Monday, August 24, 2015

5 "helpful" things that don't really help people with chronic illness

1. Saying things like, "But you don't look sick"!

It's really nice of you to say that I look good, but I have an invisible illness. You can't see my pain, but believe me it is there. On a regular day I'm in more pain than most people could ever imagine, but I'm very good at hiding it.  But if you look closely you will notice that I hold my body in a different way than most people. You may notice the lines of tension if I'm trying to keep the pain at bay. You may notice that I'm especially quiet.  You may notice that underneath my makeup I am pale and have huge circles under my eyes. You may notice that I've gained some weight lately, because I've been in too much pain to exercise and my body is too messed up to regulate correctly. You may notice that I seem spaced out, and that's because I had to take pain medication that day.

The signs are there. Even if they are not visible immediately. The more you spend time with me, the more you will notice. My invisible illness will become more visible to you.

2. Offering suggestions on potential cures

There is not a magic cure out there for me, and you need to accept that. I have spent a lot of time and a lot of money investigating different products for things that might ease my pain or help fix my body. I have had very little success. The things is, if your potential cure actually worked I would know about it, and so would everyone else. Don't you think if a shake could cure chronic illness that everyone would be downing those shakes like crazy? I know I would, but a shake isn't going to cure me. Neither will essential oils or any other magic pills you want to sell me. Please just leave me alone, I don't have the money support your home business with my pain.

3. Telling sick people how inspirational they are

I am not your inspiration. There is nothing about my disease that is awesome and inspiring. I am not special. I'm a normal person who was dealt a crappy hand and is just trying to find a way to live my life. I am not an object to be admired. I am not accomplished just because I'm alive, I'm accomplished because I am me.

4. Saying, "But if you have faith you can be healed."

Bull shit. Faith is not a cure for chronic illness. Bad things happen to good people for no reason all the time. That is called life, and whether you have faith or not has little influence on the outcome. There are many good things that come from faith, but miraculous cures are rarely one of them.

5. God won't give you more than you can handle

I hate this phrase. God will absolutely give you more than you can handle, he's certainly given me more than I can handle. I'm basically a disaster. Additionally, this phrase is not in the Bible and it is  taken out of context. The actual scripture is:

Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you and learn of me…for my yoke is easy, and my burden is light.” (Matt. 11: 28-30)

The scripture is not saying that God won't give us more than we can handle, but I'm not going to get into a theological argument about the scripture. I just want to say, STOP. Stop saying this, It is hurtful and damaging, and definitely not true. 

Tuesday, August 18, 2015

No, I didn't just do that

You know when you have one of those days that you realize you are way too angry at the world? Like when a store royally screws up and then blames their screw up on you and then you completely lose your temper and raise your voice at said idiot even though you promised that you would never ever do that to somebody in customer service because of the years you suffered getting yelled at? 

Yeah, me neither.

After said screw up (which we will pretend did not happen, even though it was TOTALLY justified because some people are morons who then pretend that it is actually you that is a moron and then try to rip you off) I may or may not have realized that I have a lot of built up anger, pain, frustration, possibly more anger, and stress. I used to be a nice person that very rarely lost my temper and these days I seem to be constantly seeing red.

A big part of the problem is that my kids have been home all summer while I have been dealing with kidney stones on and off. Managing my regular pain is hard enough, but when you add in kidney stone pain, and then add taking care of two human beings for 24/7 it's enough to make anyone nuts. Plus the two human beings in question seem to have been put on this earth with the instinct to eliminate each other which therefore puts me on prevention duty for eternity. For example, yesterday they were fighting over a glass of water. A freaking glass of water, you know that very replaceable resource that comes to us through the sink at a very low cost? It's not like there is a limited amount of water in our house, we even have lots of glasses to put water in. I promise the kids are allowed to get themselves a drink of water anytime they want. Yet my kids fought over it like it was a precious diamond or stuffed crust pizza. They screamed bloody murder at each other. My son hit his sister, ran to his room and slammed the door, all while continuing to scream at her. She then ran to his door and started banging on it screaming at him. He opened the door and slammed it a couple times to make sure she knew her fingers were in danger. She started screaming her brother was trying to kill her, and it devolved from there. But don't worry, ten minutes later they were holding hands and reading a book together. 

