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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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.

The Relief of Belief

For my fellow comrades who have lived through the trials and tribulations of trying to make the world see us as we truly are, sick and in need of help, you understand more than anyone how hard this life is.

We didn’t choose it. Chronic pain is not something we asked for. Invisible illness isn’t something we wanted. Autoimmune diseases are not a life choice. And yet everyday we are treated like this is our fault. Like we brought these horrendous ailments on ourselves because of our diets, our amount or lack of exercise, our unwillingness to just “get over it”. We are judged, shamed, treated with prejudices, mocked, and generally frowned upon because of one simple fact: we are sick.

There is not one day that goes by where I am not asked why I’m not doing more to help myself. I cannot explain the depth of my exhaustion and exasperation at the ineptitude and rudeness of these individuals. I do not know how much longer I can continue to be polite and forgiving towards those who push their unsolicited “advice” on me. I have been sick for over three years now with this incurable disease, and in this time have met less than three people who share it with me. These three people are the only people, besides my doctors and others with similar chronic ailments, that are permitted to give me advice on how I should take care of my body.

As I’ve stated countless times before, having experienced a migraine is not the same as experiencing daily chronic pain. Neither is being tired after a long day at work, the same as being too exhausted by your disease to get out of bed. That being said, No, I don’t feel lucky that I get to take a lot of naps. I am happy that your cousin’s best friend cured their cancer with herbal tea, but I’m sorry, that’s really not the same thing as what I’m going through. I also understand how much You hate BigPharma, and how they are ruining the world with their drugs and high price points, but you have to understand that I can’t just stop taking my medications. I could die. Seriously.

 Is that fact something you can at least wrap your mind around? Or is my life less important than your beliefs?

Speaking of beliefs..

When I first filed for Social Security I had to live off the belief that there was someone out there that would see me for who I am, and what has happened to me, and help me. Little did I know how hard that concept would be for people. How cold hard facts placed right in front of someone’s face could still be pushed aside, ignored.

Initially, not only was my disease not taken seriously by the Social Security Department, but also by friends and family who could see my ailments first hand. How could anyone dispute what their own eyes could see? My swollen fingers weren’t supposed to be the shade of eggplants. A healthy woman in her early thirties shouldn’t cringe when she stands up from a chair. And even if the physical sight wasn’t enough, shouldn’t the fact that trained professionals were prescribing me STRONG medications be a clue??

Two years of chronic pain, heavy medications, failed treatments,  and sweat and tears… And in those two years I was denied by the Social Security Administration three times for “insufficient evidence of disability”. Ridiculous. Three pointless denials before I broke down and hired a lawyer to save my own sanity. And still another year followed slowly before I was even given a chance to plead my case to a live person, and not a stack of papers.

And tell me why my illness, my disease, is looked at by one person, and that person decides if I’m sick or not? The system scares me, to be honest. Three years of agony, and my financial and medical future is decided on by one person whom I’ve never met before. Someone who hasn’t seen my daily struggle, can’t see me when I’m in the ER every month, isn’t with me as I take my thrice daily handful of pills, and wasn’t by my side in March when I lay on the bathroom floor unable to move.

The idea that something so important is based on a decision of one person is scary. But all I needed was one person to believe me. Just one. One person would seal my fate, no matter what.

On May 11th, 2016 a letter was written to me. It’s contents were the decisions of one man, and one man only. My hands shook as I opened the envelope, and I can honestly say that I’ve never felt such paralyzing fear in my entire life. Three years of waiting. Three years of wondering why people could not see what was happening to me. Wasn’t it as painfully obvious to the world as it was to me?

Letter in hand, I read the text. And then I read it again. And then again. Tears spilled over my lower lids, and I hastily brushed them away, only at that moment realizing my very public placement inside my favorite coffee shop.

Notice of Decision: Fully Favorable

Three years. Three years for one person to finally look at me and decide I needed help. No, not decide. Know.

