Just Breathe

Posted on Sunday, 10th June 2018 11:07 AM EDT

This photo sums up how I’ve felt recently. Exhausted, beaten down, feeling despair, depressive, highly emotional, and generally not well physically and emotionally.

I am under the care of a great endocrinologist, but until my Grave’s disease is under control, it has taken a toll. It affects my ability to work effectively. Now that I work in Manhattan part of the week and commute a little further into New Jersey for work, the stress on my psyche and body has been taking a toll.

The work itself isn’t stressful. It’s a commute to New York City. It’s two and a half hours from my door to the front door of the office building in lower Manhattan. Two trains (NJT and PATH) and one ferry. With my body hustling the whole time. Push my way past the other human cattle to maybe get a seat. If not, I'm standing for the entire 45 minutes express train ride to Newark Penn Station to catch the PATH. Exit NJT and hustle squeeze through the turnstile to catch the PATH to Exchange Place. The PATH Train is the worst. I never get a seat. I stand there packed in like a sardine with some sick asshole coughing on my neck. I feel like taking a shower from the filth of humanity all over me. I get to work, and my back is in pain. It’s an open plan seating space so I can’t put my feet up and I can’t escape to my car to close my eyes for 15 minutes.

Grave’s disease is playing havoc with emotions as well. I can go from laughing to anxious and sadness (sometimes despair) all within a few hours. I have little control over this. It just happens, and once it’s done, I feel emotionally drained.

I sleep but don't feel rested. I haven't had a restful night of sleep in over a month.

I am slower than I used to be. I don’t have the energy for activities that I normally enjoy — hiking and photography. Even family events like birthday parties and BBQ in the backyard are not enjoyable.

I finally broke down, crying while getting ready to drive to work on Friday. Bhavna took me to the E.R. where a battery of blood test revealed that due to interactions between some of the medications I was taken — most likely triggered by stress — I had early-stage hypertension. My blood pressure was high and trending higher. I was put on an I.V. drip, given a Percocet for the pain, monitored for several hours and sent home with strict instructions to discontinue my medication until I could see my primary physician and endocrinologist.

I must admit I was scared. And my poor wife sat next to me the whole time stressing out.

I am feeling better today. But not great. Not 100%. Not my usual self. I’ve lost control of my body. Perhaps that’s another stress point. With Type 1 diabetes, with testing and diet, I feel I have some control. With Grave’s, I have no way to test if things are improving or worsening. I have to do a blood test every six to eight weeks in a lab and wait 48 hours for the results. It’s not ideal. I’ve also had more years of practice managing my Type 1 diabetes.

I discussed buying a blood pressure monitor with Bhavna or at least taking a trip to CVS to test my blood pressure at least once a week.

It’s Sunday, and I am already dreading going back to work on Monday.

In the meantime, I am doing what I can — breathing in — breathing out. It’s all the control I have.

9 thoughts on “Just Breathe”

