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Mulling Over A Dream

It was quiet when my eyes were closed. It was when I could be at peace despite my world falling to pieces. I could be in the middle of a crowded room, or in busy store, or even now, as I lay on this cold bed in the middle of the local emergency room… With my eyes closed, I could shut the ugliness of the world out, maybe even pretend I was well again.

Not even a week had passed of 2018, and here I was with an IV in my arm, my mom sleeping next to me in a cold hospital chair. As per usual, no one had any idea what was wrong with me. A fate I had grown accustomed to. Leaving five hours later with a prescription for painkillers I’d never fill, and a suggestion to “get some rest”.

My problem is I can never get enough rest. Not if I want to attempt to have a life by any standards. I can’t sleep my life away afterall.

So in that hospital bed I lay with my eyes closed, waiting for no news. And in that quietness I fell asleep, mulling over a dream. A dream I’ve had many times. One that I know now will unlikely come true. Not so much a dream, but more of a memory…

The last memory of my other life.

The life I had before this was all I knew.

A life that wasn’t filled with medications, cold hospital rooms, and the constant threat of more pain, more fatigue, and a new diagnosis every six months.

Furthermore, a life where I would find someone who loved me for me. Where they wouldn’t look at me and see broken. Where they would marry me no matter how many years we may have together. A life with choices, and maybe children.

It was a good dream. But eventually I woke up and opened my eyes… Back to the cold hospital bed, to the doctor telling me she could do no more. Back to my reality.

I slept for a long while that day, once I had climbed back into my own bed, and my mom departed for the long trip home. I was used to this aftermath of hospital visits. Used to the bed rest, dehydration, and exhaustion that inevitably followed. Used to the loneliness, the unbearable loneliness that came with my disease.

But this time something new followed, I was not so alone. He came with food, and hugs, and the support I needed to get through it without falling apart. And in the days that followed, I realised his love allowed me to mull over a new dream.

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Our footprints

I recently ended a two week long road trip around the South Island of New Zealand. A trip that I never thought I’d be able to take at this point in my life.

At 36, I never thought I’d be struggling under the burden of multiple chronic illnesses. Never thought that I would live each day in pain and fatigue, wondering if or when it would all end. In March of 2016, one of the eleven doctors and specialists that I saw on a regular basis told me that I was living on a clock. A clock that no woman in her mid-thirties should have had to think about. A clock that was slowly counting down the time unto which my life would end. I had time, years in fact. But not decades, like most my age looked forward to. Ten years minimum, fifteen if I got lucky.

I took that news on my own, silently in his office, starting at my hands as if they were supposed to provide me with the answers he didn’t have. If they could find a medication that worked for me, more time could be bought. But they hadn’t found anything in the years leading up, and every day my disease turned more aggressive. Every time I visited a doctor a new diagnosis would be presented, or the bad news of a failed medication would be shared. Years of allergies and intolerance to the leading drugs for my diseases, countless failed treatments, and pain, so much pain. And then to hear that despite all my optimism I was going to die sooner than maybe even my own parents…

Five months later I landed in the Intensive Cardiac Unit at Queens Medical Center for ten days. I survived a “multiple cardiac event”, according to my cardiologist and the medical team that looked after me. Despite my doctors projections, my body had other ideas in mind for my time left on earth.

But something changed in me the night that I almost died. It’s not that I wanted to go… Sure some of us living with chronic pain have been down that road where we wonder if the pain is worth going on. Nothing as dark as giving into those thoughts though. And in the middle of my second heart attack of the night on my third night in hospital, apparently when the pain became too great that I actually blacked out, I had an epiphany.

No, I did not “see the light“. I mean yes, there was light, but clearly it was the doctors shining something in my face trying to wake me. I did however feel like I had a choice. A choice on whether to let go, or to continue on.

I don’t know how long I was in that place, probably only seconds. Later my doctors told me I could have died. And I knew if I had been willing to give up, I would have. But something had changed. Despite all the pain, and the knowing I didn’t have long, I still wanted to continue. Something told me that I had purpose.

A year and a half later I finally understand what that is.

Earlier this year I made the life changing decision to move to New Zealand, as healthcare was more accessible for me there as I was a citizen. More so than it was in the US, as it wasn’t affordable, even on Federal Disability. It was a chance to turn my life around as well, live healthier, make friends, maybe find my purpose.

I started bi-monthly Infliximab infusions in June, and had successfully gotten myself off most of my hardcore painkillers by October. I’d even lost a large portion of weight that I’d gained from years of Prednisone usage. I got some new hobbies, joined groups, and made friends, so many friends. I even started dating for the first time in two and a half years.

Sure, I was still in pain. My disease didn’t magically disappear because I moved. Chronic illnesses don’t drift off when you find love, despite what Disney movies try to teach us. I still spent multiple days in bed, fatigued beyond repair. Lung Disease reared its ugly head in a new diagnosis in August. Lupus followed soon after..

