Becomming A Liar ?

Anyone who knows me knows I’m an absolutely terrible liar. I have an ‘outloud’ face and am usually unable to maintain eye contact. I’m horrble with surprises if someone asks me a direct question. I give the truth away no matter how hard I try.

However, over the past four years I’ve nearly perfected the art of lying. Not because that was my goal, mind you, but out of necessity and survival. I was diagnosed with CRPS about 4 years ago and my life literally got dumped upside down. The healthy, very active, I’ll sleep when I’m dead, OCD, clean freak, go go go person that I was quickly came to a halt. Denial was my first response. Ignore it and maybe it will go away. Yeah, not so much! Soon I was on one pain pill and then another and then this med and that med until at one point I was on 15 different pills at the same time. I had to quit my job. I’ve held a job since I was 14 years old…….not working was ……weird, and defeating. Nothing like not being able to provide for yourself and your children to make you feel worthless. I spent 90% of my time in bed. I had a sleep study done that showed the intense pain I was in would keep me from sleeping and reaching REM sleep. Let me just say it’s hard, no impossible, to recover any energy when you can’t rest. I missed out on hanging out with my friends and my kids and all the fun that goes along with all of that. Then, I spent all day and sleepless nights thinking how worthless and useless my life had become. How I was nothing but a burden to my family. As a stubborn ass woman who has dealt with more crap than I care to mention and yet refused to let any of it keep me down, that was a rough place to be in. Countless times I wished I would just go to sleep and not wake up. 

Relationships dwindled, except for those few that actually researched my disease and tried to understand that me missing or cancelling last minute wasn’t about them, it was my disease. At first I tried my best to educate myself, my family and my friends when they asked questions. I found that most of the time it went in one ear and out the other with most people. Hearing things like ‘well I hope you feel better soon’ or  ‘ you just have to suck it up and push forward’ was growing exhausting. REALLY?! No shit I would love to magically feel better one day! But it doesn’t work like that! And I can’t even begin to explain how much pain I suck up on a daily basis just to be able to get out of bed. Have you not met me? Do I not always suck it up?! 

Finally the anger was just too much. I was sick to death of trying to explain to those that didn’t have enough common decency or respect for me, to even bother to grasp the basics of what I was dealing with. Don’t get me wrong, I didn’t and don’t expect people to know as much as I do. I live it and have to know, sometimes more than even the doctors I see. Basic knowledge would be nice though. Instead I’ve been alienated by some I never thought would do such a thing. Guess they didn’t get the memo that I’M the one dealing with 24/7 pain….NOT them. 

So, I stopped trying to get people to understand. I joined a support group online and relied on my couple very close friends/family to vent my frustrations to. For everyone else, I put on a smile and when asked how I was I said ‘fine.’ I’m quite the pro at it these days if I don’t say so myself! I can plaster a huge smile on my face and act like I am good to go. There are a couple people in my life that can take one look at me and know I’m lying….but for the most part I think I’m quite convincing. I’ve been working hard at it for a few years now. Now I’m fine, always late and unable to make solid commitments to plans….but hey, as long as everyone else is comfortable, right? 

I was literally one in a million and was lucky enough to go into remission in January of this year after a second hip surgery. Had I known that, I might have stayed on my pain pill cocktail for another year……..saving me a horrible withdrawl process and months of med free pain. Now remission for CRPS isn’t like remission for other things. Remission for me means that my normal daily pain is at a 4 instead of an 8 or 9. Not gone, just less…….until I have a flare…..which happens with any barometric changes, overstimulation of my left arm or leg or too loud of music or lights ……really just about anything. hahahha

CRPS Is an asshole. Plain and simple, it’s an asshole. People around you become assholes because they think your pain is an inconvenience to them. News flash……..NOPE! It’s all very exhausting. I’m not a fan of drama and theatrics and I wasn’t born with enough patience to deal with assholes. That is where the lying has come in. Instead of getting pissed or sad by the stink eye, hushed talking, or just straight blatant disrespect and talking crap behind my back ……I decided it’s not my job to keep setting people in my life straight with facts anymore. They can Google! I will just smile and say I’m fine and let you believe it. In turn, my stress is decreased and I feel much better because of it. 

I started a journey about 9 weeks ago that was just for me. That isn’t anything I’ve ever done before. Being a young, single mom for many years didn’t leave me much me time. I’m working out 6 days a week, Im eating the right foods 6 times a day (that took a bit to be able to do), cut out all alcohol, and have literally the most positive, supportive and encouraging bunch of people surrounding me. It couldn’t have come at a better time. Yet even here, I’m a liar. I show up everyday no mattter what, put a smile on my face, and give everything I have every single time! I lie to myself to keep me going. Crazy thing is….I do. I guess all lying isn’t bad. (Don’t tell my kids hahaha) Maybe it’s been more of a fake it until you make it situation than a lie. 

I’ve had plantar fasciitis in my left heel going on for 12 weeks now and my left side is what is affected most by CRPS. I’m afraid everytime I jump on that foot that I will throw myself right out of remission. I lie and tell myself that isn’t going to happen today. I fear that as the weather gets colder and colder that exposing my limbs to the severe weather will throw me out of remission. I bundle up and lie and tell myself to suck it up. Everytime I wake up in severe pain (again,thanks alot winter…you suck) I lie and tell myself it’s not that bad. For the most part these lies work…..so far. CRPS likes to sneak up and remind you that you are not in control. It is. However, in the midst of all these lies, I have gotten stronger and healthier and happier and have slowly taken some control back. Now, I could go on for days about Ferrells and how it’s changed my life in the last 9 weeks. How amazing every single person that attends Ferrells is. How my amazing cousins inspired me and continue to be my  accountabilibuddies. How having a truly non judgemental, totally accepting and encouraging environment is what has allowed me to keep pushing forward. That will definitely be an article for another day! Ferrells may have quite literally helped to save my life. 

So…..I’ve become a liar. What of it? I saved a whole lot of hurt feelings, my feelings. I save the frustration of repeating myself 9,000 times to people who aren’t really listening to me anyways. I save the anger I have for the heavy bag. I gained strength and determination and a phenomenal support system. I also gained 40lbs in 3 years thanks to this damn disease. I’m probably lying….it was probably more. I’m also working on that, quite successfully if I dont say so myself. Mostly, I’ve taken some of my life back. 

Turns out, if I’m going to be a liar, I guess becoming that kind of liar isn’t too bad. But please, don’t go asking me questions you aren’t prepared to hear the answer to! 

#thestruggleisreal

The struggle with chronic pain is far more real than most people will ever understand. I am ok with that. I wish that more and more people would never have to endure this living hell. Fact is, unless you are experiencing it yourself or something extremely similar, you can’t possibly understand what it is like to live with chronic pain with every single breath you take. Chronic pain sufferers are twice as likely to take their own life than those without pain. Don’t confuse this with depression, because if you add chronic pain patients who also have depression, that number skyrockets. I’m talking about those people who logically decide that they can no longer live in tormenting pain. That they don’t want to be a burden on those around them anymore. The person that can’t keep up, doesn’t have enough energy, can’t do enough, can’t work, can’t help out enough anymore, and no longer has a purpose.

