On the hunt for low-impact workouts!

I need some help finding workout videos on youtube that are low-impact and meant for people who can’t safely work out as hard as the general population. Please comment and share links to workouts that you yourself have found to be helpful!

I’m sure many of us in this group struggle with physically debilitating symptoms that make exercise difficult, if not damn near impossible or even completely impossible at times. I know I struggle with this myself. There are times when I can’t even stay sitting up (though those moments are extreme and rare, thankfully).

On occasion though, I have days when I feel like I can and should do some exercise. I am working on compiling a playlist that is good for people like myself who don’t have much tolerance for exercise. This is not meant for weight loss, as I believe we are ALL beautiful at whatever size out bodies are, but I do acknowledge that our bodies need a good healthy workout when we can manage it.

I have a rare condition called “Panhypopituitarism” (PHP). One of my biggest complications of this condition is adrenal insufficiency. Because of this, exercise most people can do just fine can actually lead to complications which can be life threatening to me, so it is important for me to not push myself very hard and be mindful of my heart rate as well as the feelings of weakness in my muscles courtesy of my adult growth hormone insufficiency, another complication of PHP.

Keep in mind, we are ALL at different levels regarding what we are able to do. Please don’t feel disheartened if someone suggests a workout that you aren’t able to do, and do not be afraid of suggesting videos because you don’t want to offend those of us who may not have the stamina to do the workout.

Also, PLEASE PLEASE PLEASE avoid diet and weight loss talk. There is no need for that here. This discussion is all about finding movement that feels good just for the sake of feeling good. Thank you!

I LOVE yoga and light aerobics, so bonus points for those.

Featured image courtesy of Pexels.com

Crossing Your Bridge: The difference between defeatism and realism

A sign on a bridge says that it can hold two tons of weight. If the bridge builder tells you you can not drive a three ton vehicle across it, he is not being a defeatist, he is admitting that the bridge has limits and he is protecting it from being destroyed.

I think that society takes for granted the fact that not everyone- not every bridge- has the same capabilities.

When I first admitted my limitations to someone very close to me, I was called a “defeatist”. I was accused of giving up simply because after learning my body’s limits and accepting that they are there, I admitted that those limits needed to be acknowledged for the sake of my well-being.

I was not giving up on life. I was not withdrawing from society and hiding in my misery. I simply admitted that my body was not fit for employment. I was admitting that continuing to work was causing my health to decline and I needed to stop before it got any worse. My bridge was bowing dangerously under weight that it could not carry. I had to decide whether to continue on with my current load, or back up and remove some weight to ensure that this bridge wouldn’t collapse beneath it.

My bridge is not as strong as most. I can carry some weight, but not much, and not often. My bridge is more of a footbridge than a freeway. It is not “defeatist” to admit that a footbridge cannot carry the weight of a semi truck.

Yet, society continues to look down on those of us with disabilities that keep us from working. I did not choose my disability. My health conditions are congenital, and they are not genetic. In fact, doctors don’t know for sure what the cause of this mutation is, so the blame for my poor health falls on no human being. Because of the complications brought on by my dysfunctional body, I am unable to obtain gainful employment. This is not something that I can help. There is no cure. My body is a dud, and there isn’t anything I can do to change that fact. I always try my best to get my body the treatments it needs to be as healthy as possible, but treatment is not a cure, and treatment for my condition is so complicated that it is mostly a matter of trial and error. Because of this, I spend a lot of time unwell while my doctors and I try to find the right balance of medications and treatments to keep my body functioning. If I were to try to do what a normally healthy person does every day, my health would suffer.

This is a fact.

Admitting that this is true does not make me a defeatist. It makes me a realist.

It is important to acknowledge your limits, even though society may judge you for it.

If you want to drive a semi truck across a footbridge, be my guest. Just don’t come crying to me when you wind up in the river.

Featured image courtesy of Pexels.com

Featuring: Albert Ki (Vusiuz)

I can’t tell you how excited I am to be able to feature this amazing artist. I have been a fan of Vusiuz for a very long time, watching him from the sidelines with a slight “senpai~” vibe. His 3D animations are smooth, unique, and just cool as hell. I am honored to present to you Albert Ki, better known online as “Vusiuz”!

14068573_10210819862111645_9214488561050736277_oAlbert is a 27 year-old professional animator in Indonesia. An alumni of Binus University, 3rd Generation Animation Major from 2008-2012, he is by no means an amateur. He first fell in love with art when he was just a young child, starting out with cutting paper and coloring as most children do. As he grew older, he developed an affinity for anime, and eventually found his way to 3D art. You can read all about his development as an artist in his journal entry here.