There is less than a week until school starts and at this point I can't guarantee I'm going to make it. It's entirely possible my kids will stage a coupe and then lose control when they can't stop fighting over who gets to be in charge. My daughter will whine and cry about how my son always gets to be in charge and that it's her turn so he needs to stop being mean. My son will just hit her and run off laughing to assert his dominance as king of the jungle. I will be left in my prison with only chicken nuggets to eat while Caillou is on endless repeat causing me to slowly go insane. 

But I digress...

This is what parenting does to you. It makes it so you can't even write a blog post or finish a complete thought and gives you anger issues, 

Wednesday, August 5, 2015

How do you tell the difference between Fibromyalgia and Lyme Disease?

Many doctors confuse Lyme disease and Fibromyalgia. Part of the problem is that so little is known about them. Both are new diseases that scientists are still trying to figure out, and their symptoms are so similar that many lazy doctors just diagnose patients with Fibro and never even bother with testing for Lyme. Most doctors still think that there is no Lyme Disease outside of the northeast, when in fact there are reported cases of Lyme in every single state in the US. That is just the reported cases, most cases by the CDC's own admission do not get reported. 

Another thing that makes an accurate diagnosis more difficult is that doctors are also grossly misinformed about the importance of the Lyme rash. Many doctors will not consider testing for Lyme if there is not a bulls-eye rash, but the truth is that a bulls-eye rash only appears about 50% of the time. The rash also does not have to be at the site of the tick bite, and it only appears for a short time. Often by the time a patient gets into a doctor, the rash is gone and the doctor refuses to consider Lyme. 

Another complication occurs when a doctor agrees to test for Lyme, but she/he relies on inaccurate tests and interprets the results of the test incorrectly. Both the ELISA test and the Western Blot are known to be inaccurate, and yet most doctors insist the ELISA test and the Western Blot must be CDC positive before diagnosis. The problem is the tests measure the patient’s antibody response to the infection, not the infection itself. This response takes 2-4 weeks to be made in quantities large enough to be consistently measured. It hits its peak at four weeks and then will only stay in circulation for about six months. So if you do not get tested at the precisely correct time, your test is not accurate. And yet doctors have the idea that if you get a positive it's probably false, when in fact it's the reverse. If you get a negative test, it doesn't mean you don't have Lyme.* There are also countless cases of patients being told by their doctor that their test was negative, but when they get a hold of the test results it was actually positive. The doctor just decided it was a false positive and lied to the patient about the results. Of course the repercussions of the doctors poor decisions are always visited on the sick patient. So if you get tested, make sure you get a copy of the lab results to make sure they are interpreted correctly. 

With all this said, I am not one of those Lyme Disease patients who thinks everyone with Fibromyalgia actually has Lyme. The problem is that doctors are ignorant and like to use Fibro as a cop out, "I don't know what's wrong with you and you're in pain, so it must be Fibromyalgia." It many cases this is true, but if you have exposure to ticks Lyme Disease should be completely ruled out before accepting a Fibromyalgia diagnosis. 

*If you want to see more information about the truly abysmal accuracy rates of two tiered testing for Lyme, go here and look under the two tiered testing section. 

Sunday, August 2, 2015

How do you survive?

I often get asked, how do you survive?

I survive by forcing myself to stay strong at all times. By not letting my strength ever crumble into weakness. By not allowing my pain to break me. By building up walls and making sure they stay there. If I allow pain to break me, I will never be able to put myself back together again. Last night I felt myself breaking. Yet another kidney stone just became too much. I'm only one person. I'm always in pain, but to add another layer of pain was overwhelming. I felt myself falling apart. My kids were asleep so I went into their room and sat on their bed. I watched them sleep and watched how peaceful they were. I was reminded how much I love them. Their peace brought me peace. It helped me to stop breaking, to keep myself together and to not give in.

I survive by channeling my pain. I channel my pain into my compassion for others and writing on my blog. I take all my physical pain and release it through my fingers as I write my frustrations, fears, and anxieties. While the physical pain continues to linger on, channeling it into writing gives it a direction.

I survive by closing myself off from others. I can't let anyone see how much pain I'm in because that will release the dam of pain I've built up. I pretend like I'm not in excruciating pain because I can't not be strong. I know I have people who are there for me, but they can't hold me up all the time and I'm in pain all the time. It may not be wise, but it's the only way I can keep myself together.

