My Last Big Struggle

Having my Arthritis is still a big obstacle every day in all aspects of my life. It has made me think back to time when I had another life changing obstacle, but eventually overcame it and that's why I have a lttle hope when reminiscing about it.

Feeling old at 35 has forcibly brought me to be humbled and so I wanted to share a true story of the last time was humbled.

"From humble beginnings come great things". This is one of the most inspiring and beloved quotes describing our favorite stories of earnest perserverance; the rags to riches story. It's practically the American promise and entails a lifetime of struggles and hope in exchange for wealth, especially for those coming from other countries to begin again in America and end in abundance. While all of that is divinely encouraging, however, I want to talk about a story that began with riches, but ended humbly- Humble Endings.

This is my story- a little backwards because it ended, rather than began, with humility. The "riches" aspect was becoming humble- that was my reward. I guess you could say my definition of "riches" changed during this time period so this became my riches to riches story.

Almost 10 years ago I was considered a hard working woman who had it all; new car, new apartment, new designer dog, new clothes every week, This wasn't too far off from how I started life either- I was sheltered by my parents, never wondered if life could get any better, and all I knew about was wealth and having plenty. Continuing my adulthood in this way easily maintained a naive equation that perserverance = riches = happiness. I had it all figured out until I met a humble man at the local gym.

This man, Iven, was a hard worker in the gym- I admired that trait. I also ran into him where he worked, which was a small nutrition store. He always seemed so shy around me and I could never tell if he was just completely uninterested in me or maybe a little curious, but genuinely shy- another trait you don't see too often in a handsome man. There was small talk between us, but most disturbing was when I left each time, he had a look in his eyes begging me to never leave, like it was always the last time, like I had been with him forever, but somewhere else, maybe some other time- who knows? But the feeling was haunting me.

Months went by and I was thankfully beginning to be assured he was not interested in me romantically because he never pursued more than simple conversation. Yes, this was a relief to me; after all I had everything I wanted and nothing to complicate it. My mother, on the other hand, who heard me speak of Iven periodically was insistent. Usually she respected my "butt out" rule when it came to my love (lack of) life. She blatantly told me, "You must find out if there is something more. Just ask or give him your number". "Ha" I said defiantly and marched right into the store where he worked and gave him my number. My mom had the last laugh because I finally did it- she was right.

To my surprise Iven eagerly, refraining no excitement whatsoever, accepted my number and lit up like a little boy on Christmas morning with a brand new bouncy puppy. He asked me to go on a picnic with him and that was our beginning. The date picnic was perfect, but still a nagging, haunting feeling lingered somewhere behind the scenes to this real life love story. I believe we discovered we were soul mates that first day complete with the same birthday. As cliche as it sounds, looking at him was like looking in the mirror- our souls were identical. We both shared the same values, the same interests, and being with him replaced needing anything else.

His natural innocence reignited what I had lost, maybe never known, about the world. He was not a rich man nor had he ever been- he grew up without a father and was still in the midst of his humble beginnings. Even though I had enough money to pay for our ensuing dates, he insisted on paying- working hard on his grandfather's farm, besides his regular low-paying job, to "Take me out like a lady", he would say triumphantly. He had more happiness in his humble life than I ever knew in anyone.

From the day he accepted my number, he never failed to call me and see me every single glorious day for months until one Monday- August 6, 2001. The day grew later and sadder- I could feel it. I had finally put that haunting, uneasy feeling aside long before this day, but it returned eager and suffocating. My universe got smaller somehow and every step I took was overwhelming, heavy with dread. I finally got my call that evening, instead from his mother who stated, among other things that I don't remember, Iven was gone. "Gone, how"?, I questioned as if didn't know, as if I didn't know the moment I met him. A drowning accident- he drowned from the turbulence of a waterfall earlier that day, swimming with his cousin and best friend (who survived). Oddly, the haunting feeling instantly disappeared because it came to full realization.

His passing and the days afterward were a blur, sleeping, praying for nothing because what I wanted could not be returned to me, more crying, losing enthusiasm for what used to make me happy; my car, my place, money, etc. One month later, listening intently to a lecture in my college World Religions course about Buddhism, I woke up from my dazed grief. My own philosophy was born.

