So why the title cryptic title huh, well it explains the past few days of my life and the struggle I’ve gone through to even make it to this very day. Lately I’ve been feeling extra sick, like I picked up a virus or the flu or pneumonia. I don’t see how I got sick someone must’ve brought something home from work because I literally haven’t left the house since we got back from the Mayo Clinic, actually I think since we had the ramp installed we’ve been to a doctor’s appointment, but that’s about it. Trust me I’m not logging on to my computer everyday and saying crap I don’t have the energy to blog, I am involuntarily sleeping late and waking up feeling like I was hit my a bus, not having even touched my laptop as of late most of my activity I’ve maintained has been via my iPhone which at times like this when I am curled up in bed in agony is a godsend as I can access support and still manage to support others. Just as it’s important for Caregiver’s it’s imperative that patient and healthcare advocates really take care of themselves something I’ve neglected to so at times and it has hurt me greatly at times when I could’ve avoided the extra agony and stress which my body certainly didn’t need.
What the title of this article truly means is that I’d like to be able to just forget yesterday and my failures, all the bad days, and all that depresses me. However that’s just not reality and lately I feel I’ve been facing up to that pretty well in fact I even canceled my psychologist appointment due to a horrible pain day that started with a Cluster Headache. All my symptoms and side effects from the medications used to treat them seem like a merry-go-round of pain. For example I am told to brush my teeth with Sensodyne toothpaste yet that causes me great pain because of how sensitive my teeth are at times due to all my nausea and vomiting, and I am told not to brush immediately after vomiting because that too will damage the enamel. Another example of a double-edged sword situation is when I’m having a migraine of some sort or cluster headache and I need a pain-killer for my bodily pain because it’s getting out of control, do I risk taking a pain-killer and possibly exacerbating the headache disorder for some slight comfort, or do I tough it out knowing things probably won’t deteriorate further? It’s choice like this that make me sick why aren’t we investing less in warfare and more in the healthcare industry in this great country of ours? Heck we could sell one tank, plane, or helicopter and have the budget for several decades more headache disorder research with higher budgets than currently exist. Doesn’t that say something when 37 million plus Americans suffers from an illness that it’s an unrealized epidemic? Here’s one more example of how my treatments are a pain to me at times, I try to use O2 or 100% oxygen through a non-rebreather mask but the air comes out so cold that once again I have the same issue with my teeth they feel like they’re encased in ice so how can I get rid of my cluster headaches when I can’t use the abortives and the O2 now introduces additional pain into the mix. Anyone with cluster headaches will tell you they wouldn’t wish it upon anyone, not even their worst enemy and to add any pain to it even a common cold is enough to take you over the tipping point, that’s why some people need to be held down at times and why they call these “suicide headaches” as a nickname. I’d prefer they make suicide headache the real name as it implies something dastardlier than cluster headache, which people misinterpret often due to the stigma attached to invisible illness.
My life lately has been full of struggle and change, a lot of it, in fact so overwhelmingly so that I haven’t gotten all of my work done lately though I’ve been fighting to! I’ve never started a business nor known anyone who has so I don’t have a mentor for my startup. I’m going off of the two business courses I took in college and am just now beginning to appreciate how far into the future it’s realistic to plan for. What can be done earlier and what can be done later, hiring and firing people, and most importantly staying on time as well as on budget. My time management has also become a lot more impressive as on my last good day I managed 18 hours straight of pure work until I passed out from exhaustion whilst working on my business plan. The business isn’t all I have to talk about though I seem to have gotten myself involved in many projects all at once. One of the more complex and overwhelming projects is a podcast, which I am hosting along with my Co-Host Dawn M. Gibson. We are currently seeking sponsors and defining our ideas for segments as Dawn waits for her microphone to arrive. Our new podcast will be something targeted at those stuck in the hospital, in bed, or confined to their homes. When these patients have been inpatient for a while or have been without a visit from family or friends things can seem rather grim, and depression soon sets in, we aim to combat this by giving these patients voices to listen to and interact with over time! We plan to have a professional voiceover done for our intro, outro, and as a requirement for all advertisements for both sponsors and non-profits that want more exposure.
Not only have I been busy with my own projects but also I recently judged the WEGO Health Activist Awards and I continue to serve the Vasculitis Patient Powered Research Network as a Patient-Partner in their Vasculitis Patient Advisory Council! I consider both these recent jobs to be very beneficial all around as we all have something to gain from our benevolent work on the behalf of both the Vasculitis Foundation and the Vasculitis Clinical Research Consortium. I was honored to judge the very same awards I won last year as Rookie of the Year and the fact that they asked me to judge it this year really makes me feel special and like I’ve achieved something special once again. Other than that my condition has continued to worsen ever since I got back from the Mayo Clinic in Rochester. I had an appointment with my PCP today and he’s quite outraged with them and how much time they’re taking to get my information together to send to him so we can begin developing a treatment plan locally all over again since nothing was done there. Thank you for reading it took a lot out of me to write this and my fingers look like sausages now! I’m going to rest and then get to work typing some articles that may be of help to some of you tonight for release early next week. I find that with my level of fatigue I really do need to get ahead of my work or else I have nothing for my readers on days and during whole weeks where I can’t produce anything of substance for you to enjoy. I will continue to fight this thing as long as you all are right along side me helping me to stay strong!