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.

It’s All for Show

I’m allergic to make-up, but we’ll get back to that.

A couple of months ago my grandmother passed away. It was an extremely difficult time for me, as we had just started getting close. My whole life we have had a strained relationship, over-shadowed by alcoholism and brutal honesty.

Now, I loved my Grandma! A lot! Even when I couldn’t stand her, I loved her. I hate even thinking about the “bad” years. Well today we had her “celebration of life” service (we had to delay it due to some family health problems) and when I tried to think of something to say about her,  I broke down crying. In an instant, my mind flooded with all the ugly memories, and none of the good ones. All I could say was “The last few years were much better, Grandma and I had our rough times, but things had gotten better.” I was rambling through sobs. Finally I said I was sorry and there was silence for a good two minutes while people patiently anticipated another burst of mumbled words. Thankfully my brother saved the day and started talking about how he had dealt with many of the same issues, and then talked about some of the wonderful things she had done for him over the years. I was so grateful to him! Also to my precious daughter, who came over to me and hugged me tight. She could see that I needed comforting, but I knew she needed it as well. She had only really known Grandma during the “good years”, she didn’t know her as I did. She’s heard the stories, I’ve made it very clear to my kids that I’m not going to be the parent that hides the past just to make people look better than they really are. At the same time, it has never diminished how she felt about her Great-Grandmother. I have some special kids!

So, now for some back history about my relationship with my Grandma. I want to make it VERY clear (upfront) that I am not “trash talking” her! I’m not airing out dirty laundry here, nor am I trying to hurt anyone by writing this all out. I’m simply putting this all out there because I need to, for my own sanity. Because I don’t want to be fake, and right now I feel like if I don’t explain myself, I’m lying to the world.

DG (abbreviation of her name, not going to use her real name) was an alcoholic. Her husband was an alcoholic as well, but he could control it… she could not. She made it a point to always let everyone know how she felt about everything, and everyone when she was drunk. You couldn’t talk to her after 5 o’clock, because that was cocktail time, and there was just no point. They also smoked… a lot. Which made me sick to my stomach, literally. But it didn’t matter to her. Even when I started developing asthmatic symptoms and I begged her to not smoke around me, her response was (to my father, not me) “She’s going to have to get used to it, people smoke, that’s just the way of the world and she’s got to grow up.” That’s my Grandma, that is how I remember her. I HATE that I remember her that way! I don’t like those memories, I want to remember the DG that had given up drinking and smoking for the past 8 years and had turned into a completely different person because of it. The woman who started asking me (on a regular basis) how I was feeling and how my kids were. But I don’t. I remember the woman who (when we were kids and living with them for a short time) threatened to burn down our house. I remember the woman who told me when I was 13, to my face I was getting fat to “motivate” me to lose weight. I remember hiding from her while she was drunk, and standing outside in the freezing cold so I wouldn’t be around the smoke. It tears me apart! Yesterday felt like an act, a farce, an improvisation of life. I’ve done improv (my background is in theatre), but I was not prepared to act out this part. I promise, I’m going somewhere with this!

Now, was everything I said yesterday a lie? No, not at all. What I mean by all this is that I felt like it was strange to talk about her life as if she had always been this amazing, wonderful person. Everyone there seemed to focus on the last few years of her life, and whenever anyone brought up the earlier years, no one said anything negative. Not that I would expect them to, but it hit me that I do this all the time! I live my life everyday hiding behind a curtain of fake smiles. When people ask how I’m doing, I say “I’m fine” or “I’m here” because it’s easier than the truth. They don’t want to know how I really am, if I actually told them, all I would get is pity… and I just can’t handle that. I’m tired of hearing “I hope you feel better soon”, so I smile and pretend everything is fine. I don’t want to answer questions about my health, I just want to go home and take a nap (always). But that’s not how she lived her life. Even though it was one of the things that made her incredibly hard to live with, she was brutality honest. If she didn’t like something (or someone) she made it very clear. I don’t know how she would have felt about yesterday, she may have wanted me to stand up and say how I really felt. But I wasn’t strong enough.

