Winning the battle against my fears

December 22, 2018

I used to travel a lot. I flew to Florida twice a year to visit my grandparents, I drove to New York twice a year to visit my other grandparents. I drove to Maine many times a year to spend a weekend or a week in my family’s vacation home there. Sometimes I flew to another state to visit friends. On top of all of that, I would take one week long bigger trip to someplace I hadn’t been before. Yes, I knew how to squeeze every last hour out of my vacation days! (There were many exhausting long weekends!)

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My last trip overseas: London

That was my life before. Before my chronic illnesses became quite so disabling. I can no longer drive the 4 hours to New York. I have not been on a plane in 8 years. Eight years! I used to fly 3-4 times every year and now…. I feel stuck at home.

Travel opens up our eyes to new experiences and unfamiliar cultures. Without that, my world has been feeling very small. I first went overseas in college and I immediately got the travel bug. I have been to a handful of countries, with tons more that I want to see. There are also so many places I want to see right here in the U.S. But that requires flying.

I was never scared to fly before, but now I am. I’m not scared of terrorists or of crashing. I’m scared of triggering a flare-up of my health issues. I’m scared of feeling sick while trapped in the air. And it’s holding me back.

The first years of my self-imposed ban flying were absolutely legitimate. Flying would have been horrible for me. Even car trips to New York when someone else drove were hard. I barely saw my grandfather in New York in the final years of his life, and that was brutal. We spoke on the phone often, but still.

But I realized recently that it’s no longer my health that’s stopping me as much as my anxiety. Sure, there are health issues too, but I think that I probably could have managed some travel in the last year or so. It’s time.

So over the summer I promised myself that this fall I would go someplace I haven’t been. But I’m not ready to fly. If I can’t fly and I can’t drive far, that means taking a train. Trains are pretty good for me, and I will write a separate post about my experience with Amtrak’s accommodations for folks with disabilities. Still, they’re limiting. I chose Philadelphia. I’ve heard good things, I’ve never seen the city, and it’s a reasonable train ride.

Not long after this decision I began seeing a therapist, and she encouraged me to try flying as well. I want to start with a very short flight, so Washington D.C. seems reasonable. I flew there once many years ago (the times I drove) and it’s super fast. I figured I would go to Philly first, then DC later. If those went well, I could build up, and maybe finally manage to visit friends on the west coast, see the Grand Canyon, and more! Maybe I could even visit my friend in England! But first things first: a train ride to Philly.

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Last week I saw the Liberty Bell!

This was HARD! Buying the train tickets took a lot of emotional strength. It was difficult to find an AirBnb in the neighborhood I wanted that was on the first floor. I thought through every aspect of the trip many times: what medications to bring, how to handle food, how to manage my limited energy. I was ready. I had planned. But I knew that things could fall apart at any time without warning. Should I really do this? Maybe it was all a big mistake!

Less than a week before the trip I had a bad night. My adrenals crashed, which happens sometimes, and it’s the worst of my symptoms. I was nauseated, fatigued, weak. I was shaking, crying, and scared. And I panicked.

I started to think, not for the first time but definitely more strongly, that I should cancel the trip. That was the last day that I could still get a reimbursement on almost everything. I could have a quiet week at home. Things had been so hectic. I was planning for an event that week. Yes, I had planned a full 2 days between the event and the trip so that I could rest and pack. That was plenty of time. The event wouldn’t be that tiring, it just took planning. Still, it was overwhelming. I couldn’t manage. I could cancel the trip and stay home and get shit done around the apartment. That sounded really nice!

Thankfully, I had a therapy appointment the next day and she talked me down. I cried the entire time. I was crying before we even started talking. I was a mess of fear and anxiety. I had put a ton of pressure on myself, because if this trip was a failure, I knew I’d be too scared to try travelling again. But I WANTED to travel. And if I didn’t try, I’d never know.

After an hour of talking, I felt better. Not great, but better. I would do this. But I was still nervous.

The next day, I felt confident again. I could do this! What changed? One thing: I felt better physically. My anxiety gets much worse when I feel sick. That makes sense, since my anxiety is about being ill.

For the next few days I slowly got shit done. I wrapped up things at home. I told myself I didn’t need to do it all. I went to the event. I had many days of low energy and I let myself stay home and rest. I cut more things off my to do list. I kept it to the bare minimum. Now, a full week after I got home from the trip, I still haven’t done some of those things, and that’s ok! 

