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Let’s talk about karma

I had an interesting revelation recently about karma. See, for the longest time I thought that karma wasn’t on my side because of the chronic illness I suffer from. I figured things surely weren’t going my way especially if I was in constant suffering from this terminal disease. I’d hear other people complaining about their lives and I admit that it really frustrated me. Not because they aren’t deserving of complaints, no judgments here, but because they sounded so minor in my mind to what I was feeling. And that’s of course wrong. I shouldn’t judge others lives as much as they shouldn’t judge mine. I wasn’t mad at them, I was mad at my disease. 

I guess for a long time I felt cheated by life. Cheated by the world, for having this incurable pain that I had no control over. But then I had this great epiphany a couple of weeks ago. It was just after receiving an amazing gift from a friend. I had unfortunately just cracked one of my teeth, while eating boneless chicken, no less. I was desolate because I knew I didn’t have enough money to go to the dentist, let alone go and get a root canal and a crown, which surely would’ve been the case. I was super depressed and had posted on Facebook how frustrated I was that I was too broke to go to a dentist. And amazingly an acquaintance of mine reached out through a personal message and offered to pay for a dental visit for me. 

I was floored. Having only one other time experienced such generosity, I was shocked. 

Despite my protests, my friend insisted I go to the dentist the next day, which I did. And very unhappily came to find that it was not one tooth, but two! Could the news be any worse? Yes. It would cost close to $4000 to fix my teeth. I was even more depressed by that point. So I told the dental assistant to call my friend, whom would be paying for the consultation, and he would give her a credit card over the phone. While she went off to collect her few hundred, I sat trying to comprehend how I could come up with all that money for a problem that was a pretty big issue. They were my front bottom teeth, and it wasn’t something I could ignore. Imagine my giant surprise when the dental assistant returned and told me my friend had not only paid for the consultation, but also for my two root canals AND crowns. Almost $4000 in dental surgery and reconstruction!

I was speechless. After agreeing to come back later that afternoon for the dental surgery, I contacted my friend, worried at how much money he had spent. But he was so nice! Told me he was glad to help me, having known how much I needed it. Not only did he know I would never be able to pay him back, he didn’t even ask for me to. I could not believe the generosity of someone I didn’t know that well.

That  night, as I rested at home with a swollen and numb jaw, I also remembered the generosity of another person. Someone who had read my blog and sought me out because of it. A very generous person who treated my mom and I to an amazing meal at their restaurant, just as a way to say “I care”. Two people who barely knew me, but understood my struggle, my pain, had reached out and given amazing support in ways I didn’t know could happen to people like me.

And of course I have received support in many other ways, from many other people as well. Friends who have bought me groceries when I’ve run out of food stamps, or couldnt get to the store. Friends who’ve paid my phone bill because all I could afford was rent. People who didn’t even know me and donated to my fund to help me have a home. Family members who have helped get me to the er and the doctors office. Family that took care of my cats when I was ill or away. As well as two military families that took me in after I couldn’t work anymore. And all of this done selflessly, with no expectation of payback, or strings.

I have been very very lucky.  I realize this now. All this time I thought I had bad karma because of my disease. That I was being punished for any wrong doings I’ve done in my life. No. How very wrong I was. My karma is outstanding. How else to explain why so many amazing  people do amazing things for me in my life? How else to explain what wonderful people I have around me, who dedicate themselves to supporting and loving me? If I were a bad person, people would not help me as they do. You don’t give your generosity to someone you think isn’t worthy of it. Not generosity like I’ve received. 

Silly me. Bad karma? No no no.

My karma is outstanding. What a wonderful thing to behold. And thank you to all of the people in my life who helped me realize this.

