DAY 21: WEGO Health's National Blog Post Month

DAY 21 - Advice for newly diagnosed patients....

Dearest new fellow Crohnie warrior,
I am going to give you a quick ten minute crash course on everything I wish a fellow Crohnie had told me when I was brand spankin' new to the CD game. In point form. Because who doesn't love point form when reading something quick?

• Don't underestimate what you were just told. Crohn's Disease can become very serious, very fast.
• Listen to your doctors. If you are very sick an this is why you have been lead to this diagnosis then they are just trying to keep you alive at this point.
• For goodness sake, take your meds.
• And take them when and how prescribed.
• Prednisone, while making you feel like Spider-Man AND The Hulk simultaneously and giving you emotions and cravings like a pregnant woman, will work wonders on your gastrointestinal symptoms.
• Coming down off of prednisone is horrible. The high fades; the symptoms return. You will most likely be put on a longer term drug by then. I promise it will suck in comparison.
• At this point you will hate your doctor.
• If/when this med doesn't work you may be put onto a biological drug like Remicade. Do it! It will change your life.
• Remicade will be a love/hate relationship.
• Go to the ER if you feel something is wrong. I went three times in a week and a half even after them insisting that I was fine. WRONG! I had an infection that would have been fatal if I didn't keep up on it.
• If it's not an emergency don't be afraid to "bug" or "annoy" your doctor. It's their job.
• Crohn's can happen anywhere from your gums to your bum. Other symptoms are likely. Tell your doc, it's probably related and fixable.
• Buy an iPod. Doctors offices are boring. And you're about to be visiting a lot of them. Or take up an easily portable hobby.
• You can choose to let CD define you, or you can say Hey! I have it. I have to deal with it everyday but it's just one aspect of me.
• Read "The Spoon Theory" ( http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ )
• Laugh. I promise this will do you good. I double pinky promise! :)

This will get you started. But I'll keep you updated as I experience them as well. Stay tuned!
:D

P.S. Oh ya! When your mouth swells up and your gums are inflamed eat freezies!

DAY 20: WEGO Health's National Blog Post Month

DAY 20 - "A health moment I regret is...."

Before I tell you I need to let you know about the events leading up to my one event that started the downward spiral that is my non-existent health.

I've always been sick. I had tubes in my ears at 10 months old because I was one solid ear infection from birth. I had strep throat more times than I can remember including 6 times in the winter of '99. It was my own personal Y2K. I always got stomach bugs. Always got colds. My immune system seems to have left in utero never to return. Until a mid-September day in 2002. I had got home from school and spent my usual 30 minutes in the bathroom. But when I was done I was greeted by something rather alarming in the toilet (here comes the gross bit). And there staring back at me was a whole lot of blood. I panicked and the very next day I made a doctor's appointment. When there he hummed and hawed about what to do. I had been complaining to him for years and years about some very vague symptoms; diarrhea, vomiting, nausea, fatigue. But this was the last straw. He ordered a butt load(pun totally intended) of blood tests and decided to send me onto a gastroenterologist for a colonoscopy. Well being 12 years old the sound of a person putting a tube up your arse sounded horribly painful and incredibly embarrassing. So I did the blood tests (rather begrudgingly as most 12 year olds hate needles. If only I had known the pokes to come!) and when the doctor never called to say that they contained anything terrible or life threatening I let the colonoscopy go unperformed.
This is my biggest health regret to date.
I wish I had followed up with a specialist appointment and a colonoscopy when I was 12. I'm sure I wouldn't be as sick or have suffered as much since then if I had. I would have felt better. I would have had a better quality of life. I would have done better in school. I wish this most of all. But that was then and this is now. And I am thankful for every breath I get to take as of being diagnosed two years ago.
:)

DAY 19: WEGO Health's National Blog Post Month

DAY 19 - Write about life and death.

