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.
Lately, I have been really feeling the solitude that my illness has wrought on me.
I am aware that I am emotionally not alone. I know that I have friends, and family, and a fairly large support network of doctors and medical professionals. I know that if I was having a bad fatigue day, a friend would be just a call away to come over and lend support. If I was having bad pain, and needed assistance bathing or eating, my mom would be over as soon as she could. If I was stuck in my head about the severity of my disease, I could call my therapist and we could talk through my struggles with my reality. If I just needed a friendly face, my sister is available for a video chat and emotional support. I am not alone emotionally.
One could even make the argument that I am not physically alone in my illness either. Over 1.3 million Americans are affected by Rheumatoid Arthritis, and it affects almost 1% of the worldwide population, according to the latest statistics from rheumatoidarthritis.org. As well as millions of others whom suffer from countless autoimmune diseases, chronic fatigue, and chronic pain. Yes, we all share a common link in our fight against invisible illnesses.
But no one can say they suffer from exactly what I do. No one else out there can say they are affected by the exact same diseases and illnesses that I have, in the exact same way. Because despite our common threads, we are all fighting our own battles within our bodies. No two people suffer the same way. We are as individual as every drop in the ocean, and that can be very isolating.
Over four years ago I was diagnosed with Severe Rheumatoid Arthritis from the get go. That alone was a tough struggle for me as I felt like I wasn’t given time to even get used to the searing pain. One day I just woke up and it was there, and its never left.
A year later I was forced to stop working by my employer and put on Temporary Disability Insurance, before eventually being officially “laid off”. By that point I was walking with a cane, and taking very strong opiates to calm the pain that I felt in every joint in my body. With a heavy unbelieving heart, I filed for Social Security from the Federal Government.
A year after that I was diagnosed with Severe Osteoporosis, my doctors telling me my bones tested like those of an eighty year old woman, and not of a woman of thirty-three years, my actual age at the time. Know how I found out about the Osteoporosis? By receiving a bear hug from a friend that cracked my apparently brittle ribs. Yep, that’s right….a HUG.
Within six months of the Osteoporosis diagnosis, I was sent to see two new specialists, a Cardiologist and Oncologist. After a biopsy of my esophagus, a tumor was found to be benign, but I had signs of early stage Lymphoma. I’d also started having chest pains congruent with Pericarditis, a heart condition attached to Rheumatoid Arthritis. New medications followed, as well as a mammogram, an MRI, multiple x-rays and CATscans.
Eventually, due to the inflammation in my body, and my weakened immune system, I landed in the hospital for a severe Cardiac event. It resulted in my being placed In the Intensive Heart Care ward at Queen’s Hospital. During my time there I suffered through Severe Pericarditis, including three minor heart attacks. I was thirty-four years old.
My doctors told me if I got any weaker than I was, and if they couldn’t find some medication that would work on calming my inflammation that I wouldn’t make it to my sixties. Truth be told, I was given a hopeful ten years.
For a change of climate, and pace, I made the decision to come to New Zealand, where I am a citizen, in early 2017. I thought with a different atmosphere, and medical system, that perhaps I could finally find a way to extend my life. By March of this year, no medications had worked for my diseases, and I was getting increasingly worse. My body was either intolerant of the medications available, or allergic to them. It felt like time was catching up to me. I hoped that somewhere out there beyond the ocean was the key to my mortality.
By June of 2017, I had already started a new form of chemotherapy medication for my disease that appeared to be working for me. Physically I felt less pain, and had more pep in my step. I was starting to be able top exercise again, and I had lost a lot of the steroid weight. So, when I met with my Rheumatologist after a series of tests to check my condition, I was feeling very hopeful. It was then that I was informed of my new diagnosis’ of Lung Disease and Lupus.
There are times when I can feel so very small in this world. Like a drop in the ocean. The solitude of my illness can be so overwhelming. No one will ever quite understand what I am going through, or how this feels. No one can tell me they know how hard it is to wake up sometimes knowing that your own body wants you six feet under.
I don’t quite understand how these things work, but I do know that it pretty amazing that I have not completely fallen apart by now. There are days where I can wake up and not be fully assaulted with the gravity of my situation. I can have a shower, get dressed, and face the day, rain or shine, with a smile on my face. I can see my mom, or friends, or just take a walk and feel happiness in my heart.
Then there are times where I look in the mirror and wonder when my last day will be. I wonder what awful thing my body is doing today to destroy itself. I can lay in bed for hours staring at the ceiling in silence. No tears, no anger. I contemplate my mortality and the awful unfairness of my life, like I’m watching an old movie with no sound. Days like that I lay there and contemplate my life as if I were a drop in the ocean. I wonder what it will feel like when I am swept away by the current and I have let go. Today is not that day.
But it will come. Sooner than I would like.
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!
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?
