Birthdays and Anniversaries

February 4th, 2010 § 1

Photo by: Jerry

I love birthdays  - usually other people’s peoples birthdays.  In a way, it takes the focus off of me and I am able to draw my energy towards someone else regardless if there is a celebration or not. Looking over the past years or decades of their lives and seeing where they are now is always an informal learning experience for me.

I like anniversaries, because I am always amazed that two people can stay together 5, 10 years and beyond.  Two people that can work together when times are not ideal.  Though I don’t think being and staying married is a measurement of a person’s character, I still look up to people that can be dedicated to something, whatever it is.

Today is my mother’s 59th birthday and Steve’s parents 59th wedding anniversary!

Drowning

January 24th, 2010 § 8

Drowning in work that is.

Since the new year began, my daily to-do list piles up more and more.  Part of it is my 2010 goal to be more productive, and part of it is catching up on things that’s been left behind over the past few months.  I gave myself a “day off” on Dr. Martin Luther King Jr. day, but paid for it the rest of the week – and this was after I worked the prior weekend.  This makes working a typical 9-5 a little more appealing, (not to mention the added benefit of group health insurance and paid time off) though unemployment is still very high and even more impossible in my field and previous occupation.

I thought about going back to school, but just as I was feeling fourteen years ago when I had to decide what I wanted to do with my life, I still don’t have a clue now.  Every occupation that I’m remotely interested in is either saturated, moved overseas, I don’t have the physical qualifications due to MS,  or there is just no money in it.

Its hard feeling like I’m constantly in limbo when it comes to career, but I guess that puts me in the same boat with mostly everyone else in one way or another.  I do really enjoy Green and Chic, but I feel like I need a “safety net”  just in case.  A friend suggested talking to a career counselor.  That may not be a bad idea.

Have you ever consulted with a career counselor?  If so, how was your experience?

The Greatest Gift

January 7th, 2010 § 14

If someone were to ask me what would I take with me if I suddenly had to evacuate my home, the answer would be the album you see in the photo.

Every now and then, my mother sends me a “care package”.  Its usually underwear, skin care products, pajamas or random books.  When I opened the box she sent me a few days ago, a saw a beautiful album with my name on it.  Opening it almost immediately brought me to tears.  Its a scrapbook she made that chronicles my entire known family history, my childhood, my brother, father and mother.  There were photos of great grand parents and great aunts and uncles I have never seen before, pictures of my dad in his early 20s and even a page dedicated to my best friend in elementary school. I had no idea she even had those photos! Names, years, places – everything was listed.

Because my grand and great grand parents were born at home and many were orphaned as young children,  my family history is very brief  because records weren’t made and kept as they are today.  Even my dad didn’t get his birth certificate until he was an adult.  Knowing this emphasized to me how important it is to keep track of my family’s history.  Since there are so few people, there is no excuse.

Seeing the pictures brought both pleasure and pain. Pleasure from seeing pictures of me and my brother together, me and my mother together, and my and my father.  Pain from missing the relationship I always wanted with my father and other family members.

This is by far one of the greatest gifts I have ever received from anyone. When I spoke with my mother that evening, she told me it took her over six months to create it. I have never known her to be artistic, but this was an idea she had in her head for years and finally decided to take the plunge.  I cant thank her enough for this wonderful gift!

Its the end!

January 1st, 2010 § 4

Maybe I’m in denial, but I still cant believe 2009 has ended. A part of me still cant believe we’re already into the second decade of the 21st century.  I go though this at the end of every year: shock, sometimes panic and then anticipation as I head into the next year.  I know for many people, New Year Resolutions are overrated, but this is the perfect time for me to start.  Having just had an upgrade (birthday) in December from Carla 3.0 to Carla 3.1, it seems appropriate for me to make some changes – both minor and major over the next twelve months and beyond.

I would like to thank all my readers who’ve supported me since I started Beyond It All back in early spring.  I don’t have many posts so it would be a little redundant to do a bloggers style year end review post but you know where to find them. :)

Happy Near Year everyone!

Fwd: Fwd: Be very afraid! – Chain Emails

December 21st, 2009 § 4

Ever since my mother discovered the world wide web late last year, she has made it her duty to forward me every scary, alarmist email that’s sent to her from one of her buddies.  You know, the ‘boogie man is lurking behind the bush’ type emails that’s been forwarded about 40 times before it gets to you. These emails usually tells a brief story about a horrible crime that happened to a random woman, but somehow, you’re not able to find any evidence of this published anywhere.  Most of the time, I just ignore and delete these emails.  Sometimes I  research the stories so that I can respond to my mother telling her that its not true.  She then responds with a sigh of relief.