  1. In 1966, I was born in the former British Overseas Territory of Saint Vincent and the Grenadines. Saint. Vincent and the Grenadines became an independent nation from the United Kingdon on 27th October 1979 at which point I became a citizen for the first time in my life.My father was, a banker, and following his career path, we moved around between the islands. During that time, I lived in a few other British Caribbean islands, including Saint Lucia and Barbados, where my baby brother was born. We were able to travel and live between island countries because of their membership in the [Commonwealth of Nations](Commonwealth of Nations).In the late 70s and early '80s, during my teenage years, I lived in Antigua and Barbuda. In the mid-80s, my family moved again to St. Vincent, where I finished high school and completed my O-levels and A-levels. We also lived for a few months on Saint Kitts and Nevis. From all the moving around, I experienced a different West Indian culture on each island, much of which influences who I am today. I broadly consider myself, West Indian with no particular allegiance to any island.However, when Antigua and Barbuda was granted independence from the UK on 1 November 1981, I participated in independence day ceremonies and obtained the privilege to apply for citizenship of that nation.My family emigrated to the USA in 1986, so I could attend college. I became a citizen of the United States of American in 1992.I’m an information security professional, Apple geek, web developer, and avid photographer. This weblog is where I share my incoherent and random thoughts and rants about technology, photography, coffee, diabetes, and life.I love drinking craft ale and freshly brewed coffee. I buy fresh beans every few days from a local organic fair trade retailer and brew at home. I grind the beans myself, and brewing using either a French Press or Chemex pour over with an Able Kone filter. I don’t drink Starbucks.There are two excellent craft ale breweries within 15-20 minutes in local traffic of my home. Between the Troon Brewing and Flounder Brewing, I am privileged to some highly-rated New England style IPA, American Pale ales, and porters. A little further out is Conclave Brewing, which makes super delicious and The Referend Bier Blendery, which produces spontaneously fermented ales in the Belgian tradition. I don’t drink Budweiser, and I rarely buy retail.WorkMy first ten years of my career was as research and development and web application development. I coded up backend solutions for various financial services and pharmaceutical companies. I mostly used Linux, Apache, MySQL, Perl, and PHP. The next ten were spent information security doing vulnerability assessments, log management, security awareness, security architecture, compliance, and advisory for Bristol-Myers Squibb. Since 2013, I have worked independently at Monkey Hill, LLC, a consultancy I started in 2013 after my role at Squibb was eliminated. My current work is in information security architecture.ComputersThe journey from Commodore VIC-20/Commodore 64 (1981÷1985) to DOS PC (1986) to Microsoft Windows PC (1990) to UNIX/SunOS/Solaris (1992) to Linux (1994) to Apple Macintosh (2005) took twenty-four years. I bought my first Mac, a Mac mini, in 2005, and fell in love with OS X, a Unix with a world-class GUI. Soon after buying that first Mac, I bought a MacBook, then an iPad Touch, then an iMac. Later the iPad was released in 2010, and I had to have one that same week. Then I bought my first iPhone (2012) and then an Apple TV.The iPad is my go-to computer, but I use my iMac heavily for photo editing. I’m an app junky, and you can find many iOS and OS app reviews on this blog.I also do exciting projects with the Raspberry Pi. It’s the smallest and cheapest Linux server I have ever owned.Programming LanguagesI started with Commodore BASIC in 1981, learned Pascal during a college course in 1986, and taught myself awk/sed/bash (1992) and Perl (1997), followed by PHP (2001) and JavaScript (2002). I've taken Java and Objective C courses but didn't use either language, and I have not written code professionally since 2013.Science FictionAlthough that’s not reflected in the content in this blog, I love science fiction, especially cyberpunk, and Japanese animation and superhero graphic novels and dystopian futures and the name of the website, Island in the Net, is taken from a book, Islands in the Net, written in 1988 by a science fiction author, Bruce Sterling. It is a story of data pirates, mercenaries, nanotechnology, weaponry, and post-millennial voodoo. It represents a future where people can use the Internet to topple governments, change lives, and make history.I read too few books these days.PhotographyAs with the majority of photographers my age, I began with a 35mm film camera (1988). But in 2006 I switched to digital. The digital revolution has made photography more accessible.I’m an avid photographer, and if the weather suits me, I spend my free time outside increasing my knowledge of landscape and nature photography. I prefer natural light, but I’m comfortable shooting anything that interests me - street, long exposure, architecture, wildlife. I take photos regularly both for my self and for others. I do almost all of my editing and exporting from my iMac. As far as gear goes, I alternate between two cameras:
    iPhone 11 Pro

    Fujifilm X-T2.
    Most of my images are shot with the Fujifilm XF16-55mmF2.8 R LM WR lens.With my iPhone, I enjoy a kind of casual photography, snapping things and sharing them with my friends and family, and playing around with Adobe Lightroom Mobile.Auto-immune diseasesIn 2006, I was diagnosed with Type 1 (LADA) diabetes, an autoimmune type of diabetes. I’m learning to live with it. I have a Medtronic 670G insulin pump and GuardianLink CGMS to help me manage my diabetes. I occasionally post articles about my diabetes tech.In 2018, I was diagnosed with Graves' thyroid disease and Grave’s eye disease, an autoimmune form of hyperthyroidism. It was a challenge to live with it, so at the end of 2018, I had a thyroidectomy. Graves disease continued to affect my eyes and a year after the thyroidectomy, I had orbital decompression surgery.HistoryI remember attending a presentation on open-source software by Richard Stallman. I remember getting my first computer, a Commodore VIC20. I remember learning Commodore (Microsoft) BASIC and writing my first video game. I remember when I upgraded to the Commodore 64 and floppy storage. I remember getting my first IBM compatible DOS PC, an Epson with one floppy disk, and a green CRT monitor. I remember buying and installing a 2400 baud modem so that I could dial into the bulletin board system (BBS). I remember using WordPerfect to write all my term papers. I remember learning Pascal and writing my first text editor.

