Feeling so much better! Here's how:

Been a while since I’ve blogged.  I’m certainly in a different space now, it feels great.  To start off, here are a couple of progress pictures.  The surgery was March 11 and as you can see, it kicked my ass pretty hard:

 April 7, 127 pounds

May 11, 140lbs

 Other than the occasional panic attack every couple of weeks, my anxiety is almost completely gone.  Its so liberating to be able to just go out and do things as I please!  No more sick queasy feeling in my chest every time I try leave the house!  Since surgery I've been able to accomplish the following:

-Gained 20lbs
-Finished my exercise nutrition course
-Coached a handful of classes at the gym
-CRP (inflammation marker) down to 8.0 For a reference, the lowest I’ve ever had it since being sick was  47.  0-7 is considered healthy range, so I'm almost there
-Most importantly, I’m enjoying life again!  I’m having so much fun just going for walks to the river, driving home to the acreage, cooking new recipes, and exercising for the pure thrill of it. 

All with the following also happening since the operation:

-blood clot in my right leg
-2 percutaneous drains for massive abdominal abscesses, left for 3 weeks then right for 3 weeks.
-Huge incision over my belly button, without staples.
-1 overnight stay after removal of 1st drain, another night in emerge to get 2nd drain pulled.

One of the drains I lived with:

This didn’t happen all on its own though, I had to facilitate this recovery.  After letting myself rot for the first few weeks, I knew I had to take active steps if I wanted to speed the healing process. I committed to a 30 day exercise program, stuck to an extensive supplement regimen, and I committed to a morning routine consisting of the following:

-Push ups as soon as rolling out of bed.  10 seconds down, 10 seconds up until failure.  At first, I could only do one, by the end of the month I managed 4 or 5.  Anyone can do this!  It took less than 2 minutes out of my day each morning.
-Meditate for 15 minutes.  (I use the app headspace)
-Weigh myself

I sleep with my phone on airplane, and make a point of not turning it on until those 3 things are done.  Same thing goes for the laptop.  I’ve found texts and emails to be an even worse focus sucker when you start your day with them. I use another app called askmeevery , where you can have it ask you anything you want via text and email.  Every morning I get a text asking “how many push ups”, and another asking “how much do you weight.”  This is awesome for accountability, the guilt of typing in that “0” is enough to make you just do the damn push ups.  My other favourite part about the app is that it automatically charts and graphs all your data for you, so you can see your progress in a nice visual.

Side note- those who think weighing in every day is excessive, here is my reasoning why.  We can lose and gain significant amounts of weight even during the course of a single day.  This is due to fluctuating hydration status, how much we eat, and other factors.  A lire of water weights 2.2 pounds, so you can drink/pee that amount without even knowing it.  The amount of carbohydrates stored in the body also influence how much water weight we hold onto. Since this number can change so much without your weight “actually” changing, I like to weigh in at the same time every morning, and then use a weekly average to tell where I’m at.  Also, the scale should not be feared!! Use it as a guide for future decisions, not a judge of past ones!

At night I get 2 more questions, one asking me “what did you eat today”, and one asking “what are you grateful for”.  This is my foolproof way of keeping a food log and gratitude journal.  Writing a food log is a humbling, surprisingly effective way of cleaning up your diet.  There's something about actually writing down “ate liter of cookie dough ice cream” that makes you really, really not want to do it again tomorrow. The gratitude journal is a super effective way of well, simply being happier!

As for diet, I tried eating super clean at first, but that resulted in me just picking at my food and really not eating anything.  Eventually I just started eating whatever the hell I felt I could get down, and my body actually thanked me for it at that point.  2000 cals of ice cream and toast beat the hell out of 400 calories of  healthy food.  So for the first 4 weeks or so I really let myself go diet wise, though I don’t feel guilty about it.  With such a low appetite, having a craving for anything at all was a blessing so I indulged it, whether it was mac n cheese, bread, or ice cream.  I loaded up on that stuff, and I’m not going to lie, it was awesome.  Eventually the novelty wore off though. Weeks 5-present I’ve been doing better by eating much more healthy foods throughout the day.  I’d be lying if I said I wasn’t still enjoying some nighttime treats once my healthy “checkpoints” have been met for the day. Just because I’m conscious of it doesn’t make it any more acceptable, but its an evolving process.  If I’ve learned anything, its that small changes are the only sustainable ones. I've always found that adding good foods works better than subtracting bad ones.  Eventually the good replaces the bad, and if you eat the right stuff you won't crave the wrong stuff after a while. 

