Tag Archives: disability

Love/Hate/Interesting Update 3.27.17

I know it’s been ages since the last time I blogged about anything.  My personal life is going to get a lot crazier before it gets calmer.  Eventually I might write about some of the stuff going on when I feel like it’s the right time, but right now I need to deal with everything in private.  Thanks for your understanding!

Some days I have roughly the thinking capacity of a Marshmallow Peep, so I thought doing a Love/Hate update would be a good way to tiptoe back into blogging.  I’m also going to start adding an “Interesting” category to these updates for random tidbits that don’t fit into the “Love” or “Hate” categories.

Love:

-My service dog Vegas!  I just realized I haven’t written about him at all, so here’s the official announcement: I GOT MY SERVICE DOG!!!!  His name is Vegas and he’s a two-year-old English chocolate lab (so basically an American lab that looks like it shrunk in the dryer).  I’ll do a longer post about him complete with photos once I have the proverbial ducks somewhat superglued into a row.

-Chocolate. I’m female, it’s delicious.  Need I say more?

-Parks and Recreation.  There is no such thing as seeing this show too many times.  Leslie Knope would make an awesome president!

 

Hate:

-The horrifically large amount of bullshit that is out there, both on the internet and in general.  In the words of Scar from “Lion King”, I’m surrounded by idiots.  It’s getting old, to put it nicely.

 

Interesting:

So apparently eyes can get freckles!  I finally quit putting off going to the eye doc, where I learned that one of my eyes has a freckle.  I didn’t even know eyeball freckles were a thing, but apparently they are.  (Side note: Eyeballs look like Mars in photos. Just saying.)  The freckle doesn’t have any feeder vessels, so they know it’s not a tumor.  (I mention that because I totally heard “It doesn’t have any feet or vessels”! 😛 LOL)

Okay, that’s it for today!  If you have any questions about service dogs you’d like me to answer, leave them in the comments, and I’ll address them in a future blog post or vlog!

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How to Shower Safely With POTS

Showering is one of harder everyday tasks when you live with POTS.  Not only is it exhausting but it’s extremely dangerous because of the risk of falling and hitting your head.

Here’s my checklist for shower safety:

1.) shower stool

2.) Non-slip plastic mat that goes under the stool

3.) full water bottle in the shower to ease dizziness and other symptoms while showering

4.)  Baby monitors (the “baby” one stays in the bathroom and my husband uses the “parent” monitor.  This may sound, well, babyish, but I need to be able to get help if I feel like I might pass out.  Once I have the service dog, I hope to train him to bark on command, which the monitor will pick up.)

5.)  Manual chair or walker positioned right by the tub (a sturdy chair will work fine if you don’t use a wheelchair or walker.)

6.)  Safety handles in tub

All of these items are available on Amazon in various styles.

If you have a spouse or roommate, I recommend showering when they are home as much as possible, especially if you are newly diagnosed and struggling to get your symptoms under control.  You just don’t want to take any chances with shower safety since it can be such a hazardous situation.

I also recommend reducing your showering frequency as much as possible.  Most people do not need to shower every day, especially in colder weather.  Reducing showering frequency will reduce the risk of falls and it will also save you a ton of energy.  Speaking from experience on the latter!

 

 

BEDS Challenge Wrap-Up and a Big Announcement!

I decided to wrap up the BEDS challenge early.  Life has been super hectic, and the weather has been craptastic and wiping me out.  Plus, I got some Big News, and once I share it, you’ll understand why I need to save my energy.

Okay, here is the Big Announcement:  I am starting service dog training on the 5th!!!  I’m getting my dog from Can Do Canines.  If you need a service dog and are in this neck of the words, I highly highly recommend them.  They are beyond fantastic.  Unlike some organizations, they will customize the training for individuals’ needs.  If your needs change during the course of your dog’s life, they will work with you to add new tasks as much as they can.  When I first applied, my primary disability was chronic pain and fibromyalgia, so I wrote on the application that I needed a mobility dog.  When I was diagnosed with POTS, CDC changed the category from mobility to seizure alert. (I do not have epilepsy, but this is the skill category they use for people with POTS.)  This way I can still get help with some mobility things, but we will also be able to work with the dog on helping with POTS episodes.

I don’t know anything about my dog other than it’s a he.  I’ve been jokingly referring to him as Eddie, because that’s the dog on “Frasier” which is one of the best shows ever.  Yep, I’m weird!

I still want to blog as much as I can about the training process and life in general, but removing the pressure of blogging every day is helping me breathe a lot easier.  Thanks for your understanding, and I hope you all have a wonderful weekend!

BEDS Day 14: Unpredictability

My efforts to get caught up on BEDS posts hit a bit of a snag the past couple of days.  The weather went from sunny to blarg.  The change in barometric pressure can cause excruciating joint pain and mind-numbing fatigue.

My current flare-up is a good reminder of why I don’t have a conventional job or go to school or do anything that requires a solid commitment right now.  I am reliable, but my body isn’t.  That may change once I have my service dog and I get on supplemental oxygen, but I’m not there yet.  This is the body I have, and I am learning to love it and use it to the best of its abilities, but some days this is easier said than done.