Blackness. Or maybe it was all a bright white. Maybe there was no color at all. Just silence. Maybe that quiet seemed like it would never end.
All I could concentrate on with pain. It seemed like pain was all around me, infiltrating every bone in my body, every piece of flesh. It was so dark and solemn, everything seemed so far away and out of my reach, and yet it was deafening in the darkness.
Where was this place that I had been brought to? Had I closed my eyes and found the place that I would breathe my last breath? Was this the gate that I was meant to cross? How did I even get here? How did any of us get here? Was I meant to be here at all?
Noise. Shouting, machines whirring, everything seemed so loud. It was too loud. The pain hurt. The noise hurt. I just wanted everything to stop. I was ready for it all to stop…
Vision blurred. I saw people running around me, they’re fuzzy outlines making no sense to me as my eyes opened and closed. The pain. The pain was deafening. I just wanted it to stop. I was ready for it to stop. I just wanted it to stop.
I close my eyes, and left them closed for a while. I opened them again, blurred lines still running about… I closed them. Open. Close. They moved with the time of the beeping machines around me, alerting people to my heart rate as it slowed, slowed, slowed…
Finally, the pain overwhelmed me all at once. My breath stopped, my arms went limp, my body had decided… My eyes closed and all I saw was white. It was everywhere. And I was everywhere. I just wanted everything to stop, and it did. But only for a moment.
Only for a moment.
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
Today is Mother’s Day.
This morning, as I have done every single other Mother’s Day since I was old enough to understand, I contacted my mom and wished her a very special day. Then I called my step-mom nd wished her a happy day. And finally wrote a post on my social media pages to all the fabulous moms I know, wishing them a Happy Mother’s Day.
And then I sat back against my pillows in bed, and cried. I’d barely put my phone down on the bed before the tears spilled over my lower lids, streaming down my cheeks.
I should be used to this. It’s the second year in a row now that I’ve had to deal with the inconvenient truth of my predicament. It’s not like Mother’s Day is the only day I think about the fact that I can never have children. I think about it all the time.
I think about it whenever I see kids with their moms, especially when it’s little brunette girls that remind me of myself. I think about it when I hear a baby cry. I think about it when I see children’s clothing in department stores, and advertisements on tv for toys. A day does not go by that I do not think about the fact that I can never give birth myself.
Unfortunately, the nature of my disease and it’s severity makes it extremely hard for me to healthily have a child. Can I technically give birth? Yes. Should I? No, I really shouldn’t. Could it harm or kill me? Very much so, yes.
See, the issue is the chronic pain. I could have a child normally, through childbirth, but only if I go completely off my pain medications. Also my Osteoporosis medication, and depending on what I’m on for my Rheumatoid Disease, perhaps that as well. If I have no drugs in my body, then of course I could technically have a regular pregnancy. Technically, being the key word. See, if I go off all my medications then I would be bed ridden, unable to move at all due to excruciating pain that never ever ends. I would be subject to many illnesses because my immune system would crash, and because of the immobility I wouldn’t be able to exercise at all. So really a “healthy pregnancy” would not be on the table.
I’ve read that for some people with my disease, or ones like it, have had regular pregnancies and or childbirth because their diseases went “dormant” for 9 months. But since this hasn’t been medically proven, and has only happened to a small minority of patients, I wouldn’t put my body in jeopardy like that on the hopes that I get “lucky”. I’m never the lucky one. In fact, most of the time I’m the anomaly that gets all the weird and rare side effects. The point is, I wouldn’t put my body, or child, in jeopardy like that.
I met a girl a few years ago that had a child, whilst having a pretty aggressive strain of Lupus, another autoimmune disease that affects the whole body. She was lucky throughout her pregnancy, being one of that minority grouping whose disease went dormant for the duration. But her child was born with scales. No, not the fishy kind you’re probably thinking of, but more of a horrible skin condition. The baby was covered with patchy, flaky skin, that was red and rash-like, covering her whole body. Luckily, it wasn’t a fatal condition, but the baby had to be kept in an incubator for months, enduring multiple daily tests and treatments. The baby was able to go home after four months, and luckily there wasn’t too much scarring, but… to put your child through that.. I mean I know doctor’s must have warned her about complications of pregnancy due to the nature of her disease.
I guess it’s all about personal choice. But for me, even if I was willing to endure unending excruciating pain, and had the reassurance that said pain wouldn’t kill me, I would still not risk the health and life of my potential child. That’s my choice, my right. It sucks, but it is what it is.
Now, yes technically if I really wanted to be a mother there are other options available to me. I could adopt, though it’s doubtful with the severity of my disease that they would choose me as a capable parent. I certainly couldn’t raise a child on my own, so I would need to be married, and have a support system. Surrogacy is also an option, but I think it would be really difficult for me to watch someone go through the pregnancy of my child. And there’s still the issue of needing a husband for love, support, and of course, sperm.