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Shadow Crow – Kira” a commissioned piece by Vusiuz (Character belongs to Pyro-Zombie)

He works as a freelance 3D character artist, working on random commissions at night, and movie projects during the day. He has worked in animation studios for projects including Knight KrisMarooned Land, and Undergreen Story. Currently, he is hard at work on an animation called “NORTH” , which is a feature-length 3D animated film, inspired by testimonials of survivors from North Korea’s political prisoner camps, currently a work in progress at TED. (I wasn’t aware of this until I interviewed him for this article, and now I’m going to be following this project very closely! Wow!)

 

Aside from his career, Albert has his own original project that he calls “Jitendrium Clockwork”, or “Jitenclock” for short. It’s a story about the most powerful villain in existence who went dormant long ago and has awakened again in the far off, distant future in a world that has become weak and frail. The sad state of the world has taken away his purpose as a villain, so he and his newly met comrades join together to change the fate of the planet. This is such a cool concept, I really hope he can complete it! Unfortunately, for now it is on hold. “If I work on it, I can’t do another project or commissions, I got no cash flow, but if I work for another project or commissions, I would not have time to continue Jitenclock, dilemma!” Albert confessed. I think he has the potential to make some money working on his own project on Patreon, but I completely understand the need to work an actual job to pay the bills.

You can find Albert on Facebook, Instagram, DeviantArt, Twitter, and Youtube, or by searching “Vusiuz” on Google.  He takes commissions, and you can find all of his commission information here. His prices are VERY fair for the quality of his work.

 

Featured image: “LogoGlitch” by Vusiuz

 

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Do you want to have your art featured on my blog? I’m super picky about the artists I feature here, but you can fill out a feature request form and I’ll help give you a signal boost however I can, even if you don’t quite make the cut for a feature article. 

Featuring: Ilyaev

Ilyaev is a 27 year-old freelance artist and English teacher currently residing in Japan. I first encountered her artwork many years ago on DeviantArt, and I am honored that she has agreed to let me feature her work here. Her smooth, uniquely-styled digital paintings stand out from the crowd and have a very relaxing and cozy feel to them.

She grew up in the UK with her young mother, and despite not having much in the way of funds to buy art supplies, she managed to satisfy her artistic drive by drawing on the back of scrap work papers given to her by her aunt. Growing up, her biggest inspirations were Disney, anime, and video games. When she reached her teenage years, Ilyaev discovered pre-raphelite art, which led her to discover Alphonse Mucha, who became an influential source of inspiration for her.

She started learning how to paint digitally when she was 13, but didn’t try traditional painting until she reached high school, and her natural talent with the medium caused her art teacher to do a double-take.

Her biggest motivator was her IT teacher in High School, who took her under his wing and let her borrow his art books and magazines on digital art. “I’m still aiming for the day I get in one, so I can send him a copy to say thank you,” Ilyaev said. “Unlike other teachers who scolded me for drawing and doodling, he encouraged me to use art to do my work.”

She had a year of formal art education in the form of a Foundation degree.  “I enjoyed it, but I didn’t really do well. I never really understood how to get good grades in art school,” she said. “I could draw, I could paint, but I never seemed to check their boxes and they wouldn’t explain it.” In the end, she became frustrated and sought a video game degree instead. After receiving her degree at a first and 2:1, she went on to attend “Dare to be Digital“, an international competition in games. “It was great, and I got to work on games and do art all the time.” After that, she moved to Japan.

When it comes to tools, Ilyaev says she has tried pretty much all of them. “I enjoy digital art because its more forgiving. If you mess up its much easier to fix the eye being a bit big, or a bit too far on the right, where as traditional medium you may have to start again. Though I’m currently enjoying inks with water colour. You can layer the inks like a value painting (black, grey and white) and then add colour after. Which feels like a nice, solid technique. Usually I use my little Wacom Draw and computer, or my Surface tablet when I’m away from home, like this week where I’m in a hotel for the week for work.”

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She is currently being commissioned to help create a comic book, which she is not yet at liberty to talk about, but she has very high hopes for the project and is very happy with the direction in which it is going. 

 

She does take commissions. You can email her, or find her on DeviantArt, Facebook, Instagram, Wysp, and other social media platforms under the name “Ilyaev” or “IlyaevArt”.

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Featured Image: “Banner – Queen” by Ilyaev

The guilt of feeling well

The title of this article might seem absurd to most people, but those of us living with chronic illness won’t even do a double-take. Generally, people have good health that is consistent day-to-day, save for the occasional cold or flu, so this isn’t something most people even think to consider. It’s hard for most people to understand having energy some days, and feeling unwell on others for seemingly no reason at all.

Anyone living with the fatigue that accompanies many chronic illnesses can tell you that there is no such thing as “normal” for us. One day, we might wake up feeling like we can conquer the world, but we can not promise you that we’ll be able to get out of bed the next morning, or that we won’t have to cancel out plans for this evening thanks to a flare-up out of nowhere. That’s where a lot of this “grief” comes from; those nights when we have to cancel plans due to a sudden wave unanticipated exhaustion.