The change was that I felt I was around more people that supported me. People didn’t treat me as pitiful, and because of that I was able to let the real me shine through. I reclaimed the person I used to be, maybe not in body, but definitely in spirit. And I realise now it’s all because of footprints.

Just like others footprints made an impression on me during my illness, my footprints were helping others too. I accepted the love and generosity of friends and strangers in Hawaii because my blog had reached them in ways I didn’t know. I couldn’t see that the knowledge I’d learned in my own experiences were helping people just as those whose generosity helped me. Just by listening to a friend, or sharing a meal, I was leaving footprints on the journey of others, just as they leave theirs on mine.

Today as my partner and I concluded our two week vacation, one that I wouldn’t have taken had I not left footprints on his journey as equally as he left his on mine, I had my epiphany. We were talking with our Airbnb host, just as we were getting ready to depart for the airport, and she shared that she had lupus. She shared this only because I shared that I wrote a blog about living with invisible illnesses. Through this tiny piece of information she came to not only understand that she shouldn’t feel alone, but also some references I gave her for support groups. She had no idea the resources that were available to her, feeling isolated by friends and family who couldn’t or wouldn’t understand.

On the plane ride home I thought about my footprints… If I can leave pieces of myself behind, to help or to grow or to love, then no matter how much time I have left, that time was worthy. I have and will continue to make a difference on those who choose to share my journey with me, just as I share theirs.

Our footprints, my footprints, matter…

Personal Purgatory

I’ve been doing a lot of inner reflection lately, and it seems to me that those of us living with chronic illness do a lot of destructive thinking. I don’t think it’s on purpose either. I’m not talking about the inevitable depression and grief that comes with living with chronic disease, that’s a whole other can of worms… I’m talking about the depression we let ourselves slip into.

Rheumatoid Disease is shitty enough on its own, without having added Osteoporosis, Lupus, and Lung Disease to the mix. While I have accepted each of these as they have come, and deal with my diagnosis the best way I know how (smiles and realistic expectations), I find myself under a rain cloud. But it’s a rain cloud of my own conjuring.

There is a point that I think we all go through where we have had enough. The pain has become too great, or we lose support, or medical help, or all of these things, and we start to feel like we want to give up. I’m not talking about ending our lives, but more of an acceptance of defeat. At one point in our illness we accept that it can’t or won’t get better. It seems easier to accept that our disease has won, not only by conquering our body, but also our will. 

I realise that recently I have let myself get to this point. And I really do mean I let myself. At some point my loneliness joined forces with the disease destroying my body, and they decided to get married. And instead of dealing with my illness while trying to stay positive, I let myself slip into depression.

See, most people think we (the chronically ill) keep to ourselves because we want to be alone. When most of the time the reality is that we just don’t want to bring anyone down with us. We keep our feelings, pain, and sadness within, convincing ourselves that it’s better this way. In my case, I like to take it a step further by emotionally cutting myself off from others. I guess my logic is that I don’t want anyone feeling sorry for me, or treating me like I’m broken. But in doing that I end up putting up walls, especially around my heart.

I haven’t been in a romantic relationship in a long time. I’m talking years. Wanna know why?

I wouldn’t let myself. 

In hindsight I now see that my logic was really flawed. Because in keeping people at arm’s length, I not only hurt myself, but others around me as well. I started to use my disease as an excuse to not live my life. Not in the giving up sense, but I did throw away opportunities to have meaningful relationships with some great people because I justified to myself that I was saving them from dealing with my health issues. In truth, I was just building my own personal  purgatory.

It’s taken me a few years, but I’ve recently seen the light. Maybe not the light at the end of the tunnel, but at least a flashlight that will help me find my way. I realise now that letting people in is important. Sharing how I feel is important. It may not always get you the results you want, but it sure as hell is better than keeping it bottled up inside. I need to not let my disease define me as a person, and I have to remember thank don’t have to walk in this life alone.

No matter how many days I have left, mine is a life meant to be shared.  I will climb out of the purgatory of my own making. I will remember I am strong, beautiful, and worthy of happiness.

Its not a competition, but…

I know that I’ve said on many an occasion that I don’t subscribe to the Pain Olympics ideal. I will argue before anyone that this disease is not my own, and that not only do I share it with many, but there are so many other diseases out there that are worse than mine. Or if not not worse, than certainly more rapid in onset and/or life expiration. We unfortunately live in a world where diseases are as abundant as spiders, and often far more scary to deal with.

Its not a competition. No one wants to be sick. No one is going to admit they prefer the never ending pain, rather than living a healthy long life. And I know I’m starting to sound like a broken record, and I’ve probably made this point before… But if one more person tells me that someone they know has a relatively low impact disease and that I couldn’t possibly understand what its like to be sick, I WILL SCREAM.

