Wednesday, February 10, 2016

8 things other people have taught me about my chronic illness

Having an illness makes you vulnerable to all kinds of comments. I've collected the top 8 things that other people have taught me about my chronic illness.

1. It inconveniences them
2. I should try harder
3. If I had just used essential oils, I wouldn't have this problem
4. A positive attitude fixes everything
5. My disease is made up
6. I should just exercise more
7. People who are sick just didn't take care of themselves
8. God is punishing me

Did I miss anything?

Obviously these things are less than helpful, and yet I have learned from each of them. Every snide comment made or magic cure pedaled has taught me an important lesson, even if it wasn't what the person intended.

1. Inconveniencing other people is part of illness and it's not my fault.
2. Trying harder isn't always going to make things better, especially when it comes to my health.
3. There are a lot of "magic cures" out there that are anything but magic.
4. Sometimes it's okay to be sad.
5. Medical science is very complicated and there are so many things we don't know yet about the human body.
6. I should only exercise as much as my body will allow otherwise I will just cause further injury to myself.
7. There is no use in thinking of the "what ifs," because it won't make me healthier. I need to focus on the future and what I can control.
8. Good things happen to bad people and bad things happen to good people. Having health problems is not a punishment, it is just a circumstance of life.

I do wish people would mind their own business and not judge me or my health. However, I'm grateful for the many lessons I've learned through their sometimes harsh treatment of me. I have learned to be a more thoughtful and compassionate person, and I like the person I have become. I would rather be compassionate and sick then judgmental and healthy.

Monday, February 8, 2016

Running to the edge of your strength


My dad asks me every time I see him, "how are you feeling?" Every time my answer is the same: I am tired, overrun, exhausted, hurting, and generally miserable. That answer has never changed since I got sick. But the other day he asked me to think about what I was able to do this year versus what I was able to do last year. I listed off all the things I had done that week and then I realized that I can do so much more then last year at the same time. I still have so many limitations I never realized that I have less limitations. So why do I still feel horrible all the time? Because I run to the end of my strength.

I've always been a person who likes so keep busy. One of the most frustrating things about chronic illness has been that I was forced to slow down and I get easily bored. So when I'm feeling "well" all I want to do is go go go. I've gotten better over the last couple of years about managing my bursts of energy and not running myself into the ground, but it's a constant battle. At my sickest moment all I was doing was taking care of my kids and keeping up with my blog and I was doing a minimal job at that. Now I volunteer for the Texas Lyme Disease Association, I ferry my kids around to their after school activities, I have my kid's friends over, a volunteer at my kid's school, I cook dinner from scratch at least four days a week, I teach Sunday school, I spend time with friends, I have friends over to my house, I exercise, and I've been working on stepping up my blogging game by self hosting. Yes, I feel absolutely awful the majority of the time, but clearly I am doing a lot better then I was. I've just been too busy to see it. I go and go and then I get frustrated when my body prevents me from doing all the things I want to do, all while not noticing that my body is letting me do much more than I used to.  I just keep running to the end of my strength.

I think a lot of us sickies do this even when we try not to. We know we need to manage things and we need to pace ourselves, but there are so many demands made on us that we feel we have to keep up with. I constantly feel like I'm failing people because I am not meeting their expectations. Even though I know that I need to put myself first and not fall to the pressure other people put on me, I hate being a disappointment and I hate when people think badly of me. Intrinsically I am a people pleaser and chronic illness by its very nature does not allow much room for people pleasing. So when I feel well I think I have to make up for all the time I've lost and all the people I feel I have let down.

There is no magical answer to this problem. All of us are going to let someone down sometime and when you have a chronic illness its even more likely to happen. I'm trying to teach myself not to care, but it just isn't that easy. The truth is all probably always run to the end of my strength because that is the nature of my personality, and my nature didn't change just because I have a chronic illness.

