Showing posts with label Chronic Fatigue Syndrome. Show all posts
Showing posts with label Chronic Fatigue Syndrome. Show all posts

10 August 2018

Fibromyalgia Friday

Happy Fibromyalgia Friday. Here are some of my favorite new quotes:




Hope these have been encouraging to you. Have a good day.

09 August 2018

Chronic Illness: Dreams and Depression

Happy Thursday my friends. Sometimes I find myself floundering these last 3 1/2 years. Come November it will be 4 years since I first got ill, first with tonsillitis and then chronic fatigue syndrome (later diagnosed as fibromyalgia). 
Since I cannot work nor finish my dissertation, at times I feel very depressed and lost. There were times when I felt especially lost because I could not drive myself outside and was reliant on medical transport to get to the doctor's office or friends to come visit me. Thankfully I have been able to move on from using medical transport and my wheelchair. I can even drive around town on a good day and sit through a theatrical performance. Yes I am usually incapacitated the day after but it's so important to feel some sense of freedom and enjoy opportunities for pleasure. And I don't even know what I would do without my beautiful dogs and family. Their love and support means so much and is able to bring a smile to my face even on the dreariest of days.
But what i meant to say before I got longwinded was that my therapist this week asked me why I could not start working on my dream. At first I thought it was laughable but heck, why not? I might not be as capable as when I was running around London and studying for my degree. But I do have a mind, sluggish as it might be, and so why not do some investigative work and poke around at fulfilling my dreams? Just because one is disabled and incapacitated in many aspects does not mean that I cannot dream and make the most of whatever this is.

Surely there is a purpose, yes?

20 July 2018

Blogging With a Disability

Disclaimer: This post contains affiliate links.

Four years ago I was living life to the fullest believing my dreams were about to explode with rainbows and pixie dust and etcetera. Turning thirty years old I believed that it was going to be the best year of my life. It was indeed a fabulous year in London going to grad school and learning in some of the greatest museums and galleries of the world with an international cast of classmates and new bffs.

Fast forward to November 21, 2014, and I woke up to a nightmare. I could not feel my feet nor fingers. I couldn't see clearly and my eyes were burning for no apparent reason. My brain was overwhelmed in the midst of a fog I could not seem to escape. And worst I could not walk or move without intense pain. I was literally crawling from my bedroom into the kitchen for a glass of water I could hardly even hold. Welcome to my new "normal".

It's been almost four years and while some things have gotten better others have gotten worse. Even my primary physician says I have regressed in several areas. Ah, life.

Dragon Professional Individual for Mac 6.0 (Physical version)Because of my pain in my arms and hands, I can hardly type due to pain and numbness. I try to use Apple's free dictation app for my blog posts, emails and Siri dictation services on my iPhone for my tweets and facebook posts. Unfortunately the Apple dictation app on my MacBook is devious and will constantly delete what I've already dictated, and write things I never said. Talk about wanting to bang my head against the keyboard.

Trying to figure out a way to get Dragon Professional Individual for MAC. Even my therapist is telling me I need to get it... If only it didn't cost so much for the Mac version.

I have tried to look for alternative ways to blog. There's been my attempts at vlogging on YouTube but the setup and then the editing and posting is draining and difficult on the arms and hands and brain.

So here are some of my favorite tips for blogging with a disability:

The most recent tip I have tried is to create several posts in advance and schedule them for future dates. I love this!! It allows me during a "good" hour to create some blog posts that can come out later when I am not necessarily able.

Copy and paste. Nobody says you cannot copy and paste previous work to use as a template. Also when I am sharing calendar information, it is perfectly ordinary to use the script they've created as a starting place.

Do you have any tips? Suggestions?

Until next time,


09 July 2018

Fibromyalgia: A Good Day

FYI: For any new readers, thanks for visiting! And many pardons in advance for errors because I use a dictation app to write my posts due to my pain.

After my last post on my Fibromyalgia frustrations you probably are wondering what I would consider a "good day"...