Plus my clock is ticking down. No, not that one. Not the baby clock. That one has been ticking on and off since I turned 25. And two years ago I even went to a fertility specialist to see what my options were regarding my disease and age. I know my options, very limited as they are. I mean my life clock. A couple of months ago I went through a patch of heavy depression. I was hung up on the thought of how much longer I had. My disease, being so severe and chronic, was starting to worry me in the sense of time I had left. And so, despite the strong objections of one of my doctors, I set out to figure out an estimate of my time left on earth. Through research, my medical records, and the testimony of a very reluctant doctor, I was given an unofficial “estimate”.
I had a nervous breakdown and sobbed for a week.
Well, having a child of my own was now definitely off the table.
I would have to be accepting of my adorable kitties being my babes. Not hard, since I love them as much as I love my human family. And in a sense, I really am a true mother to them. I feed them, clean them (or rather their bathroom), play with them, nurture them, and give them unending love. I’d starve before I let them go hungry. I put them first whenever making decisions about going out of town or staying with my mom. They really are my children. My furry feline children.
Although, they can’t really understand what I’m saying most of the time… And my Mother’s Day present this morning was a pool of vomit next to the stove. Thanks, Aureus, you’re a gem. But gosh do they give great cuddles when I’m sore or sad. Cats are empathic, and give love and comfort when they feel it’s necessary. Which for me is kind of on a daily basis. So they are great for me. And regarding Mother’s Day… well, I just have to keep my chin up and remember that while I may never a be a mom to a child, I am a mom to Astrid and Aureus.
Also, I am blessed with having the unending love and support of my own mom. A woman who gives her love openly and freely. It’s never a strings attached situation. I don’t ever have to “owe” her anything, and she has never once told me that her love and kindness must be “earned”. She never makes me feel bad about myself, or treats me with disdain. She is a wonderful mom. She is what moms should aspire to be. I love her. She is a great mom and a wonderful grandma to her grandkitties.
Happy Mother’s Day to mothers of all caliber.
Thank you to all those who read my blog and support me in my journey. Please visit my webpage to lend more support, http://www.gofundme.com/sixthousandsteps
When my doctor first prescribed Prednisone I thought I had found a cure. After just a couple months of severe pain, without knowing what was going on, taking steroids zapped it away like it was never there. I convinced myself that I wouldn’t even need other medications for my RA. I mean why take anything else when I felt so good on the Prednisone? But my doctor cautioned me that I could only be on steroids for a short period of time because of the many bad side effects that would happen. I truly thought he was overreacting or talking about other patients, certainly not me.
Over time we came to realize that a lot of RA medications didn’t work on me. Either I had allergies to them, I built up a tolerance, or they just weren’t strong enough against my ever growing severe disease. And so I stayed on Prednisone much longer than my doctor would have preferred. In fact three years later, I am still on it. True, my dose is much smaller than it was in those first days, but the side effects were still the same.
The weight gain started out as a slow crawl. In fact, in the first year of being on steroids I thought that I was just lucky and had escaped the side effects everyone else would bemoan. The telltale “moon face”, medically known as Cushingoid, wasn’t happening, and I seemed to be faring well with the drug. It wasn’t until year two that I started to see the change. Again, it started slow, and then suddenly I looked in the mirror one day and there was “moon face” looking back at me. The weight started really piling on around the 16th month. Now I can honestly say that I have gained 80 pounds while being on Prednisone.
80 POUNDS! Shocking isn’t it? At first it was most noticeable in my face and breasts, and I thought I could handle a puffy face and a bigger cup size. But eventually it moved to my belly and now I look like I’m 8 months pregnant. I am disgusted when I look at myself in the mirror. It’s not me looking back. It’s HER. The girl who has this life I never asked for. The girl who carries all this pain and sadness and FAT.
And the absolute worst part about all of it is that I eat healthy. I know of cases where people start to put on the weight and they just decide to let themselves go because why not, it’s already happening. But that’s not me. I care about my diet, and my weight, and my body. I have a very healthy food regime, I count calories, I do portion control, I rarely allow myself to snack, and yet.. Nothing I do helps. It just keeps coming.
A typical day of eating looks like this for me:
Breakfast- one cup of tea or coffee, oatmeal, and a piece of fruit.
Mid-morning- a cup of tea (usually Yogi detox or slimming tea)
Lunch- salad, or roasted vegetables and quinoa, or dinner leftovers, or a healthy sandwich
Dinner- 4oz protein (fish, steak, chicken), steamed vegetables, quinoa or brown rice
And that’s it! Does that seem like the kind of diet that packs on the pounds?? No. My weight gain has nothing to do with what I eat. Prednisone is such a terrible terrible drug. I can look at a Snickers at the register at Safeway and gain two pounds, eating not required. The contents of my fridge are very boring. I have milk, cheese, juice, water, and fruit and vegetables in my fridge. My freezer is filled to the brim with bags of steamable vegetables, and frozen proteins. No ice cream, cookies, or chocolate. No pudding cups, or candy, or desserts. All I have is healthy food. My cupboards/pantry hold spices, oatmeal, soups, tuna, and rice. I don’t keep crackers or cookies or anything that could ruin my diet in the house, to avoid temptation.
