I observed last week that my life seems to be zipping along at a ridiculous rate, and I now have quite a bit to look back on.  What this made me think about was that in many ways, I’ve managed a variety of difficult situations, or chronic problems, over the years.  What I didn’t know starting out was how ongoing the problems would be.

There was always something that I was waiting for the resolution of.  Always something that wasn’t done.  First it was waiting to have my first child.  Then I had to recover from the experience of having my first child.  Then once I had adjusted to motherhood, I had to figure out what happened to me during that first labor and birth.  Once I figured that out I was ready to have another baby.  Then I had to contend with over two years of secondary infertility.

In all those months, things really weren’t normal and they weren’t wrapped up.

I did finally become pregnant and I did have my daughter, at home, avoiding all the problems of the first time.

The transition to parenting two was still a bit difficult, but after the first few months things were normal for a while.  Then she started waking up at night.  Once we got past that, we had diagnoses for my older child, who then needed some therapies.

By the time I had my third child, I figured things would sort out once I dropped the volunteering.  But, my third child slept much less at night than the first two had and we spent months trying to get that challenge sorted out so I could sleep again.

You can see where this is going.

I can count only a couple stretches of time where things were normal, where I wasn’t dealing with some challenge in life with either my children, their health and well-being, or my health.  So I’ve been living it for over twenty-two years now, and that was it.  That was my normal.

And, this year, we just finished a couple of months of what I guess I’d call sort of normal? it was summer, so there was travel, and family, and college orientation, and things to fit in that we didn’t do during the year, and recovering from family events, but there weren’t any major crises besides watching my husband deal with Boston area traffic, so I guess that was normal.  Maybe?

But, then school started with a bang this fall, and the one going to college locally has required more support than expected, and things have really picked up at work for my  husband, so…

Maybe you can take something from this, especially if you are at the beginning of the journey of parenthood.  I pray you get periods of time where it stays the same or there are no major problems to solve.

But it will be normal if you don’t.

Traveling all the way to California and back from our home in Kentucky was an adventure in many ways.  I expected to find a different world in the realm of climate, landscape and culture.  I did not expect a difference in restrooms.

It’s just different out there.

It doesn’t seem to be a priority to have working toilets, even though if I’ve got my history right, the west has been settled since the mid-1800s, depending on what region you visit.  Perhaps settled is too strong a word.  Maybe pioneers were just passing through.  Maybe they still are, and that’s why restrooms don’t seem to be that much of a priority.

Some would say that is exactly the issue in Nevada.  There is an interstate that passes through, and you have several options if you want to cross the state east to west, but only a few.  We chose the interstate and the northern route because a) we did not want to end up that far south once we got to California anyway and b) we did not prefer to experience Las Vegas.

As soon as we crossed into Nevada, the first time we stopped, we noticed that it was questionable how long you would have to wait to use a bathroom.  The gas station in Elko had a couple of stalls–but only one was functional and there were several women in line for it.  Understandable I suppose, since there are only so many ways to get across the state, that we would all be gathered near the only working toilet.

Somewhere on the stretch between Reno and Winnemucca, we stopped at a little gas station at an exit with nothing else.  There were humorous cards and touristy gifts in the building, which appeared to be either under construction or in the process of being abandoned.  The women’s restroom was at the very back of a long room with boxes and empty shelves in it.

At least there was a women’s restroom.  You have to admire Nevadans.  They get along just fine with pretty basic amenities.

Every gas station stop definitely had a mini-casino of some sort.  This was a dark, cool and comfortably air-conditioned room with about five slot machines, other games, and some video games.  I didn’t go in, but from the door I could feel the blast of cold air and see that the room was clean, cool, and definitely functioning.  I believe the biggest one was at same gas station in Elko which only possessed one working toilet.  Here we can clearly see the priorities.

