“A diagnosis of catastrophic illness changes everything. It’s a thick line drawn through your life, separating the before and the after.”
-Heather Summerhayes Cariou (Author – “Sixty-five Roses”)
April 1st heralded the beginning of Sjogren’s Awareness Month. It was my intention to blog a bit about Sjogren’s Syndrome, and specifically my own experiences, each day of April. That did not happen. Here we are on the final day of the month, and I blogged only a few times. I could beat myself up about not reaching the goal I set, but I get beat up enough by other things out of my control including my own body and the symptoms of Sjogren’s.
Though not writing daily, I’m glad I decided to commit to writing about Sjogren’s again because there were several people who contacted me privately, or commented publicly that they had never heard of Sjogren’s before reading one of my posts. I had mentioned to Mr. Wanton, if even one person learned of Sjogren’s as a result of my blog, it would be worth it.
Thank you to everyone who has read, commented, and shared my blog. I appreciate your assistance in spreading awareness, please continue to do so. Sjogren’s currently has no standardized treatment protocol and no cure, perhaps through continued awareness and increased research funding, over time that may change.
In the past I have been reluctant to write about my journey of diagnosis, and navigating the symptoms of Sjogren’s because I felt some people might see me as doing it “for attention” or to garner sympathy. This week I ran across another blogger’s post about how in our society we condone (or at least tolerate) so many types of attention seeking behaviour (one only need think for a moment about reality TV, the shenanigans of political leaders, or the proliferation of highly inappropriate or risque “selfies” on-line) yet when someone with a mental health issue or other chronic illness writes authentically about their experiences it is often frowned upon, deemed “attention seeking”, or having a “pity party”. That is unfortunate in my opinion; we have much to learn from each other’s honest health “stories”, both from a medical perspective as well as a human / empathic one.
I will be continuing to write about Sjogren’s, but I will also return to writing about other topics as well. As I’ve mentioned previously, I started this blog to write “wantonly” – about whatever grabbed me in the moment. When you have an illness that causes so much havoc with your body, it is hard to ignore. My life is not all Sjogren’s, but Sjogren’s does affect every aspect of my life.
To close out Sjogren’s Awareness Month, I was thinking about what I would want people to know most of all. The first thing is the seriousness of Sjogren’s; it is a progressive systemic disease equal in effect on quality of life to MS. It is definitely life-altering, but can also become life-threatening when organ involvement or lymphoma develops.
Secondly, it requires specific treatment and management individualized to each patient, yet it is a relatively unknown disease among medical professionals including Rheumatologists. In fact, one physician with Sjogren’s herself who does medical school in-service sessions discovered in her area of the USA only one medical school even had Sjogren’s in the curriculum. I have heard other doctors mention they heard the name in med school but had only two minutes of lecture on it. I suspect they were told it was only dry eye and dry mouth, as that continues to be the prevailing belief.
I want people to understand how scary it is to have an illness doctors are so unfamiliar with and to be unable to follow a standard, proven treatment protocol. I want it to be known that even though we may not have cancer, many of us are on a chemotherapy drug or a “biologic” drug, possibly for the rest of our lives. There is no such thing as remission.
On a personal level, I want people to know when I have to miss out on an event it is not always by choice. Each time I miss out on a once in a life-time event important to a family member especially my children, or a close friend, it breaks my heart a little bit more, even if at the time I say “it’s okay”. That if I seem rude when I have to interrupt you and leave immediately when we are standing to chat on the street or in a store, it is because I can’t stand up any longer. When you see me clothed head to toe under an umbrella on a clear summer day it is because being exposed to the sun is risking a disease “flare” that can cause further organ damage. If you knew me before Sjogren’s you might miss the person I used to be; you need to know I miss her too. Sjogren’s drew a thick line through my life, there’s no crossing back.