For years I was told (by close family members) “you look so much better with make-up on, you really should wear more make-up”… only problem is that I’m allergic to it. I have a terrible allergy to all metals, especially the kinds found in make-up. I have tried every kind imaginable! Hypo-allergenic, natural, organic, expensive, cheap, you name it… I’ve tried it! Everything with pigment has metal (titanium dioxide and/or aluminum) and the VERY few that I have found that don’t are horrible and make me break out. So, if you see me wearing make-up, consider yourself lucky. I have found a way to make it myself, but only the eyeliner, mascara, and powder. The homemade eye shadow, blush, and base were flops. I only make myself up for very special occasions, and I felt yesterday was worth putting on a little bit. I should have known as soon as I started putting on the make-up what the day had in store.

I love you Grandma. I might not be able to remember them all, but I know we had some good times. You were a huge part of my life, and you taught me to be honest (and to respect honesty in others). Even though you didn’t mean to give me the gift of sobriety, you did, so thank you. I miss you, truly. I miss your smile, but I know you are much happier now that you’re with Grandpa again. Give him a huge hug and kiss for me. I love you both!

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.

Lamenting a Life Lost

To lament means to “passionately express grief or sorrow”.

I’ve had my fair share of loss; death, illness, plans for the future, and so much more. Some people believe that grieving for yourself, is the same as being selfish. Therefor it is an act that many people feel extremely guilty for doing. But I can tell you, it is one of the healthiest things you can do!

When I finally got my diagnosis, it came with pros and cons. Some of the pros included: justification of all my pain/frustration, proper treatment plans, and a focus for my own personal research. On the other hand, some of the cons were: realizing all those previous doctor visits amounted to diddly squat, having to explain exactly what said diagnosis means to every single friend or family member (often multiple times before they understand), and finally having to let go. See, we cling to this false hope that maybe it really is just all in our heads, like everyone has been telling us our whole lives. We grasp onto the notion that this pain could go away at any time, or that there’s going to be some miracle drug that will come along to cure us. But there’s not. Getting that diagnosis was my moment, and that was just the start.

Going back a bit, let’s talk about dance!

Well, ballet really. Like so many other young girls… I loved to dance, wear pink, and sing to New Kids on the Block. But unlike many others, I was an all-star ballerina. I was at the top of my class, and even got invited to join my teacher on a trip to her second home/school in France. But I was 10, and my parents thought I was too young (devestating at the time, but I have a 10 year old now and I get it). One thing that I struggled with though, was my legs. I was always getting in trouble for locking my knees. I never meant to, and I had no idea how the other girls could keep from doing it. How no one saw just how far back my knees went, and thought to wonder “is that normal?” I will never understand (look up EDS,you’ll see what I mean).  So, because of this, she refused to put me on point. Now, for someone who has spent almost every day of 10 years practicing ballet to be told “no” on a regular basis, I was getting fed up. So I started other forms of dance (on top of the ballet), like jazz and tap. I found jazz suited me (more of what would be called “modern dance” now), but I was never very good at tap. Because of my flexibility, I quickly became a leader in the class. I asked my teacher (who had been like a second mother to me for years) when she was finally going to put me on point, she said… never. It was time for a big change. Then the new semester hit and they dropped jazz. Low administration, they said, and dropping student teachers too. It was a slap in the face. She was basically telling me “you either do just ballet, or nothing at all”, so she got my answer. I was 15 years old, and that was it. Freshman in high school and already felt like such a quitter. But then the s!*t hit the fan. It’s not like I hadn’t dealt with pain up until that point, I had! I had been dealing with wrist and ankle pain for years, but I had always been told they were just growing pains, or I had attributed them to the ballet. But after I quit, after I wasn’t practicing on a daily basis, I began to feel it constantly. My metabolism also took a major hit. That is when I really “lost control” of my weight. I went from a confident young dancer, to a depressed teenage blob (in my own mind) in a matter of weeks. A few years later, I got a call that my dance troupe was having a reunion and wanted me to come dance with them one more time. I decided it would be nice to see some of the people again, and I really did miss dancing. During the practice, I was struggling to catch my breath (I know now that I have environmental asthma) and one girl commented “well, you always were the heaviest of us”, I left and never looked back. When I look at pictures of me as a kid, I was a twig.

