Life Is A Gift, Not An Obligation – An Update

There is always a silver lining to a situation, you just have to look for it. Change your perspective and things get easier. Here is more of my story. 

What a few years it’s been! I realize that I haven’t given an update on my health in a while, so I’ll do that in a minute, but let’s start with what we’ve all been through. 

Between the covid lockdowns, wiping our groceries with sanitizing wipes, figuring out who could be vaccinated at what time, and managing all of the depression and anxiety that came with it, it’s been a time. 

I took a liking to the saying, “We are all in the same storm, but in different ships.” We were not all in the same boat and we couldn’t begin to understand the challenges of someone else – no matter how difficult our personal challenges may have been. They were different boats entirely. 

But here we are. It’s not completely over, but we’ve made it to a new type of normal, always reaching for the calm normalcy that we loved before. Do you remember the major stresses we dealt with in 2015? Yeah, I barely do either.

Acknowledge The Trauma

One of the things that is toughest about being where we are now is the expectation to be back to normal. As if we haven’t just experienced significant trauma and that everything is okay. 

It’s not okay. That doesn’t mean that things aren’t great and that you haven’t found happiness, love, and prosperity.

It means that there is a part of you that dealt with a world-changing event. And that if you aren’t quite the same person you were before, it’s time to show yourself some grace. 

I am incredibly hard on myself. I have very high expectations and if I don’t take care of my loved ones the way I expect, have the patience of the gods, and complete my work and life tasks to the best of my ability, I get down on myself. 

I know I’m not alone in this and I know I’ll never change. But what I’ve tried to do is to give myself a break. 

I still expect myself to have the patience of the gods (particularly with my children), but I work to find time during the day to decompress. Whether that means playing a video game during lunch or watching terrible reality shows that I love, I know that I can’t be who I want to be without some self-love. 

Stacked on top of years and years of life stress, loss, frustration, and anxiety is now a pandemic. And whether you think the word “trauma” applies to you or not, I would ask you to consider it.

Trauma can be very subjective and whether you were the most or least capable person in this type of situation, there was no way to be prepared for this level of unseen. But you lived it and you are still here. So try to give yourself some grace. 

Your Attitude Is Everything

I am a huge believer in attitude. If you’re a frequent reader of this site, you know that I am always looking for the silver lining. I don’t care how tough things are, there is one there to find. There is love, there is shelter, there is protection, there is something. 

It is all in your perspective and perspective is a choice. There will always be things to lament in this life, but if you can look to your appreciation for something – anything – it softens every blow. 

I am not one to share things in daily life about my medical challenges. My friends and family will tell you that if I am ever open to discussing anything, it is a very rare occurrence. I will give an update as needed, but that’s about it. 

It’s not that I am afraid or embarrassed about divulging the information. It is that my medical issues are the least interesting thing about me, as I like to say.

They’re boring and I’m not a huge fan of unsolicited advice. Plus, if you look at me with overwhelming sympathy or pity, I will probably never tell you again! 

I’d always rather discuss movies or television shows or books or history. Teach me something that I don’t know or let me excitedly tell you about things I’ve researched. There is so much to be excited about that talking about aches and pains, I just can’t do it for very long. 

But I will discuss things here. And I promise you, if you are reading this, you will now know more than most of my friends and family! 

Everyone Should Have A Nissin Fundoplication

Okay, not everyone. That’s a little over the top, BUT I mostly mean it. If you have serious GERD (Gastroesophageal reflux disease) and you have a doctor who has recommended this surgery to you, my results have been life-changing. I want to be the poster child for the surgery. 

I have various digestive disorders (GERD, IBS, and esophageal spasms to name a few), but my GERD was by far the toughest to manage. By the time I had my surgery, food and liquid would go into my stomach and return on a whim. My throat was burned and it was less than fun. 

I had significant testing done and it was determined that I was a candidate for the Nissin. Nissin Fundoplication is where they wrap part of your stomach around your esophagus in order to cinch it so that nothing can flow back up.  

Surgery attempt #1 didn’t work out because my liver was too large (although no testing indicated that it would be), but surgery attempt #2 was the ticket. 

I am now 4 years out from that surgery and I cannot believe the change. I am now able to burp enough so that I am not uncomfortable (not being able to burp is a side effect of the cinching) and all of my food stays where it should be. 

The surgical benefits should last 20 years or longer, so I’m a very happy camper. I am also happy to answer any questions about my experience if this is ever something you’re considering. I didn’t know anyone who had had it, but now you do!

New Medication For Vitiligo?

During the summer of 2022, the FDA approved a new medication for Vitiligo repigmentation. It is a cream that you rub onto the affected areas and is supposed to have good results for many. 