Pain starts out as obnoxious. That loud toy your sister bought your child that never seems to run out of batteries. Sirens whaling, lights flashing, beep, beep, beeping non stop and just when it shuts up, you step on it! Unlike chronic pain, the toy will eventually run out of juice and give you some peace. Most people can handle obnoxious for a little while. We learn to block it out for short periods of time, like putting the toy in the bottom of the toy box. You can still hear it, but it’s muffled and manageable. Subconsciously thinking that one day those batteries will die and we will get some peace and quiet, we are nieve and almost positive. We think one day we will finally get a break from the never-ending pain. For chronic pain sufferers like myself, pain pills are like the toy box in the beginning. They dull the noise of the pain. It doesn’t take it away. It is still there beeping away and when you aren’t looking it’s inevitable that the toy box has been dumped over so you end up stepping on it when you least expected it. You see, pain likes to give big reminders that you are not in control.

You can deal with a whole lot more of obnoxious than you ever thought possible. It’s true…..at first. However, it doesn’t stay there. Chronic Pain learns quickly that it can be quieted from time to time and it doesn’t like that at all, so it starts to step up its game. It begins to adapt and adjust. It learns to push through strong pain medications. So you go back to your doctor and they give you more or something stronger or different in order to confuse the pain or attempt to slow it down. Sometimes that works……for a bit. You see, chronic pain is adaptive…constantly revising. It learns and moves and changes and intensifies,  becoming insufferable. You try everything and anything you can think of. I did. Chiropractic, Acupuncture, Meditation, Diet Changes, Cognitive Behavior Modification, Massage Therapy, Natural Remedies (legal and not), too many medications to list…seriously, you name it….I have tried it!!

Then you get to deal with all the politics of chronic pain and all that entails. I won’t bore you with all the details. But the gist of it is…..med regulation…..and not in a good way. I’m a tough case, I’m allergic to a ton of meds and the rest I have massive side effects. Needless to say, I don’t do well with modern medicine. Here’s the deal……I’m voluntarily coming off pain meds and yet at my last visit, after telling my doc I had enough pills left to wean me the rest of the way off my methadone and he didn’t need to write me another script……he said, “I will write it for 60 more and then I need to do a drug test on you to make sure you aren’t selling your pills.”

Go ahead……read it again……..yeah…..he said that!

I’m NOT a FRICKEN CRIMINAL!!!! If I were selling my prescription pills, I could afford to pay off my medical bills and I wouldn’t be in pain and wanting to just go to sleep and not wake up anymore!! Now would I?!! Who treats people like this? As if we don’t have enough to deal with. Being off pain meds is heinous. It’s worse than in the beginning with the obnoxious toy because the pain has already adapted and intensified and spread, but now there isn’t anything at all to help quiet the noise. Instead of being able to talk to my doctor about any other options that he might possibly know of that maybe I haven’t tried by chance. I didn’t get that option because of the drug seekers out there ruining proper medical care for chronic pain patients. I have a nerve disease called CRPS. It’s one of the most painful diseases on the McGill Pain Scale and yet I can’t seem to get any relief from this pain. The one person who was supposed to help has let me down. Pain meds have made me gain weight, lose friends , lose trust in those I used to depend on, changed some of the people around me into people I don’t recognize anymore, and left me feeling very alone most of the time and all because of something I have absolutely no control over. If I had one ounce of control, I guarantee you it would al look very different. I would get my life back!

Bit by bit you become a fragment of the person you used to be and you realize you will never be the person you wanted to be. Your dreams died the day Chronic Pain moved in. The most miniscule tasks take almost all of your daily energy. I have found it’s very difficult to explain to healthy people what it’s like to do something as simple as get out of bed when you have CRPS. All I can think of is imagine the most excruciating physical pain you have ever experienced in your life……now add on top of that the worst loss you have ever experienced in your life…..now imagine those two things at the height of their intensity happening at the same time……and then ……..it will NEVER end! No matter what you do, what you say, what you take, what you change, how hard you pray, how much you barter, beg, deny or try to use your stubbornness to will it away……IT NEVER STOPS……not even when you are sleeping.

Then there is the guilt. Have you done enough? Is there anything else? Can you handle one more thing? Are you putting too much stress on your family? When is enough enough?  When is the time to figure out how to make sure everyone is taken care of. Who will take care of your little fur-baby the way you have? Who will look out for your children the way you have even though they are almost all grown? All questions that need to be answered, and more if you decide you can’t live in this pain anymore. Wishing for a few good days so you can tie up loose ends, go through clutter, write a few letters, make arrangements. If you can do all of that and more, will it be enough? Will people understand? Or will they continue to see you in the same inconvenient light they see you in now?

Sound a little detached and methodical? I imagine that this might be the place that some people come to before deciding to check out. Depression is usually an emotionally based decision-making process. I think when it comes to chronic pain, the decision-making process becomes a different entity altogether. It becomes logical, thought out, and meant to keep future burden on loved ones to a minimum. I’ve considered it myself, probably more so recently than ever before. I’m not sad or depressed. I just can’t take much more of this unrelenting pain. There is NO cure. There is NO remission. There is NO hope for relief. Those are the facts. There is very little joy left in my life because it is constantly being tainted by the never-ending pain. Those smiles and laughs you see on those of us with chronic pain…….that’s the lie. It’s the lie we tell you all to try to make you feel better. Ironic isn’t it? We are living in a personal hell every second of our lives and yet we want you to be ok.

But you would miss out on so much of life!! Right? Yeah, I know. We all know. We know al too well because we are already siting on the sidelines, unable to participate in 90% of our own lives. What would I miss? ……. besides the obvious of my amazing family and friends and my sweet little fur babies and watching their futures unfold……I’m not going to talk about them. Not enough internet for that. Trust me. Keeping it light, I would miss laughing while watching The Ellen show everyday. Ahhh Ellen…..if only there was something she could do. She seems to make a lot of people’s dreams come true. But alas, mine isn’t possible. What will happen on The Walking Dead and American Horror Story Hotel. Yeah, I watch a lot of tv these days. It’s all I can do while I lie here in severe pain, crying, all alone with my sweet pups….they never judge me, they just lick away the tears and cuddle up as close as they can. I don’t believe in a heaven or a God really. Fairy Tales for adults if you ask me. But life is energy and energy doesn’t end, so I don’t know what happens to our energy after it leaves our bodies. Maybe I will still be able to catch up on my shows and keep an eye on my kids, family, friends and fur-babies.

I’m not making light of suicide, don’t misunderstand. Actually, I make light of most everything. You have to when you live every single second of your life in agonizing pain. I am merely explaining a point of view that maybe you didn’t consider before. There are always two sides to every story, right? Well, this is just a peek into a second side. Maybe it will make you think twice before judging someone before knowing their pain. Maybe it will make you think twice before withholding a med. Maybe it will make you think twice about selfish versus selflessness. Maybe, above all, it will just make you think.

Ultimately it becomes about what someone can’t handle anymore. It’s not about all the people and things they love. If it were that simple, no one would ever leave. Some things are just bigger than all the good. I wish it were different. I guess I just understand why those with chronic pain are twice as likely to choose to not burden the world anymore. I wish I didn’t, but I do.