I started my first formal exercise May 11th.  A simple 30 day living room workout.

My reasons for going with this one were that:
-Strength (not silly cardio) training "wakes up" and activates your body into healing mode.  This is why simply having muscles keeps you from aging.
-it features compound movements working major muscle groups
-extremely beginner friendly, can be done anywhere
-simple and effective progressions
-written by a reputable coach (Brett Contreras is awesome)

Since 250 reps seemed a little silly, once I reached day 15 I went back to day 1 but added weight. I really wish I took pictures of my first couple workouts. At the beginning, I was so feeble I had to have stools on either side of me for balance  Keep in mind, for most of this program I had a 4 inch wire jammed in my side near my kidney. By the end, I was completing 150 loaded squats (broken into sets of 10-20) either holding a kettlebell , wall ball, or even an empty barbell.  After completing the 30 days I managed to pull of some real front squats!  May have only been 75lbs, but I felt like superman!

First set of "real" squats @ 75 pounds.  A couple months ago this was unfathomable:

My supplement regimen has been the following:

-1Tbsp high EPA fish oil
- 3-5 grams vitamin C spread throughout the day (for collagen synthesis for my incision)
-2 tbsp hydolyzed collagen protein (Incision repair, this stuff has also helped my arthritis more than any other supplement)
-1 B100 tablet
-800mg folinic acid
-30 000IU vitamin D
-25 000IU vitamin A for 2 weeks, then every other day
-Cannabis oil, in the form of either capsules, food, or blended into tea, totaling 100mg CBD and 400mg THC per day (Most effective medication I have ever used, bye bye prednisone, no more painkillers!) 1:1 CBD to THC is optimal, but I can't quite afford it.   
-2 shakes per day, each containing 7.5grams arginine, 5grams ornithine, and 10 grams glutamine.  This is an effective stack for surgery recovery, but also for healing sports injuries.
-Lots of MCT oil and Avocado oil in smoothies
-Magnesium (glycinate) 400-600mg per day
-Topical magnesium spray, 20 sprays at night.
-15mg zinc (gluconate) and 2mg copper, 2x per day

Of course none of this progress would be possible without the incredible support I have.  I am extremely fortunate to have wonderful friends and family backing me up every single step of the way.  Thanks everyone!

Cheers

Back in hospital...

Hopefully just for the night, it's been a frickin long day.

Recovery has been painfully slow.  Considering the operation was a month ago I'm really not doing well.  This infection really threw a wrench into everything and has slowed down the entire process.  It's more so extreme discomfort than pain that is getting to me.  There's a difference, but its just as bad as pain.  I do still have extreme pain once or twice a day, but beyond that its just constant abdominal pressure.  It's pushing against my ribs, my back, my bladder, you name it.  It hurts to move or breath deeply or even sit up with a neutral spine.  It's also very uncomfortable having drain tubes stuck inside of me and bags hanging everywhere.  It's weird how I was actually doing better the day of the operation than I am now.  

Last Wednesday I came in for a CT scan, which showed that the abscess currently being drained had almost dissipated, but another large collection had formed, this time on my right side.  The good news; we finally know why I'm hurting so bad, the bad news; I've got another fucking abscess.  My family doctor called me the next day with the report.  There was the large abscess that needed to be drained, as well as multiple smaller ones that will have to dissipate on their own.  The scan also showed what looked like a clot in my femoral vein.  I was ordered blood thinners (more needles, yay) immediately and was told to wait to hear more about getting the abscess drained.  Of course being Easter weekend, I couldn't get in until today.  It was a tough weekend of just waiting in pain.

