My last post was July 2015. It’s now November 2017. I’m not sure at all, even in the slightest, how 27 months have gone by. I have thought many, many times about what I want to sit down and write and I never have gotten to it. But several things happening lately have convinced me that I need to sit down and write again. I need to process my thoughts and feelings and I do that best by writing. So I’m determined to make it a priority.
So the last post was about how I’d started baking and selling at the farmer’s market as a result of my daughter needing to be gluten-free for her own autoimmune disease of alopecia areata. That was in July 2015. By October 2015 I’d quit my full-time job and November 28, 2015, the retail store of Shana Cake officially opened for business! It is located in downtown Topeka, KS and in April of 2017 I opened a second location in downtown Lawrence, KS, our neighboring town. It’s been my full-time job for just over 2 years and when I opened the second shop my mom retired from her full-time job and she’s taken over running the first one. We have two shops, 10 employees and a ton of very happy customers that can come into a shop that is 100% free of gluten, dairy, corn, nuts, treenuts, artificial flavors and colors and most products can also be egg-free (making it vegan as well!). While we only have to be gluten-free in our household because of my girl, we quickly realized from the farmer’s market experience that (1) a lot of people have cross-food issues and (2) there was a desperate need in our community for this service.
When the shop opened I was feeling really well. Better than I had in many, many years. I still had flares, I still had days that were worse than others. It was a continual presence in my life, but it was manageable. Traveling to the specialists out of state was worth every minute and penny spent doing it – he listened, heard what I was saying, ordered baseline testing (he was the first doctor to take my fine motor control issues seriously and indeed they were documented through the neuropsych eval he ordered) and then begin treating me with immunosuppresents (imuran).
I wouldn’t have considered myself “healthy” but I was better. I was happier, had more energy, far less pain, enjoyed being around my family, laughed more, felt strong enough to take an insanely scary step of quitting my full-time job and starting a bakery. I worked crazy hours getting the bakery up and running, and sometimes my body pushed back and sometimes I had flares, but I’d take it easy, occasionally take a steriod pack for 5 days to knock down a more troublesome flare, and kept going.
It was marvelous.
Until it wasn’t.
I was once again the frog that found myself in boiling water without realizing it. Until it was all of the sudden there.
I had about 15 months of what I describe as feeling “good.” That’s all I got. That means the last approximately 15 months have been an increasing struggle again. Only with new challenges and diagnoses, more tests, increasing frequency of doctors visits and all the fun that goes along with all of that. Only now with the responsibilities, pressures and stresses of owning and running a bakery (and now 2!).
So I have a list of things I need to write about and I’m determined to get back at it. I need it to process and release. And goodness knows I need to process and release these days!
So I’m pressing the “resume” button after a 27 month “pause” on the blog.
bit of a drama queen fix moment don’t you think
My first instinct was to moderate this comment to the trash bin where it really belongs.
But then I realized that I had just published this post late last night (so it wouldn’t be showing up in search engines for keywords yet) and I haven’t put it anywhere on social media. So they only way you could have seen and read the post to make this comment was if you signed up for my mailing list that sends new posts when I publish them. So you voluntarily chose to receive info from me, knowing that my blog is my personal story and experiences with my diseases. Then you posted an anonymous troll comment calling me a name, which I would usually decide isn’t worth my time or energy to respond to (you know, “don’t feed the trolls”).
The reason I decided to go ahead and allow the post and reply to it is that it is precisely this type of attitude that makes it so important for people going through these experiences to speak up. Millions of people live with daily, chronic pain and fatigue while diseases change their bodies permanently for which there is no cure, no respite and often not many explanations for even why it’s happening. And those millions of people often endure this in silence because they don’t want to be a burden to their loved ones and friends, because it happens every single day and they don’t want to be a broken record, because they don’t want people to see them as only a “sick person” instead of for whom they truly are, and because they don’t want to be seen as a “drama queen” when simply expressing the daily struggle that they encounter.
The reason I began writing this blog years ago was because writing is how I’ve always processed my feelings and been able to express them to those I care about. But what I found out was that my voice gave others the inspiration to share their voices with their loved ones. Even though I haven’t posted on here in over two years, I still receive regular emails from people that have stumbled across the blog thanking me for expressing a story that feels like it’s their own story. I’m not alone in this struggle with chronic health problems, nor the emotional and mental strain that accompanies them.
So feel free to call me a drama queen. My skin is thicker than that. I don’t write for you. I write for myself and those that are struggling along with me. I write to process my own experiences. If you somehow happened to stumble on my first post in over 2 years within hours of my publishing it, despite it not being posted anywhere on social media or promoted in any other way, and you feel that I’m having a “drama queen fix” then move right along – you clearly won’t be interested in what I write about now or in the future. If, as I suspect, you received this new post because you at some point in the past signed up for my mailing list and you feel this way about my writing, there’s a super handy little link at the bottom of each email that says “unsubscribe.” Go ahead, it won’t hurt my feelings.
And thank you for pointing out to me and everyone that stumbles across this post in the future just exactly why so many of us suffer in silence, only making things worse for ourselves and our families as we turn inward and fail to work through our emotions, because we’re afraid of being judged by people like you. I’m so glad you gave a real-life example of this for others to see and believe that it is one reason why we shut down in our relationships rather than reaching out.
Kelly, I like how you handled the troll in the first comment on this post. Well said and very true on how we shut down on sharing our struggles. I am glad to see you back to blogging but sorry to read that it has been a hard time for you again. — ? Again? Hard word to write as I am heading into the winter months. I am AGAIN dreading the need to slow down to keep from flaring. Winter is my predominate time for flares.
I am excited to hear that your Bakery (s) are doing well.
Our Daughter has just finished her Baking and Pastry degree at Culinary Institute of Michigan. She has returned to CIM to pursue her full Culinary with some Bachelor classes.
Our family is also owners of our of business (Auto repair shop) so I understand the strain and hours of dedication involved.
Add on top our newest addition to our business is an employee that is highly allergic to Gluten.
So while I write this I hope you can see just how your post is close to my heart.
Keep posting and take the moments you need to stay as healthy as possible.
Sincerely yours, Mistress of Madness Nora
RA and Fibro Warrior.
Well done for handling the troll. I have had two beautiful years then….Bang. added three new AI diseases out of blue and I’m now losing my vision due to one. I didn’t feel your post was a feel sorry type post. Actually the opposite. It’s so easy to NOT resume after our bodies mount an attack, bit you’ve shown that even after you can still have good moments. Keep on fighting and giving others hope X X x
Thank you for sharing your story and finding the strength to come back and publish. The brain fog and fatigue is not a joke. The fine motor impairment is the cherry on the top! I noticed mine when my makeup compacts started falling out of my hands, then I had that weird hair pluck moment and I almost cried!
This disease has robbed me off of my intelligence and brightness – something that I defined as my personality. I’m tired of hearing the constant judgement, the long running joke of people around me on how may times I see doctors, how this fatigue is just me being lazy, how I complain about stress (everybody has stress), how i don’t work hard enough, why can’t I just work and study like normal people and the list goes on.
And to top it all off, when people say “but you don’t look sick” as a way of discrediting what reality is like for us.
I think the two worst parts of this disease are (1) finding the right doctors and care is a never ending battle and (2) KNOWING how I used to be, what I used to be able to do and then not being able to do it now
Please continue to write and share. You have no idea how many aching hurts you’re touching. Ignore the trolls