Saturday, February 6, 2016

Is fibromyalgia fake? 5 fibro myths debunked



You may have been led here to this page because you googled "Is fibromyalgia fake" looking to confirm that someone in your life is a lazy hypochondriac. Well unfortunately for you ( but fortunate for them) fibromyalgia is real. Now don't get me wrong, fibromyalgia is way way WAY over diagnosed which is unfortunate for those who really have it. Many people who have chronic pain issues end up getting thrown a fibro diagnosis because their doctor is too lazy to figure out what is really wrong. At the end of the day though, you're here because you are someone else in your life is experiencing pain and illness and fibromyalgia is a real diagnosis. So with that said, please read through all the links I have provided below debunking fibromyalgia myths.

1. All fibromyalgia patients are high on painkillers making them druggies of the worst sort. These drugs are just handed out by doctors like candy.

I have a lot to say about pain medication, just check my sidebar in the "pain" and "medicine," but I think quoting the experts might be the best option in this case. Below are just a couple articles about pain medication and how it's a lot harder to get than most people think. Patients with chronic pain often are under treated because of the ridiculous bureaucracy they have to deal with just to get treatment. For example, read this post over at "Oh my aches and pains" to discover what it is really like trying to get pain medicine.

Look at this transcript from NPR addressing how chronic pain is actually under treated and the difference between addiction and dependence. "Addiction is defined as a neurobiological condition where people use the drugs compulsively. They use them despite knowing they're doing harm. Physical dependence is different. If you go on opiods for even two or three weeks, you will become physically dependent. That's 100 percent guaranteed, but that's not the same as addiction. That is a state of adaptation that your body makes to the opioids. "

Please check this study where fibromyalgia has been linked to decreased brain activity. "The results showed that the fibromyalgia participants had significantly increased pain sensitivity compared with the control group."

Also please read this post about how women are regularly under treated for pain as compared to men (and women tend to have fibromyalgia in much greater numbers than men).

And finally, read here about the high suicide risk for people with chronic pain. Sounds like a picnic huh?

2. Fibromyalgia always results from some past trauma, be it physical or mental.

This can sometimes be true, but it is not always the case. Please see this information provided by the Mayo Clinic. Last I checked they were pretty reputable. "There's a lot that's unknown about fibromyalgia, but researchers have learned more about it in just the past few years. In people who have fibromyalgia, the brain and spinal cord process pain signals differently. As a result, they react more strongly to touch and pressure, with a heightened sensitivity to pain. It is a real physiological and neurochemical problem."

And that is just from one source. So no, just because you have fibromyalgia it doesn't mean you were abused as a child or were in 10 car accidents before the age of five. Fibromyalgia is complicated and we're still learning new things about it and Fibro patients do not fit in a narrow easily definable category.

3. It's easy to get disability benefits from fibromyalgia.

Read a first person account of how difficult and demeaning the disability process is here. Many patients have to wait years in order to get disability. They get turned down two or three times and in the meantime they are unable to work and are living on nothing. Even if they win eventually, they aren't generally living high on the disability hog. Sounds like a great arrangement to me!

Look at this article about how disability testing for fibromyalgia is often misleading and leads to inaccurate results and denial of benefits.

Read here about all the things that fibro patients have to take into account and figure out when they can no longer work.

4. Fibromyalgia sufferers are all type A personalities who wouldn't be sick if they weren't so controlling and OCD. 

Read The Brainless Blogger's response to that idea here she does a great job addressing the issue. I'll also add that I have never been nor will I ever be a Type A person. I'm a quintessential middle child who has always been easy going and laid back, and I'm not the only fibromite is who that way. This is a gross over generalization of fibro patients.

5. Fibromyalgia is another word for lazy

Read my post here about how awesome it is to have fibromyalgia. Despite what most people think it's actually not fun to be in pain all the time. It's also not fun to be forced into resting a lot resulting in you missing out on all the fun that other people are having. I don't know about you but I absolutely love staying home while everyone else gets to go out and do things! I love that every time I walk for any period of time I end up in horrible pain! It is so freakin fun, you should try it too! And if my sarcasm wasn't enough for you, check on an article here which includes a lot of information and medical links about fibromyalgia.