Of course, the fatigue is only one of many symptoms of chronic illnesses, but I’m focusing on it for this article as I have the most experience dealing with it due to my Panhypopituitarism and the Secondary Adrenal Insufficiency and numerous hormonal deficiencies caused by it. With Adrenal Insufficiency, the fatigue is brought on by complications with my adrenal glands, and it doesn’t take much to cause a flare-up. Even emotional stress has a real, physiological affect on my overall health that can be seen in lab tests. This is not a case of “mind over matter”, but a real physical symptom of a disorder that can be life-threatening. An imbalance in many of the hormones I am deficient in can cause debilitating bouts of fatigue, vertigo, and just general malaise as well.

Every diagnosis that fits the label of chronic illness has its unique complications and some are harder to cope with than others, but fatigue is consistently one of the more debilitating symptoms, which is why I am choosing to focus on that for now.

Before I go any further, I want to clarify what exactly fatigue is. This is not tiredness or feeling sleepy. The Mighty has an excellent video explaining it. Please watch this. It’s short, and to the point:

Because the fatigue is so overwhelming, we simply can’t “tough it out”. Doing so might put us in danger of passing out, or falling over and injuring ourselves, and that’s despite the fact that it just physically feels awful. Even forcing myself to sit up during a particularly bad bout of fatigue makes me feel nauseous and shaky. Sometimes if it’s just minor fatigue spell, a cup of coffee can help get me through it, but that’s rare. Usually, I have no choice but to lay down to rest, even if I had planned to do something I was really excited for. I can’t tell you the number of times I have had to cancel outings with friends and family because of the fatigue alone. I have tried to push through it a few times, and I always wind up feeling miserable, so I’ve learned to listen to by body and rest when it demands it.

Of course, that carries some social consequences. To people who don’t understand our illnesses, it may seem like we are blowing them off if they see us going out and having fun one day, and cancelling plans with them the next. It can look like we’re making excuses not to see them, when in reality we’re sitting at home feeling like crap physically, and beating ourselves up emotionally because we had to cancel.

While that by itself is difficult, I personally find it even harder to cope with the guilt I feel when I’m having a good day. I lost by job because of the fatigue and vertigo spells that overwhelm me at unpredictable times. Because I am unable to keep a job thanks to these complications, I decided to apply for disability. The process is long, stressful, and disheartening. I have been denied twice already. My attorney and I are appealing to see a judge now. With all of this going on, it’s hard for me to appreciate those rare “good energy” days when I have them.

Despite the fact that I know that the symptoms I feel are real and do require rest at times, I can’t help but feel like a hypocrite when I cancel plans one day and go out on the town the next, and when I DO go out and have fun on those good days, I can’t help but grapple with the thought that I could easily be at work somewhere in that moment. There are some days when I feel like I COULD be at work bringing in some pay to help with bills and groceries. Unfortunately, days like that are very few and far in-between. It isn’t uncommon for me to go a couple of weeks without having a “good energy” day. Most of the time, I am so weak I can barely keep up with household chores, let alone a part-time job. I know that if I were to go out and get a job, no employer would put up with having such an unreliable employee. Having a regular schedule just does not work when you can’t predict when you will be stuck in bed.

This is a boatload of emotion for me, personally, and I have a feeling many of you can relate to it. It’s so hard to enjoy myself when I’m feeling well, because I know it must look like I’m lying about my bad days.

This may seem odd, but I have grappled with the feeling that I shouldn’t go out and enjoy those good days. I feel like if I don’t stay at home and keep with the appearance of being ill, people won’t believe that I really am unwell. I don’t do that to myself, of course. I make the most of those days when I have them, but I still have that pang of guilt, especially when I can tell someone is judging me for doing so.

I don’t have a solution for this. As a matter of fact, I am currently seeing a therapist to help me cope with these thoughts and the depression brought on by them, as well as the depression from my hormonal imbalances courtesy of Panhypopititarism. I wish I had some advice to give those of you struggling with those thoughts as well, but as of right now, I’m at a loss just as much as you are. All I can say is, even though this is extremely rare and you are not likely to meet another person with this condition outside of the internet, you are not alone. I’m here, and I know how it feels. I’m always free to talk if you ever need to. You can reach me via any of the social media platforms listed under the “social media” menu at the top of this page.

If you are on Facebook, check out this support group for Congenital Panhypopituitarism patients. If you do not have CPHP, but you struggle with other chronic illnesses, there are a plethora of amazing support groups on Facebook for you as well! My favorite out of all of them so far has been “MBMBaM Spoonies“, a group specifically for those of us with chronic illness who also happen to be fans of “My Brother, My Brother, and Me“.