Man, that is a really tough one! Today I was reading an article on questions to ask your doctor about Fibromyalgia and Chronic Fatigue Syndrome (another diagnosis that's been floated around) and I wanted to hurl. It was so sad and depressing to read questions such as whether I should take my medication and when I'm having a good day feeling fine. I wanted to laugh, cry, hurl, et cetera. What gibberish to say that I was having a fine day and didn't any my medication. With my medication I'm lucky enough to feel a level VI pain on a good good day. And Yes I was a deliberate good good day. LOL. But the truth is I don't know what it means anymore to feel fine. I don't know what I mean to say is this too much exercise? I don't know what it means to Question how much is too much. Actually I do know that question. There are times when I wonder are you going grocery shopping on a Saturday with my dad that will have me incapacitated for the rest of the weekend. Or whether going to retirement party at a friends home will be too much and cause me to have anxiety, excessive exhaustion and horrible pain otherwise can be avoided. So yes I do know the latter question but I wish oh yes I wish that I knew the question of can I take my medication on a fine day when I don't feel like I needed. That would be a fabulous day.

But we are speaking in real terms and so I will describe today what a good day is. Yesterday I had a good day. I rested in the morning, Took my medication, petted the dog, did a little Google research of no importance, made lunch, and managed to shower. All before 4 o'clock in afternoon. And this was thankfully a good day and gosh darn it I lost my page again. I am just complained about how much I hated dictation app because I'm always losing my space, having my work deleted, or being transferred to a completely different page that has nothing to do with my. Post. And guess what it happened again. So let's try to keep this short or I might go crazy LOL. So mom suggested we go to see a movie to get out of the heat because our home does not have air conditioning. Heat wave days are the worst especially because of my heat intolerance in combination with the lack of the cool air. So we googled movies playing and I am woefully out of touch with what is playing currently. We decided on Antman, bought our tickets online and headed out to them mall. I am thrilled to say we found a parking spot in the very front of the lot's. Thank God for my handicap placard and for perfect timing. We parked and walked over to the red Robin next to the movies. Somehow I must've been woozy and more uncorrelated on my feet than usual so walking with my cane was quite amusing. Thankfully no one was tripped away needed to our destination in one piece. We were seated at a booth which is always my favorite meaning I can stretchout my legs to the other Seat and propped my elbows and wrist up on the table. Yes I probably would not work in a fine dining restaurant but this was a chain burger restaurant. Perfect for slouching getting comfortable or at least as comfortable as can be in a public environment.

After dinner mom and I went to the movies discovered our seats were upstairs so thank the Lord there was an escalator so up we went. I was doing pretty fine after our dinner so we settled in to the so Called recliner seats which were really not. The good thing about our seats was that because they were in the front row of the balcony I was able to stretch out my legs and I was able to use the armrest for my elbows and wrists. So we settled in and had some good laughs watching Ant-man. Gosh darn it. Fails me once again. Okay back to the story. As far as comfort goes I would rate these chairs a C. They were comfortable like sinking into a couch and had the necessary armrest. Unfortunately they did not recline so my neck and back suffered more than I'd hoped. The tough part was when the movie was over I was pretty week and unbalanced getting up. So took a little maneuvering to get out of my chair and out of the Cinema. We walked slowly back to the car and by the time I had open the passenger door I was counting my lucky stars that moms car was so close. I don't know if I could've walked anymore steps. What's that saying, God only gives you as much as you can handle? Was quite true in our case that evening. So we headed home I grab my ice pack my pillow and laid down to cuddle with my dog as much as he will let me. That my friends is what I would call it a good day. My pain level was primarily at a low of six. I was with my mom. Being with people is always a blessing. I did something different that I can't even remember the last time I did by going to dinner and a movie. I Lived to tell about it. That is a good day.

What is your idea have a good day? Feel free to sharing the comments below as I go get a fresh ice pack and some more medication for my pain LOL. Hey I didn't say life is perfect or even back to what I would call normal but it's something. Days like these I think of when I'm feeling exceptionally frustrated with my situation. Until next time xo.

