Friday, January 4, 2013

Why I'm Here

I've received some amazing emails recently; several of which carry the same message: ".....reading about your experiences makes me feel less alone..." or "....thanks for being there. I don't have anyone around here who has gone through this..." or ".....I thought I was the only one that feels like this."

Thank you. I am so gratified that anyone out there would benefit from my experiences, but I think something else here needs to be emphasized: I NEED YOU for the same reasons that y'all enjoy reading Reasonably Well. I went looking out there on the great internet void looking for others that felt the same crummy symptoms that I had; others that weren't getting answers to their questions; others that just couldn't understand why their life was changed drastically and not for the better; others that were outraged that autoimmune disease robbed them of their careers and financial security; others that just weren't ready to move into disability without kicking and screaming and throwing a fit.

I can't think of any other experience in my life in which the ability to connect with others was so vital to my sanity. Motherhood? Craziness, yes.....but enormous resources out there. New on the job? Anxiety provoking but again, others readily available to lend a hand or a shoulder to cry on.

Dang. I wish I was still fretting over things such as potty training a stubborn two year old, or poring over a policy and procedure manual.

No.........what I found out as I began my autoimmune journey was that nobody around me personally and professionally had any inkling of what I was experiencing; forget about offering any kind of realistic experience based advice.

That's where y'all come in. And I'm more grateful to you than you will ever know.

8 comments:

annie said...

You have put this so well, Julia. There are not many resources on a little know illness such as sjogren's. My rheumatologist is a good doctor and I've been seeing him for over 15 years, but I've been doing all the research on sjogren's by myself.

I can understand how you feel grateful to us, but we are deeply grateful to you for the time, and energy (that you don't have)you put into your blog. We are grateful for all the research you do, the articles you find, and all the hilarious jinks you get into.

I'm grateful I stumbled onto your blog while newly diagnosed and searching for answers. I've built up a little sjogren's library, but I come here because this is where I can get real answers to my questions. This is where sjoggies come to visit and talk. Thank you.

Blogger Mama said...

Amen!!

cargillwitch said...

I visit you and http://sjogrensworld.org/forums/index.php

Sjogren's world forum most days- I have been at a few other forum or bulletin boards but find I usually wonder back to check things out ! I often shudder to think how i would be "feeling" emotionally if my diagnosis had come pre-internet. Very isolated I would imagine.

Shannon Hutcheson said...

Ditto Julia! If it were not for the ability to connect with people who suffered as I did with Fibro and chronic pain, I would have long since gone to a very dark place indeed.

Thank gawd for the internet! and Twitter lol

Amy Junod said...

As I've been out and about this holiday season I've been asked how I was. It is always the "How are you?" kind of inquisition with the squinty eyes that bothers me. I still don't know how to answer. People seldom really want to hear the real story and a Sjoggie finds out quickly who will stick around for the true answer.

I had logged into your blog one day on the way home from an event (Hubby was driving)and it hit me. Reasonably well. I've been worse, I've been way better...but today I am reasonably well. That's my answer from now on.

You are a very gifted writer and I love everything about your blog. I love the mix of info, honesty and silly stuff.

Heidi Syndergaard said...

Amy-I agree..I have been saying 'hanging in there' when asked, but tired of that response!And Julia - there are several really really good blogs out there...in fact I use yours as a reference to check out others - hence why you may see me showing up so often on yours! (I am not pc gifted - so take a simple approach-:)..however your blog IS the gold standard to me. The perfect mix of human stories and experiences with spot on medical updates for us all - thank you!

Anonymous said...

Julia, I have been following your blog for a couple of years, and it is truly a life-saver for me. So - I appreciate you and your efforts to keep us informed VERY MUCH! I look forward every day to see how you are doing and see the great information that you share with us. Best wishes for the New Year!

Peggy said...

I belong to a support group. Our group is filled with men and women that share their health issues and I am eternally grateful for this intelligent group. I don't what I would do without them. But I know there are millions of people that don't have that support.

This holiday season I was referred to your blog by a fellow Sjogrens colleague? (that is better than saying "sufferer" or "patient" isn't it?)

So I have your blog booked marked now and here is why I like it: I enjoy your blog because it lifts me up with humor, insight and I enjoy the calmness and your easy style of writing about your experiences and everyday mundane stuff we all go through from time to time. Sometimes I need more than exercise, or volunteer work or meditation to get through the day, and that is where your blog comes in to raise me up.

And you are sooo right about the lack of resources available and the need to connect to keep from going crazy.

Virtually every physician / health care professional all have that deer in head light look on their faces when I have gone in for a consultation. To any health care physician I want to say: I know there is no cure, but brother/sister give me some help here? Is this how I am supposed to feel ? Is it going to be one roller coaster ride after another? Is this the new normal? After years of you saying it was stress or anxiety, now you got nothing else to say? Do you as a doctor want to hear from me so that I can educate you or would it be easier on you if I just stayed silent and suffer?

I wish I had a clever remark to say to the doctors so they would instantly understand how their deer in headlight look and demeanor conveys a total lack of understanding and results in a No Confidence vote from the patient.

Maybe we need a national contest for a clever remark? I bet you have one in your bag of humor!

Thanks again Julia for your insights and humor - I always feel better when I am laughing than ranting.

Peggy

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