Inspired by Buddhist teachings, I gained valuable insight; Everything you can (and have the power to) hold onto is not worth holding onto, but everything you want the most, worth life itself, is not possible for you to hold onto. Riches only fool us. They fool us into believing they are a destination, but they are nothing, not even close to where we want to be inside of us or outside of us in this universe.

Hard work does equal riches, but not always of the monetray kind. There is a lot of hard work to be done within us too. I later learned from Iven's mother he was not supposed to survive when he was born- he had lung and heart problems. When he overcame that, the doctors told him he would never run, but he did and played sports too. His hard work was not soley for money, it was survival too.

Also during my grieving, the 9/11 terrorist attacks occurred in New York so I was not the only one learning this humble lesson- it made it more powerful and effective when the whole country was grieving as well. With everything happening, and without knowing what exactly I was doing, I gave up my new car for an old completely paid for one, gave up my new apartment for a meager studio, and all my decorations and furnishings, donated clothes to Good Will, and everything else money had once made me happy with. Things I used to view as uncomplicated were now cluttering my life. I kept my dog, my 1 fish, some cooking utensils and signed a 1 year lease to my studio. When I later tried to make sense of what I did, I believe it was in honor of Iven, perhaps giving his view of life a try and hoping to hang onto his humble and happy presence.

I made it through the year- happily, I moved on- inevitably, and never lived my life the same. It marks a distinct time of spiritual awakening, infinite depth within my small corner of the universe, freedom to live without a strict or typical definition of "riches", and most of all humbled to my knees. Each person must learn their own lessons and for me this was a tragedy that finally reached a place inside me making me comfortable enough to really begin life, but knowing the ending will once again bring me to be humbled.

Support

When you have an illness or disability, support takes on a whole new meaning to you. You learn support comes from unexpected people, needing support can make you feel weak during a time when you want to get stronger, and support always has limitations. Support is usually a back-up system for people, like insurance, but for me it's a necessity and way of life like food and water.

With my RA, I've lost enthusiasm for being with friends, maybe them or maybe me just trying to lessen the strain on our relationship. I know I've been known to walk out before someone can walk out on me. Part of me doesn't want to test relationships for fear of the inevitable strain, end, or rejection.

I want to talk about my issues with RA to my "normal" friends, but I know they don't understand- not even close. They look like they feel sorry for me, but the look on their face just makes me see how pitiful I must look to them. Although, I don't want or expect them to understand, I still want to let them into my life. I think some of the strain comes from the mere reason people become friends, and that is having things in common. I don't have RA in common with any of my friends.

I've touched base with online RA commmunities and chatted with people who have RA and know exactly what I'm going through, but it's not the same. It feels like that's all we have in common so the relationship aspect is empty.

Ideally, good friends for me are ones who don't mind listening to me on a bad day, but also don't make me think of my bad days.

Take this, and this, and that, and this for that......

That's what a doctor, or a Rheumatologist, sounds like to a patient (me). My journey with RA began almost a year ago and I've only taken one drug for it- Prednisone (steroid medication), but doctors push drugs like crazy. It's as if they are covering up for their shortcomings; not knowing much about RA. They focus on and want to help with RA symptoms, but prescribe drugs that make the rest of your body much worse, and then guess what- you need more drugs. Don't get me wrong, I hate taking prednisone, but without it I am a walking disaster. HA, scratch the walking part, I can't even barely walk without it.

I have evaded many drug pushing Rheumatologists by simply saying I'm trying to get pregnant. Most, almost all, of the drugs for RA are not suitable for a pregnant woman. This has been my line, but it still doesn't stop them from pushing the drugs. I now view doctors totally different- they seem like drug experts rather than doctors of illness for sick people. I never get my questions answered- these questions are all general RA questions, things any proactive patient would ask. They really know very little about the disease, and so much about the drugs. Am I the only one that this seems strange to?

All of you healthy people out there beware with falling back on the comfortable notion that doctors are experts and know best about your body when you get ill. I used to rest at ease thinking if I get sick, the doctors know what to do- ha, totally wrong. You have to become an expert on your body- you can do that now while you're healthy or you can wait until you have health issues. In order of hiearchy, we get sick and depend on Docs to help us, then we depend on God (for some of us), but you also have to believe in your own body and healing yourself or at least becoming very proactive in your health and finding a Doc that doesn't look at your proactiveness as a pain in their butt. While God may be looking out for you, doctors are not.