Our RV park in Reno was nice.  It had trees and a great view.  The only problem for us was that we had a pop-up, and they put us toward the back of the park near the beautiful view of the majestic Truckee river.  The hike back to the main building for restrooms was pretty long at 2 a.m.  And the thing was that while the building contained multiple restroom stalls, the ones in the office portion of the building were not available overnight when the office was closed.  There was one, count it, one bathroom available overnight–for the entire park.  And it included a shower.  What that meant is that if someone else decided to take a long shower right before you needed a toilet, you were just…SOL.  Call me crazy, but I thought the purpose of having restrooms at an RV park would be that you could use them when needed.

Of course I’m not a hardy Nevadan.

When we got to California, the RV park at Sacramento was pretty nice–there was some shade and a short walk to the restrooms.  There was also a really lovely pond just down the way that was covered with white birds who sailed beautifully along every morning.  When I first saw them I was so sleepy I thought they were snow or whipped cream.  But the main door of the women’s didn’t fully shut so the keypad for entry was pointless.  This didn’t really bother me, until I was taking a shower stark naked, as that’s what one usually does, and I heard the sound of a man’s voice carrying on a conversation with his girlfriend over by the sinks.  The two of them were pretty surprised when I came out of my stall after getting dressed and exclaimed, “Surprise!”

The bathroom at Yosemite National Park took the prize for California.  Disclaimer: I love the National Park Service as it paid for my entire life up to the age of 21.  I am not criticizing the Park Service personally in any way.  It’s clear that a cartload of people love Yosemite and want to camp there, and, once you’ve visited, you too will understand why.  What you will also understand is why it’s way too complicated to get the equipment up the winding roads into the mountains in order to update the restrooms.

So anyway, they women’s restroom was relatively old.  One of the toilets was routinely overflowing so not very practical for use, and the other had a tendency to get clogged.  And, there as well, we had men stepping in to use our side, which I didn’t understand until my husband explained that the urinal on the other side was clogged–and that it stayed that way the whole time we were there.  Oh, now I smell, I mean I see!

My conclusion?  Salt Lake City is an oasis–and I mean that literally.

To get there, you travel through western Wyoming and Utah for many hours when traveling westward, and through Nevada for many hours traveling east. The scenery on either side is amazing–stark, beautiful, rocky.  I love how elemental the landscape is.  But I can say that by the time you reach the RV park in Salt Lake City, on either the eastward or the westward route, you are pretty happy.   In Salt Lake City, bless them, they have really nice restrooms featuring both hot and cold running water, four stalls, three showers–and soap–and paper towels!  And did I mention clean?

Little did we know on leaving home how much we would miss this attention to detail.  Our road trip was worth it though, because we have now begun the process of becoming as tough as those hardy Nevadans.

 

I’d like to thank Dave Barry for making this blog possible.  As he likes to say, I am not making any of this up.

This blog was recently published on The Mighty website.

 

The main cause of the current medical response to my autoimmune disease, which is not exactly the fault of the medical professionals who are working with me, is that there is still so much we don’t know. There are factors at play in the bodies of many people with autoimmune disease that haven’t been discovered yet.

What I would like, aside from feeling better, is an acknowledgment of this fact.

When you have been in the treatment process long enough, sometimes that is all you can expect, and all you want. I have received this kind of treatment at times, and my wish is that every patient would receive this kind of care. When I find this kind of respect, I stay with that doctor.

However, most of the time, the medical response that I’ve received over the past twenty years is some variation of this: “Your lab work is fine. Therefore, you are fine.” There is rarely awareness that lab values don’t tell the whole story.

The medical response to my autoimmune disease and the symptoms that go along with it often depends on where I am in my relationship with the current doctor. At first, the physician is attentive, involved and above all, confident that she can fix my problem and get me feeling better.

As the months or years go by, she is still concerned, but what happens eventually? Once the professional has tried every treatment she knows to fix the problem, that’s when my problem changes. Then I don’t have the problem, because she has fixed it for me. Now, if I’m depressed, fatigued, anxious and not sleeping well, it’s because I am a mother of three children, and we all know that having children just makes you tired.

