Final Goal

In my latest 'Ask Me Anything' post, I had shared my most recent blog about deciding not to have children.
In that post it was clear that our family is complete and that our lives are full.
This question was then posed:

"What is your final goal in your life?"

This is a bit of a difficult question to answer.

Most importantly, I hope I have decades of life before I have only one, final goal.

It is not like I have this list of goals for my life that I am working towards. I have always had pages and pages-worth of small little goals in various areas of my life. You know, there are goals about the house, there are goals for places to see and things to do. I try to focus on the little to intermediate goals, because little progressions lead to bigger goals.

But if you want me to tell you about my BIG life goals, I will try to answer as best I can.

1. I want to always focus on the relationships that I have. Those are one of THE most vital parts of living a happy life (for me specifically). Family comes first. I want to be able to see my brother and his family more often, I want to be able to see my parents and my friends more often, and I plan to start writing old-school letters to friends I cannot see on a regular basis.

2. I would love to become a published author - to have a book deal. To have a book of some sort on the shelves of every major book retailer in Canada.

3. I would love to do something extraordinary with my singing. I know that there is only so much that I can physically do, so I have had to work on this in a very different way, but the goal is still there. I would love to release another cd at some point, perform background vocals for someone exceptional, and I want to sing on a stage again. Not just any stage, but a stage with a huge crowd. The anthem at CFL or NHL games. A background vocalist for a concert. Hell, the LEAD vocalist at a stadium with tens of thousands of fans. It may be far-fetched, but it continues to be a goal.

4. If I am ever able to travel, I would love to see the East Coast, to go to a Seahawks Game IN Seattle, I would LOVE to go back to Europe. I would love to go to Cedar Point and ride every single rollercoaster. I would love to go back to Disneyland, to spend a weekend in Jackpot, Nevada, to see the Galapagos Islands, to go on another cruise, to do a cross-country train trip in Canada, to learn how to surf in Hawaii, to have a romantic getaway in Tahiti, and to visit our ancestral castle in Scotland. These are more wishes than goals... but I am hoping that the East Coast and the Seahawks game are achievable in the future. I plan on experiencing some virtual reality activities to get a glimpse of some of these places and some activities I have always wanted to do but couldn't due to health reasons. (Like scuba diving, hang gliding, etc...)

5. I want to learn. I want to continually cultivate my curious mind and learn all the time.

6. I want to improve my art skills and continue improving them. I would love to be able to make a statement through art and literary works.

7. I am working on my cooking skills all the time. I would love to take little courses in the culinary arts - but if I cannot take classes then I am focusing on trying new recipes on a semi-regular basis. (I just learned how to make chicken roulade AND French macarons, which I need to continue working on). I also watch a lot of cooking shows and then try to make similar recipes.

8. I want to continue kayaking, camping, and practicing yoga. I want to go swimming more often (which is really difficult with a chlorine allergy and living where the lakes are too cold to swim in for 10 months of the year). My goal is to simply increase the amount of time I spend in these activities.

9. I want my husband to travel. This is a big goal. There are many places he has always wanted to travel, so I would really love for him to go even though I would not be able to join him.

10. I would love to be able to help out my family as much as they help me. My health is a burden. There is no getting around this fact. As stubborn as I am and as independent as I can be, suffering with health conditions is a burden on time, finances, goals, and oh so many aspects of life. I would love to be able to return the amount of time and energy my family has spent on me.

But my most important goal, the epitome of life, my purpose, my daily and lifelong goal:

I never want to take love for granted. I want to enjoy every moment, see the bright side of nearly every crummy situation, and remain grateful for everything in my life. Maintaining this grateful feeling and this love is the most important goal I will ever have.

I hope this answer has been satisfactory. :)
Thank you so much for participating in the 'ask me anything' posts. These questions have all been illuminating.
Bring on more questions - especially the difficult ones. The difficult questions offer the most amount of soul-searching.

Complete Family

Well, hubby and I decided to adopt a second puppy. The driving force behind it was so that our older pup has a little brother to (eventually) play and hang out with. Of course it doesn't hurt for us to have another little being in the house, all cute and cuddly.

There is no question that I have had to adjust expectations over the years due to illness. The idea of having kids quickly disappeared long before I was ready to give up that dream, and lifelong aspirations had to be.... redirected.
Apart from random emotional moments and feelings of a bit of loss, I have harbored only a little resentment. Sure, my life took turns I never would have anticipated, but it has led me in directions I have loved to explore.