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If you or someone you know is struggling with depression, substance abuse or mental heath issues please contact SAMHSA National Helpline 1-800-662-HELP (4357)

confidential, free, 24 hour a day, 365 day a year, information service, in English and Spanish, for individuals and family members facing mental health and/or substance use disorders.

http://www.samhsa.gov

It Doesn’t Go Unnoticed

It is very easy to get lost in your disease. One minute you are living life, happy and healthy and having the time of your life. Even if you have stressful situations, it’s all a wash when you are healthy. You have the energy to get through it. You have the confidence that it will work out eventually. You have hope. When your life is struck by disease, you lose that hope very quickly. I can only think that maybe one day I will get that back.

In the meantime everything is so much harder than you can ever imagine. I hear people say they did ‘nothing’ today. Well, my nothing means I woke up and didn’t completely fall apart or die today. Some days that is all I can do. And sadly, sometimes those days turn into weeks.

Everything in my life has completely changed into some unrecognizable version of what once was. Relationships are different, or gone or forever changed. Some people don’t get it. I really think that’s because those people are too selfish and lazy to do the minimal basic research or….oh I don’t know….ASK ME A FRICKEN QUESTION OR TWO!! Instead they sit there and judge me, talking behind my back thinking that I don’t know what they have said. Well, I know. I know everything. The only reason I don’t waste my time confronting those people is because they aren’t worth me wasting that precious energy on them! I would rather save my spoons for the people who actually get it. The ones who give a shit. The ones who ask me about my day and listen. And most importantly, to my hubby, who has really gone above and beyond and I just want him to know it doesn’t go unnoticed.

Last week was probably one of the worst weeks I have had since last winter. I don’t exactly know why. No recent med adjustments, no crazy weather patterns (well anymore than usual for stupid Nebraska lol), no family stressors or life changes…..just a bad week. That happens when you are in pain 24/7. Sometimes you just run out of fake smiles and the ability to push through. I know I am in a full-blown depression and I’ m not a fan of it at all. I’m not a depressed person in general. I’m very much a ‘It Is What It Is’ kind of person who has her flip out moments and then moves forward. Lately I can’t seem to gain traction. Anti depressants are out of the question for me as I have either an allergic reaction or adverse reaction to every single one of them. That’s never good when you get to a point you might need them. Ah well, such is my life. Nothing has ever been easy.

My hubby goes to work everyday, comes home, makes dinner, does the yard work, the laundry, the grocery shopping, the pet care, etc…..you name it, he does it. He does it without a single word of complaint, ever! He doesn’t once ask me why I didn’t do something or couldn’t have gotten this done or that done, or why I haven’t been out of bed all day. Not once has he ever given me any bit of grief at all for any of that. It doesn’t go unnoticed. Thank you for never judging my limitations.

Now, some of you might be saying that he should be doing all that and he shouldn’t give me any grief because I can’t help this damn disease and I’m doing everything I can. We are married and that is in our vows after all. Yes, on some level that is right. But on another level, he is just a human too and just because he doesn’t suffer from CRPS, doesn’t mean that his fatigue or his problems or his ailments aren’t important.

He vents to me about work and I listen and give advice when I can. I appreciate that he still see’s me as his partner and shares his day with me and values my opinion. I’m thankful he doesn’t keep it all away from me in an attempt to shelter me from dealing with one more thing. Because quite honestly, not talking to me about his day, good or bad, would make me feel even more isolated than I already do. It doesn’t go unnoticed, and I want to say thank you for treating me like your friend.

Financially we are barely making it month by month, and not once does he make comments about how I am unable to work. He never makes me feel like I should be just ‘sucking it up’ and working to have a paycheck. He knows I have worked since I was 14 and not working and taking care of myself is a huge hit to my self-confidence. He knows that I am the furthest thing froma lazy person and if I could do somethig, anything, I would. It doesn’t go unnoticed that you support me in every way and never make me feel guilty about it.

I have the best intentions to be social. We used to literally be the party. Annual Halloween parties at the Smith house, birthday parties for everyone, random it’s Friday parties and Thank God Winter Might Be Over Parties, along with meeting up with friends and family at their houses or various outings at the drop of a hat. Taking the niece and nephew as often and for as long as possibly allowed by the sis and bro in law, lol. I was always a fly by the seat of my pants kind of person and the hubby complimented that well because he was up for whatever I would drag him to. Now, I think people forget to keep inviting us, or maybe just me because my intentions are good, but sometimes, very last-minute, I can’t go. My hubby never makes me feel bad about cancelling or not being able to do something we had planned even after we are both all dressed and ready to go. It doesn’t go unnoticed. Thank you for always standing by my side even when there was something more fun going on. Thank you for going to certain things when I tell you it’s ok. It doesn’t go unnoticed that you listen to what I am really saying to you.

We aren’t perfect. We used to be. Ask anyone, lol. But this disease really flipped our lives upside down. Not just mine, but his too. He didn’t deal with it the best and made a big mistake. It’s hard to work on building that small break in trust back up when one of you is sick all the time. No cheating or anything, cuz I don’t care if I’m on my death bed, that’s a deal breaker!! Something that normally would have been a simple miscommunication and quickly solved turned into a small circus because of this stupid disease and the impact it’s made on our lives.  It doesn’t go unnoticed that you are doing everything you can and then some. Thank you for being a true stand up man. There are very few of you left in the world.

It doesn’t go unnoticed how hard you work, how much you do for me and our family, and our furbabies too. It doesn’t go unnoticed that you can always pick me up when I’m at my lowest. It doesn’t go unnoticed that you are one of the strongest persons I know because you have to be in order to be with such a strong and normally outgoing and outspoken person like me. I love that you don’t act like some macho cave man. That isn’t attractive! The strenght you show is a thousand times better and far more appreciated in every way by me evryday of our lives.

I just wanted to let my hubby know that in all this mess and chaos that has become our lives because of CRPS and this long, seemingly endless journey to find relief, you and everything you do and evrything you are doesn’t go unnoticed.

Thank you for being strong when I am weak. Funny when I am sad. Confident when I am broken. My light when I’m lost in the dark. making me feel good when I feel horrible about myself. Most of all, for being my partner through it all. I love you and appreciate you more than you will ever know.

I’m Disabled Not Incompetent

Being diagnosed with CRPS has not been the highlight of my life, that’s for sure. Quite frankly I am more aggrivated by it than I am any other single thing in my life. Course, being treated as if I were a second class citizen is becoming a close tie in that race. Sad part is, it doesn’t matter if it is by strangers or people I know, either way, it is infuriating.

Some of the behaviors I experience from others I am still chalking off to the bullshit shenanigans of a past ……welll…….bunch of crap. You would think that over a year later people would have pulled their heads out of their proverbial asses by now and learned how to act like functional adults, but alas that would be asking too much. Some have, and that has been nice. However, the fake smiles while acting as if I am completely invisible while I am SITTING RIGHT THERE is still one of my faves. Yes, yes, that was sarcasm. Good lord…..is there a 5 year plan to grow up? News flash….I didn’t DO anything to ANY of YOU!!!! Soooooo…..do me a favor….. FUCK OFF! Oh, wait, I mean move on already. Shit, at this point maybe I mean a little of both.