I’m not a superhero, but it’s scary all the same 

It’s nearing the end of 2016, and it seems like people are dropping like flies. Carrie Fisher died this week. Princess Leia, a superhero hero to one and all, one of the originals. She empowered women and girls alike, showing that we don’t need to be “saved”, and that we can have kickass adventures in life on our own. And just days later her mother, Debbie Reynolds, followed her demise. Just last week pop icon, George Michael, died as well. This was also the year that took Prince. 

Superheroes these people were. But the real life kind. George Michael gave millions of his earnings to the needy. Prince donated time and money to foundations as well. You could say they all lived good and meaningful lives. Their deaths will all be remembered, their lives immortalized in history and our minds.

That’s what we do with famous people. We build them up to be larger than life.

I will always remember this poster I saw on a directory stand at a mall once… It’s said “You can probably name every single American Idol winner, but do you known the names of all of your child’s teachers?”

That’s so true isn’t it? We know totally useless information about famous people, probably more than their own families or themselves. Yet we don’t know much about each other, r important people in our lives.

I guess my point is that we dwell on things that don’t really matter. Things that aren’t important or necessary or helpful to our growth and intelligence. And while focusing on nonsense we forget about what’s really important, or whom.

You know what came to my mind when I saw that Princess Leia died? ‘Millions will remember her death, but I wonder how many would pay attention to mine?’ 

I’ve tried to be as honest as I can to friends and family about my disease. I try to explain my symptoms, or what the doctors say, or what we know. But either it goes in one ear and out the other, people don’t really believe it to be true, or its too intense to comprehend at all.

Mom knows. Or at least I think she has a pretty good grasp of the reality of the situation. Even more so since my therapist sat her down and really made her see. I can’t imagine what must have gone through her head that day. Was it like everyone else I tell? Incomprehension? Sudden, gripping fear? Denial? 

It’s just like the Christmas season and Santa Claus… It’s all a myth, not really real right? Or the monster under my bed isn’t really there if I close my eyes real tight and pretend it’s not there… They’ll count to 1, 2, 3, and the boogie man is gone and all is right in the world again. Rheumatoid Disease doesn’t work that way…

You can’t pretend it doesn’t exist. And it won’t go away if you act like it’s not there. It will creep on you slowly, getting worse, and worse. Until one day you’ll look in the mirror and a poisoned and pale stranger looks back at you. Her hand are deformed, her back is hunched over, water and steroid weight clinging to her frame. She is not the beautiful woman who use to live in the mirror, and her weight won’t go away with diet and exercise and a can-do attitude.

Tonight Mom called me crying. She was sad for Debbie Reynolds. That she had to watch her daughter die before her, and that maybe the heartbreak of it, took her life as well. I think it was the first time my mom truly grasped the reality that she could outlive me. I’ve known for some time now. I’ve dealt with the depression of it, the sting of reality, the hard lump in my throat that I cannot swallow away. No parent should have to bury their child, adult or small. But that could be our reality.

I think the biggest issue patients face with Rheumatoid Disease is that people don’t understand how serious it can be. Everyone knows the word “cancer”, and they associate that with the deadliest kind of illness. But cancer isn’t the only thing that kills. And some autoimmune diseases are worse and kill quicker than cancer. Bet you didn’t know that did ya? Just like the Top 10 Billboard Artists, you can name them, but not diseases that kill. 

Well here I am to inform you… Cancer isn’t the only thing that kills. And most of you didn’t even realize how severe my disease was until I started undergoing chemotherapy, which yes, helps other ailments besides cancer. My hair is falling out, I throw up all day long, I look and feel awful. Yes, my disease is as bad as some cancers.

What you don’t know, or don’t want to know, is that I’m on borrowed time. I’ve tried to tell you how sick I am. I’ve asked you to understand. I’ve explained again and again. I post articles, I do research. I ask you to believe. But the Kardashians are more entertaining than a misunderstood disease. Or the latest Star Wars movie, or a new car, or celebrity deaths in the news.

