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Wednesday, June 30, 2010

Stop Poking Me!


I have totally and completely underestimated the impact wearing an aircast would have on me.

For those of you who do not follow me on Twitter (@selenamki) or are not friends with me on Facebook (www.facebook.com/selenakinouye) you probably don't know that I twisted the ever-loving sh*%! out of my right ankle about a week and a half ago. I went to the foot and ankle doctor and he put me in a walking aircast, a.k.a. the boot. Nothing is broken (yeah!) but my ankle was so painful it needed to be immobilized for two weeks.

Now at first, I was happy that I got to be in an aircast and could be weight bearing because I totally suck at walking with crutches. In fact, when I have had to be non-weight bearing in the past, I've resorted to crawling to get up stairs or go to the bathroom. And nothing reduces me to tears faster than having to crawl...

(Would this be a good time to mention that my ankles are the most problematic part of my body from a bio-mechanical and orthopedic standpoint and that I have injured them both before?)

This time it seems that my body does not like having an aircast touching my right foot 24/7. All that extra sensory input is making my body unhappy.
After the first 24 hours, a few of my toes on my right foot went numb from the pressure the boot was putting on them. Then those toes started to burn like they were on fire. Then my whole right foot started itching like crazy.

Not satisfied with driving just my right foot nuts, a few days later the aircast triggered a body-wide flare-up of my fibromyalgia. Overall my pain level increased. Symptoms of the flare-up include digestive upset, dizziness, more severe numbness and tingling in my hands and a lot more fatigue.

In the past few days, I've noticed that my brain has switched to grumpy, short-tempered and completed scattered.

Wearing an aircast has reduced me to feeling like I'm a little kid and someone is poking me. I say Stop poking me! and they keep poking me. The more they poke, the most upset I get, the more I say Quit it! The more I say Quit it!, the more they keep on poking me. It's a vicious cycle that just keeps escalating.

I wish I could do the neurological equivalent of hauling off and slapping my nervous system upside my head in an attempt to get it to stop overreacting even more than it usually does.

Now I am dreading what the doctor might say this coming Friday when I have a follow-up appointment. If he says I have to spend more time in this aircast, I just might get really pissy with him. I want this darn thing off my foot and I'm starting not to care if my ankle is better or not.

I'm going to need to take a chill pill if I have to keep wearing this aircast.
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Monday, June 28, 2010

Chronic Illness: It Sucks ... And I Deal With It


What advice would I give to someone new to living with chronic illness?

There are so many things I do to cope with my own chronic illnesses, I could probably write a self help book (or several.) But as I contemplate this question, I recognize that what works for me may not work for someone else. Plus, giving advice ignores the fact that today is the result of my numerous experiments, trying out many different strategies to get to the ones that work for me.

Which got me thinking that maybe the best thing to share with someone new to chronic illness might not advice, but my approach.

So here is my guiding philosophy--> Chronic Illness: It Sucks ... and I Deal With It.

It Sucks

A lot of people comment about how positive I am in dealing with my multiple chronic illnesses and ask me how I do it. Here is my secret: I feel all my feelings--the easy ones, the hard ones, the pleasant ones and the crappy ones. I have found that the only way I can tap into living my best life with chronic illness is to be in touch with all my feelings.

I say embrace the suck and all the other feelings that come your way. Don't fight them and don't stuff them. The surprising part is that once felt, feelings don't last very long. Feeling your feelings lets them pass through and dissipate, so they don't control you or make your life miserable.

This is a lesson I learned the hard way.

When I was diagnosed with cancer at age 22, everyone around me started talking to me having a positive attitude. It was like having a positive attitude was the only thing that was going to cure my cancer. So I pushed all my other emotions down and didn't deal with them in the moment. But that didn't mean they went away. In fact, a few years later, I started having problems with depression. I learned that I missed out on dealing with some aspects of my cancer experience because I avoided my feelings.

Feeling your feelings helps you get to the next the next step ... acceptance.

... I Deal With It

Chronic illness sucks, but what I am going to do about it?
I can't wish it away, I can't make it go away and I certainly don't want my life to suck. So after I took some time to feel my feelings and process them, I asked myself what I wanted my life to look like, even if chronic illness was going to be a part of it.

This is how my quest to live my best life despite chronic illness was born.

Yeah, it wasn't a path I chose, but this isn't the first time a monkey wrench had been thrown into my plans. I've learned to embrace this new path and start searching for new things I could do and new directions I wanted to go. I've tapped into the girl who likes a challenge, enjoys taking risks and rises to the occasion. I found a way despite the suck to get motivated and get moving towards the life I want.

So if you are new to chronic illness, I'm sorry. It really does suck, but I am sure you can find a way to deal with it too. Let me know if you need my help ... leave me a comment or send me an email.

P.S. I've discovered that when I am having problems dealing with it, it usually means I need to spend some time going back to feeling the suck. It's a process: two steps forward and one step back. I just keep feeling the suck ... and dealing with it.

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Friday, June 25, 2010

Guest Post: Acupuncture Served As A Fatigue And Pain Treatment














Acupuncture Served As A Fatigue And Pain Treatment

By Rachelle Holmes of Chicago Breast Augmentation and Chicago Liposuction Center, MetropolitanMDs

Acupuncture is one of the oldest forms of health care and treatments on the planet, but it still serves its purposes even today. Now, while inserting dozens of needles into your body doesn't seem like the most fun way to treat ailments, acupuncture is a tried and true therapeutic practice that has helped people deal with pain for centuries.

By inserting needles into various pressure points around the body, physical pain and stress can be relieved and even treated using acupuncture. For most, it's funny to think that sticking needles into the pain areas and pressure points of the body would be the answer, but when it comes to people who suffer from fibromyalgia and chronic fatigue syndrome, it might just be that.

New studies have shown that that acupuncture in certain areas of the body releases adenosine, which is a natural pain killer that is usually released after an injury. This allows people who are suffering from constant fibromyalgia to gain some much-needed relief.

By releasing adenosine, pain signals can be blocked from ever reaching the brain thus helping sufferers deal with their pain problems. This brings up a lot of questions about how much acupuncture has to do with adenosine release and if this is the reason that so many benefit from it. Yet, whatever the reason, studies have shown acupuncture to be great at treating the condition and helping the people who suffer from it.

