It’s been a while since I last published a podcast or wrote an article. I’ve always wanted Living Chronic to be helpful. I want it to be something that chronically ill patients and their family and friends can turn to for help, understanding, and possibly a way forward. I’ve struggled to be the positive person I want to be. I started Living Chronic to work through some very difficult struggles and the depression and hopelessness that often accompanies chronic illness, as well as the life changes it brings with it. Over the past year, I’ve learned that I’m not the only one who struggles. This is difficult for everyone, and it isn’t a short race with a finish line. This is a series of twists and turns and small victories then big setbacks. I’ve had a big setback and I need to take time to try and get through this. One of my biggest hurdles to overcome has been my inability to be vulnerable. I’ve always been the type of person who shows no weakness and wants to do everything by myself. I really had to dig deep to show my vulnerability and ask for help. I reached out to find mental health assistance because I just couldn’t do it alone any longer and I knew I needed help. A part of my recovery has been returning to a fulfilling career. I started a business to enable me to continue working through my Crohn’s disease when it was so bad, I could barely stand up. Unfortunately, I have hated my job since day one and it never grew on me. I found fulfillment in my athletics, running marathons, and competing in half Ironmen races. Unfortunately, I lost that ability to run and compete in triathlons with the reaction to my Humira. It made sense to find fulfillment in my career again now that my Crohn’s is in remission. I’ve really done so much this year to go against my own nature and reach out to people and ask for help, ask for recommendations, and let people know I’m working hard to make some changes in my life. When you’re in therapy or watching a Ted Talk, vulnerability is the key to opening your life. People will embrace you and help you when you show your vulnerability. This isn’t what I’ve found at all. As a matter of fact, some people have been downright rude and frankly, mean. I’ve really done my best to have thick skin and keep picking myself up again, and again, and again. I can only pick myself up so many times. I picked myself up when my Crohn’s took my life as I once knew it. In 2017, the disease became so severe I could barely leave my house and completely lost my ability to run because it caused severe GI pain and distress. I picked myself up after that and spent 2018 getting my fitness back, ready to start competing again. I was training for Ironman Chattanooga 70.3 when the reaction happened, and I’ve been doing everything possible to pick myself up again. I worked to pick myself up after losing my ability to walk and having severe muscle pain, loss of balance, and brain function. I’ve battled daily to try and get some level of running back. I worked on memory exercises every day to get some brain function back. I’ve stood in the face of rejection and held my head high. I’ve worked hard to research my own medication reaction and work through my representatives to do something about the FDA and their broken system. All these things take so much fortitude and you get more rejection or even just ignored far more often than you get anyone to simply acknowledge your problems or goals. I’ve had a few moments where I just didn’t think I could do it anymore. The first was when I reached out to an acquaintance about jobs in a specific field. He flat out told me I should have accepted a position that I had recently turned down for offering me a salary $60,000 less than my base salary 15 years ago because he just didn’t see me getting anything after being an entrepreneur for 10 years. I tried to dismiss it because he is genuinely the most misogynistic man I know, and narcissistic to boot. But it was an event that broke me down a bit. There have been no shortage of terrible comments; you don’t want to be one of those kept wives? Why not just apply for disability? I kept my chin up as best as I could until a few weeks ago. I reached out to a contact I have at Visa to ask about a job that was a great fit for me. I received a quick response that was frankly so rude and nasty, it made me not want to ever ask another person for help again. A short 3 hours after that incident, I had a phone call with the VA that was equally rude and the final dagger in my heart. To keep it short and sweet, I was told I was too disabled to do anything and basically, I should give up. I’ve been ready to make that call to Dignitas for a long time but my husband, whom I love, has pleaded with me to keep trying to get my life back. That day really felt like the final nail and when even the VA tells you to give up, it seems like the only answer. I’m struggling and I just don’t know how to pick myself back up again. This is why I decided to end Season 1 of Living Chronic with my last episode and come back to Season 2 when I can find some strength and resolve. I have surgery scheduled for tomorrow. After a year of constant, continuous sinus infections, I’m hoping a 2nd sinus surgery will give me some quality of life back and maybe some time to find a bit of strength to stand up again. I don’t know what the real takeaway from this article is. Maybe to be more kind when someone asks for help? I’m not sure I have enough faith in humanity right now to make that suggestion. I certainly don’t advise being vulnerable right now. Maybe the right answer is for the disabled community to rally around each other. I’ve considered starting an employment agency focuses on disabled workers. Unfortunately, right now what I really need is some time to heal myself and find my resolve again. So maybe, the real takeaway from this article is, take time for yourself. You don’t have to be strong every day or even stop yourself from crying or admitting you’re a little broken. It’s not easy to put yourself back together when you’ve been smashed and glued back together so many times. Take your time and help you.
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