These modern urban legends may have a shred of truth, but they are mostly false and designed to scare the daylights out of individuals, mostly women.  Who or why these stores are made up and passed around, I do not know. I used to get these emails from random co-workers, and now my mother is sending them to me.   I remember there was one about the “deadly germs” on the bottom of your purse from when you set it down in a public restroom (or anywhere else).  I remember reading how horrible and nasty these germs are. The thing is, there are germs on the bottom of your shoes.  The same germs that many people don’t think twice about when walking into their homes with their shoes on.  These are the same dirty, non sterile floors that their babies crawl on.  Despite the odds stacked against them, they manage to live.

I think we  have enough real reasons to be fearful at times.   I don’t need to made up stories to keep me aware of the real dangers out there.

No more emails, please!

Body Image Confessions

December 4th, 2009 § 11

I was thinking about my body image a few days ago when I was walking home from the gym.  Looking over the years since I’ve became aware I have a physical body, I’ve never been happy with my appearance. I’ve had and still have my moments, but I’ve never been totally content. I wrote some of the self inflicted struggles I’ve had with this in a post back in the spring called My Own Worst Enemy.  I guess I should also say I am my own worst critic.

As I strolled though the neighborhood with my cane and small gym bag, I scanned my brain for reasons why I am  still feeling the way I’m feeling about my body despite the fact that I have bigger fish to fry when it comes to my body and health.  I outlined some reasons that started early in life in that post, and wonder if its realistic to resolve those issues as an adult.  Is it something that I have to keep working at?  Its obvious to me that simply telling myself “its in the past, move on” doesn’t work. I guess some people would  blame the media for my feelings, but I don’t watch much TV and the only magazines I read are trade magazines and journals.

I actually look at other women in real life and envy their appearance.  The thin woman who can eat what they wish – you know, simple foods like bread. Food and drink that wont show up on their waist line while I analyze everything that I put into my shopping basket and eventually put in my mouth.  The naturally slender woman who only has to do gentle Yoga or token cardio for exercise while I sweat  and strain at the gym and at home to keep a waistline.     I try to sweep those negative, useless, thoughts out of my head only to return in no time.

Like an addict that hides their addiction from others, I haven’t told many people my true feelings.  I guess its about time for me to seek real help for my addiction.

Three Things I’m Thankful For

November 26th, 2009 § 5

043View from my last home - Kensington, CA

As I sit home on Thanksgiving day listening to Verdi Requiem, I look back at those few years (2002-2006) I was in a classical chorus where we performed this piece.  I realized despite some major setbacks over this past year, I am in a much better place now than I was back then.

A few things I’m thankful for:

  • No longer living in the Bay Area – I was born and raised in the Bay (Oakland, CA to be exact) and it wasn’t until I moved to Portland that I realized just how uncompromising that whole area is to me.  If you cant afford an overpriced home to buy or rent, you’re living in a not so great, crime ridden area.  My experience was pretty black and white. I’m thankful I was able to live in a breathtakingly beautiful neighborhood during my last few years there, but it was getting difficult to afford it – especially on disability.  The Bay Area has it good points, but unless you are “set” (ie. purchased a home 10+ years ago, or have a really good salary), you’re out of luck.  I will enjoy visiting family who’s still in the area though.  Fortunately for them, they are set.
  • Fitness – Going though a multiple sclerosis exacerbation back in the early spring had left me weak and out of shape.  Because I wasn’t very active (not by choice), I lost muscle tone and stamina. I recently joined a gym in my neighborhood and go there four days a week now.  I haven’t feel this good in almost a year!
  • My sister – I have a half sister that wasn’t a part of my life until recently.  She’s my father’s daughter and I met her for the first time when I was fourteen.  I saw her one other time ten years ago when I got married and didn’t see or speak to her after that until recently before I moved.  Its  a shame because she never lived more than a few miles away from me.  Ironically, we are closer than ever now despite being hundreds of miles apart.  We talk on the phone at least every week, text message often and send each other small gifts and cards. There are eleven years between us (she older), but it doesn’t feel that way at all.  I look forward to seeing her again when she comes to visit us in a few weeks.

I don’t think these thoughts of have come to mind had I not put on the music that reminded me of my recent past which is a direct contrast to life now.

