There’s Simply No Excuse.

We’ve all seen them, those inspirational pictures and stories of people who have endured great odds to become successful. People with disabilities, but still managed to overcome and win a sport or defy expectations. These are often (ok, pretty much always) followed up with the phrase “What’s your excuse?” and I’m here to say, “Who are you to ask?”.

Some people may find motivation in that medium, but most of the disabled community find it demeaning. Think about it. Unless you’re looking in a mirror, you have NO idea what that person goes through every single day. There are some amazing people out there with disabilities, that do incredible things with the hand that has been dealt them, but to judge others lives based on what how those people live is not doing anyone justice. Here are a few examples.

Morgan Freeman has Fibromyalgia. Many people do not know this, but it’s true. He has said that after a car accident, tendons in his arm were so badly damaged that he could barely move and the Fibromyalgia developed as a result. So, how can he still work and make insanely incredible movies when other people with the same condition complain about even working? Because no two people are the same! He has different symptoms and I know for a fact he uses his pain in his performance. He also smokes a lot of medical weed, he has made that very clear in interviews. It’s his main medication and it works.

Rick Allen (the drummer from Def Leppard, you know… he’s only got one arm). Seriously, I cannot tell you how many times I have heard this one come up! “Well, if Rick Allen can do it, I bet you can too.” Yeah, well I am not Rick Allen. He’s a unbelievable talent and how he does is frankly beyond me, but saying that anybody can do anything just because someone can drum with one arm, is not motivating.

Paralympians. I have SO much respect for all the athletes at the Olympics! I cannot even imagine all the hard work that goes in to getting there. Especially for those competing in the Paralympics. Each and every one has obviously endured some amazing journey to get where they are, and there’s no doubt in my mind that most of them deal with pain on a daily basis (as do many of the athletes in the Olympics as well). That being said, each and every one of those Olympians/Paralympians are unique! Their conditions are constantly monitored by doctors and specialists. To suggest that another’s pain is less valid because someone with the same condition can win a gold medal, is degrading and disrespectful.

Elderly individuals that stay fit. I love to see senior citizens doing yoga, jogging, and lifting weights. I think we all do. It means they’ve either taken good care of themselves throughout their whole life, or they’re doing everything they can to add years onto their life now. This one means a lot to me. As many of my readers know, I recently lost my Grandmother. It was a difficult loss because we were at odds for many years and only recently became close. I miss her dearly and would give anything to see her up and running or doing yoga. I just cannot stand the images I see that say “85 years old… what’s your excuse?” and have an older gentleman with bulging muscles. Well, I’m 39 and I am now using my Grandma’s old walker. This is not a choice we make. I am not sitting around, eating bonbons, and just feeling sorry for myself. If I could do what these amazing people are doing, I would (maybe not the bulging muscles).

There are plenty of other examples I could add here, but honestly I will just get overly riled up and that won’t benefit anyone. This is an emotional topic for those of us with invisible illness, because we deal with a constant barrage of “motivational” images on a daily basis (especially on social media). We’re going to see it a lot more during the Paralympics, so I wanted to get this out there and make sure people really understood the true damage they cause. Now, there is no excuse for posting it.

 

The Positivity Police

“Just stay positive!”

“No one wants to be around a Debbie Downer.”

“When you have a bright outlook, nothing can look too dark.”

Shut. Up.

I know that being negative all the time is no fun for anyone, especially our friends and family. But there are some people who take it upon themselves to act as our positivity coaches, the one that’s going to pull us out of our “funk” (no matter the cost). Then it turns into a boot camp, instead of a counseling session. Every time they speak, the condescension oozes off of them like Slimer from the Ghostbusters. Guess what, I don’t need it! Surprisingly enough, I am a very positive person. If I were not, I wouldn’t be here.

Let me explain something very important (this is mainly for the able bodied people readers, but anyone dealing with chronic pain make sure to pass this along).

If we complained HALF as much as we felt like it, we would never stop! It would be 24 hours a day, 7 days a week. So, when we mention in any small fashion that we’re in pain, we are in extreme pain. Something different is going on that is over and above our typical pain, and it’s so bad that the barrier has been breached. It is to the point that something has to be said. If we don’t say it, we run the risk of everyone saying “Well, why didn’t you say something?!” when we end up in the hospital, can’t work the next day, and so on. So, do NOT blow it off as just another bout of negativity or complaining. It is serious, always!