I believe you


Recently an acquaintance of mine who has suffered for years from unexplained illness was finally diagnosed.  It's hard to explain to someone who has never suffered from an unexplained illness, but the diagnosis was actually a happy occasion and yet he chose to keep silent. He did not tell most of his other acquaintances or people he interacts with a regular basis, he only chose to tell close friends.

When I heard that this person chose not to broadcast the news I thought it was a little odd, but after some thought I came to understand. When you have an unexplained illness you will be told you are crazy more times then you can count.

Your doctors will call you crazy
The nurses will whisper about you as you walk out of the doctors office
Your pharmacist will challenge the validity of your prescriptions
The news will mock people like you
Your acquaintances will think you're nuts
You will lose friends who think you're just trying to get attention
Even your loved ones will question you and think you're just being lazy

The longer this goes on the more you start to believe that just maybe you are crazy. You begin to doubt even yourself. Maybe there is something wrong with you? Maybe you are mentally imbalanced and you just don't know it? Everyone you know is convinced that you are certifiable, so maybe you actually are?

And then after years of losing friends and loved ones and thinking that you might actually deserve to be called all the things they are calling you, it turns out you aren't crazy. You have a diagnosis, so now what to you do? Do you wave your diagnosis in the air showing to all the world that they are imbeciles? Do you wait for the long line of apologetic acquaintances to make their way back into your good graces? Or do you hold tight to the people who stuck by you no matter what and believed you through thick and thin? There are no easy answers, but I chose to hold tight to the people who believed from the very beginning.

The worst thing you can do to someone with chronic illness is make them prove to you that they are sick. For me the most important people in my life are those who have believed me from the beginning. Those who know me and who I am and have stuck by me in thick and thin. The most significant, powerful, essential words I have ever heard were and are, "I believe you."


Wednesday, February 3, 2016

Why you should be more worried about Lyme Disease than Zika virus



The world is currently caught up in a panic about Zika virus. We're all probably correct to be concerned about its effects because it's a serious disease, but why are we all up in a panic about a virus coming from other parts of the world when we already have a serious disease that is evident in epic proportions?

"The Centers for Disease Control and Prevention estimate that 300,000 people are diagnosed with Lyme disease in the US every year. That’s 1.5 times the number of women diagnosed with breast cancer, and six times the number of people diagnosed with HIV/AIDS each year in the US. However, because diagnosing Lyme can be difficult, many people who actually have Lyme may be misdiagnosed with other conditions. Many experts believe the true number of cases is much higher." (lymedisease.org)

The CDC currently reports about 30,000 new cases of Lyme Disease per year. They themselves admit this number is incorrect and predict that the number is closer to 300,000, and that number is continuously growing. However, it's fairly likely considering the CDC's continual denial of Lyme that the number is even higher. For example, the CDC barely even acknowledges that Lyme can be found in Texas and yet Texas A&M researchers  found infection with B. burgdorferi in 45% of the
collected I. scapularis ticks. This is in Texas, a state where there is one doctor that treats Lyme Disease. That's one doctor in the whole entire state of Texas, population 26.96 million people.

The Lyme mess gets even better. The CDC has stipulated that only certain bands in the Western Blot test have to be positive in order for a Lyme test to be positive. The problem is that the specific bands for Lyme disease (which are bands 31 and 34), were excluded from the CDC criteria because they were used to create the Lyme disease vaccine, a vaccine that is not even available anymore. Additionally, the CDC testing criteria  includes some bands which are not specific to Lyme disease, which increases the chances of a false-negative on the test. And yet they have managed to convince doctors that if someone tests positive it must be a false negative and if they test negative it's because they don't have it. How do I know this is a wide spread problem? Because I get emails from people every single day in which this exact thing happened. And these are only the people that figured out it happened and decided to look for more resources. How many people are out there who don't know their doctor lied to them about their Lyme test?