I’ll be back with day 15 as soon as I can.  Take care!

BEDS Day 10: No Perfect Answers

I’m trying so hard to get caught up on posts while juggling my usual responsibilities of illness management, cat mom, domestic goddess duties, and who knows what all else.  I hate that my BEDS challenge has turned into a “three steps forward, two steps back” kind of thing.

Lately I’ve been feeling like any decision I make about my treatment options is going to be wrong.  I’m doing my best to throw that attitude down the toilet where it belongs, since there is really no such thing as perfect answers when it comes to treatment options and trying to figure my life out in general.  I guess that is one pieces of advice I’d give anyone who has recently been diagnosed with a chronic illness:  Make the best decisions you can at the time and try not to get hung up on results.  Try not to be afraid of changing your mind.  Everything is constantly in flux and you will rethink your current game plan countless times.

I hope this is at least mildly coherent!  Benadryl makes the whole “words putting into sentences doing” interesting!

Introducing the BEDS Challenge!

I have to be honest.  It’s been a rough summer.  I spent about half of it stuck inside from the extreme heat, and the pesky POTS diagnosis didn’t help either. I passed the time by watching tons of YouTube videos.  I always enjoy watching YouTube videos made by people in the chronic illness community.  (I can understand some American-accented videos without captions.)  There is this thing in the YouTube world called VEDA, which stands for Vlog Every Day In August.

I have my own channel and I would have loved to participate in VEDA.  But since there is no way I could film, edit, and caption videos every day, I came up with an alternative.  I present to you the BEDS Challenge!  (Blog Every Day In September).  I am in a huge mental and creative rut right now, and typing takes a lot less energy than producing videos, so I am going to do my best to blog every day in September.  I won’t be writing lengthy posts every day, but I will at least pop on here with a photo or a blurb about something random.  I really need to do this for myself.  I need something to focus on and work toward while I recover from this summer and wait not-so-patiently for Service Fido’s arrival.

My first BEDS post will be up on September 1st.  If you want to try the BEDS challenge along with me, then by all means do so!  Hope you’re all doing well!

POTS Diagnosis and Holes In The Health Care System

As I mentioned briefly in my last post, I was recently diagnosed with POTS.  POTS stands for Postural Orthostatic Tachycardia Syndrome.  It’s a form of dysautonomia, which is an umbrella term for diseases that affect the autonomic nervous system.  POTS is fairly common in people with fibromyalgia.  There is so much I want to say about all this but I’m exhausted and my brain is full of cotton balls at the moment, so this might end up being relatively short.

Out of all the fibro-induced diagnoses I’ve received in the past year and a half, POTS is definitely the most frustrating.  I have to constantly drink electrolyte solution and eat tons of salty snacks just to be able to move around a little bit each day.  Recently it’s been discovered that people with dysautonomia often have extremely low blood volume, and therefore patients could see improvement with partial or whole blood transfusions as well as supplemental oxygen.  (Because of the low blood volume, many people with dysautonomia don’t get adequate oxygen dispersed evenly throughout their whole body.  My limbs will actually turn blue and breathing gets extremely difficult if I don’t take my medication.)

The problem is the science is far ahead of the insurance companies at this point.  Most insurance companies aren’t willing to cover transfusions for people who have normal blood counts, or oxygen for people whose O2 levels aren’t dangerously low.  I’ve been asked if this is the doctors’ fault, and it’s not.  Doctors do not determine how much a treatment or medication costs.  Insurance companies make that decision.  I am beyond frustrated with the American health care system right now.  Medical care should cost a fraction of what people are currently paying.  People living in one of the richest countries in the world should not be going into debt for their medical care.

As for my personal POTS treatment plan, that’s a little up in the air right now, because of the insurance crap.  My daily POTS med is inexpensive and actually does something, so I will definitely keep taking it.  I’ll be seeing a cardiologist in August.  I also plan to see if Mayo Clinic is currently doing any research studies on medications or treatments, since it’s close enough that I could be there and back in a day if need be.  Research studies are free for participants and sometimes you even get a stipend.  At first I was extremely hesitant to talk about all this, but then I decided that if it helps even one person, it will be well worth it!

 

Long Overdue Update

Things have been rough on my end over the past several weeks.  I had the worse flare-up I’ve ever had since I’ve been diagnosed with fibro, and that made my mental health go down the toilet.  I used to kick myself whenever I shared anything that was less than positive, but then I decided that if sharing the truth will help even one person feel a little less alone in their own suffering, then it’s worth it.

The reason things got so bad was because the temperatures have been all over the place.  There was a 45-degree drop in temperature awhile ago, I don’t even remember when.  Up till that point, I was doing alright and seldom needed my narcotics.  I had managed to stretch out the bottle and it had lasted me over a year.  Then I ran out right before the 45-degree drop, which was so stressful on my body that I passed out and had non-epileptic seizures from the pain several times.  I finally got a new prescription and the drug bust commenced.  (As in, busting open the bottle and popping the much-needed drugs!)