Even though I struggle with this guilt and shame, I always try to remember that this was not my fault. This was not my choice. These symptoms are real, and what I feel is real. My experiences are real, and my frustration is valid. Anyone who chooses not to believe this is ignorant, and I should really pity them for being unable to show compassion for someone enduring something that would likely break them.

I am physically weak as hell, but I am stronger than they will ever be. 

I just need to keep remembering that, and I hope you will as well.

 

Featured image courtesy of Pexels.com

From part-time employee to full-time patient: Losing a job due to chronic illness

I often find myself referencing the time I spent trying to work despite the complications caused by my Panhypopituitarism, so I decided I should probably dedicate a post to it, that way I can insert a link for reference rather than making every post referencing it unnecessarily long. 
*** Heads up- I do utilize some mild profanity ***

For those of you who don’t know, I have a rare congenital condition called “Panhypopituitarism” (PHP). It is caused by Septo-Optic Dysplasia (SOD), a complication stemming from Optic Nerve Hypoplasia (ONH). Long story short, my pituitary gland does not function well, so my body does not make the hormones it needs to survive on its own. I see a specialist, follow strict medication regimens, and have blood tests every three months to track and treat it. There is no cure, and while treatment for this condition has taken great strides over the years, it is still not perfect and is often a case of trial and error. Symptoms can be debilitating when hormones are out of balance, and getting improper treatment can have devastating consequences. With the proper care, a PHP patient can live a normal life, but some patients (like myself) have a very severe case that can lead to disability.

A couple of years ago when I first got back on Growth Hormone therapy and my overall health and energy improved so much, I decided to get a job at Kroger. First off, let me praise Kroger for how well they treated me. This is an amazing company to work for. I can not stress enough how much I appreciate them. It’s a grocery store chain that is well-known here in Indiana. When I applied for the job, I told the interviewer about my health, and I warned him that this was a trial for me to see if I could handle work, since my previous attempt at working led to illness that caused me to have to quit. He said he was willing to let me give it a shot, and I was hired on as a Courtesy Clerk (bagger) right away. I started with 15-hour work weeks, the lowest amount of hours I could have. I worked hard, and came in any time they asked me to. After just a couple of weeks, my bosses took notice of my work ethic and I was promoted to work in the produce department. I got a raise, and more responsibilities.

I loved working back there. I know it seems kind of silly, but making sure produce was fresh and assisting customers with their questions made me feel like I was doing something that contributed to society. I took pride in that job, and I gave it everything I had. My bosses were happy with my effort, and I would often stay hours after my schedule just to make sure everything was prepared for the morning crew before I left for the night. My hours went from 15 a week, to about 30 within a pretty short amount of time. Some days, I would work a full 12 hours. I still felt great, so I didn’t hold myself back. There was talk among my bosses about possibly giving me a management position within the department, and they started training me on the computer system used to manage orders and inventory. It was really exciting, and I was so proud of myself!

Seemingly out of nowhere, I got sick.

The symptoms came on so suddenly. It started out as just an annoying cold, so I took some medicine and laid down to rest. When I woke up, I felt so disoriented, nauseated, and weak. It took everything I had to get out of bed and stumble to the bathroom so I could puke. My stomach was empty, so I was just dry heaving. I felt like absolute crap, so I decided it would be a good idea to take a stress dose of my Hydrocortisone and drink some water. I could not keep it down, and I could tell by the intense feelings of weakness and how delirious I was that this was likely an adrenal crisis. I had never experienced one before, but I knew that this was a risk with my Adrenal Insufficiency, and I knew how serious it is. Adrenal Crises can be fatal without proper treatment.

I immediately asked for a ride to the ER. My grandma met me at the hospital and helped explain my condition to the doctors. She stayed by my side through the whole thing, which was extremely helpful, since I was having a very hard time concentrating. The ER doctor wasn’t well educated on adrenal crisis, but he quickly educated himself and gave me the treatment I needed as soon as he could. My memory of that night is pretty fuzzy, but they took some blood for a test, hooked me up to an IV with saline solution, and started on the lifesaving steroid treatment. After a couple of hours in the ER, they informed me that I would have to be admitted to the hospital for the night. I was taken up to a really nice room, which was private and super cozy. Hospital stays are expensive as hell, but damn if the bed wasn’t comfortable.

The doctor and nurses were all so great. I went though 4 bags of saline, IV steroids every so often, and an EKG test because my resting heart rate was over 100. They wouldn’t let me leave until it went down to at least 90. I called my boss and informed him that I was in the hospital and I would be missing work that night, but I said I might be back tomorrow, which is really silly to look back on, but I was so hyped up on steroids I was actually feeling pretty darn great.

Afraid of my hospital bill (I had CRAPPY insurance via United Healthcare. Dropping their name on purpose because I had the worst experiences with them. I even reported them to the DOI and they got a slap on the wrist. I highly recommend you go to their Facebook page and read their reviews. I am not the only person who had an issue with them.) I left the hospital as soon as I was able to.