Goodbye 2009

November 22nd, 2009 § 6

I know I’ve been MIA over the past few weeks, but I am alive and well.  This is my first full holiday season since the beginning of Green and Chic and it has me fully occupied.  The business side of me knows its the end of the year while I catch up with my business bookkeeping and the web store holiday preparations, but the other side of me cant believe its already Thanksgiving time.

2009 went by in a flash.  With all the major changes in life with the diagnoses, having to leave my job, losing my benefits, the pregnancy – and loss, and relocating, I guess its a good thing this year didn’t drag its feet.

I think the only way I’m going to look forward to 2010 and beyond is to have some short and long-term goals.  Since the Multiple Sclerosis diagnosis, I’ve inadvertently put the breaks on setting goals (especially long-term) in my life though I don’t fully understand why. I guess fear have a lot to do with it.  Fear of failure and disappointment if I don’t fulfill what I set out to do.  Questions such as how can I travel next year if I’m looking at over $6,000 in out of pocket medical expenses for MS treatment not including  my prescription drug co-payment.  It also doesn’t include general well-woman care and the dental work I’m facing.  I know it can be done. I know its a matter of remapping my life and thinking outside the invisible force field I put up.

The question is, how?

Choices

November 10th, 2009 § 4

Last week I had my first appointment with a Neurologist at the Oregon Health & Science University since I arrived in Portland almost two months ago.  The first appointment with a new doctor (especially a specialist) is usually the most difficult for me.  Its almost like going on a blind date with someone you’ve never even spoke with over the phone or exchanged emails with.  Yes, he was cute…ha!  But in all seriousness, I think this appointment went pretty well though I think I left with more questions than I had coming in.  I am going to have my second brain and T-spine and first C-spine MRI tomorrow evening to see what’s been going on since January when I had my first MRIs.  I still don’t know how I feel about him yet, but I will meet with him again next week to go over my MRI results.

With MS, it seems like our only choice is a choice of several drugs to take to hopefully slow down the disease progression.  Pharmaceuticals is one of my worst fears.  I don’t even take over the counter medications. I don’t remember the last time I had an aspirin. I usually only take them when I really have to like when I had to take Prednisone last spring for a drug eruption.  It was a pharmaceutical to counteract horrible side effects from another pharmaceutical ironically.

I do my drug research, but it always leave me with an icky taste in my mouth.  Everyone else I know with MS are quick to jump on the drugs and I feel like I’m the only one who pulls away in fear.  I know its a choice, but its one of the most difficult choices I’ve ever had to make.

I am here! (The Financial Cost of Multiple Sclerosis)

October 29th, 2009 § 2

I know its been a while since I last posted, so I’m going to give you a short update.

The last time I wrote, Steve had fallen and broken a rib.  As you can imagine, the first several days was the worst but he slowly started to get better.  He is pretty much at 90% now.  He still has some aches and pains, but he is able to be active, lift and workout.  This worst is definitely over!

A couple of weeks ago, he struggled with one of the nasty flu bugs that’s going around these days.  Thankfully, he was able to shake it off pretty quickly.  I am fine and lucky that I never caught what he did. (knock on wood!)

Multiple $clerosis

Despite some setbacks over the past few weeks, I do have some good news:  I was approved for the Oregon Medical Insurance Pool.  Its a state run health insurance program that helps people who normally cant get insurance due to medical conditions.  Its not free or even low-cost by any means, but at least its available to me and so many other people who need it.  Multiple Sclerosis is a very expensive disease to have and the cost can be in the high tens of thousands of dollars a year.

The disease modifying drugs (or DMDs) alone can cost up to $30,000 year.  MRIs can be up to $5,000, and some doctors request them annually.  Then there are the doctor’s visits which can be quite frequent.  Some people may need to be hospitalized at one point or another. Many people are in physical therapy which I may need to start soon myself; and the right type of care isn’t cheap.  Then there is the need for medications to treat related symptoms.  Equipment and tools to make life a little easier or even possible such as canes, walkers, ankle-foot braces, wheelchairs, wheelchair lifts, cooling devices, hand controls for cars, home modifications including the need to move to a single story home or move to a more centralized location (and the list goes on) adds more financial strain to a person with MS and their families.  Though many people with MS are able to keep working, many of us are on temporary or permanent disability which means less money in our pockets.  And just because a person has MS, doesn’t mean they are not struggling with other unrelated health issues.

The average age of onset for MS is between the ages of 20 and 40, so many of us will have a long time to deal with these financial pressures.

« Older Entries