It gets even better. If not treated early and correctly,  Lyme produces chronic disease that causes widespread pain, fatigue, heart and circulation problems, and neurological problems such as impaired memory and concentration.  It destroys the entire body when not treated quickly, and yet Lyme patients see on average thirty doctors before they are diagnosed.  Additionally an LDo published survey found Lyme had a worse quality of life than many other illnesses. Lyme patients had a lower worse mental health, and greater out of pocket medical expenses. Lyme Disease patients were found to have a worse quality of life then people with cancer. So it's a really great disease to have.

It gets even better. Lyme Disease is not covered by insurance beyond one month of antibiotics (if you can even get that). In my own experience it took me TWO MONTHS to wrangle my insurance company to agree to pay for one month of IV antibiotics. This was even after I was lucky enough to have a CDC positive test. This was after I had been sick for years, and it took me months of arguing with them and getting shoved around to get that one month covered. In that one month I significantly improved, but it didn't matter because I couldn't get them to pay for any more and in the end I relapsed.  Why isn't Lyme Disease covered by insurance? Because it's a political disease. I can't even put a dent in the explanation of the convoluted special interests, money, and politics that have conspired together to hurt sick people. I suggest you watch the documentary "Under our skin" to get a better picture. It will nauseate you.

It gets even better. Lyme Disease and Syphilis belong to the same group of bacteria, called spirochetes. It has been found that Syphilis and Lyme Disease can penetrate our bodies much better than almost any other organisms. Spirochetes can cross impenetrable barriers. Syphilis and Lyme Disease bacteria can cross the blood-brain barrier to infect the central nervous symptom, unlike most other organisms. It is well known that Syphilis can also invade the placenta and infect an unborn child. And yet the idea the Lyme Disease can infect an unborn child is considered highly controversial. Scientists believe it does, and yet the CDC refuses to acknowledge the possibility.  How many unborn children have been put at risk because of their denial?  It's a question we may never have the answer to.

I have not even begun to scratch the service of the problems with Lyme. I haven't addressed whether or not it is sexually transmitted (it's up for debate). I haven't talked about how many people with a CDC positive diagnosis can't find a doctor that is willing to treat them. I haven't mentioned the harassment of doctors who treat Lyme patients to the extent that doctors are terrified to treat it. I haven't talked about how the number of people with Lyme keeps growing and growing.  I haven't talked about how Lyme patients end of paying thousands and thousands of dollars out of pocket. I haven't talked about how Lyme patients are vilified by the medical community for being crazy. I haven't talked about how the CDC thinks ticks honor state lines making Lyme "impossible" outside Connecticut and New York. I haven't talked about how the doctor mostly responsible for creating CDC guidelines think Lyme Disease symptoms are really due to "the aches and pains of daily living." I haven't talked about that even if you're lucky enough to find a doctor to treat you, and you're rich enough to pay out of pocket for treatment, it could take you years to get better. And you might not ever get better, you might be permanently disabled or you might die. 

Am I concerned about the Zika virus? Of course. It has the potential to be devastating, and it has been devastating in other countries. However, it is incomprehensible to me how so many Americans can be worried about it when they haven't noticed an equally serious disease that they are much more likely to contract. Lyme Disease is an ugly disease. It is a common disease that most people don't even know is common.   It's a disease the medical community refuses to deal with. It's a disease the government refuses to deal with. It's a disease that has left an untold amount of bodies in its wake, and it's already here. 

.

Sunday, January 31, 2016

8 reasons Fibromyalgia is the worst



In response to the criticism about my "5 ways Fibromyalgia makes you awesome" post being too positive, I decided to write a counter post. I even upped the ante by coming up with eight things, instead of five! Warning: this post contains sarcasm. 

