Author: dloboss

Today, my brother was sharing a memory of the day my sister was born and how my mom dropped him and my other brother off at my grandmother’s house while she was on her way to the hospital. They passed the time playing and building forts and remembers another reason why it was so much fun because my grandmother had made homemade tortillas and a pot of beans. It brought back memories of when I was little and would often build forts with two or more chairs and put a couple of sheets or blankets over them. I would also go underneath the kitchen table if I wanted a bigger fort. I also had my other special hiding place in my closet where there was this little teeny tiny space off to the side where you could crawl onto a shelf behind my clothes. I would visit that space quite often to escape whatever scared me whether real or imaginary. I felt safe and secure in my forts and closet where no one could see me and I was invisible to the world as if for that moment I didn’t exist.

Today, I really needed a fort to escape what was before me. I wanted to run into my closet and hide from reality. It’s challenging when you’re dealing with other people’s emotions, fears, joys, pains, struggles, etc when you have your own to process and deal with. I guess this may be how it feels when you have children. You want to fix everything, make everything right, take away anything that may cause them harm, keep them safe, and have control. When I was little, I could get away with hiding to escape and when I was ready to face life again, I came out. It didn’t take very long because I was claustrophobic. Then all was well with the world until I got scared again then back to the closet. I spent a lot of time alone so that hiding place was my friend. As a child, it was so easy for me to hide and I honestly felt like it solved all my problems no matter how big or small. As an adult, it’s not so easy. I have responsibilities not only to myself but to others and I can’t afford to hide or escape. I’m recognizing that as I’ve gotten older, it’s harder to face certain things that never used to bother me before. It’s a scary feeling when you come to terms with this reality and how your mind can deceive you at times. I think for me now that I’m recognizing this, I can deal with it without any shame because I know that I’m not alone. Sometimes it’s easier said than done, but all things are possible through Christ Jesus who strengthens me.

I was physically, mentally, and emotionally drained from today’s events. No need to share at this time what took place, but despite the information overload, questions, frustrations, doubt, and taking extra steroids to deal with all this, it was still a good day and I’m grateful for how things played out. I even found time to laugh in the midst of this.

I can’t do what I used to do and hide out in my forts or closet anymore (or can I?) to escape reality and close out the world, but I can make me some homemade tortillas and a pot of beans!

Enemy- A person who is actively opposed or hostile to someone or something. A thing that harms or weakens something else.

It’s been 12 years since I was diagnosed with Panhypopituitarism, Hypothyroid, Secondary Adrenal Insufficiency, and Traumatic Optic Nerve Neuropathy. Over the last 6 years I’ve been battling Steroid Myopathy and over the last 2 years, it’s progressed to the point of me needing to use a cane for mobility. I’ve had 8 different Endocrinologist’s in a 11 year span. Now technically I have my 9th one but, that was due to moving to Texas. It was a series of relationships that seemed more one sided to me. They were the experts in my medical conditions and based off of the information in my file, tests, results, etc they would put together their chemistry experiments of different medications and use them on me. They consistently would never take my questions, opinions, concerns, or experience in living with these conditions on a daily basis into account. It was all about them being in control of my treatment. They were too busy playing “god” to realize what they were doing. To be fair, in hindsight I do wish I knew more about my disease at that time to be able to have some ammunition with me when I went to these appointments. I could’ve challenged their theories and facts. But no, I was naive and took what they said as the gospel and continued to play lab rat for them. All the chemistry experiments were always the same just different versions. Bottom line, none of them worked. They were exhausting, they wasted my time, my money, and my energy that I didn’t have to spare. To me, each of these physicians were the enemy and they were winning this battle. I reached so many lows that there wasn’t any more low to go. I was below ground and in denial that I wasn’t depressed. Among the many routine questions asked by my physicians were the following. Do you experience depression? Are you a threat to yourself or someone else? My answer always was no, I’m pissed off! As far as the second question, I was biting my tongue because I was so frustrated and angry that I wanted to say yes, because I wanted to lash out at them and scream! I remember one time I left one of my physician’s office so upset and crying that I went into the women’s bathroom and made sure it was empty first and just started kicking the bathroom stall doors. In reality, I was depressed but just didn’t want to admit it to myself.