Lauren brought me in at 10am this morning, and once I saw the surgeon he said he would order the test to be done and get me a bed because I would likely be admitted.  I was expecting just a quick in and out, putting in the drain only takes a half hour or so, but I guess they want to keep me for observation.  I didn't take it well, I hate being in here so I was pretty grumpy all day.  We had to wait in a waiting room until around 4 and of course no food or water allowed until after the procedure.  As I type this it sounds petty to complain about, I've certainly endured worse, its just a straw that breaks the camel's back type of ordeal.  I almost snapped this morning.  More waiting, more needles, more poking and prodding, more stupid protocols......less freedom.  I was also frustrated that they knew about this abscess a week ago and gave me no information on what was to do down, they certainly didn't let me know I should expect to be admitted.  Nobody likes going to RUH for a simple follow up and being told you have to stay. 

Anyways they put in a 2nd tube, this one hurts a lot more.  As of right now I've got an ileostomy, a wide open surgical cut (under gauze, they had to take all the staples out when the abscess started leaking through), and a drainage line in either side of my abdomen.  So yeah, the old midsection isn't feeling so hot right now. 

That was a little ranty, but hey it's been a rough go and I figured it was a good time to update everyone.  Time for the positives:

-My family and friends are amazing.  Lauren has been nothing but supportive, and her resilience through all this has been inspiring. Everyone around me has gone above and beyond to do anything they can to make me comfortable, whether its running around the city to pick up random stuff for me, putting movies in the dvd player, or just giving me a back rub, everyone has been so good.  I truly am fortunate to have so much support, some people go through this stuff alone and I can't even imagine what hell that would be.

-Home care has been helpful without being annoying or intrusive.

-The surgical incision over my belly button is healing very well.

-As annoying as this drain tube is, at least its just an abscess rather than a kink, blockage, or perforation, etc that would necessitate more surgery.

-My stoma/ostomy is working great.

-No more catheter or staples.

- I can go for car rides, etc without being scared of having to go to the bathroom all the time!!!

-Again, I have such a huge base of support.  I don't feel like anything has been too big or too small to ask for.  One big highlight has been friends taking me out for walks, or in this case wheelchair rides :)

No walk in the park (slightly graphic details)

I apologize in advance for the lack of structure for this post, I hardly have the energy to blog so it might be a bit of a ramble.

The operation itself did go great, but 2 weeks afterward I'm still battling complications.  The day after the surgery my vitals went crazy and showed definite signs of infection.  The next day they got me on aggressive antibiotics.  The abdominal pain continued to get worse and worse when it should have been getting better.  That night I rolled on to my side and a bunch of liquid oozed out and stained my gown.  Thinking it was just my ostomy leaking I buzzed the nurse, after cleaning the stoma area we realized the leak was coming out of my largest incision, the one right over my belly button.  Soon they removed a few staples and puss started oozing everywhere.  Definite infection.  It was so bad the had to leave the wound open and add an extra bag for the fluid to drain into.  This all happened around 1am and made for a long night, the nurses did an amazing job though.

The next morning I made it in for a CT scan which showed a very large abscess that had formed and needed to be drained.  That afternoon I was sent down to have a tube inserted into my belly to drain pus into, a THIRD bag hanging off of me.  So now I've got 1 ileostomy pouch, 1 incision drain pouch, and 1 abscess draining pouch.  Thank god my catheter was out by that point.  Add wheeling around an IV into the mix and I was not all that inclined to move around.

The rest of my stay has been kind of a blur, the initial drains and having the antiobiotics kick in helped significantly, but I was still in pretty serious pain.  I've been home a week now, and the drains are still flowing, I'll need them another week for sure.  They are just so cumbersome and annoying.  Monday night I threw up, and a bunch of blood and thick stuff shot into the incision bag from all the heaving pressure, we called home care and got sent to emergency to make sure it was all ok.  Everything turned out to be fine, it just made for a long stressful night.  The next morning home care changed all the dressings and stuff.

Even since being home, I've been in constant pain until yesterday really.  The good news is I haven't needed a painkiller in about 24 hours, I want to avoid those wretched things as much as possible.  I've hit an all time low of 124.5 pounds, so now a legitimate 50 pounds under my normal bodyweight.  Moving and eating are huge struggles, but I know I need to keep up with that stuff in order to heal.  I have a CT scan on Wednesday to see how the abscess is doing, and can hopefully ditch this drainage hose shortly after. 