"Death is for the dying...."
Unfortunately I have had too much experience with this concept recently. My best friend Aly committed suicide very suddenly on June 22nd. And I can't believe in three days it will be five months ago already. It seems like this morning that I was cheerily Facebooking her about camping and her upcoming birthday. The littlest thing can set off a memory of her. I think about her everyday.
Her death has also brought me closer to the realization that life is short. Delicate. Sometimes unlived. And with a chronic, potentially fatal if not taken care of disease (or two) you really appreciate everyday. I saw what her family had to go through and it nearly ripped me apart inside. It raised more questions than I can answer.
What would happen if I died tomorrow? I don't know. What would happen to my belongings? My car? I don't know. How would people remember me? As a good person? As a tragic, hopeless case of health disarray? I don't know. How would my family cope? I don't know. And what would happen to me?
This scares me most of all....

"Life is for the living...."
Life is beautiful. Life is amazing. Life is fragile. If you get a chance to live it. And I mean not just walking through the everyday like a mindless drone going to work, coming home from work, going to bed to work all day again tomorrow. But if you TRUELY live everyday to the fullest then you are making your life count for something. It can be the smallest things. Pick up a pinch of sand. How many grains are you holding? 100? 1,000? 1,000,000? And each of those little specks came from a bigger rock that has eroded hundreds and thousands of years ago. This sand could be older than your mother's mother's mother's mother's mother's mother's mother. If this doesn't blow your mind then you are not a full life liver.
Or a 1 year old baby taking his first steps. 365 days ago he wasn't even part of this world outside of his squishy little waterbed. And now he is just one step closer to having his own life, kids, career. It's all in the circle of life. Nants ingonyama bagithi baba! Sithi uhhmm ingonyama! Nants ingonyama bagithi baba! Ingonyama nengw' enamabala! Sorry, Lion King Circle of Life tangent....

But what I am getting at is if you are lucky enough to be given a life, as horrible or wonderful as it might be, it's still yours. Your loved ones that have passed will never get the chance. Aly will never get the chance. Somehow, in time, i have to try to be OK and make peace with that. So I will take the chance for her.
Today I choose to live!
:D

DAY 18: WEGO Health's National Blog Post Month

DAY 18 - "I want to change this about healthcare..."

After extensive thought both last night and all day today I've come to the realization that there's nothing I would change about the healthcare system in Canada.
I know a lot of people complain about wait times and doctor shortages but what they don't realize is that we have one of the best healthcare systems in the world.
For example, after a very quick google search I found that the average cost of a doctor's office visit can be anywhere from $50-$250 depending on where you live and the doctors rates. That's a lot of money! If you live in Canada, how much did you pay the last time you had to visit the family doctor? Nothing.
To put this in even more perspective here is an idea of what I would owe if I lived in the USA(and this is only the last 18 months)....

4 CT Scans: $4,971
2 MRIs: $5,516
3 Day Hospital Stay: $34,488

That's $44,975 before regular doctors visits, specialist visits, blood work tests which can cost up to $1,000 for specialized tests, drug costs....

This blows my mind! I can't even add all of the numbers up because it makes me physically ill to see what other people, some even sicker than me, have to go through just to see a doctor or just to get emergency care or medication or anything to help their bodies. It makes me sad.
It also makes me so happy and so thankful that I was born on Canadian soil and can reap the benefits of our free healthcare. As many problems as the Canadian government has I believe that free healthcare is one of the best things they have ever done.

And for that I am so proud, happy, exuberant, appreciative, glad, patriotic, excited, thankful.

DAY 17 - WEGO Health's National Blog Post Month

DAY 17 - My strengths and weaknesses post.

My weaknesses....

• I procrastinate. Not on everything and never on important things. Just some things.
• I whine. I try not to. And I really try not to on this blog but somehow I still manage to do it.
• I hate to clean. But who does really?
• I'm addicted to Netflix. $8 a month people! Who can pass that up?
• I eat too much junk food. When eating fruits and veggies hurt it's easy to get caught up in the sugary carb goodness.
• I don't check the iron levels on food.
• Sometimes I do check the iron and eat it anyway.
• I have absolutely HORRID veins. IVs are a nightmare.
• I worry. Too much. And usually about the wrong things.
• I am bad under pressure to try and write lists.


My strengths....