So, why the trip down horrible memory lane? Because it reminds me that I’ve had dream after dream, one after the other that I’ve had to let go. I never really let go of my ballet dreams at the time. I stressed over it and obsessed, until the reunion when it was clear that these people were not my friends. They never cared about me. If they did, they would be trying to help me, not pulling me down. As hurtful as that was (and still is), it was the only thing that snapped me out if the mindset that maybe, someday I could still become a dancer. I would lose the weight and then some other teacher would put me on point. But it wasn’t going to happen. It sucked, no doubt about it. But that is life.

I’m tired of this mentality that says, if you believe you can do it, then do it! That’s all well and good, if you really WANT it to happen! Or if it really SHOULD happen! Think about it for a second.

Let me put it this way. I love science… love it! When other kids wanted to be teachers and doctors, I would say “I’m going to be a ballerina anthropologist” seriously, I said that. I went back and forth between Egyptology and Astronomy, both fascinate me. But here’s the thing… I am not a scientist. My dyslexic brain can’t even handle remedial math, let alone what it would take to get through higher education. Does that diminish my love of anthropology or the sciences? No way! But just because someone says “if you believe in yourself, anything is possible”, I’m not going to seriously pursue a career in it. It just doesn’t make any sense!

It’s the same with illness.

I cannot tell you how often I have people tell me just to think positive, or it all works out in the end. What does that even mean? The end of what? The world?! Because that’s when it’ll be for me, unless you can go work on a cure. As of right now, there is no cure for most forms of chronic illness. That is insane! Even Cancer (which I am in NO WAY down playing!!!! I lost two grandparents to Cancer and I know many people who have beaten it) has effective treatments that can result in remission. Where, most auto-immune disease goes undiagnosed and completely untreated. Anyway, I’m getting off topic. I’ll talk more about that some other time.

For those of us with invisible illness, lamenting our potential future selves can be very healthy. We’re not just saying what we can’t do, but what we can. We’re standing up (metaphorically) and proclaiming our new futures. A future that includes trials, but triumphs. A future that includes pain, but rest. A future that we set in motion… today.

(It’s important that I  note this. I don’t always take my own advice, and this post is just as much for me as it is for everyone else. I still have my moments where I feel guilty for feeling the way I do, but my future is looking bright.)

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!)

Kristie’s Story- Why there has to be a change in policy!

I’d like to introduce you to a woman named Kristie. Now for privacy, HIPAA, and general courtesy I will refrain from using her full name. Kristie’s story is far too common and serves as a testament to our increasing need for change. Unfortunately, the change we’ve seen lately has taken a dramatic turn in the opposite direction for those with chronic pain. The current debate over opiates and their availability, has significantly affected those with chronic pain/illness. While many people honestly believe it is a ploy to gain access to drugs, most pain patients are dependent on these medications to simply make it through the day outside of their beds. But let’s get back to Kristie’s story.

A few days ago, Kristie had to pick up a prescription from her local pharmacy. As with all controlled substance scripts, she did as she always had done… went to the same place to fill it. But when that place did not have what she needed, they recommended she go to a different pharmacy nearby (so she wouldn’t have to wait the 2-3 days it would take for them to get the rest of it in, because they knew she needed it right away and would have had to get a ride). When she arrived at the other pharmacy (due to legality, we’ll call it “Wally’s”), when she got to Wally’s she sat and waited for almost 40 minutes before she was called back by the pharmacist. This is where the story takes a very dark turn. You see, at many pharmacies, it is a common practice to screen for “red flags” on medications. If someone is filling a script that is usually filled elsewhere, the pharmacist can refuse to fill it. Just out-right refuse. Or if you’re filling it one day before you “should” because you’re going to be out-of-town and can’t fill it after a certain time. They can refuse to fill it at all. Pharmacists have total control over what medications we can and cannot take, even without consulting your doctor. Kristie found this out the hard way. The pharmacist at Wally’s berated her (in front of other customers in line, violating HIPAA laws) and accused her of attempting to fill the script at multiple pharmacies.  