From the fatigue angle, the study also went on to show that adenosine released from acupuncture has a lot to do with the regulation of the sleep cycle. By being able to regulate sleep correctly, chronic fatigue syndrome may be able to be properly treated and even fixed.

Acupuncture paired with the correct medicine can help both constant pain and fatigue, as new studies have gone on to show. This is good news for sufferers of both ailments, and goes to show that this ancient art of health may still have some new tricks to share.

This article was fully researched and further reviewed by the doctors at MetropolitanMD. You may contact the author for more information by clicking here.

DISCLAIMER: The opinions expressed in this article are those representative of MetropolitanMD, and any facts presented are fully researched with proper citation.



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Thursday, June 24, 2010

My Dream Job



I'm up, dressed and ready to get my day going. I've assessed that today is a good day, a good day to call in to work and see what opportunities they have for me.

"Hello, Selena," the voice on the other end of the phone cheerfully greets me. "Are you able to work today?"

"Why yes, yes I am," I reply.

"How many hours of work are you looking for today?" my liaison asks.

I pause for a moment just to reassess how I feel today. My pain level right now is about a 6, my fatigue level is about the same. I got a good night's sleep, which definitely helps. No errands or doctor's appointments today, so my schedule is free. Yeah, I can do this...

"I'd like 90 minutes of work today," I respond.

"Great. Here are the opportunities available to you today, based of course on your skills assessment:

  • You can staff the Wacky Farms turkey hotline. Log into the company website and type 'Wacky Farms' into the job ID search screen. You will be directed to the call handling information tree. Simply call into the system and enter your ID whenever you are ready to take a call and a caller will be routed to you. The system will track your call time and advise you when you have reached 90 minutes.
  • You can conduct Internet research for a client on moringa oleifera, also called The Miracle Tree. The client is looking for a list of links to scientific articles that reference moringa oleifera. Simply log into the company website, type 'Internet research + Miracle Tree' into the job ID search screen and use the company browser to conduct your research. Hit pause whenever you need to take a break. The system will track your research time and advise you when you have reached 90 minutes. This is step one in a multiple tiered project that includes reading the articles and write a synopsis of the information, which you are eligible to take as an assignment for the next two weeks.
  • Or you can locate the best deals on the Internet for buying several different items, including an iPod Touch, a Sony 52" flat panel TV and a used Slacker Radio G2 40 station portable music player. Part of the assignment is to look for valid discount codes that can be used towards the purchase. Simply log into the company website, type 'best deals' into the job ID search screen and use the company browser to conduct your research. Hit pause whenever you need to take a break. The system will track your time and advise you when you have reached 90 minutes.


"Hmm, let me see, I think I'd like to work the Wacky Farms turkey hotline today."

"Great, Selena, let's get you started...."

Yes, this is a dream. But today I am going to ask the question,
"Why can't this be a real job opportunity for people with disabilities?"

Today I am writing my blog post in support of Empowering People with Disabilities Day, a Bloggers Unite event. As the organizers state:

One in every five Americans is affected by a disability. This means that approximately 54 million people in the U.S. alone are working everyday to gain greater independence and create new possibilities for themselves.

Within the United States, the Americans with Disabilities Act (ADA) has done much to eliminate the barriers and discrimination people with disabilities have faced for so long. Yet, about three quarters of adults with disabilities are unemployed--even though most would prefer to be working. And, internet access for people with disabilities is about half of what it is for those without disabilities.

Clearly there is still a lot of work to be done if we want people with disabilities to be truly empowered!


I almost don't want to admit it, but I am one of those persons with disabilities that is unemployed. I receive Social Security Disability benefits, but my check is no where near the amount of money I used to make when I was employed. My chronic pain and chronic fatigue really limit how much I can do in a day and make me more home bound that I care to admit.

But wouldn't it be wonderful if there was an employer like the one in my fiction above that could match me to jobs that fit my skills and time availability? An employer that understood my need for flexibility in both work schedule and in my approach to getting a task done? An employer that encouraged me to work from home when I could and didn't penalize me when my health did not allow me to accept an assignment? An employer who recognized that I still had things to contribute to society even though I am disabled?

It really is a BIG dream, but today on Empowering People with Disabilities Day, I am going to allow myself to dream big because I know there are many more people out there who wish society could accommodate us more, beyond handicapped parking spaces and some limited protections in the workplace. I want to be a part of society, even if my participation takes place mostly inside my home. I want to be a valued member of society, even if I can only contribute a few hours a week to work pursuits. I want to be all that I can be, even if that looks much smaller than what most people can accomplish.

Please help empower people with disabilities and allow us to make our dreams a reality too.



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Wednesday, June 23, 2010

Ode to My Cereal Bowl

A spoon containing breakfast cereal flakes, pa...Image via Wikipedia


I don't eat cereal for breakfast.

"What?" you ask.

That's right, I don't eat cereal for breakfast.

I don't complain about all the dietary restrictions having type 2 diabetes places on me, probably because I have been dealing with this for 11 years now and have become quite accustomed to all the things I have to do to keep my blood sugar under control. Things like eating meals that balanced carbohydrates (carbs), protein and fat, watching my portion sizes and limiting my carb intake to about 45 grams per meal. I accept that breakfast is the hardest meal of the day to eat, simply because breaking the fast often means inducing high blood sugar, even when I reduced carbs to only 15 grams at that meal.

If you are not diabetic, you probably have never read the nutritional information on the side of the cereal box or the carton of milk. So you might be surprised that milk has carbs too, in the form of sugar lactose. Soy milk is really no alternative; it has more carbs than cow's or goat's milk and even less protein and fat. Between the cereal and the milk, I'm was lucky to get one half of the suggested serving of cereal (typically about 1/2 cup) with about 1/2 cup of milk for a total of about 20 grams of carbs. That's not much of a breakfast.

So you see, a regular bowl of cereal just has too many carbs to be considered a breakfast food for me, even if I throw in a handful of nuts to try and balance the carbs with some extra fat and protein.

Up until a couple of month ago, the only breakfast cereal-like food I could eat was oatmeal. I'm not sure why oatmeal was O.K. A small bowl of plain oatmeal made with water (about 15 grams of carbs), with a soft boiled egg on the side, was the closest thing to cereal I could eat on a regular basis.

Then my endocrinologist switched me from Byetta to Victoza, a new injectable medication for people with type 2 diabetes. Victoza is a once-daily dose of the new-generation GLP-1 drugs that stimulate pancreas cells to release insulin when blood sugar levels are high. Now, with Victoza, I can eat Kashi Go Lean cereal (1 cup = 1 gram fat, 30 grams carbs and 13 grams protein) with milk (1 cup = 2.5 grams fat, 13 grams carbs and 8 grams protein) with a handful of walnuts (7 halves = 9 grams fat and 2 grams protein) for dinner without my blood sugar skyrocketing and making me regret each bite for several hours afterward.

With Victoza, my fasting blood sugars are closer to the normal, non-diabetic range (70 to 110) than they have been since I have been diabetic. Yesterday my fasting blood glucose was 113! They used to be between 130 and 140 on a good day. My after meal blood sugars are equally impressive. I've also noticed that my stomach seems flatter and my appetite smaller too.

I'm enjoying my victory with Victoza!

I can't believe that I can eat cereal again. I'm tickled that I quite possibly can bring my cereal bowls out of retirement. I'm working up the courage to actually try eating cereal for breakfast to see if it is doable. All of this makes me grateful that diabetes is one of my many chronic illnesses that I can enjoy a modicum of control over. Which is perhaps why I don't often blog or complain about my type 2 diabetes.

Yes, I almost feel like a normally eating person again.



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Tuesday, June 22, 2010

Getting My Priorities Straight

Sunflower Seed KaleidoscopeImage by Tobyotter via Flickr


I find that I do my best thinking when I am out in my garden. There is something about the simple tasks I engage in there, like pulling weeds, planting seeds and watering, that allow my mind to both relax and focus on the things that are most important to me.

Yesterday while I was watering my plants my thoughts meandered towards my priorities. That started me on composing a list and lead me to devising my own hierarchy for them. This is the end result:

  1. Myself before others
  2. People before things
  3. Being before doing
  4. Love and happiness before sorrow and hate
  5. Mindfulness before multitasking
  6. Mistakes and messes before perfection
  7. Feelings before thoughts
  8. Gratitude before desire
  9. Real world before distractions
  10. Relaxation before activity
It amazes me how easily this whole list just came to me. I won't spoil it by going into a detailed explanation of each item. Suffice it to say that this has been a work-in-progress and that this list reflects the changes living with chronic illness has brought to my life.

My final thought: I wonder what this list will look like in 5 years or 10 years from now.

Do I have my priorities straight? What would you add or subtract from my list? Share your thoughts in my comment box...
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Monday, June 21, 2010

A Reflection on Father's Day

Our Father, who are in nature.Image by Brian Indrelunas via Flickr


We don't really celebrate Father's Day in our house.

Sure, I make a big deal about Mother's Day because I want to be a mom. But my husband Robert seems content with the way things are. That is, I have never heard him express any regrets about not being a father. That's probably because, as he said to me before we got married, "I figured if the woman I married wanted to have kids, we would have kids. If she didn't, we wouldn't."

I call Robert
Dad when we do things with the dogs like, "Dad, the boys need to go outside for a potty break." and "Dad, say goodbye to the boys before you go." He seems to get a kick out of it. I've not-so-secretly been priming him to be a parent with an assortment of pets and I think that if the universe allows it to happen, he would make a great Dad. But he won't be disappointed if it doesn't happen.

My own Dad died six years ago. I want to say that I miss him, which I do, but not enough to wish he was still alive, living with Alzheimer's disease. Today I realize that the eight years I helped take care of him really took a toll on me too. I still have a hard time remembering him before Alzheimer's slowly started taking him away. It's like his illness robbed me of some of my memories too. I hoped that with time some of those memories would return, but I feel like that really hasn't happened yet.

I also just realized that I never went to see the plaque on my Dad's grave. I suddenly feel the need to find the time to go visit him there.

Then, of all things, I saw someone tweet this joke on Twitter Sunday:
@Jesus - Oh my God, I totally forgot it's Father's Day!
It's interesting to note that original celebrations of Father's Day were actually associated with St. Joseph's Day, March 19, a Catholic saint feast day honoring the earthly father of Jesus. Which got me thinking about my lack of attention to my religious life. I am one of those lax Catholics the active ones pray for each Sunday and I am O.K. with it.

I recently dug up the family trees I possess on my family and found that a lot of my relatives were actually Lutheran, not Catholic. At one point in time, I considered converting to Lutheranism, simply because I am disillusioned with the Catholic Church. I simply don't want my religion to make me a hypocrite: believe in one thing but feel compelled to do another.

Although, to be honest, I really don't need a religion to have a relationship with God.

So I guess I do have an odd assortment of fathers to celebrate and be thankful for on Father's Day. Too bad I didn't realize that a few hours ago. Happy Belated Father's Day Robert, Dad and God. Robert, me and the boys will do something special for you this week to make up for our lack of extra special attention for you this past Sunday. Dad, you are always in my heart. God, perhaps I need to get reacquainted.

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Friday, June 18, 2010

Good Reads for the Weekend

Logo of Look and ReadImage via Wikipedia


I have been a very busy blogger this week. You can find me featured in three different places around the blogosphere, which is a personal record! Two of my posts you have already read if you visit here frequently, but that's no excuse not to visit both the ChronicBabe and Grand Rounds blog carnivals because there are plenty of other great posts featured. The third is my debut post at Colloquy Moms, where I am a new weekly contributing blogger.

First up is the ChronicBabe blog carnival where the theme this time was PASSION. I submitted my post Have Fun Every Day, but there are others there that sound intriguing like The Passion Thief, Love, Sex, Magic ... and Chronic Pain and Find Your Passion, Find You LIFE! So click here and be transported to the ChronicBabe website where you can read these and eight more great posts about passion, all written by ChronicBabes just like me.

Next is Grand Rounds, the medical blog carnival, hosted this time by my friend Steve at Adventures of a Funky Heart! Steve featured my post Health Care Reform: Will It Limit My FSA?, which is an issue that is ongoing and deserves your attention. There are also posts about dancing with your doctor, nurturing the practitioners of Woo and the lowdown on MRI love. Click here to read all the featured posts and get in touch with the pulse of medicine on the Internet today.