My greatest aspirations in life - like marriage, a family, a home, that white-picket-fence feeling, and love - have all been fulfilled. Love really truly is the most important thing. Whether it is great friends that are always there no matter what, the love of family who are always finding a balance between concern and support, from pets, for others, for hobbies, for fellow men and women, love is the thing. The epitome of this life. Love from and for . And it's everywhere.

I am lucky.

Even though I am exhausted from staying up with a brand new baby pupper, even though my bladder is still wonky and my migraines are in full force, even though I get frustrated when pups are whining and I am stuck puking in the washroom - my life is full.
Completely full.
Now all I have to learn how to do is to stop feeling anxious and terrified to lose this wonderfully full life.
But, I guess, why worry? Try and prepare, try and keep cautious when necessary, and enjoy every single minute that we can.

My lifelong dream of having a beautifully completed family has come true.
Who cares if I'm sick if I get to experience all of this.

The Elephant Man

The Elephant Man was on tv the other day.
I had never seen it, so I recorded it on our PVR.
It is a black and white 1980 film, starring Anthony Hopkins and John Hurt, that tells the basic tale of John Merrick (really Joseph Merrick) who was severely disfigured.

Today was a crash day for me, so I remained in bed the vast majority of the day. An intriguing film to curl up to with blankets and snacks was exactly the sort of night that I needed.
So, while lying in bed, pouting from my overall malaise that just will not let up, I huddled in for a movie night.

Almost instantly I felt guilty for feeling sorry for myself at all.
This man had such a difficult life. Far more than most. Not only that, but he was also living in a time when people like him were treated almost solely as circus 'freaks' and 'invalids'.
Every breath for him was laborious.

I am unsure of whether or not the film stayed relatively true to his life's story, but I truly hope that some specific sentiments were, in fact, his true words and/or thoughts.

There was a particular phrase that really touched me:

"I am happy, my friend. I am content. I am fulfilled, because I know that I am loved."

It's such a profound idea: that love really can make such a monumental difference between being miserable (and beaten) to being content - even in the most difficult of situations.

Love is a miracle in and of itself. Whether it is a friend, an animal companion, a child, a family member, a passion, a talent, faith, etc... feeling love can get you through anything. It may not fix anything, it may not even save someone, but love can offer something far greater that goes beyond our understanding.

I am grateful to have found love in various forms.

A Long-Pondered Question

I was recently asked what my thoughts were regarding dating people who are chronically ill (sometimes severely).

Q. What would you think about dating someone who had similar health problems as you do?

A. I am absolutely not against it. When I was single, I did go on several dates with people who were very ill. I pondered this question over and over.
The illnesses themselves, apart from the devastation of watching a partner suffer, was not frightening in particular. What I found to be bringing up hesitation was the idea that we would have difficulty taking care of one another. If both people have severe chronic illnesses with episodes of flare-ups that render the person bedridden, and both experience flare-ups at similar times, that can be a difficult equation. There would have to be some sort of agreement of investing in home health care so that nurses come in weekly or daily or monthly - whatever is necessary - so that both partners receive the necessary care without putting the other's health in jeopardy. The only other concern would be communication. If the communication is poor, both partners being ill could lead to a competitive resentment -> one assuming their pain is worse than the other's, comparing, one-up-ing, and breeding resentment. What is the phrase people use - Pain Olympics? Who suffers the most? Who has it worse? Who deserves the most attention? That kind of relationship would be problematic in various areas.

With that said, the bottom line is not what, but who.
The person who is 'right for you', the person you want to spend the rest of your life with, your person, with whom you share everything, is what makes the difference between being able to handle it and crumbling underneath it.
Those in my past that dated me and could not handle the illness aspect couldn't handle it because I was not the love of their life.
It is staggering how different things can seem with the love of your life.
With any previous exes, it is possible that if they suffered from severe chronic illness I may have been scared away. But if Rj (God forbid) ever suffered from exactly that same illness, we would figure things out, no questions asked.
It is absolutely a matter of who you would go to the ends of earth for...

My personal viewpoint is that as long as I go into something with openness and honesty, communicate about the illness and what to expect, then it will turn out how it is supposed to turn out. I like to go into things eyes wide open if at all possible.
Circumstances are different for every person.
My advice is not to write anyone off just because of illness or baggage until you have had a conversation or you spend some time together. It might surprise you what you can and cannot handle depending on the situation.

Thirties

I have always joked around that no woman ages past the age of 29. That we just have several birthdays celebrating being 29 ;).