Mom has been amazing looking after my every need here at the condo.  I've had lots of support from friends and family, just no energy for visitors yet.  I've been sleeping almost constantly which is good.  It's just been a long slow recovery and I'm growing weary.  Not a lot really cheers me up, and nothing interests me right now.  I'm thinking maybe one more week of it being this rough and once this infection is behind me I should see another boost in strength.  Anyways that's about all I have to say for now.  Home care should be here right away and then its nap time.  Cheers.

Moving forward.

This isn't an easy post to write.  In a sense, I feel like its the end of what was a hopeful chapter of blogs.  Anyways, the fecal biotherapy treatment hasn't panned out, and I will be getting surgery soon.

This July I was so critically ill, I needed surgery.  The one thing I hadn't tried yet (short of a bone marrow transplant) was fecal biotherapy, so I told the doctor (whom I had already consulted with) I was ready to go for it. This guy, who I originally met with in May has repeatedly left me hanging, failed to communicate, and showed no interest in helping me get better.  I have been suffering this entire time, and can no longer deal with this pain.  Even if I could still tolerate the pain, I can't put my life on hold any longer.

Even if I could start the fecal biotherapy tomorrow, I would have to be put on meds (that I'd likely need to drive to the states to purchase) for 3 entire weeks, then starting the fecal stuff, all the while crossing my fingers hoping it will actually work.  I've been on the verge of going to the emergency room a handful of times already this fall, and I simply can't wait that long.

Being my procrastinating self I put off even calling the surgeons office until I hit the point where it literally felt like I needed my guts hacked out right then and there.  Well, not that I haven't had that level or pain before, but its all the time now.  The constant bloating and distention is affecting my breathing, I've lost function of my deep ab muscles, and getting out of the house for even an hour is a really big deal for me right now.  It's no way to live.  So I called the surgeons office first week of November, and had to wait until the 26th to even discuss the operation I needed asap.

It was a crappy 3 weeks.  I felt like all of my fighting over these last 2 years was all for nothing.  I felt like a fool for wasting so much time, money, and energy, to avoid a surgery that I was now getting.  I felt like I was settling.  I fell into one of my depressive cycles again. Motivation went out the window,  I started binge eating, not getting out of bed, and gave up on doing physio, taking my supplements, etc.  I was seriously dreading that appointment.  I was scared to find out what my new reality was going to be.

I ended up receiving about the best possible news I could get though, and it won't be as bad.  Like I was expecting, he said he would be removing my large bowel, terminal ileum, and any other sections of the small intestine that are too far gone.  The open end of the small intestine will then be routed through a hole in my stomach and stool will pass into a colostomy bag attached to me.  What I didn't expect was that he said he would leave my rectum intact, making it possible to re-attach the small intestine to the rectum in 6-12 months if everything heals properly, and then no more bag! 
After being sick for 2 years, and suffering the last 6 months waiting for a procedure that may or may not work, 6 months with the bag is nothing.  Especially considering the diseased tissues will be removed and the toilet will no longer be my ball and chain every day.  This is not the outcome I was hoping for, but that's life.  This also is NOT A CURE.  We are simply removing the narrowed/scar tissued/inflamed/bloody stuff, giving me a chance to rest and heal again.  I think of it as if 99% of my bodies resources are trying to heal these incurable tissues, and once they are gone, applying all of my knowledge of health and wellness will actually have a chance of doing something.  Fecal therapy may still be a supplementary treatment option down the road.

I'm still not thrilled about losing my internal organs, but it feels good to have some closure.  I finally know the end is in sight.  Now that there's a plan in place, I'm back to working at the things I can control. I felt a lot less depressed after the meeting, ready to get back at it.  Blogging, stretching, journaling, coaching, eating, meditating, whatever, all that stuff seemed worthwhile again.  Though I'm in a much better head space than I was in November, I don't want anyone to think this will be a walk in the park.  Its major surgery, and January is probably gonna hurt. 
 
One more month of physical agony perhaps, but I'm going to try my best to look after myself and enjoy time with friends and family over the holidays.  I feel extremely blessed to have so many loving, understandable people around me that support my decisions and make me feel safe.  Thanks everyone.  

Crashing again

Have I ever mentioned how frustrating this disease is?

The reason I haven't blogged in a while is because I've been suffering again these last few weeks.  I typically get on a posting roll when things are going well, and then neglect to blog when I'm struggling.  I started to slip about 3 weeks ago, but up until that point was feeling great.  I had been to the gym a few times, got outside a little more, and begun a couple of night classes.