One day in 2013, a light bulb came on in my head and I had the thought that there must be other people dealing with this same issue with physicians not treating their medical conditions property. I can’t be the only one! There has to be some sort of support group for people who have my disease. So in comes Facebook to the rescue! The one thing I had determined to stay away from because I thought it was the enemy. Well, it can be both your enemy and friend and a love hate relationship. In this situation, it became my friend because I discovered a whole other world of support groups of people who are battling the same diseases I have. You cannot imagine my amazement when I realized that I wasn’t alone in this! I’m not crazy (well….sometimes) or imagining things (well…sometimes), but not in this case of my health and the physical and mental toll it was taking on me. Some physicians have a way of making you feel like you don’t know what you’re talking about and because you’re not the one with the medical degrees you’re clueless about your own health. I started to feel empowered by what I was learning and being able to share my experiences frustrations, and questions with others and them sharing the same thing with me. I could take what I was learning from the support groups to my physicians and actually have a discussion about it. The tides were beginning to change and I was beginning to realize that I needed to be my own advocate.

The tides took time to change and they are still changing. This process requires determination, patience, education, vulnerability, honesty, and lots of hard work. It’s not for the faint of heart. You can feel like you took a step forward and then literally get knocked back on your ass like you never even moved. Even in the midst of this you see you’ve made some progress and it though it may be small, you can’t and must not give up. I slowly began to see that maybe the physicians weren’t the only enemy. Maybe I was also the enemy. I wasn’t being proactive in my health. I was taking their word for everything. I was allowing others to control how I was feeling and feeling guilty for feeling the way I was. I was depressed and down I couldn’t see how to get up. I was in the dark and couldn’t see until that day when the light came on. The light of support and help.

The relationship with my current Endocrinologist for the past year has been interesting to say the least. I don’t see her as the enemy. I see her as someone who is willing to hear my opinions, frustrations, concerns, and questions. She’s honest and doesn’t mince words which I respect because I’m the same way. She’s opening my eyes to certain aspects of this disease that I honestly hadn’t thought of or knew about. She seems to have a genuine concern for my health which in turn gives me more confidence to try other options in my treatment. No other physician I’ve had ever took the time explore other options. Well, the tides are changing quickly as we speak because I’m taking on an experiment with my steroid medication. I’ve been on steroids for 12 years. Without steroids, I would die so I’m steroid dependent and that’s a fact. Now, while steroids are my lifesaver, they are also my enemy because of the extensive list of side effects. One of the main side effects I experience is the Steroid Myopathy which causes muscle weakness in your limbs. The higher the dosage, the worse the effects. Hence, me using the cane for mobility. My arms also experience weakness to where at times it’s difficult to lift my arms above my head or hold objects in my hands for too long. My Endocrinologist is adamant that I lower my daily steroid dosage to a level I’ve never been at before much less entertained. I’ve survived at a certain dosage level for years and never imagined being on anything less because I didn’t think I could function. She stated that if I don’t try this, my steroid myopathy will only get worse along with my mobility and I could end up bedridden. Well, that’s not an option.

Knowing what I know now, I no longer go with the preconceived notion that any physician I see is the enemy. I have more of an open mind to give them the opportunity to share with me their professional opinion, diagnosis and treatment options before judging them. I can no longer allow myself to be my own worst enemy because that will hinder any progress in my life both professionally, physically and mentally. I’ve found that by taking the time to research, ask questions, look for answers, seeking out resources, and most importantly, asking for help, will make my life a little easier to manage. We need to be friends not enemies.

