Tuesday, May 31, 2016

Cities Are Not Truly Accessible For Disabled Individuals

Like any other group of young women, my friends and I enjoy a good adventure. We are similar to most mid twenties tourists, excited about the many shops to peruse, landmarks to view, and little hole in the wall bakeries to visit! Only, there is something that separates us from every other tourists out and about -- my friends and I are all battling serious illnesses which leave us bound to mobility aids, and medical equipment. Two women in our group are wheelchair dependent, and I myself require supplemental oxygen which is dragged behind me on a cart. 

It quickly became apparent while we traveled the cities, and their most popular destinations, that the majority of locations were not made properly handicap accessible. While the ADA claims that all cities are required to have specific pedestrian accommodations for disabled individuals which aid us in our travels, we found the accommodations to be anything but adequate. Particularly, when it came to the side walks, and curb ramps, we found the ADA requirements were simply not met in almost every area we traveled to. Curb ramps were too narrow, too lopsided, too steep, or completely unusable due to damage. I watched as my two friends struggled to ascend and descend these treacherous entry and exit points to the safety of a sidewalk. I mentally cringed each time their wheels would dip due to an uneven sidewalk, or when the angle of a ramp would bring them too fast into the road. Perhaps worst of all were the extremely lopsided curb ramps that left one wheel in the air with the other still on the ground! Luckily there were kind passerby who saved my companions from a few messy wheelchair mishaps. Unfortunately, not everyone shared that kind of compassion for those of us struggling to travel a supposedly 'accessible city'. 

As we neared a ramp to travel across a busy down town street we found ourselves fully blocked by a large black SUV flaunting an Uber Driver decal. The little black box across the street deemed it the pedestrian turns to travel by displaying a brightly lit walking man; however, my friends and I couldn't exit the curb due to this large vehicles position in front of the curb ramp. I attempted to communicate with the driver, who refused to roll down his window. At this point I was a tad bit frustrated. I attempted to express we couldn't cross until he moved his SUV with hand motions, and loud "speaking", but my efforts fell on uncaring ears. We watched as the pedestrian signed turned to a bright red hand, expressing we had missed our turn to cross. I continued in my attempt to communicate with the driver through his tightly shut window when his passengers walked up behind us, "Um excuse me that's our Uber" said the first man. Trying to explain the situation to the group so they could help us explain the situation to the driver, the man looked at us and said, "well we need to get in, that's our Uber." I stared at this man shocked, as we waited for the party of at least six people to pack into the vehicle as we missed yet another pedestrian turn to cross. 

Situations like this are not only highly illegal, but extremely demeaning to disabled individuals. We are just like any other travelers, hoping to enjoy our experience with friends, yet due to our mobility aids, are treated as less than human. Someday I hope to see city improvement on sidewalks, especially curb ramps, so groups of individuals like ourselves can enjoy a trip without complications. I would also like to see transportation services have better training on where they can legally park their vehicles while passengers board. 

Sunday, May 22, 2016

Five Myths Disabled Patients Desperately Want Debunked

As a young woman battling serious illness, with multiple hidden medical devices, I have found there is a high incident rate of unnecessary, and hurtful comments by those assuming I am not sick. This encounter seems to be a reoccurring experience for many patients battling hidden, or invisible disabilities. After surveying a small population of chronically ill individuals on Instagram, it seems there are five specific stigmas that patients desperately wanted dispelled.

1. Wheel chairs are only for paraplegics. There is a large stigma surrounding wheelchairs and their uses. Many people believe these mobility aids are for patients completely bound to the chair, with an inability to leave it. This is in fact only one use of a wheelchair, and a very narrowed view of its capacity to bring mobility to individuals. Wheel chairs are mobility aids, meaning, anyone needing assistance with mobility can benefit from there use. Whether it be severe fatigue, neuropathy, muscle weakness, joint pain, or a connective tissue disorder making the body unstable, many individuals require the use of mobility aids. These patients might not look ill, and may even be able to walk seemingly normally, however, that doesn't mean they can walk for long distances, walk without causing extreme pain, or walk without damaging their bodies. These patients may use wheelchairs while out shopping, on a vacation with family, or while attending a long event. On good days you may see these individuals without the aided mobility of their chair but, that doesn't mean that tomorrow they wont need it.