I was extremely hesitant to share this with anyone, partly because of the stigma against narcotics and also partly because I am still recovering from being in a church community where some people were extremely opposed to all forms of western medicine.  When I have a flare-up, I still wrack my brain trying to figure out what I could have possibly done to bring it on, which does wonders for my mental health as you might imagine.  I’m learning the hard way that that kind of mental and spiritual damage does not go away overnight.

As for happier news, some of you may already know that I had been in the process of applying for a mobility service dog since last fall.  Well, I finally got it finished and my application has been accepted!  The next step is a home interview with a trainer in the next couple months.  I will share more about all this when there is more to share!

Okay, the brain fog is kicking my butt so I’m going to stop here.  Hope you’re all doing well!

Some Uncomfortable Realities of Life With Chronic Illness

I’m not going to lie:  I just had a really tough week.  I mean a Really. Tough. Week.  I’m not referring to lovely TMI symptoms, although there were some of those too.  I’m talking about the nitty-gritty, cold hard realities.  At first I was hesitant about sharing all this.  After all, there’s a reason no one tell you these things:  they’re uncomfortable.  But ignorance is where misconceptions start, so I’m taking the plunge and sharing the more uncomfortable realities of life with an illness that isn’t going anywhere.  Here goes!

1.)  My illness puts me on house arrest more often than I care to admit, especially in the dead of winter.  I just went five days without leaving my apartment.  My record is 18 days.  It’s not a matter of “just getting out more”, so if that is what you were going to say to me, kindly shut your cookie hole.  Sometimes I literally just can’t get out.  A mobility service dog will increase my chance of being able to get out, but until or less I am accepted for one, this is the reality.

2.)  In addition to being painful and miserable, chronic illness is as boring as hell.  This week I actually bawled like a baby, not because I was depressed, but because I was so blooming BORED!

3.)  On days I can’t work, socialize, or read, I will blow out brain cells watching TV because that is far better than letting soul-killing depression sink in.

4.)  Depression and suicidal thoughts are extremely  common in people who life with chronic illness.  Honestly, if I live alone, I’d probably be dead by now.

5.)  Rude comments are heartbreaking.

6.)  Sometimes shaving is a non-event.  This isn’t about making feminist statements.  It’s about making the statement that I am too exhausted and hurt to shave.  (Yes, hurty is a word.  Deal with it! :p)

7.)  On the really bad days, the “invisible illness” concept feels like a myth.  I don’t understand how people don’t see it.

 

Things I Wish People Understood About Chronic Illness

1.)  Chronic illness does not take the weekends or holidays off.  I have had to spend Easter and New Year’s Eve in bed more than once.  It sucks but there is nothing I can do about it.  Please don’t make me feel any worse about this than I already do.

2.)  I’m not unreliable.  My health is.

3.)  Just because I may not use my crutches or wheelchair on a given day does not make me all better.

4.)  I get the best results when I combine traditional and alternative medicine.  It’s very annoying when people tell me that one is better than the other.  There are pros and cons to every treatment.  When dealing with complex illnesses, you have to pull out all the stops and use everything you’ve got.

5.)  I’m sick to death of unsolicited medical advice.  Please don’t go there.

6.)  It’s possible to be allergic to natural treatments.  Some natural treatments can also make symptoms worse for some people.  I am allergic to calendula (an ingredient commonly found in natural eczema creams), and ginger essential oil makes my nausea worse.  This does not mean I am refusing to use all natural remedies.  This means I know my body.

7.)  I know more about my conditions than some doctors.  That is not half as frustrating as when they pretend they know when they don’t.  If it’s not their specialty, it’s understandable that I know more than they do.  I wish they’d admit they don’t know what they’re doing and send me to somebody who does.

8.)  Losing fantastic doctors to moving and insurance changes can be very stressful and devastating.

9.)  Having multiple chronic illnesses is more common than most people realize.

10.)  Taking medication with significant side effects does not mean I am being cavalier about what I put in my body.  It means that I have carefully decided that the side effects are nothing compared to the disease itself.

11.)  There are times when I have to clear my social calendar and focus on taking care of myself for days of even weeks at a time.  Complaining about this will not change it.  I promise i hate this more than anyone else does.

12.)  Treatment is rarely one-size-fits-all.

13.)  Getting an accurate diagnosis can take months or years for some people.  I started having symptoms of endometriosis in 2006 and was not diagnosed until 2009.  Thankfully my fibromyalgia and IBS were diagnosed almost immediately, but not everyone is that lucky.  I’m having joint pain and dislocations of unknown origin, and I have no idea how long it will take to get that diagnosed.

14.)  My definition of an “improved quality of life” is not the same as a healthy person’s.  To a healthy person, it means being able to do as much as you want.  To me it means being able to do some of what I want, and getting to a place where I am content with that.  I don’t do physical therapy with the intent of someday running a marathon.  I do it with the intent of hopefully someday having a bit less pain and fatigue when I walk and do everyday tasks.  It’s not pessimism; it’s realism.  I’m a human being, not Superman.

How about you?  What do you wish people understood about live with chronic illness?