I survive by holding the pain at bay with the strength of my will. If I can just use my strength maybe I can prevent myself from completely giving into it.

I survive by being independent and taking care of myself. I fear depending on others because if my strength fails me when they aren't there I know I won't be able to handle it. It's both a strength and a weakness, but it's the only way I know how to keep on.

I survive by not feeling sorry for myself. When I feel sorry for myself I start to lose control of the pain. When the pain starts to take over I can't see anyone else, not even myself. All I can see is endless pain. I can't survive that way, so I fight.

I survive by refusing to never giving up. The pain wants to take over everything, but I won't let it. When the pain starts to overwhelm everything and I feel like I'm losing control, I take a moment to remind myself the reasons why the pain can't win. Namely, the people I love and care for. The pain can't take over me because I have to be here for them. They are worth fighting for. I am worth fighting for. I survive because of love.

Wednesday, July 29, 2015

What I love

We all deal with illness and pain in our own way, but one way I deal with it is by surrounding myself with the things I love. Sometimes I just need a reminder that life is in fact, beautiful.

I love sunshine. I've mentioned this before but I do not do well without the sun. I don't know how people in the northern climate do it. I don't know how I did it for the first 18 years of my life. I cannot function without sunlight. When it's boiling hot outside like it is now I  remind myself that at least it's sunny.

I love the sound of children's laughter. There is nothing more beautiful than the sound of children laughing and giggling. It never fails to make me smile. They are so happy and carefree and it's infectious.

I love the beautiful orange tree in my back yard. Technically it's my neighbors tree but most of it hangs in our yard. It has hundreds of beautiful oranges that brighten up our whole yard.

I love my friends and family. I'm so lucky to have wonderful supportive people in my life. I'm glad I have people I can rely on and who rely on me. I'm glad there are people out there who know who I really am, and appreciate me for it.

I love the outdoors. Nature is how I commune with the divine. It's easier to believe in a loving God when I'm surrounded by beautiful things.  I feel strengthened when I'm not surrounded by people and concrete like I am in my day to day life. There is something about feeling the wind in your hair and listening to the animals that just brings me peace.

I love fresh juicy peaches. Random I know, but the peaches in Texas are terrible. They make me long for the amazing peaches I used to eat as a kid in Michigan. We'd go to the orchard and buy a giant barrel of peaches and then eat as much as we wanted! I was thrilled when we visited Seattle last year and found some peaches that were so juicy you had to eat them over the sink. That's how peaches were meant to be eaten.

I love swimming. I've always thought I should have been a mermaid. I'm more comfortable in water then on land. If I had a pool I would float in the water all day long, it's just so relaxing. Since my illness I've found that I'm in less pain in the water so that's another bonus.

Monday, July 27, 2015

Positive thinking is as coping mechanism, not a cure

No one would ever accuse me of being an optimistic person. If you ask me if the glass is half empty or half full, I'd say that it has water in it.  My family likes to tell me I'm like Eeyore because I was depressed in high school (because four years of depression in your teen years apparently brands you for life), but I really haven't ever been like Eeyore. I like having fun too much.  I don't consider myself a pessimist, I consider myself a realist. The world isn't always sunshine and rainbows, bad things happen all the time, but there are many wonderful things that happen as well.

Despite my realistic ways, I think there is a lot to be said about the positive thinking. I always cope better when I'm being positive then when I'm wallowing in despair.  It's been found in studies that when you are experiencing positive emotions like joy, contentment, and love, you will see more possibilities in your life. So when you're thinking positively about your illness it's easier to see that illness isn't an endgame. That just because you can't do what you used to doesn't mean your life is over. It's easier to see the myriad of options available, even if they weren't the options you wanted. 

However, I get really tired of hearing how positive thinking can cure any ill and if things are going badly, well then it's because you have a bad attitude. People like to think this because it makes them feel better about their control (or lack of it) of their own life. No one wants to believe that bad things could happen to them. The truth is that positive thinking is a coping mechanism, not a cure.  

As a control freak I understand the need to feel like you have to have be in control, but the truth is none of us are fully in control of what happens in our lives. Too many things can happen as a consequence of someone else's decisions and bad things just happen to good people sometimes. It doesn't matter if you're  a good or bad person, or if you are depressed or optimistic. If we could all control our whole lives through the power of positive thinking there would be a lot less sickness, death, job loss, mental illness, poverty, or heartbreak.