My grandma insisted that I stay at her house for a few days. I was happy to, I love spending time with her anyway. Later that night after I got back from the hospital, I quickly developed a really bad cold, which turned into bronchitis. I had a difficult time breathing, and had to see another doctor, who prescribed a nebulizer and some medicine to help me recover. I was stuck in bed from this for about a week. After I recovered, I went back to work, but my endocrinologist and lung specialist both imposed restrictions for my work. I was not allowed to lift 50lbs or more and I could no longer work in refrigerated parts of the store because of my asthma (which was listed on my medical record as a cause of my adrenal crisis).

In the produce department, you occasionally have to lift 50lbs of potatoes, and other heavy boxes of produce, and the produce stock room was refrigerated. I tried to continue working there, but my body was still pretty weak, and the new limitations made me a dud of an employee. I always had to be scheduled to work with someone else so they could go into the cooler for me. I was used to working solo, so that was really stressful, and I felt so guilty, I decided to talk to my boss about moving me to another department. Luckily, there were some openings in the grocery department. There was no cooler to worry about, and my bosses were super flexible and didn’t ask me to do any heavy lifting, which is actually a pretty common part of that job.

I stayed in the grocery department for a while, and I was occasionally passed from department to department when hours needed filled, so I worked just about everywhere in the store, and when the manager of the floral and nutrition departments took some time off for medical leave, I became a candidate for her position.

My bosses were really good about understanding my limitations and respecting my restrictions. All of them but one, that is. She was a new manager from another store, and she immediately got a reputation for being too much of a hard-ass, and rude to boot. I didn’t mind the hard-ass part, since that is a boss’s job, but she was just… mean. I can get along with just about everybody, but I she really rubbed me the wrong way. It didn’t matter how hard I tried at my job, she seemed to completely disregard me as a person. She was told about my restrictions, yet she scheduled me to work in the dairy department by myself with no training, and I’m sure you can probably guess that the entire workspace for that department is refrigerated.

Not only was I scheduled to run that department for an entire night on my own with no training, but she expected me to also run the grocery department on my own as well. I went to her office to talk to her about it, and I explained my restrictions, and she basically told me to just tough it out. I talked to some other employees in the store that night, and they were very upset with her. I am so grateful for the other workers that night, because they insisted that I stay out of the cooler and they restocked the shelves there for me (Shoutout to you folks working with me that night. You know who you are, and I love you guys). I really should have reported that manager to the union, but I didn’t want to get anyone into trouble and I HATE drama.

I continued to try to work as hard as I could, but my health was on a steady decline. I started having intense bouts of fatigue and would have to take frequent breaks to recover. I took way more breaks than was allowed, but again, most of my bosses were so understanding, and while the new manager was petty about it, she didn’t stop me from resting when I needed to. Despite that, my work ethic wasn’t lost on the new manager either. She offered to give me the position of department head for the floral and nutrition departments. I felt so honored that I was being considered for the position, I immediately said yes without fully considering the job I was agreeing to do.

She started training me on running the department, and I maintained it on my own for a few days, but it was clear to me that I just did not have the stamina for that position. As department head, it would fall on me to keep the entire department in order. I would have employees to care for it on my days of, but if I had to miss any days that required the department head to carry out their responsibilities, the entire department, and the overall store in turn, would suffer. I put some serious thought to it, and decided that while I was flattered by the offer and I knew I had the right mindset to lead a department, my health was just not reliable enough to take on that much responsibility.

I was very nervous about talking to the manager about this, but I knew I had to. I knew that if I just took the job without taking my health into consideration, it would be very irresponsible of me. It was inevitable that I would have to call off some days because of the intense bouts of fatigue that occasionally left me bedridden. It wouldn’t be right for me to take on the position when there were other employees interested in the promotion who had perfectly healthy and reliable bodies.

I walked up to her office on one of my days off, and asked to speak with her. I thanked her for the opportunity, and asked her if she was aware of my health conditions. She said she wasn’t, which was understandable considering how new she was. I informed her that when I was hired, I warned my employer that my health might fail me at some point. I felt defeated to have to admit it, but I told her that my health had declined so much that I could not take the management position. I explained to her the complications that come with my conditions, and explained to her that even though I really did want to take on the management position, I didn’t think it was in the best interest of the store.

She looked me straight in the eyes and said, “Do you know what I think? I think you don’t want to do it.”

God, it hurts to even type that out. I felt like breaking down when I heard those words. I wanted to snap. I wanted to give her a thorough scolding for what she just said to me, but I kept calm. I calmly explained to her that she was mistaken. I told her “I’m sorry you think I’m just lazy. I am not. My body just doesn’t function right. If you think it’s frustrating having an employee who can’t do what you expect of them, imagine what it’s like to have a body that doesn’t want to work half the time.”