Here’s an excerpt from Kristie’s first post- 

[“You are not consistent. You can’t do what you’re doing. I will not sign off on this type of behavior”. I explained to her that I always go to ——– for all my prescriptions but they did not have enough to fill it and told me to come here since it was the closest place (they are my pharmacy and know me well so they also know I can’t drive and were trying to make it a quick trip for me). She looked at me and said “Nope” and shook her head. Umm… ok, I think to myself. I honestly was dumbfounded and felt the tears streaming down my face, thinking great the tears are making it worse because I look desperate so I turned away and wiped my face. Mind you there’s a whole line of people watching all of this. She picked my filled bottle of meds up and showed me and said “You’re not getting these from me today”. I asked for my prescription back and she goes “well I guess you can try somewhere else. You’re use to it anyway”. And very slowly handed it to me.]

After that she went back to her original pharmacy and explained what happened, they were disgusted (as they should have been). With sincere apologies, they filled as much of the script as they could, with a promise to call when the rest came in. But the damage was done. Kristie had been made to feel like a criminal for something she had zero control over. Her doctor wrote her a prescription, and when she went to fill it, an over-zealous pharmacist took it upon herself to play judge and jury. 

The out-pouring of support on social sites for Kristie’s story has been incredible! Many even took to the “Wally” Facebook, Twitter, and Yelp sites to confront the mega-chain and demand something be done. Kristie herself has been over-whelmed by the attention her post caused, but it has also given her a new goal in life. The hashtag #patientsnotaddicts, has been around for a while, but is just now gaining momentum because of the newest ruling on opiates. Kristie is the newest to pick up the torch for their cause and I’m standing beside her as well. 

While reading through many of the comments on her post, it amazed me just how many people had similar experiences. I myself have had something very close, where I was accused of trying to fill the same script twice. But it turned out to be a mistake on the pharmacies end. Just that one gut wrenching moment when someone looks at you like a criminal can be devastating! To have someone loudly proclaim it for other customers to hear, should be considered reckless and slanderous. This person should be held accountable and brought to justice. We are patients, not addicts!

Not everyone who takes opiates is a drug addict, seriously. Most people are not! I’m not saying that there are people who do not abuse them, obviously there are. But if the doctor wrote a prescription, there’s obviously a reason. Let’s rally behind Kristie and the #patientsnotaddicts cause to stop discrimination against people who NEED these medications. 

Thank you!

 

The Blind Eating the Blind

This post may be about food allergies, but it isn’t just for people with them. This is a post that is mean to educate and enlighten. I certainly hope so, at least.

     Food Allergies SUCK! Seriously, it’s a crappy hand that’s dealt and there’s nothing anyone can do to fix it (oh, and please don’t start in with some “just try this miracle cure that reversed my food allergy” bull… not in my house, honey). There are the “big” ones; like peanuts, shellfish, etc. Down to food sensitivities; where you CAN still eat it, but you’ll pay for it later. All of these are serious and have validation!

     When I was told that I potentially had food allergies, I wasn’t surprised. I have severe environmental allergies, and unexplainable rashes on my arms. The testing was grueling, and truly awful. Weeks of injections, then disappointment. Because every time I went in I would find out another food I couldn’t (or shouldn’t) eat any more. Just that experience was devastating, but it was nothing compared to the years to come.

     Let me as you this… have you ever been on a diet, then suddenly you find yourself in front of a buffet table or pitch-in? All your favorite foods are spread out in front of you, but you know you shouldn’t eat it. Well, what if eating those things (that you have loved for so long) could now put you in the hospital? For example: let’s say you have discovered you have a dairy allergy, and while you’re at that same buffet you can’t help but stare at the mac-n-cheese. A friend walks up and says “You have got to try this! I cannot stop eat it!” You politely decline and explain that you are allergic to cheese. They gasp, and exclaim “Oh my gosh! If I couldn’t eat cheese I would die! Seriously, just shrivel up and die!” You can feel the rage boil up inside you as you want to scream “Is that what you think I should do? DIE because I can’t eat CHEESE anymore?!” But you suppress your anger, because you’ve heard this a hundred times (really, I’ve heard this over and over again… I’m not exaggerating). They just don’t get it, and they never will. So you leave the party to go and find somewhere with you can food you can eat, again.