About a week ago, I was talking with a friend and she was upset because her boyfriend is dealing with vertigo as a result of an ongoing ear infection. He had to take time off work at his construction job because of the dizziness and headaches that the infection had caused. I asked her if he’d been in to see a specialist yet, as I knew ear infections can be quite disruptive if not dealt with quickly. My friend went on in length about how stressed out her boyfriend was, and what a toll this whole thing was taking on him. I sympathized, stating I’d had an ear infection before and that they can be quite horrible to deal with, and that I was sorry he was in pain. To which she replied (to my utter shock), “Well, his is way worse, and you couldn’t understand his pain.”

Really? REALLY?

Look, I’m not trying to be an asshole here, or claim that I have the worstest disease of them all. I’m trying to sympathize and just say I understand. Its not a competition on who had the worst ear infection ever! I’m sure his IS quite bad if he was experiencing vertigo so badly that he needed to take a week off work. I understand that must really suck. Losing rent money sucks.

BUT…

“You couldn’t understand his pain?” Seriously?

I do more things while being in pain than you could possibly imagine. I put my body through things you probably wouldn’t think of doing, because normally you’d just stay in bed and ride out the sickness. My issue is that I can’t ‘ride out the sickness’ because it NEVER ENDS. I will be sick for the rest of my life. I will be in pain for the rest of my life. And because of my diseases, my life will almost certainly be shorter than yours.

I have woken up on a Monday morning and known without a doubt that I wouldn’t be able  to leave my apartment for at least three days. I’ve woken up on an infusion day in so much unbearable pain, and known that no matter what, I would have to get up and get to the hospital for my treatment. I could be screaming on the inside at every step down the driveway, but I’d force myself, because I have to. I won’t go as far as to be petty and say I’d love to trade a one week ear infection for my life, but don’t think for a moment that I can’t understand pain.

Pain isn’t just a physical feeling anymore. Sure, I feel the pain everyday. But its so commonplace now, that it just is. I don’t know what a pain free day feels like. I haven’t had one in almost 5 years. Everyday isn’t a “pain day”. To me, its just a day. Because the pain never leaves. The fatigue never leaves. The struggle of accepting what my life is now never leaves. The fact that my life will most likely be cut short never leaves. Pain isn’t a physical feeling. It just is.

Being sick isn’t a competition. But don’t you dare belittle what I go through, or I dare you to go through it yourself.

 

 

 

Texting Doesn’t Say I Love You 

Have you noticed how texting seems to be the only way people communicate these days? We now live in a world where we feel naked without our cellphones, and texting has become our life line with the rest of society.

 When I was 17, and in college, my mom bought me my first cellphone. I was so stoked about it, because unlike a lot of my peers, I never had a pager which was all the rage in the 90’s. I quickly became quite proficient in texting with one hand, usually by my side, unbeknownst to whichever professor was droaning on at the time. This was also around the same time that I got my first computer, and was introduced to the wonders of the internet. I’d used the web before, but having a personal computer opened up the world of chat rooms, Napster, and instant messaging, that I’d never had access to in the past. Instant Messenger, texting’s online bosom buddy, allowed me to be whomever I wanted when talking online. Without having to deal with social inadequacies and shyness, I could have long conversations with friends and strangers, and in many ways, it boosted my confidence for in person conversations as well.

18 years later, and countless cellphones and computers having come and gone, I feel like our lives have been taken over by something that once seemed so helpful. Not having to have a full conversation with someone just to ask a quick question, was made easy by text messaging. You could avoid a phone call with an awkward acquaintance by just  sending an email. But when did our lives get taken over by shortcuts?

A few weeks ago, my cellphone alarm pinged to let me know it was a close friends birthday. And without even thinking, I punched out a quick “Happy Bday” text to the person, followed by a post on their Facebook page. It wasn’t until I had finished that I realised how very impersonal of a gesture that was. This was one of my closest friends, and all I was doing was sending a text? And it’s not like I didn’t have the time to call…. I’m disabled, living and working at home, all I have is time… I started to scroll through my contacts to call her and wish her happy birthday like a decent person should, but then I stopped. I remembered that they had only sent me a Facebook post on my own birthday, a few weeks prior, and hadn’t called either. It’s not this fact that stopped me from making my own call, but a thought occurred to me that maybe it just wasn’t that important to them, that maybe social media was their preferred way of contact. And so I just left it, opting to do nothing more. 

But the memory of the ordeal has lingered with me for weeks now. I am constantly reminded of scenarios that have happened in recent years where texting has not served me well. One of these circumstances was the ending of a relationship a few years ago. A boyfriend of mine and I were not getting along very well, and after a long night of texting back and forth, we ended our relationship. The very next morning I thought how preposterous it was that we would break up over text. There are no nuances in texting. You can’t see the expressions of the person you are talking to, nor hear the tone of their voice. So much can be lost in translation. And yet, we left it as is, and did not ever try to talk about it in person.