And still, every morning I wake up and look into my mirror and see her. She won’t let me go. If only one day I will get to glimpse the girl I used to be, just once.
So you know what can be really hard to deal with, when I’m already faced daily with this depressing sight? A constant reminder that I’ve gained weight. Because, if this writing hasn’t already convinced you, I am very very aware of the fact that I have gained weight. I have successfully used a mirror every day since I was probably three or four years old. I know how they work. You look in, and you see what you look like. It doesn’t take a genius to figure it out. You don’t even need to be intelligent. My cats know what the mirror is, for goodness sake, and they love their reflection (good for them).
I know what I look like. I’ve been dealing with the changes every day for the last couple of years. I’ve dealt with the stress of trying clothes on in fitting rooms and realizing I’ve gone up another size. I’ve dealt with putting old clothes in storage because they don’t fit anymore, but I’m unwilling to part with them. I’ve dealt with learning new makeup tactics to slim down my face. Ive dealt with my hair falling out in clumps. I’ve dealt with less and less male attention as my body has grown round and unattractive. I AM AWARE THAT I’VE GAINED WEIGHT.
And in this very aware state of mine, you know what’s really unhelpful and hurtful? The constant reminder of the fact. You do not need to tell me. I already know. I knew before you had the idea in your head to tell me. I knew before you woke up this morning. I knew two years ago when you were still in denial that I was sick at all. Telling me what I already know serves no one but yourself.
I read a really great article today on RheumatoidArthritis.net talking about people giving unsolicited advice to people with chronic illness. The author made a really great point that I think can be applied here as well..
“Dispensing unsolicited health advice to someone with a chronic or terminal illness (or any illness) isn’t really a way for people to help the sick person, but to help themselves deal with the harsh reality of sickness and their own mortality. It’s like picking on someone else to make yourself feel better. Don’t tell a sick or injured person what they should do, because it’s a sneaky and harmful way of dealing with your own fear of death,” “You’re saying, tsk tsk – I wouldn’t let this happen to me the way you’ve let it happen to you.”
“Giving advice to people…blames the sick person for your discomfort with their reality and shifts any accountability you feel back on to them. We have ethical responsibilities to the vulnerable in our communities – and we find excuses to avoid them.”
I could not agree more if these words came from my own mouth. In fact I’m sure the author and I share some sort of psychic connection. This statement while talking about giving medical advice to the chronically ill, can be used in the same context for weight gain for the same group of people.
We already know the problems that we face. We can see our bodies change and we know we have done everything in our power to change it. But there are some things beyond our control! It’s not like weight gain for a regular person. Our weight gain has nothing to do with binge eating, or portion control, or living on a diet of Oreos and McDonalds. Most of us with chronic illness are on very strict diets due to the medications we take. More often than not, we don’t even eat full meals because food makes us nauseated and/or sick. I’ve had days where I’ve eaten nothing but breakfast because for the rest of the day I felt nauseated and gross. Or just not hungry.
So when people give us ‘advice’ about how to handle our weight gain, it really comes off like a slap in the face. It’s insulting. Do you really think I haven’t tried everything I could possibly think of already to get rid of this excess weight? Do you think I’m just sitting at home twiddling my thumbs and eating a King Size Milky Way and lamenting about why I can’t lose weight? Trust me when I say I have tried whatever you want to suggest to me. I’ve done almost every fad diet out there. Gluten free? Tried it. Dairy free? Tried it. No/low carbs? Tried it. Only eating fruit til noon? Tried it. No dessert, sugar, salt, flavor, butter, fat (etc) of any kind? Tried it. Miracle supplements? Tried it. Vegan/vegetarian? Tried it. Lemonade diet? Tried it.
I’ve tried everything you can think of and some that you haven’t read about yet but will tell me about as soon as you have. Please do not insult me and my intelligence by suggesting that I am sitting around doing nothing to combat this disease that has settled upon my body. And I’m not just talking about the weight gain here. I have tried numerous medications, treatments, remedies, and “cure-alls” in my attempts to fight my incurable chronic disease. For you to suggest otherwise is extremely insulting and disrespectful.