  2. ?The year 2019 is almost over. Yay! I am so excited to start something new. Like the previous year, 2019 was full of health challenges that affected my work, my hobbies, and my mental health.The last two years have been challenging. In 2018 I was diagnosed with Graves Disease. The year had me battling with thyroid hormones playing ping pong with my mind and body. My endocrinologists, I had two, put me on various medications, none of which seemed to work. My autoimmune system raged on attacking my thyroid causing it to pump out hormones which cause anxiety, panic attacks, sadness, exhilaration, weight lost, etc. I had lost 30 pounds by the time of my surgery later that year.I was dealing with this all while starting with a new client on Wall Street, New York City. It was tough going. I broke down in tears one day, sitting on a Manhattan sidewalk, unable to move, the hormones had left me unable to move. I waited until I was able to move, speaking with my wife who was desperate to help but who could not as she was home in Princeton. Two days later I was in the emergency room under observation for several hours. Fun times!My healthcare team determined that the best course of action was a thyroidectomy. At the end of 2018, a surgeon slit my throat and removed my thyroid. The surgery was a success but now I could look forward to the life of pill-popping Synthroid. Yay!Recovery from that surgery was progressing nicely but in 2019 when it rained, it led to torrential flooding. My immune system moved on from my thyroid to my eyes. The attack had started earlier in 2018, but we could only deal with one problem at a time. The Graves Eye Disease worsened in 2019 leading to proptosis, a fancy word for, my eyes were bugging out of my head, Quasimodo style, which is not at all like Gangnam style.The doctors tried treatment with medication but the situation worsened and in April of this year, just a week before my father died, I was treated with radiation and high dose steroids. For six weeks, my attentive, loving wife, drove 90 minutes each way from our home to Philadelphia, to the Will Eyes Institute in Philadelphia. Then she drove me to work, where I did my best not to fall asleep. I was exhausted.The mask they made for the treatments made me feel claustrophobic and anxious so I was given a dose of Xanax for each and every visit. I was not allowed to drive.My dad died during my second week of treatment. “If you stop your treatments now, you could make things worse”. I was not able to attend Dad’s funeral in the Caribbean. My hair fell out and the skin around my eyes looked like a bad sunburn. All that weight I lost from the thyroid disease returned. Thank you, high dose steroids!I started to see a therapist. I was struggling to think positive. We brainstormed about using exercise but it's hard to exercise when you have low energy. We talked about using my photography to reduce stress so I started doing more street photography since I was walking around Center City between treatments anyway.June came around and I was told that the next course of treatment was orbital decompression surgery to reduce the pressure inside my eyes sockets. The eye muscles were swelling and putting pressure on my optic nerve and there was a danger or blindness. The surgery would be scheduled for the first week of September. There were certain risks but what could I do? I accepted the risk.After surgery, I developed strabismus; double vision. I need a break!I was told the strabismus was temporary but if it did not; “We can correct that”, says the surgeon. But not right away. You just had surgery, you have to wait until December but with any luck, it will go away. It did not.Weeks go by. I couldn't drive. Well, I could have, since I could see properly only from just under two feet from my face, driving would surely have been calamitous. Bhavna was back to driving me around to doctor appointments. The client reluctantly agreed to let me work from home. Without transportation, I was stuck inside by myself staring at a screen, unable to go out and interact with people. By the end of each day, I was wiped.Last week, I had my last eye surgery for 2019. My strabismus was corrected and I can drive, go hiking, take my camera around the area, etc.I nearly wasn't able to complete the CSA CCSK study course I started in August. I had to ask for an extension. I finally completed the course on Sunday. For the two weeks after surgery, I had spent Saturday and Sunday mornings and afternoons watching the training videos and taking tests. So, good riddance 2019.
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  3. Tuesday Photo Challenge – Trio by jansenphoto (Dutch goes the Photo)

    Three heads are better than one?

    We've all heard of the rules of thirds but have you heard of the rule of three?