I asked my Rheumy (Rheumatologist) about a specific drug, Enbrel, and how I've heard it can cause Lupus or MS or even Lymphoma cancer. The Rheumy replied that it has caused lupus in a handful of her patients. That is supposed to make me feel better- "only a handful"? So if my Rheumy has had a handful of patients with this issue, that means it's possible all other Rheumy's have had some patients with this problem too. Add up all those handfuls and that's a significant bunch of patients who just wanted to improve their RA symptoms and got Lupus to boot.

I'm still only on Prednisone and various vitamins- extra calcium and vitamin D. I went to my Rheumy yesterday and again evaded the drug pushing. She warns me that I might be deforming my joints as if that should scare me when I compare it to getting another autoimmune illness or cancer or deadly infections (all caused by RA drugs). I told her my husband and I weren't really trying this past couple months to get pregnant, which is true, but that we were going to start trying again "so no drugs for me".

I asked to be tested for vitamin deficiencies and hormone levels. No doctor has ever suggested these tests along my RA journey but I had been doing some research and learn these are important tests for autoimmune sufferers. RA is significantly more prevalent in women. Could be hormones. I know my RA symptoms get drastically worse during my menstrual cycle. Could be hormones.

I finally stated my goal to my Rheumy in a way that made sense to me, maybe even her too hopefully: "I want to meet the drugs halfway. I would like to fix some of the problem on my own or with holistic medicine/treatments and some with drugs- IF I HAVE TO." Many people with RA are on tons of medication and I don't want that. Goal stated!

How Are You Doing?

UGH!!!
I'm beginning to hate that question- "How are you doing"? not specifically the words, but the delivery from other people since I've had RA. Whenever I see people who know I have RA, they ask "How are you doing"? I should be happy they care to know or even ask. However, this question is now asked in a way that assumes impending doom. The tone in people's voice is like they're already expecting the worst. If someone asks this question it usually has a light tone ending on a cheery note, but now this question is like hearing the last/left deepest chords on a piano- da da da doom. How awful! I must be doing awful by the way the person is asking. "I was doing ok until you asked that question". At least I thought I was ok.
How
are
you
doing?
It
just
keeps
getting
deeper
and
lower
like
I
have
to
dig
my
way
out
of
a
hole
just
to
answer..................
How am I doing today? I'll tell you the real version, which I don't share with most people. Well, my joints are really hurting. I tried tapering my Prednisone by just 2.5mg but I'm back to having too much pain. Too much pain for me is when my larger joints hurt too much to sleep well, like my hip or my knees. I can handle my hands hurting, my feet, or even my one bad elbow.
My daughter decided to get up early today because somehow the evil 2yr old in her knew mama was having joint problems and would have liked to sleep in. She got up 2 hours early- what are the chances? So I'm going to count the hours away and try to painfully entertain my daughter.

It's Kind of Like Retirement

My life with RA is oddly like an early retirement. Lately I've felt I have a lot in common with older folks.

I had to learn how (and accept) slowing down and not being able to do as much as I used to.

Asking for help. I have the nicest coversations with baggers who help take my groceries out to my car. I bet many people don't take the time to notice them, let alone talk to them.

Taking advantage of a good sale on arthritis and joint balm.

Who can be rude to the elderly? Can't be rude to the disabled either.

Knowing my pharmacist by first name.

Nap time!!!

Speaking my mind, no wasting time with schmoozing or niceties.

Getting paid monthly by the state.

Watching others go running with their dogs while I sit on the front porch sipping sun tea not feeling a bit guilty.

Needing a couple hours after waking up to warm the stiff joints and maybe an excuse to stay in my pajamas a little longer.

What's next? Maybe cutting my hair ultra short, trying my luck at Bingo, and getting super big sunglasses. I'm not going that far yet.

Don't feel Sorry for Me

You might be surprised to know that I find more positive about being disabled with Rheumatoid Arthritis than negative. I was just thinking about what I'd be doing in my life now if I didn't have arthritis (RA) and the answer would be a resounding- Everything. I'd be my usual perfectionist self. I'd be working, stressing, depending on caffeine and junk food for my highs, feeling guilty for not exercising, and most of all not getting to be with my daughter much.