That is the problem with people in your circle (family, friends, extended or close)…..you don’t want to give a rats ass…..and part of you doesn’t, but then part of you does. What gets me is that here you were one day with a perfectly good relationship and with a few damaging lies, it all becomes a mess. I guess at that point I ask if they ever really knew who I was to begin with. If an entire lifetime of a relationship can be undone by a few lies, then what was our relationship really about? Even for the shorter relationships, to never stop and say wait…..thats not the person I know. That just bothers me to no end. Probably because that is NOT how I treat the people I love and care about. I guess I have a loyalty to my friends and family. Everyone has their quirks or differences, but deep down, if you are in my circle, it’s because I believe you to be a good person. I like to surround myself with people of similar morals. We are all different in many ways, but ultimately, the core values are there.

For me it’s always the principal of the fact. If I did something wrong, I am perfectly able and willing to admit to my part and apologize and move forward. I own my shit. However, if I have literally done NOTHING……I have a big issue with you treating me like scum on the bottom of your shoe. Especially when you don’t have the balls to say anything to my face. You just sit there with your passive aggressive ‘lets pretend she doesn’t exist while she is in the same room as us’ shitty behaviour, or the ‘I’m better than you and have chosen to ignore that I am where I am because of you’ ……really?  Just…really? Look, I don’t want a parade or a pat on the back every time I see you. But is it too much to ask for you to act like a normal human being? Or ….. Oh I don’t know, apologize for the rude ass way you all have been acting? Guess so! Say you are sorry when you do something wrong? Make amends when you lie?! I guess I just didn’t think those things were so darn difficult.

I spend an astronomical amount of time sitting around thinking about all of these things. What else do I do? I can’t work. Most of the time I am barely able to move. My brain has tons of ideas of what I would like to do instead of sit around and think about how the people I have spent a lifetime doing things for or supporting can’t be bothered with righting their wrongs. Like I should just suck it up and deal with it. I think I suck enough up on a daily basis. I don’t think I should have to do the same with behavior and actions from others. Maybe it’s not fair, but that is just how I feel about it.

No one, and I mean NO ONE is more put out, aggrivated, disappointed, upset, angry, sad, hurt or pissed off more than I am because of the situation I am in. Literally having a lifetime of relying on myself to now not be able to do that nearly kills me. Imagine if the one thing that made you who you were was taken from you. How would you feel? Now add-on top of that people who you thought would always be there for you are also now making you feel bad about it being gone even though it was completely out of your control.

The only silver lining to any of this is that at least I got almost 38 years before this hit me. I see people who are younger with this disease and it breaks my heart. I’ve seen people who have taken their lives and although I am saddened, I completely understand their decision. I have an extremely high pain tolerance, so I can’t imagine how much worse this all would be if I couldn’t handle physical pain as well as I can already. Even so, it’s exhausting. But more so than that, is to feel alone. I don’t expect people to completely understand what it is I am going through. But I would expect the same respect I would give them. Compassion and an attempt at understanding with a lot of listening.

You don’t know? Ask. You don’t understand? Ask. You don’t get it? Try.

 

A Constant Sidetrack

We all make plans for ourselves, from daily tasks to lifelong dreams.  We are beings of purpose; of goals. So exactly what do you do when it seems like it’s one constant sidetrack after another? That is precisely where I am residing at this point in my life; in a constant sidetrack loop. There’s a saying about best laid plans, I’m not precisely sure how that one ends, but my cliffs notes version is it all goes to shit while you are looking the other way.

A bit of a gypsy, I’ve always made plans with the foresight and understanding that perfection is overrated and curve balls can be educational. I’m ok with all of that. I mean come on, what kind of life is it if you are living with such rigidity that you forget how to be flexible? If you don’t learn to bend a little, you just might break. I love to be spontaneous and go where the wind takes me, though you wouldn’t exactly know that by the way I live my life these days. After all, I’m poor, so travel is in my head more so than in the actuality. Before kids, a different story, I  once picked up and moved to Washington state with a boyfriend just for the experience and fun. It was! I don’t regret it for a minute. Washington state is beautiful. If you haven’t gone, you should give it a try. Even tried out rural Iowa for a bit. Aside from my eternal hate for the climate in the midwest, it was nice. Picked up all the kids and our lives and moved to Texas for a short stint once. Beautiful land! Let me tell you, being from southern California, outdoor living suits me just fine.

One of the most important things to me has always been my intention to move back home once all of my children were grown, graduated from high school and/or on a track toward their own goals and dreams. I don’t really know if I am ‘from’ somewhere specifically. I might have to google the literal definition on that one. LIke I said, a bit of a gypsy, I haven’t stayed put in one place too long to grow roots. I’ve been in our house for 8 years now…….longest time I have ever spent in one place, yet I still don’t consider it my home or where I am from; it’s my address, nothing more. The only true connection I ever felt to any one place, would be California. Maybe it’s because that is where I graduated from high school. Or maybe it’s because I love sunshine, the beach, warm weather and outdoor living. Might be because it’s the place that I started to figure out who I was as a person. Could be that is where I connected with people who I am still friends with to this day, and miss every single day of my life. I guess I think of it as my home or where I am ‘from’ because it’s where I discovered my inner happiness and how to be that in spite of anyone or anything else. Maybe it’s because there is no better peace I have ever felt than the peace I feel when sitting on the beach watching the waves come in and take all my troubles away with the tide.  Because of that, I have always dreamed of the day that I would be able to go back. It has been my plan since the day I left. I don’t exactly know how or when, but one day, I will go home. I just hope it’s before I’m in an urn being tossed into the ocean.

Number two on my dreams list, or maybe it’s tied with number one, I’m not for sure, is wanting to finish my education. I have been waiting years upon years to enact my college plan. I can’t count how many times I was ready to go and something came up. Once was 4 years ago, but another sidetrack was about to derail those plans. I needed a better job, which would require finally going back to college to finish my RN. I had been waiting patiently for my children to get to an age where I could afford to take the distraction. Seemed like every time I was about to enroll, something would come up and put college on the back burner. At this particular juncture the hold up was the hubby’s job had cut his hours while systematically chopping his benefits left and right. He was completely miserable and the anxiety of the possible closing of the company turned into an opportunity for him to go to college. We were both miserable in our jobs and needing a change. Self drawing the short straw, the hubby enrolled in college and I took a different job, not even close to nursing, for the pay and the benefits. He worked part-time and went to school full-time and I was able to cash in on all the overtime. Aside from the fact I HATED the cold, (honestly I’m not sure there’s a word in the English language that covers the depths of my despise of having to work out in the frigid temps) I put on my big girl coveralls and did what I had to do to support my family. Including pep talks and tons of support oozing out of me to keep the hubby on track and confident that the work is worth it and the end is near. Two years later he was able to graduate, with honors!!  Double the excitement came because my oldest daughter graduated from high school at the same time!