    The rule of three is a writing principle that suggests that a trio of events or characters is more humorous, satisfying, or effective than other numbers in [the] execution of the story and engaging the reader. The reader or audience of this form of text is also thereby more likely to remember the information conveyed. This is because having three entities combines both brevity and rhythm with having the smallest amount of information to create a pattern. It makes the author or speaker appear knowledgeable while being both simple and catchy.Wikipedia

    Although a writing principle, one of my photography instructors, Loren Fisher, has suggested using this principle when composing images with more than one object of focus.I’ve been trying to use this principle in my images.This image was captured earlier this year near South Street Seaport during my lunch break. I used my Fuji X-T2 + XF16-55mmF2.8 R LM WR and shot using an ACROS Film Simulation Recipe by Ritchie Roesch.My participation in the photography challenge has decreased. My thyroid problem has not improved and has left me drained of energy and motivation. I will soon have surgery to remove my thyroid and I hope my energy and motivation will return.
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  4. After six months of trial and error my endocrinologist agreed that we needed to try something new.She proposed radioactive iodine treatment but I ruled that out. While we have general data on the success of that treatment (90%) we also know it does not work for some people and there are complications, especially for the eyes. I have three cousins who tried radioactive iodine treatment and ultimately ended up with surgery. I also learned from my mom that hyperthyroidism runs in her side of the family. She informed me that the entire McLaren family (which is my grandmother’s family from Carriacou) has thyroid problems. It has affected many of the grandkids. I am so lucky.I initially said yes to doing radioactive iodine treatment which, because of possible compromise of vision, required a trip to my ophthalmologist. He did some tests and then explained to me that I, in fact, had two diseases. Graves Disease and Graves Eye Disease(GED). He also advised me that neither radioactive iodine treatment nor a thyroidectomy would address GED. GED has to be treated separately and my options were limited. The proptosis in my eyes is worsening but until I recover from the thyroidectomy, there is nothing to be done.Sigh.Yesterday, I met with a surgeon at the Rutgers Cancer Institute of New Jersey in New Brunswick to discuss expectations and risks of a thyroidectomy. Surgery is scheduled for the second week of December.Am I scared? Yes. Absolutely. There is a risk of infection and bleeding. There is a risk of nerve damage leading to changes in speech.But the risk of untreated or poorly treated Graves Disease is higher. None of what I am experiencing right now is pleasant. Bhavna reminds me that the silver lining is that in a few weeks this chapter of my life will be in the past. But in the meantime, I’m shivering in the cold rain.
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  5. Over the last few months, my thyroid had put my body through a Gina yo-yo. My body responded well to the methimazole. A little too well. I went to hypothyroid again.Even though my dosage was half what it was when I went through this the last time, yet this new lower dose was too much. But we caught it early. I knew what the symptoms were and called the doctor. She ordered some blood tests which confirm what I was feeling.She prescribed some new medication to help me recover from, but it went too far. I did not back have hyperthyroidism. I was to stop that medication and take the methimazole.This morning I woke up and my eyes were swollen, the lymph nodes in my next and swollen and I generally feel terrible.The doctors warned that surgery might be my only option. I may soon have a thyroidectomy and after that, orbital eye surgery.
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  6. Tuesday Photo Challenge – Age by Frank Jansen (Dutch goes the Photo!)

    With Age comes wisdom and, like many a great wine, things can get better with Age!

    This image was captured in 2016 during a field trip to Philadelphia's Boathouse Row with the Princeton Photo Workshop and instructor Richard Sherman.My sensor must have been dirty that day. I removed at least ten of them using content-aware fill in Photoshop. I also removed a number of hot pixels. I then applied the Reflector Efex filter using Color Efex Pro 4. I didn't do any tweaking beyond this and I like the result.Sometimes it is worth it to go back to an image taken in the past, images that I didn't get around to processing, images that I may have processed previously but could benefit from new techniques that I have learned. I think photography is one of those art forms where the techniques can be easy to learn in the beginning but it takes time to become skilled at its use. But even then, being skilled is not enough. The photographer must continue to experiment to hopefully develop the wisdom to what to do and when to do it. I am still on that journey and personal wisdom, the sort that comes with age, tells me that I must focus on the destination while also enjoying the journey. Modern psychology agrees, "those who focused on the future were less likely to be depressed".

    A balance between the past, present, and future is needed. And a balance between the self and others. Where you’ve been, where you are, and where you are going are all important. And who you’re with.

    Doing this is especially important given my recent challenges with Graves' disease and how it has impacted my energy and my ability to get outside with the camera. And perhaps this will allow me to rejoin Frank's weekly photochallenge.
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