Someone once told me that you are at your most honest when you are drunk, because your inhibitions are lowered, and you speak more freely. I believe this is the same with texting and instant messaging. You aren’t looking directly at someone, so you often say a lot more than you would, because you have no audience. You can hide from rejection, or dislike, or answers you don’t want to hear, because you aren’t face to face. You can’t see the other parties expressions, and that gives you a certain amount of freedom to be who you want to be without instant repercussions.

Social media is a lot like this as well. The personal  page phenomenon brought to us by MySpace and Facebook, have allowed us to be whomever we want to be online. Sure, people see you, but it’s the You that you decide on. You control what pictures you post, you control what personal details you share, and you even decide what comments you write. You have the ability to remake yourself in a sense. Of course, those who know you well, know the truth. So you can’t get away with to many “remakes” of the reality, without getting caught out. 

I’ve often been bewildered  looking at people’s pages that post the opposites of what their  lives are really like. People who have complained of being in dead end relationships to their close friends, end up posting pictures of the perfect marriage online. Or people who are struggling with finances post pictures of themselves purchasing vacations or going on shopping sprees. Why do we do that, do you suppose? Why is it so important to us to show everyone a different reality? Why do we portray ourselves differently online or through text messaging?

And when did texting and email and social media become the only way to communicate? Are we afraid to have real conversations with people? What do we fear they will hear in our voices? The truth? Sadness? Loneliness? Our online lies?

Are we supposed to feel loved when receiving a text message asking how we are doing? Are we supposed to feel supported? This person took five seconds from their day to send me an eight word message, I guess they really care? When did we stop making the time to really check in on each other? When did we put texting and social media before our relationships with one another?

And where will we be in another eighteen years? Will conversations be completely redundant by then? I don’t think I want to know.

The Broken Record That Keeps On Giving

As a gal living with Rheumatoid Disease, I face challenges day to day, often those challenges being the correction of what people think I have, as opposed to what I actually have.  I know, I know, I probably  sound like a broken record half of the time, but I wouldn’t have to if people would just LISTEN the first time round. So here I am today, sharing the differences again… Hopefully this time is the charm…

1) “Oh, you have Rheumatoid  Arthritis? Everyone has that. I think I might have it.”

No. Correction: “Everyone” does not have that. And trust me when I say, if you have it, you would know.

* First off, the main difference between Rheumatoid Arthritis and Osteoarthritis, which is a much more common variety of arthritis, is the symptoms. Osteoarthritis is caused by the eventual  breakdown of joints over time, which is why it’s so common in the elderly. Rheumatoid Arthritis  is an autoimmune disease where your  body’s immune system actually attacks its own joints. These are two different types of arthritis, that provide two very different outcomes on the body.

Osteoarthritis  is the most common form of arthritis. When most people are referring to arthritis, osteoarthritis is typically the form they are talking about. While Osteoarthritis  is known  to affect the elderly the most, it can happen in younger ages as well. It’s based on the wear and tear of the cartilage of your joints, so weight gain, joint injury, work that engages using your joints often, and genetics, can also play a role in getting this form of Arthritis.

Rheumatoid Arthritis, or Rheumatoid Disease, is more common  in women, even more so after the age of 40. But it’s not only limited  to that age, obviously, and also is seen in younger children, known as Juvenile Rheumatoid Arthritis. Rheumatoid Arthritis is an autoimmune disease that causes pain, stiffness, and swelling in the joints. The most commonly affected joints are the hands, wrists, feet, knees, elbows, ankles, and shoulders. But this disease is a double edged sword, as it not only causes pain through the inflammation of those joints, but also affects your body’s organs and immune system as well.

So unlike Osteoarthritis, which causes pain in the joints, and stiffness in movements, Rheumatoid Disease also attacks the body. So on top of pain, stiffness, swelling, and decreased mobility over time, patients with severe Rheumatoid Arthritis also have to deal with decreased immune systems, that make us vulnerable to life threatening illnesses. Our disease also opens us up to bone thinning, which can in turn lead us to Osteoporosis, another disease that I now have because of RA. I have to administer a daily injection into my belly with a sharp, painful needle, to deliver a medication called Forteo into my blood stream. Every single day. And, yes, it does hurt.

Patients can also get heart disease, stroke, several forms of cancer, lung problems, tuberculosis, anemia, and vasculitis, just to name a few. As well as host a laundry list of other issues including, but not limited to, depression and anxiety disorders.

So, please, before  you open your mouth to state that “everyone ” has my disease, or in fact that you have it too, when you don’t, just think about the truth of your statement. Because blurting out incorrect facts to a person with a legitimate disease is beyond frustrating, and tends to make you look the fool.

2) If you exercised more, you wouldn’t be sick.

You know how people cringe when they hear certain sounds? Like nails on a chalkboard, or a metal chair being scraped back on a hard floor? Sounds like that tend to pull an involuntary response from us, a shudder, or a full body tense-up, that leaves us uncomfortable and stiff. Well, that tends to happen to me anytime I hear the phrases:

“If you exercised more you’d…

“If you were vegan or vegetarian, I bet your disease would go away…

“Healthy people don’t get sick, so you’re just living unhealthy…

Really…? REALLY????