My oldest was off to nursing school and was adamantly wanting me to join her. I almost went for it too. The excitement of finally being able to do something for myself partnered with the bonus of sharing the journey with my daughter was looking very tempting. However, the timing was not going to work out. The hubby hadn’t procured employment yet and there was no way in hell we could be without health coverage. Not to mention, having two people attending college at the same time might have been a bit of a financial nightmare. Had we known the hubby was about to find a great job a couple of months later, we might have been able to figure something out. Hindsight. It can suck. Anyways….I  sent my oldest on her journey alone while I stayed where I was. Not fun working in the elements in Nebraska. I’m telling you right now, it’s winter 9 months out of the year!! The remaining three months are so damn hot and humid I think the rainforest would feel like a cool vacation. The cold weather and I don’t get along, causes flare ups in pain for me. Lately the humidity isn’t cutting me any breaks either. Can you tell I’m not a fan? hahaha

 Hubby got that great job with a great company and the next year we were able to utilize his benefits. Now we are two years later and my next daughter is graduating high school. I was hoping it could be my turn to go to school now that the hubby was settled in his job and kid number two was off to college as well, but plans don’t always go the way you intend when you have 4 other lives to consider.  Nope, turns out instead I get a nerve disease and become disabled. Guess the universe didn’t think we had enough on our plate. Took almost a year of too many docs and too many tests to figure out what was going on. Well, crap! That is NOT how I had things planned at all. I tried to keep working at first, but alas, the physicality of the job was taking too much out of me. I had a 33 day migraine at one point. I do not recommend that by the way. Not good times.

Brings us to our current situation where we are down to one kiddo with a year and a half left in high school, so of course another wrench gets thrown into the machine. After much consideration and numerous talks with the ex, my son and his psychiatrist, we decided it was best to let my son try living with his dad. That happens to be an hour away, and in Iowa, so that means I will only get to see him on weekends he is available. He is 16 and will be driving and working soon so I know how that goes. I have two older daughters remember. I can’t even begin to explain how extraordinarily difficult this change has been. I went from all three kids at home to an empty nest in a matter of a couple of days! Yikes! Psychological meltdown in progress…… I had an imaginary timeline where I had over a year at the very least to wrap my head around the idea of an empty nest. Guess that went out the window. At this point you would think I would just stop trying to make plans.

Constantly sidetracked year after year. Changes left and right. Those darned best laid plans have all gone to hell in a handbasket. The universe needs to calm the hell down. Not cute…..can we get on the same page please? Just once? I could use a break.

I’m in need of visiting the social security office to file for disability. I not only have no idea where to begin with that process, I also don’t want to. It would be admitting defeat. It about killed me to stop working. I don’t depend on other people. I help others and I support others and I am ok with that. It’s who I am and what I do. To have to rely on someone else just about drives me insane. Partially because history has taught me that I am the only one looking out for me (some might say that’s irrational thinking and I’m at about 50/50 on agreeing with that) and partially because I’m not good at letting other’s take care of me (I’m stubborn and I’m not exactly sure what that would look like). I assume it would look a little like what I have spent my life, giving to my family. I have mostly been met with whispers behind my back and judging eyes hovering above the fake smiles from people I thought were on my side. I don’t expect everyone to understand what I’m going through, I am having a hard time accepting it all myself. However, a little common decency would go a long way. After all, I’m the same person I have always been. I would still give anyone the shirt off my back in a minute to someone in need, still a wife and a mother who gives to her family before herself, and still that stubborn control freak who hates feeling like a burden to anyone so if I ask for help, you can bet the farm it’s because I need it.

Now what? Go to school? I would love to. Can I handle it? If I can’t even hold a job, how am I to go to school? What do I go for? Nursing? What if I can’t ever use my left hand to its full potential ever again? What if the CRPS continues to spread? Will going to nursing school just be a waste of time, money and energy? Maybe I can go for business so I could open my own store one day. I am in love with architectural salvage and repurpose and design. Yet I don’t know the first thing about running that kind of business. I wouldn’t want to run that business here even if I did finish school for that. Having my own store would make sense because even if I couldn’t physically do what I need to, I could tell someone what I want and have things built or moved….right? I can be bossy hahaha. All three of my doctors have made it clear I live in the wrong environment and that warmer, consistent climate would do me a world of good. Haha!! See?! I told you I need to move back home! For ten days in March of last year when I was in warm, beautiful California, it was the best ten days ever! Physically my pain levels were completely tolerable on minimal medication. Talk about an asset. I could probably work there! That might be wishful thinking, but I am in denial with the whole disability thing…..remeber? Wow….I need to move to step 2……acceptance. Or do I?

Grrrrr……I need a sign or something. Like winning the lottery! That would be beneficial! For sure! lol  Obviously making plans isn’t working out for me. I feel as if I am in a holding pattern. I think people dealing with a chronic illness feel the same way. My mind says I am perfectly capable of doing so many things, while my body snickers loudly and hollers out ‘Wanna bet?!’ every time I try to do anything requiring any physical effort. It’s a cruel joke I am living in. I have spent my entire life putting my family’s needs above my own and when I finally have five minutes to maybe do something for myself, a nerve disease pops on by to completely jack up my plans. What a jerk! CRPS is a selfish, self-centered jerk! Not cool, not cool at all.

I have a tad bit of hopefulness thanks to having three great docs on my side and a new med that seems promising. Don’t want to jinx myself since it is still very early and I have a long way to go. I feel like I need to hang on to that little bit of vision of one day being able to do something for myself, otherwise, what’s the point? Having lost a couple of fellow CRPSers this year, seemingly because they asked themselves the same questions and came up empty, it becomes that much more important to find a light at the end of the tunnel. I know we aren’t supposed to need  the support and encouragement of anyone else because ultimately we need to do things for ourselves…….but when you’re constantly being kicked while you’re down, a hand up would sure be nice. That’s why it’s important to pay the same love and attention to those that love you and pay attention to you. Be mindful when someone gives you a hand that you don’t accidentally step on their back on your way up.

You set a timeline of events that maps out your purpose. Sometimes there are side tracks along the way. There are times when your purpose is altered or shifted. It’s all part of life. I have learned to go with the flow for the most part. Don’t get me wrong, I have my freak out moments, but I usually get over myself and move forward. What do you do when the sidetrack becomes overwhelming and your purpose becomes unknown? The timeline, the plan, it all comes to an end before you had time to venture down your own path. There you are, left without a purpose, feeling alone, no one to cheer you on or support you the way you always support and cheer on everyone else. Its depressing. I can see how depression can be overwhelming. Truth is no one does anything on their own. achievements are gained on the backs of those that supported and encouraged you along your way. Ever notice how all success stories start out, ‘If it wasn’t for so and so….’  Even the strongest, most independent people deep down need the same support and cheering section that the rest of you need. Maybe moreso. Because if we don’t have that, we are left alone to feel like maybe our purpose, our dreams, our goals are selfish and unworthy.

So Much Loss

I am fairly new to this disease. CRPS has taken what was a very active, super busy, multi tasking kind of life and flipped it upside down. These days, approximately 80% of my life is being confined to my bed.

 

 

Two years ago I was running 5K’s with my hubby, working a very physical job 40-60 hours a week and raising three teenagers full-time. These days, I’m a happy camper if I can make it through a night out with friends involving hanging out at our house or theirs, playing cards for a bit, or meeting up for dinner. I’m usually exhausted the entire next day….you know, cuz isn’t everyone tore up after a few hours of sitting and talking?! Ugh!