The day came. I had packed the day before. I didn’t need to leave until noon, something I planned very intentionally. And I did it. I got on that train.

I will probably tell you about the trip another time, but the short version is that it was great! I didn’t do nearly as much as I would have liked, even given my health limitations. One day I was fatigued and couldn’t go out much. One day I was in so much pain I could barely walk. Still, I did it. And somehow, miraculously, I didn’t have any adrenal crashes! Almost as amazing (and probably related,) I spent the last 2 days with friends who ended up getting very sick, and I never caught their bug. Incredible!

I came home feeling like it was a success because I traveled someplace new and my health managed ok. That makes me feel much better about getting on a plane to DC. Not great – I’m still nervous, and when the time comes I might panic again – but at least now it feels doable. And while my grandparents are sadly no longer alive, I have several cousins and close friends in New York, and in a few months I will take a train down there to visit them.

Yesterday I went to therapy and she eagerly asked how my trip was. I was happy to tell her about my success. But honestly, even just going was a huge win for me, no matter how it turned out. I was scared and anxious but I went anyway. I’m proud of that.

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But did it help?

September 25, 2018

I go to so many medical appointments, sometimes I just take for granted that I have to go. But last week, after I wrote about having 13 appointments in just one month, I also mentioned it to a friend, and she asked me something that shocked me: were they helping?

It shocked me because I hadn’t thought to ask this myself! You would think that of course I’d be evaluating each appointment to see if it was worthwhile, but at some point, I just stopped doing that. I have gotten all too used to “follow up” appointments where the doctor reviews my symptoms, nods, and then tells me to come back in 4-6 months without suggesting any changes to what I’m doing. And often this is fine, because I feel like I’m on a decent course. Or because I know the treatments come with bad side effects that I want to avoid. Still, it’s worth taking a step back every now and then to ask,

Is this working?

Is this worthwhile?

I’m glad to say that in the case of this hectic September, the answer is a resounding, YES! The hand therapy has been making a huge difference. My sleep doctor suggested one small change that has had a big positive effect. My naturopath offered me some hopefully changes. I haven’t seen any changes from my new therapist, but it’s early, and there’s nothing negative, so I’ll give it some time.

This means that what I’m doing is working and it’s worth it. At least for now.

Still, 13 appointments in one month means very little time to relax, to deal with household chores, or to have fun with friends. And it’s really getting to me. I’m looking forward to one day soon actually being able to do those things again!

In the meantime, take a step back and ask yourself, are all of those appointments helping? I hope the answer is yes but if it’s not, it might be time to ask yourself how to change that answer. (Obviously I’m not a medical professional and I’m not suggesting you stop seeing your doctors even if you’re not seeing positive results right now. Use your own good judgement!)


The stress of dealing with stress

March 12, 2018

When the doctor told me I needed to avoid stress because of my autoimmune disease, I laughed to myself. If it was that easy, wouldn’t everyone do it?

But over the years I learned how to stress out less. I’m still Type A. I’m still controlling, But I managed it. I get stressed out in more reasonable ways. It doesn’t feel as extreme as it used to, or last very long. I almost never lose sleep.

Until this month.

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The last few weeks have been really rough. I have been struggling a lot. And finally yesterday, I just felt so frustrated by it all. I wasn’t sure what to do. I called a friend who also has chronic illness, because I felt stuck. I wanted to stay home and rest and be alone. But I had already done that several times in the last week and it didn’t help. So was it fair to cancel plans with a new friend?

She helped me realize that I did need to stay home and take care of myself. And that while spending a day watching tv and crocheting will help me when I’m physically exhausted, it’s not enough for my current anxiety and stress. Emotional issues require a different approach.

She suggested a journaling exercise: write for 10 minutes without stopping. Make it a stream-of-consciousness writing exercise, and do it for 4 days. The key is not to write about *what* is causing me stress but to write about *how* it makes me feel. That’s harder. I’m not good at that.

But the minute we hung up the phone, I set my timing and got started.

