Tag Archives: Chronic illness

29 Random Things About Me

Hi everyone, sorry for the accidental blogging hiatus.  I am dealing with a ton of stuff in my personal life and really needed a break from Internetland.  But now I’m back and hoping to resume blogging on a semi-regular basis!

Since I just turned 29, I decided to share 29 random things about myself.  Here goes!

1.)  My favorite actors are Jim Parsons (Sheldon on Big Bang Theory), Robin Williams, and Mayim Bialik.  Mayim Bialik is also one of my all-time favorite humans in general 🙂

2.) I love pickles

3.)  My favorite TV shows are Parks and Recreation, Cristela, Frasier, and Big Bang Theory, to name a few

4.)  My favorite singer is, hands down, Josh Groban.  His music has gotten me through some really tough stuff!

5.)  My biggest pet peeve is those little cards that fall out of magazines.  They come in my subscription copies asking me to subscribe!  Seriously?!  What is up with that?!

6.)  I love old-timey things

7.)  I speak American Sign Language as my second language.  I’m also learning Spanish and religious Hebrew (for reading Jewish prayer books and understanding Hebrew liturgy in synagogue services).  I hope to learn conversational Hebrew eventually.

8.)  I love all things Jane Austen

9.)  I’ve gone sea kayaking off the coast of Alaska

10.)  I’ve been to Wisconsin, Iowa, Illinois, Florida, Washington DC, Washington State, California, Nevada, New Mexico, and Alaska.

11.)  I’ve petted dolphins

12.)  I’ve been to Disney World twice

13.)  I reread “Little Women” at least once a year, usually in January when I’m trying to get back in the swing of normal life after the holidays.  It’s comforting for some reason.

14.)  When I was a kid, some of my favorite shows were Arthur, Mister Rogers, Magic School Bus, and Lamb Chop’s Play Along.  When I got older, like late elementary school, I got hooked on Home Improvement.

15.)  I started making YouTube videos a couple of years ago and I really want to film more often!

16.)  I loved making jewelry as a kid, and I’m trying to get back into it.

17.)  I love music.  I play piano, and I’m trying to get back into cello and guitar.  I played flute for years, but unfortunately I have to take a break from woodwinds because my O2 level is too low to play safely and comfortably.  Hopefully that’ll change now that I use supplemental O2 part-time!

18.)  I’m in the process of converting to Reform Judaism.  I’ll write another post on this soonish!

19.)  If I ever get to the point of being able to have a “normal” job, I’d want to work at a nonprofit I’m passionate about.

20.)  I live with mild autism, asthma, Ehlers-Danlos Syndrome Type 3, fibromyalgia, endometriosis, irritable bowel syndrome, and POTS (postural orthostatic tachycardia syndrome.)  The EDS is likely the root cause of most of my other conditions.

21.)  I also live with PTSD, depression, anxiety, and obsessive compulsive disorder.  (The checking door locks and stove dial type, not the handwashing type.)  The mental illness stigma pisses me off to no end.

22.)  Some of my favorite foods are tacos, pizza, pasta, and ice cream.

23.)  When I was in kindergarten, I wanted to be a police officer when I grew up, because I wanted to gointo schools and talk to kids like they did.

24.)  I love love LOVE dried mango

25.)  I watch “You’ve Got Mail” when I can’t sleep

26.)  Sometimes I really want to do more traveling

27.)  I love the ocean and sometimes I wish I lived on the coast

28.)  I was diagnosed with non-celiac gluten intolerance 2 years ago

29.)  I started reading in preschool

Thanks for reading!  Hope you all have a great weekend! 🙂

 

 

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 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!

BEDS Day 7: An adult-sized child

I decided to make a list of things that solve any problem and just generally make me feel a little less craptastic when life is hell-bent on giving me the middle finger.  I realized that I’m basically an adult-sized child, haha!

Here’s my list:

1.) Disney movies

2.)  Legos.  Don’t judge me :p

3.) Coloring.  I repeat my statement about not judging :p

4.) Stuffed animals

5.) Cats

6.) Snuggly blankets

7.) Ice cream

8.) Chocolate

9.) chocolate ice cream

10.) Plaintain chips.  I thought they would be gross since they are such a hippie food but they are amazing.  Plus, now that I have POTS there is no such thing as too much salt, so it works!