Perhaps instead of spending so much time telling me how I should better my life and my health practices you should concentrate on your own. Go ahead and look into that mirror and think long and hard about why it’s so important to you how I look and feel. Read over that quote again from RheumatoidArthritis.net and think about who this lecture really is for. Because I have my stuff handled. I am doing everything in my power to get well and fight this disease. I am very aware of my own mortality, and they way I live my life. So next time, before you want to share your “advice” about how I should handle my body, my disease, and my life, I urge you to look into that mirror on the wall and ask yourself who you’re really worried about. I think the answer may shock you.
**Excerpt taken from “Don’t tell RA patients what they could be doing to cure themselves” by Angela Lundberg on http://www.rheumatoidarthritis.net**
Thank you for taking the time to read my blog. If you would like to help support my fight against severe Rheumatoid Disease and Osteoporosis please visit my page at http://www.gofundme.com/sixthousandsteps
It’s been three years and two months since I was diagnosed with Severe Rheumatoid Arthritis. Sometimes that time frame seems like a very long time, while at other times it seems like it’s flown past. I can’t tell you how many doctors visits there have been in those thirty-eight months, though I’m sure its well into the hundreds. Which also means hundreds if not thousands of blood tests. Cat scans, x-rays, MRI’s and EKG’s number in the double digits. And let’s not forget two hospital stays and close to twenty Emergency Room visits.
Needless to say, I have a very thick medical record. Assembled over the course of these three years, it contains everything. The hospital where I primarily receive my care, as well as my mom, keep these identical records. My mom, whom is also my primary caretaker, is an exceptional organizer and note taker. She has kept every lab result, doctors summary, and consult record ever produced by the twelve doctors that we keep on retainer. Yeah, that’s right, I see twelve doctors, regularly. Maybe not every week, but most definitely every quarter.
Why, you may ask?
Cause I’m really sick.
And one of the only upsides of this fact is that I don’t usually have to explain myself upon arrival at a medical facility for treatment. They have everything on file, and if for some reason they can’t find it, well then there’s always Mom, patiently waiting in the wings to remind them of every little medical fact pertaining to my case.
Of course, it wasn’t always like that. I haven’t always had the best of luck in Emergency Rooms, Infusion Centers, and Medical Offices. There are some people who are eager to help, and some who’ve become jaded over the years. But that’s where Mom always comes in handy. Because if I’m slumped over in excruciating pain, or gasping for breath, or vomiting into a plastic kidney bean shaped tray, sure enough there is Mom by my side explaining exactly what’s happening to a nurse or doctor. She is my voice, my advocate, when I cannot speak for myself.
And unfortunately, patients of invisible illnesses can’t always speak for ourselves and be heard the way we should. Nurses and doctors see us in waiting rooms, sitting quietly, with maybe a frown on our faces, a peaked pallor, but nothing that constitutes an ’emergency’. Then they hear our complaints… chronic pain, fever, nausea, vomiting, hot sweats, cold chills, inability to move our limbs, inflamed joints… Well, if to the unknown eye we look normal on the outside, and we go into an ER complaining of severe pain and sickness, guess where their heads go?
That’s right, I must be a drug addict looking for a fix. Because of course there’s no way I could be legitimately ill looking the way I do right? Don’t take into account that I’ve been placed in a wheelchair because my feet are too swollen to put weight on them, or that my face is flushed with fever, or that I’m so dehydrated you can’t find a vein to establish an IV line. That would be too easy.
Fortunately for me, I usually have Mom, whom right off the bat reminds the staff that my medical record is on file, which prescriptions I’m taking, what my severe diseases are, and what has inflicted me that day and my reason for being there. They usually take notice when you have an advocate. Someone who will most certainly remember their moves and choices. Who will keep them in check. That way if I dose off (which happens every time they give me medications), or my pain makes it impossible for me to concentrate, I still have someone fighting for me.
Except last week, when I didn’t. On a rare, fluke occasion, I ended up at the Emergency Room without an advocate or aide. And that day I learned how very important it was to have someone with you.
At 5:06pm, last Saturday, I checked into the Queens Medical Center Emergency Room, with severe side pain due to rib fractures. I already knew what was going on as I had only been there two days prior. I’d fractured two ribs in my back. But because my blood tests had been flagged for possible blood clots, the doctor had told me to come back in right away if the pain got worse and I was feverish. Well, by early afternoon that day I was 2-2, so I ordered an Uber, and headed back down to the ER.
To my surprise, it was very quiet in the waiting room, with only a few patients/visitors seated. I was called almost immediately into one of the preliminary exam rooms, and a nurse started taking my vitals. I explained to her why I was there, stressing that the ER doctor from two days ago insisted that I come back in if I felt more pain. I also told her that it felt very much like I had broken more than just the bones in my back, but that my front rib cage hurt very much as well. She nodded, typed some notes in her computer, and went in search of a doctor, I presumed.
Only a few minutes later did a doctor come into the room. I was shocked at how quickly I was being seen, as the Emergency Room had never been so efficient before. The man introduced himself as an ER doctor and then flat out asked me what pain killer I’d prefer. Baffled at his question I asked what he meant. He again asked which pain killer I’d like to be given, and then started listing some of the well-known opiates that the hospital had on hand.