Within a few minutes I was crying. It was wonderful! You see, my problem is that I have gotten so good at compartmentalizing my feelings when I need to, that I’m doing it even when I shouldn’t. Like right now. For the past week I have felt like I needed to cry, but I couldn’t. I knew it would help me feel better, but I couldn’t do it. I tried cutting onions. I shed some tears, but it wasn’t a real cry. I watched a sad movie. Again, I shed tears, but it wasn’t the sobfest that I really needed. It wasn’t enough.

But the journaling exercise got me to cry. Then I got in the shower and cried more. Seriously cried. It didn’t last long, but I had tears streaming down my face and snot running out of my nose and it felt good. Cleansing.

I need to cry more. Maybe today’s journaling will help. Maybe not. But it’s worth a try.

We’re taught not to cry. Crying is bad. Not crying shows strength. I am proud of the fact that I almost never cry. I feel embarrassed when I do cry. But why? It’s a natural expression of emotions. What’s wrong with that?

My health issues also bring up a lot of negative feelings. I usually deal with them by setting them aside while they’re raw, then dealing with them a bit later when they aren’t quite as strong. That works for me.

The problem is that it stopped working. At least in this case. A few weeks ago my girlfriend and I broke up. We weren’t together long, which was part of the problem: it made me feel like I didn’t have the right to be upset. But I was. This relationship was different. I thought it would last a long time. So did she. The breakup itself isn’t the point of the story, though; the point is that I didn’t mourn. We broke up at night, and I called my mom and cried. The next day I had a medical appointment in the morning. On the drive there I wanted to cry but I stopped myself, because I didn’t want to be an emotional wreck during the appointment. I didn’t want to be distracted. By the time I got home, I was too tired to deal with my emotions. The next day I had another appointment. Again, in the car I almost cried, but I stopped myself.

And then that was it. I never really cried. I just went on with my life. I didn’t talk about it much with friends. What was the point? The breakup was no one’s fault. I wasn’t mad at her. I missed her, but talking wouldn’t help, right? The thing is, pushing aside my feelings just meant that I felt fine at the time, and now it’s caught up with me. Now I’m stressed out and anxious.

But it took yesterday for me to figure that out. I thought I was stressed about other things. I knew my response to them was way out of proportion, though. I wasn’t sleeping well. I was anxious a lot. I was overwhelmed. I was yelling at people. What was wrong with me?

What was wrong was that I wasn’t dealing with things. I was pushing them aside.

And as if that wasn’t enough, I have autoimmune disease. Thankfully, I didn’t get sick! But it was definitely a strain on my adrenals, and I had to increase the dose of adrenal supplement that I was trying to decrease. There has definitely been a physical toll.

I have a pretty good handle, all things considered, on managing my physical symptoms. I have had decades to figure that out. But when it comes to emotions, I have to unlearn years of bad habits. I have to learn how to stop hiding from my feelings and to let myself feel them. I have to ignore the daily messaging from society that says crying is bad, being sad is bad. It’s ok to not be the happy, cheerful poster-lady of chronic illness. It’s ok to be sad, stressed, anxious, or whatever else. I just have to stop hiding from it.

So that’s my lesson for this week. It’s taken me far too long to learn it. Before long I’m sure I’ll be learning some other lesson. But for now I am focusing on this one. Because I’m still sad, and I’m still learning.

Now it’s time to go do my stream-of-consciousness journaling again. Hopefully I’ll cry.


Wanting and despising pity

February 17, 2018

I’ve been off my feet for the last week, more or less. Some days I could barely hobble around my apartment, even with crutches or a cane. Other days I could walk around the apartment fine, but putting on shoes was incredibly painful. This doesn’t happen often, but it’s happened many times over the last 13 years.

The difference is that this time, there are new people in my life who aren’t familiar with it.

More than once, a neighbor, a friend, and my new girlfriend all noticed me using crutches or limping, and they offered sympathy. Some were clearly pitying me as well.

Most days I despise pity. Instead of pity, I wish people would offer sympathy. And I wish they would do things to help. Hold open a door. Don’t come near me when they’re sick. Call their legislators and ask them to vote against the new bill that guts the Americans with Disabilities Act (ADA). (Seriously, call them! The bill is described here and you can find your senator’s contact info here.) Those things are helpful. But not pity. Pity sucks, and it’s dehumanizing. It means they’re seeing me as a set of symptoms instead of as a whole person.

And let’s be honest, we are taught by society that we shouldn’t like pity. We should be strong and resilient, blah blah blah.