It’s hard to watch anyone die so young, especially one of our female superheroes. I’m not famous, but mortality is the same for me as I’m sure it was for Princess Leia. No one wants to die young. Im not a superhero, but it’s scary all the same. The difference is I won’t be mourned by millions. I only hope that if I do go early, my body would shed light on this awful disease that is intent on stealing my joy. That I could at least serve a purpose for those who come after me, and that a cure will one day be found.

You may think this is a bit morbid. But I guarantee you, it’s only the reality I’ve been trying to share. I wish people would see my disease for what it truly is. I wish people would listen when I explain how very ill I am. I wish they would believe my doctors when they say that I won’t live as long as my friends. I wish people could truly see and understand. And really listen and try to understand as much as they would pay attention to their fave tv series or movie star.

I may not be a superhero, but my health and body are not less important either. I’m trying to stay afloat in a world where I’m drowning in my disease. All I want is for others to acknowledge that I am a person too. A person dying from an incurable disease. I just want to know I have the love and support and understanding of others. 

It’s a lonely reality when you know how sick you are, but it’s not as important as the latest blockbuster, or latest Prada bag, or the car you’ve always wanted. If you it’s a hard reality knowing exactly where you are on a priority list, and half the word sits above you.

 I’m sick. Can I get an acknowledgement please?

Texting Doesn’t Say I Love You 

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

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

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

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

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

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

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

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

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

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

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

Support Isn’t A Competition.

I read a great quote online yesterday, which prompted me to write this blog today. It was one of those posters that Word Porn posts daily on my Facebook feed, and instead of scrolling down past it like I do usually, this one caught my eye. Here it is…

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This one really spoke to me, because I feel like I deal with this on a regular basis due to the nature of my disease. And this particular statement I feel like I’ve literally been living.

Rheumatoid Disease has plagued my body for three and a half years now. Endless years, it seems sometimes, that I’ve dealt with this indescribable pain, whom no one can fix. I’ve tried so many medical treatments, pharmaceutical and homeopathic. I’ve attempted every fad diet out there, all proclaiming to be the “cure-all” for my disease. You name it, and I bet I’ve tried it! Even going as far as using essential oils, sleeping with healing rocks, and attempting to meditate the pain away.

I have spent countless hours in frigid medical offices, waiting for yet another “check-up” appointment. Or another visit where my doctor will inform me that now do I not only have the worst case of Rheumatoid Disease for someone my age in Hawaii, but also of all their colleagues’ patients on the mainland as well. Gee, that’s some great news, I’ve always wanted to be the best at something. I could never have imagined it would be concerning a debilitating, incurable disease. I’m so lucky!

I’ve spent more time with my Rheumatologist and PCP than I have with some of my closest friends. Truth be told, that could also be said for most of my family members as well. And I’m not saying that’s something bad, it’s just my reality. My week’s schedule is usually broken down in three main priorities: first comes doctors appointments, then work related training/events/prospecting, then family time, and friends and social engagements can be worked in after that.

If you really look at my priorities, you can also see how important my health is to me. I’m 34, about to be 35 in one month. I don’t want my disease to define me, and to accomplish that, I need to work hard at finding a way to coexist with it. I have to figure out how to live with my disease in a way where it doesn’t rule my life and dictate who I am as a person. And to do that, I am 100% committed to finding a medical treatment plan that works for me.

My second priority is my financial independence. I now receive a small monthly siphon from Social Security, but it is nowhere near enough to live off of. So I had to find a part time job that I could do without hurting myself, or worsening my disease. That came in the form of direct sales with Rodan + Fields, which fortunately fits my needs perfectly. I work from home, hell, most days I work from bed, and I make my own hours. I’m my own boss, and have no one above me causing me stress. It’s almost completely social media and word of mouth based, and works perfectly with my retail background. I’ve only just started, so I’m not making any real money yet, but I will in time, and I’ll be financially secure for my future. And the best part is that I love my job. I love helping people, and making them happy. So, really, it’s a Win/Win.