All of a sudden I started having perianal pain again, I know its pretty gross but it can be extremely painful and was quite worrisome.  My left foot swole up again, and my knees and back are always sore. Soon I became feverish, and lost all strength and energy again.  I knew this was bad news, I didn't want my old fistula wound to become infected so I phoned my Dr.'s office and left a message to no avail.  I finally got in touch with them a week later and they issued stool, urine, and blood tests.

Urine was fine, the blood test showed my inflammation back up to 150, 3 times as high as the last test.  This really frustrated me because I was doing so well, I really thought I was on the up.  It was no surprise however, because I definitely feel terrible.  The nurse left a message on my phone today letting me know he stool sample tested positive for C. Difficle, a really nasty bacterial infection of the gut.  I've had this before and it's not pleasant, but at least gives me an idea of why I feel so terrible.  The frustrating part is they left me a message Friday afternoon, and I won't be able to start anything until Monday.

I'm just really angry, frustrated, and sad from being such a vegetable.  I'm tired of the pain, I'm tired of sleepless nights, I'm tired of not having the strength to leave the apartment. I'm tired of being so alone at home constantly. Its getting old, and I'm getting impatient.  All I want is to go back to work, just to feel valued and have that sense of purpose again.

So game plan moving forward will be to tough it out for the weekend, and likely start some antibiotics Monday.  The plan for fecal biotherapy is still up in the air, all the receptionist will give us is "sometime after the 17th".  We'll see what that means.  I'm really tired of just simply surviving. 

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!
 

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!

Bloodwork/Stuck at Iron

Well as predicted, blood results are pretty bad.  Lots of stuff is too high or too low.  Bummer about the iron is although its so low, I can't get any more infusions after today because my ferritin is extremely high.  Can't seem to win here.

 I always blame my dysfunctional gut for not absorbing iron, and I do lose a lot of blood through bowel movements some days, but I have definitely been slacking on getting enough dietary iron.  My levels were always better (not good, but better) when I was juicing regularly.  I still have salads and red meat every once and a while, but I don't do well with solids right now and juicing greens is vastly more potent and absorb-able.  Like I said in the last blog, this is a bit of a wake up call to get my ass back on track. 

I got to the hospital at 8:45, but the pharmacy didnt get my iron made up until 10:30.  Once they get it hooked up its a 3 hour infusion.  So boring!  I try to sleep if I can, but its crazy busy in here today with IV's beeping like crazy.  I've got friends visiting today though.

Anyways here are the lab results.  Good news is my vitamin D mega-dosing is working!  50 000 IU's twice a week and nowhere near toxicity!

Burnt.

Ugh.  I am worn out.  Time for a vent.

It's been a tough week.  My health is really slipping again, I was trying to exercise but cannot recover from even the lightest activity.  I am averaging 4-6 hours of interrupted sleep every night, spending the night on the living room floor with a heating pad because it is easier on my back.  My unexplained knee injury is giving me troubles, and my ankles/lower legs are swelling up again.  Its called erethema nodosum if you care to google it.  Its like little bumps under my skin that feel like bruises and swell up.  My skin is breaking out everywhere, acne on my face/shoulders and folliculitis all over my legs. Appetite sucks, any time I eat anything solid or substantial I start feeling a lot of discomfort and need to lie down for a few minutes.  I know my iron is definitely low, I haven't had in checked in weeks (no excuses, I've just totally been slacking).  If I don't keep up my infusions I just simply don't absorb it.  I can tell I'm anemic again, just simple things like climbing a set of stairs gives me a head rush and makes me dizzy. 

I've been feeling a lot of stress anxiety over this.  I didn't work a single shift in May, and now I am too weak to work more than an hour a day.  My employer doesn't want to give me shifts or clients because I am always sick now.  Financial stress is definitely a huge part of all of this, but also just the pressure to get better.  I've been trying to be some sort of holistic health champion on a mission to get better without surgery, putting so much money and effort into this mission that I truly believe in, but I currently have nothing to show for it.  I feel like everyone is going to start thinking I'm full of shit because I'm saying all of this stuff works, yet I'm on a pretty bad decline currently.