Finally, here is my first post from my new gig as a weekly contributing blogger over at Colloquy Moms. I love that I get to expand my writing horizons and talk about 'normal' stuff when I blog there. This week I wrote about how-to Make the Perfect Steak for Father’s Day, based in part on my own adventures in grilling in my back yard where I wear the 'Kiss the Cook' apron while sitting in front of the barbecue.

So include these blog posts into your weekend plans and be sure to spread some comment love along the way.



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Thursday, June 17, 2010

Linky Love: Does Fibromyalgia Contribute to Clumsiness?

trip and fall down carefullyImage by jimmiehomeschoolmom via Flickr


Tonight (Wednesday) I twisted my ankle and fell stepping down from the bonus room behind the garage to the ground. Yes, this is the second time. The last time I fell doing this I broke my foot. This time, well I'm not sure what I've done just yet. What I do know is that this is getting ridiculous.

So in between feeling really lousy with pain and waiting for the inevitable fibro-flare to kick in, I seem to have uncontrollable giggles when I picture in my mind what I must have looked like falling. Robert was there and didn't actually see me fall, just looked over and saw me on the ground ... again. Then he just stood there looking at me while I cursed and brushed myself off.

Oh, to experience the sheer absurdity of all of this. Maybe I hit my head this time. Or maybe it's Schadenfreude kicking in, big time. O.K., this has got to stop. I'm probably not going to be laughing about this tomorrow (Thursday) when I wake up in some much more pain.

I thought I'd do some research to find out if having fibromyalgia increases your chances of tripping, wobbling, slipping, twisting, falling and bumping into things. Here is what I found out:
  1. Adrienne over at the Fibromyalgia and CFS blog at About.com says yes. Apparently recent research presented at the American Pain Society's 29th Annual Scientific Meeting showed just that. The conclusion was that people with fibromyalgia need to do balance exercises to prevent falls. She also took a poll at her site and 82% of readers indicated that "clumsiness" is an issue for them.
  2. WebMD cited the same research in their article People With Fibromyalgia More Prone to Falls.
  3. Brain Werner, MPT provides a lot of information about balance problems in people with fibromyalgia in his article The FM Balancing Act at the National Fibromyalgia Association website. Apparently, more people with fibromyalgia go to a physical therapist for balance training than treatment of their fibromyalgia symptoms. Who knew?
  4. Over at the ProHealth website, you'll find a reprint of an article by exercise physiologist Dr. Sharon Clark about exercise and fibromyalgia from the Oregon Health & Science University’s Fibromyalgia Information Foundation, the folks that did the balance research Adrienne and WebMD quoted above. She gives several tips in this article, but follow the link to the www.myalgia.com website (best viewed in Internet Explorer) for even more information. I have my eye on the DVDs, especially the Strength and Balance one, since apparently this truly is a big issue for me.
  5. But then I found this scientific abstract over at PubMed.gov: Tilt vibratory exercise improves the dynamic balance in fibromyalgia: A randomized controlled trial. Before, when I was healthy, I wanted to buy a home elliptical exercise machine. Now, based on the findings of this study, I so want to buy a home whole body vibration exercise machine. It looks like the lazy person's ultimate exercise machine, but for me, anything that can help with my balance and fitness that doesn't flare my fibromyalgia would be a plus. I wonder if I can get a referral from my doctor to a physical therapy studio that offers this kind of treatment so I can try it out first...
So that concludes this trip around the Internet to answer the question Does fibromyalgia contribute to clumsiness? Hope you have learned as much as I have about this topic. If I buy the Balance and Strength DVD or try out the whole body vibration machine, I will write a review so you all can be the first ones to know.

Trips, slips, wobbles and falls? Does fibromyalgia make you more clumsy? Let me know when you leave me a comment.
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Tuesday, June 15, 2010

Really Quite the Juggler

Circus Amok Jugglers by David Shankbone, New Y...Image via Wikipedia


I occurred to me the other day that I am really quite the juggler when it comes to managing all my chronic illnesses. In fact, I often wonder if I should revise my blog and limit the number of conditions that I choose as the subjects of my blog posts. Then I got an awful nice comment from Katie over at Dear Thyroid suggesting that I should become one of their guest bloggers since I have many conditions in common with their readership (minus the thyroid ones) and I seem to be doing such a good job managing my own multiple illnesses.

Truth is, what you see today in this post is but a snapshot from the travel album that is my life. Yes, welcome to mile marker 22, as in 22 year since I began living life with chronic illness. I've been learning to juggle on and off for the past 22 years, so if I appear to be very good at it, that's only because I've been practicing for such a long time. So compare yourself to me with caution, since I clearly hold an advance degree in this subject matter. At least I hope so, considering how long I have been studying it!

But for those of you new to life with chronic illness, take heart. If I can figure this whole coping with chronic illness mess out, so can you. Keep in mind that this is a process, which means for the most part you work this out as you go along. There really isn't a set time frame or path, per se--it's more like a correspondence course you take at home at your own pace. I find it's a lot of trial and error on your part and smaller parts of learning from others, getting educated through books and trusted websites and receiving advice from your medical providers.

Rest assured, we all are unique and different. So *fingers-crossed* I hope you will not have to deal with as many illnesses as me. I'm sort of special case it seems, as illness is a big theme in my life. Plus all my illnesses didn't happen at once, they came on in waves or stages. That gave me time to adjust to each one, or a couple at most at a time. That lent itself to learning to apply the skills I acquired coping with one illness to the next.

I guess that makes me some kind of "super coper."

Or not.

So in a world of niche patient blogs, I hope what makes my blog unique and special is that I write not so much about my sideshow collection of illnesses but how I learn to juggle them all. In which case, I'm certainly running my own little Circus Amok over here. Perhaps your fascination with me is part amazement that I can juggling so many balls at once and wonder if life throws me yet another ball, will it result in a spectacular dropping of all my balls.

Guess you'll have to stay tuned to see...

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Monday, June 14, 2010

Infertility: My Empty Nest

Empty Nest SyndromeImage by cindy47452 via Flickr


I needed to write a bio for my new gig at Colloquy Moms and I admit that initially, the whole task seemed daunting. Yes, they have a pretty loose and open definition of what a mom is, but what exactly was I going to say about my version of motherhood? So I decided it was time for a refresher course on family building options, time to review the materials at Resolve once again.

Resolve is the National Infertility Association. Robert and I joined back in 2004 and even attended an adoption conference sponsored by them in 2005. Then we decided that, due to my emerging chronic illnesses and disability, we needed to put our family building options on hold, and let our membership lapse due to financial constraints created when I could not work anymore.

I went to the site yesterday looking for more information about the family building choice of not having children. Yes, choosing to have an empty nest is a family building option.

To be honest, I did not find a lot there on this choice, but what I did find inspired me to write the following:

With our family building plans on hold for now, we are trying out the option of life without children. But just because we don't have children of our own doesn't mean kids aren't an important part of our lives. We are part of the village that is raising the children of our friends and the kids in our neighborhood. We also donate to causes that support children's health and education, of which PBS is one of our favorites. I satisfy my mothering urges by nurturing a backyard container vegetable garden, rescuing and fostering stray kittens, being a devoted and doting pet parent and enjoying arts and crafts like loom knitting.

Truthfully, I have been trying this option on for a while now. Another point made at the Resolve site was that we could always change our minds and pursue other family building options if this one wasn't a good fit. That is good advice. But I can't help but feel a bit hopeless in the face of my chronic illnesses. They appear to be stubbornly stuck in a status quo, never giving me a break and letting get just a bit better. I'm not sure I can be a good enough mother in my current condition and it pains me to admit this.

Robert and I are willing to be so flexible in our family building plans. We actually agreed that we should look into adopting a child from the foster care system and would even consider bringing a pair of same sex siblings into our home. With our multicultural marriage, we don't have our hearts set on a particular race or color either. And since I am diabetic, we would be willing to take on a child that has some medical issues because we know that we could handle them.

So why can't God see fit to let us win some kind of lottery so we could hire the right amount of help to support us raising a family?

Ugh.

There are so many feelings that have sprung up right now that I feel the need to stop and compose myself. Clearly this is one of the BIG unresolved issues in my life. But don't worry, I'll come here again. In the meantime, I'll figure out a way to keep being O.K. with all of this, even though it is not my first choice.

To be continued...


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Sunday, June 13, 2010

Good Love: Celebrating #LovingDay 2010

Mildred and Richard LovingImage via Wikipedia

I learned from Colloquy Moms founder Kathleen Robertson that yesterday was Loving Day. You see, like me, Kathleen is in an interracial marriage. Turns out, on June 12, 1967, the Supreme Court of the United States legalized interracial marriage.

Growing up here in California where couples of all races, sexes and ages freely come together, it's hard to imagine that there was a time not so long ago when it was actually illegal to get married to someone of a different ethnic background.

The celebration actually gets it name from Mr. Richard and Mrs. Mildred Loving (see the picture at the top of this post), the couple at the center of a lawsuit against the state of Virginia. You can read the whole story by clicking here. It's a happy coincidence that their last name was Loving! They were pioneers of their time, fighting for the rights for any two people in love, regardless of their race, color or creed, to participate in the ultimate expression of love: marriage.

There is a huge celebration planned today in New York City which you can learn more about a the LovingDay.org website. The volunteer Loving Day organization seeks to connect the multicultural community and sponsors annual Loving Day events. I think it's a great idea for a national holiday and a chance to celebrate not just interracial marriage, but the multicultural fabric that makes up American society today.

So how did I meet Kathleen?

She offered me an opportunity to spreading my wings just a tiny bit. Believe it or not, I am going to be contributing a weekly post to ColloquyMoms.com. Who knew I would become a mommy blogger! Fortunately for me, this blog has a very open and inclusive definition of the word mother ... one that includes me:

Colloquy Moms
began as a way to connect moms from many different backgrounds to the readers that relate to them. Our articles cater to natural moms, spiritual moms, moms to be, future moms, adoptive moms, God moms, grandmoms, stepmoms and every other mom in between! No matter who you are or where you come from, you can find a place around here to fit in! We also get a little more interactive over in our cozy discussion forums, which you’re more than welcome to join!My posts will appear on Thursdays. This new opportunity will help me expand what I write about, so look for articles from me on cooking, gardening, pets, health and beauty and some good rants and raves about the more absurd aspects of modern life. I can't tell you how excited I am about this new opportunity! Please join me at Colloquy Moms.

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Friday, June 11, 2010

Have Fun Every Day

SwimmingImage via Wikipedia
Nothing sucks the life out of you like finding out you are sick. It feels an awful lot like jumping into a pool filled with cold water. As you enter, you feel shock and numbness. When you surface, it's really hard to take that first breath. All you want to do is get out of the water and get back on the deck of the pool, but you can't get there without swimming.

After those first few moments of panic back in 2004 when I discovered that my body wasn't working quite right anymore, I suddenly realized my new job was to find medical professionals that could help fix me. Everything else doesn't matter. My life was officially on hold while I dealt with this health problem.

Several months into my latest search for a cure, I got even more bad news. I had the misfortune to be stricken with an invisible, chronic illness of questionable legitimacy in the medical community: fibromyalgia. There were now infuriating questions about whether I was ill or malingering. On top of that, the medical professionals who did believe me couldn't offer me any course of treatment that will restore me back to my previous healthy state.

NOW what?

What if I have to live the rest of my life with disabling, invisible chronic illness?

A year and a half into this whole ordeal, after I finished kicking and screaming (in my head of course), I started to consider that this might actually be my reality. I can't just keep putting my whole life on hold, I thought. But then again, what kind of life can I have if I am living with unrelenting chronic pain and chronic fatigue?

It seemed like too big of a question to answer all at once. So instead, I created a list of six things to try and do each day to help me make the transition from patient to person living with chronic illness. Number one on my list: have fun every day.

At first, I had no idea what to do with myself. But I knew ordinary things like watching TV or reading a book weren't what I had in mind. Old hobbies seemed impractical or impossible with the limitations my chronic illnesses imposed. I literally had to start from square one and figure out 1) what I could do and 2) what would be fun.

I gave myself permission to be totally hedonistic. I sought out the things that made me feel good, things that made me feel alive. Through trial and error and a lot of experimentation, I discovered that I could blog, write, loom knit, crochet, play games on the Wii, learn new things from the programs on PBS, container garden, bird watch and care for a dog.

Along the way, I started dreaming again. I found myself making mental notes and jotting down other things I wanted to do. Spurred on by a friend, I gave some thought to what I might put on my new business card now that I was 'retired' and free to pursue new options. I started thinking about creating a new, not so big life with a few, important things at the center of it that could nourish and inspire me.

