I was asked a question about remission and CSS in a FaceBook group and I’d thought I would re post my answer here so everyone could see it — it may not be the popular answer and I base my answer on my research and personnel experience and those CSS patients around me who I have the privilege to know for the past 8 years.
As a precursor to this answer I have to say I believe acceptance of having a Vasculits and autoimmune disease is VERY, VERY hard. When I was first diagnosed I fought it.. kicking and writing… I read but did not listen to those with more experience who preached their quiet acceptance of CSS… I hated them for accepting being on pred for the rest of their lives. With time comes clarity and understanding. so here is my answer to the question about my views on remission.
My views on . “time to remission” may not be what people would like to hear. In personal experience, I have had CSS symptoms for 8 years now and was Diagnosed 7 1/2 years ago.. I have NEVER been in remission…. Because I am considered, ‘highly refractory’ I may never be in remission… So I may have a rather dark attitude toward the term remission.
Too many Vasculitis patients consider remission to be off all meds (especially pred) and that just isn’t the realistic case in most patients — Most CSS patients will find they need a daily maintenance dose of prednisone to keep their illness from flaring (a maintenance dose of prednisone is considered anything under 10mg from my understanding). Inflammation of our vessels is the danger zone we live in — prolonged, uncontrolled inflammation will cause permanent damage to blood vessels which in turn causes damages to organs. After years of fighting prednisone and some of my other meds I have finally accepted the fact that prednisone is NOT my enemy — it is my savior… Without it or with insignificant amounts of it I would have major organ and maybe irrecoverable organ damage.
My doctors have always ‘hit’ my CSS with large amounts of prednisone to quiet the inflammation ASAP so it did not cause any organ damage. I have been on 80mg and more of prednisone more times than I care to remember. Remission is a word I really do not like anymore…. I prefer the term of quiet… under control…. no active inflammation at this time. I resent the fact that when we are first diagnosed the word ‘remission’ is put out there and then doctors give unrealistic timelines… that we hang on to because we really want our old lives back, we just want to return to who we were with all the boundless energy. How can a doctor say, “9 months to remission” when they really have no idea… there is no medical definitive for Vasculitis clinical remission and the doctors can’t even agree on the definition of remission for Vasculitis.
I can look back in my notes over the past 8 years and see where the definition for remission in Vasculitis has changed again, and again… I think the cyclical nature of Vasculitis is the best diagram that I have seen and the most realistic in terms of the cycle patterns of our illness. I also think every patient is different and how the inflammation affects us is different (along with the how effective certain meds are on different patients). I really believe there are sub-classes of CSS…. not just ANCA positive and Negative and with more genetic testing and realizing how our CSS became activated we may get a better understanding in the future.
Hope this rambling of an answer helped…
Posted in CSS by karen in wonderland with .
Some days I think that pretty much sums up parenthood. 22 years and 9 months ago, I began my journey in parenthood. There have been many ups and downs, highs and lows but I have to say it has never, ever been boring.
Feeding my ‘spawn’ has been challenging. I love to cook but have managed to have 2 kids with simpler tastes. Hamburgers, grilled cheese, chicken nuggets, mac and cheese and tortellini are their foods of choice. I have tried and tried again to get them to widen their food tastes. I always have felt like I did something ‘wrong’ as a parent because I could not get them to eat other foods. I am a culinary school graduate; I can cook anything but nothing they like to eat.
So, let them eat chicken nuggets for breakfast and peanut butter and jelly every single day of their life because… as was stated earlier “At the end of the day, if they don’t starve or get scurvy, you’re doing fine”. Lighten up moms and dads and give yourself a break. There will be many more things to stress about in your kid’s futures.
Ps – Here’s a little site with easy to make pull apart bread ideas. I have been making a different one each night and even my spawn have enjoyed a few of them. I use pop and fresh biscuit dough to make it simple and quick too.
Posted in Culinary Adventures by karen in wonderland with .
Uni-Tasking and Going to the Movies
Who knew going to a movie alone in the middle of the day could be so enjoyable? Is this a secret that I have never been privileged enough to know about?
Today I was tired, worn out mentally and physically. It seems every time I exit the house and go into town I have huge ‘to do’ lists and end up spending every free moment doing something for somebody else. Usually if I have an extra hour in town I find myself grocery shopping. Yes, sad but true.
So today, I did something totally radical. I went to the movies instead. It was not planned and that was a great thrill for me. I actually never realized how much going to the Movies was a form of escapism.
My family tends to watch movies at home and then I think about things I should be doing or end up pausing it multiple times to take the dog out or take a text or phone call. I always feel guilty about sitting at home watching a movie when there are things around me I should be accomplishing.
I never understood the idea of spending all that money and actually going to the movies. Having 3 children means it is always cheaper to just wait for the DVD version and watch it at home. Also going to the movies with 3 children, no matter their ages, is never relaxing…
Today was different. I got to see a movie of my choosing, no worrying about somebody else not liking it. I got to sit where I wanted to, where I felt most comfortable and could see the best, no worrying about finding 5 seats together. It was a ‘chick flick’ type movie and I did not have to argue the value of the plot lines afterwards with my husband.
I got to totally escape, no cell phone, no worrying about others. I for once found myself uni-tasking. Doing only one thing, concentrating solely on one task, it was amazing! I sat back and became one with the story line. I laughed, I cried, and I smiled. I exited the movie when I wanted to… for once I did not have to see the credits and re-entered the world. I felt different, I felt calm.
So, I challenge you all to go to the movies alone, to a very quiet matinee. Do what you like, when you like. Afterwards be one with yourself and the movie you watched, no need to discuss it with others just be in the moment and enjoy the experience.
Posted in Uncategorized by karen in wonderland with .
Promise I will be MUCH more chatty in the coming weeks. Launching this site and it’s associated Face Book page was a lot for me to do then we pile on broken wrist AND I dropped my computer on the sidewalk outside of Reno airport (note to self… A regular backpack is no protection for a dropped laptop) and you may have a perfect storm.
Good news is I got a cool new laptop to begin this new Pathway. Rented a car and found the local Apple store in Reno and walked out 20 minutes later with a new laptop. Switched from a 17inch to a cute little 13 inch. Amazing what they let you charge on a credit card 😉 Working hard on recovering old files from dropped laptop, I was lucky, no hard drive damage. Just mutilated the track-pad and probably killed the powerful wizard that lived within my laptop.
My ultimate goal is to post 1 post per week on each of my headline subjects. So 4-5 posts per week. A lofty goal. Each new post will also be linked on my FB page, then archived within my web pages. Bear with me, I am just learning WordPress and everything so the learning curve is high and my brain cells tend to leap out of my head at key moments.
Posted in Uncategorized by karen in wonderland with .