Are you that one?

Said "Are you the dizzy one? You should go to my naturopath"

As I have said before, someone with good intentions trying to help out. BUT if you don't even know the person's name, don't give them advice.

Good thing I was "the dizzy one" and not a woman who was drunk, stumbling around.

Should have said: are you (find out my name)? If you want to try supplemental medicine I have a good naturopath." Mostly, just learn someone's freaking name before you advise them.

Aspartame (insert frightening music)

Oh, so many here....

"Do you have seizures because of aspartame?"

"Your seizures would stop if you didn't have aspartame?"

"Aren't you afraid you're going to get cancer?"

Holy hell. At first I would tell people that I didn't have much artificial sweetener before my seizures started, but after awhile I just gave up.  When you have other conditions that may result in complications you aren't so worried about the "aspartame poisoning".  Worry more about kidney failure, neuropathy, blindness, alzheimers, heart disease, the fun keeps coming.

Random person giving me advice about this- I cannot eat or drink anything except water without thinking about what it will do to my blood sugar. I'll go with the artificial sweetener over glucose spikes.

Oh, and if you feel inclined to give someone nutritional advice.... unless you know their entire medical history, don't do it.

Doctors aren't immune

Believe it or not, doctors are not immune to filter malfunction. 

" Have you noticed an increase in seizures with increase in adipose tissue?"

*After my surgery I was referred by my neurologist to a psychiatrist practicing at the same hospital.  I went to this almost doctor aka resident for the increased depression I was having.  After he talked with me for a bit and I told him about my discouragement with seizures after surgery he gave me this gem.  

No, genius, my seizures haven't changed because I'm a fatty.  I came to see you for psychological help, not anything else. I did not hesitate to tell cute little resident that I have a neuro who treats my epilepsy, and that he should address the problems his patients come to him with. I didn't hesitate to go give his attending the same speech.

Even if you are a god, I mean doctor- watch your filter

Worrier

Since I was a child I have been a worrier. Unable to sleep (in the winter)  as an 8 yo worrying about taking swimming lessons. Worrying as a seventh grade student that I didn't get an A in every class.  Surprisingly (note sarcasm), after having years of seizures in the part of the brain that controls emotion and having part of that part of my brain taken out I had increased anxiety and depression.

Said: "You know, faith is the opposite of fear"

*A friend asked me if I had noticed difference after my surgery. I told her about increased anxiety and depression- she asked details and then gave me this. Yes, B#&$%, I am sure it has nothing to do with 20 years of seizures and the recent brain surgery- faith is the problem. I believe in the power of faith, but I don't believe in people diagnosing others as having a lack of faith.

Should have said: I hope that you find something that helps.

Under the knife

During my second pregnancy my seizure activity went up significantly- around 10 a day.  We (my doctors, my husband, and I) were thinking my brain would go back to normal after baby came.

That didn't happen and brain surgery was the only thing I hadn't tried that may help. After about one year of pre-op testing to make sure it was a safe option I decided to go under the knife.

"Are you sure you want to do that?"

"How do you know nothing will go wrong?"

"They are taking part of your brain out?? Doesn't that scare you??"

Thanks, guys.  I hadn't thought of any of those things. Yes, I'm sure I want to do it. If you had my brain you would too.  I don't know nothing will go wrong. Yep, it scares me, but thank you for reinforcing that.

It's not like in the movies

Said this: "Is it going to be like in Steel Magnolias?"

*A friend of mine when I was pregnant with my first son. Yep, I got pregnant knowing that I would go into kidney failure and die. NO!

Should have said: What is it like to be pregnant with your medical conditions?

I'll go ahead and brag- I rock. I had two babies with pregnancies full of complicated blood sugars, increased seizures, and changing thyroid levels. How did I do it? I told you, I worked my butt off and I rock. 

Just Buy a Car

I have driven a car off and on, depending on how often my seizures occur. During college I didn't drive.