My third priority is my family. No matter what is going on in one’s life, it’s always nice to have family to fall back on. Spending time with both sides of mine (I was a child of divorce, so I get two), is something I try to make time for regularly. Now, I’m not saying that my family relationships are perfect, far from it. But at the end of the day your family doesn’t change. You don’t get to swap them out if you have a fight, or don’t see eye to eye. With family you’re committed to the good, the bad, and the ugly. And I have dealt with all of those memories from both sides of mine.

Although, this is where the aforementioned quote comes in to play.

I understand that dealing with people with disease is hard for some. Knowing a friend, or even an acquaintance, who is going through an intense medical situation can be tough. Even dealing with a lesser medical situation, like maybe reoccurring headaches or acid reflux, can be hard for some to process. We don’t know how to react, or how much empathy or sympathy to have. It’s daunting for some people to deal with those who are sick. And even more so if we are talking about incurable diseases, cancer, or any other life threatening medical issue.

In my own medical journey I’ve actually lost friends because of my illness. Not because they were scared of “catching it”, Rheumatoid Disease isn’t contagious. But mostly because they were at a loss of how to handle it. They didn’t understand the disease, and why I was so sick, and why after all my treatments I wasn’t getting better. And instead of asking me about it, and attempting to understand what I was going through, or asking how they could be supportive, they instead pulled away. Yes, it initially hurt my feelings, but at the end of the day I have learned that I’d rather surround myself with supportive people. People who want to be in my life, not those who feel they have to be. I think that goes for pretty much everyone, healthy or not.

I’ve personally found, though, that support can be a double-edged sword. You would think that anyone going through an intense illness, like mine, would welcome support of any kind. Through the assumption that any help at all is still helpful, right? WRONG. Support and help is only helpful if it comes from a good place. However, in my personal experience, support is often not without strings.

I welcome and appreciate any kind of support towards my person, my illness, my newfound career, and my journey in general, as long as that support is given freely. What I mean by this is that it’s given without expectations of a reward, or a guilt-laden reciprocation. Just like the quote says, “I don’t engage in acts of kindness to be rewarded later,” I don’t want to receive support with strings attached. An example of this might be a ‘You scratch my back, I’ll scratch your back scenario”. Or making comments like, “Well I helped you with that one thing last week, so….”

No one wants to feel like they’re being used. But expectations put on support is just that. It’s support with strings attached, and I don’t want any part of that. If you need help with something, just ask. But thinly veiling it as “support” basically makes the receiver feel like shit.

If you want to do something nice for me, or anyone, then do it. Not to get something back from it, or to make yourself feel better by showing others how “supportive” you are. If you want to be seen as a good person, then do good things. And leave it at that. Be kind. Be generous. Be good. Not for others. For YOU.

Giving me support in my illness isn’t a competition on who can do it better. The best way to support me while I’m going through this hell is to just be there. Ask me how I am. Ask me if there’s anything you can do. Ask me if I need help. Ask me if I need a ride somewhere. And listen when I tell you. Listen to what I’m saying to understand, not to reply.

I feel like everything has become a lie recently. Like suddenly I’m this vessel to be used to make others look and feel better. Like “Hey, did you notice, I’m being supportive?” Or, “Look at this picture I posted of me being so supportive!”

Supporting me isn’t a competition. I’m a human being, dealing with an incurable, debilitating disease. I’m just trying to make it through each day, each week, and each month, without landing back in the hospital. I just want a life I can be proud of, and get up for each and every day. Want to feel good about yourself, too? Do something good without thinking about who it benefits, and I’ll continue to do the same.

 

 

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

Marking Time

I often find myself thinking a lot about time. Not time in the sense of watches and clocks, but more as how it relates to me, and how it passes. For someone with an illness or a disease, time can mean a lot of different things. Time can mark minutes til your next medication feeding, days until another doctors appointment, weeks between ER visits, or years left on your life clock. I’ve been thinking about how precious my time is. And how limited it can truly be.

