I cannot continue to let pain defeat though the last few days it has so successfully. I will admit for once I deserved the break though because I feel “normal” sick like perhaps I have the flu or something on top of all the chronic illness and terminal illness. However nothing has shown up yet though it is odd we’re still finding blood in my urine even after my surgery so that too is cause for concern. My breathing also continues to worsen as it did last time I had the lung nodules and I am afraid for my life now as last time I felt I came too close to death. Lastly I continue to gain weight despite barely eating and vomiting most days, I typically have 1 meal a day and sometimes I vomit that up too so sometimes nothing. Yet in the past 2 weeks due to all the medications side effects I’ve gained another 10 lbs. I am now 270 lbs which is all in my gut, it’s quite disgusting and makes it hard for me to find clothes that fit any longer. I still have enormous stretch marks everywhere from the rapid weight gain. It’s as if we must go shopping every other week quite embarrassing to anyone, especially someone who prided himself on never having been overweight in his entire life despite a love of sweets.
I must try and ignore that which frustrates me though and continue on writing both for me and for my readers. I’ve found the battle to be ferocious mentally and nearly impossible physically as I continue to wake up in more and more pain each day to the point where a few weeks ago I declared to my family and friends I am now living at a constant pain level of 9 which may seem unimaginable and it is….but it is possible for someone going through the situation. At this point I can confidently say there are less than 1000 people in existence experiencing my level of pain and very few cope with it well enough for their story to ever reach the public. That’s all that motivates me to keep on speaking because I don’t think some of my illnesses really have a voice for them at all and if so it’s a weak one. So I’m here to make people like myself with rare illness, terminal illness, and invisible illness especially heard. I plan to try and make appointments in Washington D.C. not only with the organizations that go to Headache on the Hill but also on my own to talk to my representatives about the current state of health care, medical education, and patient treatment in the USA and how it compares to other services worldwide.
In fact I plan on asking all of you to help me, most features on my new website won’t be available right away but the first member survey will be up fairly quickly. I need the biggest response possible to all of these in order to help tailor my content to what my audience wants, to find out who you guys and gals are, and to provide solid statistics to all who are interested in knowing more about our community. Luckily in the future I’ll have some volunteers writing here so you will be able to follow the stories of the lives of several patients and as the site moves on in terms of revenue we shall gladly expand the conditions covered and there shall be surveys for that too we plan to allow the patients to run this website as much as we can. As you all know the website will be available at some point this September so keep an eye out for it. I also plan to find someone to run social media for us so please contact me if you’re interested in blogging your chronic illness once every 2 weeks/biweekly or if you’re interested in running our social media on a trial basis.
Anyway I am back as I mentioned my pain has been terrible I’ve essentially been sweating wrapped in a blanket whilst sleeping ¾ of the day the past 3 days which is why I say I am sick now. I normally sleep 1-3 hours due to my chronic pain as many of you know. I just hope my migraines calm down or this flare stops soon I just need some slight relief! My mind just isn’t working in this flurry of agony I need to escape even for just a few days. Perhaps tonight I’ll take my laptop upstairs and work from bed all day tomorrow so that I can write several articles and get ahead. Oooh I should let you all know I do play Xbox One again now thank to my outdoor tinted Axon Optics glasses I can finally tolerate it when I wear the Bora’s which also block peripheral light. Lately I’ve been playing racing games but I’m considering getting an NCAA football game and perhaps some sort of simulation game or something I really haven’t kept up with what’s coming out as I hadn’t been able to use the darn Xbox for anything but Netflix and Amazon Prime Instant Video. So that has brightened my life a little despite my becoming more sick and barely being able to write. Don’t get me wrong I haven’t played much maybe 5 hours the past week but it feels good to be able to do something somewhat normal even if I have to sit in a dark room with super dark lenses on top of it just to tolerate it. In other good news we’re getting a TidalFit which I will review so I will soon develop an opinion of how aquatic therapies work for neuropathy and vasculitis to everyone. Personally other than losing weight I think it’ll stimulate me a lot and I will feel more energetic the more I exercise in it. It won’t be cheap though the family is coming together to pitch in money for this one as it’s a $20,000 device not to mention the increase in electricity bills and the enclosure that we will have to build around it so that it can be used year-round.
This is the first time in days I’ve actually enjoyed what I’ve written and I think you might be able to tell by the size of this article and the wording. I truly wanted to say thank you and that I am back I will try to write about any future breaks before having to take them! For now though I am just happy to be back to typing! Honestly hope you’ve all enjoyed this article both as a life update and a more detailed account of how I plan to come back. I think the TIdalFit will be key to my physical recovery and allowing me to continue writing every day. Heck for all that money I sure hope it’s well worth our investment! Thank you all for reading and staying with me through my short break due to illness. I’ll try to make those as infrequent as possible at least trying to make videos if I cannot type in the future!