Oliver Goldsmith said:
Life is a journey that must be traveled no matter how bad the roads and accommodations.
The funny thing is, while I've been learning to make the best of what I have at hand, I discovered a new passion for living life. I'm more determined than ever to become a phoenix rising from the ashes ... or Madonna on her Reinvention Tour. The more I have fun and enjoy my life today, the more I can let go of old dreams and aspirations and begin to recreate myself, living my best life despite chronic illness.

I'm learning to swim, and the water really isn't that cold after all.
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Thursday, June 10, 2010

The Benefits of Being a Sick Chick

Benefit ConcertImage by Corey Tegeler via Flickr


Have I said this lately? Being a sick chick for 22 years of my life has nurtured my personal growth and maturity. Illness has shaped me psychologically and spiritually into the person I am today. While I'm not always thrilled about the places I visit along the way, I've somehow found a peace and confidence within myself that helps me feel O.K. despite ongoing chronic illness.

Sometimes I wonder what I would have been like if I hadn't gotten cancer at age 22. I'm thinking that in a parallel universe there is a Selena that has never had major health problems who might have the answer. I almost want to meet her ... and I wonder if I ever get to be her. (Is she the selfish and self-centered one my mother kept talking about?)

Building on my post yesterday about how I learned to have a mature relationship with my mother, I thought I'd list more ways I have matured and grown because illness was a part of my life:
  • I accept that life is not "all or nothing" or "black and white." I've learned to live comfortably amongst the shades of gray. (Think about it: gray really does go with everything.)
  • I can deal with reality, even if it does bite.
  • If I ask the question "Why?" I need to accept that the answer might just be "Why not?"
  • The only constant in life is change. If I haven't change my opinion, perspective or hairstyle in a while, I better check my pulse because I might be dead!
  • I can get through life's rough patches. I may have to go over, under, around, through or somewhere else all together, but I will figure out how to move on.
  • I recognize that I have no control over a lot of things in life. I guess that should freak me out, but frankly prefer not being in charge all the time.
  • When faced with a situation where I either need to bend or break, I choose to bend.
  • I realize that it is easier to accept other people for who they are than to trying to change them.
  • If I am putting up with someone else's crap, it's because I want to, not because I have to.
  • It's just easier to make the effort to get along with other people, even the ones I don't care for or particularly like.
  • I don't always have to like the people I love.
  • Life is much more fun when you share it with other people, especially the furry ones who don't talk back.
  • I make mistakes and I am not perfect. I can admit when I am wrong and acknowledge that there is always room for improvement.
  • Now that I have broken this lifetime in and have gotten comfortable with it, I refuse to trade it in for anything else, no matter what else is in store for me.
  • I am stubbornly holding onto this life that I have come to cherish until I absolutely, positively have to let go.
Most of all, no matter what, I know that I am a good person deserving of all the love and good things that come her way. So come on, universe, shower me with all the good stuff you've been holding onto for me. I'm ready, let's go!


What do you think? Are there benefits to being a sick chick? Can illness spur personal growth? Leave me a comment and let me know...
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Wednesday, June 9, 2010

Learning to Have a Mature Relationship with My Mother

All about my motherImage via Wikipedia

So if you have been reading along this week, so far I have told you about my siblings who choose not to talk to me and our mother who promoted discord and unstable relationships among the four of us growing up. I've talked about how, on my mother's side of the family, there is a multi-generational history of emotional cutoff. Then I admitted that, without the cooperation of my siblings, I am unable to stop this cycle from continuing.

So today I'm going to talk about how I grew up and learned to have a mature relationship with my mother BEFORE she died. That's right, I figured out a way to interact with her that didn't leave me depleted, angry or feeling like she had taken advantage of me. I actually was able to successfully interact with her AND feel good about it.

How did I do this?

It started in 1995 when I took a vacation from my family for a year and a half. I flat out told my mother that I needed to figure some things out for myself and didn't want to talk to her for a while. I didn't change my number or my address so my parents knew how to get a hold of me, but I also didn't encourage my mother to contact me "if there was an emergency" because she clearly didn't understand what the word emergency meant.

I spent that time getting to know myself and who I was. I looked at the mythology my family created about who I was and decided I wasn't buying into it any more. For example, my mother frequently said I was selfish and self-centered and, after careful consideration, I decided that wasn't an accurate description of myself. I went through every aspect of the mythical Selena, compared them to the real Selena and came to the conclusion that my family just didn't understand me.

Rather than be angry or upset, I decided to just try to accept this as fact. After all, up to that point, I had spent 30 years trying to demonstrate that they had it all wrong, trying to get them to see the real me. I gave up on seeking my family's validation and approval. I embraced the fact that I was an adult and could do whatever I wanted to do and it didn't matter what my family thought or how they judged me.

I also recognized that many of my family's judgments, criticisms and rejections were steeped in emotionality. So I decided that I was going to try and avoid getting caught up in the emotional tornado of bitterness, unhappiness, shame, hysteria and anxiety that swirled around my family. I worked on adopting a calm, cool and collected stance so my thinking and behavior could be rooted in a careful consideration of the facts.

Then came the big test.

December 1996 I got a Christmas card from one of my sisters saying "Dad really needs us now." So I went to go visit him when my mother was at work and immediately could tell he displayed cognitive deficits indicative of Alzheimer's disease. I decided my vacation was over and I needed to be involved with my parents once again. But instead of allowing myself to get sucked back into old patterns of behavior, I started setting limits with my mother.

In the past, my mother sought me out when she wanted me to do something for her.
So I started by reminding myself that this was HER husband and it was HER responsibility to care for him, even though this was my dad and my heart yearned to take care of him myself. This time, I gave her the information and referrals she needed so she could take care of HER husband HERSELF. I would support her and my dad, but I wasn't solving this situation for her.

I worked on not letting her hurt my feelings when she said something objectionable. I worked on being open-minded when she spoke, listening instead of formulating a comeback to her opinions. I worked on controlling my temper. I worked on being clear about my limits and what I was and wasn't willing to do. I worked on being compassionate, not critical of my mother. I worked on accepting that I couldn't change her thoughts, feelings or actions, only my own.

It's amazing how other people respond when you change.

