Tag Archives: special needs

How to plan the best summer vacation despite your chronic illness

How to plan the best summer vacation despite your chronic illness

 

 

 

 

 

 

 

 

Does the thought of taking a summer vacation get you excited or does it send chills down your spine?  I loved traveling before I became chronically ill.  In addition to yearly Disneyland vacations, I loved exploring new areas in other states or within the ones that I lived in.  Weekend road trips without a destination were my favorites.

Soon after chronic pain became a part of my daily life I began to loathe traveling. It wasn’t that I didn’t want to go exploring, instead it became too painful. Not only did my excursions increase my pain while away, it would take weeks and sometimes months to recover from them once I returned home. Not wanting to spend most of my time recovering I opted to stop traveling.

Continue reading

I have a pre-existing condition

I have a pre-existing condition

Like many Americans I have a pre-existing health condition and am worried about what will happen with the latest healthcare bill that our government is trying to push through.  I will be honest, I was never a fan of Obamacare, but there was one thing that I did like and benefited from.  The provision for pre-existing conditions was the best thing about Obamacare.  It helped those with chronic illnesses continue care whether they were forced or chose to change their healthcare plan.

Why the provision is so important

Living with one or more painful chronic diseases is expensive whether our medications, tests, and assistive devices are covered or not.  Continuing coverage makes it less costly.  Even with insurance I have racked up tens of thousands of dollars in medical debt, but that amount would have been much higher without it.  Truth be told, without health insurance I probably wouldn’t have any debt because I wouldn’t have gone to the doctor.  Without continuing coverage I would have been even more miserable than I was and wouldn’t have been diagnosed with other conditions because I wouldn’t have wanted to risk having the symptoms blamed on my pre-existing ones.  Not understanding all that was going on with my body would have prevented me from learning how to treat or manage them whether I chose to do so pharmaceutically or naturally.

Without continuing coverage for pre-existing conditions patients with chronic or terminal diseases won’t be able to afford proper testing, monitoring, or medications that help them live a better life.  I know this because it is exactly what happened to me before Obamacare mandated that pre-existing conditions be covered.  My husband’s employer switched insurance plans.  Employees were not given an option other than to pay the ridiculously high premium of COBRA to stay with their current plan.  If we had chosen COBRA we couldn’t have afforded my medications or medical care, we would have had to give up eating and using electricity to pay the premium.  In order to not live like cavemen and not wanting to hunt neighborhood animals for dinner, we moved to the new plan.  We were immediately told that it would be anywhere from 12-18 months until they would cover my pre-existing conditions. I was lucky to have a fabulous primary care doctor at that time.  He discounted his cash pay rate and instead of seeing me and prescribing my medication monthly, he agreed to see me once every three months, he also was willing to write scripts that I had been receiving from specialists.  Obviously this was before the government cracked down on doctor’s prescribing opioids.  At that time I could have never afforded to pay cash for my doctor’s appointments and full price for my prescriptions on a monthly basis.  Thank God I didn’t have to have bloodwork done to monitor how my meds were affecting my body because paying hundreds or thousands of dollars for lab work was not an option.

 

What will happen if we aren’t covered

Without this provision good people will have to either give up medical care and the medications they rely on or live on the street and go hungry in order to get medical care.  Is that really what we want to see?  Without this provision people will die.  The terminally ill won’t be able to afford to extend their lives.  The chronically ill may choose to commit suicide because they can’t afford what they need for pain relief or complications from their pre-existing conditions will make them even sicker.  Unfortunately, many chronic illnesses have overlapping and similar symptoms and physicians are quick to blame what we have first before searching for new answers. Can you afford thousands of dollars a month in medical expenses?  I know I can’t.  Oh and before you suggest that no one will go hungry or homeless if they apply for welfare assistance, that isn’t an option for many.  Anyone above the poverty level will not qualify for assistance even though their medical expenses would have them living under it.  Another possible outcome of people no longer being assured of continuing care is a higher divorce rate.  Without this provision I wouldn’t qualify for assistance of any kind based on my husband’s income alone. But if we divorced I could keep a roof over my head, food on my table, and receive the medical care I require. Families shouldn’t have to be torn apart and people shouldn’t have to even consider these kind of measures in order to continue their care.  One last thing, just because individual states have the option to keep this provision it won’t help those who live elsewhere or guarantee that those who do live there will be fully covered.  Can you imagine uprooting your life and that of your family just to afford your prescriptions?  Because states would only have a limited pool of resources to fund it, starting over somewhere new is risky as you might not get the care you need after all.