Lately I have been having a bit of anxiety about age. Or aging I guess. I know I know. Thirties is still super young and I'll get a few eyerolls for the previous statement.
I know it's ludicrous, but I think it stems from a few things:

A) Most people tend to become more and more ill as they get older.... so already being pretty damn ill, it is frightening.

B) I was never sure I would live into my thirties. I am not exaggerating or being dramatic here. I always believed that with so many allergies and complications, that I was likely to die young...

C) As much as I tried to do everything I wanted to (and could be capable to) do, there are also many things I was hoping to get involved in if my illnesses settled down. When you are diagnosed young, you are encouraged that it is usually worst during puberty and then, for some patients, can really taper off in their twenties and thirties. My IBD had settled a bit, no remission but more controllable, but when that happened, my AS, HAE, and Hashimoto's all went berserk.

D) It was also assumed by several of my specialists that I would lose my sight to AMD and Cataracts in my thirties... Especially considering that the inside of my eyes made it appear as though I was already 70 years old when I was only 21.

E) After undergoing my total colectomy and ileostomy surgery, although I still had accidents, I no longer had the daytime urgency and the short 20 second warning before my body would expel whatever is in my system. That symptom has returned... nearly full-force now... and is getting worse. This could be just a flare-up, and with the help of Cortifoam and possibly a course of Prednisone, we might get it back on track. But if we don't, this could be bad. Like, really bad.

F) I seem to be more and more frightened of new procedures that I did not go through as a teenager. I get far more anxiety for medical tests than I used to. I need to learn how to channel my inner 14-year-old strength and optimism.

Here is the bright side; the lighter side:

A) I thought I'd be gone already! So now every day, every year, and all this time with RJ is a complete bonus!

B) I have not yet gone blind!

C) I am still watching and waiting and working towards goals and opportunities I had never even thought of - because my illnesses have steered me in directions I never considered.

D) When I was younger, walking into a drug store to buy Depends, Boost, and diaper-rash cream was horrendously embarrassing. I got really awful looks and was even treated terribly by a staff member once (story in the next blog). When you are in your thirties, however, going in to purchase those three items is still embarrassing, but not overwhelmingly so. Most assume that the Depends and Boost are for an ailing parent (sorry Mom and Dad). In addition, no one even bats an eye for a woman my age buying diaper-rash cream. It is totally for my baby, since my age would have them believe I was a mother!

E) I have also learned how to 'not give a sh^t' as much anymore. That comes with experience and age if you weren't born with armadillo shells.

The takeaway here is that I still (hopefully) have many years left. I feel as though I do - which is a new optimism for me that I never possessed as a young adult.
Some things are easier in your thirties, some things are more difficult, but I think I have become more appreciative in the daily positives as I have aged.

The best part of all of being in my thirties - I am getting married to the love of my life, my best friend, my person. We have a full life together. That is the best I could have hoped for.

The Simple Things - Cheesecake Edition

There are many different things that I love to do, try to do, and want to do in a modified way.
Part of what I love about my relationship with RJ is that we both often do little things. It is always unexpected and simple, rarely expensive, and thoughtful in a way that is simple.
He was recently away for work and I wanted to do something for him when he got back - because I missed him! And he wanted to do something for me - because he missed me! So he brought home a caramel apple (something I buy every time I go on any kind of road trip), and I decided to try baking cheesecake.
I had one of those pre-mixed packages that I just had to add the cream cheese, yogurt, and eggs into, then make the pie crust. I have never made cheesecake before, so I figured that a package was the best way to start off.
It is something so simple! Yet meaningful!

I didn't have a spring-form pan, and my cake pans are too shallow, so I opted for individual mini cheesecakes. Of course they are not perfect, and they are not decorated (I just threw on a few sugar pearls on each one for a tiny little bit of flare), but they worked! Above all, he thought they were delicious, and that's all that counts!!

Although I cannot whisk him away on a dream vacation, or surprise him with a brand new truck, or even take him on a random adventure because of my health, I CAN do the little things, like make desserts or his favourite meal, have the house tidied up and laundry finished, or just write him a nice note letting him know how much I appreciate him.

There are many parts of a relationship that are strongly affected by illness. Every decision we make has to take into account my health and various limitations. We always have to have a backup plan if we meet up with friends, I have to carry around several pieces of medical information with me everywhere we go, if we go on road trips we have to ensure that there is a hospital nearby and I often have to take my refrigerated medications along with me -> everything is a big production. When we eventually need new vehicles, we have to take into account my inability to get in and out of really low seats, with getting this home we had to be careful with how many stairs would be included in every day living. It doesn't sound like much, but it does pervade every decision we make, including date nights, food, furniture, closeness, whether or not there is an elevator in the places we go to meet people, even how to organize the house.