And following this statement of decision was a declaration of why this one person came to the conclusion they did. It’s a very long declaration, so I won’t be quoting the whole thing. But there are a few lines that really spoke to me, and led me to greatly respect the person who wrote them…

“I give great weight to these findings as supported with the overall medical record and findings of the claimant’s Rheumatologist, and agree completely with the testimonials given by (said) doctors.”

Finally. After three years of appeals, and chasing down doctors notes, labs, and medical records, there is one person in the Social Security Administration that sees how sick I am. And not only sees, but understands what I’ve been through. The relief of that acknowledgement was immeasurable. And to make it even better, (not that it was necessary to, but gosh was it wonderful anyways) a personal testimony of how my case was wrongly denied.

“….the State agency consultants did not adequately consider the claimant’s impairments, and rendered their opinions prior to completion of the medical record…”

Upon completion of the letter I initially thought I’d be angry at the fact I’d been wrongly denied for three years prior to my approval. But I found instead that I was only elated that I had finally found peace. Peace through the fact that the one person that I needed on my side, came through for me. I cannot quite put into words what it feels like to finally be believed. To say it’s a relief would be a gross understatement, but for now, it will have to do. 

Three years for someone to believe I was truly sick and truly needed the help. They made their choice based on extensive medical record and the testimony of my doctors and myself. That’s what they needed to determine their ruling. What is it, do you think, that my friends and family need to make theirs?

To be clear, I am extremely grateful that after three years a judge has finally ruled in my favor regarding Social Security benefits and Medicare. I will however not be receiving said benefits for quite some time as told to me by the administration. I am lucky to have gotten them, yes, and now get to play the new waiting game of When do my benefits start? I’ve been told I can look forward to them in the next six months. Phew, long time! And because of this extensive waiting period, my donation page is still open for financial help and support. I thank everyone who has been a part of my journey for Social Security Disability help!

For financial support: http://www.gofundme.com/sixthousandsteps

Merry Christmas Arthritis

Merry Christmas Arthritis.
I see you’ve started celebrating early this year.
I thought with the holiday you might have wanted to sleep in, or perhaps take a day off completely.
It must be tiring working so hard day in and out.
Making sure my flesh is inflamed in all the right places, breaking down my joints, figuring out new ways to destroy my body from the inside out.
Sure must be exhausting work.
That’s why I thought you might like to take the rest of the month off.
Surely you deserve a break. 
Put down those chronic pain inducers, your crafty invisible illness disguises, and just relax.
Have an eggnog.

As for me…
Well it would have been nice to wake up on Christmas Day pain free for once.
Hell, I would have even taken a 5/10.
Oh, don’t you worry, I wouldn’t have spilled the beans on you. It could have been our own little secret.
Just between the two of us.
You could still do it you know, it’s not too late…

Ease up on the inflammation throughout my body.
Turn a blind eye, and stop the purple bruising around my knuckles and feet.
Look the other way as you pull the swelling from around my joints, making it possible for me to walk without limping.
What a great Christmas present that would be.
Turn my hands back to normal so they can move again without looking deformed and useless.
Drain the liquid from around my knees so I may bend down to hug my family and friends without holding back screams.
Ease up on the pounding inside my head.
Today of all days, let me feel happy on the inside.

Today.
Just this once.
Please, Arthritis, please.
Let me enjoy one normal day.
Please.
Let me be pain free.
It would be such a lovely gift, one that I would cherish for a whole year.
Let me have a day without wincing, a day without tears, a day of fresh steps forward, and none back.
Let me have my Christmas.
Please?
Please?
Are you there, Arthritis?
Can you hear me?
Please.

Why me?

It’s not genetic.
That’s what they tell me.
So this didn’t come from someone in the family. I can’t lay blame on an old relative that died years ago from an unknown anomaly that was probably arthritis.

