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!

 

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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.*

Walkin’ & Rollin’ Thanks to ADA!

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Before I became disabled, I knew what the Americans with Disabilities Act (ADA) was and the reason it was implemented. I understood on a cognitive level why it was important. But when it’s significance became personal to me, the journey from the head to the heart was complete. Now, as a parent with a disability, the ADA is vital in the day-to-day lives of me and my child. For the purposes of simplicity, I’m going to focus on the area of the ADA which most effects me as a disabled parent – the compliance of public buildings, parks, venues, etc. to grant me complete participation in the activities which the business provides. Public places are required to make sure that I’m able to share experiences with my able-bodied peers in equal measure or as close to it as possible. I’m not to be denied the ability to either access or use public facilities.

As a parent, these ADA requirements mean the most to me. I’ve dealt with feelings of guilt a lot as a disabled parent. I want the most typical childhood possible for my daughter; I don’t want my physical limitations to limit her engagement or enjoyment in kid-centered activities; I’ve worried about her having consequences for something neither of us has any control over. Unlike my able-bodied friends who are themselves parents, I’ve shown up to a few birthday parties for my child’s friends and not been able to enter. We’ve arrived at parks and have not been able to play on all of the equipment because I could not access the areas. My daughter is currently 5-years-old so you can imagine the disappointment and, in the past, the lack of understanding why we had to leave without doing what we’d gone there to do. Each time this has happened, my heart has broken for her and I’ve felt nearly crushed by guilt and the realization that it’s all my body’s fault. There have been times I’ve managed to push through the pain and mobility difficulties so that she can have fun but those times have been rare.

Handicap_Accessible_SignWith accessibility issues becoming more widely recognized and businesses making necessary structural changes in order to meet the needs of the entire public, my daughter and I are able to do more and more. We’ve taken advantage of modifications at the skating rink so I could roll along with her on the rink; we go to theaters that have wheelchair seating in the front or on the sides as opposed to in the very back where our view is hardly worth the price of admission; we go to a local park that’s well-paved around the playground so I can keep an eye on her while she plays; we go to the library; and recently spent a week at the beach together thanks to the city’s efforts to make the area more accessible!! Also, at birthday parties that are held in bouncy-place type venues, arcades and other exciting kid-friendly places I’m able to enjoy the fun right along with my daughter and the other parents.

I would like to see stricter ADA guidelines and enforcement in the future. However, our society has come a long way and I feel grateful to live during a time when awareness, advocacy and education concerning the disability community are flourishing. My hope is that I can be a part of the ongoing changes and positive impacts made for people with disabilities. I hope an able-bodied person will read this blog and try to empathize with some of the feelings and situations I’ve mentioned so that they might understand the importance of the ADA not only on a cognitive level but on a spiritual and emotional one as well.

Thanks to the ADA I have rights, I’m protected and I’m free to be who I am – not stunted and fettered because of what I have, a disability. Because of the ADA, my daughter and I are able to enjoy family outings, have fun and “walk & roll!”

 

**This blog post first appeared on The Disabled Parenting Project – http://disabledparenting.com/walking-rolling-daughter-thanks-ada/ **