PS thank you for overlooking the errors due to my using a dictation app.

05 July 2018

VLOG: Chronic Illness + Socialization

Bonjour! Hola!
With the recent holidays just past I thought it was a good time to share about the exhaustion that comes from socializing for anyone with a chronic illness such as Fibromyalgia, Chronic Fatigue Syndrome and/or MS... Think it's easy for someone like me to come out and visit over a bbq? Think again...


22 September 2017

Chronic Illness: Feeling Low?

HI folks. If you are like me, you probably have terrible bouts of loneliness and depression. Not fun. But the good news is that there is always something worth smiling about and worth looking forward to. But we just have to remember, right? That's the tough part.

So hopefully this short video will be encouraging and so will these quotes I have found for you tonight.
YOU ARE NOT ALONE.








xo Joy


01 July 2017

Disney Drama Continues!

After my latest post yesterday about my discrimination by Disney Public Relations because of my disability, I wanted to give Disney Public Relations a chance to respond. Only fair, right?

Here is the e-mail I sent them:
Hi DLR Team,
Ever since ... accepted my media request in 2015 to review the holiday experience on my Vlog, I have had 3 denials from Disney in the last 8 months to review the disability accessibility experience on my blog and I kept asking for a reason but received no reply. I also received no replies to the emails I sent asking for details about accessibility. As a huge fan of Disney I hate to think I am being denied because Disney is anti-disability but what other reason should I imagine when I am receiving no information from your team and my queries continue to not be answered.
Please see my latest Disney post:
http://www.thejoyousliving.com/2017/06/is-disneyland-anti-disability.html
Maybe this is something your team should be aware of. Perhaps it is an unintentional slight? As I said, I hate to think anything bad of Disney but what else am I left to think?
And here is the response I received from a Director of Public Relations:
Thank you for your interest in the Disneyland Resort, and the inquiry about the guest accessibility in the parks.

We are happy to share the following information, which is available to our guests and the public. It’s at Disneyland.com, on this link.
https://disneyland.disney.go.com/guest-services/guests-with-disabilities/
Thank you! 
I was shocked and very disappointed when I received this e-mail a few minutes after sending my earlier e-mail. I had explained my "case" and asked for an explanation that would discredit my earlier assumptions. But all I got back from this Director of Public Relations was a form letter. 

Thanks a lot, Disney. :(

30 June 2017

Is Disneyland Anti-Disability?

Interesting...
Memorial Day at Disneyland (2013).
Those of you who followed my short lived Vlog might remember my review of the beautiful Disneyland winter holidays experience in 2015 thanks to the Disney Public Relations Team.  Fast forward a year and a half and I have submitted three requests to Disney to review Disneyland's accessibility for walkers, wheelchairs and those of us who have troubles with standing long due to auto-immune diseases such as Fibromyalgia. Each time I have been denied without explanation. I have replied immediately asking for an explanation but alas those replies have been ignored by Disney's Public Relation Team.

So, it got me thinking that perhaps Disney has something against the disabled and that was why I was denied. Why else would I be denied after being accepted just a year earlier with practically the same statistics (and walking)?
Dapper Day 2013.
You wouldn't think so with the Mouse's dedication to making Disneyland "The Happiest Place on Earth" (for everyone). However, stranger things have happened. I performed numerous internet searches over the last year and a half that I have been trying to get approved by the PR team. Personally my research interest has changed as my disabilities have changed: from 'simply' having Fibromyalgia and not being able to stand for long periods of time in queues to needing to use a walker to needing to use a wheelchair.

When I was researching how best to get around Disneyland with Fibromyalgia or Chronic Fatigue Syndrome, I found several message board postings on the topic and several blog posts about the Disability Access Service Card. But there was NOTHING on Disneyland's website about either disease or any similar diseases. And lets not forget all the lawsuits Disney faces over their treatment of Autistic children.