As I’ve mentioned in the past, I was diagnosed with Vitiligo when I was 19 years old. I am Caucasian, so the affected areas aren’t super obvious during the winter, but as soon as spring hits, I often get questions about what happened to my skin. 

I don’t mind the Vitiligo at this point. The most noticeable areas are my hands and elbows, but I am aware of all the other areas on my face, feet, ankles, and thighs. 

That said, the only area that has a psychological effect on me is my face. I wouldn’t even be looking for treatment if I wasn’t concerned about the small patches that I see there. 

For the record, I stay covered and out of the sun most of the time (unless walking to the car, etc.), but you know your body. And when it changes outside of your control, it’s extremely unnerving. 

I recently filled a prescription for the new medication Opzelura, but I haven’t used it yet. I am working up to trying it and I will give an update after 24 weeks with my results. 

I decided that I will try it on one of my elbows first (I am not concerned with how alluring my elbows are) before I move to my face (not really concerned about how alluring my face is either, but you know).

My Vitiligo is one of two areas that I have a very tough time addressing (the other is my hair), so I’m taking the time I need to get there psychologically. 

At the moment, my Vitiligo is only mildly active, so not much changes from year to year, unlike the way things were at the beginning. 

But there are things that change in other areas, so here are two of them. 

I Have Special Toes

Who knew? I have had an issue with my toes for somewhere around 5 years. I get sores on the tips of my toes and they last for up to two weeks.

They’re very painful and although I’ve looked for answers from my bevy of doctors, the only thing I ever came away with was to wear socks because maybe my feet were cold. My symptoms didn’t seem to fit a diagnosis (as is the way with my body), so we moved on to something else. 

In March 2020, I seemed to have hurt my second toe (henceforth to be known as Antoenia). I had stubbed her on a chair a week before, she ballooned up and got all purple and tender. It was strange that there was so much delay in the reaction, but it was 2020 and we were in quarantine. 

I sent a photo to my doctor who told me that she was probably fractured and to splint her with the toe next to her. About 3 weeks later, she got better and I went on with life. 

The next year, the exact same thing happened. I had not stubbed any toes, but Antoenia was purple and swollen. I was sent to a podiatry specialist who took about a minute with me before saying that I had a rare form of Raynaud’s Syndrome. 

My toes don’t get white, they turn purple and develop sores. Antoenia is the queen of my toes in this respect, and since rare symptoms seem to be my forte, this strange version of a Raynaud’s diagnosis finally fit. 

Two years later, I’ve learned how to keep my feet protected while not overheating myself (I’m chronically warm) and I’m proud to say that I haven’t had a single sore during this mild Chicago winter! Go Antoenia!

I’ve Never Touched A Cat

To the best of my recollection, I have never had the pleasure of petting a cat. I have always had a serious cat allergy, but it has gotten worse as I’ve aged. 

I will be sitting in a restaurant, someone who has a cat at home will walk by me, and my face will start itching. If they are sitting at the table next to me, the insides of my ears will swell. 

This is something that I’m used to and while not fun, it is what it is. The worst part is that kittens look so soft and fluffy, I’d love to snuggle one to my face! But alas, it’s not meant to be. 

The most concerning part about my allergy is that it is anaphylactic as well. If the cat dander is allergic enough to me (cats are all different) or I am in a house or store with a cat, my lungs begin to fill up with junk and close. I have an inhaler and I mostly avoid being in that situation, so it’s usually not a problem. 

This past winter I had two episodes like that where there was no cat around. There had never been another trigger, so I was sent to an allergist who had some breathing tests run. 

While I was there, I was asked if I had asthma. I don’t and have never had any issues with my breathing other than my allergy.

Well, it turns out I have allergy-induced asthma. My lungs react like those of an asthmatic when they are triggered by an allergen. 

So while I won’t be doing anything different, it’s always good to understand what is happening, and I definitely feel like certain things make more sense. 

As Long As It’s Livable

As I’ve said many times before, my goal with my health is that everything is livable. I am not looking for cures for the circus that I live in because my stuff is mostly annoying, not life-threatening. And that being the case, cures aren’t really the priority of science. 

Plus, I’d much rather they put that research money towards curing cancer, ALS, and Parkinson’s than worrying about my toes. 

And I’m doing great. I have a beautiful and supportive family, a fantastic husband, and amazing kids who I was able to carry myself. Their births are the major gifts that this body gave me and I’m happy to keep my end of the bargain by taking care of it as well. 

Just looking at what I’ve written feels like a lot, but please know that we all have our challenges. There is so much to learn and experience in this life, don’t let anything stop you. 

It is within our power to flip the script and carry the weight of our issues. It’s not always fun, but hopefully, much of the time, everything around it is. 

-Written February 18, 2023