What can we do?

Contact your state’s senators! Tell them that how important this provision is.  Give examples of how losing it will financially ruin you, make it personal.  While I currently treat my conditions outside of my healthcare provider, I am always at risk of having abdominal adhesions from endometriosis and internal scarring severally attack my bowels at any moment and require surgery.  This would be considered a pre-existing condition and would financially ruin me.

Contact your senator today! Click here for a list of United State Senators.


 

 

 


 

 

 

 

 

 

Unpack Your Unrealistic Vacation Expectations

unpack your unrealistic vacation expectations

 

 

 

 

 

 

 

 

Unpack Your Unrealistic Vacation Expectations

Living with multiple chronic conditions has changed many things in my life, including what I expect from a vacation. Psoriatic arthritis, fibromyalgia, and endometriosis often create havoc before, during, and after each trip.  I may not be able to escape my conditions for a week, but I can still have a fabulous getaway by having realistic expectations.  Here are five unrealistic vacation expectations and how I turned them around.

Continue reading

How to survive a Disneyland or Disney World character meet and greet

 

 

 

 

 

 

How to survive a Disneyland or Disney World character meet and greet

me and the incredibles

 

 

 

 

 

 

 

Survive a character meet and greet?  Aren’t those supposed to be fun?  For most people, both adults and children, they are.  It is a chance to meet their favorite characters, get autographs, interact, and have their pictures taken.  But some of us (adults and children) have physical and/or cognitive issues that can easily cause our day to go from magical to maddening.  Some may not like to be touched.  Others may need to be the one to initiate physical contact.  This can be problematic as most characters love to give hugs.  And beware; if one hug could set off a meltdown or cause physical pain, there are some characters that don’t know when to stop hugging or squeezing.  On a few occasions I have exited a meet and greet feeling like I had just been beaten up because the character was overly affectionate. There have been times when I chose to stand to meet a character only to come dangerously close to falling when a character has pulled me in for a hug.  


 

 

 

 

 

 

 

 

 

 

However, there is a way to meet your favorite character without physical or emotional trauma.  Before visiting the parks, think about how you or the person (adult or child) with the physical or cognitive sensitivities reacts to everyday greetings.  Are they in constant physical pain?  Do they initiate physical contact or are they okay with someone else being the initiator? Will they tolerate a quick hug but nothing more beyond that? Will a prolonged physical touch or a rough hug cause physical pain?  When I am experiencing a high pain day, every touch no matter how light feels like a punch.  I could feel bruised for hours or days from the gentlest of hugs.  Do they have a weak immune system, could receiving a hug from a character that has already had thousands of other bodies pressed against it cause this person to become ill?

 

wdw2016171491114224

 

 

 

 

 

 

 

 

 

 

 

Next, write a list of what would make the meeting more magical.  Keep it simple.  No touching, handshake only, be gentle, one hug, etc…   Depending on how many characters you or the guest with sensitivities is planning on meeting, you may want to print out the requests.  This would also be beneficial if the person will be meeting characters with other party guests and not always you.  Whether you print it out or not, make sure that everyone who could possibly accompany said person to a meet and greet is informed of the requests.  When you arrive at the line for your chosen character, you will see that they always have a cast member with them.  Some have several cast members in attendance.  Be sure to inform the first one you see of your requests.  They will then inform the character prior to your turn to meet the character.  

By following this simple tip, you can avoid messy meltdowns and physical pain.  Find out how to have a most magical Disney vacation by discovering what you should know about visiting the parks with a physical disability, chronic illness, special needs, a service dog, and more by reading my Disneyland attraction posts.  Information about Disney World attractions will be coming soon as well as a tool to help handicapped guests in both parks.  Visiting with a handicap of any kind can be daunting, but when you know what to expect in advance you have that much less to stress about.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Tips for staying cool this summer

10968345_10205966396497943_6210273592323723922_n

Summer has arrived!

I have a love/hate relationship with summer.  My bones appreciate the increase of temperatures, but not my nerves or muscles.  Over the years my level of heat tolerance has decreased. However, I refuse to allow my body to keep me from enjoying this season with these few tips.