To all the positivity police out there… stop it, please. I’m not saying to never pass on a positive message, we appreciate it! I’m saying, don’t expect us to never be negative about our condition. It is going to happen, and we have to be able to feel that. We are entitled to our feelings, as you are entitled to yours! My pain has forced me to see the world in a whole new light, and (even though I 100% believe in being positive) I just don’t need anyone else constantly telling me the best way to stay positive. Now, I’m sure I sound like a huge downer, I swear I’m not! I’m upbeat and tend to be a very strong person (I even pass along some of those positive messages on social media sometimes). My point in all this is when someone has chronic pain, the last thing they need is other people forcing a bunch of anti-negative rhetoric at them. Be an ally for people with invisible illness! Be there for them, don’t treat them like their pain is anything less than what it really is… horrible.

The Harsh Truth About Not Being Sick Enough

When you live with invisible illness, you hear it all the time… “You’re too young to be so sick!” Well, how is sick supposed to look, and how old do I have to be before I can be sick?

The truth is, there’s no age limit on illness.

One of the biggest obstacles we face is getting people to take us seriously, which is truly insane. There is this misconception that if someone isn’t in a wheelchair, then they must not be all that ill. Or that the only real forms of diseases that exist are ones they’re familiar with. Conditions like cancer or… other forms of cancer.

Now, I am in no way saying cancer is not a horrible disease! I have had multiple family members pass away from different forms of cancer and friends that have been through it as well. I’m saying, there are MANY people who honestly think that if you’re sick, but it’s not cancer, then it’s no big deal. I have been told “well, at least it’s not cancer.” Very true, at least it’s not something treatable. It’s just something I’ve lived with my whole life, and will continue to live with forever. Sorry… getting back on track here.

How young is old enough? Would anyone go into a children’s hospital and go up to a child in a wheelchair then say “You are too young to be on so many medications! You just need to exercise, you’ll feel better soon”. No. Or if they did, everyone would throw a fit and kick them out. Because it’s a crappy thing to say to someone in pain, especially someone young who has a long road of frustration and recovery ahead of them. The only difference between them and us, is we have to constantly remind people we’re sick.

One day we may need to use a cane to walk, another we might do just fine without it. Then a flare hits and we’re lucky if we can get out of bed at all! People stare if we use the scooter at the grocery store, but the alternative is not getting food for our family and that is just not an option. Sometimes we don’t use the handicapped spot, even though we have the placard, just because we’re afraid of that note from condescending onlookers. Or if we do use the placard, we make sure everyone can tell just how much pain we’re in as we enter the store. Because, there’s a good chance that by the time we leave, we might not be able to walk on our own.

So, where does that leave us? In a no man’s land of tolerance? Desperately trying to gain approval from family, friends, doctors, specialists, teachers, co-workers, bosses, and anyone else who will listen. We just want to be heard! We want people to see us for who we are, not for what they think we should look like. It’s important to note that a few commercials on TV by prescription drug companies do not reflect the true nature of invisible illness! It’s excruciating pain, that does not go away with one daily pill… no matter what that pill is. There’s no miracle cure, no diet shake that works for everyone. Some people have had some pain reduction with things like this, but pain is not one size fits all and neither is treatment.

My point in all this is, please stop judging people based on age and outward appearance. You wouldn’t do it if they were in a wheelchair, don’t do it when they’re not. Period.

Digging up the Past

Thanks to Facebook, I was reminded today that it’s been six years now since I was released from a ten day stay in the hospital. Now that might not seem like a big deal for someone with as many conditions as I have, but this particular hospital stay was life changing (and not at the same time). I haven’t talked about it much, but maybe it’s time I did.

In other blog posts I’ve mentioned my close call with suicide, but just in case this is your first time reading my posts, I’ll give you the cliff-notes version. I had it all planned out, car accident (faulty brakes) and no one else hurt, but in the end I couldn’t go through with it. My kids were too important to me, I couldn’t put them through that. But that’s not why I was in the hospital. I went to an out-patient rehab facility for that one. That was over a year before my ten day hospital stay.