I was confused. Why wasn’t he examining me? Why weren’t they drawing blood or ordering x-rays? I asked as much and he just sorta looked at me for a minute, like he was trying to read my thoughts. I repeated my questions, Was I going to get another chest x-ray? Should we do another blood test to check for clots?
The second line of questioning seemed to grab his attention, and he agreed that a new chest x-Ray would be a good idea but that there was no point in doing any blood work. He then asked me again which pain killer I’d prefer, this time giving me a choice between two. I reluctantly chose one, verbally stating that I didn’t think it was necessary since pain killers hadn’t worked on me in a long time. Moments later a nurse appeared, and gave me a shot in the muscle in the upper part of my left arm. As expected, the pain killer provided no relief.
I was given another chest x-ray following the shot, and then was escorted to the waiting room for the results. At this point I’d been in the ER for a total of 82 minutes. I waited patiently in the waiting room, until the doctor and a nurse came out to talk to me. They didn’t take me aside for privacy, just sat down next to me in the waiting room to give me the diagnosis. I had been right. I had broken more bones in the two days since I’d last been there. The doctor thought my front ribs may have had a displacement fracture that fully broke apart in the two previous days. He then asked what kind of pain killers I wanted prescribed, AGAIN.
I was exasperated. I wasn’t there to get high on opiates! Did they not realize I was on a strict regime of medications daily for my Rheumatoid Disease?! A shot here and there of Dilaudid and Fentanyl weren’t exactly doing me any favors when I’d been on the highest dose available oh Methadone for the last two years. It was like offering me Skittles or M&M’s for the pain. I didn’t need a pathetic sugar rush, thank you very much.
At 6:58pm I was discharged from the Emergency Room. Less than two hours after arrival. No blood drawn, no IV line with fluids to keep me hydrated, no labs, and a quick 2min chest x-ray. I’ve never been seen or treated (if that’s what you want to call it) in such a short time frame. And I 100% believe it was because I had no one there to speak for me. They wanted me in and out as quick as possible. If it weren’t for the fact that I did actually have a new fracture, I’m sure they would have attempted to completely treat me from the waiting room alone.
Now I’m one of those people that doesn’t go to the emergency room unless I’m having a legitimate emergency. I hate it when people waste hospital resources on bad colds, the flu, or a twisted ankle. These are all ailments a PCP can take care of Monday through Friday. The only reason I went in that Saturday was the doctor told me two days before that if I had a fever and my pain worsened then I had to come in to make sure it wasn’t an emergency like a blood clot.
But being treated like a drug addict looking for my next fix is unacceptable. I told that doctor and those nurses that I came in per the last doctors request. That I’d been running a fever, and thought I’d broken more bones. At no point did I ask for pain medication. And when offered it I turned it down because I wanted to know what was wrong, not just put a drug bandaid on the problem. And this is let the first time this has happened, nor do I expect it to be the last.
I know that the state of Hawaii has a major meth problem, and that the hospital emergency rooms on island deal with overdoses in excess, as well as the homeless trying to get their next fix. But just because it’s a problem that they continually deal with, I shouldn’t have to be abused by that stigma. There are legitimately sick people that go to emergency rooms and urgent care facilities to address their legitimite illnesses. We shouldn’t have to convince medical professionals that we want medical attention, I mean that’s why you go to an ER in the first place.
I don’t know who is more the problem. Is it the medical professionals that attach the stigma to us as people who just need a drug dose instead of legitimate care because that’s what’s they are used to? Is it the homeless and/or drug addicts that abuse the hospitality of hospitals where they can get water/food, and maybe even a bed for a few hours, while trying coercion tactics for their next fix? Or isn’t the healthcare system itself, deeming which patients are more important, who should be seen quickly and who should be shown the door?
I just feel that more harm than good is resulting from all of this. Especially as another day passes where I’m in the ER having to explain my severe medical condition to get another doctor who refused to look at my medical record to see that I’m a legitimate patient. I shouldn’t have to beg to be seen and/or treated. When did my rights as a patient get pushed to the side? Why do I always feel victimized when leaving the hospital?
Enough is enough.
“No Doctor, I would not like a shot of Dilaudid for the road home. I’ll just take my x-rays that proved I was right, and that I do have broken bones, and be on my way. Thank you for making me feel like my ailments weren’t as important as that meth addicts’ in the corner over there. Perhaps he’d like the pain shot you keep trying to push on me.”
**The x-ray on the left was taken on Thursday and the one on the right, two days later on Saturday. In the bottom right hand corner of Thursday’s x-ray you can see that the bone is intact, while on Saturday’s you can see the fresh break. Proof of my severe Osteoporosis. Only two days apart with no accidents or falls- a full break of rib bones.**
If you would like to help support me medically/financially in my journey, please visit my page at http://www.gofundme.com/sixthousandsteps. Thank you.
Remember when you were little and you had an unnatural fear of monsters? For some of us it was the monster in the closet, that had our eyes trained on the door when the lights went out at night. Or it could have been the monster under the bed, making us fear for our limbs if we had to get up for water or the bathroom. For me, it was the drain monster. The brother of one of the girls in my Girl Scouts troop would tell a story about a monster that lived in pool drains. If you ever swam too close to the drain, the monster would reach out and gobble you up. This story haunted me for years. In fact, to this day I’m still wary of pool drains, tending to stay away from the deep end. It’s funny how childhood terrors stay with you.
I always figured this was the reason I was so into horror movies. As an 80’s child I grew up watching Jaws, The Goonies, It, and The Gate. Sure, they were scary movies that have me nightmares, but I still liked watching them. As I grew older, my tastes didn’t change. To this day Jaws is still my favorite horror movie; in fact I own the 4 movie series on DVD. I love monster flicks. Lake Placid, Piranha, Deep Blue Sea, Aliens, Predator, all great creature movies. But one that has always stayed with me since I saw it in the late 90’s was Deep Rising.
Deep Rising was cheesy horror movie that came out in 1998, about a high end cruise ship being attacked by an ocean dwelling monster. It captured the idea of the ‘fishbowl theory’ perfectly. That idea of course being that some fish only grow to the size of their tank, so just think how big they could get in the deep blue sea. In the movie these small worm-like creatures ended up being quite big out in the ocean, and took it upon themselves to attack this ship, entering it through bowel systems and pipes. One of the best ‘horrific’ scenes is when a scared passenger locks themselves in a bathroom and sits down on the toilet, presumably in attempts to hide from the scary beasts. Bad choice on their part, as one of these creatures comes up through the toilet and devours them. Not a great way to go…
When I first saw that movie I was in my late teens, and had obviously long ago gotten over my fear that monsters did in fact live in drains, hide in closets, and lurk under beds. Sure the memories lingered, and to this day I’m still wary of cannibalistic clowns hiding in storm drains, and tend to avoid walking across them. And I have no problem at all admitting that I am often afraid of the dark, and spiders should be murdered on contact. The point is that we grow up and change. The things that go bump in the night are no longer hiding in the dark corners of our bedrooms, but rather the back alleys of Chinatown. And claws and sharp teeth aren’t as scary as guns and knives.
I am not afraid of the drain monster. My shower and the neighbors pool don’t scare me. But… on a really bad pain day, my toilet can be pretty scary. No, not because a giant worm monster is going to creep up the pipes and eat my butt… though now that image will definitely be in my head next time I pee (Good job, Christine). What I fear is the pain that comes from trying to get off that toilet seat once I’m done. What a very real fear that can be.
Today was a bad pain day. I must have been really exhausted yesterday, because I slept through my 4am medicine alarm, not waking until 6:30am. My joints were not happy. I should have had a good dose of steroids and pain management a couple hours before, to hopefully start my day in a semi-mobile state. But because I slept through my alarm, I’d gone 2 1/2 hours without continual medicine in my body. Gosh, could I feel it. To say I felt like I’d been hit by a bus would have been a gross understatement. My flare was widespread and excruciating. I knew I had to use the bathroom but the very idea filled me with panic.
How was I going to get up once I was done?
I knew from the sight of the discolored skin on my knees that they were flaring the worst. The flesh was squishy to the touch, a sure fire sign that there was infected fluid around the joint and bones. Clutching my newly fractured left ribcage, I rolled to my left and pushed myself into a sitting position. Gingerly, I touched feet to floor and hoisted myself up.
Involuntary yelp. The pain was undeniable. I hobbled into the bathroom, and nervously looked at the toilet. I knew I had to sit on it, but I was truly afraid that once down I may not get back up. My need for relief outweighed the fear and I slowly lowered myself down.
Another involuntary yelp. How could anything hurt this bad? I was exhausted from the effort. I did my business, and then closed my eyes, readying myself to get back to bed. With one hand on the wall in front of me, and another on the sink to my right. Deep breath. Deep breath. And go….
Nope. No go. The second I put pressure on my knees I fell back down.
Fear engulfed me. I wasn’t even near my phone. What if I couldn’t get off this toilet? What if I died right here from the pain? Was this my story?
“Patient dies on toilet.”
Let’s try this again. Hands on wall and sink, feet spread wide for traction, and…..up?
No, not quite. Okay, third time is the charm. Just think how great bed will feel. Smooshy pillows, snuggly blanket, cuddly cats…
Not dying of arthritis pain on this toilet. Not today. No sir.
One, two, deep breath, and… “AAAAAAGGGGGGHHHH….”