She did not apologize, but she continued to try to convince me to take the job anyway. I told her that I would not take the position, but thanked her again for the opportunity, and I walked home shaking and on the verge of tears. When I got home, I immediately broke down. That was the absolute worst feeling. I felt so hopeless and frustrated, and the guilt of having to admit my limitations only to receive THAT response tore me up. I almost quit my job then and there, but I decided that I was better than that, and I needed to stay strong. I wasn’t about to let one shitty boss ruin my entire work experience.

When I went back to work, I swallowed my pride and acted like the conversation with that manager had never happened. My interactions with her were professional and courteous even though every time I saw her, my blood boiled. She seemed to keep her distance, which was fine by me. I put some serious thought to reporting her to my union, but honestly I took pity on her ignorance. She was an ableist jerk, but  I didn’t think it was worth losing her job over. I just let it go and focused on my job.

I started getting so weak at work that I had to leave early more and more often, and missed days entirely. It was clear that my body was no longer able to handle physical labor. I talked to my bosses about it, and they allowed me to work as a cashier instead. I spent quite a lot of time working in the liquor store, which I quickly grew to love. The customers were fun and interesting, and I was able to work alone again. I stayed at the register most of the time, and walked around once in a while to make sure everything was neatly stocked and clean. The liquor store manager and I became pretty good friends, ans things were going great. I kept a stool behind the counter so I could sit down when I needed to, and nobody made me feel self-conscious about my limitations.

Things continued to decline. I missed more and more work, and the dizzy spells became more frequent. Because I was not recovering an things seemed to be declining further, I reached out to my doctors to try to figure out what was going on with my body.

My endocrinologist at the time said that I was experiencing vertigo, but it had nothing to do with my Panhypopituitarism (I know now that he was dead wrong, but we’ll get there). He instructed me to see my primary care physician about it, so I did. She examined me and said she couldn’t figure out why I was having vertigo either, so she referred me to an ENT specialist. He told me that due to the double-nystagmus from my Optic Nerve Hypoplasia, he could not determine if my problem was from an inner-ear condition or something else, so he ordered an MRI to rule out brain tumors. I had the MRI, which didn’t come back with anything out of the ordinary, other that what we were already aware of regarding my ONH/SOD and PHP. I called the ENT and asked what I should do about the dizziness, and he said he was at a loss about how to help me, but offered to refer me to his colleague, who might be able to help. At this point, I was exhausted trying to find an answer. I was tired of being passed from doctor to doctor with no luck getting an answer at all. I just gave up.

The dizziness continued, and became more intense and frequent. I eventually got to the point where even sitting up in a char was too much. I had to quit my job. I put in my two-week’s notice and my bosses scheduled me for the least amount of hours possible, but I still missed most of those days.

After I quit, I spent all my time resting and recovering, and wondering what I was going to do about the loss of the paycheck I was bringing in. At the time, my fiancee had a job that didn’t pay well, and on top of that, his hours were being drastically cut because his employer was losing a contract. We were slipping into some very hard financial times. I applied for food stamps, which was very helpful, but not enough to keep us afloat. Justin started looking for other employment and we went though a period of him being passed from one insecure job to another. He has a pretty good job now, thankfully, but at the time, we were really struggling.

I decided that since my health was too poor for me to handle work, I should pursue disability. I spoke with my endocrinologist about it, and he immediately told me that he refused to support my disability claim. I spoke with his nurse about it later and she told me that he just has a personal problem with disability benefits in general and does not think anyone should be on disability, so he refuses to help any of his patients get it.

I was heartbroken. I felt frustrated, trapped, and hopeless. Having a medical professional invalidate what I was going through destroyed me. I went down a spiral of depression that took me to some pretty dark places. Self-loathing and suicidal thoughts hit me frequently. I felt like a burden, and I saw no value in my life. Thankfully, I had some very supportive people around. My fiancee, grandmother, my friends, and even some of my old co-workers did their best to help keep my spirits high.

I decided to seek a second opinion from another endocrinologist to see what they had to say about the dizziness I was experiencing, and honestly I was ready to just drop the other endocrinologist after how he made me feel. The new endocrinologist I saw was so much more understanding, and seemed better educated on my conditions. She took one look at the dose of steroids he had me on and said that was dangerously high. She immediately changed my treatment and decreased my dose to a reasonable amount, and explained to me how to stress dose when I needed to. My previous endocrinologist only ever allowed me to stress dose when I had an infection. I learned from my new endocrinologist that he was not treating me correctly, and might actually have been the reason I was so sick. She explained that I should stress dose when I am feeling unwell, even during intense emotional stress, and before I exercise. She also went on to explain that vertigo is actually a common symptom of adrenal insufficiency, hypothyroidism, and hypogonadism, among other deficiencies that I have. She said we needed to work on balancing my hormones better, decrease those steroids, and avoid stress for a while until the vertigo decreases. She also told me that the adrenal crisis I had could have caused a permanent decline in  my overall health. I was so thankful for her, and I immediately dropped that other endocrinologist so I could see her instead.