The small stuff - the little things that take our minds off of all of the medical nuances of our lives - wind up being the most important parts of our day, and our relationship.
The little things really are the big things. And making mini cheesecakes feels like a big accomplishment that I am proud of.
Simple.
Maybe even boring.
Still good!

#TheLighterSideofMedicine

Dreams Come True

You know, I think that in one way or another, each person's dreams do come true. Often it is not the way in which we expect. Sometimes it isn't actually what we thought we wanted... but there is happiness in every situation. We just have to look more closely to see it sometimes.

I always valued my independence. I always wanted to know how to do things on my own, but my biggest dreams were:

1. Find a kind man who I would share the rest of my life with - hopefully by age 24 so we could have kids. (Baha lil late).
2. Travel - especially to Europe. (Paris, Venice, see Vivaldi's church, etc...)
3. Get a post-secondary education and USE my post-secondary education credentials.
4. Play volleyball competitively for as long as possible.
5. Make some kind of name for myself musically.

Each of these dreams ended up being encapsulated by some pretty significant health issues - but those issues became a catalyst for some of these dreams.

Sure I wanted to travel and live abroad for years... but health only allowed for a certain amount of travel. I still made it to the countries I so desperately wanted ro visit, I gained some incredible life experience, and those trips increased my confidence ten-fold -> confidence in myself, confidence in being independent, confidence in who I was and where I was going and what I wanted out of life.

Sure I hoped to play volleyball at the highest competitive levels... but my health (and height, and skill levels) all combined to jeopardize my chances. But this also encouraged me to join recreational leagues. They were still competitive, just not on the world stage that I craved. Doing it this way instead helped me become a better player, a more versatile player, built up my confidence, kept me active (by playing on 13 teams), and helped me meet some absolutely incredible people that will always remain friends despite now seeing them so rarely.

Sure I was hoping to do a Master's in Psychology, a Master's in English, and a Master's in Music, plus a Doctorate in the former two. It took me an extra 6 months to complete my undergraduate, and without enough medical coverage, I could not afford to be a career student, and I could not be a professor without further education. That circumstance brought me to the city I now live in. I got incredible work experience and, again, ended up in a situation that I did not plan for, but which gave me terrific experience and also helped me be, again, more versatile. Not only that, but this set of circumstances led me to become more involved in music than I ever thought possible. I dove into new opportunities that seemed impossible to begin with - and yet came out the other side with a new set of skills I never thought I was capable of learning. In fact, even though I cannot actually work, I have probably utilized my degree more effectively than most students who have a degree in the arts. I finished my undergrad AND I am using that education every day in my own home.

Sure I wanted to make it as an animated Disney Princess, or be a cocktail singer at some posh martini bar, or sing on a cruise ship, or be a backup vocalist for some hotshot musical mogul, or even become a mogul myself, but that has yet to occur. When I went traveling, I DID, however, perform on a cruise ship. For the past several years I HAVE sung for some incredibly fancy fundraising events, I have performed on stages and been a backup vocalist and accompanist to some other singers with killer vocal talent, and my youtube channel views increase every single day.

Now for the big one.
The monumental dream.
The dream to meet that one man; that one person with whom I share everything. The guy who makes me weak in the knees and knows exactly how to make me smile. That kind, generous, and genuinely wonderful guy who I fell in love with, who proposed in one of the most romantic locations I have ever been.
Sure it took me until age 28 to find him. Sure I will not have those kids I wanted - especially the daughter I have thought about so endlessly. My health and the prognosis of future health issues have changed that direction. But I am unbelievably happy. I have an adorable puppy who I love to bits, my relationship with RJ is exactly the kind of relationship I had always dreamed of, and my quality of life at home is tremendous despite all of the complications. I love our boring life. Spending days at home with our pup, having movie nights in and board game nights and playing cards and eating meals together. These are all wonderful things. So if I can ignore the fact that every day is tarnished just a little bit with pain and medication and unfortunate health complications, then it seems downright beautiful.

So sure, my health isn't great. It could always be worse, and I am lucky in many ways, but let's be real here: it would be nicer to suffer less pain and deal with fewer medications.

My dreams have come true all the same - they are just wrapped unexpectedly.

I would never go back and undo the direction in which my life has gone. WITH illness.