I marvel at how my time is perceived by different people around me. A family member made a comment to me the other day about how well they thought I’d been doing in the last six months. I found it to be such a strange observation, as I felt the last six months had been fairly brutal on my body and mind. Since January I had been in the ER five times, broken three ribs, had one particular episode where I was very close to almost dying, and had sustained a lot of mental stress surrounding my filing for Social Security Disability Benefits. How did that appear as doing well?

I guess it all depends on everyone’s perception of time. For the person who thought I was doing A-OK, well, I guess that was to be expected since they only saw me on my good days. No one wants to visit or support during the bad days, so most of my family and friends only see me on manageable, low-pain days. And if there were more of those days in their memory, then I guess a lot of time had been spent with me on good days. At least they were showing their support, however, by wanting to see me. They may have had a different perception of how I was actually doing, but at least they made time to see me often enough to draw that conclusion.

For my mom, who is my primary caretaker, my time has been marked as not so well. She sees the good, the bad, and the ugly. Now, in saying this I’m not inferring that my last six months has been a torturous journey. I have certainly had my good days, maybe even good weeks. But for us, the time marked is seen through a different pair of lenses. While this part in her life was definitely not chosen, my mom has done extraordinarily well in her role. I may not have even made it through to this time and place if it were not for her. My mom always has time for me. She understands more than anyone what I’m going through and does everything in her power to help and support me.

A friend of mine was recently saddened by a situation involving some of her close friends. It was made known to her, and apparently not in a nice manner, that  her presence was unwanted at a social gathering. Understandably, she was devestated by this. But upon comments from concerned friends, she lamented that while their behaviors were unsatisfactory, the people in question were still her close friends. I understood exactly where she was coming from regarding letting bad behavior slip by when it concerns people your known a long time. While having not dealt with the exact same scenario, I have on many occasions let people walk all over me, or treat me unfairly, only because of our history and the time spent knowing them.

The whole ordeal gave me a lot to think about, and actually plagued me with thoughts on it for a few days. My time, more so now than ever before, is precious. Because of this, I want to surround myself with people who want to spend time with me. Not because they have to, or because they feel obligated, and especially not if they feel guilty. But real time spent because of love, friendship, and support.

My lens, much like an hourglass, views my time like grains of sand, slipping through my fingers at the beach. I see it in front of me, clear as day, and yet there is nothing I can do to stall or slow it. And one day, the sand will all be gone, along with my pain.

 I have an old friend who works extremely long hours, with little to no breaks, and often for weeks at a time without a day off. She is very dedicated to her work, so her full schedule while hard, is not a deterrent. Because of this, and the fact that she travels a lot for work, we rarely see each other, often going months between visits. However, she always commits to making time to see me and catch up whenever she can, sometimes sacrificing her only day off in weeks to drive to my side of the island to take me to lunch. And when I object, which I often do as I’m concerned she doesn’t rest enough, she always tells me that

“You make time for the important people in your life, Christine. Actions speak louder than words.”

I cannot agree more with that statement.

I’ve always been a big ‘people person’. I have a lot of friends, a lot of acquaintances, and I’m constantly meeting new people. And while my disease has changed my life a lot, and I’m unable to make as much time as before to accommodate seeing all my friends, I make a pretty good effort. I’m pretty good at keeping to my social engagements, and even if I’m ill and have to cancel due to a pain flare or last minute doctor’s appointment, I almost always reschedule for the next day or the closest next time available.

I have someone else in my life, whom unfortunately does not make time for me, despite their insistence of how important I am to them. They make plans with me often, and yet there is always a last minute cancellation, with apologies all around, though sometimes there’s no explanation at all. As much as the world is in a rush, there is always time to make a quick call, apologies can take a few sentences at the most. Hell, they can even be texted. Anyone who says they don’t have the time is lying.This person often makes it very clear that I am to drop everything to accomodate them when their schedules clear, however if I ever have a request or an invite, they have no time for me. Frustrating… I can’t stand flakiness..