12 thoughts on “Life Divided in Two”
I just want to thank you for all your posts! I was diagnosed in 2014-after undergoing many doc visits over seven years-Age 46-could not stand, knee inflammation, back problems unspecified after 5 MRI’s-then fibromyalgia and neuropathy in left leg with sciatica-Cortisone and nerve root blocks etc….. jeez. Finally I told a foot doctor about my father’s Psoriasis and my brother’s psoriatic arthritis and Aunt’s thyroid and I.Cystitis and-insisted on auto-immune panel-Well here were the findings as I struggle to type-Hand and finger pain. Elevated Sed rate-RF factor-79, Ana positive-SSA-anti Ro-I even diagnosed myself before seeing Rheumy. I knew it-but did not have a clue about Sjogren’s. I remember dreaming I felt like cotton balls were inside my mouth and horrible joint and flu-like pain. My Mom was going through lung cancer and I did not want her to know how bad I felt 4 years prior-God bless her, she just thought I was lazy and liked to sleep late-zzzzzzz my whole life and suffered severe anxiety.. Well she passed away and did not ever know in 2013 and I took good care of her-lost my father-I believe due to extensive doses of Methotrexate over 7 years to a rare cancer attached to his heart in 1995.This is a very tough journey and even my brother and sister do not want to talk about it, or acknowledge i and ignore me. Who the heck would want or make this up? I feel so isolated. I have been with a great guy for 24 years-but I know it is taxing. We do not have any children-but my fatigue and pain is getting worse. Dry eyes and mouth too. This disease is horrible-I hate going to doc appts and I am taking more of a functional medicine approach-but cannot afford to see one. No dairy, soy ,or gluten and shed 11 pounds.. Still worn out. Insomnia right now- tired wired. I just want you to know how much I love your blog-It makes me laugh and cry. God bless you! If you get a chance check out Tom O’Bryan and the auto-immune betrayal series. I will not touch Restasis, D-Mards, Biologics, or chemo etc… I am primary right now-but I cannot afford to be sick. All this over the counter stuff and toxin free everything-well you know! Let us be grateful for everyday we get out of bed and shower Lol-Take care and heal Mrs.Wanton-With much admiration-where is our lottery check-since we are the 1%. Ha Ha! Gotta have a since of humor. I think I wore myself out-Finally- I will drag my sleepy sloth self to bed. Sweet dreams!
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Thank you for sharing some of your medical journey with me, and my blog readers. You have been to hell and back, and I’m so sorry to hear of your difficulties.Your honesty about your struggles has me in tears too. But beside your hurt, I feel your heart-warming authenticity and your sense of humor shines through too. I hope better days are ahead for you!
And thank you so much for reading my blog, I’m happy you find it helpful and entertaining.To me the ONLY blessing of having this disease is connecting with some of the most wonderful, compassionate, supportive people on earth – people like you who despite the pain and struggle reach out to others, tell their stories, and keep a sense of humor through all the Sjogren’s and related “messiness”.
I will check out the Tom O’Bryan info you suggested.
I appreciate you taking the time to respond at length, as I do understand the energy just typing a reply can take and the hurt of the sore fingers, and hands too.
Take care & be as well as you can.
Thank you so much- Keep blogging-It really helps, Thank goodness I love soup.God bless and take care. I do not want to say keep fighting- Because our bodies are always fighting-Ha! Ha!. Like my Mom said never,ever give up! Best of luck to you and your family on this journey.
Thank you. 🙂
Suzanne, In my humble opinion, this is a blog which you needed to write and post…
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Apparently so. Thanks for reading.
Yes!!!!! I can totally relate…….to……Life Divided in Two !!!
Sure wish you did not. 😦
I wrote about your story, your disease, on April 26. (http://wp.me/p1pIBL-2eC). I wanted the world to know about this shadowed disease. I feel with you, and hope that by sharing your story the world knows a little more about Sjogren’s Syndrome.
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Claudia, thank you so much for helping to create awareness and educate people about Sjogren’s, I really appreciate you helping spread the word! ((((hugs))))
Thank you so much for all that you have shared. It has definitely given me even more understanding of the trials and tribulations you have endured. And the writing has been phenomenal!
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Thank you for reading, and understanding.And for the wonderful compliment on my writing, I am honored you think so highly of my writing.