How we handle bad situations can and does have a real effect on our life, but it doesn't change the nature of what happened.  As someone with chronic health problems I can be positive about my altered life and that can help me to cope, but I can't change the fact that I am in pain. And sometimes it's even okay for me to be sad about what I've lost and it's okay to be angry as long as I don't spend all my time feeling sorry for myself. I have to be sad sometimes because I need to get the emotions out so that I can move on. Constantly suppressing all negative emotions will do no one any favors in the long run.  If we deny that bad things are happening and constantly pretend that things are just peachy eventually we are going to crash and burn.

For me what is more important then being endlessly positive is to live hopefully. Despite the fact that I sometimes get sad about my illness and despite the fact that sometimes I am angry, I still carry hope. I don't have a lot of hope that I will be cured, but I continue to hope for a good and joyful life. I continue to hope that I will find better ways to deal with my illness. I hope that I can have empathy for others because of what I have experienced. I hope that I can still be the person I want to be despite my illness.  I refuse to spend the rest of my life is despair because of what I endure now and will probably always have to endure. Hope, not artificial positivity, is what keeps me going and keeps me fighting.

Wednesday, July 22, 2015

10 struggles only people with chronic pain will understand

1. Putting on long pants

When your thoughts go like this: "Can I lift my legs high enough? I'm so stiff I can barely move. How does anyone ever do this standing up? If I sit down on the floor to put them on will I be able to get back up again? "

Help, I'm falling and I can't get up!

2. To pee or not to pee

When you wake up because you have to pee, but you hurt too much to move so you lie there wondering how long you can hold it. You play a game of chicken, which will triumph pain or pee?

3. Long lines

You've got enough energy to run some errands, maybe go to the store. Then you get stuck in an endless line behind  5 people who feel the need to write a check and buy cigarettes. Just get a credit card people, for goodness sake! You can feel your legs start to cramp up as you stand waiting. You know your going to pay for that lame trip to the store. That deodorant so wasn't worth it.

4. Bras

Anyone sensitive to pain knows that Bras are basically knives digging into your side sanctioned by the Patriarchy to torture women into submission. The second you walk in the door to your house you throw that baby. Freedom!

5. Weather changes

That rain that everyone has been praying for is finally rolling in, but you are in too much pain to enjoy it. Instead of dancing in the rain you're in bed keeping company with Netflix and your heating pad and cursing your arthritic knees.

6. Keeping track of prescriptions and vitamins

Your medicine cabinet just isn't big enough so you have a giant bin under your bathroom sink. You try to organize your pills but there are too many to fit in the pill organizer! You give in and use an app to track your medication. The problem is you can't always remember if you took your medication or not. Did you or didn't you? If you did and you take another one you could seriously mess up your body. But if you didn't take it and you don't take another one then you could also mess up your body? You can't decided what to do. You're playing a game of Russian Roulette.

7. Exercise.

You're damned if you do, damned if you don't. If you do exercise you know it will increase your pain levels so you will have to ask for more pain medication. If you don't exercise the doctor won't believe you're really sick, you must just be depressed because you aren't trying to get yourself better by exercising ('cuz that totally works).

8. Being treated like a criminal for taking medication prescribed by a doctor

The dreaded moment has arrived. You clutch your prescription and tell yourself that a doctor believes that you need this medication so you're not going to take any crap. Sure enough the Pharmacist asks what kind of doctor you got the medication from. You remind them that it isn't their business and they huff off to get your prescription. The interaction leaves a bad taste in your mouth and makes you feel like you're a failure and a drug user. You remind yourself that if you were really a drug user, you'd have better drugs.

9. Heat or cold

You're muscles are hurting, but how will you ease the pain? Will you apply heat? Will you apply cold? Will you alternate between the two? How does the outside temperature affect the equation? This is getting complicated.

10. Nothing to watch

You're having a pain flare and you just finished your show on Netflix. How are you supposed to get through this? How can you fight the pain when there is nothing to watch? You watch a few minutes of 20 different shows sitting in your Netflix cue, but they just aren't entertaining you. Where are all the funny shows? Why is everything so stupid? You want to send Netflix an angry email about their very serious neglect of the Big Bang Theory (seriously, why isn't that on Netflix).

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