Sometimes I read another person’s blog post that really hits home and want to share it with my followers since it is relevant to what we may be feeling or going through. I would like to take a minute today to share a blog post that I recently found very relevant and inspired me to write more about it.
Wit a person with Wegner’s posts in her blog A Little Life Comma, about Health Fads and how a simple night out with the girls may turn into you defending your health choices are being bombarding with people insisting on ways to boost your immune system. Problem is when you have an autoimmune illness is is usually because your immune system is OVER-active and we take immunosuppressants like Methotrexate, Imuran and Cellcept to quiet it down so it stops attacking our vessels.
Too many very well intentioned but insistent ‘friends’ will spend HOURS talking to you about how you can boost your immune system. They do this not out of malice but out of caring, they see us with constant colds or worrying about getting a cold or virus and think we need to boost our immune system. It is hard for them to understand that by boosting your immune system you may activate your immune system into overdrive and began a horrible cycle of a flares. (a flare is a reactivation of your illness — we NEVER are cured, we just hope to keep things quiet throughout our lives). A closer look at the autoimmune disease vasculitis and flares article from Stanford University.
Usually when someone will not listen to me, and insist I need to boost my immune system I just go to my happy place and sing my favorite tune in my head. Nothing I can say will quiet some well meaning people down, even after I try to explain to them WHY we need to suppress our immune systems. We know by suppressing our immune systems we put ourselves at greater risk for infections but we live under a no win situation ( like the Kobayashi Maru faced by the famous Captain Kirk of Star Trek) and have to sometimes pick the better of two evils. I hate to admit it but I have gone as far as to drop contact with some of these ‘friends’. I can’t take being told about herbs, meditation, yoga and what they learned on Dr Oz show the previous day.
PLEASE, PLEASE if you are a true friend of someone with an autoimmune illness LISTEN to us and don’t push things on us. We would LOVE a cure — We dream about a cure… We might even do a human sacrifice to the the Volcano Goddess for a cure. UNDERSTAND we have learned our health is all about Maintaining.
Maintaining the least amount of medications to keep our illness from flaring.
Maintaining the side effects of the medications we have to take.
Maintaining some normalcy in our lives.
Maintaining our sanity at times.
Please DO NOT add to our stress (which can cause flares) by insisting we try your latest find. We know you love us and don’t want us to be suffer. We know you just want to help. We know you want us ‘cured’ and back to our old selves. Understand we would like like that too, we do not wallow in our diagnosis (at least I hope we have learned not to…) Understand that we stress ourselves out by trying to make you feel OK about our chronic and incurable illness..
Just learn to be our friends by listening without giving us cures, quick fixes or your opinions. Just listen, nod and NEVER say you are sorry. We HATE that. Just say I am here when you need a cup of tea (or something stronger) and call us when you are at the the grocery store, stating you are there and what can you get for us — we will never ask you to go for us, we are way too proud for that. Just be there for us, don’t abandon us because we have to cancel often, instead come to US with take out food and movie so we can stay in our pajamas and enjoy some time of not being alone (ok, and help me fold a load of laundry while you are here). Understand I want / need to do things myself but could use company while I do them.
Yes, there are definitely alternative therapies that can help us along, lessen the pain, lower the inflammation, or just help us along the path of this bumpy journey but please do not offer us ‘cures‘ and please STOP trying to BOOST our immune systems. We need our friends to act as friends with open arms and ears. We need people that listen and who don’t try to fix us or cure us. Just be our friends and we will reward you with our unique sense of humor and new found views of the world around us.
Posted in CSS, Uncategorized by karen in wonderland with 2 comments.
The 1st day of April is also known as April Fool’s Day in many parts of the world. I never really liked the day…. I was never into the ‘fooling’ mode. The day was just an irritant to me. Eight years ago April 1st became something more to me, it became my anniversary. When you have been diagnosed with a life altering illness you suddenly have a new anniversary. April 1st, 2007 was the day my Asthma Doctor dialed my cell phone and told me that I had Churg Strauss Syndrome (CSS).
I was driving at the time…. I pulled over to the side of the road and listened. Weird thing is I searched my symptoms and the tests my doctor was running on the internet and realized this is what he was looking for a few days before. I already looked up what CSS was and what the outlook was. I knew deep down that I had this chronic, incurable illness even before the words were out of my Doctors mouth. He wanted me to come right into his office so we could discuss this diagnosis. He was so worried about me, I could hear it in his voice. I refused to come to his office, I refused to talk about it. I began running… I wanted to drive as far and as far as I could just to get away from this diagnosis. In 2007, the prognosis for CSS was not as good as it is today. The statistics out there were frightening and I wasn’t sure if I would see my kids graduate High School. I was scared and needed to run.
I have to say this running continued for many years into my diagnosis and even today I find myself needing to run at times. Eight years is a long to co-habitat with a chronic illness. I get tired of all the medical appointments and although I have learned acceptance and have had to adjust some of my hopes and dreams I know all things are possible but I may have to alter how I obtain those dreams. These last eight years has allowed me to learn, laugh and love. I appreciate life more and know how precious even the little things are.
Posted in Uncategorized by karen in wonderland with .