Actions speak louder than words.

Here’s where marking time becomes important. Whether you’re like me and have a debilitating disease, or you’re a regular Joe Schmo, your time is important. Your life is important. So the people you give your time to are also important. Why do we give our time to so many people who make it clear that it’s not as important as them and theirs? Why are we wasting our efforts on people who don’t return our love and support?

Is it because they’ve been around a long time? Does length of friendship or family history make it ok for others to walk all over us, or hurt our feelings? The answer is no. Family and friendship mean nothing if love and respect don’t go hand in hand.

Time is important no matter where you are in your life journey. We respect time, and in turn we should respect the time of others as well as ourselves. I realize that while my time may be limited, and my life span will unfortunately be cut shorter than others of my generation, my time is still important. So I need to surround myself only with those who want to play an active role in my life. If you truly believe you are an important person in my life, well… Prove it.


 

 

 

Thanks to all those who continue to read my blog and have supported me throughout my journey with Rheumatoid Disease. If you like to help support me on a final basis please visit my page at http://www.gofundme.com/sixthousandsteps

Mahalo

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

 

 

Me, Myself, and I

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.

Should I or Shouldn’t I? A Dilemma of My Disease

When I opened my email inbox this morning I had a new article from Psychology Today, an online magazine that I subscribe to. The title of the article was “Should I or Shouldn’t I?” The Dilemmas of Chronic Illness, written by Toni Bernhard, a fellow victim of a chronic disease. The entire article was like an insight into my brain,  basically discussing the day to day difficulty we chronic illness patients go through trying to keep up with the rest of the world. I’ve personally dealt with these questions in my own l life several times, so I’ve taken the same questions Toni addressed personally in her article, and have answered them with my own opinions/feelings here. Perhaps it will provide insight into my life and actions that friends and family have wondered about..

 

Do I accept an invitation from a friend to get together or do I refuse it?

For me, this really depends on how far out the invite was received. If it’s weeks in advance I tend to tell the person that I’m interested in spending time with them, however I don’t know how I’ll feel that day so let’s make the plan tentative. I don’t want to flat out refuse an invite in case that person writes me off, and I don’t receive further invites. But at the same time, I hate being flaky. I would prefer a plan be tentative so if I’m not feeling well it was already suggested that I may not be able to attend. To be clear, I love spending time with family and friends, I just don’t always know how I’m going to feel.

 

Do I tell family and friends how I’m faring with my health or do I keep it to myself?

Sometimes, I feel if I talk about myself I’m worried they are tired of hearing it. My chronic disease is is a large part of my life, so the reality is if someone asks me how I’m doing, they are asking about my health. I worry about sounding like a broken record, but if I don’t talk about it, I’m isolating myself from others. My pain therapist often stresses how important it is to talk with friends and family about what I’m going through so I don’t risk getting depressed or bottling things in. Though, even with his advice, I find myself couching it a lot. Not telling people the true extent of what’s going on because I don’t want to sound like a complainer.

 

Do I try to look my best when I’m around other people or do I let my looks reflect how I’m really feeling?

If I try to look my best, I’m concerned that people will misinterpret the state of my health. I’ve always been really into makeup and fashions, and since becoming sick I don’t have the opportunity to dress up much anymore. So on days where I feel even remotely energized enough to make the effort, I tend to want to put makeup and a cute outfit on. But is this sending a message that I feel totally fine? Because there is never a day or even an hour where I’m not in pain, and or feeling the affects of my disease.

But if I let my looks reflect how I’m feeling, it usually brings my spirits down. I hate leaving the comfort of my home feeling dowdy and unkempt. Sure, I look exactly how I feel, but that means I look like crap. It brings my morale down and opens me up to more unwanted criticism, such as “Wow, you don’t look so good”, or “How come you don’t put some makeup on to hide those dark circles?” Vicious cycle.

 

If a special opportunity arises, do I go beyond what I know my body can  comfortably handle or do I play it safe?

If I participate, I could wind up stressing my body or becoming too exhausted, landing me in bed for days. If I don’t participate, I could be missing out on fun or uplifting life experiences that can keep my morale up.

I was recently invited to a fashion show style event, that some friends were running. It was planned weeks in advance and I was a tentative guest, not knowing how I would feel on the night in question, so I didn’t say yes definitively. I knew the event would be a lot of fun, many of my friends were going, and there was a lot of excitement surrounding it. However, I also knew the event would be a high energy affair, and be a late night. Even throughout the morning of the day of I was on the fence on whether I should go, but leaning towards yes, as I had been feeling quite isolated.  Unfortunately that day I had a lot of doctors appointments as well as clinical testing, and I was exhausted by late afternoon. I knew I could probably take a nap and still really and go to the event if I really wanted to. But knowing me, and knowing my body, it would have been a mistake. One that I may have had to pay for days on end. So I didn’t go. Was I said that I missed a fabulous opportunity to see a great show and socialize with friends I hadn’t seen in awhile? Of course! But health comes first, and I have to trust my instincts.

 

Do I try a new treatment someone is urging on me or do I take a pass?

I’ve talked several times about how often people urge me to try new diet schemes or anti-inflammatory treatments that they swear worked for their best friends hairdresser’s accountant and could for me too. It is very frustrating to have things like that constantly pushed in my face, especially when the person in question isn’t sick themselves or haven’t done the so-called miracle cure diet.

So usually in this case I take everything with a grain of salt. Sometimes I’ll do research of my own, looking through various websites and articles and reviews to see if these treatments really do work. However, I have to constantly remind these people who mean well that just because a treatment or diet plan worked for one person, it doesn’t mean it works for everyone. I mean if that were the case, our country wouldn’t have an obesity epidemic, because everyone would know the one and only diet that works.

I appreciate the sentiment and wanting to help me with my health, and my chronic pain, and my weight gain. But I’d prefer if everyone would just let my doctors do their jobs, and keep the “helpful suggestions” to themselves.

 

Do I pursue a new interest even though it exacerbates my symptoms or do I stick to my old routine?

If I pursue it I could be opening myself up to new interests and entertainments that can enrich my life. It could boost my morale, lower my depression, and have an overall positive impact on my mental health. However, depending on what it is, I could be causing myself more physical pain and exhaustion in the long run. Which in turn means days of bed rest where I’m exacerbating my symptoms, prolonging the pain and denying myself fresh air and movement.

If I choose not to pursue it then I could be cutting myself off from a healthy lifestyle change, that could be good for me long term. I’d also be passing up the chance to focus on something other than my health for a change, which in turn raises morale. It’s a slippery slope.

A great example of this is my adult coloring. Last year I was introduced to the now very popular phenomena of adult coloring. They now make hundreds of beautiful coloring books for adults with intricate pages of all sorts of designs. I lean towards the paisley and mandala varieties. I started out slowly, with just one book and a small box of colored pencils. But I loved it! And started doing it more and more, obtaining more books, a larger pencil set, and electric sharpener. I now have a coloring box that sits next to my couch, filled with 5 books of different designs, two boxes filled with a variety of colors, and two binders filled with completed pages. The coloring, while a great distraction from my disease, also calms me and is very therapeutic.

However, there is a downside. I have a chronic pain disease that mainly affects my hands and feet. And after an hour or so, my hands get too cramped to color anymore. But I love my hobby so much that sometimes I ignore the pain and discomfort and push through until I literally can’t move my fingers anymore, and blisters have formed at my knuckles. Every time I do this I know I should stop and just color another day. But my ocd pushes me to finish the page, and it’s so nice to do something so enjoyable.

