Tag Archives: ranting

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!

 

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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!

 

 

 

 

Sick Of Fibro!

Sorry I haven’t written in awhile. Honestly, I haven’t really wanted to because the things I absolutely have to do have been overwhelming. I have to get ready to move in six weeks. I have to catch up on all the routine appointments that I skipped during my Lupron stint because no way did I have energy for it back then. I don’t really have enough energy for it now, but I can’t put it off anymore. and of course there is the daily chronic illness maintenance. So writing wasn’t at the forefront of my mind for most of the summer.  
The other issue is that, when my fibro is really flaring up, Writing can be extremely difficult. My new ipad is a lot easier on my hands, and of course I can always use Siri. But putting words and sentences together can be really difficult when I’m having brain fog. How anyone can work with fibro is beyond me. I can barely get my brain to tell my hand to turn a flippin’ doorknob. Lately I’ve been pretty envious of anyone with fibro who can still pass as normal. I want to demand to know how they do it, because having a head full of cotton balls and limbs made of lead impaled with broken glass is getting old fast.
I’ll write again when i can, but I can’t make any promises about how soon that’ll be.

Love/Hate Update 7/3/2015

This is going to be super quick because I feel like crap on a crayfish, to quote “Parks and Recreation.”

Love:

-“Parks and Recreation”, speaking of which.  I just got the schedule of events for my town’s Raspberry Days festival, and now I can’t look at it without thinking about the show and laughing hysterically.

-Lara bars.  Seriously, those things are saving my life right now.  No gluten or soy, but plenty of bonkers awesome deliciousness complete with a great carb/protein balance!

-teddy bears.  Don’t judge me.

Hate:

-the fact that my insurance company thinks 12 tabs of Zofran (anti-nausea drug) a month is sufficient.  Methinks that decision should be made by professionals, as in people who actually use the stuff and know how many tabs people actually need.

-today.  Seriously, today needs to die.  I woke up feeling absolutely miserable and nothing I’m doing is helping.  I think my body morphed into an angry toddler when I wasn’t looking.

-the fact that this is the second holiday I’ve been sick for this year.  I spent this past Easter at home on my bed glued to my aromatherapy diffuser and jump-starting my lungs with the Ventolin every few hours like clockwork because my lungs didn’t feel like being lungs.  Tomorrow is Independence Day which I’ve really enjoyed the past few years (more for the family/framily togetherness than patriotism).  But since every part of my body and all their grandmothers decided to cop an attitude,  I’ll probably be spending most of the weekend with Netflix.

-fireworks.  Every year I have to ditch the hearing aids for a few days over the 4th because of all the legalized stupidity, a.k.a fireworks.  I really don’t appreciate this.  The Lupron shots made my existing hearing loss and crappy speech perception even worse, so going without my aids for a few days is just great.

-the fact that I am exactly 28 days away from seeing the fibro specialist, yet I feel bonkers horrible today.

Okay, you’re probably sick of all my complaining.  Have a safe and fun holiday weekend!

Why We Need to Scrap the Word “Millenial”

I am getting pretty sick and tired of everyone using the word “millenial”, as if people in their 20’s and 30’s are different from people who were that age 20 or 30 years ago. I am getting really sick of people telling me that being a millenial means I have certain needs that people who were my age 30 years ago did not have. That is complete and utter BS. How would my needs be any different if I was a 27-year-old living in 1985? I would still need healthy relationships and a sense of purpose. If by “different needs” you mean that social media culture makes it a lot more difficult to meet our innate relational needs, then say that. It’s the sociological climate that’s different, not our needs. I would argue that this “millenial culture” phenomenon is what perpetuates all the selfishness and entitlement in my age bracket that makes the older generations look on all of us with disdain.

Referring to people as “millenials” encourages prejudice. Any time you lump a group of people together, it’s bad news. Prejudice as letting fear or ignorance dictate our responses to things we don’t understand. By using one word to describe an entire sect of the American population, we are doing just that.

The Stigma Against Physical Illness and Traditional Medicine

As I’ve mentioned before, health and I have been having a bumpy ride the past several months. My endometriosis came out of remission last year. Along with that came free gifts of fibromyalgia, irritable bowel syndrome, and asthma.

Last fall, I made the difficult decision to do a 6-month stint of Lupron injections, and then I saw firsthand just how stigmatized physical illness and traditional medicine have become. In the age of natural remedies and anti-doctor sentiment, people who choose traditional treatments are harshly judged and verbally attacked. The rheumatologist who diagnosed my fibro gave me an earful about how I never should have finished the Lupron course, and why did I even left them inject me in the first place? (Dr. F, if you’re reading this and wonder why you’re not my doc anymore, your lovely attitude may have something to do with it! Just saying!)

