I’ve been going through the worst one of my life getting increasingly worse for several weeks now. Vasculitis flares come and go as they please unfortunately and while one is in one life can be extremely difficult especially if as like I am right now you are on one or more type of chemotherapy. I am getting rituximab and CellCept whilst awaiting my Mayo Clinic Appointment; Lets get into really describing what’s so hard to tell my family.
I have cluster headaches; I’ve had a 10/10 and cleared the 40 LPM bag which is A LOT of O2. I can say this is like a full body cluster except it won’t end and there’s nothing in this world that can help me I just sit and cry and punch my chair and ask why. It feels as if fire ants are eating EVERY nerve in my body like surge of lightening and I’m not talking that tingly feeling this is agonizing. Then there’s the loss of the use of my legs which could be steroids but every day that passes is a day closer to confirming it could be the vasculitis or neuropathy as well. This means I have to be helped with everything and like a child I cannot be left alone unless my wonderful fiancé is here. It also means someone needs to drag me to the commode or toilet. Or help me into bed or onto the couch or get me food…dam nit my family does everything I’m useless that’s why I must become a real journalist and start working more online. But back to the flare it includes swelling and lots of it with fluids in all of your joints your knuckles will look like mini golf balls it’s quite disheartening to a writer who isn’t’ familiar yet with how to use Dragon text to speech software.
A little bit of writing isn’t the least of your worries though the rashes that cause you to bleed all over your mother’s new set of sheets is an issue. I feel like an animal my arms bleeding at will these rashes popping in my sleep and me waking up to the pain of the opened up wound rubbing against my blankets, it feels like a large barbed fishing hook being roughly pulled out of my muscles and skin. The rashes they leaves are reminders of the suffering and are permanent, they are round and make you stand out I hate them all and if I was a well established writer or business owner I’d get a tattoo over them to make myself less aware of them and more aware of staying optimistic. How can one do it though when watch touch of the skin is painful every key I hit is a small surge of pain for me. It’s called allodynia and it comes with the severe daily migraines is what I suppose. The vasculitis rashes definitely make it 1000’s worse on my arms though and now my lower back, private areas, and thighs. I have over 45 new rashes at the height of this flare many of which have opened or just gone away or are still growing. I am hoping some are still active for the mayo clinic to see I’d hate to endure all of this agony for nothing beneficial. I literally feel like a pincushion except for needles and scalpels.
I sure hope they make a vasculitis specific medication soon I am sick of repurposed medications and hoping they will work. Just because it works for most isn’t good enough we need options that cover ALL patients. A cure would be nice and I will put funding towards one but it isn’t likely to be something we see in our lifetime. I would happily settle for remission so that I can work hard in physical therapy, get back to they gym. Then get back to the beach with my wonderful dog as a guide dog and Venus as my loyal fiancé and caregiver. My Mother is my true caregiver since she’s an RN but Venus does pretty damn good herself being premed when she was in college, I love it that the two women in my life are kind and caring, they love helping others and can’t stand to see me sick it breaks their hearts. That’s why I hate Vasculitis flares they prevent me from doing anything really for weeks on end. They seriously effect my ability t blog, do interviews, and continue to finish writing my books. I am fighting this flare with all my might as you can see writing whenever I am not too swollen or in too much pain to see. I love my readers and I appreciate every one of you please share my blog with other health advocates, bloggers, spoonies, others with chronic illness, friends and family of those with the illness, writing agents, publishers (2 upcoming books- 1 poetry, 1 fiction), health magazine editors, radio health program hosts, and others who you think might be able to further my advocacy career. I don’t ask for money I do ask for respect of my illness and knowing that we may have to set a rain date for certain things if possible. Thanks again loyal readers please email me at firstname.lastname@example.org if you want to get in touch about all opportunities; all advertisements will be sent to the spam box, all form letter will be sent to the mailbox. I want mail from genuine fans and people interested in what I do and I’d be glad to give interviews or talk for free if I can afford the travel!