After about a month or so under her care, my health really started improving. I wasn’t out of the woods, but I was feeling better. I didn’t talk to her about disability for fear of being invalidated again, but she made me feel so much more understood and cared for. Unfortunately, I had to switch to a different endocrinologist who was a little closer to home, but this new endocrinologist was actually even better! She continued to keep me on the same treatment, just increased my thyroid meds a little bit, and continued to monitor my symptoms and keep track of everything.

After seeing her for a few months, I finally opened up to her that I was seeking disability, and she gave me complete support. She told me that there was no way that I could handle a full-time job with my conditions, since I’m already working full-time as my own pituitary gland, and she even went so far as to write a wonderful letter to the disability office expressing her support for my disability claim. I left her office that day just beaming. GOD it felt do GOOD to be validated by a professional after all the hell I had been through.

I am still fighting for disability. My claim was denied twice, but I have an attorney now and we are currently awaiting a court date to be scheduled for my hearing. Please wish me luck!

My health is still very poor, but I have improved a lot. The vertigo doesn’t occur as often as it used to. I am struggling with some other difficult symptoms right now because of a change in my treatment (I switched from birth control to oral estrogen and progesterone because the birth control was causing a severe decline in bone health), but once we get everything balanced out, I should be doing fairly well!

While I will never be able to find gainful employment, I still contribute to my community through volunteer work when I can handle it, and I’m organizing a fundraiser to help the homeless population within my county. Society still makes me feel guilty for not having a job, and I hate the days when I can;t get out of bed, but I am trying as hard as I can to still enjoy life with a positive outlook.

Follow my blog or my Facebook page (or both) if you want updates from me! I’m also on YouTube and some other platforms. You can find all kinds of links under the “social media” menu at the top of this page. I’m going to try to write more articles. I have a few projects in the works, but spoons are rare these days. ❤

If you would like to help financially support my blog, check out this article. Thanks! ❤

Featured image courtesy of Pexels.com

Just for the record, that problem manager no longer works at that store.

 

I’m alive, just not 100% these days

I really do apologize for not keeping up on here. I need to write more articles and get back to featuring artists like I used to! Unfortunately, my health has taken a bit of a bad turn in recent weeks. Energy is hard to come by. I know it’s all thanks to my hormones being out of balance, and my endocrinologist and I are doing everything we can to get that all straightened out, but Panhypopituitarism is so complicated to treat, this is going to take some time before we can do a blood test to check my levels, and even more time after that to see any sort of change in my well-being after doses are adjusted.

Unfortunately due to my health being crap and disability taking forever to get approved, I am not bringing in a paycheck. My fiancee has a great job that gets the bills paid, but we don’t have much in the way of funds for things like this website. My yearly bill to keep this site up and running is just around the corner, and I would like to keep my domain, so I’m going to swallow my pride and go ahead and leave this donation link here. Any and all funds will go towards my $35 fee to keep my site up and running.

Thanks in advance! I completely understand if you can’t afford to help, or have other things to spend your hard-earned money on, but just in case… here you go! ❤

To donate via StreamLabs, click this button:
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To donate via PayPal, click this button:panel-57474960-image-f13528b366a09c6a-320-320

 

If you want to donate and get some art in the process, you can buy from my prints shop here. Just leave a comment or a message saying that your purchase was intended as a donation, and I will make sure to use the money you spent on the print to pay my WordPress bill. Thank you!

Your art can help the homeless!

Hey guys! It’s been a while. I apologize for disappearing again, but life is as life tends to be… a hectic and distracting flow of events. One such event is the formation of a local charity that I decided to start in my small town.

vintage-music-closed-shop (2)I live in Fayette County, Indiana. It’s a small town that you can pass completely through in a matter of just about 15 minutes by car. It used to be an industrial town before the largest factories shut down and moved its jobs overseas. When that happened, so many people lost their jobs, and many of them close to retirement lost everything. There isn’t much in this town, but most people here can not afford to move. Even worse, Fayette County was discovered to be the hardest hit city in our state’s serious opioid epidemic.

Between the devastating job loss and the widespread opiod use causing hardships that have affected every family here, some people have lost their homes, and have nowhere to go. Even though this is such a small town, a census recently discovered that there are at least 19 authentically homeless people living within my town. These are people who have no place to stay, period. The census takers did not count couch-surfers, or people who receive help from friends or family. These people have nothing.