My mom’s go to knife is a big butcher knife. I call it a machete because it’s the biggest knife we have. It’s not a part of a set but stands alone. This machete will be used for anything from cutting tomatoes, vegetables, potatoes, buttering bread, stirring things in a pot and pan, and even slicing cake. It’s a “jack of a trades” kind of knife in our house. What’s amazing is that it’s always sharp. I always joke with her and tell her to put the machete down and grab another knife please! Seeing her use that one makes me nervous because she can be a little shaky at times. I’ve now even found myself using it too because the other knives we have are literally not the sharpest ones on the block. A memory of my grandmother De Los Santos came to mind recently. I remember her always being in the kitchen cooking for anyone who came by the house and she also would always have a big butcher knife in her hand for everything. She would be telling stories and laughing in the kitchen while waving the knife around in her hand. We would be ducking our heads to make sure we didn’t get caught in the crossfire! I’ve asked mom why do you use this knife? What’s your beef with the other knives? She just says she likes this one and is comfortable using it.

She feels comfortable using the biggest knife for the smallest task. In life, we go through struggles, disappointments, doubts, or whatever trial we face and we feel like we need to pick up our own machete and attack. I’m looking at one of the mountains in front of me and I’m starting my plan of attack. It’s looking pretty massive and intimidating. I can honestly say, I’ve never faced this mountain before. If anything, I’ve been avoiding it for years. Something tells me it’s time to face it. I’m starting to reach out to my Adrenal Insufficiency support groups and looking to those who have faced this mountain or are currently facing it now and wanting to know how they handled it. I’m wanting to know what worked or didn’t work for them. Give me insight people! Tell me the the juicy details! Throw me a bone! Well, as I hear more of their experiences, it provides both positive and negative feedback. I hear the advice of make sure you do this, make sure you don’t do that, don’t forget to do this, and you’re gonna face this obstacle, you’re gonna be denied the first time, second time, third time, it’s gonna take years to get accepted, blah, blah, blah. After hearing all this, I find myself looking at my own machete and thinking…I need a bigger one! Go big or go home!

So back to the drawing board and Amazon looking for a bigger machete. The biggest badass machete I can find (that’s Amazon Prime 2 day free shipping) because I need it fast! I wonder if comes in a set? So much energy goes into the planning of attack that by the time you go to battle, you’re gonna be wiped out and not going to have the strength to continue. Then no matter how big your machete is, you’re not gonna be able to fight. Sometimes clarity can come in when we’re at our most vulnerable. If you’re listening, there’s a voice that will speak to you. Everyone has a voice that speaks to them. That voice of reason or your conscience. The voice that speaks to me is God. He’s telling me to stop planning my attack. He’s telling me to give up and let go. Stop listening to the outside noise of other’s opinions and advice. I need to trust Him. Put the machete down.

My mind can go a thousand miles a minute on a daily basis and I’m constantly trying to sort out my job situation, ideas, thoughts, worries, stresses, etc and at the same time being present with mom and dad. It’s important to me that I’m not just “here” with them but Present with them. I’m learning more and more about them each day and it’s helping me put pieces of my life puzzle together. I’m here to help take care of their basic daily needs, house maintenance, conversations with their physicians, staying on top of their prescriptions, trying to be their extended arms and legs when they need it. I find peace in helping to look after mom’s plants and feeding the birds and filling their birdbath in the backyard. It’s a blessing when you find a purpose and know where you are and what you are called to do.