Six years ago (and a few months) I started seeing a new pain management doctor. He was unimpressed with how ineffective my treatment had been up to that point, especially with regards to my medications. Specifically after my “attempted” suicide (personally I don’t consider it attempted, but that’s what they kept calling it).  He wanted to completely redo my meds, but that would require drastic measures. I had become so dependent on my prescriptions, I would have to be hospitalized and weened off of them. Just weening off one at a time would take three months per med, WAY too long! But there was a catch… I had been suicidal. Legally, they had to put me on suicide watch. So, I went to the “Psych Ward” to detox from prescription medications.

Now I am not a prude, but I am also a “good girl”. I have never smoked (gross, seriously), drank alcohol (see my post “The Drinking Game”), or done any illegal drugs of any kind (I’m not opposed to medical marijuana, it’s just not legal here yet). So, this felt like an incredible low in my life! I was on 24 hour watch. I had to sleep with the door open, an aid had to accompany me when I took a shower (really), and that was just the humiliating stuff. The worst part was the actual detoxing!

There was a reason I was there, which I quickly began to understand. After only a day of reducing my meds, I had a constant migraine. After a few days, I was extremely sick. It was was nice to have other people there that were going through very similar problems. We had group therapy sessions, but I was often in too much pain to really concentrate. It was still nice though. Eventually I was completely off all my old medications, and I was miserable. My husband came to see me as often as he could, and even brought the kids when I felt strong enough. I’m a very good faker, I wanted to see my kids as much as possible. It made a huge difference!

After about a week, they started introducing the new medications he was putting me on and life began to get back to “normal”. My numbers were looking good and they decided I could be released in a few days if I kept doing so well. I had even made a few friends, I was getting used to sleeping in a hospital bed (to the point I’ve had trouble sleeping in a regular bed since then and had to get an adjustable bed, weird I know), and my spirits were climbing. Things that were not getting better… my headache, my appetite, and my general need for privacy.

I have never spent so much time with strangers in my life! I do not recommend it. I may seem like an outgoing person, but I’m actually quite shy (until you get to know me). I’m the kind of person that will end up being your best friend for life, but you’re going to have to be the one to start the conversation… because I’m not going to do it. I am a social armadillo, I see people and roll up into my shell like “don’t mind me, I’m just a rock”. But once you get to know me, I swear I’m a nice person (under my shell). So to be thrown into a situation where I have to interact with that many people, for ten whole days was exhausting! The group therapy sessions weren’t so bad, because I could just sit quietly unless I had something to say. But unless I wanted to just sit in my room all day and stare at a wall, I would have to go out into the common room and interact with people. Ugh. It was intentional, I know that, but I was very happy to be going home!

I finally got the okay to go home and everything really hit me. What if I have a relapse? What if these new meds turn on me and stop working? What if this? What if that? I started having a panic attack, but I didn’t want to draw attention to myself. the last thing I wanted was to stay there another day! This had happened to me before, several times. I finally got myself calmed down. I knew that there was no point in playing the “what if” game, and the best medicine for me right now was holding my kids. So, I went home, gratefully.

Less than a year later, my insurance changed and one of the medications that I was put on (that was actually really helping control my pain) was no longer covered. I had to immediately stop taking it. I did everything I could to get even enough to ween off of it, but there was nothing I could do. If I had known, I would have been weening down off of it for a month, but instead I had to go “cold turkey” I got extremely ill. I also lost the doctor that helped me in the insurance change. So all the progress I made in the hospital went down the drain within a year. It was detrimental to my health. So, I look back at my time in the hospital with mixed feelings. There were some very positive moments, and some that I wish I could forget. There are some medications that I started taking there that I’m still on that are still helping me, so that’s good. But all-in-all, because of a change in insurance, I’m back where I started.

A Pain in the Art

If you’ve ever wondered why so many people with chronic pain (or depression, anxiety, auto-immune disease, etc.) have tattoos… you’re not alone. It tends to be a trend among the “invisible illness community” to subject ourselves to tattooing, and (whether we realize it or not) there is a reason.

