Tired of being tired

This low energy thing is getting old.  I'm always amazed at how dynamic this disease is, and how many factors there are.  One thing can be improving while another is getting worse.  I'm definitely better than I was a month ago, but I'm still very limited.  I spent most of my day yesterday grocery shopping.

I said "my" day rather than "the" day because they aren't the same thing.  "My day" is the select hours within the actual day that I feel strong enough to get off the couch.  I look fine, and my spirits seem to be up, but I'm still not able to do a whole lot.   I really need to pace my energy properly, and it's easier said than done.

So poor little Lane is tired because he went shopping....if you are rolling your eyes think again.

-Every single car ride to 8th street is risking the humiliation of pooping my pants or otherwise.
-A couple of weeks ago I threw up into an empty travel mug at a red light, then proceeded to my doctors appointment and carried on with my day.
-Having to "go" all the time causes so much stress and frustration.  I'm comfortable with my condition, but it fucking sucks when you leave your shopping cart to run across the store to the bathroom, just to come back (granted, 20 minutes later) and find the staff took it away.
-Or waiting in line for 10 minutes at the bank teller, making it aaaalmost to the front of the line, and then having to run away and find a washroom (they usually don't have public ones so I either have to seriously bolt, or embarrassingly beg and plead the staff to let me use theirs).  In situations like this by the time I'm out of the bathroom I'm exhausted, embarrassed, and sad so I usually just go home instead of getting back in line
 - Not to mention the stress of feeling I always need to justify my behavior!!!

Just stop for a second and try think of what kind of stress levels these situations can cause.  Now think of those acute jumps in stress happening multiple times per day and the compounding effect that it would have over a person for TWO YEARS!  At this point I'm chronically stressed, really on-edge all the time.  I have a seriously hard time calming down. 

So yeah, literally all I did yesterday was make a trip to the health food store, to the hospital for bloodwork, and then to superstore, but by the time I got home I was done.  Driving, crowds, lines, and not knowing where the nearest bathroom is all make me extremely anxious so it was a big day.  I work really hard to listen to my doctor for what foods to eat and carefully plan out meals, but $400 worth of groceries later all I wanted was a nap and someone to make me soup.  I didn't even have it in me to unload the dishwasher, let alone preparing anything.  I pride myself on eating nothing processed or read-made, but I always underestimate the labor involved in actually preparing healthy food.  It just left me feeling that I honestly would have been better off sleeping all day and eating "regular" food. 

What's better in the big picture? Being tired and strung out to the max with an empty belly and dirty house full of unprepared superfoods, OR, being calm and well rested with a belly full of cereal.  I just don't know anymore. 

On a more positive note I did get out this past weekend.  Lauren, Mark, and I went to Lauren's cabin at Candle lake.  We also camped a night at one my my favorites, Steepbank lake.  I am so thankful for my friends, without them I wouldn't be able to do these things that I love. They literally did all the work, packing and unloading, cutting the firewood, etc, and let me just lay around.  I felt so lucky!!

It was very peaceful up there.  People try to advise me against going out and living life because I am sick, but what do you think is a better situation for me, being sick as a dog at my own private campsite next to the water, or being sick as a dog in the environments I described to you a few paragraphs ago? 

The stuff you don't see.

People that suffer with inflammatory bowel disease really become masters of disguise. We never talk about it, because we probably don't feel like discussing bloody poop all the time, not to mention its mostly internal, so you do not see our pain.  This stirs up a lot of internal conflict, feeling like a hypocrite all the time. 

See those pictures of me out at the lake?  I didn't include that part where I needed to swallow a whole box full of immodium just to get out of my apartment for the day. 

Do I seem a little quiet or a little grumpy at the dinner table?  Probably because the food you put in front of me is trying to work its way through my narrowed intestines and it's currently hard for me to breathe.

Do I seem really shifty and anxious all of a sudden, pacing, etc?  My abdomen is probably tensing up because I'm going to have a pain attack in 20 minutes.  Sorry but at this point anything you say to me is going in one ear and right out the other.  I'm in fight or flight at this point and my mind won't function right until I (literally) get this out of my system.  This REALLY sucks I'm  at the bank teller, or on the phone with someone, etc.   

You may have even seen Lane the cheery instructor teaching weightlifting at Freedom.  The part you don't know it that I may have only had half a smoothie that day because of my nausea.  Even if I had an appetite, I probably still starved myself that day so try avoid any pain attacks from happening while I'm coaching you.

This photo was taken two summers ago when I was dealing with a perianal fistula and abscess, which is supposed to be as painful as childbirth (difference is childbirth doesn't last for 3 months).  The only way I got out of the house was being WHACKED out on dilaudid, which is 8x stronger than morphine.  I soon became a depressed, opiate addicted vegetable.  What you see or hear from me isn't always the full story....

Good news!

As of last Friday my CRP is down to 56!! That's the marker used to measure systemic inflammation.  Normal safe range is 0-3, so I'm clearly still in trouble, but what amazes me is that I cut it in half in just 3 weeks!  My previous test was 101.  Since then my stress level has dropped tremendously, and I have been able to afford my extensive supplement regimen again.  Sure enough, I'm feeling better already.  I knew these were major factors that contribute to how I feel, but again what surprised me is how fast this is happening.  If I just cut my inflammation in half in 3 weeks, what will the next month bring?  I'm feeling very motivated, the future is looking exciting again!

Speaking of the future, still no word from Dr. Louie in Calgary.  Everyone has been asking me when treatment will start, and I simply do not know yet.  It's frustrating but communication is just impossible with the medical system.  For all I know right now I could start treatment next week, or at Christmas.  Will keep you all updated for sure though. 

Numbers aside (they aren't the be all end all) , I really am feeling better these days.  Not having to worry about working during these times has dropped my stress so much I feel like a different person already.  I'm still in a lot of pain but I'm continuing to sleep better, eating more, and even getting in the odd bike ride! 

I've spent a few more days at home which is always nice, especially when the weather is so great!

Home for a bit

Morning!  I'm currently enjoying a protein shake out in a lawn chair in the front yard.  I'm not working right now so I decided to drive home for a couple nights.  It's gorgeous out here! 

I am definitely on the up again.  I can't even describe how much better I feel with financial stress being gone, and knowing that people understand my situation now.  I felt all this pressure to work while trying to put crohn's into remission at the same time and it was driving me crazy. 

My ankles and feet are doing much better.  I almost have range of motion back and the swelling is gone.  Now that I can afford it I started some decompression treatments for my back again, as well as Chinese style acupuncture which is helping tremendously.  Also continuing to sleep better! It feels so good to be resting again.  Sticking to protein shakes, soups, rice, smoothies, etc has helped my abdominal pain significantly as well. 

 It really is amazing how much healing I can get done myself, and how much progress I can make without drugs.  If I manage my stress, eat the right foods, and take enough of the right supplements- not just once but consistently for a few days, I start to feel seriously better. Its just that all of those factors must be in place, all the stars need to align.  I can feel way better in a week, but it goes both ways. If even one of those factors is neglected I can trainwreck just as easily.  The trick is trying to heal slowly and sustainably.

The hardest part about feeling good is the internal conflict, and the guilt I feel on those good days.  As soon as I feel well, I always try to capitalize on it and enjoy the things I've been missing, but then I feel like a hypocrite because of everything people know about me being sick.  For example I bail on things ALL the time because I'm sick, whether its a family supper, going to watch a brother's ball game, even a work shift, etc.  It happens a lot because I am usually in discomfort or pain of some sort.  My good days, or good hours I should say, have been so few and far between that when it happens I want to go for a bike ride, go fishing, or even work out!  On top of that, when I want to share with everyone how exhilarating that bike ride was (that I was SO thankful for), I feel like I can;t because I very well could have just told them I was in serious pain earlier that day.  See what I'm saying?  People do not understand that with crohn's it is possible to be surprisingly functional while still severely ill.  That is why it is so easy to disguise.  I'm over hiding it now though, it feels so much better to be open. 

Lauren is in Ottawa for the combined events Pan-am cup right now!  She gets to compete against the worlds best on Thursday and Friday.  While she's gone I've moved home for a couple days, I'll plan to schedule treatments all for Thursday or Friday so I don't have to make too many trips. That's it for now though, thanks for reading!
 

Erythema Nodosum, aka lumpy shins/calves

I thought I would write a quick blurb on one of the more rare symptoms I have called erythema nodosum.  The way I describe it is like hard, bruise-like lumps under my shins and calves.  A lot of ankle and foot swelling usually comes along with it too. It is very rare, here is a more formal description:

"Erythema nodosum, a painful disorder of the subcutaneous fat, is the most common type of panniculitis. Generally, it is idiopathic, although the most common identifiable cause is streptococcal pharyngitis. Erythema nodosum may be the first sign of a systemic disease such as tuberculosis, bacterial or deep fungal infection, sarcoidosis, inflammatory bowel disease, or cancer."