1. It turns you into an idiot

Fibro fog takes over your brain and suddenly the once intelligent person you were goes out the window. The next thing you know you're forgetting Dr Pepper in the freezer and it ends up exploding all over the place, this has never happened to me. It's even better when you forget someones name when you've known them forever and you're in a conversation with them. It really makes you feel special.

2. A lot of gross things happen to you

I plead the fifth here. Try not to use your imagination.

3. It makes you fat

So deliciously fat. Because all sick people do is sit around and eat twinkies all day.

OR what is more likely:

Some doctors like to claim people are fat and then they get Fibromyalgia, when it's actually the other way around. Believe it or not, being in pain and feeling tired all the time does NOT make you want to exercise. SHOCKING! In fact, it's actual a barrier to exercise! So sometimes people gain weight. Even people who try not to. Imagine that!

4. It takes all your money

Fibromyalgia is expensive. It destroys your body, makes working difficult, and then makes you spend tons of money on doctors appointments and coping techniques. It practically sucks money from you. My yearly cost of heating pads alone is several hundred dollars. That's not even factoring in the cost of health insurance, co-pays, or prescriptions. There is a reason most people with Fibro are broke and it's not because we spend our money on Disney vacations.

5. You can't eat things that taste good anymore

Everyone with Fibromyalgia has been on some sort of diet. Some go gluten free, some do juice diets, some go vegan or dairy free. There is an endless amount of confusing advice out there about how diet effects Fibro. It's like doctors don't think we are miserable enough, so they take away our chocolate and pastries so our misery will be complete. And then we STILL get in trouble for being fat. I mean, what else could they take away from us?

6. Everyone expects you to be inspirational

"Oh I don't know how you live like you do, I could never do it. You're SO amazing"! Barf, we've all heard it. I'm not an inspiration, I'm a cranky 31 year old that's pissed I can't have a real life. Too bad no one asked my opinion on things.

7. It changes your personality

"Wow, you've changed SO much." Yes, believe it or not my entire life being turned upside down HAS changed me.  *Gasp*

8. People tell you to smile a lot when you don't want to

If I had a dollar for every time someone told me to smile when my life was in the shithouse. I hate being told to smile. I will smile when I darn well feel like it. I don't have to smile when everything is falling apart. Please leave me and my RBF alone.


So there it is. I hope you enjoyed my cranky, angry, sarcastic, and hostile post!



Wednesday, January 20, 2016

Bearing the joy of others


I pray you if you love me, bear my joy
A little while, or let me weep your tears;
I, too, have seen the quavering Fate destroy
Your destiny's bright spinning--the dull sheares
Meeting not neatly, chewing at the thread,
Nor can you well be less aware how fine,
How staunch as wire, and how unwarranted
Endures the golden fortune that is mine.
I pray you for this day at least, my dear,
Fare by my side, that journey in the sun;
Else must I turn me from the blossoming year
And walk in grief the way that you have gone.
Let us go forth together to the spring:
Love must be this, if it be anything.

(Edna St. Vincent Millay)

I am not the type of person who enjoys poetry, but this poem really struck me. The first line just grabbed me at I pray you if you love me, bear my joy. So often I complain about the things others are doing or accomplishing that I can't do. I complain about people acting like I'm worthless because I don't have the same achievements and it hurts me when people constantly brag about how many wonderful things they are doing. I can't stand people who constantly feel the need to advertise how wonderful they are. At the end of though day though I know that if I love them I should bear their joy.

I'm sure this poem means something different than what it means to me (I never understood poetry, I'm way too literal) but it was a good reminder for me to be happy for others. Through the strength of love I can endure the golden fortune of others even if there is no golden fortune for me. Through the strength of love I can ignore my aching heart and bear the joy of others. I can cry happy tears for their golden fortune even while momentarily suppressing my sad tears brought on by chronic illness. Love is taking someone by the hand and staying by their side through their journey as they stay by your side through yours. As we bear their joy they can walk in grief with us as we carry our burdensAnd in the end we can go forth together in the spring

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