But some days, that’s just how I feel. Some days, life sucks and I want more than sympathy, I want pity! Like when my feet hurt so badly I can barely hobble to the bathroom. Like when the pain is so bad, I can’t even wear socks. Like when I have to cancel plans so that I can stay home and feel like crap. Sympathy is good. Usually that’s enough. But every now and then, when I’m feeling especially sorry for myself, I also want pity from others.

Now here’s the thing: I talk to people about being in pain. Because I’m in pain. Every day. It’s a part of my life. I don’t dwell on it, and I only complain on the worse days, but I mention it a lot. And sometimes, people offer pity, even though that’s not at all what I’m looking for. And I hate it.

Then again, sometimes I bring it up because I DO want some sort of acknowledgement. I hate to admit it, but it’s true. Sometimes, I want people to know I’m in pain, to feel bad about it, to offer me some sympathy, and maybe to offer help with something I struggle with.

It’s a hard line to toe. I want to be able to say that I never want to mention it, I want it to be ignored, I want to be treated like everyone else. I want to say that, but it’s not true. Because the truth is, I’m human. And sometimes we humans want a little sympathy and support. Some days we even want pity!

Like I said before, society tells us we shouldn’t want pity. We should be strong and inspirational. Others should be able to point to us and say, “Look how amazing she is! If she can do what she does despite her health problems, I have no reason to complain.” Talk about dehumanizing! I’m a real person. I’m a whole person. I laugh and cry, feel optimistic and pessimistic, go out with friends and stay home feeling sick, do laundry and errands and cooking and other mundane chores. I’m more than a set of symptoms. I have feelings.

And yes, sometimes those feelings lead me to wanting pity.

I’m not proud of that, but I’m not going to be ashamed of it anymore, either.

I don’t live in the land of pity. I know that would not be healthy for me. But if a few days here and there I feel this way, what’s so wrong with that? I can’t compel someone to pity me. More than that, I know I’d be pissed if a bunch of people started doing it. But if for a few days I’d like my mother or a friend to pity me a bit, to offer condolences for what I’m dealing with, then so be it!

I won’t ask for pity. And most days I will still despise it. But if every now and then I want it, that’s ok.

Is it just me? Do you ever feel this way? Do you feel guilty for wanting pity? How do you handle it? Please share in the comments!


Struggling to endure

December 6, 2017

Last week was a really good week. And that made Sunday so much harder to deal with.

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First I took a long walk around beautiful Walden Pond (and took this photo), stopping a bunch of times to admire the view. It was unseasonably warm, and sitting down to watch the water was lovely. I was able to clear my head and figure some things out.

I made plans. I worked through ideas that had been weighing on me. I made some tough decisions about my finances and my health. By the end, I was super excited to get started! I walked about 2 miles total and felt ok afterwards. I rested that evening, but that was it.

A few days later my mom came to visit. After a lovely lunch, we took a walk in a wooded area. The sign said it was a 1 mile loop, and that seemed ok to us. Well, I don’t know what went wrong, but the path never looped. We eventually made it back to the car, but we walked about 4 miles. I was surprised I felt so good afterwards. Tired, but good. Hmm. Maybe this was a new trend?

The next day I hung out with friends and had a wonderful time. I got home later than I expected and was too tired to go out to a friend’s house that night like I had planned. Too bad. I really wanted to go, but I knew that resting was the right move.

It had been such a fabulous week. I exercised, got fresh air, got clear on a new mindset, spent time with friends.

And then it all changed. I spent all day Sunday feeling run down. I never left my apartment. I cancelled all of my plans for the day. This sucks, but it isn’t unheard of. And I did a lot this week, so I couldn’t complain, right? I trudged through the day, mostly reading a novel and wishing I could do more.

That would have been ok. It would have been disappointing but totally fine. If only that was it.

Sunday night I got really nauseated. Sometimes I know what causes the nausea, but usually I don’t. I tried Pepto Bismol, which usually helps, but this time it didn’t. I tried medical marijuana, which usually helps, but this time it didn’t. The nausea was really bad. My pulse was racing (114 while I was still sitting) and I felt bad all over.

Over the years, nausea has because an emotional trigger for me. I don’t know why it has, when the pain hasn’t, but it just has. So as usual, I started thinking about how horrible this is, and when will it end, and why won’t it ever go away. Yes, I have these episodes a lot less often now that I’m off gluten, corn, and a couple others triggers.