11.)  The Golden Girls.  I thought it would be absolutely not my kind of show, but I love it more than I care to admit.  I also think like Dorothy more than I care to admit :p

I’ll be back with day 8 as soon as I can!  (Still catching up on posts and life in general after my body gave me the business end of a hissyfit.)

 

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!

 

Still Alive and Kicking!

Hey everyone, I wanted to let you know that I’m still alive and kicking! (Literally, seeing as I have Restless Leg Syndrome! :p)

It’s been a rough couple of weeks on my end.  My neck of the woods is at the tail end of a 14+ day heat wave, on top of receiving a diagnosis of POTS. (Postural Orthostatic Tachycardia Syndrome.)  My POTS diagnosis really needs a post unto itself, but I probably won’t get around to that quite away.  Once the heat wave ends, I really need to catch up on all the cleaning and organizing that I was going to do right before my body and the weather decided I needed to be allergic to gravity on top of everything else!

I was going to hold off on writing any more posts until I was up for writing about my POTS diagnosis in more detail.  But I realized that I really miss blogging.  Then I realized that every time I think about blogging, I think about that line from the movie “Julie and Julia” where Julie says, “I could do a blog!  I have thoughts!”

Here are some of my thoughts at the moment:

1.) I love purple pens

2.) I wish I could wear deep purple without looking dead.

3) Spirituality can be complicated.  Bloomin’ complicated.  Effing complicated.  Blooming effing complicated!  Anyone who says they have all their spiritual crap together has probably been smoking something.

4.) I just watched a documentary about Legos.  Yes, you read that right.  Said documentary is awesome and you need to see it.  And we all need to build with Legos.

5.)  Legos are cathartic and health insurance should cover all the Legos I want.

6.)  There is a major dried mango disappearance epidemic in my house.  I suspect foul play.  If my previous cat was still alive I would accuse her in a heartbeat.  She was beyond diabolical and could have totally gotten in the cupboards if she wanted to.  Okay, so maybe it’s more of a dried mango addiction than a disappearance problem.  But dried mango is a much better addiction than some.  (If someone made me go to Mangoholics Anonymous, I would totally eat dried mango slices during the meetings.  Just saying.)

Okay, I’m getting major brain fog and have the concentration of lime Jell-o, so I’m going to call it a blog post and keep daydreaming about all the Legos I want.  Hope everyone is doing well and staying cool!

 

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!

Love/Hate Update 4/4/2016

Hi everyone!  Sorry it’s been forever since my last post.  The past few weeks have been a mess of pain flares and stomach bugs and mental health junk, and I think I want to live in a giant bubble to ward off misfortune.  But I digress.  I finally feel like blogging again, so here’s a love/hate update!

Love:

-coffee

-Praying in Color.  It’s helping me feel a little bit less awkward about where I am spiritually.  Check out Praying In Color by Sybil Macbeth.  You won’t be sorry!

-Stress Away Essential Oil from Young Living.  It’s like a tropical vacation in a bottle.  Click here to purchase!

-Parks and Recreation.  This show solves any problem.

 

Hate:

-feeling like something is wrong with me because I don’t have the energy to be the person I was before I got sick.  I feel like people who knew me before then don’t recognize me anymore.  I also feel like this is all my fault somehow.

-All the planning and research I have to do in order to eat out safely at new restaurants.  Half the menu from the local Chinese place is out due to gluten, shellfish, or cross-contamination from shellfish.  I have talked to managers on more than one occasion, not to complain but to make sure my food is safe.  I hate having to do that, but the reality is that my shellfish allergy has gotten worse over time.  It’s much better to be safe than sorry.  Wearing an alert bracelet helps me feel like it’s more “legit” but sometimes I just want to go out to eat without having to be hyper-vigilant!

-when people who are not gluten-intolerant request gluten-free food at restaurants.  These people have no respect for the extra care and prep work that goes into making gluten-free food.  When I order something that is GF and ask them to put an allergy alert card on my plate, I thank them from the bottom of my heart.  People who aren’t gluten intolerant should count their lucky stars.  It’s a medical necessity, not a lifestyle choice.

I guess that’s it for now.  Hope you’re all doing well!