Today is a rare one I woke up without a headache of any kind due to there being no pressure changes and I suppose sheer luck. I am enjoying it by watching a television show about the early universe and the Higgs Boson on the Science channel. I am also petting my dog since the loyal little bugger loves to sit next to me in the morning. I don’t take being out of pain for granted I look to enjoy the little time I have utilizing my entire mind and being able to think freely. I am not completely out of pain though, I am still experiencing what’s called a Churg Strauss flare and today I’d like to describe one to you since I now know this is the only pain I am in at the moment.
It’s an odd feeling for me to wake up with a small headache or none at all. I am now feeling an inkling of the throbbing and stabbing so perhaps I was wrong maybe I just have a high enough pain tolerance to disregard anything below a level 5 in my head. Anyway back to the whole point of this article the infinitely rare Churg Strauss Syndrome which is a 1 in 1.5 million diagnoses and its flare ups. You see when Churg Strauss flares up a whole lot can potentially happen to one’s body. You might even fall asleep one night just fine and wake up the next day or in the middle of the night struggling to breathe, gasping for any air you can get. That was me several months ago around the time I was diagnosed. Lung nodules or small lung infiltrates caused me severe pain and I woke up several night barely able to breathe before I was finally brought to the hospital and admitted. Even 8 nebulizer treatments couldn’t stop this particular flare up, what was needed was a type of chemotherapy (yes there IS chemotherapy for vasculitis) called Rituxan. Luckily for me this was just enough to get my breathing back and Rituxan has very few side effect compared to its counterparts.Not only that but one can wake up without use of certain limbs, lose all your sexual drive, have low or high hormonal levels and a heck of a lot more. Churg Strauss truly is one of the worst autoimmune diseases in existence.
Today I am explaining what a Churg Strauss flare is capable of I’ve already explained the effect on the lungs and my experiences with lung nodules which have come back lately. However Churg Strauss affects a whole lot more than one’s lungs but all your organs including the skin and it can also affect one’s blood. I am awaiting the results of my bladder biopsy but the inflammation of the left wall of my bladder may have also been this devastating vasculitis acting up and causing me to urinate frightening amounts of blood. Other than the severe inflammation of my bladder wall which required surgery to remove and the 8 lung nodules i’ve had I can only really blame Churg Strauss Syndrome for a few more things. One of them being severe allodynia or skin sensitivity. As I mentioned Churg Strauss affects all of one’s organs and that includes the skin which many don’t recognize as an organ due to a poor education. Churg Strauss messes with your external senses or somatosensation as some know it, skin sensitivity is also recognized by the name allodynia. We all hate pain and that’s essentially all that this terrible and unfortunate invisible illness brings with it, all it brings in fact is intractable pain, other autoimmune conditions, and the slow but painful deterioration of one’s body.
During a Churg Strauss flare you are in slightly increased pain and can feel everything heck even the air being moved by a fan is enough to cause you pain in both your eyes and skin. One is also very irritable and subject to mood swings which is one of the worst mental factors of this condition in my opinion. Whilst in a flare though one feels many things headaches are amongst them but for me it exacerbates both the amount of and pain level of my daily chronic migraines and cluster headaches. In fact it has brought my clusters from 1-2 a year to 5-10 each week. Now that’s serious pain on top of my Churg Strauss flare and my other illness which is neuropathy.
How do you deal with this pain well you really don’t even opiate medications have very little effect and the pain is so great that 2mg of Ativan doesn’t do anything to me at all the same goes for 80 mg Oxycontin every day twice a day the stuff doesn’t help not one bit. Normally people would consider those strong painkillers but they’re the same as sugar pills to me and that’s why I hate even taking them though my doctor has asked me to continue so I will for now. Anyways I just had to vent today and explain why sometimes my pain reaches a point where I can no longer write, the inflammation gets so bad I cant get my fingers to move and hit the correct keys. I appreciate your time and concentration in reading this article, I truly hope it brought you into my world at least a little bit. Thank you for your time and please enjoy your day it’s beautiful here in New York today quite breezy and sunny outside. That’s why I typed this sitting under an umbrella at the table just outside my house, even the severely disabled need to get out sometimes.