• I have the ability to see the good in people when others can't.
• I'm really good at crafts.
• I can laugh. At everything. You have no idea how proud of this I am.
• I can eat pop tarts, mini Ritz crackers and muffins like a champ.
• I can eat blanched carrots, broccoli and cauliflower like a champ too.
• I love my family whole heartedly. I would do anything for them.
• I have a strong stomach. Always a plus.
• I am really good at making lists.

DAY 16: WEGO Health's National Blog Post Month

DAY 16 - Use a picture or video to inspire a post.


It may be a bit unorthodox to post a tutorial on a health post month but I don't care. It says a picture that inspires me and there is nothing more inspiring than Pinterest. And, actually, it does relate to my health in the fact that I felt so good one weekend that I had enough strength to build it.
Here is my inspirational picture....




http://www.trianglehoneymoon.com/2010/11/01/how-to-make-an-upholstered-headboard/
 

So I decided to make it for myself.

Materials:

• 50' x 40' 1/4 inch ply wood. (I was worried about getting the right size because I don't have a saw to cut it but the nice men at Home Hardware cut it for me. I had to buy a big piece but they cut it to the dimensions I wanted. I even got to keep the extra pieces which will come in handy later ;)  )
• 1.5 metres of fabric. (I sprung for upholstery fabric to make it look better.)
• 5 metres of batting. (You can do it with 3 but I wanted a more fuller look so I put an extra layer on. It was also on sale at Fabricland for only $3 a metre so that was a plus.)
• Staple gun.
• Staples.
• A few large buttons. (I used 5 that I had laying around in my button box. And it doesn't matter the colour because you are going to cover them later.)
• Needle.
• Thread.
• Hot glue gun.
• Glue.
• Scissors.
• Two Flush Mount Brackets. (I didn't end up using them because of the way the studs are in my wall but you may want to use them.)
• A few nails. (If you are going to stand it up like I did.)

 

 

 

 

Step 1: Lay the batting out on the floor in as many layers as you choose. I did three because the batting wasn't very thick. If yours is thicker you may need only one or two. And make sure you smooth them out very well so that your finished headboard doesn't have any bumps or lumps.

 

 

 

 

Step 2: Lay the plywood on top of the batting making sure you pull the batting taught underneath the wood and that you can see the batting around the edges of the wood.

 

 

 

 

Step 3: Trim the batting so that there is about three inches hanging out all around the plywood. Use the staple gun to staple the batting to the back of the ply wood. I cannot stress this enough, you need to pull tight before you staple and hold it tight while stapling to avoid buckles. I did the top, then bottom, then left, then right. It helps to keep it taught.

 

 

 

 

Step 4: Iron your fabric thoroughly.

 

 

Then employ steps 1-3 the same way to attach the fabric to the headboard. And you will be left with this....

And the front will look like this....

 

 

 

If you choose not to attach buttons then you can add the flush mount brackets or legs now. If not continue....

 

 

Step 5: Covering and attaching buttons. Get your button.

 

 

 

 

Step 6: Cut a circle of fabric about an inch bigger than the button.

 

 

 

 

Step 7: Thread needle around the outside of the fabric circle, place button in the middle, draw up edges around button and secure.

 

 

 

 

 



 







 



Voila! Finished button! Make 4 (or however many you are making) more....

 

 

 

 



Step 8: Measure out where you are going to put the buttons and place staples into the board under where your buttons are going to be placed.

 

 

 

 

Step 9: Use your hot glue gun to glue the covered buttons on top of the staples you just put in. And you're done! Just attach the flush mount brackets to the headboard and the wall according to the instructions and hang. Or nail your headboard to two pieces of wood and stand behind your bed frame. Once your bed is pushed up against it you can't even tell that it's on posts.

 

 

 

 

 

Step 10: If you have enough fabric left over make yourself a fancy matching pillow. Thank you again Pinterest!

 

 

 

 

Try it out for yourself!

:)





 

DAY 15 - WEGO Health's National Blog Post Month

DAY 15 - Write what it's like for someone to travel with your condition.

When I think of this question I become verklempt with emotion. Let alone when I'm actually forced to actually pack. It makes me want to stay home. But here we go. What goes through my mind when packing to travel....