     For me (and I’m sure many others), the worst part is the distance it puts between myself and those around me. It may seem like a ridiculous notion that a “silly thing” like food allergies could cause arguments, but they do (especially among family). When the topic of get-togethers comes up, I’m either an after-thought or an inconvenience. Sometimes my allergies aren’t even considered at all and I have to go out to get my own food. Yes, I could just always bring my own food with me and avoid this. What people need to realize is that this can become VERY isolating and old… quick! Then to be asked what I’m allergic to on a regular basis, even though I have had these allergies for year can be like a stab in the gut every time. Or to be handed a food I can’t eat (especially if it was one I used to be able to, and loved). Whenever someone hands me a piece of birthday cake or a cookie, a little piece of me breaks… every single time.

     Here’s an analogy…

(disclaimer- I am in NO WAY saying that food allergies and being blind are the same! It is a simple analogy, we cool?)

     A man in his twenties finds out his eye sight is progressively getting worse. Then one day his eye doctor tells him that he is going blind. After multiple tests, they determine there’s nothing that can be done and all he can see are some shapes (but even those are very blurry). So he becomes totally dependent on a walking stick to get around. After a time, he is determined to start living his life again and ventures out to a night club he used to frequent. There an old friend spotted him and called him over. Upon seeing the walking stick, she gets flustered and asked what had happened. After he explained, she said in astonishment… “You’re amazing, man! I don’t know what I would do if I couldn’t see!!! I think I would eat one, if you know what I mean. For real, I just cannot imagine!” The blind man was deeply hurt. He knew she was just saying how she really felt. She was an artist and her eyesight meant the world to her, but the statement still stung. All he could do was shrug it off, it had been too long since he had been out with a friend. So he smiled and enjoyed the rest of his evening. The next week he went to his parent’s house for Easter brunch. Upon walking into the house he heard his niece and nephew playing. His mother came up, hugged him and said… “Just look at those two! Don’t they look adorable today?” It was hard to keep the pained look from showing on his face, and she apologized as soon as she saw it. “Oh, sweetie, I’m so sorry! Bear with me, okay? This is going to take some getting used to.” He forced a smile and said… “I know, mom. Better than anyone.” After a few years he had gotten very good at making his way around. There was still the occasional stubbed toe here and there. Even a very risky attempt at using the stove-top, that ended in an ER visit and a gnarly scar. But overall the biggest problem was people. He had been blind for quite a while now, yet he was constantly told to “look at this” or some variation thereof. When it was someone he didn’t know well, it wasn’t as bad. But when it was I close friend of family member the hole just dug deeper each time. It wasn’t even the words they said that got to him, it was the fact that it kept happening. The stress of it had torn a rift between him and his friends/family. Sometimes is wasn’t even what they said, just how they acted around him. Or in attempts to be nice, they just alienated him even more! A friends invited him to an art class (the kind for adults, with wine), which would have been very fun… five years ago. His brother invited him to join his family for Fourth of July fireworks, but all they do is give him migraines (the fireworks, not the kids). His parents tried to include him in family gatherings as well, he knew that. But no matter what, the subject always turned to what he couldn’t do, not what he could. One day his brother called and got on his case… “I just got off the phone with mom and she’s in tears because of you!” He was dumbfounded. “What did I do?” He said. His brother continued… “She called to tell me that you’re upset because other people are always doing things you can’t do. Well guess what, we are allowed to have a life too. Don’t make her, or anyone else feel bad for that!” This was the last straw. He gathered all his strength and said… “Look I NEVER said anyone couldn’t go out and do whatever that want! I’m sorry I vented to mom. She asked what was wrong, so I told her. It won’t happen again. But you have to understand that inviting me to go sightseeing, is just like giving someone that you know is allergic to eggs, a piece of cake.”