 

 

 

The life adjustment is not a fun ride. I have not been able to work for about 10 months now. It’s really fun when I get the ‘must be nice not to have to work’ or ‘must be nice being able to stay home all day doing nothing’ sorts of comments. Uhhh, well, it might be nice to not have to work and be home all day doing whatever I wanted to if I could actually AFFORD to NOT work and was able to actually DO anything I wanted whenever I wanted. However, that is not the case. It’s far from glamorous, trust me. Think back to a time you were in so much pain you would have given your left arm if only you could crawl out of your own body and run away. Think of a time you had the flu or some sickness that took all your energy from you; when you couldn’t even hardly walk from your bed to the bathroom without feeling completely exhausted. Was that fun? Did you enjoy yourself? Were you having a good ole time? Well, newsflash……neither am I.

The topper of good times has to be all the people in my life Ithought were my friends or family that loved me unconditionally and would never turn their back on me, who now give me those looks of disbelief or better yet, talk about me behind my back as they either smile to my face or have slowly cut me out of their lives. Nothing says love like those that turn their backs on you for something you have no control over and would give your left arm to be free of if the opportunity presented itself. Though all of those things that have been taken or have changed is bad enough…….there’s more. The worst part is the lives this disease has taken.

I joined a support groups so I could talk, listen, give and get advise, understanding, compassion, and true, no-strings-attached support. I have a small handful of people in my life that I completely trust 100%. People who I know understand what I am going through. People who don’t whisper behind my back with judgements and doubt the facts they haven’t bothered to ask me about. People who get that my smile is the facade, not the pain. People who treat me like a human being with respect and love, not spreading lies and rumors. I am grateful to have a couple of people who I can be completely honest with and know that they get what I am dealing with or at least have the balls to ask questions when they don’t understand something. A larger set of those people come from my support group. They are the ones that know beyond knowing because they are going through the same thing I am or worse. Sadly, this year alone, we have lost 3 people. Three lives have been cut short because of this horrible, misunderstood, and vicious disease. What CRPS takes more than anything is our lives….bit by bit.

As if it weren’t bad enough to have to deal with one of the most painful diseases out there, why shouldn’t it take away the smiles, and laughter and hope. Suicide takes the lives of nearly 40,000 Americans every year! Some are diagnosed clinical depression, but a large majority of those are people stricken with chronic illness or chronic pain. Our group is extremely sensitive when a fellow friend passes away. A lot of the time specifics aren’t exploited and comments aren’t running wild. We respect each other and each others family members. This disease is hard enough without us turning into the very people we flocked to this group to avoid. I know we aren’t e only support group, there are many, and that makes me very happy. Finding my group made me feel like I wasn’t alone, which is how I feel most of the time. No matter how many people surround us, we are alone in the pain and the suffering and the shadows of what our lives used to be.

It breaks my heart that these people felt like their only option was to leave this life. Yet, I understand it. I get it. I have struggled with those very thoughts more times that I would like to admit. There is nothing worse than looking at the people you support no matter what and have them turn their back on you, or worse, smile as if they understand while you know they are just cutting you down the moment your ear is turned. We have physicians who don’t believe us, or who have no clue what is going on, or think we are drug seekers. We have spouses, family and/or friends who…….don’t believe us, think we are exaggerating, think we are being lazy, make up stories about us, talk behind our backs, tell lies, accuse us of taking too many medications or say we self medicate, smile to our faces while they slowly delete us from Facebook and stop inviting us over or out…….you name it……it happens. So maybe, just once, people could stop, and listen and understand and believe and have some compassion and just once……..give those of us suffering with something most of you can only imagine in your worst nightmares  just a sliver of hope.

Yes, it’s much more entertaining to share tweets about celebs and Facebook posts of funny videos and sharing pages of people you don’t even know selling shit you don’t even buy. But you might just do a little for your cosmic karma if you do something unselfish and see past yourself just once. That just might be the one time you save someones life. Be a voice. Be an advocate!

My heart goes out to their loved ones left behind, feeling powerless and lost. My heart goes out to those that have lost their lives; for those that thought checking out was the only way to find peace. I know the pain. I know your wish for understanding, compassion, a cure or at the very least an effective treatment. Don’t give up. Please find a support group if you have nothing else. We may not have all the answers, but I guarantee you that you will NOT be alone!

If you can, please go to www.powerofpain.org/donate and make a donation to the research of RSD/ CRPS. When someone in your life is going through something you don’t know about or understand, do them a favor and ask and do some research on your own, and above all……don’t forget  they are the same person you have always known and loved, and even if they have a smile on their face, they might need you now more than ever. You might just save their life!

Awaiting the Next Step

This weather change has not been my friend. It used to be I would have to be outside to feel the pain in my joints and muscles. These days, I can be inside, oblivious to what is happening outside and my body will tell me when a storm is coming far before the weather man. I feel like I should get paid for being an early warning detection system. Wouldn’t that be fantastic. Haha

My fabulous Rheumatology Physician has secured me an appointment with a pain management specialist familiar with ketamine infusions…..andddd……its December 4th! Of this year! lol

Anyone who has ever had to schedule an appointment with a specialists understands how impossible this feat is. I have my fingers crossed he thinks that ketamine infusions is my best next step and can arrange it before the end of the year. First, because I don’t think I can make it through winter without something being done about my pain. I do not have my pain under control. I worry all day every day how I am going to make it through each day. Secondly, I met my deductible 3 months into the year….so they need to do the expensive stuff before our insurance starts over! We can’t handle anymore medical bills.

Well, keep your fingers crossed I find relief soon. Otherwise, I may run away to the nearest beach! hahaha

Headboards to Mickey Mouse Bench

A very good friend of mine was going to be turning 40 and I wanted to make her a little something special. She is OBSESSED with Mickey Mouse! I found a Mickey Mouse cut out headboard on Craigslist a few months ago and I knew I had to make it i to a bench for her!

We have all been on Pinterest and seen the millions of tutorials and DIY directions for making your own bench from a headboard or headboard and footboard. Me too! I am slightly obsessed with Pinterest. When I am laid up and unable to do anything…..I live vicariously through Pinterest. hahaha Don’t we all?

Anyway, I thought I can totally do that!!! Easy peasy! Oh man…..sometimes I really overestimate my talents. As far as I am concerned, nothing ventured, nothing gained. I knew I would be able to pull it off, it was just the easy peasy part I blew out of proportion.

I am also in love with Annie Sloan Chalk Paints! Seriously, if you haven’t used these…..YOU NEED TOO!!! I am an instant gratification kinda girl, so things like prep time and dry time make me insane. I hate dry time!! I have expressed this loathsome little detail in my other posts haven’t I? Yeah well, I most likely will continue to do so. Ok, so back to obsessed with chalk paint….its amazeballs! You can literally paint over nearly anything without having to sand or prime or any of that annoying prep stuff. See? Amazeballs!!! Problem….it’s a bit pricey for this recently disabled, poor chick. Also, there is only one store that actually sells it, otherwise you have to order it online. Uhhhh…..I have an issue with dry time, so you can guess waiting for paint to be shipped to me is just too much to ask for! I went to the local distributor here in town called Keep The Piece and purchased a small sampler of the Red color I really liked. From there, I went to Home Depot, my other home, and bought a similar color of regular latex paint along with a container of Plaster Of Paris.