  1. Go to the beach early.  By arriving early it is easier to find parking that is close to the beach and restrooms.  I also avoid the afternoon crowds and the noise that comes with them.  Arriving early allows me to relax and take in the sound and smell of the ocean.
  2. Plan to arrive at Disneyland before the parks open.  Like going to the beach, an early arrival means access to better parking, less crowds, cooler temperatures, and the opportunity to do more than if I arrived later in the day.
  3. Icepacks. I always keep instant icepacks in my bag and pliable icepacks in my freezer at home.  The instant icepacks are wonderful when I am away from home and feel like I am over heating.  I use icepacks at home to lower my body temperature.
  4. Dress in layers.  Summer means hot outdoor temperatures and freezing indoor temps.  To avoid the shock of going from one extreme to the other, I dress in layers that will provide my body comfort in either temp zone.
  5. Always bring a pair of soft slippers or socks in my bag.  This may sound silly when it is 105 degrees outside, but my feet are always thankful for them when I am spending time inside a public building that is frigid.
  6. Carry a personal mister.  This is great for the beach or whenever I am going to be spending time outdoors and finding air conditioned relief is not an option.
  7. Drink lots of water!!  People laugh at the amount of water I always bring with me when I leave the house, yet end up asking me for water when they ran out or failed to bring any.
  8. Listen to my body and know my limits.  I have been chronically ill long enough to know my body’s warning signs when it has had enough of the heat.  As soon as these signs begin to present themselves, I call it a day.  I used to love swimming, but my nervous system can no longer handle the shock of the cool water.  Instead of staying out of the pool completely, I spend my time floating on a raft.  By doing this I am able to cool, off as some of my body is getting wet, and enjoy time with my family without suffering from additional unwanted nerve pain.

How will you be spending your summer? How will you be keeping cool?  Do you live in southern California or are planning on being in the area this summer? Join me and others with disabilities, chronic illnesses, or special needs and our families for a day at the beach!  See the event page for more information.

Wishing you a day filled with gentle hugs and many reasons to smile!

The Disabled Diva

disclosure

 

 

The Disabled Diva’s Unofficial Disneyland Vacation Planning Guide

Are chronic conditions or disability keeping you from planning a Disneyland vacation?

Guests of Disneyland should enter the gates ready to have fun, not fretting over trying to figure out what they will be able to do or how to navigate Disneyland’s handicapped system.

Disneyland’s handicapped system was frustrating even before they made it more complicated.  The changes made take time to get used to, time that most don’t have when on vacation.  I don’t know about you, but I go on vacation to have fun, not to be stressed!  Since the changes to the system went into effect a couple of years ago, I have had countless people stop me in the parks asking if they could do this or that.  Most have no clue how the handicapped system or queues work, let alone which rides or attractions are wheelchair friendly.  Not only do I get stopped while in the parks, I also receive questions from readers on a weekly basis.  Then one day it hit me! Wouldn’t it be awesome if these people could have access to this information prior to arriving at Disneyland? And that is why I wrote this guide.

 

 

While Disneyland provides basic accessible information on their website, it fails to fully explain how the system works.  This is why this guide is a must for anyone with a chronic condition or disability.  I expand upon the basic information and leave no doubts as to how to enter, board, and exit each attraction.  After reading this book, you will fully understand how the virtual queues work and what to expect when visiting with a disability.

I wish I would have had this information long ago, as it took months for me to figure it out the new system.  Don’t waste your precious vacation time by trying to figure out what to do and where to go!  Order your copy today!

Download your free copy today!

Wishing you a day filled with magical memories!

The Disabled Diva

disclosure

The Disabled Diva and Disneyability are not affiliated with the Disney Company or Disneyland.

Berenice has Disney Ability!

IMG_2953

This week I would like to introduce you to one of my DisneyAbility readers/followers, Berenice R. from El Monte California and I am excited to share her experience with you. First let me tell you a little about Berenice. She is 32 years old, lives with multiple health issues, and is co-owner of Two Sisters Plan.  She was diagnosed with Mathis Gravis Disease at the age of 16, Rheumatoid Arthritis at 19, and has had to use a wheelchair full-time, due to not having any cartilage in her knees, for the past 8 years.  Because she is unable to walk or transfer out of her wheelchair, the thought of visiting Disneyland made her anxious and is why she has avoided going for the past 12 years.  She is married and has an adorable 7 year old son with special needs.  While interviewing her, I discovered that she is my disabled soul sister… Not only did she find the courage to plan a trip to Disneyland with everything I mentioned above, she planned her visit just four days after having surgery for a colostomy bag!!! It was nice to hear that I am not the only one who has refused to cancel a day at Disneyland just because they had surgery.