Remember how I just talked about not wanting you to look the fool? Well, you might wanna go back and read through that again. First of all, there are THOUSANDS of people who have thought they were living completely healthy, active lives, who’ve turned around one day, and (BAM) they have cancer! In fact I just caught an Uber ride-share a few weeks ago, and my driver told me his sister had just passed away from stage 4 pancreatic cancer. He was of course devastated, but even more so because his sister had no idea she was sick until the very end! She lived an extremely healthy and active lifestyle, taking part in countless marathons and triathlons, and was funnily enough, vegan.

I understand that it is very trendy right now to be vegan, gluten free, vegetarian/pescetarian, wheat free, raw diet,  green living, wonder hippies. I’ve seen the articles, read the magazines, watched the reality shows. I’ve seen the celebrities with their mats in one hand, being photographed on the way to Bikram yoga, with their kale chia smoothies in the other. Everyone is skinny and toned and tanned. Well, I might be too if I had a hundred thousand dollars a year to spend on a personal trainer, personal chef/nutritionist/dietician, have a sun bed in my home gym, and could afford the new Kate Hudson clothing line. Then again, maybe I couldn’t.

I’ve been sick for almost four years now. But truth be told, in that first year, diet and exercise wasn’t a large concern for me. I was still fairly active, going on walks and hikes, and weekend trips to the beach happened more often than not. But I was still eating fast food, and junk food, and basically whatever I wanted. Prednisone had not yet affected my weight, like I had been warned it would, and I was still fairly slim, and curvy.

It wasn’t until year two, and now three, that my weight drastically changed. I developed Cushingoid, also referred to as Moon Face, which meant my cheeks and chin ballooned out, causing my eyes to look sunken in, and everything else to just look fat. I gained 75lbs over the course of two years, that rested mostly in my belly and breasts. And once the weight gain became noticeable I completely switched my diet. I cut out soda, fatty snacks, trips through the drive-thru, candy, and a lot of carbs. I started drinking more water, eating tons of fruit and vegetables, and only eating healthy proteins, and very little carbs. The thing about Prednisone though… is as long as you’re on it, you’re going to keep gaining weight. My doctors have told me I could be eating the tiniest amount of food possible to get by, and be working out hours upon hours a day, but if I’m still taking steroids, I might as well be eating all that junk I gave up. I’m still going to gain weight. Now, will I actually  keep eating that junk? No, of course not. I like my diet now. I like my fruits and vegetables. I like drinking water and tea instead of coke. And I love cooking for myself, which means I control what I put in my body.

I live a pretty healthy lifestyle right now. The other night at my family’s home, I ate a giant serving of Kale salad to start, followed by 2 oz of roast chicken, half a roasted red potato, and 6 spears of asparagus. I was full. And I refused dessert later on as well. Not because I’m dieting, but because I truly did not want it. I was still full from dinner, and didn’t need sweets to end my evening. I’ve learned that I do better “grazing”, eating small healthy meals throughout the day, instead of 3 large ones. And as I said before, I snack mostly on fruits, vegetables, and healthy proteins now. I truly cannot remember the last time I went to McDonalds, or ate a bag of chips.

So to recap… I eat a healthy, well rounded diet, that leans more towards Vegetatian than Omnivore. I get regular exercise when my body allows it, usually 3-4 times a week if I’m feeling good, and 1-2 when I’m struggling with pain. I drink well over 8 glasses of water a day, as well as juice and tea. While I love dessert, I never overindulge, usually only eating something of the sweeter variety 2-3 times a week, and only in moderation. And I take care of my body, meaning I use a fantastic skincare regimen by R+F on my face, I moisturize my limbs daily, and exfoliate dead skin as needed. For a “sick” person, I do more than the average patient in attempts to stay as healthy as possible and not add to the stress my body is already under. So PLEASE think before you speak when you tell me I would be cured if only I lived a healthier life. Because I’m betting if you really knew me, you’d be surprised to learn how very healthy I am, despite my incurable disease. Hell, I might even be healthier than you!

3) You should just go off your meds. I bet you would feel better if you stopped taking so many drugs.

When people tell me this, I have a really hard time with the struggle to not hit them in the face. The rage that consumes me runs deep, that’s how very serious I take this comment.

Going off of pain medication isn’t like the decision to stop taking Advil for your work-related headaches. It’s not like switching to a different multivitamin. And it’s certainly not a decision that can be made on the fly because you’re not a fan of Big Pharma. To be clear, I am not a fan either. But for now, Big Pharma is responsible for keeping me ALIVE.

I have gone off my meds on purpose, twice, in the last three and a half years. And to be clear, I didn’t even stop them cold turkey. I tapered down slowly, per recommended guidelines given by my doctors. However, that didn’t matter. My body freaked out from the withdrawal of much needed medicines. Medicines, that sole purpose is to keep me mobile, that help me walk and live an active life. I stopped talking them, or rather aggressively cut the dose down because I was tired of the side effects. Prednisone, for example, has caused 75lbs of weight gain, and while I remain on it, I continue to gain weight.

