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!
Tuesday, 15 July 2014
Monday, 7 July 2014
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!
"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!
Sunday, 6 July 2014
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!!
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!!
Wednesday, 2 July 2014
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!
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:
Friday, 27 June 2014
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!
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!
Thursday, 26 June 2014
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.
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.
Tuesday, 17 June 2014
My simple solution for those who don't have time to exercise:
Step 1) Keep track of all the time you spend looking at a screen in one day. This includes your phone, television, tablet, or computer. Obviously if you work at a computer that time doesn't apply. But this does include whipping out your phone just to look at it or text. Record your daily total.
Step 2) Repeat this every day for one week. Record all of it!
Step 3) Add up your weekly total.
Step 4) Look at it and decide if you really have time or not.
Step 2) Repeat this every day for one week. Record all of it!
Step 3) Add up your weekly total.
Step 4) Look at it and decide if you really have time or not.
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