I’ve never been one to post reviews on products, services, or companies before until only recently.  I’ve only had to do maybe one or two that were not good but for the most part, I try to post reviews that are good and where I receive the above and beyond customer service.  I try to always make a point to say “thank you” to the drivers of the VIA transportation service that drive me around, to the VIA staff members who help schedule my rides, Uber & Lyft drivers, to the people who assist me anywhere from the grocery store to the physician’s offices etc. It feels good to say thank you and I would like to think it feels good to receive a thank you.  
After my separation from my ex, I came to a point where I remember writing in my journal “thank you” because he left me and looking back it was one of the best decisions for both of us. We had a 14 year relationship filled with love, hate, respect, laughter, disappointment, blood, sweat, and tears. He was in my life for a reason. I truly loved him and despite how things turned out in the end, I’m thankful for that opportunity of having him in my life. 
One of my previous supervisors used to periodically say thank you to all his employees. He would go around to each one personally and say thank you and always asked how we were and if there was anything we needed, he was there. That thank you I often received stayed with me.  It stayed with me because it showed me that he appreciated me and valued me as an employee.  Once that supervisor left, those two words of thank you also left.  For me, it was replaced with who are you and remind me again of what do you do here, constantly being reminded when mistakes are made and not offering advice on how to correct the mistake, suddenly your integrity and loyalty are being questioned, and your job being made more difficult each day due to unnecessary stress and pressure. Wow, how do you deal with going from thank you to this?  At the time, I was wondering to myself if I was in the twilight zone. Is this really happening?  Is this just me?  Yes, it was really happening and no, it wasn’t just me.  You start replaying previous conversations in your mind and you start to ask if any of that was real.  Was the praise I once received from this individual from the heart?  All those times we would laugh, carry on, and have fun at work was that real? I confided in this individual and vented to them about my frustrations from certain aspects of the job and what I felt was wrong with the system.  I appreciated how I could be honest with them. They would correct me when I was wrong and if I was in the right, they would agree and encourage me.  They always had my back no matter what and I respected them for this.  Then literally from one day to the next, everything changed.   I remember the specific day when a speech was made and I could tell immediately by the tone that something was definitely different and things were changing and not for the better. It appears that when certain individuals get more power, it goes to their head.  It suddenly changes them and their personalities and how they treat people.  I was shocked, hurt, angry, and disappointed that this person whom I respected and looked up to was no longer the person I knew.  They were unrecognizable to me.  
After this chapter in my life ended, I wrote in my journal “thank you”.  I had to let go of the bitterness and hurt I was feeling and I had to forgive them in my heart. I was thankful that this situation happened because it lead me to the realization that the job was no longer worth my health.  For years, I had been placing the job first and my health and quality of life second.  My health issues were becoming more serious and I could no longer afford to do this.  This period of my life was challenging, rewarding, difficult, a learning experience, and filled with blood, sweat, tears, and yelling at times, but I loved my time there with all my heart.  I made the decision to walk away and it was on my own terms and not anyone else’s terms. I’m proud of that. 
So the journey continues to be thankful each day for the good and the bad.  
Thank you.  

I’ve never shared this before other than attempting to explain in words of what my vision is like. This is my recent visual field exam results in color. The top is my right eye and the bottom one is my left eye. The yellow portion of each is where my vision is which lies along the bring of my nose. I have to remind myself that the “world” I see is much bigger than what my vision reveals. When I walk I have to look side to side up and down so I’m not missing anything. It’s easy to walk through life in this way with any type of vision. What you don’t see doesn’t exist. Who you don’t see don’t exist. It’s a lonely way to live but it’s easy to fall into. Over the past year, I’m learning and still learning that it’s not only about me anymore. In this journey, it’s much bigger than me. Open up your eyes, you’ll be amazed at what you see!

I’ve never shared this before other than attempting to explain in words of what my vision is like. This is my recent visual field exam results in color. The top is my right eye and the bottom one is my left eye. The yellow portion of each is where my vision is which lies along the bring of my nose. I have to remind myself that the “world” I see is much bigger than what my vision reveals. When I walk I have to look side to side up and down so I’m not missing anything. It’s easy to walk through life in this way with any type of vision. What you don’t see doesn’t exist. Who you don’t see don’t exist. It’s a lonely way to live but it’s easy to fall into. Over the past year, I’m learning and still learning that it’s not only about me anymore. In this journey, it’s much bigger than me. Open up your eyes, you’ll be amazed at what you see!

