The Choice

When I was eleven my mom and I were living in New Zealand, her native country. It was definitely a lot different growing up than growing up in Hawaii, an island chain that didn’t experienced the four seasons like most. Hawaii didn’t change into shades of autumn, there were no piles of fallen leaves in gold, auburn, and burnt orange. The worst winter I experienced was just hard rain that brought on humidity that only those living in the tropics would understand.

When we moved to New Zealand following her finalized divorce to my dad, my mom cautioned it would be colder, but it never felt that cold to me. I bundled up in sweaters for winter, and donned a rain coat in spring, but that was more for comfort than anything. I didn’t realize the temp change until dipping in the ocean for the first time. The South Pacific Ocean was much colder than the tropical climates I was used to. I could never get used to the icy feeling. Those who lived in New Zealand were of course used to it, stating that in the summer it was warm. But their idea of warm was my idea of Hawaii on its coldest winter day, when most wouldn’t jump in.

However, I was a born water baby. I have many photos of me as a small child, and I’m always playing next to a body of water. The Scorpio in me could never get enough, I was a water sign through and through. As soon as I was old enough my mom put me in swim school and I took to it like a fish. I won swim meets left and right, and excelled at anything water related.

So, when I was eleven we visited a famous Auckland region beach called Piha, located on the west coast. Piha was known for its good surfing, even boasting a surf club. It was a black sand beach as well, which I’d only ever experienced one other time before, and loved the novelty of it. Piha was also known for its strong currents and rip tides. So well known in fact that there were safety zones in which you could only swim between two marked flags, and lifeguards on duty to rein in swimmers or surfers who’d been dragged out by the fierce pull of the ocean.

On that fateful day back when I was eleven, we had been driving around with my moms boyfriend at the time and I had brought a friend along with me.

Rae was a schoolmate whom was certainly not my favorite friend, but was the one available to hang out that day. While we got along just fine, I had always sensed a bit of resentment from her (yes even at 12 I could see it). She was an only child as well, from a single parent household, but was raised by a father and not a mother. I often wondered if she envied my close relationship with my mother, and had noticed quite a bit of competitiveness.

We weren’t beach ready, and lacked swimwear, but we did have a couple towels on hand and Rae and I begged to go for a dip. Looking back now, the t-shirt and shorts combination I was wearing was definitely not the best swimwear for a beach like that. However I was eager to be in water again, and despite the chilling cold of the icy South Pacific, I jumped right in.

That day I learned a valuable lesson that has stayed with me for a long time. Rae and I unfortunately got caught in the rip tide that day, and we were pulled quite far out. We knew we were in trouble but started to make the slow and steady swim back in. After what seemed like forever, a lifeguard boat came out looking for people in distress. Rae was closer and I shouted at her to get his attention. Luckily he saw her straight away and picked her up. I waved at her to have him pick me up too, but she did something that has stayed with me for these twenty five years. She looked right at me and then turned her head, and motioned she wanted to go back in, knowing that I needed help but denying it to me. In that moment she couldn’t look past her resentment or whatever she felt deep in her soul, and made the choice to leave me in the sea.

I understand that at eleven perhaps she didn’t know what she was choosing, that she might not have had the capacity to realize my life was in her hands. Though I certainly had the capacity to know and realize if I wanted saving I would have to do it myself.

I don’t know how long it took me, but I slowly and methodically swam in. My water laden shorts and shirt did nothing to help my struggle, and I’d never realized until that moment how very streamlined my swim team uniform was. I thanked the universe that I was a swimmer and that perhaps I’d always trained for this moment, when my skill would be needed most. I finally made it back in and back to my mom, her parter, and Rae. I glared at Rae but said nothing to her, it wasn’t necessary, we both knew what she did. And after that day I didn’t spend any more time with her outside of school. I knew a bad apple when I saw one.

I have thought of that day many times. I’ve mulled it over in my head, picked it apart, tried to understand how and why. But the conclusion I’ve always come to is that we just can’t know what’s in the heads of others. We can’t know their demons, as much as they can’t know ours. Did she want me to drown? Probably not. Did she want me to suffer? Maybe. It’s not worth thinking about too hard.

Last week, I returned to Piha Beach for the first time since I was eleven. Twenty five years of fearing those strong currents, and in a way fearing the death that I could have met had I not been strong enough. I sat and let my feet squish in the black sand, watching the distant waves before me. It was then that everything started to make sense. I had an epiphany.

About a week ago I saw a post I liked on a chronic pain page that I follow on Facebook. It said..

“I often ask myself, why me? Why must everyday be a pain day? But then I ask myself – why not me. I would not wish this on anyone else and perhaps the universe gave me this because I can handle it better.”

Now when I first saw that I scoffed at it. I mean the universe sucks in picking people if that’s the case. I’d prefer a different present thank you very much.

But when I was at the beach, I started to think about it. And then I got back in the water after having being scared of its currents for almost three decades. The currents were really strong and I had to fight to keep between the swimming flags. There were moments where I wondered if I should pick my feet up and see how far it swept me away. It was then that the universe reached down and gave me a revelation that has taken my lifetime to conceive.

On that day, when I was eleven, I could have certainly drowned if I gave up. I was tired, my legs and arms ached at the weight of the water against me. I could have let go and let the sea swallow me. But I didn’t, because I knew I could make it. I knew it would hurt and it would be exhausting, but that I’d make it if I wanted to live.

Since I got sick, and then sicker, and then sicker, I have cursed the world for giving me this when there are healthy serial killers that walk the streets. Cursed the universe for giving me this pain and heartache when there are billions that live without it. But just like that moment in the ocean all those years ago, I was given a choice. There have been so many times that my disease has almost won. I’ve been hospitalized, been in cardiac arrest, I’ve blacked out because the pain almost consumed me. But I’ve always chosen to wake and deal with it. There have been times where I know my body would have given up if I let it. A moment in a hospital bed after I blacked out from arrest, a moment where I saw dark and light and knew I could choose a different path.

I chose to live. And sure, I don’t want to be sick. I hate my disease and the fact that I never get well despite the handfuls of pills they make me take, and the chemicals they pump into my IV. But I’m still alive, and I wouldn’t wish this on anyone, even that girl so long ago that turned her back on me. Maybe the universe did give this to me because it knew I could handle it. That I wouldn’t let it defeat me. Maybe that’s what it means to be alive. Having something to fight for, living for more than just the 9 to 5, and the mortgage payments, and the white picket fence. Sure, a lot of people have it better than me, physically, mentally, and financially. But maybe I’m different because I’ve looked into the darkness and turned away.

I’m alive not because my heart still pumps. I’m alive because I choose to be. I’m severely ill, dying slowly from incurable diseases. But I feel more alive because I know how fragile I am. I’ve looked into the darkness a few times now, and I’ve said no to its painless quiet. I’d rather live with this than not at all.

Now Piha Beach can be a memory of the first time I chose to be stronger than you could ever imagine. And choosing is beautiful.

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Mulling Over A Dream

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

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

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

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

The last memory of my other life.

The life I had before this was all I knew.

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

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

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

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

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

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.

 

 

 

 

 

 

Hands… I only get two, so back off

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

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

Like today.

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

It’s nice to dream.

It sucks when that dream bubble bursts….

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

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

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

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

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

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

The deafening darkness

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. 

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

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