Saltine Meets Needs of Entire Public

If you live in or are traveling to the Nashville, TN area I encourage you to try a new restaurant in town, Saltine. Saltine has an incredible menu of seafood dishes that can delight the tastebuds of any age group. The spunky yet elegant atmosphere should appeal to a wide cross-section of the community.

But, for me, the restaurant’s best feature is its accessibility! It doesn’t matter what type of mobility equipment you use (or dont!), you’ll be able to enjoy your complete dining experience. Not only does Saltine have plenty of accessible parking spaces (including 2 van accessible spots) but the ramp into the restaurant is easy to access and navigate.

Need to use the restroom? No problem at Saltine! Even for the disabled

Upon first glance when I opened the door, the stall looked small – I use a large power chair and also must include my Service Dog. However, both of us were able to fit with space left over and the layout of the stall made transitioning easy.

The sink area made me so happy which only wheelchair users may understand – there was plenty of room for me to pull up to the sink, with my legs underneath. The height of the faucet, soap and paper towels was also within my reach – something that is many times hard to find when I’m out in public.

Two other accessible features that are rarely seen (by my eye, please take note) were the hook for purses, coats, etc found in the bathroom stall and the changing table being of a height to accommodate wheelchair users.

All-in-all, I was extremely impressed with Saltine for their tasty food, fun yet relaxing decor and commendable accessibility. I hope you’ll give them a try!

Saltine is located at 1918 West End Avenue, Nashville, TN 37203

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Health-care Workers Skepticism Can Have Dire Consequences to Patients

I am writing this in hopes that others with rare disease(s) recognize the importance of speaking up; and health-care professionals of all types realize the importance of listening.

 

I found myself out of one of my medications and had no refills left. Out of the plethora of meds that I take, this is the one that keeps me alive – I have Idiopathic Intracranial Hypertension, a rare disease which affects only one percent of the world. For an unknown reason, my body stopped absorbing my spinal fluid, so it builds up in and around my brain and spinal column. Fortunately, I am one of the 50% of patients who respond to this medication, which was the only FDA-approved med in my state at the time of my diagnosis nearly ten years ago. I went into ‘remission’ after one year of taking the medicine. Remission is a commonly debated term among the IH patient community as well as with doctors and specialists. For my purposes, I use it to describe the ceasing of my IH symptoms and leveling of my spinal pressure while ON medicine. However, in 2015, my CSF (cerebral spinal fluid) levels began to rise again, causing decreased vision, headaches and pressure within my head. My dosage was increased but I’ve since lost some vision in my left eye and still deal with headaches and pressure at times. Without the medicine, my CSF would increase until I experienced blindness, seizures, stroke or death. So, the medicine literally keeps me alive!!

My pharmacy contacted my doctor’s office on a Friday about refilling the medication but got no response. The pharmacist was kind enough to give me an emergency supply to last until Monday morning. Rx supply When Monday came, I contacted the office twice through an online messaging system, imploring them to refill my prescription that day as I was out of the med. By the afternoon, my pharmacy still hadn’t received an order to fill so I called the office. The nurse asked what I needed, and I explained to her the urgency of having the prescription called in that day. When I mentioned what the medication was used for, she replied with sarcasm, “It drains your spinal fluid?” I said, “Yes, I have Idiopathic Intracranial Hypertension.” She said, “Huh, never heard of it. Well, I’ll send this to the doctor and tell him you say it’s urgent.” I got off the phone feeling hurt, frustrated and angry. Just because she’d never heard of my disease didn’t make it nonexistent! Her skepticism could endanger me! Sure enough, I called the pharmacy Monday evening to learn that they’d still not received an order.

So, Tuesday morning, I called the doctor’s office again in a near panic. I learned from the young lady who took my call that the nurse had not sent the message to my doctor but to his nurse and no action was taken! I again repeated how important it was that I begin taking this medication as soon as possible and why. I was told that she was marking it urgent and that if the pharmacy had not received an order within an hour, to call back and ask for her specifically. Low and behold, I was finally listened to! She listened and acted, and I had my medicine in a few hours!!

I thought about what would have happened had I not been assertive in advocating for myself. I thought about patients who may not know they have that right or feel confident enough to speak up. But, when people have rare diseases, there are medications we take that literally mean life or death for us. We matter! We’re important! We deserve to speak up for ourselves! We deserve to be listened to! We deserve to LIVE!

And, how about the health-care workers? The ones who aren’t knowledgeable about every rare disease? The ones who dismiss patients as hypochondriacs or dramatic instead of listening to them and taking them seriously? This kind of attitude can cause much harm in the life of a rare disease patient, not to mention their family.

So, if you have a rare disease like me, SPEAK UP! And if you work in the health-care system, LISTEN UP! Let’s start giving CARE to our RARE!

 

Not Ya Mama’s Cookin’!

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Like many others, I grew up watching sitcoms on television that depicted joyful, loving families who’d sit down together for meals that were often cooked by the mother. I had no idea that I was learning anything; I simply watched for my enjoyment. But, I was learning life-lessons about family dynamics, familial norms and expectations of motherhood.

Now that I’m a mom, I realize that these lessons learned subconsciously have caused me quite a bit of discomfort in myself as well as guilt and shame about my own ability (read: inability) to perform the expected duties of a mother. Due to my physical disability, my household doesn’t follow societal ‘norms.’ We have our own ‘normal.’ But although I’m aware of that, I nonetheless experience undeserved and unnecessary guilt because I’ve inadvertently placed expectations on myself as a parent; expectations I’m not able to live up to.

photo credit: iStock/CSA-Archive

Most recently, as my body has deteriorated, I’ve stopped being able to cook in our inaccessible kitchen. I started ordering deliveries from pizza places and delicatessens and we began to pick up more and more fast food. I knew my young child was no longer getting healthy meals and therefore was not consuming the necessary nutrients she needed for her holistic growth. But I felt helpless to change the situation. Until one evening, as I watched her eating yet another slice of pizza, I thought, “It’s my responsibility as her mom to make sure she eats healthy. If I can’t cook myself, then it’s still my responsibility to find a way for her to be healthy.”

The next day, I went about a month-long process of info-gathering. I searched for businesses that would deliver healthy, pre-cooked meals to our home. I finally narrowed the list down to two places, one national and one local. My daughter and I decided to try the local company first. We ordered only 2 meals, so we could try them and decide if we liked the food. We did!! So that week, I placed an order for a week’s worth of dinners to be delivered the following Monday.

When Monday dawned, I felt excited but also extremely nervous. I assumed that when the meals came, and I placed them in our fridge, I’d feel guilty that I wasn’t the one who provided them. But, the food came, and I placed the containers in our refrigerator and sat there staring into it at the shelf full of correctly-proportioned, healthy meals. I realized, maybe I wasn’t the one who cooked all this, but I am the one who provided it! I’m the one who did all the research into the various companies who offer food delivery services. I’m the one who ordered the meals. I fulfilled my responsibility as a mom to provide my daughter with healthy food!!

Many times, for me, it’s all about my perspective. When I find myself feeling negative about a situation, there’s nearly always a way to turn my attention to other aspects of it and see the positive side. I don’t need to follow societal norms! I’m not obligated to live up to anyone’s expectations! My parenting shouldn’t be judged based on how I get things done but rather that I do! My daughter and I have been eating delicious, healthy meals now for 3 weeks and I’m proud of myself for getting this done, for making the changes necessary to ensure that her needs are met.

 

*If you’d like a list of companies that deliver healthy, proportioned, precooked meals, feel free to email me at the address listed on this site.*