Every day, those of us with constant pain deal with multiple challenges. From just getting out of bed, to taking a shower, and so on. Nothing is easy… nothing! So, why subject ourselves to the pain of tattoos? Good question. There are actually a lot of answers, I’ll go over just a few that I have found to be true.

To remind myself why I’m still here.
– I have dealt with clinical depression for as long as I can remember, but it all came to a head several years ago when I planned out my suicide. I didn’t go through with it (obviously), but the nagging thoughts are always there. When the semicolon tattoos became popular for suicide awareness, I knew it was going to be an important one for me to have.

They are an outward expression of my inward feelings.
– Very often we suppress our feelings, and it can be extremely difficult to explain just what we’re going through. For some people it could be a simple flower, that represents beauty. For others, it’s an animal or even cartoon character. Whatever the image used for the tattoo, you can bet that it has a deep personal meaning for that person.

Because the pain of getting one is nothing compared to my everyday pain.
– A lot of people just cannot comprehend this, but it it is true. Obviously some tattoos hurt more than others, and it isn’t a bed of roses or anything. But if you get an artist that knows what they’re doing (especially for those of us with EDS and super thin skin), it can be much less painful. Plus, this is literally art that lives on the body. Personally, I am willing to take on a little bit of extra pain for that.

I am no longer worried about what other people think.
– For so many years I struggled with the idea of tattoos because I wanted to be an actor. I know it sounds far-fetched, but I had been acting since childhood. I’ve done local commercials and full-figured modeling, I love theatre and miss being on the stage! So, getting (visible) tattoos was a huge no-no for me for many years. When I finally realized it wasn’t in the cards for me, the first thing I did was get a wrist tattoo (that was specifically designed to remind me not to let my invisible illness hurt me any more than it already has). I also worked for a company for several years where no visible tattoos were allowed, but I had just recently had to leave that job because of my illness. So, the timing was perfect.

There are plenty more reasons why people in pain get body modifications, but these are mine. I plan on getting several more over the next few years, as long as I can afford them!

(If you have any other reasons how your tattoos have helped you, or why you think they are good for people with chronic pain… please tell us in the comments. Thanks!)

Faith in the Midst of Pain

Websters Dictionary definition of “Faith” (noun) \ˈfāth\

: strong belief or trust in someone or something

: belief in the existence of God

: strong religious feelings or beliefs : a system of religious beliefs

For those of us with invisible illness, which pretty much always includes chronic/widespread pain, faith can be very difficult. Not only in a deity, but in others around us. This post is going to break down the definition of faith and how we can use it to our benefit, not allow it to break us down.

I grew up in the church… literally. Before I was born, my parents were not “church goers”. But just about a year before I arrived in this world, they found God and started attending church on a regular basis. So, when I was born we spent a LOT of time in church. We were the family that was there every Sunday (two services in the morning and one at night), Wednesday nights, church camp during the summer, and anything else we could possibly be a part of… we were there. But truth be told, I didn’t mind! I loved my church, all my friends were there and it was the one stable part of my life. We moved around a lot and eventually my father became an associate pastor, so it really became a second home. Throughout all of it though, my own spiritual journey was a roller coaster.

Even from a very young age, I dealt with crippling depression. I internalized it, of course. Everyone knew me as the perky kid, the pastor’s daughter that “could do no wrong”, but I was haunted all the time. Every time they called people up to receive prayer, I was the first in line. I knew something was wrong with me, I just didn’t know what. I thought I had to be saved, over and over again. Finally a camp counselor noticed what was I doing and pulled me aside. I explained my feelings and she told me about her own struggles with depression. It hit me that this wasn’t something I had to be “saved” from, I already was. God was going to take care of me, and things started looking up. Until my body started falling apart.