• Before I can even think of going I need to consider my Remicade schedule. If the trip is a long one will it be on a Remicade day/week? If so, no go. Will I need to take an airplane within one week after getting Remicade? If yes, then no. It's not worth the risk of getting stuck in a metal tube with meningitis, malaria or measles just waiting to infect my body when my system is on reboot.

• Am I already sick and am I leaving the country? If both are yes then I can't go. I just can't risk getting sicker in a different country where they a)Don't know or have access to my medical records, b)May have less than appropriate medical facilities capable of taking care of me if something is wrong or c)Not have a free healthcare system. I can't afford a $40,000 hospital bill.

•If everything appears to be OK with these things then I move onto the actual logistics of the trip. How am I traveling? Car? Train? Airplane? Boat? Hovercraft? Believe me, it matters. Do I need to go to the doctors and get any prescriptions refilled or any new ones made? Any "just in case" prescriptions? Any vaccinations?

•Packing for an airplane. I need to put all of my meds in my carry on so I know I have them in case of luggage delay or missing luggage. I need to check the airline's regulations for liquids, pills and powders as I have meds in all of these forms and getting through security is a potential nightmare. Also, I bring three times the amount of meds I'm going to need. You never know when a storm will blow in and you will be stranded.

•Packing for the car. All of the above rules apply except I can pack my meds in my suitcase. Less chance of losing your luggage when it's sitting in the backseat or trunk.

•The food at the destination. What will I be eating there? Will it upset my stomach? Should I bring my own food? Or at least my own snacks? All things to consider....

This is just what I can think of off the top of my head. It kind of makes me want to reconsider the trip me and my friend are going to take in April.

Naw....

DAY 14: WEGO Health's National Blog Post Month

DAY 14 - My life as a reality show.

So when planning my post it actually turned into more of a soap opera but anyway, here goes....


The rich head honcho of the town is played by my brain. Like the man who has so much money he runs the town my brain has full control over everything I do.
The rich head honcho's bratty son is played by Lil' Crohnsie Bit. Having a drug problem and throwing random temper tantrums are common problems between both.
The roles of the two beautiful women that the head honcho's son are currently both dating are played by none other than my eyes and mouth. One day Lil' Crohnsie Bit messes with one one day, and the other the next.

The part of the mysterious gangster that comes to town one day and throws the whole town on its head is played by my Hemachromatosis. It kind of just showed up out of nowhere and gave my brain a run for it's money.
The part of the other, younger stranger that shows up to town shortly after the first gangster and he turns out to be that gangster's son is played by my heart palpitations. There had to be a reason for them to be there all along! *GASP!*
And last but not least the random person that gets hit and killed by a stray gang fight bullet is my liver. With all of the iron in my body that sucker never had a chance....

Now on to the resident hunk that never seems to want to put on his shirt. This is played by my hip arthritis. And the girl that falls for the hunk is my knee arthritis. And of course their illegitimate love child is played by my ankle arthritis. But when the hunk has an affair with the town's other beauty this is like when the arthritis moves into my arms and hands.

The "futile at best" police force is the Remicade I receive every 6 weeks. It tries it's hardest to rein in the residents but with so many storylines going on at any given time they get lost as well.

Other citizens sometimes get pulled into the action (AKA iron levels, platelet levels).

What will happen next on "Days with My Body"? Tune in next week(or never because it's absolutely ridiculous) for the exciting conclusion!

Did anybody follow this?
XD

DAY 13: WEGO Health's National Blog Post Month

DAY 13 - Book report. What is your favourite book and how does it tie into your life?

For today's post I've decided to review my favourite Crohn's book.
I've been putting off writing a review for some time now. It's not because I don't like the book. In fact it's because I'm afraid I'm not going to do it justice. But I promised the author I'd write a review so here we go.
This book is called The Foul Bowel: 101 Ways to Survive and Thrive with Crohn's Disease and it is written by John Bradley.
I have read this book three times now since January and every time I read it I feel more like I'm reading my life story. Mr. Bradley also has Crohn's Disease and has had a rough go of it. From surgery to surgery you dive deeper into the life of a strong CD warrior. While he is regaling the reader with his story he is writing with an English wit and humour that could potentially wake up your mother AND your sister when you have a laughing fit at 1am so readers beware. He also gives 101 tips from hospital ward etiquette to everyday mental attitude enhancement to talking to doctors to get better health results. In amongst the ridiculously awesome writing there are some very creative drawings done by Rose Hutchings. These add to the majesticness of this book. And all of this from a (somewhat) local author. What could be better?
Here is one if my favourite quotes from The Foul Bowel....