I had an appointment with a Neutologist last month, whom told me that as long as I’m on prednisone, I could be the healthiest woman alive, and it would mean nothing. I could starve myself, eat less than 500 calories a day, exercise until I bleed, and if I’m still taking he steroid, I will still gain weight. That kind of fact is hard for me sometimes. I hate looking at this body that I don’t feel is mine. And when I get really down about it, sometimes I think ‘why not just go off my meds?’

But every time I do, I end up in the hospital, with either catastrophic withdrawal symptoms, or worse… to be clear, none of us want to be in the hospital. It’s not like a vacation from reality, or a chance to ‘take naps all day’ like one idiot suggested. Being in the hospital sucks. 

It’s all also extremely expensive. So before you think about commenting on how my life would be better if I went cold turkey on all my meds… I want you to stop and really think about what you’re telling me to do. You are asking me to not only put my life in danger, but also possibly die. And for all of you out there who don’t have chronic illnesses or diseases, none of us “sick people” have a death wish. We actually want to get better.
So yeah, maybe I am a broken record. Maybe I have told you and others many times what is and isn’t okay to say to someone like me. I’m just hoping one of these days it’s going to stick. That one day, hopefully not too far in the distant future, I can have a conversation with someone that doesn’t involve their “great advice”. Because at the end of the day, unless you have the letters MD attached to the end of your name, your “advice” is more harmful than you know. Stick with what you do know. Be a friend. Be helpful. Listen. Read medical journals if you truly want to know about my disease. Read facts that don’t come from Yoga magazine or from your fave celebrities’ hairdressers best friends nutritionist who knows a guy that had a girl who has what I have. Stop talking about what you don’t know, and concentrate on what you do.’you have a friend who is ill, and she just needs you to listen, be kind, be thoughtful, and just be there.

Hands… I only get two, so back off

There comes a time in everyone’s chronic pain journey where they’ve had enough of something. It may be that they are sick of the lower back pain that tortures them daily, or the migraines, or knee swelling. Point is, everyone has at least one spot that’s the worst with their pain condition. For me, it’s my hands.

When I was first diagnosed with Rheumatoid Disease, my hands were where I could really see the effects of the condition on my body. In fact, to this day, if I want to know how bad a flare is going to be I look at my hands. If it’s going to be a bad one, they will be super inflamed, often enlarged by the swelling around my joints. And man will they hurt!

Like today.

It’s actually been awhile since I’ve experienced such an excruciating flare in my hands. After my really bad chemotherapy experience in July, I’ve been dealing with more widespread pain, instead of just one localized area. Truth be told, I kinda hoped that after my body freaked out on the chemo, that the chemical makeup of my body would have changed. So many things went wrong with my body after that experience, so I assumed that since I hadn’t had a hand flare in awhile, that maybe they were gone for good.

It’s nice to dream.

It sucks when that dream bubble bursts….

For me, that was around 4am… I hadn’t been asleep that long, as I’d been battling insomnia for a few nights in a row (another story for another day), and had only just drifted off around 2am. I knew the pain was present before I even opened my eyes. Even my fat ginger tabby knew something was up. Cats are very intuitive and empathetic, and my cats always know when I’m having a flare. This morning, Aureus knew, and had decided to help by backing his furry butt into my face as some sort of kitty cat “feel better” hug. It didn’t quite have the effect I was looking for.

I’ve had my disease for three and a half years now, so I’m very familiar with pain and inflammation. I’ve tried so very many different medications, treatments, remedies, and was of thinking, in order to get rid of this awfulness. But some days, like today, the anger really takes over and I get to thinking, “Why body why?!”

Having pain in your hands is the WORST. You really take for granted how often you use your hands, and how difficult life can be without full use of them. Right now, my right hand is swollen to the this thickness of a tennis ball. I kid you not, that’s how far my hand is. The pain runs deep too, all the way down to the bone, causing a great ache.

The pain is so severe in fact, that you can’t use your hand for everyday things. Need to turn a door knob? Sorry, not going to happen. Want to pick up a book or a mug of tea? Well, you can’t, you don’t have enough strength. Want to write your blog with your stylus? It’s going to have to be voice dictation today, your hand can’t even grip a pen.

I only have two hands! If they’re wounded or sore or broken (gosh I hope it’s not broken), well then I’m just S.O.L. And that’s just another painful, and beyond frustrating complication of having this disease. You’d think your body would let you catch a break some time. I mean you only get TWO HANDS. Let them live pain free please!

Come on body, do me this one favor. Pretty please?