I mostly love my life right now. I have my ideal sleep schedule (can I just mention, I feel decadent when I hear my neighbors leave early for work and I'm not), I take a nap most days, when I need a break I have to take one, I eat healthy and exercise for health and not vanity, I have time to be playful and creative and enjoy my daughter, I have money coming in. I'm disabled but not to a point that I'm not thankful or not able to enjoy life.

When I think of the time that I'm not working (8 hrs a day x's most days of the week and year) or stressing, I am actually getting more out of life than the average person. It is known that RA may shorten one's life span but really it's added to mine. Going to work for other people was not my idea of living- I did it and it was sometimes fun and rewarding. Getting 8 more hours a day to live my life outside of office walls has expanded my life.

I'm thankful so don't feel sorry for me.

Milestones

For most, the turning of a new decade is a tough birthday- not for me. For some reason turning 25 was hard for me even though I was the most physically fit, emotionally happy, and the best person I could be at that age. Turning 30 was a piece of cake because I was young for that decade. 25 was hard because I was nearing the end of my twentieth decade so turning 35 was hard this past week- I am now on the older side of 30's.

35 is a lot different for me than 25 as I'm sure it is for most people. I am now proof how much life can change in 10 years. At 25 I was extremely physically fit and I had plenty of material possesions. At 35 I am pre-approved for getting state disability and have had to cut back on material possesions because I can barely keep up with the medical bills for my condition. Wow- I've turned 35 and disabled in the same year- it's a lot to take in.

It seems so silly to have made plans in the past. Life changes so quickly, sometimes so drastically, and people keep making plans for next week, next year, and of course the 5 year plan that I just want to laugh at.

Michael J. Fox was diagnosed several years ago with Parkinson's Disease. Obviously this was life altering for him, but he has learned some valuable lessons and some I would like to quote: "I am careful not to confuse excellence with perfection. Excellence I can reach for, perfection is God's business". Wow, I have been such a perfectionist all my life and now facing a disease where there is no explanation/cause for, it makes me wonder if I did some unnecessary stressing. "My happiness grows in direct proportion to my acceptance and in inverse proportion to my expectations." Some days I take pills and they help and other days they don't, but I just push through. I can't do a lot about the pill's effectiveness that day, and I will be in pain- that's everyday, but I won't stop my life or wear a frown all day.

Illness as Gift

The first time I heard someone refer to their illness or cancer as a "gift", I was in shock and disbelief. How could the negativity of tragedy transform into a life-changing positive? It wasn't until my diagnosis of Rheumatoid Arthritis that I realized it must be turned into a positive. I will not suffer for no reason. I am not a cancer patient or survivor, but I have found the gift in living with a chronic and painful illness.

The Good
Those who live with good health simultaneously fear that ill health is lurking around the corner. This fear is about as close to feeling alive as we get- we live as if being alive is fearing death, avoiding illness, and seeking pleasure. I now think that being alive is accepting pain and suffering and appreciating the good days more. Because of my illness, I am in a beautiful state of transformation while others either live in fear or on autopilot.

People who have suffered possess an astounding gift to offer others in the way of support (groups) and first-hand information that doctors can't supply. They can be an inspiration to others.

Children are effected in positive ways when they grow up witnessing the challenges and courage of a parent or close relative that has an illness. My 2 yr old daughter knows that I have limitations and my hands hurt or are "sick". Many children of parents with an illness grow up to participate in foundations and charity specific to the illness that effected their parent. It's the best tool for teaching compassion.

Humility; needing help from others and asking for it, becoming acutely aware of our limitations, and asserting our boundaries. I can't keep a running count of how many times I hear, especially women, about how much they accomplished in one day, one hour or how much they have yet to accomplish- it's exhausting. Many autoimmune diseases are found in women. Coincidence- oh, I don't think so. If you saw my Friends' Facebook posts and how many of those women and mothers who practically climbed Mount Everest before breakfast, it's no wonder we exhaust ourselves to illness.

Putting our energy into something meaningful. How much energy gets wasted on the little stuff? Apparently none of us learned from the book series, "Don't Sweat the Small Stuff" because I think that's easily an epidemic creeping alongside obesity. The prblem wit htelling people not to sweat the small stuff- they don't know what small stuff is. They think everything is terribly important. I love this quote: "The sign of and approaching nervouse break down is when you think everything is terribly important."

