Rigors

This past week has been long and tough. I had been feeling not too bad prior but then last Monday night/Tuesday morning, things just went the opposite direction quickly.
I wanted to show how, with Crohn's, when I say one minute you may be fine and the next you could be in hospital.
Monday was the same as any other, nothing out of the ordinary, other than starting to feel worn down because my Remicade (mouse juice) was coming up on Wednesday. That was until the middle of Monday night. Around 2am I got up to go to the bathroom, again not unusual, and got back into bed and under the covers as I started to feel chilly. I wish I was just feeling cold.
I started to get the shakes and shivers, as one does when you get chilly, but after a good few minutes I knew it was the start of rigors. I don't get them that often but when I first got them, I had no idea what was happening and it scared the hell out of me. The first couple of times, I called the ambulance because it was so severe, my jaw was clenched to the point of becoming locked. The doctors at the hospital had no idea what was happening to me.
For those that don't know what rigors is, simply, its uncontrolled shaking and tensing of all your muscles. I try to calm them down by deep breathing, but it only helps for a few seconds. I even would cover myself with every single blanket in my house. Once I had my son take everything out of the dryer and dump it on me...no help.
It's the most helpless feeling. I want to stop, but can't.
This past attack lasted about 2 hours and, like always, after I threw up, the shaking started to slow and then eventually...just...stop. Then the aches, pains and headaches start. I also run a slight temperature and high heart rate. As you can imagine, after two hours of non stop shaking and clenching, one would ache all over. I feel it in my joints, especially my knees, and all my muscles. My head just pounds for hours and sometimes days. What lasts for hours, takes days to recover.
I was worried this time because my infusion was the next day and I was still running a slight temperature of 37.8C, but my IV nurse said it was still okay. She was more worried about my 115 heart rate. But by the time the infusion was done, it was down to 102, still high, but on its way down. Goes to show how long it takes to recover from a rigors attack.
For me, I no longer go to hospital and ride it out at home because I know that after a few hours, I'm going to throw up and it'll be over. Why it happens? Beats me. I know that Crohn's is a factor and I have an on going abscess, which also is a factor. I figure its another way my body of fighting off some sort of infection. This is my experience with rigors, yours might be different. I've had probably around 10 -20 attacks in 30 years. Always check with your doctor on what you should do.
Hey, if after all these years my body is still fighting... I'll take it.

You Might Be A Crohnie...

If you have become an expert on looking WELL
....you might be a Crohnie

Crohnie Quote of the Day

Being "tired" does not necessarily mean I didn't get enough sleep, it could mean that my body is "tired", which means I'm fatigued or worn out. As if I just ran a marathon.


...but it could mean I didn't get enough sleep as well.

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You Might Be A Crohnie...

If you can never go "commando" again....ever
...you might be a Crohnie

Normality

What does it mean to be "normal"?

Everyone's idea of normal is different, especially when it comes to health. Who's to say how the word 'normal' is defined. Maybe those that write the definition aren't 'normal' themselves.
The Webster dictionary defines 'normal' (as an adjective) as:

conforming to a type, standard, or regular pattern

and as a noun as:

a form or state regarded as the norm

What might be normal for some, would be considered abnormal for others, so how can it be defined?
So if that's the case, then.... there is no "normal".

When I go for my infusions every 6 weeks, the nurse asks me how I've been feeling, how often I go to the bathroom, if I've been to Emergency, etc. and I always answer the same way, "everything is normal, for me".

Every 12 weeks I get blood work done and I view my results online the next day. The results fluctuate a little here and there, but that's 'normal', for me. Sometimes I have a couple of low counts, but again, that's 'normal', for me.

What irks me the most is when I'm in hospital during a flare, or kidney stones, or abscesses, or fistula's, or dehydration, or, or.... and the doctor comes back to me with test results as 'normal'. I'm anything BUT. I'm not sure what they are comparing the results with, because if I'm in the hospital, I'm there for a reason (as I'm a procrastinator) and not 'normal', even for me.

I think there needs to be a redefining of the word 'normal'.

Maybe me and my condition are 'normal' and everyone else is 'abnormal'.....

You Might Be A Crohnie...

If you turn on the radio at work to help drown out the noises coming from your abdomen
...you might be a Crohnie
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Getting Out, Crohnie Style