Do I think I can get out of this spiral?  Absolutely.  This is a good wake up call I guess. Will blog again as soon as I get the bloodwork results.  I decided to pull the trigger and go for the fecal therapy, so I contacted Dr. Louie to see if he is still interested.  At the very least, I am on a wait list to get on ECP light therapy hopefully this fall.  Worst case scenario I know I can tough it out until then.

On a positive note, Lauren and I both have 4 days off in a row!  Super pumped about this.  Mom, Dad, and Reid are off to Montana for a baseball tournament so Lauren and I will go home to look after the acreage.  Its going to be so nice to have the place to ourselves and do whatever we feel like for 4 whole days!  I plan on resting up as much as possible. 

Will blog again soon.

Stuck in treatments all day

Decompression treatment.  One belt around the hips, one around the rip cage, and they pull apart!  Sounds fun right?  It's actually not so bad.  I've got these 2x a day for the whole week, it's definitely helping so far.  My back isn't quite as stiff, and my leg's don't ache anymore.  I'm hoping to be able to do some very light exercise by the end of the week. So that was my afternoon, this was my morning:

Iron infusion.  My intestines are so far gone I'm not absorbing iron anymore, even with supplementation, juicing, etc.  It's more effective to get it through IV for me, so I've been going once a week.  Today was my 3rd of 4 infusions.  If my levels get back up to normal it should definitely help my energy.  The treatments are lengthy, sometimes up to 4 hours.  I usually nap, but today I had my friend Britt come for a visit and bring me lunch haha.  The hospital sandwiches aren't exactly top notch, even if I ate gluten.  My nurse was also my friend's mom so I had a good morning catching up with nice people. 

So even though I've been hooked up to machines all day, I've had a pretty good day.  My energy is coming back, as well as my appetite, and I'm not in quite as much pain.  Anyways that's all I feel like blogging for now!

Back in the city already

Not feeling spectacular this morning.  My guts are upset and its one of those days that I need to stay near a washroom for the first few hours after waking up.  Slept decent last night.

On a positive note my body pain is a little better.  I haven't blogged in a few days so I guess I'll get you caught up.  Since I've last posted my bulged disc has been causing serious pain.  I don't know all the proper anatomical terms, but in "normal people words" what is happening is two of my vertebrae are jamming together and pinching nerves which can cause referral pain in other parts of the body.  I have a L5/S1 protrusion and something going on in L4 too I believe.  Anyways for example I've always had issues in my right big toe.  Sometimes it flares up for no reason like turf toe and becomes weak and stiff. Turns out it was connected to my back the whole time.  Over the last few weeks everything from my waist down gradually tightened up, hamstrings, then calves, it was kind of weird because I have not been training or anything.  Then the outsides of my knees (fibular head more specifically) started hurting.  It made sense because of the tension in my calves, hamstrings, and glutes.  IT bands were steel cables as you could imagine.  I thought most of this was arthritis from my crohn's, which I also have, but now I'm thinking its mostly coming from the spine. (Why I have the disk bulge in the first place I have no idea).

 I spent the last few days at home, hoping to get outside a little bit but honestly ended up spending about 90% of my time on the couch.  I guess my sciatic nerve is being pinched, that's the big one that goes all the way down your leg.  Friday was so bad I lost function of my left hamstring.  It was no longer just painful in certain ranges of motion, but just constantly shooting into my legs.  I couldn't bend or straighten my left leg and the tops of my feet were totally numb.  I finally pulled the trigger and called my physio clinic to start some decompression treatments.  It's pretty hardcore, 2x a day for the whole week.  Kind of a bummer because I was wanting to hang out at home or another week, but I can't do anything with a screwed-up back anyways.  Lauren is still at training camp for a couple more days, and I have this week off from work.  I'm so bored!  I have lots of health/personal stuff to work on I guess, practicing deep breathing and doing physio exercises just isn't all that thrilling. 

I'm sure looking forward to getting my mobility back.  Being home out in the country got me excited for summer.  I'm looking forward to spending time with the family, fishing by the river, hanging out with Penny (our dog) and all of that stuff.  Here is a couple pics from home:

My boat just begging to be taken out! As soon as my back is better I'll clean her up.

And Penny: