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A drop in the ocean

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.

 

 

 

 

 

 

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My cold is not like your cold

I know time and time again I have advocated for the fact that being sick is not a competition or a race. We are not in the Pain Olympics, and no one gets a medal for being sicker than someone else. But I have to stomp my  foot today and cry out for all my sisters with Rheumatoid Disease and declare “Our colds are not like your colds!”

Its cold season for sure. I can’t get on a bus or be in a doctors waiting room without hearing a sniffle or a muffled cough. A lot of people are sick, and its no ones fault except for maybe the weather and this damn rain that keeps everything damp and chilled. So, we all walk around with crumpled tissues in our pockets, and and extra sweater in our bags, and we look like crap. All of  us. No one looks awesome when they have a cold. And everyone, men and women alike, has a little pity party for themselves about how shitty they feel.

Here’s the thing though, having a cold is shitty enough when you’re a regular healthy human. You get a cough, or the sniffles, and a sore throat, and your head becomes a bit fuzzy. Sometimes you gotta stay home from work for a couple days because you feel so lethargic and icky. Eventually after a week or so, your symptoms start to fade, you pull through, and its only a matter of time before you’re having a beer with friends around the corner again.

Let me paint another picture for you though… The picture of what its like to get sick when your entire life is already about being sick. When the cold symptoms start you’re praying that you don’t have the sniffles because of a cold, but maybe because you just breathed in dust from the curtains that you’ll never have the energy to clean. The sore throat starts and you force feed yourself a gallon of OJ because you know you can’t get a cold. But you know, you always know. Because no one knows their body more than someone who lives with a chronic illness.

Colds for us can last as long as three months if we aren’t strong enough to fight it. They can turn into Pneumonia, Bronchitis, Strep, and worse. A week can pass in bed where the only thing we can do is shuffle to the bathroom to pee, and then back into bed so we don’t get chills. Headaches turn to migraines. Those of us with chronic pain can sometimes be blessed by our diseases taking a back seat to let the cold do its worse. But other times we are stricken with flares, whilst also dealing with sore throats, raw noses from blowing too hard, and brain fog. A common two week cold for an average Joe turns into a two month long nightmare. And one of the worst parts is that we often aren’t allowed to get our regular treatments for our chronic diseases if we are fighting a cold or infection. Chemo and biologics have to be put on hold until the current illness clears our system. But they can’t if our flare ups contribute to them. So we get stuck in what seems like a never ending cycle of illness. For days, weeks, months…

So, next time you feel like responding to your friend that suffers from chronic illness that their cold can’t be as bad as that one you had last week…maybe take a moment to think about the differences between your every day life and theirs. Because from where I’m standing, I’d much rather a week long cold than the four weeks and counting cold I’m currently enduring.

 

One year ago 

One year ago, I was sitting in my favorite coffee shop with my mom, drinking delicious lattes from ceramic cups. Despite the intense summer heat in Hawaii, I was always in the mood for a Brue Bar latte. That day was extra special though, a significant moment in my medical history. It was the day I received my approval letters from Social Security. 

It had been just under two years since I had filed for federal disability. Two years, that to me, seemed like a lifetime. I still shudder at the thought of how broke I was during that time, how desolate. I lived with two sets of generous friends, who allowed me to stay in spare bedrooms for months on end as I waited. I lived on a very small state disability income of only $248 a month. That had to cover bills, medications, transportation, and incidentals. I became the queen of budgeting. Even my pain therapist said I could draw oil from rocks.

So, one year ago, when I received the letter telling me I was going to finally get enough money to live off, money that would help pay for rent, groceries, medical supplies, and more, I was quite overwhelmed. I cried, right there in the coffee shop, in front of my mom. My mom was probably the only person on the planet that understood the significance of these letters to me. She took a picture of me from across the table, one shaking hand holding the letter, the other wiping tears from my eyes. I was still very overweight from the continued steroid use at that point, and I was heavy in the face. It’s probably one of the most memorable and significant pictures of myself that I have. 

One year ago, I received Social Security benefits. A lot had changed since that day, and I’d like to think that it had to do with the positive effect this has all had on me. I’ve dropped a significant amount of the steroid weight, and I recognize myself in the mirror again. I’m in a new county where I’m finally getting really good medical help. My moods have changed, and I’m more often happy than not. 

One year ago I received a letter that would change my life. It did.

Mother’s Day for the childless

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