So then where? I don’t understand how one morning when I was 27, I suddenly woke up with this debilitatin))g, chronic disease. I don’t understand how it gets worse with every passing day.
I don’t understand how some days I can wake up and look and feel normal, free. Where does the pain go on those days? Where does it hide? Is there a secret spot in my body where it lays dormant? And how do I banish it there forever?

Yesterday I was at a functioning 5/10. That’s what my life breaks down to these days, numbers and scales. How I’m feeling, how I’m functioning, one out of ten. However, lately it’s more like 15-20/10. My doctors say it’s can’t be like that. That the worst is always just 10. Well, no I’m sorry, that’s incorrect. Because what 10 was yesterday, is now only a 6 compared to today’s pain. It’s not accurate for me to call it 10. They don’t understand that yesterday’s 10, even last week’s 10, is not even close.

I’m just wish people could feel my pain, only for a moment, and understand what I’m dealing with. The excruciating pain in my knees as I try to climb out of bed… I never get used to how terribly bad it is. The involuntary yelp that escapes my mouth as the flesh around my knees and feet burn with pain. The quick second of relief I feel as I lean my head against the wall, a moment to rest before moving on.

I had a migraine early on last night. My head throbbed as I lay in my darkened bedroom with the fan on, willing it to dissipate. Luckily, I fell asleep just after 7, the migraine fading with the approach of zzzz’s. But then I woke up just after midnight with a new onslaught of pain.

I’ve been awake ever since. Every single joint on my body is inflamed, puffy, red. Every movement causes horrible pain. My bones feel broken. My muscles and flesh burn with searing pain. Everything hurts everywhere. Moving is brutal. I’ve been crying for hours. You say my pain must be 10/10, Doctor? Wrong.  It’s 20/10. Deal with it. 10/10 would be a walk in the park. I’d love a 10/10 just this once!

I especially don’t understand how my doctor told me today that the next month is only going to get worse. You’re my Rheumatologist, please just this once, fix me. Give me something that will keep me from being bedridden. Do something for me, PLEASE. Stop this pain, I beg you. Fix me. Fix this. Make it go away. Make it tolerable.

I don’t want to be in pain anymore. Give it to someone else, I beg you.

Why me? Why?

To ER or not to ER, that is the question

One of the worst parts of being sick sometimes is knowing whether or not I’m having an emergency. Because I have such a high pain tolerance now due to my Rheumatoid Disease, it’s hard to judge if my pain is on an emergency level or if I should just suck it up. Years ago, I had to be in a lot of pain to go to the ER because it meant I was going to get a huge hospital bill. Having insurance through the state gives me leniency in that department but I still don’t want to go if it’s a waste of time.

A couple of months ago I was having bad abdominal pain and decided it was an emergency. While the reason I went in did not pan out to more than just pain due to my disease, one of the many scans they gave me was how we found the cancer. And today my PCP joked about how every time  we go to the ER we find a new diagnosis. That’s an unfortunate reality to be sure.

So is my strange back pain right now cause for a trip down the road? My PCP would want me to do a checklist to see what’s definitive.

Shortness of breath?

Sharp pain in abdomen or side?

Fever?

Nausea or vomiting?

The list goes on.

So… am I having an emergency? Not sure… And even Hypochondriacs Are Us aka WebMD isn’t very helpful today. It hurts, I know that. But does it hurt more than my RA? Can I wince my way through it?  Not sure…

I just hate to go in there and waste time if there are people there with legit emergencies. Like car accidents, broken bones, heart attacks.

I guess it’s a waiting game. My favorite type of game… ugh.

The pain you cause me

I’ve lived with chronic Rheumatoid pain for two and a half years now. To say that I’m familiar with it would be a gross understatement. It’s a part of my life in the same way that coffee is to a barista. We go hand in hand. Where I go, pain goes. Where pain goes, I follow. That’s probably a weird way of looking at it, but when you’ve been living with that evil twin of yours for so long, it starts to change your outlook.