When I was researching how best to get around Disneyland with a walker, I found fewer message board postings and no blog posts on the topic. And the only thing a search on their website for "walker" brings up is: FAQ: Permitted Items. Ouch! I even emailed Disney Public Relations to ask about how guests with walkers are supposed to get around and if there were limitations on what attractions they could go on, etc. Guess what? I NEVER heard back from Disney. And this was an email I sent twice!

Finally, when I needed my wheelchair, I did another search online. On Disneyland's website, I searched their Services For Guests With Mobility Disabilities page (under Guest Services) and found only information on which rides were accessible and by which means (i.e. ambulatory, transfer from wheelchair/ECV or wheelchair/ECV accessible) and details on the disabled parking options at the resort. But what about information on restaurant seating availability, parade/fireworks watching areas, etc.?

A Google search led me to even more confusing reviews... One blog (10 down on the first page of results) briefly mentioned the Access Service Card, guide maps and the attraction access categories. Another lady (#4 down on the first page) briefly covered the details found on Disneyland's website and offered four tips for Disneyland Resort hotels but that was all. And lastly, on TripAdvisor there were two reviews from 2012 and 2013. The 2012 reviewer was helpful in describing how hard it is for wheelchair users to navigate the queues at California Adventure without banging into the chain ropes. She also explained the craziness at Splash Mountain where single riders were picked before disabled guests which was interesting and good to know! The 2013 reviewer was short and to the point saying that the parks were "not set up very well for wheelchair bound persons."

An interesting article on TIME's website entitled "Does Disneyland Discriminate Against the Disabled?" caught my attention. A lady who needed a Segway vs a wheelchair/ECV was denied by Disney and her case made its way to the federal appeals court.

Ariel's Grotto, 2013.
So what now? After 3 requests for tickets to review Disneyland's accessibility being rejected for no given reason, several e-mails requesting information about guests using walkers/canes, guests who cannot stand for long lengths of time in queues (eg. Chronic Fatigue Syndrome, Fibromyalgia, Cervical Stenosis) and guests with wheelchairs not being answered, I have to wonder does Disneyland have something against the disabled community? And as a last point, when was the last time you saw a cast member at Disneyland or Walt Disney World using a wheelchair or walker? Yes, there was the lady in a wheelchair who was part of the Aladdin stage show. But what about cast members working restaurants, retail shops and/or attractions?

I hope this is just a random experience and everyone else who has requested tickets and/or asked questions about disabilities has been accepted and received responses. If I ever can make it to the parks with my disabilities, I will be sure to let you guys know how it goes! Until then, 

29 June 2016

Vlog: MRI Drama

Hi guys! What a scorcher today. For those of you who have been asking about my health... here is my latest vlog chronicling the *drama* involved in getting an MRI: Brain Scan.


Companies mentioned in my vlog:

Clinicas del Camino Real, Incorporated

Website: www.clinicas.org
Location: Ventura County, California
Insurances Accepted: Medi-Cal, Medi-Care, & Most Private Insurances are Accepted
Recommended Doctors: Dr. Veloso (Internal Medicine)
NOT Recommended Doctors: Dr. Ilona Sylvester (Internal Medicine)

Rolling Oaks Radiology

Website: www.rollingoaksradiology.com
Location: Ventura County, California
Insurances Accepted: "We also accept many indemnity insurance plans, Medicare, workers’ compensation and personal injury liens."

xx
Joy

15 June 2016

13 June 2016

My First Vlog!

Hi Loves.
Time for a new experience. I have uploaded my first Vlog onto YouTube! Hope you like it and please let me know if you also have a YouTube account so we can connect.

Cheers!
x Joy

24 May 2016

CFS: Chronic Fatigue Syndrome

Hi Loves! I am still alive... Sorry for the very belated lapse between posts but I have been recovering from a bout of pneumonia on top of other things and while that would normally be remedied in a jiffy thanks to medicine and rest, due to my CFS it is taking much longer to recover although I am happily not coughing near as much as I was at the beginning. Progress. :)

Which brings me to my little "rant" about medical titles and people's assumptions, however well intended...

