Tuesday, May 12, 2020

Borrowed time.

It’s been a good day.

Of course, aren’t all days good when you’re living on borrowed time?

I’ve been having major anger issues lately. Sure, some of it might be from this stupid COVID-19 mess, but a lot of it is just me being mad at my own body. Since moving to Pennsylvania nearly a year ago, I have had labs drawn a few times. I don’t even know what prompted my doctor to check whatever mysterious level in my blood it is that indicates I might have an issue with gluten, but check it she did. The first time this level was checked, my blood sugar was also checked and came back crazy high. It made zero sense, because at the time I had been on a diabetic diet for a little over a year. The doctor, of course, defended the lab stating that “this level is rarely incorrect.”

Well, it was wrong. Way, WAY wrong.

So when she told me I “might have celiac disease” I didn’t believe it and asked for the labs to be drawn again. I had no symptoms of celiac (and believe me, I looked them up) so I figured the lab screwed up again.

The results were the same the second time. Long story short, I got referred to a specialist in Pittsburgh who decided I need to have some scope procedure done where they shove a camera down my throat and look at my small intestines. This is apparently the only way to get a definitive diagnosis.

Enter COVID-19.

That procedure has been postponed indefinitely. In the meantime, another set of labs were drawn and still indicate celiac disease. Like it or not, for now I have to live my life on the assumption that I have it and need to be on a gluten-free diet for the rest of my life.

I’ve been pretty angry about it for a few weeks now because it doesn’t affect only me. There are two of us in this house and we are not going to make different meals for each of us, so Mike now has to eat gluten free as well. It sucks.

Today was a good day though. I’m lucky that Mike has embraced this whole lifestyle change. He knows how much I love baking, so he’s made sure I have a plethora of gluten-free ingredients. For the first time since before Christmas, I got the stand mixer out today and baked. It was glorious! I made oatmeal raisin cookies that are not only free of the evil gluten, but also mostly sugar free, and I made flourless peanut butter cookies.

Life is good. 

Thinking about all of this while I was baking got me thinking about my life and the different ailments I have dealt with over the last 20 years. It was July 2000 when I was diagnosed with Graves’ Disease, an autoimmune disorder that affects the thyroid causing hyperthyroidism. After a decade of that flaring up and being treated with medication, I finally had my thyroid removed in 2010. Since then, other than having to take a thyroid pill every day, life has been pretty simple.

Then in 2018 I was told that I was very close to being diagnosed with type 2 diabetes. That prompted a major lifestyle change! My doctor at the time didn’t think I could change my eating and exercise habits enough to avoid the diagnosis. In one year, I did just that though. I lost 25+ pounds and changed my eating habits. I was officially no longer on the brink of diabetes.

Life was good again! 

Now this. I’ve always loved the idea that from the day we are born, we are dying. Every day should be lived and appreciated to its full extent. Losing our son to cancer at such a young age also taught us that lesson. 

But damn…sometimes I feel like my body is hellbent on getting me to death faster than I want to go! Never with anything that is guaranteed to kill me. Just this little thorn-in-my-side stuff. 

Here’s where the borrowed time comes in.

I am incredibly fortunate to live in a time when there is knowledge of these disorders and treatment options available. I may not like having to give up some foods, but at least I know that is how to deal with it. If I had been born 100 years ago, I might have had any (or all) of these ailments and not known that I had them at all! Who knows if they would have killed me or not. When my Graves’ Disease flared up, I would sometimes have a resting heart rate of about 110 beats per minute and only be able to get 2-3 hours of sleep per night and that would go on for days until the medicine the doctors prescribed kicked in and got it under control. Without medication, who knows how long my body could have withstood that. 

So yeah…maybe this time that I have now is not time I was meant to have. Instead of wasting time being angry over this new twist in my life, I’m choosing to consider it my next great adventure! Like all adventures, there will be struggles…kind of like taking a beautiful hike in the mountains and getting bit by mosquitoes and falling into a patch of poison ivy. It’s all part of the whole experience, right?

If my body is determined to keep throwing these curveballs at me, it better be prepared for a battle because I love a good challenge!

Bring on the gluten-free cookies!

Sunday, March 22, 2020

Feeling lost.