"Firstly, it's most likely going to be for the rest of your life so, by definition, you cannot beat it - it will always be there. This then means that you should not try to live your life exactly as it was before you were ill. That life is gone now. But that doesn't mean you just give up and become a victim, because then you will lose control of the direction of your new life to the vagaries of your illness. It's about give and take. Sometimes you can live as you would have done before, but there are other times where you must give precedence to your illness." (Page 116).

This paragraph is very true. When you get diagnosed with a chronic illness it's hard to realize that you will never be able to make a life choice without considering everything that could go wrong with your health on any given day. And then there are days in which you feel so good you momentarily forget that you are different. Spot on!

My favourite tip has to be #78: You Have to Laugh. While sharing this tip Mr. Bradley isn't speaking of Crohn's per say (it's actually a hilarious little tangent about a fertility clinic parking lot incident. Very funny!) but I apply this tip in my everyday. Somehow if you find something to laugh at it makes the day easier to get through. Wether it be an Internet picture of a funny cat or laughing at a witty television comedy everyone needs to laugh.

The Foul Bowel is an incredibly well written book and it is easy to tell that a great deal of time has been spent on making it the best it could be. Thank you John Bradley for giving Crohn's patients and their families an excellent resource for advice, tips and even humour.
If you have any qualms about ordering this book let me just wipe them from your mind right now and tell you to order it. Right now! The link to the website is below. You can read the first three chapters there as well. And if you're lucky he might just send you a signed copy.
:)

www.foulbowel.com

DAY 12: WEGO Health's National Blog Post Month

DAY 12 - Call BS on something. What is something that is just ridiculous?


I thought long and hard about what I wanted to call BS on. And I came up with a few winners. But I just didn't feel the need to vent about any of those things. And if I don't feel I need to vent then I find I don't get a well written post that makes me happy when I read it back.
So my topic for today shall be "it's BS for women to shave their legs in the winter". I mean who are we kidding? Who really enjoys shaving their legs? Is it not one of the only things that suck about the summer time? Do we really want to have to deal with that all winter as well? And I don't know about y'all but it gets cold here in Canada and any extra layer of warmth helps in my opinion.
And while I'm on the topic of legs and warmth I want to call BS on not wearing socks in the winter. I don't care if you're warm blooded, have warm boots or are acclimatized to the cold weather. If you refuse to wear socks then your kid(s) do too. And then I end up looking in the playroom for half an hour for the very expensive socks he/she refuses to wear and you want back.
And while I'm on the topic of kids refusing to to wear articles of clothing; hats and mitts. Teach. Your. Children. To. Keep. Their. Hat. And. Mitts. On. From. The. Day. They. Are. Born! It makes my job a hell of a lot easier. Replacing articles of outdoor wear in the middle of -30 degrees Celsius weather a bunch of times causes me a great deal of grief. And if "you tried them on and it took you 10 minutes and a lot of wiggling to get them on him" then it's a fair bet that it's not good daycare wear.
The same goes for those fancy snow suits that they can't get on themselves or get dirty. Now that's BS.
Where are our fancy snow suits? Adult snow suits I mean. We have all of these cool snow suits for kids and they can't get them on while adults have crappy, boring snow suits that even a 2 year old could do. Oh, and I forgot to mention that they cost an appendage if you do manage to find something decent. BS. The only nice things women can get in winter are boots.
Which brings me to my next point. I was shopping with my little sister this weekend for new boots and I saw some clearance sandals. But (besides the fact that there was none in my size) I never would have tried a pair on anyway. And do you know why? Because I didn't shave my legs! I guess everything comes around full circle. I am hereby christening it the "Circle of BS".
I may revisit this topic at a later date. But for now, happy Monday!
:)