22 December 2014

Hello!: Update

Hello!
Man it has been over a month since I last posted on The Joyous Living. So much has been happening or not happening depending on how you look at it but I wanted to give a quick update because lets be honest I really miss blogging and my amazing blogging community.

For those of you who are keeping tabs on me, you'll know that I came down with a bad cold that developed into tonsillitis early/mid November. One thing led to another and suddenly I was literally on my back my mid November with the most excruciating pain I had experienced, an inability to read/focus on a computer screen or book (still not very good so please excuse any spelling errors as I type), and a fatigue that would not seem to lift. There were/are other problems I have faced with relation to this strange disease but those were the worst. I went back and forth from one GP to another in London and was diagnosed with Post Viral Fatigue/Chronic Fatigue Syndrome which I had never heard of before -- sounded like a made up disease to me. Seriously who calls in sick from uni or work saying they have 'post viral fatigue', I thought.
At A&E with the amazing Natasha (24 November 2014)
Long story short I had to file for mitigating circumstances at uni and praise the LORD that was accepted and my tutors/teachers have all been amazingly helpful and supportive. My friends in London were also true heroes - in particular big shout outs to Natasha, Olga and Mafe - and my mum flew out to London on Thanksgiving Day (!) and brought me home to California to recuperate. I really don't know what I would have done without all these wonderful people supporting me... I am so very grateful!
Floral Bouquet from Angela's Florist (Thanks Bridge Girls! xx)
I have been back in California for the past twenty days (how time flies!) and have been blessed to have my dear friends Laurie and Heather come to visit and lovely bouquets of flowers from Audrie and the ladies at the Bridge. I have also received some truly delicious homemade soups from the incredible Karin Wall and a treat bag and card from the lovely Negrey ladies that brought such smiles to my face. For the most part I have been laying low, taking pain medication and becoming best friends with my heating pad (O the wonders!).
Healthy Hair (Thanks LoriAnn Miller @ Texture Hair Salon)
I have seen two fabulous Conejo Valley doctors since returning home, GP Marc Judd and OMD and Acupuncturist Bruce Pendleberry. I cannot praise either doctor highly enough from their excellent way of putting the patient (me) at peace, giving 200% of themselves during consultation times (never once have I felt rushed or like my questions were not important) to their interest not to go firstly to the most costly option to the fact that I am actually feeling a wee bit normal for the third day in a row (!!) Thanks also to the lovely LoriAnn Miller at Texture Hair Salon in Thousand Oaks who cut my hair and gave me a little extra loving with some curls to help boost my spirit. I am a blessed girl surrounded by much love.

I am no were near where I should be health wise but I have felt a bit of normalcy with some energy and a smile on my face allowing me to carry out a few simple chores here and there and all with hope.

As I said, I am still not able to focus on the computer screen or reading -- it causes a burning sensation and other unpleasant symptoms - so my apologies if there are errors etc. in this post but I wanted to send a shout out to the world saying I am alive and hopeful.

It is nearly Christmas and I am hoping for continued improvements and that everyone has a healthy and love-filled season. God bless each and every one of us.

xx
Joy

p.s. I would be remiss if I did not make a mention of my travel experience. Unable to walk for any length of time and in terrible pain, I contacted American Airlines about wheelchair assistance. Reserving their service was easy as a snap and free and the service at Heathrow was incredible. Big shout outs to wheelchair handlers Danny Cruz and Lynette Young from AirServ at Heathrow. Once they had been called by the AA check in team, it was literally smooth sailing for me and my mum. Both handlers, Danny and Lynette, were beyond gracious and friendly and helpful and accommodating never making me feel bad for my inability to get around by foot and they even refused the tip my mum and I tried to offer them. I could not have been in better hands if I had personally selected the team myself. Service at LAX was also good - my wheelchair handler was a kind young man (who waited for the tip) - but the 20-30 minute wait for a wheelchair after deplaning and before border control was not fun in the least and I felt like someone in a cattle queue. I was just so happy to get home so big thanks to Danny and Lynette for their help!