"In addition to infectious colitis, other gastrointestinal diseases, such as ulcerative colitis and Crohn's disease, are associated with erythema nodosum. Erythema nodosum with abdominal pain and diarrhea may reflect acute flare-ups. Firm control of colitis may prevent further erythema nodosum; suppression of erythema nodosum in the patient may be considered an indicator for disease management.22 As many as 50 percent of patients with Behçet's syndrome have associated erythema nodosum.4 The biopsy-proven coexistence of Sweet's syndrome and erythema nodosum has been documented.23" 

(http://www.aafp.org/afp/2007/0301/p695.html)

It's mostly frustrating because I would like to move around a lot more!  Ice and elevation helps the swelling but not the pain.  Its just a matter of systemic inflammation that will calm down as my whole disease calms down.

Just thought I would share this because its another manifestation of this disease that people don't see, yet can be very debilitating.  Its not just a gut disease people!!!

As for how I'm feeling today, definitely still low energy, but I'm not feeling quite as depressed as usual.  I'm still just lying around on the computer, but my mood is improving.  Definitely having a better day overall!

Weekly update

I'm mostly just blogging right now because I have a video I really want to share, but its been a few days and I know people are reading this bad boy so I'll give a quick update:

Good- I'm not only sleeping better, but also resting more.  I feel like I've done a good job of de-stressing and am a lot calmer than I have been in recent weeks.

Bad- I'm still SUPER sick.  Lots of intense pain lately, the cramping and bloating isn't a good time.  Worst of all however is the lack of energy.  I seriously need to get my iron levels back up because I'm a total zombie.  Getting up off the couch gives me a head rush and going up the stairs makes me dizzy.  Lack of motivation in my opinion is the worst symptom a person can have. Things like taking handfuls of pills, drinking nasty green juice, and driving yourself to acupuncture appointments aren't all that fun even when your healthy, let alone when you are having troubles getting out of bed.

Ending with more good- If you are reading this you are probably aware of the fundraising campaign that Lauren started for me.  Told you she was the best girlfriend ever.  We have raised over 4 gran in less than 12 hours!  Insane!  I'm honestly too overwhelmed for words at this point.  This has alleviated so much stress.  I'm getting in touch with Dr. Louie on Tuesday morning and hopefully we can get started right away!

Anyways this is the video I was talking about.  This girl is awesome!!!  She frickin nailed it!  I know exactly what shes talking about.  If you watch just one link that I share, make it this one:

Everything from getting good at hiding it, never talking about it, looking fine, etc.  It's like she took the words right out of my mouth!! 

Still Burnt.

I'm getting tired of being tired.  Bored of being tired.  There are 100 things I can and should be doing to feel better right now but I'm seriously lacking motivation these days.  I'm so tired and weak that I don't even want to cook for myself anymore, and things like taking the garbage out just seem like massive tasks.  I know I'm not myself because I really just want to lie around and watch TV all day.  Usually if I'm burning through seasons of a show its because I'm physically unable to go out and do stuff, but right now I literally just want to lie around and watch TV.  Nothing interests me and it sucks!

Lauren and I went home and had the acreage to ourselves for the past weekend. I ate like crap, but I went out there to de-stress, not to work on my diet.  I splurged on a bunch of ice cream and ate way too much baking but at least got it out of my system I think. It rained basically the whole time, which is totally fine because all I did was sleep.  I was definitely wound up from weeks previous because I basically passed out the entire time we were there.  Maybe I'm still catching up on sleep debt?  Despite the weekend like I said I am still exhausted all the time. 

My foot/ankle/achilles pain was bad over the weekend as well.  For a couple of days my feet were just throbbing and burning hot.  Ice and elevation definitely helps with the size, but not really the mobility or the pain.  Other than that there isn't much I can do because its just a result of the systemic inflammation I'm already dealing with.

Finances are still a frustrating struggle.  I've already had to give shifts away this week because either my ankles are in too much pain or I'm too fatigued to be on my feet coaching.  Frustration isn't a strong enough word to describe how it feels to constantly bail on shifts you were just asking for because your broke.  If I could just afford the treatments and supplements I needed, I would have the energy and the mobility to work again.  One week I'm asking my boss for more shifts because I can't pay my bills, then the next week I'm getting rid of all them on short notice trying to explain to staff members that I am sick.  All while I look perfectly normal and they start to think I'm full of shit.  Maybe I'm just paranoid, I tend to be, but I just hate how nobody ever truly gets it. 

On a positive note, the weather finally improved!  I forced myself to go out and get some sun on the lawn today.  Its supposed to be nice all week so I'm going to take advantage of that.

Lauren had plenty of friends to keep her occupied when I slept all weekend:

Speaking of which, free kittens available!