Faking It

The other day I read an interesting story on Arthritis.net about “faking symptoms”. Truth be told, at first I was a little annoyed that it sounded like someone was talking about exaggerating their symptoms because I feel like I face the stigma of that every day. People that I come into contact with are constantly second guessing what I tell them, not understanding the severity of my disease because of how I look on the outside. The constant annoyance of having an ‘invisible illness’, it’s exhausting.  Everyday, even if I’m having a terrible, terrible pain flare, I look completely normal (besides the obvious Prednisone weight gain that is). The only way you could truly see if I was very ill is if I show you the pain on my face, or if I’m limping, or if you caught me during a bout of nausea.

Back to the online article.

So as I started to read this article on ‘faking it’s I realised my initial thoughts on it were wrong. The woman writing the story was indeed talking about something I find myself doing all the time, faking symptoms to make people thing I’m better than I am. I guess it stems from my pride, from not wanting to appear weak, or vulnerable, or small. But the woman was right, I do in fact fake it with family and friends all the time, just not in the way they’d think.
A good example of this is just the day before yesterday, Thanksgiving Day. I woke up that morning around 5am already crying. My pillow was wet with tears, and the second I tried to move I knew why. I was having an excruciating flare. I couldn’t even keep from crying out as I moved from my bed to the bathroom. Every step felt like my feet had been bashed in by a sledge hammer, Kathy Bates of Misery style. My shoulders felt dislocated, my hands crushed into a thousand pieces, my rib cage heavy and pained, as if the very bones were a cage for 50lbs weights that were tossed around as I attempted to move. I worried about how I was going to accomplish helping my sisters cook the big thanksgiving feast.
That’s when the faking it started. I cried while making myself a pot of tea, everything taking longer as it was agony to move at all. Then it occurred to me to make breakfast for my family since we had to get up so early. And sure, it took me quite a while to accomplish it as the pain was brutal, but an hour later Apple Croissants were packaged into Tupperware to take to my dad’s house. The mere act of that alone was agonisingly painful, and I’m not sure why I even put my body through it. The ordeal of trying to open the crescent roll tube was a sobbing matter. So why? Why didn’t I just stay in bed for an extra hour and rest and not aggravate my pained body?
Pride. I didn’t want to be seen as vulnerable or weak or pathetic. I wanted to be seen as strong and capable, someone who can overcome the odds of a severe and debilitating disease, someone who was winning.
Later at my family’s house I continued to push myself despite the pain. Swearing I could do the work even though every step, every movement, was agony. They asked how I was and I’d shrug it off with comments like “I’m fine” or “Don’t worry, I can push through”.
I took a nap in the early afternoon to regain composure for the coming evening celebration. As soon as the door was closed and locked I could be the real me again. Wipe the plastic smile from my face, let the exhaustion and pain show. I lay on the bed and slowly registered every pain, every feeling of brokenness, and continued to do so until the exhaustion took over and I passed out. But not even two hours of rest can expel the pain. Eventually I had to rise again, shower, change, and paint my face with a look that I hoped would convey “Everything is fine”.
It was only much much later, when I was home again and in bed, staring at the ceiling as silent tears slid down the curve of my cheeks, did I wonder why on earth I had put myself through that.

I’m not helping anyone, including myself, when I “fake it”. If anything, I am the cause of people thinking I’m faking it for real all those other times. My pride is damaging my credibility as a person with a severe illness. If people always see me smiling and saying everything is fine, well of course they will be suspicious of any real pain I experience. They won’t understand why I’m fine one minute and in pain the next. Because I’m showing them that it’s painful sometimes and other times it not. But that’s a lie. It’s always pain. I’m always in agony. I always hurt.
If I saw someone walking normally one day, and the very next I saw them limping and asked ‘hey what happened?’ and they told me that in fact both days they were in pain, but they were only showing the limp today, well I’d assume something fishy was going on. And that’s basically what I’ve been doing.

In my pride, I’ve not wanted people to see how truly sick I am. Last night as my mom and I discussed it, I came to the root of my problem. Yes, it does have to do with pride, and not wanting to constantly be seen as ‘sick’, but it’s also something else entirely. Something I hadn’t realized before, but was so painfully obvious.
I don’t want to be seen as the ‘sick person’ not just because it makes me weak, but also because it excludes me. Being labeled as ill automatically puts me into this group where I don’t get included anymore. Don’t fight me on this, because it’s totally true. I’ve received less invitations for group activities like beach days, bbqs, dinner parties etc. I rarely get asked out on dates anymore, which was never a problem in the past. I’m not the friend that people automatically turn to for a fun addition to an activity. And that always used to be me.
Once I realised this phenomena was taking place, I think that’s when my bout of ‘faking it’ really came to life. It was to counteract boredom. If I showed everyone I was better than I was then I would be included again. Sure enough, I was part of the laughs and stories and jokes in the kitchen on Thanksgiving. I’d been invited recently to more group social activities. I’ve even had a date recently. All because I tucked away my illness for no one to see. In a sense I hid the present me to bring back past me for everyone’s enjoyment. Everyone’s enjoyment but my own that is. Because it is exhausting hiding my pain. It’s painful hiding pain. What the hell Christine? What are you doing?