     Please don’t treat your friends or family like an inconvenience. Don’t ever let them feel like their health doesn’t matter. If it means going out of your way, do it. Research their allergies, add them into the contact information on your phone (so you won’t ever forget what they are), know what you can or cannot feed them so they feel safe in your home. This goes double when there are kids with allergies! Doing this could (literally) save their life.

The Drinking Game

Hi my name is Erin, and I don’t drink.

There was a time that saying that would make people look at me like I had said I had never seen a tree! Those wide eyed stares used to drive me crazy, now I just shrug them off and remember why I don’t consume alcohol.

Growing up I never had that intense desire to start drinking (as SO many other people I knew did). I got my fair share of teasing for it, but I also had my reasons. You see, my family had a history of alcoholism and as a child I saw how it affected those around me. I also had a friend in high school that died in a drinking and driving accident (she was the one driving). Add to these the fact that I could not stand the smell of it! Whenever I went to my Grandparents house, it hit my nose and turned my stomach. As I got older I knew the last thing I wanted was to drink (this really is going somewhere).

If you’ve already read my story (on the blog post The Spot – My Story), you know all about my physical conditions, but I’ll give you just a very quick reminder. As a child I had unexplainable pain, but it was “blown off” by doctors as growing pains and hypochondria. The older I got the pain got worse, and so did my frustration. I was always sick and no doctor could give me an explanation. It took to my late 20’s for a family physician to finally give me a diagnosis of Fibromyalgia (which I had known for a while, but no one believed me). This started me on the road to years of continued struggles to finding out what else was going on, because I knew that wasn’t the only thing. Turned out I had multiple food allergies, scoliosis, IBS, migraines, depression, chronic fatigue syndrome, hypermobility (Ehlers-Danlos), and just now I’m starting treatment for possible Lupus. There are a few more things, but you get the point. The reason I bring all this up (you see, I told you I was going somewhere with all this) is because now I CAN’T drink!

With all the medication I am on for the multitude of conditions I am being treated for, there’s no way I can have any alcohol. There’s a reason those pill bottles say “Do Not Take with Alcohol”. So, after years of feeling no desire to drink, at all. I suddenly want nothing more! I find so many parallels between this and other parts of my life, so I’m sure others will as well. So, this is my question…

Are there any parts of your life, that when you realize can’t fully control it, your perception shifts?

It took me a long time to come to with the fact that I was a control freak. I wanted total control over what was going on with my body, and what I could (and could not) do. The fact that could no longer drink at all, just made me want to drink for the first time in my life. What sense did that make? It made me really step back and look at what was motivating me, also what other parts of my life I had to examine. Unfortunately, there were a lot. I had to let go of my addiction to caffeine, as it is a pain stimulant. I had to let go of my stubborn grasp on certain toxic friendships. I had to stop fooling myself into believing I could participate in the same activities I used to, like performing (this was the hardest of them all). But by letting go of the “control” I held on to for so long, I found a freedom that made things much clearer.

Are things perfect now? No, not by a long shot. But, day by day I am learning to recognize my limits. Even though I still wish I could drink. 😉

From Us to You- a message to friends and family

Being diagnosed with multiple medical/pain/auto-immune conditions has changed my life in so many ways, I cannot possibly even begin to describe them all. One of the hardest parts has been gaining acceptance from those around me (acceptance for my conditions… not me), because they knew me before I was “sick”. But the truth is that I’ve always been sick, it’s just that my symptoms were not as bad and have gotten progressively worse as I’ve gotten older. I look back at my childhood and it is so obvious to me that I can’t imagine how any doctor could not have seen it, but I know better than to play the “what if” game. Some people do their best to be supportive, I know that. It can be practically impossible for someone who doesn’t go through this pain to understand the toll that sort of “support” can take on a person. Thus, this letter to the world. It’s not directed at any one person… REALLY! There are going to be some people that will assume I’m pointing fingers, but I’m here to assure you that you’re not the only one that does it! Let’s break it down by the type of supporters those of us with chronic illness often see.      