Having an illness forces you to put your energy into only the biggest bang for your buck- it's the way to live. Our bodies are mechanical in function, so why is it so different that just as the amount of gas going into our car can be measured exactly by what we get out of it (or mpg) to how much energy (from our bodies) we put into something being how much we get out of it. I can argue that's why we're in debt too. We put so much of ourselves (and family sacrifices) into our work and the paychecks don't reflect that so we spend money we don't have to feel like we are getting our worth.

Getting to know your body; When we were children, we had our mothers around to tell us when to put a jacket on, to make our Dr's appointments, when to take our medicine, etc but somehow when we grew up we lost our ability to prevent or recognize symptoms, take precautions, and generally take care of ourselves. We ignore the bad until it gets worse and we have a decent excuse to be excused from our relentless duties.

Pulling the weeds; Illness is negative in nature so most everything else needs to be positive just to keep balance or I'd rather refer to it as sanity. This means focusing on keeping positive people in your life- letting go of bad relationships and reeping the benefits. Focus energy on healing and excusing those that drain our energy from our life.

I read in a book about a doctor who stated the secret to longevity is having a chronic illness- it's truly a blessing in disguise. Why? Because it forces you to listen to your body, treat it well, be more aware of what toxins and the environment do to your body, and harness stress and emotions before they become more serious. Chronic illness flare-ups give you distinct warning signals. People without illness have a hard time listening and following through taking care of themselves ultmately leading to something worse than just an illness.

A Letter To My Friends

I'm sorry you don't understand my illness- I don't understand it yet either, but I have to live with it regardless. I know it's changed my life, not yours. I'm sorry I can't babysit your kids at a moment's notice or make plans- my illness doesn't care if I make plans and it may be a good day or bad one. I'm sorry I can't run marathons with you or go camping or party or have some drinks with you. Even though I'm young, I just can't keep up with you. I'm sorry I talk about my illness- I know it doesn't pertain to your life and it's probably depressing for you. I try to tell you about it to raise awareness. I hope you can learn from my experience that being super mom or career woman of the year is not worth the potential health risks. When I see your Facebook posts, I get worn out just reading everything you've done in the last hour. Sometimes I feel inadequate because I used to be able to do everything all at once, but look where it got me. I've been forced to slow down. Most of the time, though, I feel empowered that I finally have a reason to say "no" because my body has a direct line to my brain and lets me know where my boundaries are. Maybe you feel jealous of me because I have boundaries and you are still trying to compete for mom of the year title while I'm at home actually enjoying life a little bit slower, at a pace that we humans were meant to go. Leave fast up to the 2010 sports cars and leave mutli-tasking up to computers- I will live an authentic life at a speed where I can feel, learn, and experience more. I may not have a Facebook post every hour updating you about how I've climbed Mt. Everest while doing laundry, cleaning the house, running a marathon, and working a 12 hour shift, but that is proof I'm enjoying life because I have to. I sip my tea while you gulp your espresso, I practice Tai Chi while you run a marathon, I don't have a to-do list anymore and your life is a to-do list, I'm not amibtious in the way of earning lots of money and esteem so I'm not the friend you can brag about knowing. I'm a different person now, but still a good friend even though I can't prove it to you by babysitting or helping you move, but a friend's true job is to talk with you when you experience a time in your life when you are forced to slow down. I will be the one friend who truly understands. Until then, I hope we can still be friends despite our new differences.

Love and always,
your friend on this journey

A Change of Seasons

Spring is coming. The nice weather and sun should cheer me up. It does, but not without hesitation and a sinking feeling in the back of my mind. It's bittersweet. My Rheumatoid Arthritis is manageable right now with some steroid medication, but I'm certainly not even close to being considered active. I feel so weak because one wrong step and I could injure myself easily. I have no confidence in playing outdoors- it's actually scary. The weaker my body feels, the bigger, and more intimidating, the outdoor world seems.

Spring and summer used to make me excited to go outdoors and walk, hike, play, and explore. This year I have a new body to get used to- I'm not the same as last year. I have no clue what my limitations are and I have that sinking feeling I will soon find out and be a little sadder about the change of seasons.

I think every mother feels inadequate at times, but I just hope my daughter doesn't have to wonder or wish her mother was like other kids' mothers and could go and play anytime.