So now that I have come to terms with the stupidity of my actions… I’m stopping them. It’s time to just be me, pain and suffering and all. And if it’s confusing suddenly seeing me in a bad state all the time you can just tell yourself I was like this all along, that I hid it for your comfort but that those days have ended. I only work for myself now.
My exhaustion, my pain, my agony, will show on my face as I live it. As I experience it, so shall everyone experience me. The days of faking it have ended. I am thankful to that woman who wrote the article and brought my silly actions to light. The case of the Fake Christine has ended. Now what you see is what you get. Sorry if that’s depressing or hard to handle, but feel better in knowing it’s far less than what I deal with every minute of every day.

 

 

 

Thank you for reading my blogs and if you would like to help my fight against Rheumatoid Disease, please visit my donation page:

Christine Lilley’s Life Fund

 

Friday Morning

3:49am
My cats are meowing. I can’t see them because my eyes are still closed, but I can hear them. Please, please, please don’t be a bug. I open my eyes at the exact moment that my body registers the pain.
OMG. This is a 15/10 at least.
Damn, I need to pee. This is going to suck.
I push the bed covers off with the back of my hand. My fingers are swollen and stuck in the position of a claw. They look deformed and I shudder at the thought that those days are fast approaching. I push off the bed and cry out in pain as my knees scream. I hobble to the bathroom and take two deep breaths in before sitting on the toilet seat. My knees are purple and huge.  It takes me ten minutes to psyche myself into standing up again. The tears fall as I hobble back to bed.

4:05am
I’m going to take my morning meds now. Maybe they will kick in while I finish sleeping and I’ll wake feeling good. Maybe.

5:30am
Aureus is on the bed next to my head, meowing. He wants his morning can of wet food I assume. I open my eyes and the pain is still there. Sorry Kitty, Mom isn’t getting up for that just yet.

6:18am
I need to pee again. Damn it. Pain is still bad, maybe a 13/10. Why haven’t my morning meds kicked in yet?
I stumble to the bathroom, crying out in pain as I sit on the seat. This time though, I can’t get up. The pain is too strong. I sit there for several minutes, breathing in and out, in and out. I try to stand up and come crashing down.
Tears.
I lean my forehead against the wall, taking deeper breaths, knowing I’m just going to have to get up, no matter how bad the pain is.
I stand. I scream.
God I hope my neighbors didn’t hear.
This time I hobble to the kitchen and plug the cats water fountain in. I fill their bowl with dry kitty food and hobble back to bed. I fall in, not bothering to cover myself and pass out in exhausted pain.

7:58am
My body must know I can call my Rheumatologist now, his office opens at 8. I must see him today. Only he can tell me how to get through this pain.
The nurse on the phone tells me he has no availability to see me. I ask what to do and she says she doesn’t know.
Well, thanks, that’s very helpful. She says I can come next week. Well, gee, I hope I’m still alive next week. Because at this moment it feels like my body is shutting down.
I take another 2.5mg of Prednisone. I just need to be able to move. Please, please kick in soon.

8:30am
I’m so thirsty. I hobble to the kitchen but I can’t open the fridge door. The magnet is too strong. Instead I attempt to open a bottle of water from on top my fridge instead. I can’t. I have no strength in my fingers. Shit.
I go for the fridge again. Screaming in pain and frustration I get it open. With two hands I pull the carton of milk out, praying it doesn’t slip between my grasp. I pour a glass of milk and get a straw to drink it with.
Finally. Thirst quenched.
God I’m hot. And itchy. I wonder if ill be able to wash my hair in the shower today. My hands still stuck like claws. It’s hard to squeeze the shampoo bottle on days like this.

9:05am
I must have fallen asleep again. Why does everything hurt so much? I have to pee again. My knees are so mad at me.
Tears.
My cats meow at me from the floor. I try to stand but fall back down on the toilet seat again.
Tears.
I need help.
This is too much pain for me to handle.
I need help.

If you’d like to help me, please visit my campaign page at:
Christine Lilley’s Life Fund

Broken

Broken.
That’s what my body feels like.
Like every single bone has shattered, and the pieces are just bouncing around inside my skin.
Every movement is an excruciating practice in immobility.
Standing is impossible. My feet feel like they are made of broken bones, pushed together as if in a sand box with no escape. Each step worse than the one before.
My shoulders feel dislocated, my elbows cracked. If I move my arms above my head I can almost feel the pieces rubbing together, mocking me with their torturous pain.
It all feels broken.
My hips laugh at me as my whole body shakes in a desperate attempt to get comfortable. They mock me as I feel bone grind against bone.
My hands look deformed. Each finger swollen beyond recognition, purple and distorted. Once long and slender, all they look like now are the broken tools of something that once was.
I cry. And it hurts. The broken feeling bones shake under my skin as I take deep breaths attempting to regain control of this body that doesn’t feel like mine.
I feel broken.
It feels broken.
I am broken.