It wasn't all that I wanted or hoped for, but we somehow were able to get along better. I made choices about what I was going to do and didn't succumb to pressure to do more. I acted thoughtfully, in the best interest of myself, my husband
and my parents (in that order.) I sidestepped the emotional tornado and didn't get caught up in the panic, fear, hostility or guilt. I could disagree with her and it just wasn't a big deal anymore. I focused on just being ME, without worrying about having to justify or defend myself.

When my mother was diagnosed with colon cancer a month before my wedding in 1998, I didn't postpone our plans. I did everything I could to be there for her during her illness and took care of my dad when she was gone. We never truly resolved our differences before she died, but I did go and say goodbye to her. I don't have any regrets. I am confident I did everything a good daughter would have done to help their dying mother, which in turn gives me peace of mind as I move forward with my life.


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Tuesday, June 8, 2010

History Repeating Itself

Branches broken off a tree in Wythenshawe Park...Image via Wikipedia


Yesterday when I wrote about emotional cutoff and my three siblings. What I didn't mention in that post was my family's history of emotional cutoff, which truly deserves this post of its own. It's quite amazing what I have pieced together on just my mother's side of the family alone. Since the participants are all deceased, it seems like the most appropriate side of my family tree to explore...

I should start with the comment that impressed upon me that getting along with my siblings should be important to me. The comment came from my beloved Grandma Ann. She offered it to teenage Selena as a piece of advise, a pearl of wisdom, with what I believe was the intention of helping me navigate the waters of adulthood. She said to me, "You should try and get along with your brother and sisters, because in the end, they are all you will be left with."

What motivated her to say this to me?

My grandma grew up with many siblings in Minnesota. I am not sure of the exact number and the genealogy that provides this information is currently hopelessly lost under a pile of papers. (Note to self: get help cleaning up the house.) The number aside, what I remember from my childhood is snippets about how there was a lot of conflict among those siblings that resulted in cutoffs. In fact, some of my grandma's siblings when so far as to make sure the siblings they no longer had contact with received copies of their wills after they died that stated they were being deliberately written out.

Then there was my Grandpa Herbert's side of the family, Grandma Ann's husband. I knew my Great Aunt Myrtle, my Grandpa's sister. What I didn't know until I was a young adult was that I had a great uncle too. His name was Edward and he died at age 50 in 1951. No one talked about him when I was growing up. My mother mentioned him once, saying that he was cutoff from his siblings and that his surviving wife and children moved to Northern California.

Most of all, perhaps my grandma could see the beginnings of the rifts between us grandkids before her death in 1981. It's no secret in our family that there were two camps: my mother's versus mine. My siblings frequently changed sides between the two, manipulated by my mother. My dad avoided the conflict by retreating to the backyard garden. I could tell my grandma was frustrated with her only child's parenting style and seemed almost helpless to do anything about it. What my mother was doing was tearing us siblings apart; what my grandma hoped was that we could find a way to stick together.

I have learned that overcoming multi-generational family patterns of behavior is impossible for me to do on my own.

It's funny how, as I put this in writing, I suddenly feel absolved of my perceived failure to overcome this. I really wanted to put my grandma's advice into action, but I know as an adult that the task was not one I could accomplish without the cooperation of my siblings. I still believe her advice is the truth. Our siblings are the last remnants of family we have after our parents and grandparents are gone. Our siblings move through our entire past, present and future in a way that no one else can or will. Which makes losing them along the way to something like emotional cutoff seem so fundamentally wrong.

While I understand the wisdom and the motivation behind my grandma's advice, it was never something I could achieve on my own. I recognize now that it's not a failure on my part if my siblings choose to avoid their unresolved family issues by cutting off contact with me. As long as I continue to work on my own issues and remain open to my siblings should they change their minds, I can take comfort that I have done all I can do to prevent history from going down the same path one more time.
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Monday, June 7, 2010

Dead to Me

World War I Brookwood American Cemetery and Me...Image via Wikipedia


It must be the time of year, smack dab between Mother's Day and Father's Day, that has me thinking about my family, the people I grew up with and the people who raised me.

Both my parents are dead. We buried our mother in 1999, after she died of metastatic colon cancer at the age of 61. Our dad passed away in 2004, a few days short of his 71st birthday. But truth be told, he left a long time before that due to Alzheimer's disease.

That leaves my three younger siblings, who are sort of like dandelion seeds blown away by the wind.

The truth is I should just let them go. Each, in their own time and in their own way, have come to the conclusion that they need to live their adult lives without any contact with their siblings. I struggle to understand their reasons, of which I can only make educated guesses, which ultimately leaves me with more questions than answers.

If I am really honest, I probably could have predicted this outcome based on my cancer experience. For example, when my three siblings were tested to see if they could be a bone marrow donor for me, one said that they would have to consider whether to give their bone marrow to me if they were a match. No one matched, eliminating this dilemma. Another sibling made fun of me when I started wearing a wig to cover my baldness. There were rumblings in the family that the reason I got cancer was because I was "burning the candle at both ends" and because I was partying in the dorms at college. Only one sibling came to visit me in the hospital on a regular basis, accompanying our dad; the other two were MIA.
Instead of bringing us together as a family, my cancer diagnosis tore us further apart.

I know what they said and what they did back then really had very little to do with me and everything to do with them. Sure, it hurt me. But I can excuse their behavior and overlook their comments because they were young and ill-prepared to handle their older sister's life threatening illness.

But as the years have passed, I've kept hoping that they would overcome the baggage of our collective past and make amends so we could move on together.

I know that people who cutoff from their parents, siblings and other family members due so because of their own unresolved emotional issues. Unfortunately, avoiding their family of origin doesn't make those issues go away. In fact, they are very likely to let those issues play out in their marriages, families and friendships, in essence creating situations where those scenarios play out again ... and again ... and again.

This only intensifies my sadness, as I am here waiting to resolve those issues with them when they are able to do so in a mature, honest and forthright manner.

The last time the four of us where in the same place was at our father's funeral. We were all there at the cemetery, watching as they interred our father into the wall of the mausoleum. I often wonder if this was the very last time we would all be together. In which case, the irony has not escaped me--a cemetery would be the perfect setting for our last rendezvous, especially since they have all decided that they are dead to me.