I was up! Gosh, I hoped my neighbors didn’t hear me screaming and call the cops. But the point was I made it. It hurt like nothing I could describe… But I had gotten up and back into bed.
The pain was real.
The fear was real.
I know healthy regular people don’t understand how someone could be afraid of a toilet at 34. To be honest, if I shared it with a friend their mind would probably go to a different place than what the reality was.
‘Was I nuts? Was I scared of a toilet boogeyman? Did I think something lived in there?’
No guys, I’m not nuts, though peanut butter on toast sounds really yummy right now… There is no monster under the bed, or worm monster coming out of my toilet to get me. The only thing I truly fear these days is when and where I’ll die. And how much more pain I can possibly endure. Or what happens if I really can’t get off my toilet when I’m done.
Is fearing Jaws will eat me when I go swimming in the ocean a rational fear? No.
Is fearing pain itself real? Yes.
And I live with that fear every minute of every day.
If you would like to learn more about my disease and journey, please visit my page here, where you can also help support me. Thank you.
As someone who has a lot of time on their hands, I find myself on social media quite a bit. It’s easy as pie to just tap my phone to see what’s been posted on Facebook or Twitter, or to have a quick laugh on Reddit. Quite honestly, I probably check my Facebook status anywhere from 15-30 times a day. A bit excessive yes I know, but be honest with yourselves, you do it too! Seriously, why don’t you go ahead and count sometime… I bet you’ll be surprised at how often you do it.
I think it’s part of human nature, the incessant desire to never miss out on anything. We want to be a part of everything and anything, and we feel let down if we aren’t “in the know”. This could pertain to anything too, be it sports scores, which celebrity is shagging another, your own friends relationship status updates, or how many potato chips the girl who’s dieting in the cubicle next to yours just ate. We have to know each other’s business, secrets, feelings, happiness, and pain. It’s just the way it is. We are obsessed with information.
My own personal vice is Who has read my blog?
I constantly check my stats on WordPress and Facebook. Has anyone new read them? Did they like what I wrote, did they leave a comment? Do people understand what I’m feeling? Am I making sense? Do they connect with the words on a spiritual level, or a physical one? Or do they even read them at all?
Have you ever noticed that you can post something online like a really long status update that’s a few paragraphs, or a blog, or an article, and people click like within seconds of you posting it? What exactly is it that they are liking? Cause it’s not your post, there’s no way they read it hat quick. So basically they like that you posted anything at all. And then you have no frame of reference on whether someone truly liked what you posted because they are just obsessive “clickers”. Someone posts something and hey are compelled to immediately react to it. Drives me nuts.
But why am I really annoyed by this? I mean, I don’t write my blog for anyone but me. Seriously. I may say that I love checking my stats and enjoy reading comments left, but at the end of the day, my blogs are for me, myself, and I. They are a way for me to express my darkest thoughts and feelings. Because in a way, they don’t feel read until I put pen to paper, or in this case-stylus to kindle. When I see my words, my feelings, my thoughts, well, that’s when they become real. It’s like saying something out loud makes it real for some people, well, writing it down makes it real for me.
It helps catalogue my thoughts, wishes, and dreams. I can always go back through them and remember exactly how I felt on that one day. Just like a diary, my blog is an extension of who I really am on the inside. So maybe my obsession with stats checking is really more about wanting to validate that people around me understand how I’m feeling.
In my last blog I talked about realizing my fears. Actualizing them and understanding how they affect my life and how in reality they have made me who I am today. Before writing that blog I lived in the fear of people knowing what I’m really feeling. I was saving their feelings and making them comfortable by not sharing my truths. And for what? So they don’t have to feel bad about my disease. What a senseless waste of time that was. Why should I hide what was really going on? Why were others comforts more important to me than my own? I guess I realized I was people pleasing, something that I’ve given up in recent days. I learned through putting my feelings out there that I was doing more damage than good. Mind blown.
Life is a journey. We learn new things every day, especially about ourselves. It took me three years to learn to put myself first. That time frame sounds ridiculous when I think about it, but that was my reality. But then I put my feelings into words and made the necessary changes. That’s what my blog helps me do. Realize what needs to change, how I can grow, and make it happen through actions.
Todays life lesson and realization is that social media does nothing for us if we aren’t commiting to being real and being ourselves. You’re not doing anyone any favors by liking every single thing that’s posted, or checking statuses every two minutes. You’re just feeding a compulsion to know information that isn’t necessary for your life. What we should really be focusing on is OURSELVES. What helps us move forward and grow. My life isn’t going to change drastically if I have more followers on Twitter or WordPress. The only thing that should matter is me, myself, and I. How I live, how I learn, how I grow. Everything else is just fodder. It’s time to remember that I am here for me.
If you would like to help support me, please visit my page here to learn more about my journey. Thank you.