But why does it still happen? Was it something I ate? Something I did? A delayed reaction to the 4 mile walk 2 days before? How will I handle another 50+ years of this? Why did I bother to make plans? Obviously it was stupid to think I could ever get off of benefits and support myself. I should just stop trying. Then I started thinking about how it might be easier to just kill myself and end this. Except that would be very upsetting to my family and friends. I couldn’t do that to them.

I started having those thoughts a few years ago. I know it’s temporary. I’m not too worried, because I only have them when I’m curled in a ball on the floor, too nauseated to do more than stagger to the toilet occasionally. I have never gotten to the point of really wanting to kill myself but even if I did, I wouldn’t be able to until the worst of it had passed, and I never think about wanting to die except when I’m in the worst of it.

So all these thoughts were floating around in my head, and then something strange happened: I started to cry. And cry. And cry. Before I knew it, I was sobbing. Big, ugly sobs. I couldn’t stop crying. I thought I should call someone. (If you’re new to this blog, I live alone.) I ran through a mental list of awesome people in my life, and finally decided to call a friend who lives in my apartment complex. I asked him to come right over and he did. I didn’t explain, but he must have heard it in my voice, because he showed up with his dog, saying the dog was for therapy.

The dog, of course, immediately started to nuzzle me and lick me. He’s that kind of dog. Very sweet. But what I really needed was a hug and some understanding, and I got that.

We sat on the floor while I cried and talked. I always sit on the floor during these spells – for some reason, it just works for me. I cried myself out and we just sat there for a while. Then for some reason, I started crying again. Still, having someone there was extremely comforting.

Eventually I wore myself out. My friend and his dog left (he mentioned leaving the dog, but I was too weak to care for him.) I fell asleep on the couch to an old movie that I often watch when I don’t feel well. I woke up less than an hour later and found the nausea had subsided enough that I could drink a little water. Lots of diarrhea and lots of crying can really dehydrate a person. Then I stumbled to bed. I slept fitfully, but got through the night.

Monday was a bust. I cancelled plans and ate almost nothing. But it didn’t get that bad again. Tuesday was better, and I even left the apartment. And today is better still (though it’s after noon and I’m still in my pajamas, so it’s not fantastic – I try to get dressed by noon every day when I can.)

So why am I sharing this? I’m sharing it for a few reasons. For one, amongst my friends with chronic illness, I’m often seen as the strong one. Strangers online (both through this anonymous blog and under my real name) say that I’m a role model. I have my shit together. I’ve got a good handle on all of this. I work my butt off to take care of my health, research new treatments, find the best doctors and practitioners. That’s all true. But that doesn’t mean I don’t have really bad times, too. I think we all need to remember that the people who seem to be great probably have bad times behind closed doors where we can’t see them. It’s important not to idealize people, but to see them as they are.

It’s a reminder that we all have our struggles. We struggle, and then hopefully we have better days, too. We don’t need to assume someone is perfect in order to have them as a role model.

I’m not perfect. I’m still continuing to fight every day for the best health possible. I want to believe that one day those episodes will end. Until then, I will just keep on trying. Because what else can I do?


The power of a hug

October 14, 2017

Somehow, I did it. Despite the crappy weather that makes me feel horrible, I managed to not only survive the short weekend with my friends, but to enjoy it!

Ok, it wasn’t all great. I did feel like shit part of the time. But having friends there made it easier to handle in some ways.

Of course, having friends there also made it harder to handle. They went on walks when I couldn’t, and while someone was always hanging out at the house with me, I know they limited themselves to do it. I wanted to be carefree and have fun, but life isn’t always that way.

Not that the others were carefree. One was frustrated with a spouse, another had job worries, etc. You know, life. It’s easy to forget about that stuff when you live alone and can’t work, but health does not guarantee an easy, stress-free life.

So there we were on Saturday night, having a lovely dinner, when it hit me. Symptoms. Fuck.

I went to lay down on the couch. It was an open space. No one could see me because the back of the couch blocked their view from the dining room table, but they knew I was there, and I would sometimes speak up to join in the conversation as they cleared the dishes and put away food. I was nauseated and in pain, not that they knew what my symptoms were. They just went about their evening, because they know that’s what I prefer. No fuss.

