For the Moment vs. Securing a Future
Living now with a chronic illness that’s attempting to kill me three ways has totally changed the way in which I think about my daily life, and how it relates to time. Most of the advice one hears about living life and time is about acting as though you have no more time left. “Live life to the fullest.” “Carpe Diem.” or “Live Like There’s No Tomorrow.”
Fortunately, for me, my life reads better than most people’s bucket lists. I’ve trekked in the Himalayas, met the Dalai Lama at his house, taken a Camel Safari, earned a motorcycle license in Bali, owned a nightclub in Peru, taught English in a jungle, and visited 48 out of the 50 states.
I still found time to marry the love of my life, graduate from college magna cum laude, create meaningful work that I loved, give birth to three amazing children, and enjoy the fruits of stay-at-home motherhood.
Ok, I suppose one might argue that I am technically “sick,” but I think my lack of contagiousness is the spirit of the mask.
Now, at the age of 38, and at the time the my kids are aged five, three, and one, I find myself diagnosed with a very rare (about 400 people world-wide rare) autoimmune disease called AntiSynthetase Syndrome. (Otherwise known as ASS. Yes, that’s right. It’s called ASS!)
This ASS has further given me Interstitial Lung Disease with Pulmonary Fibrosis and Pulmonary Hypertension. So, at this point, I have to worry about both my lungs and my heart. If those don’t get me, then I have to worry about the fact that the meds I now will take for the rest of my life will deplete my immune system so dramatically that any infection poses a huge life risk.
Setting the Bar High
Suddenly my life is no longer about living it to the fullest or acting as though it is my last day. My husband has told me he still expects another 30 years out of me, and I’d like to do all in my power to make that happen for him.
Having a chronic disease does not exempt me from the proverbial bus that is turning the next corner to run me down. I don’t have much control over that situation (except remembering to look both ways before crossing the street. SAFETY FIRST!)
My daily (weekly, monthly) life revolves around doing and planning the things today that will help keep me alive as long as possible. Let’s face it, folks, unless you’re a complete miserable asshole, your kids don’t care about your happiness. What they care most about is your presence, and they want that as long as they can possibly get it.
What a great way to share your journey! Always here for whatever you need! ♡
Love it! looking forward to reading everything you have to say.
Can’t wait to read more…
Love your introduction!!!! p.s. I’m from Peru, but left at the age of 5. Now living in Argentina with newly dx’d PM/SCL and Interstitial lung disease. Look forward to following your blog for inspiration!
Thanks Ursua. Not sure how much inspiration there will be to find, but there should at least be some honesty and a few stories from your home country.
I am having tons of symptoms and I had an autoimmune panel done. I am positive with JO1. With your understanding is this pretty much a diagnosis for what you have? I am being sent to a rheumatologist but I have been researching. Thanks so much for any input!! I am just not familiar with this!
Hi Anna (or is it Anna Nicole?). I’m sorry you’ve found yourself in this position, but I’m glad since you have, you’ve found my blog. Typically, those of us with ASS, follow the guideline that if you are JO1 positive (or any of the other ASS related antibodies) and you have either 2 major criteria or 1 major and 2 minor criteria then there is no doubt you have ASS. The criteria is as follows:
Major:
Interstitial Lung Disease (ILD)
Polymyositis or Dermatomyositis
Minor:
Arthritis
Raynoud’s Phenomenon
Mechanic’s Hands
If you have yet to be diagnosed with the above criteria, it is my (non medical opinion) that it’s only a matter of time or they haven’t run the correct tests. If you are unsure what symptoms would be with any of the above, feel free to let me know and I will be glad to describe them all to you.
With the positive JO1…you should be well on your way. But so often, we are the ones that have to be proactive with our physicians to make sure that we get the swift medical care and treatment plan in place so as to cause the least amount of permanent damage to our bodies. I encourage you to find us on our facebook support page at
https://www.facebook.com/groups/AntisynthetaseSyndromeSupportGroup/?ref=bookmarks
so that you can have the benefit of a 250+ others that may act as a sounding board and can answers nearly any and all questions you may have.
I hope I did not just overwhelm you with too much information. Please feel free to ask me any other specific questions or to get clarification on anything I’ve posted here. There are many of us worldwide that have banded together in order to help each other get the best possible outcomes while dealing with this diagnosis and the complications that can come with it.
Good Luck…and I do hope I hear from you again.
Sandra
Thank you so much for your response! And for the information. It is a lot to take in and I k is I have a long journey ahead!
Hi. My dad was D.C. With pulmonary fibrosis and RA. He’s pretty sick and doesn’t qualify for transplant. Within the last year he has required more and more oxygen and any minor cold really outs him down. I just don’t think the doctors have given him much information except that he is terminal and there is nothing to be done. I am exited to look through your posts and learn more. I don’t know if this is partnof what my dad has but it’s very interesting. Thankyou
Hi Tara, I’m so sorry to read about your dad. Although we have a different diagnosis, they are both autoimmune caused pulmonary fibrosis. Please let me know if you’d like to talk privately about your dad’s situation in case there is any insight or information I could offer.