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).

Thursday, July 16, 2015

The hidden cost of chronic illness

I was inspired by this article to go back and look up my amazon purchase history and see what story it told. I quickly noticed that a large amount of my purchases were health related products. As I looked at when and what I bought I noticed a pattern in my purchases that coincided with the ups and downs of my illness. I also noticed that if you added up all my health related purchases over the last few years, it came out to a lot of money. What's really mind boggling is that most of my purchases were not made on amazon so this is a very small sampling of how much money I've spent over the years on my health. I wrote a post about how expensive chronic illness a while ago was, but I didn't fully take into account all the extra things I bought to make my life more bearable.

Just to be clear, I am not endorsing these products.

2010- 8 orders placed, most were books

In June of this  year was when I first began having symptoms. I read a lot because I was too tired for much else.  I spent a lot of time going to different doctors trying to figure out why. but I wasn't yet in a lot of pain. I still had faith that the doctors would find out what was wrong with me (the joke is on me).

2011- 16 orders placed, more books

This year I started getting sicker. I was getting frustrated by the lack of help from doctors, but I still thought if they could find what was wrong with me I'd be cured.  In December I was diagnosed with Lyme Disease and I thought I would be cured in 6 months. I knew it would be a hard 6 months, but at least I had an end date.

2012- 15 total orders

This year brought a lot of crushed expectations. The 6 month window my doctor initially gave me proved to not be accurate. I had spent a lot of money fighting Lyme and it wasn't working. So I did
some research on herbals and decided to try this one. Unfortunately as what often happens with unproven cures, it didn't help.

Samento, 31.52

2013- 29 total orders

This year brought poorer health and poorer spirits. I began to realize I was never going to be cured, but decided to work on lifestyle changes and try some more natural options. A few things helped and a few things didn't, but I spent a lot of money.  The heating pad I bought was heating pad number 4 since I first got sick. (I've had at least four more since then and none lasted, so I wouldn't recommend the product as long lasting).

Passionflower, 6.38
COQ10, 13.59
Activated Charcoal, 14.99
Heating pad, 34.88
Yoga for Arthritis, 7.00
2 Enzymatic Fatigued to Fantistic System Energy Revitalization, 27.98 each

2014- 54 total orders

This year brought more practicality. I'd tried herbals and multiple natural solutions and ironed out what worked for me and what didn't. This year I tried to get my body to recover from the damage the antibiotics did to my body and find ways to deal with the constant pain. 
Periobiotic toothpaste, 14.99
Compression gloves, 18.99

Foam massage roller,  35.77

Plus 4 more other health related purchases too boring to list.

2015- 28 purchases so far

This year so far as been all about finding ways to deal with the pain. My pain levels are at a record high, my hands and legs swell on a regular basis. I try to deal with it in anyway I can because doctors haven't provided any answers.  

Last years compression gloves didn't make it very long, so it was time for a new set. 
Compression gloves, 14.95
Time to try compression socks too. It's unfortunate that I live in such a hot climate and I'm covered in compression wear!
Compression socks, 13.00
I hoped this would support my knees more, and it did but it doesn't last very long and gets pricey very quickly.
Kinesiology Tape Plus FREE E-Taping Guide Wrap It Up with Highly Rated Best Premium Kinesio Athletic Performance KT Tape ,Advanced Adhesive, Water Resistant, and Highly Durable - Best Adhesive Technology - Pro grade 2 in. x 16.4 ft. Uncut Roll Perfect for any Athlete or Therapeutic Need. Crossfit Tested and Approved. Pregnancy pain tested and approved - 100% Guaranteed - Best for shoulders, ankles, knees, elbows and back. Great for weight lifting - Mone Guarantee - © 2014 KeepFit (Black)
Kinesiology tape, 11.97
We'll see what the rest of the year will bring. I have no doubt that I will try to find more things that can help me deal with my pain and fatigue, and most likely they'll cost me a great deal of money.

Monday, July 13, 2015

Living in denial of your illness

I am the queen of denial. I love to believe if I ignore my problems they will just go away. For example, one of my closest friends is moving clear across the country in a few weeks. I haven't confronted the issue yet, because I know when I do I will probably have a major breakdown. So for right now I'm trying to enjoy the time we have left and not think about the future in any sort of way because the thought of the future is majorly depressing. I'm so awesome at dealing with my feelings.

