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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Back in Action…

So, it’s been several months since I’ve written anything. There have been 2 main reasons for this; one being positive and the other, not so much. As an optimist, I’ll start with the good news! I HAVE GONE BACK TO WORK! Yes, I now work for a Treatment Center specializing in drug and alcohol rehabilitation. I am thrilled – I’d wanted to work in either the field of recovery or disability. I thoroughly enjoy my job and get along splendidly with my coworkers. The facility also made physical accommodations to make my office and the restrooms more accessible for me.

The other reason I’ve not been writing as much is due to regression in my neck. I will be having surgery in mid-September to take out 2 discs. I’ve been in a lot of pain and also deal with tingling & numbness down my right arm into my hand.

I want to add that since I last blogged, I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS). After my diagnosis, my daughter was also diagnosed so we’ve been having to make some lifestyle changes. I reveal this because it may sway what I write about in the future.

Other than all of that, I’m hoping to catch up so-to-speak. Hopefully, you’ll be reading more from me, ModifiedMama!

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!