I had always been a little sick, “growing pains” or so I was told. But as I got older (late teens, early 20’s), my whole body fell into chaos. One real test of my faith came when I found out I had a rare form of cystic growth pattern on my ovaries (sorry if this is TMI, but it is very key to my story, and I’ll do a whole blog post just on this in the future). Now, I was from a fairly large family and had always wanted several children, so when my doctor told me that it would be extremely difficult to conceive when I was 17… it shattered my world! I was already dealing with chronic depression and every day pain. My cramps were so intense I couldn’t move when they started, which is what had sent me to the doctor in the first place. They were unable to do anything about the cysts, they would explode in time anyway (which just means more pain). So, to a 17 year old it was basically the end, or so I saw it. Then… something even worse happened that brought it all into perspective. A friend (that I knew, but unfortunately never really got the chance to know well), that went to my church and was in my class at school, committed suicide. It hit me like a ton of bricks. How many times had I considered doing the same thing!? His mother asked me to sing at his showing, and it was one of the hardest things I have ever done in my life. I couldn’t make it through the whole song, I was crying too hard. I’m crying just thinking about it now! (Ok… pulling myself together, back to the story.) Some people seemed to think what he did was selfish, but I knew it wasn’t. I knew how he felt. I knew the pain, the loneliness, the longing for the other side. I yearned for it! (There are days I still do, but we’ll get to that later.) It was then that I knew my faith was totally real, because I knew it was God that quieted my soul. Not my own will, and not my own intentions, but that outside force saying “I’m here for you… however you need Me to be.” That day changed me, forever!

Since then, I’ve lived in several different cities/states, and I’ve even been on a mission trip to the Dominican Republic. I’ve worked in different churches as a youth leader, camp counselor, and nursery assistant. I’ve done my “fair share” of “church stuff”, but does that make me a better person than anyone else? NO! I don’t consider myself religious. I consider myself faithful. Let me explain that better. Let’s look back to the description of faith at the top of the post.

Websters Dictionary definition of “Faith” (noun) \ˈfāth\

: strong belief or trust in someone or something

: belief in the existence of God

: strong religious feelings or beliefs : a system of religious beliefs

So, when I say I’m a “faithful” person, I’m not just saying I’m faithful to God, I’m faithful to everyone (including myself).

How about this one?

I have faith in the existence of God and I have strong “religious” feelings. But I am not defined by my religion. Is this making sense yet?

Ok, I’m a big fan of this one. My faith gets me through the tough times. Which for me is all the time… so my faith is what gets me through. I trust that God will see me through all the s**t I deal with every day (yes, we Christians can have dirty mouths too, but this is a family friendly blog so I censored myself). I know that He’s there for me, because of all those times I’ve wanted to drive straight into a wall, He steadies my heart and brings my life back into focus. When the panic attacks take hold, it’s that feeling of His peace that calms me. He even helped me out on the day I had planned out my suicide.

It seems like an awful thing to say but even as a mother of two and wife I was going to end my life. I had it all planned out even. I won’t go into specifics, but in the end I didn’t go through with it (obviously). I went to my husband and told him about my plans, he acted quickly and took me to the Stress Center (after making sure that’s what I wanted, which I did). After several weeks of counseling (with a much more competent counselor, things calmed down. Do I still have suicidal thoughts? Of course, but I don’t plan on acting on them!

I know a vast majority of people think I’m insane for even contemplating that God even exists, but that’s okay. We all have faith in something! By definition, faith is not just one thing. It isn’t JUST faith in God, or belief in religion. It is often belief in others, or trust in something. Do you trust that something/someone will take care of you? A doctor, or hospital? A friend or family member? Then you have faith! Even if it’s not in God, I challenge everyone to explore the possibility that faith is about more than religion. Let’s look inside ourselves and find the thing we believe in, that we trust the most. For me, it’s God and my family. They get me through those times in my life when all I feel is the pain. They make me realize that I am more than my illness. God didn’t give me the pain, He isn’t cruel! That’s a topic for another post for another time though.

Trust me when I say this… I will not get super religious on my blog. I know a lot of people that deal with their faith, and I wanted to let everyone know where I stood. I’m the opposite of judgmental! I’m not republican OR democrat, I don’t care who you vote for. I am a heterosexual woman that is an ally for the LGBTQ community, I fully support gay marriage and think its criminal how they are treated! I have tattoos and brightly colored hair. I love science-fiction movies and even cosplay at my local comic-con. So, why did I tell you all that? Because, it doesn’t matter who you are! God doesn’t care! God doesn’t love me any less because I have tattoos. My faith isn’t challenged because I liked a picture of my friend’s gay wedding. Why? Nothing you do can change the trust in that which gets you through your own personal pain.