2. Disabled parking stalls are only for those with mobility aids. This is a myth that causes so many patients already battling emotional trauma due to serious illness unnecessary distress from cruel comments. The majority of patients prescribed handicap parking stalls have an invisible disability, meaning, you cannot see their ailment. The use of a mobility aid such as a wheel chair, walker, or crutches is only one of the criteria that qualifies an individual for these parking stalls. The Department of Motor Vehicles expresses the qualifications for a placard vary by state but, some of the medical conditions that could cause you to receive a placard are as followed: 

This list, while unspecific, gives great examples of conditions you would be unable to see, but would cause the individual an inability to park at the back of a crowded lot. Cancer, cystic fibrosis, congestive heart failure, pulmonary fibrosis, COPD, and neuromuscular disease are just a few of the conditions that could be incorporated in this list that may not requirre the aid of a visual device, but absolutely would require that the patient has a closer parking spot. Never judge an individual by only what you can see, they may be hiding more than you know. 

3. Service animals are only for the blind, and must wear a vest. As the need for daily assistance has increased due to the high prevalence of serious illness in this country, many individuals have turned to the use of service animals. A service animal is defined under the ADA as, "a dog that has been individual trained to do work, or preform tasks for an individual with a disability." Source: http://www.ada.gov/regs2010/service_animal_qa.html#def 
Today many patients battling illness benefit from the use of a service dog that can alert them of an impending medical situation. Dogs can be trained to specialize in many different areas such as: diabetic alerts, severe allergy alerts, visual assistance, hearing impaired assistance, mobility assistance, psychiatric assistance, seizure alerts, or medication/injection alerts. Pups will undergo years of training in order to properly alert their owners of these conditions, which in turn creates a better quality of life for the patient. While many owns who possess service animal may look completely normal, they are battling disabilities that require assistance they cannot provide themselves. Please keep in mind that you may not be able to tell this animal is on duty if the individual doesn't have a visible disability, especially since there is no ADA requirement that states a service animal must wear any form of distinguishing ID. Always use caution before petting an animal as they may be executing a life saving task. 

4. Handicap restroom stalls are only for those with mobility aids. This is another myth where patients suffering invisible disabilities take the brunt of hurtful comments directed out of ignorance. Handicap restroom stalls, while made large to accommodate those with mobility aids such as wheelchairs and walkers, are not only for that purpose. These large stalls are also to accommodate patients that need extra room to preform tasks such as draining an ostomy bag of fecal matter, voiding a drainage bag of urine, or even releasing stomach acid by a tube fed patient. These stalls are also used by those that need the aid of a bar rail to access the toilet. Though the patient may look like a healthy individual, they may have a medical device hidden under their clothes, or have a disease that caused deteriorating joints. Please be respectful, and null of judgment when someone exits a handicap stall.

5. If you aren't obviously ill you do not have a serious disease. If you have read all the way to number five you have more than likely seen a theme throughout this post; invisible disability is misunderstood. Many ailments, conditions, illnesses, and diseases are often well hidden. While that lovely young woman pulling into the handicap parking stall may look like a flourishing, well put together individual, she could be battling for her life with medical devices hidden right under her clothes; a feeding tube, central line, ostomy bag, and catheter are just out of site. That young gentleman with an adorable furry Labrador may look like he is simply taking a walk with mans best friend, but wait another moment and the dog is now visually disturbed, attempting to alert his owner of an oncoming seizure. The middle aged man walking into the handicap restroom stall may have serious muscle weakness from a degenerative illness causing him to need the hand rails to pull himself up off the toilet, and the beautiful college student using a wheelchair may have lung disease and cannot breathe well enough to make it across campus on foot. Never be quick to judge those around you, as they may be fighting a war within their bodies you simply cannot see. 