I'm also a professional at denying my illness. I like to pretend that it's not there, and that it's a problem I can set aside and ignore. When I'm in denial I can go have fun with my friends and be a normal person. I can do things a sick person shouldn't be able to do. The problem is that reality always comes back to bite me. Because the truth is that I'm not normal and I'm not healthy. Intellectually I know this, but there is always a part of me that enjoys pretending. I like pretending that I can do everything everyone else does, and I like living a fake life even if it's only for a few hours at a time.

Unfortunately, in the long term denial makes my physical and mental health worse. Inevitably if I go out and pretend I'm just fine I overextend myself. The result is that it takes me days or even weeks to recover. The enforced recovery time then makes me miss out on things, which then makes me depressed. A part of me knows this so I'm working on recognizing my feelings of both despair and hope so that I can finally get to a place of acceptance. There is a lot of power in acceptance. As difficult as it can be to reach that point, when we finally accept our limitations we can feel peace.

Acceptance is not being weak and it is not giving up. Acceptance in human psychology is a person's assent to the reality of a situation. It's not approving of the situation or submitting to it. Acceptance is not something that is forced on us, it is a choice, the powerful choice that we can make to take control of our lives. We may have no control over our illness, but we can control how we react to it.

That's easier said then done of course because I've been struggling with acceptance for five years. A lot of that has to do with my extreme stubbornness and refusal to confront the issue. I like to control everything and not being able to control what's happening to my body is pretty much my worst nightmare. For now I'm focusing on not trying to control my disease. I do what I can do to improve the outcome by eating right, exercising the right way, and taking the right medications.  After that though, I accept that the outcome is out of my hands. I will have to adjust and adapt to whatever life or my disease brings me.

Book review- Until the Harvest

Until the Harvest by Sarah Loudin Thomas

This book was provided by Bethany House in exchange for an honest review.

I had a hard time getting through this book. I was not aware that it was the second book in the series when I agreed to review it, and I wonder if that is part of the reason why I struggled to relate to some of characters. From the beginning I loved Margaret and Mayfair's relationship. I enjoyed reading about their love for each other and how it helped them each grow and learn but I struggled with Mayfair's "gift" and its use in the story. It all seemed a little too convenient and contrived. Henry also really got on my nerves. It wasn't because he was flawed and made bad decisions, I love flawed characters, but I just didn't feel he was that great of a person. He really came off as shallow and selfish to me and I loathed him throughout the whole book. I think the author tried to make him sound improved in the end, but I couldn't overcome my dislike of him. Overall I can't give a rousing recommendation of this book, but I've certainly read worse

Monday, July 6, 2015

Chronic illness is lonely

There's a moment when it hits you, that because of your illness you've been forgotten. You've tried to stay around, to not disappear every time your pain level spikes, to help out other people even when you're hurting, but it wasn't good enough. You did everything to pretend that you were well so that you could fit in and belong with the normal people, but you failed. You have faded into obscurity because You are not like them.

You can't do everything they do, so you don't belong. There is a barrier between you and them, a barrier that is very difficult to cross. Despite all the work you do to try to cross it, in the end only they have the power to reach across the barrier and pull you to the other side. Other people are moving on with their lives. They're managing their careers, creating families, developing new friendships. And you, your life depends on how bad the weather is that day, or how long it takes you to recover from standing in line at the DMV, or whether or not the doctor screwed up your prescription. You don't know or understand what is going on in your body, but you wish that somehow you friends did. Because maybe that would take away the pain.

Your life is


Sometimes you feel ashamed. Like it's all your fault that you've found yourself alone. If only you could have done better or fought harder. If only you hadn't pushed people away to avoid judgment and hurt.  If only you could be better, happier, stronger, or selfless. You must have become too withdrawn, too prideful for others to want to be around you.

But it's alright you're doing fine.

* If you know me in real life, don't worry about me after reading this depressing post. I wrote it some time ago, but I wasn't sure if I should publish it. I just finally got the courage to post it today because pain shouldn't be painted over. 

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