When I got home, I decided to attempt to make my own chalk paint. It turned out great!! Again, a Pinterest recipe! It’s one part hot water mix with one part Plaster of Paris and once that is dissolved and you let the water and paris mixture cool, you add 3 parts paint.

There I am ……mixing away. The mix turned out great! It had the same feel and consistency as the Annie Sloan brand I had purchased. Now, here’s the bottom line…if you can afford the Annie Sloan….BUY IT! It really is worth it. I bought Pure White Annie Sloan Chalk Paint and I believe its about a quart size and I have done a big workbench and a couple smaller projects and 4mirrors and I still have about 1/4 of it left. I don’t know how that is possible, but I have some left! I swear it multiplies when I am not looking. Hahaha This is not the case when you make your own. I used a quart and made my own chalk paint and I wiped that can dry using every drop for my bench. So, if you are on the cheap….make your own….but if you can afford it, buy the Annie Sloan.

So…..I got busy. I ended up cutting a mouse off of both ends of the headboard because it was just too long. Even after cutting it down, it ended up about 5′ long. I used a second headboard I had gotten for free to use as the arms. It was heavy and solid and had a spindle like detail I thought would look nice.

Remember those easy diy instructions? Yeah…..I think after you do a few it gets easier. However, the first time is a bit tricky. Or maybe that is just me. It is quite possible. lol

I got so involved in actually building it, I didn’t take pics of the step by step process. Sorry! Not really doing a tutorial here, just sharing the end result. I will give you the basics this time and show you the pics and hopefully next time I will be a little more comfortable with the process and  try to show you some easier ways to do things.

Anyway, I cut the spindle headboard in half and then chopped the legs off to be the height I wanted them to be. Again, thank goodness for Pinterest, because I didn’t consider that I would have to know how high a typical bench is and how deep and all of that fun stuff. I made my bench 5′ wide and 19″ tall and 18″ deep. I made it for my friend who is very tall and has some big boys who may sit on her bench so I made it big and sturdy! I used 2×4’s to make the frame for the seat and to reinforce the seat itself. I used 1×6″ boards cut to length for the seat. I used screws to attach everything. I also predrilled for the screws so not to split the wood. I also used wood glue to further reinforce anything I had to screw together. I told you….I wanted it to be sturdy hahaha.

This is a partially painted view of the bench for you.

I had the kids help me lift it up onto my sawhorses. Waaaayyy easier to paint that way!

After I painted the whole thing, underside and all…I decided I didn’t like it all red with no contrast. It felt like it was just too plain. So I decided to add some black to it and distress it a little.

I like it much better with the red being broken up a little. I used black on the inside of the mickey cutouts too just to make them pop a bit.

Now, Annie Sloan says that when you use chalk paint on a piece that is going to be outside….do NOT wax it. Well…..I’m not a very good listener. I used some dark wax to add to the distressing and some clear wax on the seat and back and spindles to get that smooth feel. The thing I don’t like about distressing a piece is if it feels rough and chippy. I don’t like that! I want to feel silk when I touch a piece I have finished. So….I broke the rules on that one…kind of. I didn’t wax the underside or back at all. I only waxed the parts that would be sat on touched a lot with your hands.

 

Here is a closer look at the finished product. I really like how it turned out. It is huge and heavy! But, my friend Tammy loves it and that was what I was going for. I have an old crib and a ton of pallets I have plans for and I will be sure to take more photos and go i to more detail about how to build a bench next time. We had about 2 weeks, off and on, of beautiful weather that let my body cooperate with me to get this done. It is gorgeous again this week and sadly my stupid back is out!!! Grrrrr!!!! I am making a large mirror with a frame and refinishing a desk and a bunch of smalls for my daughters’ room. I have been taking a lot of photos and I will keep working and post the processes as soon as I can.

So get off your booties, after binging on Pinterest and go make your own benches! It really was fun. I learned a lot from the process and can’t wait to make another one.

 

 

 

Invisible Illness, Double Edge Sword

An invisible illness is an illness or disability that is not immediately apparent to others. People with visual, hearing or pain disabilities are among those with the invisibility factor.  Invisible disabilities are chronic conditions that severely impact normal activities of daily living (ADL’s). 96% of individuals in The United States who suffer from chronic medical conditions, show no outward signs of their illness. Over 10% of those people are considered disabled.

Invisible illnesses can interfere with the ADL’s of those with chronic conditions even if they are not considered disabled. Considering the astronomical hoops that one is expected to jump through just to get their disability case processed, this low number is not surprising. Work, school, relationships, physical activity, and sleep can all be impeded at any moment and most often with no warning. Most people do not or cannot understand the challenges that these people are met with because they are unable to see  whats going on. Though friends or family members may notice that something isn’t quite normal, they are most likely unable to pinpoint an exact answer to their questions. Or worse, when the answers are given and the disability or illness explained, it’s received with disbelief, misunderstanding, or lack of empathy.

A little over a year ago, the last two fingers on my left hand went numb. It was a cross between numb and that pins and needles feeling we are all familiar with when a limb falls asleep. Problem was, it wouldn’t go away. After a few days I couldn’t take it anymore and went to my family doctor. Believing I had somehow pinched the ulnar nerve in my arm, I was prescribed anti-inflamatories, a round of steroids and physical therapy. Instead of relief, the sensation spread. The pins and needles feeling turned to pain, spread to my entire hand and was moving up my arm. Thus began a grueling, frustrating, and exhausting journey that encompassed multiple specialists, tests, blood work, scans, emg’s, more specialists, more blood work, and more scans. To date, I have seen a family doc, an internal med doc, 3 Neurologists, a pain management doc, a massage therapist, a chiropractor, an acupuncturists,  and finally, a specialty rheumatologist.

On January 10th of this year, while seeing the specialty rheumatologist (that took almost 4 months to get into!) I finally got an answer. I wanted to hug her! I had spent over 10 months not knowing what was happening and what was wrong with me. My pain was nearly unmanageable, I wasn’t able to work, and in November, the same symptoms that I had experienced in the beginning of this hellish journey, not only spread to my entire left hand and arm, but decided to jump on over and start attacking my right one. I was diagnosed with CRPS. I immediately joked, asking if that were similar to CRS- can’t remember shit?….because I think I have that too! hahaha  Thankfully, my rheumatologist, Dr. Wildy, is not only a genius, she has a fantastic sense of humor.

CRPS stands for Complex Regional Pain Syndrome. Wikipedia states “Complex regional pain syndrome (CRPS) formerly reflex sympathetic dystrophy (RSD), “causalgia”, or reflex neurovascular dystrophy (RND) is an amplified musculoskeletal pain syndrome (AMPS). It is a chronic systemic disease characterized by severe pain, swelling, and changes in the skin. CRPS is expected to worsen over time. It often initially affects an arm or a leg and often spreads throughout the body. CRPS causes obvious nerve damage and leans towards the more painful and difficult to control syndromes.CRPS has the unfortunate honour of being described as the most painful long-term condition (of those that have been tested), scoring 42 out of a possible 50 on the McGill pain scale, above such events as amputation and childbirth.” There is no cure. This will eventually lead to diminished bone density, and all that can be done is to manage the pain.