Thursday, May 19, 2016

The Elephant Trunk -- Health Update

Last night was quite a wild ride. While having some delicious soft serve ice cream at Dairy Queen with my good friends, and husband, I felt a "pop" in my stomach after laughing a bit to hard at an internet comments thread. Water gushed out of my stoma all over my pants, and I immediately knew that the balloon holding the feeding tube in my stomach had popped. Oops!
I quickly went home and took the feeding tube out to replace it with my back up -- and found that I had no back up! BIG problem. Stomas (medical holes in the body) close extremely quickly, and without a tube to put into the gaping hole in my abdomen it would quickly close which would mean surgery to reopen it. I wracked my brain and decided the best option was to stick something in the hole. (Hardcore I know lol) I ended up sticking an extension set inside the stoma which fit perfectly! It was a bit odd and uncomfortable, but better than a second surgery!

It was about 10pm by this point and my gastro's office was closed so we packed up and headed to the local hospital to wait in for a tube I could place. I would bleeding pretty profusely and looked like a bloody mess holding my abdomen! haha Poor random people waiting in the ER were probably really freaked out! After two hours of waiting while more serve cases were triaged, I finally made my way back into a room and requested a feeding tube. Luckily, the emergency department had one on hand that could be placed until I can re-order the tube I normally use called an AMT Mini One Button. Unfortunately, the only tube they had on hand is the size of an elephant trunk, leaks, and makes me smell like barf all the time.

Here is a fun size comparison of my old tube vs the temporary one. The old tube looks much like a beach ball top that just sits on my stomach, while the current tube has a long hose hanging out the abdomen. You can see why the current is not my favorite accessory. My new tube should be here early next week - hopefully. Life is always an adventure when you're tube fed!

In other REALLY exciting news I recently found out I have been granted a wish from the Do It For The Love Foundation! They will be sending me to a concert of my choice (near my home), and possibly to even meet the artist! Thank you to my incredible friend Michelle for nominating me for this amazing opportunity! I will keep you all updated on the wish process! For more information on their foundation, or to nominate a patient in need of the healing power of music visit their website! (Link above)

Sunday, May 15, 2016

Cytoxan Round Eight - Health Update

I finally feel like I am in the final lap of my treatment! The dose is lowered, side effects are more manageable, my hair is coming back, and we are no longer pumping me full of a drug I am allergic to. Only four more rounds to go, which means I will be all finished up by fall! While Cytoxan has been absolute hell, it has completely turned my life around. I finally feel like I am gaining control of my body after almost 5 years of watching it slowly slip away with failed treatment, after failed treatment. I am able to eat quite a bit by mouth now which makes me just ecstatic! Swallowing is still a major difficulty, but my lower organs are working enough to digest many foods. Omelettes, yogurt, oatmeal, soft cookies, ice cream, almost any drink minus heavy carbonation, etc. are all going relatively smooth! I quickly found out while experimenting that anything with seasoning, especially ethnic is an absolute NO GO! How did I find this out? ....I crapped my pants at the mall after trying some food I shouldn't have. Super glamorous I know. lol

But, lets get back to the Cytoxan! Round eight went off without a hitch once we nixed the Mesna. Since I had to stay over hydrated and attempt to pee every hour I didn't get much sleep for a few nights, but that's okay because my bladder is worth it! The nausea was much more bearable at the lower dose, though I still needed help from cannabis to not vomit.

This last week I also saw a specialist equip to deal with my odd sleep paralysis/psychosis incident. He was absolutely INCREDIBLE and had an answer to every last minute of that episode. He explained it like this -- there are two states: an unconscious mind, and a conscious mind. When people sleep they dive into the unconscious mind, also known as REM. This is where the body is paralyzed and the brain is essentially shut down. Due to all my health issues I never fully reach REM; my sleep habits keep me half conscious/awake at all times. Sleep paralysis happens when a person not used to REM suddenly dips into REM and the mind freaks out and awakes before the body has time to process what's happening. This can lead to extreme states of confusion called sleep drunkenness where the mind essentially logs off since the body cant keep up. You can't remember who, or where you are and enter an altered state of reality where nothing seems real. He explained that due to my many health issues this type of episode will likely happen again as my body attempts to find REM sleep -- and he was right. I had another episode of the sleep drunkenness this week after another bad bought of sleep paralysis. Luckily, he explained to Noel and I how to calm me down and guide me through the episode so emergency services aren't needed.