It’s one thing to have legitimate concern about side effects. Lupron came with plenty of them, and that was part of the reason I put off going on the shots as long as I did. But berating people for making informed decisions about a condition you don’t know crap about is WRONG. If you haven’t felt like you’ve been socked in the stomach or like you’ve been impaled with shards of broken glass, then you have no business telling someone they shouldn’t see a specialist or use narcotic painkillers as needed. (Yes, there are appropriate ways to use narcotic painkillers, and most people don’t lose the judgy pants long enough to find that out either.) If you haven’t been dependent on inhalers to jumpstart your lungs when they’re threatening to take a vacation, you have no business telling someone they shouldn’t put steroids in their body. Yes, that comes with a certain degree of risk, but letting asthma go untreated is much riskier. People don’t understand that choosing health treatments, whether traditional or alternative, is taking a calculated risk. You take a calculated risk every time you get in your car and drive somewhere. You could die in a car crash. That doesn’t erase the benefit to be gained from driving to work or to a social event or wherever.

It isn’t just traditional medicine that’s stigmatized. Illness itself is stigmatized as well. People often say that mental illness is no more shameful than physical illness, but honestly, I get more flak about my physical health issues than my mental health issues. Statements like, “You’re too young to be that sick” or “You must have done something stupid” or “G-d hates you” are signs that our society is not as understanding about physical illness as we’d like to think. The natural remedy fad is partly to blame for this problem, in my humble opinion.

I’m all for natural remedies that are safe and effective. I have a handful of natural remedies that can sometimes reduce or eliminate my need for heavier pain medication. But sometimes the natural stuff just doesn’t cut it, and it’s not always safe. Carbon monoxide is natural. It’s also deadly. It’s also possible to be severely allergic to natural ingredients. For instance, California Baby is a popular organic lotion brand. I have nothing against them, but I can’t use their stuff because it contains a plant called calendula, which is an effective eczema remedy for some people. Well, it turns out I am highly allergic to calendula, which I learned the hard way. So that natural remedy is out of the question for me, and people have had the gall to tell me I’m just being stubborn and I should try the calendula again. (I’m as stubborn as all get-out, no point in denying it, but I most certainly should not try the calendula again. I’m a fan of breathing and not breaking out in hives, thank you very much.)

So what do I want people to take away from all this? I guess I want people to listen more and talk less when it comes to other people’s health issues. (That’s the nice way of saying you all need to shut the frack up.)

String Cheese Rant

Right now I’m going dairy-free because my intestines have decided that if it comes out of something that says moo, they don’t like it.  (Digestive issues are pretty common with endometriosis, unfortunately.)I guess you could say my intestines are anti-bovine.  I was doing okay with this no-dairy business until I realized something absolutely, completely, totally, utterly horrific.

String cheese is dairy.

As in, it has moo-juice in it.

As in, I. Can’t. Have. It.

My intestines are all, “No string cheese for you!” like that annoying soup Nazi on “Seinfeld.”

This wouldn’t be a problem if I hated string cheese.  But the way I feel about string cheese is the complete opposite of hate.  I’m craving string cheese.  When I say I’m craving string cheese, I mean I want string cheese like Gandhi wanted peace.

Sometimes I write about more profound things.  And sometimes I just really want string cheese. :p

Struggles and the Shattered Myth of Fairness

When I was about eight, my mom took me to see some specialist at some big-shot hospital. (I can’t for the life of me remember what was wrong.) While I was at that hospital, I saw a little boy about my age, but he didn’t look like any of the boys in my class. He didn’t have any hair, and he was sitting in a wheelchair hooked up to a bunch of IV’s. I asked my mom what was wrong with him, and she pulled me aside and told me he had cancer. Up to that point, I thought only old people got cancer. I asked my mom if that little boy was going to die. She didn’t say “no, he’ll be fine.” She said, “Yeah, he might.”

I cried my eyes out on the way home from the hospital. I wasn’t crying because some nurse had just taken a dozen tubes of my blood. I was crying because I had just learned an excruciating life lesson: life is not fair and sometimes shitastic things happen.

I’m going to be honest: life is not being fair to me right now. I have an autoimmune disease called endometriosis, which came out of remission last year. Autoimmune means the disease is not a virus or bacteria. It’s my own cells going wackaloony, like a malfunctioning smoke alarm that won’t shut up even though there’s no fire. When you have a disease that’s made of you, things get complicated in terms of trying to find effective treatments.

My endo is not going away quietly, to say the least. I won’t go into all the details about my symptoms and treatments on here, but I’m tired of hiding my emotions about the whole thing. This has been freakin’ difficult because there is no solid explanation of why shit happens. I don’t know why some people die young, and some people get diseases that don’t kill them but make their lives a living hell. I don’t know why natural remedies aren’t the cure-all that some people claim they are.

Pretty much the only thing I do know with certainty is I didn’t get sick because I’m a failure any more than that boy in the hospital 20ish years ago. I’m not an extraordinarily good or bad person. I’m just a plain old person, and sometimes crap happens to us plain old people and we don’t know why.

I’ve been thinking a lot about Mary lately. (I’m not Catholic, but there is a lot about Catholicism that I appreciate.) If anyone understood the pain of unfairness, she did. Watching your 33-year-old son being brutally slaughtered by an angry mob is about as unfair as it gets. I don’t even care that thinking about Mary is on the Unofficial List Of Things Good Protestants Don’t Do, because this is keeping me afloat right now.