again for about 6 months and then he began having seizures every night.

And I became afraid of the dark again. Running from place to place always to end up cradling my boy as he had a Grand Mal seizure. Now, even with his medications helping, I still hate to sleep and yet, I love that I get to sleep more. 

Last year, when he was having 10 and 20 a night, I wasn't sleeping, I would spend the bad nights researching what could be going on in his head. Researching medications. When we put him back on the Melatonin, it made his seizures worse as did the Benadryl. Only his Lamictal gave us peace, until he adapted to it. Then it was Lamictal and Keppra, and now it is Lamictal, Keppra and Zonegran. Sigh.

I look back now and think how childish it was to be so afraid of what wasn't there in the dark and yet, here I am in the same position. It doesn't seem childish at all. Nothing real is there to harm us but it is what is not seen that is the problem. There is a bogeyman in our house and we hate him but turning on the light will not get rid of him...yet.

Journalistic Integrity: Found

At one point in time, many years, but no so long ago, I wanted to be an investigative reporter. I wanted to be a Photo Journalist. I had an aptitude for one but not the other. And in the hustle and bustle of things that could not be changed I decided that journalism was not for me after all. Why? I was unable to fulfill my commitment to my Journalism Teacher because I was very sick. She moved on and I was left to write small articles, I was left behind so instead of staying the course and working my way back into the groove, I moved on to something else. But here's the thing: I didn't really. I just stopped writing as much. I was editing things in my head, taking stock and asking questions, forming concepts and talking about it but not writing.

Until now, I had no purpose to write. All things are already being talked about and I had lost my passion for prose. Until Bug.

He makes me want to write again. He makes me investigate and search for the story, the reason, the headline. I see him, daily, just being a 7 year old boy and not thinking anything about his Epilepsy, in fact I am not sure he thinks much at all but he is happy. He knows no difference. Our lives are forever different, but his is what it has always been and I moved to share that. Motivated to bring hope to people that *do* think about their Epilepsy and are having a hard time reconciling that their life is not all about their Epilepsy. So, I write again, hopefully I write with purpose and with clarity. With no passion but fact as proof. Hopefully.

How lovely...

Thank god I have a witness because if I didn't...

Danny and I were killing time waiting for Tay to be done at ballet. There is a Walmart across the street so I thought we would pick up a few things, including birthday presents for the soon to be 5 year old girl.

We wandered the store, picked up a bunch of stuff we sort of need and sort of just thought were cool and go to the check out.

In our cart were several toys for Tay and several for Bug. His toys are mostly pre-school and baby toys because he is in this oral phase at the moment and better chew toys in the baby department. We looked at the Dog toys but they were too squeaky.

So most of the ages said: 0-12 months.

The lady checking us out, oh, let's call her Flo, asked: How are you today?

I had been having a bad day so I said:" Eh, I am just Ok, how are you?"

She said: "Oh that's lovely."

????

If I had known what this next statement would cause..I would have said it earlier.

I turned to Danny and said:

"I think he will like these."

Flo asked how old he was.

I said: "7 but he has Epilepsy and Autism and some other ism's I am sure but he's a fun kid. Likes to spin things."

Flo said:

"How lovely."

????

Actually every few seconds, while I was talking, she would alternate: 'That's lovely', "That sounds nice", "Oh how lovely"...it made NO sense whatsoever.

"Yeah" I said quizzically, "he is getting better."

Flo said: "That's nice."

I said: "Yep, just happy he doesn't play IN his diaper anymore. That was a fun time." That last statement was a test. Flo did NOT disappoint:

"That sounds like fun."

????

Danny said: "Hey Mommy I like to finger paint".

I laughed. Flo, apparently thought it was inappropriate, because she shot Danny a pursed lips look. Maybe she WAS paying attention..through her fog of happiness.

By this time she had finished checking us out and we wished her a good day.

We walked silently away toward the front door. At the SAME TIME I turned to Danny, he turned to me.

I said: "Paxil anyone?"

Danny said: "What the hell was she on? Paxil you think?".

We laughed all the way out of the store. We laughed in front of the store. We laughed in the car. I mused about calling the store manager and recommending some random drug testing. Then we wondered what it would be like to work with her. And we laughed even harder.

Bad day...over.

Until I got home and got a second degree burn on my wrist from Bug's frozen dinner. :(

Still, giggling about Flo.