We talked about ways to improve my sleep habits and he prescribed some new sleeping medication to help place me in REM. I am a tad bit nervous to take them however as they can cause "confusional amnesia states" as a side effect. He said the only way to be sure is trial and error with patients like myself -- so needless to say I still have the bottle ominously sitting in my counter. haha He did however prescribe a small device that sits in my nose and opens my collapsed nasal valves that has already made a huge difference in my ability to sleep!

Have a great week you guys!

Thursday, May 5, 2016

Radio Star Extraordinaire - Health Update

It's been an eventful week. Monday started out with a 3am emergency trip to the hospital with a very distressed Chanel. I should probably give some back story before I divulge into that lovely journey. I often experience something called Sleep Paralysis; this is a phenomenon where an individuals brain is awake, but their body is not. Imagine you awake from sleep to find you cannot talk, or move. You try to scream and thrash but it feel as though someone is holding you down and stuffing a pillow over your mouth. Your chest and extremities are heavy and you feel like you're suffocating. Often times this is accompanied by hallucinations of voices, or odd sensations.
Sounds horrifying right?

It is. In medical literature it is described as: living in a fully conscious, un-wakeable nightmare. Most SP patients experience one terrifying episode in their lifetime, but very rarely a patient has recurrent episodes, sometimes even more than once in the same night -- of course I am the latter. I quite often jolt back into body and mind conciseness screaming bloody murder. (My poor husband.) Typically this phenomenon accompanies nightmares, which makes the situation so much worse.

Monday at 3am my husband woke me, saying I looked distressed. I remember having a particularly difficult episode of SP before I was awoken. He said I sat straight up and began to cry. From the moment I woke I was in an altered state of mind, unable to retain any short term memory, and in utter confusion. Noel said I kept mumbling "somethings wrong," "how did I get here," "what's happening." Twenty minutes into trying to calm me he decided to pack me into the car and head to the emergency room. Apparently I was not an easy patient as I was extremely disoriented and had no idea how I had gotten there. I knew who I was and where I was, but had no recollection of the events that brought me to that point in time. From a medical stand point it would more than likely be described as Psychosis. This altered state lasted three horrifying hours. Eventually the emergency team pumped enough anti-anxiety meds that I fell asleep; upon waking I was back to normal. The physician described the situation as an acute panic attack form a particularly severe episode of SP; however, I am not sure I am comfortable with that diagnosis. I decided to branch out for a second opinion of my issue and was told it was less likely a panic attack, and more likely a psychiatric sleep disturbance. Luckily, their is one specialist in the state of Washington that deals with such issues and he is located about 20 minutes from my home! Hopefully he can explain this odd occurrence of my altered state, and we can leave this all behind us. It's pretty unnerving to feel so out of control. I have never experienced anything like this in my life, and I hope never to again.

Due to a condition called Angioedema, my face swells up when under great stress. You can bet this episode caused my condition to flare, and my face to look like a ridiculous puffer fish. (Honestly, I could barely open my eyes they were so swollen.) I had a local Seattle radio interview scheduled for that morning and you bet I wasn't going to miss it just because I was in the ER a few hours before! lol I attempted to slap some make-up over my puffy eyes and ran off to record my interview! It went super well and I had an absolute blast with the host of Uplift Radio 1150 KKNW. Listen to my interview here: Chanel White On Uplift Radio
(Yes, it is the correct link for my interview -- There is a small intro for another speaker, but my interview starts at 1 minute and 50 seconds! It's about 45 minutes long.)

In other news, we finally got the whole Mesna allergy situation solved. We have decided to move forward without the Mesna at all. While yes, this drugs function is to protect the bladder from Cytoxan, it is not a "guarantee," and more of just an "added bonus" to a heavy saturation of IV fluids.  While it's absolutely preferred to have both fluids, and Mesna when receiving Cytoxan, it is possible to receive the infusion without it. We will keep my Cytoxan dose low for now to see how well I fair without the Mesna, and if I tolerate it well, possibly go back up to my full dose. I am a tad bit nervous to continue without this drug, but I guess it's better than anaphylaxis!