Everyone who knows me knows how ridiculously optimistic I can be. I’m a glass half full kind of girl. I’m the person that was told she had cancer and promptly asked her mom for a chocolate sundae from McDonald’s. (For those of you who are unaware, McDonald’s hot fudge sundaes make everything seem better.) It’s true that I may internalize a lot of my emotions, and I’ve gotten much better about not playing stovetop jenga. But as stated before I can’t always be strong for everyone. I break down too. Just because you don’t see it happening, doesn’t mean that it’s not. It just means I’m really good at hiding it. And FYI, that doesn’t mean I’m lying, or keeping the truth from you because I’m secretive. It just means that you don’t need to know about every single time I have a sob session in my mom’s car, or when I have an anxiety attack in front of the nurse putting the IV in. That’s really more on a need-to-know basis, and I deem that you need not know.

I’ve been in a lot of pain in the last two months. I’ve been trying really hard to hide it. I put it in a box, then taped it up with duct tape, then painted the entire thing in super glue before wrapping it in several layers of chain mail, and then weighing it down with lead bricks before throwing it into the Mariana Trench. It’s resilient though. There’s a chance it made friends with some deep sea beasties down there and they are helping it come back up Abyss-style…. those bastards.

My therapist told me to bury it. Every one of my friends told me to bury it. And the family members who treat me according to the definition of “family” have told me to bury it. But see..  it’s hard to bury the kind of pain that has haunted you your whole life. No matter how much you tell yourself that you’re better than this, that you deserve better than this, it seeps into your brain anyway.

I made a decision two months ago that I deserved more. I made the decision to be a mature and rational adult. To not let petty tricks and condescending insults ruin my life. I wasn’t going to let degrading words and offensive behaviors have any place in my world.

It was a hard decision.

Because even though I knew those behaviors were wrong, and that no one including me deserved to be treated that way, it’s painful to give up on someone you love.

You shouldn’t have to say goodbye to family if they are still walking the earth. But even more so, you shouldn’t have to have an escape route for being around people who have only ever had words of discouragement for you. You shouldn’t have to pump yourself up to be around someone in case they are in one of their shaming you moods.

So in the end, I don’t know what is more painful for me… The hurt that their words and actions caused, or the fact that I could no longer handle it.

No matter what, no matter if I chose to let it continue or not, I would and will always be in pain because of it. And when I look at my life, my disease, my cancer, and I see what little left I have to be happy about, I get so mad at that pain.

How dare you. How could you cause so much mental pain to someone when all they have ever done was try to make you happy, to impress you, to win your approval. What is so wrong in your life, in your heart, that you see a sick child who’s in pain, real physical pain, ALL THE TIME, and instead of helping, instead of just leaning over and giving a hug, or just one word of hope or encouragement, you instead cut them down? You shame them. You belittle them. You tell them they don’t deserve your trust, your love.

That pain, that overwhelming hurt that I have been feeling for the last two months isn’t radiating from my wrists. My knuckles and purple fingers seem easy to handle. But this pain you delivered to me on purpose, I don’t know if a pill will fix that. I don’t know if a hundred sessions with my therapist would fix it. There’s no remission for this kind of pain.

It’s the pain of knowing you’re not loved. It’s the pain of realizing it after all this time. All these years of lying to myself, hoping you will change, hoping you will wake up one day and remember that I’m here. That I’ve always been here. I just want you to see me. And not insult me and call me names. To not look at me in disgust. To give me a hug when I tell you I have cancer. To come to one chemotherapy session and hold my hand while I’m scared. And not give me some bullshit reason on why you can’t show me your love, or why you won’t support me in my illness because your immature feelings over your 30yr old divorce are keeping you from being a father.

It’s the pain of wanting a Dad, and realizing that I have none.

For those who are willing to help love and support me please visit my donation page. Every little bit helps.

Christine Lilley’s Life Fund