The medical response has included five or six special diets and several medication and supplement protocols intended to eliminate the root causes of my autoimmune disease. I don’t deny that there are systems in my body which are not working optimally; in fact I have no doubt of it. Unfortunately, what has been tried has not been enough to resolve the problem.

What is hard is working in a months-long process of fully implementing the diet, the supplements, the tests, the lifestyle choices and the medications, only to find that the side effects of the process cause me to feel worse than before.  Once I get off the regimen, I am right back where I started. Thankfully, most of the time, although not all of the time, the side effects go away once I stop the protocol or regimen or diet.  I am out the money I spent, of course.

So, the medical response to my autoimmune disease, while well-intentioned and logically backed, does not actually fully fix my problem.

I know that the treatments and regimens I have tried have helped many other people. I agree with the research my doctor and I review when we make choices about the next thing to try. I know that eating Paleo is good for you and most people feel great off grains. I don’t, even when I’m off grains and sugars for months. There must be other factors at play that are causing the treatments I’ve tried to not work. But no doctor or lab tests have ever been able to pin them down.

It’s discouraging.

The net effect of the usual response adds to the struggle instead of taking away from it, because if the doctor has done all he can, there must be something wrong with me. If the diet didn’t help me, I must not have tried hard enough. I should have kept adding more supplements. Perhaps I was not fully compliant with the diet. Maybe I just needed to relax.

In this journey, respectful treatment goes a long way. I saw an ophthalmologist twice, after seeing my regular optometrist for repeated eye redness that started after I had a bad winter virus, the kind that causes headaches, fever and light sensitivity. Between the two of them we had tried antibacterial eye drops, antiviral eye drops, steroid drops, tea tree wipes and plain eye wipes. One of them said that eyelash mites were the problem; the other said they weren’t.

I went to the ophthalmologist to follow up. When it came down to it, he told me he could refer me to another specialist, but that in his opinion, the redness was an autoimmune inflammation that could not be fixed. He did not know why. And he did not have any other ideas.

That is what I needed to know: not other ideas that weren’t really related, not excuses for why the treatments weren’t effective, not fairy tales about how if I just tried one more prescription, it would be fixed.

There’s not much satisfaction in not getting better. But there is a sort of joy that comes from being treated with honesty and respect.

So I stole the title from an article in the August 11 issue of The Economist.  You probably know people who send their kids to multiple summer camps.  There are apparently still camps that include nature and campfires, but around the world, those who have enough money are sending their children to better camps.  According to the article, the end goal in a lot of different cases is getting into college.  And apparently getting into the camps themselves is also competitive.  Canada/USA Mathcamp admits just 15% of applicants.  Nine year olds in London can attend a technology summer camp for only 1,700 US dollars.  Nine.  Years. Old.

Then there’s the kids in South Korea who are practicing debate by discussing whether plastic surgery should be banned, in the English language, of course.  This sounds like a fun way to spend the summer–if your parents’ ultimate goal is again, the best colleges.  Did I mention these are eight and nine-year olds?

What’s that all about?

Even twenty years ago it wasn’t like this.  Fifty years ago it certainly wasn’t.

I’m not saying there’s nothing good to be gained from experiences at niche camps.  I’m not saying we can necessarily go backwards in time.

But people, I just don’t understand what this rat race is about.  Or, if you prefer the term The Economist uses, what this arms race is about.

Why isn’t anyone hearing common sense or the research that says that time for free, pretend play and time for outdoor play and time to just be is absolutely necessary for human development?

Why is it necessary to make sure your children are better than the rest?  In this world, can you even have a life in which you’re content?  How did this happen?

Are there just too many of us?

 

https://www.thisisinsider.com/under-the-radar-islands-everyone-should-visit-in-their-lifetime-2018-8

Check out this article!  Wow!  cool!  Did you know that you should visit one hundred islands before you die?

It’s a super bucket list idea that we can all afford!

Come on everyone; join the race to run toward the prize of seeing your life as less than enough.