I’ve never been one to post reviews on products, services, or companies before until only recently.  I’ve only had to do maybe one or two that were not good but for the most part, I try to post reviews that are good and where I receive the above and beyond customer service.  I try to always make a point to say “thank you” to the drivers of the VIA transportation service that drive me around, to the VIA staff members who help schedule my rides, Uber & Lyft drivers, to the people who assist me anywhere from the grocery store to the physician’s offices etc. It feels good to say thank you and I would like to think it feels good to receive a thank you.  
After my separation from my ex, I came to a point where I remember writing in my journal “thank you” because he left me and looking back it was one of the best decisions for both of us. We had a 14 year relationship filled with love, hate, respect, laughter, disappointment, blood, sweat, and tears. He was in my life for a reason. I truly loved him and despite how things turned out in the end, I’m thankful for that opportunity of having him in my life. 
One of my previous supervisors used to periodically say thank you to all his employees. He would go around to each one personally and say thank you and always asked how we were and if there was anything we needed, he was there. That thank you I often received stayed with me.  It stayed with me because it showed me that he appreciated me and valued me as an employee.  Once that supervisor left, those two words of thank you also left.  For me, it was replaced with who are you and remind me again of what do you do here, constantly being reminded when mistakes are made and not offering advice on how to correct the mistake, suddenly your integrity and loyalty are being questioned, and your job being made more difficult each day due to unnecessary stress and pressure. Wow, how do you deal with going from thank you to this?  At the time, I was wondering to myself if I was in the twilight zone. Is this really happening?  Is this just me?  Yes, it was really happening and no, it wasn’t just me.  You start replaying previous conversations in your mind and you start to ask if any of that was real.  Was the praise I once received from this individual from the heart?  All those times we would laugh, carry on, and have fun at work was that real? I confided in this individual and vented to them about my frustrations from certain aspects of the job and what I felt was wrong with the system.  I appreciated how I could be honest with them. They would correct me when I was wrong and if I was in the right, they would agree and encourage me.  They always had my back no matter what and I respected them for this.  Then literally from one day to the next, everything changed.   I remember the specific day when a speech was made and I could tell immediately by the tone that something was definitely different and things were changing and not for the better. It appears that when certain individuals get more power, it goes to their head.  It suddenly changes them and their personalities and how they treat people.  I was shocked, hurt, angry, and disappointed that this person whom I respected and looked up to was no longer the person I knew.  They were unrecognizable to me.  
After this chapter in my life ended, I wrote in my journal “thank you”.  I had to let go of the bitterness and hurt I was feeling and I had to forgive them in my heart. I was thankful that this situation happened because it lead me to the realization that the job was no longer worth my health.  For years, I had been placing the job first and my health and quality of life second.  My health issues were becoming more serious and I could no longer afford to do this.  This period of my life was challenging, rewarding, difficult, a learning experience, and filled with blood, sweat, tears, and yelling at times, but I loved my time there with all my heart.  I made the decision to walk away and it was on my own terms and not anyone else’s terms. I’m proud of that. 
So the journey continues to be thankful each day for the good and the bad.  
Thank you.  

My mind can go a thousand miles a minute on a daily basis and I’m constantly trying to sort out my job situation, ideas, thoughts, worries, stresses, etc and at the same time being present with mom and dad. It’s important to me that I’m not just “here” with them but Present with them. I’m learning more and more about them each day and it’s helping me put pieces of my life puzzle together. I’m here to help take care of their basic daily needs, house maintenance, conversations with their physicians, staying on top of their prescriptions, trying to be their extended arms and legs when they need it. I find peace in helping to look after mom’s plants and feeding the birds and filling their birdbath in the backyard. It’s a blessing when you find a purpose and know where you are and what you are called to do.