So now you are probably asking yourself why in the hell did I want to hug my doctor?! That’s an easy one….. Because she gave me an ANSWER!!! Going through every bit of the hell I was going through was made even worse by never being able to put a name to what was happening to me. Finally having a straight forward answer was like having 100 pounds lifted off my shoulders. I was beginning to feel as if I were going crazy. I was seeing top specialist after top specialist, being poked and prodded at each and every visit, being told I have nerve damage but no one could seem to find the cause or why it was spreading. Yep, something is definitely wrong with you, we just don’t know what exactly or how, or why, or if there is anything that can be done. So…have a nice day, take these pills and …..then they would push me off to yet another doc so I could go through the same damn thing with someone new. Yay me! Trust me, not knowing what’s wrong with you is much more difficult to handle than most people would think.

I was finally able to explain to my family and friends exactly what I was dealing with. I still get the ‘you feeling better today?’ questions, and the ‘you look like you are doing much better’ comments from various friends or family members. This continually perplexes me. NO! No I am NOT feeling better today, and uhhhh thanks?? I think….sooo today I don’t look like shit as much as I did the last time you saw me? I am in constant pain, 24 long hours a day, 7 days a week, awake or asleep, it never, ever, ever ends! I take heavy-duty medications that help (and sometimes don’t help) lower my pain level from a 12 on a 1-10 scale down to about a 4. Even when I am smiling and laughing and having a great time, I am in pain. If I am awake, I am in pain. If I am sleeping, I am in pain. For over 14 months now, I cannot name one single moment that I have not been in pain. Not a single second!

I was in the healthcare industry for over 16 years. I worked as an MA for internal med docs and family med docs and I have dealt with chronic pain patients too many times to count. I was always sympathetic and professional and tried to be as understanding as possible. But I will admit, I never truly ‘got it’ until I experienced chronic pain myself. I truly believe that unless you personally experience chronic pain….you can never fully understand what it all entails. So I kind of understand where people are coming from. If you get sick, eventually you get better. That’s a logical thought process. However, this isn’t a virus or an infection; this will never get better. This isn’t a cancer, it can’t be removed and I won’t go into remission, and it isn’t going to shut down my organs and cause me to die, although there are many times throughout any given day that I feel like I am dying. I am in never-ending pain and it will never go away. Period. So I may be smiling or laughing or had a little more time to pull myself together, but I am ALWAYS in pain. It never ends. Never.

People can’t see pain. It’s not visible like a broken limb. People have a difficult time comprehending what they cannot see. To me, that is frustrating. Besides being in excruciating pain, dealing with a brain that can barely remember what I had for lunch an hour ago, and coming to grips with the fact my life is forever changed by this disease, I find myself being frustrated and mad and hurt that I have to constantly explain myself or my actions. Or worse….not being able to explain because instead I get the looks that say ‘i don’t believe you’ or ‘she is using it as an excuse’ or ‘it can’t be that bad.’ ……and so many, many more looks. I won’t even bother to mention the things that are said behind my back. The horrible things that do in fact make their way back to my ears. It’s hurtful. I try my best to ignore it. But, I am human and sometimes it’s very disappointing to find out that people you once thought loved and supported you, can’t bother themselves to learn about your disease and have some compassion. No matter how inconvenient MY disease is to YOU, I promise you, I am suffering a million times more than you will ever know. Sometimes I wish there was a way that people could see what I have. That maybe that would make it easier to understand so the looks  will stop. Things like that make me appreciate those that do understand that much more. The people in my life, that despite the smile on my face, can take one look at my eyes and know the truth. That one moment of understanding, or those few words of encouragement mean the world to me. I can’t thank those people enough.

I have a very, very close friend that was recently diagnosed with Mal de debarquement (or Mal de débarquement) syndrome (MdDS, or disembarkment syndrome). Symptoms most frequently reported include a persistent sensation of motion usually described as rocking, swaying, or bobbing; difficulty maintaining balance; extreme fatigue; and difficulty concentrating (“brain fog”), dizziness, visual disturbances, headaches and/or migraine headaches, the feeling of pressure in the brain, confusion, and anxiety she told me that . Many patients also describe ear symptoms such as hyperacusis, tinnitus, “fullness”, pain, or even decreased hearing. Cognitive impairment (“brain fog”) includes an inability to recall words, short-term memory loss, and an inability to multi-task, unable to use a computer for any length of time and some MdDS sufferers report they are even unable to watch television, the symptoms are very debilitating and can fluctuate on a daily basis, affecting greatly daily and social activities.

She too was on a long journey, frequently frustrated with doctors and the inability to get a straight answer. When she finally received a diagnosis, she was eager to explain what was happening to her family and a few close friends. She too has, and continues to experience the negative effects of having an invisible illness. Some people just can’t grasp the concept of things they can’t see. However, in her professional life, she is happy that people can’t see what’s happening to her. I remember the day she told me about her disease and the problems she faced. I understood her frustration. She was afraid that if people knew what she was going through they would stop trusting her to do her job. I remember thinking how awful that was. I wanted people to see what was going on so I didn’t have to deal with the added pressure of handling others’ questions and doubts. So I wouldn’t have to carry more emotional stress. Here she was wishing the invisibility of her disease to stay strong to avoid the questions and doubts that she could do her job.

A couple of weeks ago I saw Mal de debarquement (MdDS) being discussed on The Doctors. I was so excited, I called my friend right away and left her a message. I left her a message saying I was happy to see a popular medical show shed light on a rare and mostly unknown disease. She called me back once she returned home from her vacation. She told me that she cried when she listened to my message because she thought ‘Kat believes me’ and that meant so much to her. I assured her that from the moment she shared with me what her diagnosis was, I believed her, never doubted her for a moment. Technically, I believed in her even before she had a diagnosis, I believed in her when she first began her health issues. For her, something in that message, at that moment in her life, it meant even more than just belief. That is the feeling I experience  in those knowing glances and words of quiet encouragement I get from those people I love that see through my laughter and smiles.

Invisible illnesses a double-edged sword. For some of us, it’s a curse that takes an emotional toll on our hearts, making us question those we have never questioned before.  For others, it’s a cloak that keeps our secrets and preserves portions of our lives we aren’t willing to compromise. It’s a bright light that opens your eyes to the people in your life…..the ones who support you and the ones who doubt and hinder you. Double edged sword indeed. Sometimes it’s not fun and the hurt can run deep, but there is a peace and a joy that comes with truth, and for me, that will always outshine any lasting effects of negativity.

Educate yourselves. Learn about things that are beyond you. If you love and care about someone, seek to understand what they might be going through. We have all heard the expression ‘walk a mile in someone else’s shoes’ …..well, do it! Imagine your life was suddenly and drastically changed without so much as a moments notice…..how would you want your friends and family treating you? My guess….. Honesty, love, respect, understanding, and empathy.