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Wednesday, June 2, 2010

PFAM Blog Carnival: Travel from the Chronic Illness Point of View

A drawing of a suitcase with the word "TR...Image via Wikipedia



Welcome to the Patients for a Moment (PFAM) blog carnival! This time the theme is travel from the chronic illness point of view. Our travel group consists of eleven bloggers, all persons living with chronic illness, who each have a unique and personal take on the subject. So stow your luggage under a seat or in an overhead compartment, return your folding tray and seat back to the upright position and fasten your seat belt as we take off for a virtual flight around the blogosphere.

Pack Your Bags

Being prepared and planning ahead are travel musts for persons with chronic illness. Rachel of Tales of my Thirties demonstrates the strategies she uses for herself, a type 2 diabetic, and her husband, a type 1 diabetic, with her video blogging entry: Vlog: Long time no see…

Diana at Somebody Heal Me is determined to help us get organized with her list of travel tips, including some very good ideas about traveling with medications. I recommend you print out her post and use it as a part of your personalized packing list. Read 14 Tips for Chronically Ill Travelers and don't forget to check out the links at the bottom of the post from even more information for travelers with disabilities specific to planes, trains and buses.

Kathy over at Fibrochondriac has a lot of good reasons to be traveling this summer, including a family reunion and the birth of a grandchild. But she admits she still struggles with making sure her medications get packed and her shampoo and conditioner bottles are labeled, which is why she is asking for reader suggestions in her post Might As Well Be A Travel Blog.

Planes, Trains and Automobiles

Gerri has been traveling too. At 50 is the new 40, she tells us she got to witnessed with birth of her grandson
on her last trip from Oregon to Arizona to visit her daughter. In her discussion of her solo travels by airplane, chronicled in Calgon Take Me Away!, she comes to the realization that she needs to start doing things differently at the airport and the hotel to accommodate her arthritis and fibromyalgia.

America has a love affair with the car, and Rosemary at Seeking Equilibrium likes driving in the fast lane. Or at least she used to before her life with fibromyalgia. In this hilarious post Let's Go For a Sunday Drive, she talks about all the ways her chronic illness has transformed her into one of those little old lady drivers she used to curse at under her breath as she sped by them.

Kathy at Making Noises tries to balance her need for communing with nature and the joy it brings with the inevitable post-trip symptom flare-up she knows is coming. She shares with us some absolutely beautiful pictures of her excursions with her husband to the foothills and mountains of the Canadian Rockies in her post Day Tripping.

It's Not All Fun in the Sun

Kairol over at Everything Changes reminds us that not all travel entails arriving at a tropical resort or sightseeing in the big city. Her frequently travels take her to New York for doctors' appointments. Luckily, one of her readers tipped her off to a good strategy to utilize and she wrote Traveling With Cancer or Chronic Illness? to pass this good advice along to us.

Best Kept Travel Secrets

Did you know that a certain big box store allows customers to sleep overnight in their cars in the parking lot while they are traveling? What you might not know is that there are other travel advantages to using a big box store or national chain to fill your prescriptions. The How To Cope With Pain website and blog shares the low-down with us in the post A Pharmacy Secret.

Here at Oh My Aches and Pains! I recognize that my husband is the number one reason I can leave the house and attempt to travel despite the baggage of my multiple chronic illnesses. I think that finding a great partner to share the journey of life is perhaps one of the best kept travel secrets. Read more about my recent vacation planning session in Have Husband - Will Travel.

How many of you know what a Golden Access Passport is? Or where you can find free things to do or free attractions to visit in 1,500 cities across the United States? Lisa at Rest Ministries Chronic Illness Pain Support is letting us in on all the great secret deals and her best travel advice in Travel Tips When Living with a Chronic Illness.

On the Road Called Life...

Wendy took a trip to the zoo and her life changed forever. A simple tri-fold pamphlet she picked up at an outreach table was her first step in a painful journey that changed her life fundamentally for the better. She tells her story of transformation in her post My Chronic Illness Journey – The Trip I Never Expected (or WANTED) to Take on her blog Transform Your Chronic Life.


Thanks for traveling with us and come back and see us again real soon! Join us June 16th when Patients for a Moment creator Duncan Cross hosts the one year anniversary edition of PFAM over at his blog. Submit your post by the end of the day June 13th to be included in the next edition. Thanks to all the participants, readers and to Duncan for letting me host a second time.
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Tuesday, June 1, 2010

Have Husband - Will Travel

"I Will Pack My Bags Just To Stay In The ...Image by ~evelet~ via Flickr


Robert and I were talking about traveling just the other day. We debated how many trips we have taken since I was diagnosed with fibromyalgia: he said 6 and I said 3 (and I think I am right.) We lamented that his work schedule will preclude any travel for about 10 weeks beginning August 8th. Then we brainstormed about where we should go on our next vacation.

"We should go back to San Francisco," he suggested.

"Oh man, do you remember our last trip to San Francisco?" I replied.

"Yeah, I'm surprised the trip didn't kill you! We did way too much stuff in four days," he exclaimed. After recounting how many people we met with and how my activities we crammed into about 72 hours, he said, " If we go again, we have to stay longer and schedule things so we have a day off to rest after every day we do something."

I smiled. His comments let me know he really understands what it is like for me to attempt to travel with my baggage: a multitude of chronic illnesses. Of course, taking me to the Emergency Room five days after we got home from San Francisco for a massive multiple day migraine headache probably gave him a lasting memory too. Yet I can't help but be impressed with him observing and taking notes as I have been learning how to make travel more fibro-friendly.

But I should be totally honest. The one thing that really makes travel possible is Robert. If I didn't have him to lean on and do all the heavy lifting--like driving, checking us in, grabbing the guy with the wheelchair, loading up my mobility scooter--I wouldn't be traveling at all. I'm sure he wishes we could travel once or twice a year like we did before fibromyalgia; hence his faulty memory of the actual number of trips we have taken. But I think he is also relieved that over time I have figured out a system that avoids outright disasters whenever we do get to go out of town every once in a while.

I am very grateful that I have Robert as my companion and partner for all my travels in life. It's a bit overwhelming and scary too to think about how much more I need him now that I am disabled. I am glad that he has taken the whole "for better for worse, for richer for poorer, in sickness and in health" thing quite seriously and has stood by my side throughout the trials of my chronic illnesses.
Having this great guy by my side to share this journey called life makes me feel like one very lucky sick chick.

Yes, my vacation motto is: Have husband, will travel. He is the one travel necessity I don't have to worry about packing or forgetting to bring! Isn't that right, honey?
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