Said this: "Why don't you just get a job and buy a car. Then you could drive yourself"

*After I asked a classmate for a ride to a clinical site that a bus route didn't access she gave me this advice.  Thanks genius, I never would have thought of that! Oh wait....  I told her that I could easily buy a car,  but I wouldn't be able to drive it safely or legally.

Should have said something like this: I noticed you don't ever drive. Why is that?

After this assumption I started telling people why I was asking for rides, or why I did anything else unusual. This opens up a whole other can of worms- the unwanted advice.

Brain Storms

Since having kids who ask what is going on with me, I have referred to my seizures as brain storms.  Again, my kids know to go get my neighbor if I am confused after a brain storm, they know "mommy can't drive because of her brain storms", and they know my memory is crap.

They also know that I went to college, practiced as a nurse, play the piano, and fix dinner (most important of all).

People are a lot more comfortable talking about diabetes, because they THINK they know all about it. When it comes to epilepsy, generally there isn't as much input.

One thing to remember- holy cow, if you don't know about someone's condition or why they are or aren't doing something- ASK.  Don't state what you think is the truth, when in fact you are just guessing.  That's annoying

Let's learn

Said: "Did you get diabetes after you ate too much sugar?"

*Not a certain time in my life- anyone out there with diabetes has answered this a lot!

Should have said: How did you get diabetes?


I can't help it. After working as a nurse in patient teaching jobs I can't help but teach people about body malfunction (PC illness), even if they don't have it.

No, I did not get diabetes after I ate a lot of sugar (as was thought by a lot of people around me). Type 1 diabetes is an autoimmune disease with genetics and environment playing a part. As I explained to my 6 year old who asked how I got diabetes, my white blood cells got confused and thought my pancreas (and thyroid) were foreign and needed to be taken care of.  My 6 yo understands- the public should, too.

People with (and some without) Type 1 diabetes have certain autoantibodies and depending on their luck something in their environment plays a part in them getting diabetes. This could be a virus, other physical stress, who knows what else.

Type 2 diabetes has a very strong genetic link.  It does have more to do with your diet and health, and there can be preventative measures. Even if you take the best care of your body your genetics may still win.

Gestational diabetes is also strongly genetic. In some instances it leads to Type 1 or Type 2 later on in life.

Type 1 or Type 2, don't let people get away with telling you it's because you ate too much sugar!! Corner them, and let them into reality so they don't say something dumb to other people.


Read and learn

Teenagers...think before you talk

My teen years included some funny/interesting assumptions 


"Why were you playing your gameboy in the stall?"

*Set the stage- this peer heard my loud glucose meter making noises as I tested BG in the bathroom. Nope, not playing games, squeezing blood.



"What is that? Is that a rape detector?"

*I had plenty of questions from my peers after I got an insulin pump. This guess went in my record book!



"Don't you think it's so dumb when people in high school have pagers?"

*Those "cool"  boys talking in the corner, making sure I could overhear so I knew how dumb my "pager" is. Yes, boys, I do think is it dumb. I do quite like my insulin pump, though. Don't take your pancreas for granted, boys.



"You are so lucky you get to eat a snack during class"

*Yes, indeed.  I'm lucky I get to give multiple daily injections, do 5 fingersticks a day, and be on a meal plan, too! You should be jealous!


No should haves here. Teenagers haven't fully developed a filter yet, and they are often dumb

Watch your filter

The start of my teen years was not only filled with Middle School and teen awkwardness. I was also greeted with Type 1 diabetes, epilepsy, and Hashimoto hypothyroid.

I had/still have a wonderful,supportive family, and great doctors and nurses. As anyone with any chronic illness knows, I also had and still have people all around giving me their well intended, but quite ignorant advice and comments.

I have come to the point where I just have to laugh at people's lack of a filter in their comments, and try to educate anyone I can about my conditions. If you tell me or ask me something about diabetes or epilepsy get ready for an earful from me. If you tell me to go to your naturopath or try different food to cure me get ready for me to laugh at your ignorance and give you the stink eye.  These things that are said do not offend me- they are just stupid and I reserve the right to make fun!

Enjoy the ridiculous comments and advice, and always watch your filter.