Growing up I never considered myself a "social butterfly"
Don't get me wrong, I had friends and spent alot of time with them (keep in mind, this was before internet and social media, so we actually went over to other peoples houses, parks, etc) Highschool was the same. You had your friends and you stayed in your clicks, but you all "knew" each other.
After highschool, most went their separate ways, some stayed in touch, others faded away only to reconnect later with Facebook, Instagram, Twitter, etc.
I was diagnosed less than two years out of highschool and immediately lost my girlfriend of 3 years, after my first surgery, because she couldn't handle my illness. You find out real quick who your friends are, through no fault your own.  I don't blame those who faded away but I know I personally wouldnt leave a friend when they are needed the most.  Again, I dont blame anyone because everyone handles things differently.
Crohn's made me a virtual shut in. In a matter of months, I dropped from a healthy athletic 170lbs, to skin and bone 115lbs. Once it took the fat in my body, it ate away at my muscle, I looked anorexic. At one point, asked by a complete stranger if I had AIDS. After that day, I didnt want to go out, I didnt want to be seen. Steroids made me gain weight, but not much. I couldnt maintain weight because the nutrients from food went right through me.
Fast forward to 6 years ago. Remicade changed everything when it came to living with Crohn's.  I started to gain REAL weight and maintain it, but I still didnt feel secure enough to go out.  I go out with my family to enjoy my wife and boys but not far from home. I still feel very insecure.
This week, there was a get together of my highschool friends, some of which I went to elementary school with, and that insecurity kicked in. I'm on social media and put it out there when it comes to my illness but that's to help me and to help others like me. I didn't know if some of these highschool friends knew anything about how my life has been, and is. I knew some did, but not sure how many. Two people we knew in school passed away recently and kind of put things into perspective. If I went, the whole thought of having to explain why I cant stay, or why I cant eat or drink brought a lot of anxiety and stress. I was still debating whether to go or not up until about half an hour before I was to leave. The 15 minute drive to the restaurant was a drive with my heart beating hard and butterflies in my stomach. I sat in the parking lot for at least 10 minutes before getting the courage to go inside. I literally took a deep breathe, grabbed my phone and wallet and said out loud, "fuck it, let's do this".
Four hours later, 100's of memories, lot's of laughs and tears (from laughing).... I'm glad I went.
Basically everyone knew about my condition, no judgement, no pushing me to have a drink or food and some knew others with Crohn's. It will be great to see everyone again one day.
What did I take from this? Life's too short to keep worrying about things I cannot change. I've been told this by many people, many times, including my wife but I think it took the passing of two people my own age, by no fault of their own, to put things into perspective.
So, even though I may never be 100%...ever... through the pain and fatigue, you just have to say,

"fuck it, let's do this"

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Remicade : Day 2213

6 years, 22 days since I started Remicade. It's done wonders for controlling most of my Crohn's symptoms, but not all.  I don't think it will ever be able to. I still have an ongoing issue with fistula and abscess, but then there's the underlying problems secondary to Crohn's like chronic fatigue, kidney stones and psoriasis.
But I still go faithfully every 6 weeks to get "the juice", I guess you can call me an IV drug user, so to speak, because the alternative is not something I want to go back to.
The 24 years prior to Remicade were filled with pain, surgeries, weight loss, depression, probing, worry, loss of friends, anxiety, etc. I don't want to go back there. And because I've been there, I know what the newly diagnosed are feeling.  All I can say is, with the advancements every day for the treatment of Crohn's and Colitis, you have better chances at getting thru it.
Hopefully they will discover the cause so we can have closure.

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Missing a Family Trip......again

One thing I've learned after over 30 years of having Crohn's, plans are never "confirmed". Take this past week for instance. A few weeks ago we planned a small trip for 3 of 4 days to visit some family and take in the sites.  A "stay-cation" so to speak. We had planned to leave on Tuesday evening and had reserved our spot on the ferry and everything was on track for that to happen. I came home from work and was waiting for her while getting everything ready to load up the car.  We were about 30 minutes or so from heading out when I had the sudden feeling I needed to go to the bathroom and then like I was going to be sick. There's no weirder feeling then sitting on the toilet and needing to be sick. Right away I knew I had a blockage. So immediately I started to think, "what the hell did I eat today that would have caused this?" Then the pain started right under my rib cage and that confirmed it for me, plus the fact even though I had the urge to go to the bathroom, nothing was coming out.
Now came the dilemma. Do I still go on the trip and run the risk of more happening? Talked with my wife and we decided that I would stay behind and meet up with them the next day or two because I really wanted to go, but at the same time don't want to take any chances.
By the next day though, I had been sick, in pain, stopped eating, couldn't go to the bathroom, didn't sleep and now my peri anal abscess got bigger. Needless to say, I didn't go the next day either....or the next.....or the next. I got alot of rest though, but its not the same as spending time with the family.
It didn't start getting better completely until Friday and by then it was too late as they were coming back Saturday.  I hate missing out on family outings. What I hate the MOST is the unpredictability of Crohn's.
Never did figure out what I ate to cause a block, but when I really thought about it, I might not have done anything.  I could have just had a flare which caused some inflammation leading to a block.  You just never know with this disease. It's like, Crohn's is inside me with some buddies of his (or her), sitting around chit chatting, when Crohn's gets up and says "watch this...."  And 'boom' I'm down.
But, not out.

You Might Be A Crohnie...

If your "skinny jeans" hang like you can fit another another person in them with you
...you might be a Crohnie