Because this is such a small town, there are no resources available to help them. Some churches offer free meals, and there is a rehab center here in town, but it is not enough to help this growing population of homeless people. We have no homeless shelters, and the only FSSA office in town closed down last year, so anyone who needs help applying for assistance has to contact them by phone, or travel to another city, both of which are difficult to do if you’re homeless.

A local nonprofit, a 501C3 known as “Saved By Grace Ministries” is trying to raise money to establish homeless shelters and more rehab centers here in town.

I came up with an idea for a fundraiser for them. Last year, I donated a painting to the Chamber of Commerce for a silent auction fundraiser they were having, and it sold for $100! I was surprised that it had raised that much money for the chamber, and I thought… I wonder how much money I could raise for charity by having a silent auction full of art donations from charitable artists?

So… I came up with The Heart Gallery

“The Heart Gallery” is a local charity organization that aims to fund projects that will enrich Fayette County, Indiana! (We are NOT an official nonprofit, donations to our charity are not eligible as a tax write-off.)

Our goal is to accept art donations from local artists and crafters throughout the year, and once a year host an event where we place all the donated artwork on display gallery-style and have a silent auction where buyers can bid on the pieces on display.

On top of raising money for charity, The Heart Gallery will be an awesome way for local artists (that includes photographers, if you donate large prints of your work!) to get their names out there! They will be invited to stand at the event and talk to potential bidders about their work and offer contact information for commissions and whatnot, like a real gallery event. While we are a local event, artists from anywhere in the world are invited to donate their work, and even if they can’t attend the event, we will advertise your website and contact information if you would like. Anonymous donations of artwork are also welcome.

Thanks to months of hard work, and the support of many amazing people, including Dot Foods and the local Parks and Recreation Department, our charity auction is scheduled for February 10th.

The gallery will open at 12:00 pm, and anyone is welcome to come look at the works on display. Starting at 1pm and continuing until 3pm, we will be having a silent auction where people can bid on the pieces on display! At 3pm, the auction will come to a close, and we will be distributing the purchased artwork to the bidders until 4pm.

We have received some amazing donations already, but it is not quite enough to have a complete gallery event. We have from now until January 20th to accept donations of art, crafts, photography prints, and other forms of art. If you would like to donate some of your work (fine art prints are accepted!), please comment or send me a note, or you can contact the charity via Facebook. We’ll have a P.O. Box set up soon to accept donations. I will only be accepting donations over the internet until January 1st to assure they will arrive in time for the auction.

Thanks so much for taking the time to read this! Please share this if you can! I need help spreading the word. I know there are some amazing artists here who would love to help.

Together, we can make a difference!

When we first got started, I was honored to have The Heart Gallery featured on the front page of the paper, above the fold!

NOTE: We are NOT affiliated with “The Heart Gallery of America, Inc.”. I named my charity “The Heart Gallery” before I knew of this organization. I called ans spoke with their director and they have kindly given me permission to continue to use this name.

Yes, there IS a difference between ONH and SOD.

I have been confused by this for a very long time. Some credible online resources claim that Optic Nerve Hypoplasia (ONH), and Septo-Optic Dysplasia (SOD) are the same thing. I went on thinking that was true for the longest time, until I dug a little deeper and learned that there is, in fact, a difference.

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Dr. Richard Windsor, shown discussing another condition known as Hemianopsia. (image credit)

Today, I went to the Low Vision Expo in Indianapolis to listen to Dr. Richard Windsor and his daughter speak about the advancements in assistive technology for the visually impaired. He is a world-renowned eye specialist who also happens to be my eye doctor. After his speech was over, he invited people to ask questions. I waited for the crowd to clear out, and I asked him if I could do a short interview on camera discussing ONH. He graciously agreed to do that, because he’s a great guy who just genuinely likes to help people. Thanks again for taking the time to speak with me!

I asked him to explain the differences between ONH and SOD. I’m paraphrasing, but he said that ONH is a deformation of the optic nerve in which it does not develop properly, becoming too small, or not attaching well enough to function fully. Some patients lose all of their vision, while others may only have partial vision loss. He goes into more detail in the video. Septo-Optic Dysplasia is another complication that is often seen with ONH, but there are some ONH patients that do not have SOD. They are not the same thing, SOD is a diagnosis that describes further complications related to the optic nerve being under-developed, as well as further dysfunctions within the brain. Read more here.

So… mystery solved! Unfortunately, the National Organization for Rare Disorders (NORD) is incorrectly claiming that ONH and SOD are the same thing, which has contributed to this confusion. I have contacted them and asked them to fix that. NORD is an excellent resource for information related to rare disorders, and they cover so many rare conditions, accidents are bound to happen. I don’t hold this against them, but I do want to correct the issue.

Thank you for reading! Here is the full interview with Dr. Richard Windsor. You can find his information here.

Featured Image credit