And then it got worse. Resting on the couch wasn’t enough. I found myself breathing hard, face pressed to a pillow, willing myself to feel better. I wanted to have fun with my friends. I didn’t want them to know what was going on.

It’s lousy that we have this stigma in our society. These are my closest friends, but I didn’t want to tell them what was going on because I didn’t want to sound whiny, or like I was trying to make a big deal out of nothing.

How ridiculous. How common. How sadly natural.

And then suddenly, as if she knew, one friend came over, leaned over the back of the couch, and asked earnestly if she could do anything for me. I said no, while at the same time, wishing I could ask for a hug. She’s not the huggy type, and I felt ridiculous. Still, her asking was like a hug in a way, and it suddenly brought tears to my eyes.

I never cry when I feel bad like this. It wasn’t that bad, on my own scale of suckitude, after all. But having someone care to ask made me emotional. I’m not used to that. Usually when I feel horrible like I did that night, I’m at home. Alone. With no one around to even be aware that something is wrong, much less to offer help.

Then another friend came over and simply gave me a hug. And when I let go to pull back, she held on. She kept hugging. She hugged and hugged. And it felt amazing.

The next day I pulled her aside to tell her how much that hug helped. But in the moment, I just felt it and enjoyed it.

Amazingly, I started feeling better right after that. Well enough to at least get up for some more medical cannabis. That helped some more. And then, suddenly (though not really suddenly at all) I was able to get up and move around. Ok, my knee still had shooting pains, so I wasn’t walking well. I had to sit with my leg up for the rest of the night. But the nausea went away. The pain because bearable. And my heart felt happy.

Because for once, friends were there to offer help and give me hugs. And that made all the difference.

 


Painful weather, like it or not

October 5, 2017

It’s October in New England, but you wouldn’t know it if you didn’t look at a calendar.

Every summer I count down until the third weekend in September. That’s when I know the weather will have finally shifted for good, and I’ll be feeling less pain, less fatigue, and less nausea. It’s truly a magical time.

But not this year.

This year we had cooler weather in August, and I was grateful for that, but I also knew it wouldn’t last. September was up and down. But surely October would be my time, right? Not so much.

When you have chronic illness, nothing is simple, and the unpredictable symptoms, flares, and other issues can make life hard to plan. Still, we do our best. For me, that means making more plans in the fall and winter, when I know I will feel better.

That’s why, even though a “simple” weekend away with my best girlfriends is incredibly hard, I felt I could do it if it was in the fall. My friends are understanding, and were perfectly happy to avoid planning anything in September, just in case. They get it. Every time we’ve had cooler, less humid weather, I get text messages and emails from friends saying, “This is your kind of weather! I hope you’re feeling up to enjoy it.” And I love that they understand.

So we planned for “safe” October. Who could have known? This isn’t our typical cool, crisp, wonderful New England autumn.

Thankfully the temperatures are cool enough, though way too warm for this time of year (upper 70s?!? Are you fucking kidding me?!?) My problem is the dew point. It’s supposed to get close to 70 this weekend! Even healthy people find that uncomfortable and for me, it will be near torture. But what can I do? The house we rented doesn’t have air conditioning – after all, none of us thought we’d need it. Higher on our list was finding a house with a working fire place. Last year we did this trip later in October and it snowed. We had a lovely time sitting by a roaring fire, and wanted to repeat that experience. If only.

I am in pain already, and it’s only beginning. Well yes, I’m always in pain, but this is worse, and I know it’s from the weather. My toes are swollen and painful. My knee is swollen and so painful that it’s hard to walk. My neck hurts. Everything is just wrong.

But I won’t stay home. I have been looking forward to this trip for a year. It is my one chance to do this. I will NOT give it up!

I will bring the medications that I can. I will be careful how I eat. And I will block out a lot of extra recovery time when I return. Still, I know this is going to be really rough. I will be in pain, nauseated, and fatigued. Thankfully, I will be surrounding by wonderful women, women I have known most of my life, the only non-relatives who knew me before any of my symptoms began, women who have always been supportive. And maybe most importantly, women who have always made me laugh, even at the worst of times.

So wish me luck. Because I want to be able to enjoy this weekend as much as possible. If only Mother Nature would cooperate.


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