          • The Doubting Thomas – No matter HOW many articles you post, or how many times you’ve explained your condition, there’s that one person that thinks it’s all just environmental (or some other excuse) and doesn’t think anything is really wrong with you. They’re not being supportive, at all. They think they’re being positive, but all it does is eat away at your already hurting emotions. Don’t. Let Them.

           • The Health Nut – They always have a new recipe or vitamin to suggest, or even give to you in some cases. They tell you that all your problems would be solved if you would just exercise, and they’ll even recommend this/that to get you started. What       they may not realize is that, if it actually helped you… you would try it! You REALLY would! But you have a doctor for a reason, multiple doctors! You know you need to work-out more, obviously. You also need to eat better (who doesn’t), but if drinking a shake cured ________ it would be front page news, for real. So, if my doctor wants me to do anything besides what I’m already doing (which YES includes working out, when I am physically able to), I will do that.

           • The Prayer Warrior – No matter what your belief is on prayer, I don’t know of anyone that turns it down. With that being said, for many people it is the “go to”   answer for everything. (On a personal note- I pray, all the time. That doesn’t mean     this is any more or less important to me.) When people are in constant pain or sick    ALL the TIME, it may seem like a comfort to say “I’m praying for you”. After a while it gets VERY old! Thank you for praying, really. But I honestly don’t need the constant      reminder that nothing is happening to change my situation. Obviously this is no one’s intention, and for those doing the praying, please keep it up (we need all we can get). There comes a point when even the most devout among us begin to doubt, and having those reminders staring us in the face can push us over the edge. For those that struggle with faith or do not believe, it can be like a knife that cuts deep. Every time.

           • The Grass is Always Ugly – Some people have a tendency to point out how much worse everyone else’s life is. If you complain (about anything at all), they bring up some world event that “brings everything into perspective”. It’s true, our lives could be worse! But it does NOT devalue our pain! You are important and so is what you    are going through! We are not in a contest with the rest of the world to find out who is having the worst the day. Because, guess what? No one wins! If a friend doesn’t allow you to vent or explain your pain without comparing it to something else, they don’t really understand what you’re going through and need more information.

           • The Amateur MD – The opposite of the doubting Thomas, this is the friend/family member that won’t stop sending you articles/stories about people with your illness. They’ll ask “have you asked your doctor about this medication?” or “what has your doctor said about this/that?” and so on. Obviously this person means well! And of all the supporters so far, they are trying the hardest to truly be there for us. But please stop! This is not the way to do it. Most of the time people with chronic illness spend a    LOT of time on-line researching their condition, it’s one of the things that helps (sometimes) before office visits, etc. So it’s very rare that there’s anything anyone can show us that we don’t already know about. Plus, asking us if our doctor is doing something for us is just questioning our doctor’s competency, that’s our job.

           • The Tried & True – The people who are there, no matter what. Through thick and thin, hell or high water. They don’t care how much you complain, they’ll listen (and will probably vent about something as well). These are probably people who have been friends for years and have seen you at your worst. They know what your pain has done to you, and don’t care if it means you can’t spend as much time with them    anymore. Be very careful!!!! As much as you may lean on this friend, if they are your ONLY means of venting, it can eventually weigh heavy on anyone. Ask them how   they’re doing on a regular basis, it can be really easy for people with a serious illness to forget to do this!

           • The On-Line Support – Thanks to social media we now have a whole (literal) world of support available to us. This can be an amazing comfort for some, and extremely lonely for others. Whether you’re on-line for information, or to make friends, these groups are a great way to connect with others in similar situations to your own (and highly recommended). Invite family members and friends, get them involved!

           • The Jekyll & Hyde – Not everyone you know will belong to just one of these lists. Many people will actually be on several of them! But if as you were reading this, you were thinking of someone/anyone… this is worth sharing.  

In conclusion, I would like to speak directly to the friends and family reading this. All we want is support. This doesn’t mean advice, it doesn’t mean doubt, or someone behind us (pushing us to do or be better). We need someone to tell us they’re there for us. Someone to say everything is going to be, even if we all know it isn’t. Someone that will allow me to cry, and feel free to cry with me. Someone who won’t judge me if I have to cancel our plans, because it’s going to happen… a lot. Someone to love me, no matter what.

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.