The world is in quarantine. In many places it is a crime to break quarantine. People are out of work. Businesses are suffering. Many small businesses are likely to fold if this quarantine goes on for very long.
I am watching the government with hope. This is a situation unlike any we’ve faced before and I want to believe that they are doing their best to figure out what is right for the people of our country. At the same time, I see so many who cannot hide their hope that this government fails because it is not the government of their choosing. I see our elected officials using this virus to get their own agendas passed and it sickens me. What sickens me more is the glee that others find in those same actions.
This is one of those odd times where I’m glad that Keeghan didn’t live to see this world. I worry for Mackenzie - what kind of world does she have to look forward to? She’s young. She should have hope for the future. All young people should have hope for the future. Instead, this society seems hell-bent on imploding into a black hole of despair and anger.
I like to read dystopian books. I never thought I’d be living in one.
I have to wonder what it will be like in a year. Will this all be over, with everyone talking about it like some great success that we all made it through together. I certainly hope that is how we are able to look back on it. Or will it just be the fuel for more anger and hatred (something we already have too much of). Worse, will we move on from this and forget about it, learning nothing, like we seem to have done with the events of 9/11?
Sometimes it is so hard to live in this world not knowing any of the answers. Why is it so hard for us humans to work together?
The end of this story...or this chapter of this story...is not known yet. I feel like we can each affect it. The problem is that we all have different ideas of who the hero is in the story and...well, I think that the heroes should be us, not those we are expecting to fix everything. Can we do that?

Wednesday, March 18, 2020

Dear Parents in COVID-19 Quarantine

Dear Parents,

By now, if you weren't already a stay-at-home parent, you probably are, quarantined from the COVID-19 pandemic currently sweeping the world. You might feel like your life has gone straight to hell and that you're never going to make it through this. Your kids might be getting on your very last nerve. Wine has become your best friend and that thing you start looking forward to as soon as your feet hit the floor in the morning.

Sound about right?

Well, get over it. What you're dealing with is difficult, for sure, but I'm here to tell you there is an entire population of parents in this country who are viewing your "horrible plight" and rolling their eyes in disgust. I am one of those parents.

We are the cancer parents. People who have dealt in the past, or are dealing currently, with having a child with cancer. Children whose immune systems are completely shot due to chemotherapy and/or radiation. Parents who know that something as innocent as touching a door knob and then scratching their nose is enough to cause a fever and a week in the hospital on IV antibiotics, praying the entire time that it doesn't get worse and that the antibiotics do what they're supposed to.

My 10-year-old son, Keeghan, was diagnosed with a malignant brain tumor in 2006. After weeks of intense chemotherapy and 32 whole-brain radiation treatments, all in a span of 6 weeks, his immune system was nonexistent. We were a military family, however, and had to move from Texas to Washington, DC. Two cars, three adults, and a 12-year-old sister managed to get Keeghan moved without ever spiking that dreaded fever. We were an army of Germ Warriors, always ready with hand sanitizer and a hand to lend to open doors so that he stayed free of deadly - yes, DEADLY - germs.

I emphasize that word for a reason. The first funeral I ever attended for a child - and I have been to a few, sadly - was for a 7-year-old little boy. It was not the cancer he was fighting that killed him. No. It was the sepsis he contracted when his immune system had nothing left and he was somehow exposed to some germ...probably something innocuous that you or I could fight off easily. His little body was so depleted from chemotherapy though that he could not fight it off.

Seven-year-olds should not die.

Because of cancer, I had to homeschool both of my children. I began homeschooling when they were in 5th and 7th grades. To say that it was difficult is laughable. I had no idea what I was doing. I figured it out though. Here are some lessons I learned along the way:

- I did not have to actively "educate" them from 8am to 3pm - the hours that they were normally in school. They did not receive seven hours of one-on-one attention from their teachers at school; therefore, why should I think they needed that much from me? We spent as much time as was needed on the lesson. If they finished a reading assignment in 30 minutes when I had an hour blocked off for it, that was ok.

- some subjects can be taught without a textbook, under a blanket while cuddling on the couch. Oftentimes with a cat in the cuddle somewhere. That's ok, too.

- flexibility is key. Because Keeghan was going through chemo, some days were better than others. If he wasn't feeling up to math, we didn't do math that day. Go with the flow of the child.

- making activities fun creates wonderful memories that you will never forget. Trying to keep things regimented creates horrible memories that also will not be forgotten. Trust me when I say that it is better to have the wonderful memories years from now than it is to have the horrible ones.

