What more can I say but what a day yesterday and what a night, no eating no sleeping my life has really been a mess the only thing I’ve kept organized is my work amazingly. After that I just seemed to be drained of all energy whenever I start to try and work on a hobby I just never have the stamina for it. I mean I have models half built, mining field trips still in the planning stages(enjoyable because its a hobby that pays itself off if you know enough), and I have stacks of books piling up to read and/or review. I just feel like i’m constantly running into more medical issues despite all my best efforts and being the most cooperative patient my doctors have ever met at least with such painful illnesses and them all being what we in the patient community call “invisible illnesses.”
Yesterday I was in extreme pain from the time I awoke however things really took a turn for the worst when we went to the urologist. No he didn’t have bad news for us or perhaps he did I’m not sure we never waited for the appointment about half an hour through our wait I started feeling an odd sensation, a painful throbbing feeling under my jaw which made me think it might be an inflamed gland but cannot find one. More importantly I felt the same severe chest pain in the same lung they found inflammation or glass ground opacity and 2 newer lung nodules that are deemingly coming back despite my chemotherapy that had removed the last grouping of 6 small nodules. These 2 are small as well but instead of restricting my breathing like last time I’m having trouble breathing and a hell of a lot of pain in my left breast. In fact my mother an RN as many of you already know will be working today and will be getting me an appointment for today to see my primary care physician whose a family friend ASAP, my father will end up bringing me to the appointment. I just hope everything is ok because I am overwhelmed as it is and let me explain why.
Along with my ever increasing pain comes an ever increasing workload perhaps I am insane but I am now working 4 non-profit jobs and 1 paid opportunity which takes very little of my time but doesn’t come anywhere near paying any medical bills. Heck I work 15+ hours a day and I can’t even pay for my most expensive prescription sadly. I hope as all the organizations and companies I’ve helped to develop move on one will appreciate all of my hard work and pay me a salaried position once I have my masters in public health. I’d personally love to be able to afford the therapy I need to feel good enough to give more talks both free and paid, start a community support group which is already in the works, write more which I have been doing as a journalist for Axon Optics, and someone who is a young public face for chronic pain and illness.
In fact that’s something I want to focus on putting together a more youthful team of advocates, young people whose minds are ahead of their bodies, people who have matured like me out of necessity rather than age. Therefore we can give the same advice as our older counterparts but we use more technology, have more energy, and are certainly more enthusiastic to move projects along with a realistic timeline. What I found working with older advocates is that they are allowed to work especially under the influence of a chronic illness, they often have trouble keeping up with our pace, they are very resistant to new technology or complex web design, and they often demand respect from younger people they refuse to earn it at least in my own experience. I mean plenty of advocates have worked 10+ years without any media contact or public talks or going to a conference, heck after all that time MANY advocates still use a free cheap looking website no wonder the public doesn’t take us seriously. I’m not saying you need $5000 into a website and SEO out the gate, but I am saying if you see this as a career even just a temporary one you need to make yourself look professional and credible. I’ve done all 3 and the last 2 were paid for by the people who I was working with and I’ve only been doing this 9 months. That shows me a lot of change can be made in a short period of time these diseases just need more attention and more relevant advocates. I’ve also realized the movement need true writers, people like myself who can churn out 2-10k words in a day working on several books and at least 2 articles a day when I’m up to it. I’m certainly not going to make myself sicker due to a hobby that’s why my website traffic fluctuates so often some weeks, that’s typically when I am far too sick from my terminal vasculitis to work, days my fingers are too swollen to work or something like that. I don’t often complain and when I worked I didn’t really call in sick, that being said I’m a hard worker and I don’t like failing my readers when I can help it.
I also wanted to mention that some advocates refuse to be open to new ideas or new friendships. Unfortunately this advocacy thing is very political even for disease where few advocates even exist…everyone seems to be competing for a paycheck. However we’re supposed to be acting in the best interest of the patients not looking for a job by doing this, yet still so many advocates and people within the industry make this a struggle for greed, guess what those people don’t care about the patients. Those are the kinds of people who would step on a fellow advocates throat and watch them suffocate rather than lend them a hand and miss their one chance at getting some insignificant pay. Hell I just started a patient-centric business but we don’t expect to make money just have enough to pay some medical bills and pay our taxes. I should’ve probably started it as a an NPO but in my opinion there are too many out there already for most conditions and just like the individual advocates they refuse to come together even though it would benefit the patients nobody in this community except a slight few have their ego in check. In fact most of them are so bloated you’d think they’d won a Nobel Prize or are celebrities. At the last NPO I worked for the owner was more obsessed with becoming a celebrity and media opportunities that he/she didn’t know how to deal with rather than patients. Instead of doing anything for the patients they spent the first multiple thousand dollars they raised on merchandise….brilliant right that’s exactly what someone in chronic pain need cheap t shirts and wristbands made in China right?
Anyway now you know why I do not and will not work with any NPO that I don’t know well. I also know not to be flattered by “big names” anymore because most of them are big nothings and aren’t half as outgoing as me or the people I will be hiring to work for me. No I will not name this NPO because I don’t want to start drama I’m just speaking to new advocates you’re better off on your own if you have the drive and energy to write each day. If not sure join an NPO just don’t take on any positions until you feel you really know the people surrounding you. What I thought was a real opportunity turned out to be one of the worst workplace experiences of my life. I didn’t have 5 jobs when I was with them I was doing all the work so I could barely handle that 1 NPO and my own website. Now that I work for proper organizations I maintain 5 jobs under stress but I can handle it all even with all of my pain and medication and hospital visits. I really appreciate you all reading this and I hope if you’re new to the site you’ll take some time to browse and see what I have to offer!