I guess it’s different for everyone. But I’ll admit that I do cause some of the pain I contend with myself, just so that I may enjoy some creature comforts.

 

I understand that everyone deals with their disease differently, some things being harder than others, and it can be a challenge. Life is a challenge. I know that I just have to take one day at a time, step by step, and that I’ll find my footing and my path eventually.

 

If you’d like to help support me in my path and journey please visit my website here. Thank you for reading and sharing me experiences.

Sanctuary

During my weekly pain therapist visit yesterday, my doctor and I started to discuss why the time I spend alone is so important to me. I shared that it was just nice to enjoy the quiet, that I wasn’t used to having a space to call my own. Indeed it was true in the sense that this is the first time I’ve lived alone in over 12 years.

The last time I rented my very own apartment I was living in Auckland, New Zealand, back in 2004. It had been right after winning that lucky scratch-and-win crossword, and I had found a cute, furnished, ground floor flat that I rented from an elderly woman living above. It wasn’t very big, the kitchen only boasted a hot plate, there was a washing machine in the tiny bathroom, and a line to hang laundry in the cold, damp yard. But it was mine. Mine. The first apartment I ever rented on my own. I loved it.

When I finally came back to the U.S. after my escapades in Europe in 2005, and decided on California, I couldn’t afford living on my own for longer than 6 months, and I eventually moved in with roommates. This was to be continued for five years until my boyfriend of the time and I got our own place. But living with a boyfriend is not at all like living on your own. You still share a kitchen, which means you’re the only one that ever does the dishes… You share a bathroom, which means you’re always picking up someone else’s wet towels off the floor… You share a bedroom, which means the bed only gets made by you…. Or at least that’s how it was for me.

When I moved back to Hawaii in 2011, alone, I went right back to living with roommates again. It wasn’t until last August when my living options ran dry, and I moved into my apartment paid for by the generosity of others, that I was finally on my own again. And what an astounding luxury it was!

What a treat to be able to go to bed whenever I felt like it, and not be kept up by a tv in the other room, or a loud discussion though the walls. How lovely it was to use a kitchen filled only with MY appliances and cookware. To make a cup of tea at 2am and not be worried if I was waking anyone up. The sheer joy of walking completely naked from my bedroom to bathroom without fear of discovery. These were things I’d never take for granted again.

My doctor pointed out that I had finally obtained my own ‘sanctuary’. Yes, what a perfect word. A sanctuary is exactly what my home is. I adore coming home from wherever I’ve been and relaxing on my couch and turning the tv on to something I want to watch on Netflix. I love laying down on my bed to play with my cats and taking an impromptu nap just because I can, and because my body demands it. I never have to worry about having clothes on, or working off of anyone’s schedule but mine.
I love my bedroom, and the way my king size bed takes up amongst the entirety of the space. I love my shower and the fact that no one makes fun of my seven different shower gels (variety is the spice of life). I love my gas stove, and cooking whatever I want to eat. And I love love love the relaxing nature of my little living room, with my newly acquired used couch, piled high with blankets and cushions for ultimate tv viewing pleasure.
It’s mine. All of it. And I have no desire to share.
There, I’ve admitted it, it’s true. I rarely invite others over to my home. If you have spent time there you should really take it as a very good sign. Because I like my space. I like everything in its place and not to be moved. My cats love their favorite spots on the couch and coffee table. And together we share our domestic bliss.
Of course I have friends and family over from time to time. Just last weekend I had a married couple over that I know for pizza and videogames. And what a fun day it was. Even more fun when the day had ended and my sanctuary was mine alone once again.

My home is my sanctuary. My sanctuary. I am comfortable there, so please help me stay there.

If you would like to visit my donation page to help me stay in my sanctuary, please visit Christine Lilley’s Life Fund. All donations are greatly appreciated. Thank you.