You might think what you are dealing with is the worst thing you've ever experienced. Cancer parents would beg to differ. My son died in 2008. We just passed what would have been his 24th birthday. My daughter is now 26 and on her own. I am watching from the sidelines as so many of you "suffer" through this quarantine with your children and I am jealous. I am so incredibly jealous of this gift of time home with your children that you have been given. You have the opportunity, right now, to create lifelong memories with these incredible little humans you created. Don't pass it up. Don't look at it as some kind of punishment. This virus spreading around the world is a horrible thing. There are positives to be found in it though if you only take the time to see them.

Take advantage. If for no other reason, take advantage of this time for me, so that I can experience it vicariously.


Friday, March 13, 2020

COVID-19 and politics should not mix

I’m so exhausted.

No, I do not have coronavirus.

I am exhausted from listening to the many different arguments surrounding this current COVID-19 pandemic.

I gave my husband a ride to work today. On the ride home, I listened to a local morning show on the radio. Callers were arguing for and against how our government is dealing with this outbreak. Should we have halted flights from Europe? Did we ban travel from China quickly enough? Was this virus created by the Democrats to interfere with the election this year? Was this virus created by the Republicans to interfere with the election this year? Everyone has an argument to support their stance on the subject and they all believe themselves to be absolutely correct. No news there. Isn’t that the beauty of being American? We can think for ourselves and come to our own conclusions and make decisions for ourselves based on those conclusions, whether they are based in true fact or not.

Where the whole thing went south for me was when the host of the radio show got irritated with a caller who was defending the president’s decision to halt travel from the EU for 30 days. He said, “Yeah, yeah, yeah...I see now. You’re one of those Trumper Fan Boys.” The caller was (understandably) offended by that comment and said so. The host then said, “I don’t care if you’re offended. It’s true. I can hear it in your voice. As far as you’re concerned, Trump can do no wrong. You’re part of his cult.”

The caller was not saying anything that could really be construed as wild or far-fetched; only that he thought it was good that travel from countries more heavily affected by the virus is being halted for a while in order to let the virus run its course. The radio host, however, went on the attack. I honestly wanted to call in, because in my opinion the radio show host was being over-the-top dramatic by taking what this caller said and turning it into childish name-calling rather than having an intelligent discussion.

It brought to mind a conversation I had with someone yesterday. I respect this person a great deal, but we are on opposite sides politically. She sees this president as a toxin. I see many of the prominent Democrats in Congress as a far worse and widespread toxin. But here’s the thing that I pointed out to her: she can voice her opinion without fear of being attacked, verbally and physically. I cannot.

My husband jokes about wanting to buy himself a MAGA hat. It isn’t that he thinks they look good or are a wise fashion choice. He just doesn’t like the fact that everyone on the left can scream and yell and cry and stomp their feet and protest and, generally, force their political opinions and feelings and beliefs down the throats of everyone and we’re all supposed to just take it, but he can’t wear something that shows who he supports without fear of physical attack.

What is wrong with that picture?

Of course, because I love my husband and would prefer he not be physically attacked or shoot anyone, I have asked that he not wear a MAGA hat or anything else that shows he supports President Trump. Instead, we just plan to vote.

Back to COVID-19 though. This virus is no joke, to be sure. Neither was H1N1, Ebola, SARS or any of the others we have faced in the past. Do I believe there should be widespread panic and a run on toilet paper? No, I don’t. Of course, why should you believe me? I’m not a doctor. I’m just a logical person. If you take proper precautions - wash your hands, cover your cough/sneeze, stay home if you are having cold or flu symptoms, don’t go into large crowds if you don’t have to - then you are probably safe. Personally, I would not be traveling right now, but that’s just me.

On a larger level, I think closing our borders is a great idea. If there is a possibility that we will have more cases needing hospital beds than we have hospital beds for, why would we be foolish enough to let more people into the country? I care about humanity, but I’ll be honest - the freedoms that we enjoy as Americans should not be AS free or AS readily available to non-Americans in times like these. I should not have to worry that, should I need a hospital bed, one is not available because it is already taken by someone here illegally. That is not saying that I think an illegal alien should not be treated if they are already in the country and become sick. Of course I think all people should be treated, but if we can stop more illegal people from entering the country and possibly taking up beds in hospitals that (I feel) American citizens should have priority for, then yes, I think we should close our borders.

It is absolutely ridiculous in a time like this that people are still playing partisan political games. If you are one of those doing it, just stop. Seriously. Unless you have completely lost your ability to be human, stop. That is not who we should be.

Now, back to your regular programming.