Berenice, her husband, son and a few other family members planned a one day visit.  Like me, they live fairly close to the park and were able to drive themselves.  They arrived early on a Friday.  Because her son has special needs their first stop was to Guest Relations to obtain DAS (Disability Access Service).  Berenice would not need DAS for herself as her wheelchair makes her disabilities visible to cast members.   Because Guest relations offers different means of assistance based on individual needs, I asked about how they were able to accommodate her special needs son.  In this case, they were instructed to visit the DAS kiosk located in the land of the ride that they wanted to go on and they would be given a time to ride.  When their time arrived, they were to go straight to the handicapped entrance where they would be scanned in.    This is also fabulous for families that have a special needs guest.  I can only imagine how many melt downs have been prevented by having them receive their return time away from the attraction.  With this system, the guest with special needs doesn’t see the attraction until they are ready to ride!  Berenice said that the cast members at the kiosks were absolutely wonderful! This differs from those of us using wheelchairs, as we go straight to the handicapped entrance to receive our return times. I contacted Disneyland Guest Services to see if guests using mobility devices like wheelchairs could also use the kiosks.  Unfortunately guests with mobility devices still need to get their return times from the handicapped entrances.  This isn’t really too much of a problem for most rides, but it would be really nice to not have to roll through the sea of guests exiting Space Mountain just to receive a return time.

 

 

 

One of Berenice’s fears was that she would never be able to ride an attraction with her son by her side because of her inability to transfer out of her wheelchair.  The first ride they chose to go on was Buzz Lightyear’s Astro Blasters.  This attraction allows guests to remain in their wheelchairs.  *Side note, she had considered renting an electric scooter instead of using her manual wheelchair that day, but thankfully she didn’t because she wouldn’t have been able to ride this attraction with one.  This attraction requires guests with an electric conveyance vehicle to transfer to a manual wheelchair. I suggest only using an electric scooter if you are able to transfer.* She shared that the process of having her husband push her into the ride’s accessible vehicle was easy.  A tear ran down my cheek when she shared her joy of not only being able to ride this attraction while remaining in her wheelchair, but that her son was able to sit next to her!!!!!

smartselectimage_2016-03-28-10-43-41.png

Berenice was blown away by how wonderfully accommodating Disneyland was in regards to her and her son’s needs.  She was even more surprised by the kindness of other guests.  While on their way out they decided to stick around to watch Paint the Night.  Because they didn’t arrive earlier to claim a spot to watch from or purchase a meal package that comes with reserved seating, their only option was to watch behind a row of standing guests.  The guests surrounding her made room to push her forward so she could see when the parade began!

She shared her frustration about two issues that I always deal with in the park.  The first is that there could be 20 empty restroom stalls, yet still having to wait 10+ minutes for a woman and her child (ren) to exit the handicapped stall.  This drives me crazy too.  The other issue was with other guests not paying attention to where they were walking and running into her.  Thankfully these issues were not enough to ruin her day.

Whether she realized it or not, some of the decisions she made were why she had such a fabulous visit.  She prepared for additional pain by bringing along extra pain meds.  Even though she didn’t need them, she had the assurance that they were available if needed.  She was realistic.  She didn’t over plan her day.  Nor did she have any fantasies of being able to do what her conditions would not permit.  The fact that she acknowledged when she was done going on rides played a big role in her day.  After riding Buzz Lightyear, she felt extremely dizzy and decided that she was done riding even though that was the only ride she had been on.  I applaud her for recognizing her limit AND for NOT letting it ruin the day for her or anyone else in her party.  While she only rode one attraction, her son rode eleven!!   The hugs and smiles from her son as her exited every ride is what made her day and filled her heart with magic.  Having an entourage was also a smart move.  For people like Berenice and me that require someone else to push us throughout the parks, it is important to have more than one helper.  While not impossible for one person to push all day long, it is nice to have two or more people willing to take turns.  Because maneuvering a wheelchair through the crowds at Disneyland is no easy task, you will also want to make sure that the people volunteering to help are able and ready for a challenge.

Berenice said that my posts regarding Disneyland gave her the motivation and the confidence to take the plunge and visit the Happiest Place on Earth.  Her experience was so fantastic that she is planning to return in the future.  This is why I blog about visiting Disneyland with disabilities and chronic conditions.

Have a question about visiting Disneyland with a disability? Contact me and I will do my best to help you plan a magical visit!

The Disabled Diva

disclosure

%d bloggers like this: