Handicap Stall Countdown

It may have seemed strange or rude to see someone such as myself run to the handicap bathroom during our weekend Disney Escapade. However, I do so with good reasons:

3. Space. There is no telling how fast and furious a bowel movement will hit, so the space is important for flailing limbs and the likelihood of tripping over these two feet. Or a crack in the floor.

2. Personal sink. With the unfortunate possibility of disastrous proportions, you need that sink. Need. Now, will they have paper towel or hand dryer…

1. I do it for the people. Hovering over a tiny toilet in between two other equally tiny stalls does not allow decent ventilation for what could potentially be an unpleasant and uncontrollable odor. This baby prefers the corner.

Still, it may come off as unacceptable, however, I am one surgery away from having no colon. Insanely terrified that each time I’m sprinting to the bathroom may be my last.
Maybe I should start carrying medical records with me while continuing to hold out hope this Humira will do wonders…

Curious Colonoscopy

Suppose you can say I have become ‘obsessed’ with looking at colonoscopies.

I never looked at my sigmoidoscopy from the first hospital stay because the nurse had informed me it was ‘brutal’ and ‘pretty nasty’. They couldn’t go very far in fear of rupture.
That was enough information for me at the time.

Now. Now, I want to know more.

I’ve been reading The Angry Gut and, even though the book is quite dated, it is still very informative and detailed. Granted, the details get into medical terminology that is quite unfamiliar, but it is nice to see it laid out on the body’s reaction and the results of chronic inflammation. Looking at my past colonoscopy, I didn’t know exactly what inflammation looked like.
Being the patient, I knew how it felt, but not how to read these pictures. There was some scarring, but that is the only thing I could SEE.

Only half-way through, the author had put in detail what could be discovered during a thorough colonoscopy. Out of curiosity, I had to dig up my pictures and compare to what was described in the book and what Google Images had given me with the safe search off.

So far I have learned:

The scarring is actually referred to as pseudopolyps. Recalling a conversation with my gastroenterologist, he had mentioned the state of inflammation my colon was in concerned him because he feared the scarring would get worse and build out, which overtime, can lead to problems such as bowel obstruction.
When browsing through the photos, there were these small discolored bulges littered throughout and I didn’t notice how many there really were. It is nowhere near as bad as some that are floating around the internet, but wow. Tiny pieces that resemble skin flaps and whitish specs all around the walls in a few of the frames showed me how this looked during a time of REMISSION.

Inflammation looks red and swollen and… smooth?
What I originally believed was these pictures were freeze-frames of where issues were not apparent. It didn’t occur to me that these smooth splotchy characteristics were that of Ulcerative Colitis. I mean, it’s an organ. It’s red. It’s veiny. What else was I to think?

Ugly lesions. The rigidity that was shown in two of the frames I thought were normal… to only learn they are hard lesions that follow along the walls of my colon.

Now, I am not mad at my GI for not going over each part of my colon scrapbook. I am well aware the world does not revolve around me and he sees many other patients. He sees me often to go over how I’m feeling, blood work, medications, etc. I do have an all-around good gastroenterologist in comparison to the one before him.
He encourages questions and loves that I do my own research. When dealing with something so draining that takes such a physical, mental and emotional toll on you, knowledge is so important. Going in completely blinded with trust in a professional can lead to decisions you may not agree with or understand.

Knowing now what my colonoscopy shows when my Ulcerative Colitis isn’t ‘active’, it frightens me to think what my colon looks like during a time of a flare.

This urge to know, the want to know, has shown me how bad this can get.

At least curiosity won’t kill me.

A Lovely Science

“Pathology would remain a lovely science even if there were no therapeutics, just as seismology is a lovely science, though no one knows how to stop earthquakes.”

– H.L. Mencken

Learning a Little More Through Social Media

Today I learned something that I feel will better help me in this journey with chronic illness:

You cannot argue facts with someone who believes everything they read on the internet.

It isn’t worth the time to fight off the negative energy that some of these people radiate. The stress and tension that starts to develop behind each letter that is aggressively typed in starts to effect the gut reaction and that does not typically end well.

This individual doesn’t live with a chronic illness and yet, wishes to pick an argument on the very subject she knows nothing about. She wants to throw judgement out and state that if we live more proper lifestyles, those of us who deal with IBD could be cured.
Cured. With another “miracle diet”.

It angered me. Yes.
I was trying to respond to this person as calmly as I could, even though I just couldn’t believe how disrespectful she was being. Realizing that my words held no real meaning to her and we were going to be moving in circles, I waved my white flag before this became a non-stop argument on someone else’s feed, and wished her well.
Kill them with kindness.

It still bothers me a little. If you are going to approach someone about their life, you shouldn’t throw out inappropriate assumptions. You sound rude, inconsiderate and insensitive.
Especially through social media.
Not only has this mode of communication desensitized us as a whole, but it also has promoted your average barista or cashier into a doctor, psychologist, chemist, dietician, weatherman, and politician. Everyone has a say in what is right or wrong, who is right or wrong, and what you or I should do about it.

Those of us with chronic illnesses are not crying for attention. We want help and support. We are doing the best we know how and should not have to feel like we are constantly defending ourselves. (I know, this sounds familiar.) We are not looking to be criticized and mentally dissected.
Or, pretty much be told this life is our fault.

People are so quick to be nasty and knock others down when they do not understand what they are going through.

We are grown. When we try to share and educate others on what we go through, don’t regress to middle school years. Don’t be a bully.

You cannot teach those who do not wish to learn. And, if you do not wish to learn, you can simply skip over and move to the next post…

Creative Crafts with Harloh

This week has been all over the place and a straight 24 hours of sleep sounds like the ultimate fantasy…

Instead, Harloh helped mommy make it an easy day. She played in her room for most of the morning while I cleaned out her tank and then got some much needed relaxation. It is a little bittersweet how she can entertain herself. She is really into her dolls, make-believe, and Disney right now, and she plays them with real-life scenarios (this week is using the potty haha).

After her nap, we picked up her room and craft time began. Thanks to the Dollar Tree and Hobby Lobby, we have acquired quite the growing collection of craft items.

Harloh hard at work

Finished Product!

Her Aunt Sarah purchased a Princess magazine as part of a Christmas present. The first craft project was a necklace featured in this issue. Harloh chose a pink pipe cleaner to lace her different beads on. When she was done, we shaped it into a heart and used beads to string it on. She was so proud of her pretty princess necklace.

The next project was butterflies to start off Valentine’s 2015.
Heart butterflies.
We used craft sticks and foam heart stickers to create the body. Googly eyes were glued on, then, I cut out wing shapes and sectioned pipe cleaners for the antennas and legs, poked them under the sticky sections of the hearts and covered the back of the wings with another sticker to keep from poking out. Minus the wings and legs, Harloh did everything herself. She even colored with glitter glue ( pretty sure this is her favorite thing to do) and it came out so good.

Mommy’s (l) and Harloh’s (r)

Honestly, I like hers a lot more than mine haha!

Tomorrow holds another round of crafts.
Harloh wants to make princess finger puppets and the first one on her list is Princess Aurora. This is going to be fun because I love watching her put faces together.

Even if they end up a little abstract 🙂

Doctors and Errands

The last two days consisted of errands and doctor appointments, dragging around a toddler from beginning to end. My body and mind are beyond exhausted and this cold that has been developing is a slow torture.

Yesterday, was my follow up with the GI for the short hospital stay a couple of weeks ago. We went over the “game plan” for the upcoming months. Once I FINALLY start the Humira (at least another two weeks, now), he will be needing bloodwork done every month for three months to monitor how my body is responding. Then, I get to partake in another colonoscopy and all its glory, including biopsy.

One of two scenarios can happen:

If my ulcerative colitis is responding well to the new treatment, there is no negative effects to the neighboring organs and my biopsies come back clean, lab work will slow down to every few months.

If my ulcerative colitis is not responding well and my biopsies come back unfavorable, he is thinking surgery.

Needless to say, I’m going to continue crossing my fingers in this matter. The idea of surgery frightens me. I couldn’t even joke back when the doctor tried to make light on having no colon. See, my daughter arrived via cesarean section and even that was difficult for me. If you were to slice a finger open or lose an eye in front of me, I’d be alright. If I slice my finger open or were to lose an eye, I’d probably vomit and pass out.

Today’s doctor appointment was a follow up with my primary. He pretty much  confirmed what was expected. This horrible hacking is nothing more than a cold that needs to run its course. He set me up for the PPD (tuberculosis test) and Hepatitis B bloodwork. The only thing is – it can take up to two weeks to get the results for the Hepatitis B and will not be able to have the PPD done until Monday.

Sigh.

Seeing how my daughter had to put up with all this traveling and in-and-outs, I had to make it worth her wild. We went to the hobby store and Dollar Tree for more craft supplies. She was rewarded with one of her favorite meals -pizza. We even went to the newly renovated library for books. Even this time, I decided to check out what they had for reading material on ulcerative colitis. Granted, what few books were found are a little dated, but they are something.

She was very well behaved for the most part. The best you could ask for from a toddler.

Now, she has drifted off to sleep while I type this from my tablet, drinking hot tea with lemon and honey from this monstrous mug one of my close friends had gifted me for Christmas. Tired and comfortable, I hope to drift off soon…

Goodnight, Friends.

Sunday Fun… Well, It Was Sunday.

*Warning: Slight tangent rant*

Every single time I start to feel better, I do too much.
You would think I learned by now. But, the fact is, I hate feeling like an invalid.

Yesterday, I started with a simple scrambled eggs and bacon breakfast for the family. We ate and got ready for the day, which consisted on going to grandma and grandpa’s house. Seeing how my father is behind on getting his paperwork together and organized, numbers situated and inventory properly accounted for, I told him I would help him set up some sort of organization and spreadsheets until getting an accounting software with the appropriate functions for a small business.

Harloh and I arrived at my parents a little before 10am. I wasn’t going to bring her, however, I knew my parents would be a bit bummed if I didn’t.
Not too long after arriving, things went sideways. Apparently, the man who came and installed my parents’ Verizon claimed that their DVD player was too old to hook up into their new HD Smart TV. (Seriously, I would throw the remote into this television if I owned one. Who really needs Facebook on their television?) Anywho, they are slowly getting into the times of the 21st Century and do not own an HD DVD player, so this man automatically assumed because it wasn’t HD, it wouldn’t work… WRONG. It took me, who has very limited knowledge, to figure this out. Now, I am not saying this man was lazy, but at the same time I am. I know it really isn’t their responsibility to make sure a DVD player is working, however, do not tell my parents incorrect information if you do not really know if it will work.
That is irresponsible as a professional.

Then, my father and I decided to go to Wal-Mart to purchase some ledger paper to start the bookkeeping process and breakdown of the months. This became an adventure.
Wal-Mart had a very small selection, which was not very surprising. While there we each picked up a couple of items that were needed for our own personal use and headed to the next interstate exit for Office Depot.
While there, I decided to check out the accounting software. Holy. Priceness. It’s astounding how much they charge for these programs, especially when you have a very small business that is steadily growing. To my surprise, my father actually asked someone for assistance to go over the programs and let me do most of the talking (not to sound ridiculous, but numbers are my thing) and the sales associate pretty much told him the same thing I have been trying to tell him for almost two months: Excel. I do not fault him, though, because he has always been stubborn and he is not too familiar with many programs. However, I have quite the background with numerous softwares and Excel itself, so….
The point is, surprisingly, he purchased it!

Now, when we get back to the house, it is already about 12:30pm and we have not accomplished really anything. At all.
To make me feel old and completely out-of-touch with the way things work now, the basic disc was not supplied. It was a card with a product key to download and install. The instructions said it would automatically update and show up in the system, however, after a few minutes, the only way I could use the program was online! What is going on?! A simple install became a nuisance because nowhere does/did it say that you had to restart the computer. No-Stinking-Where. It was a bit of a blow to my confidence because I know the disc versions you always had to, but here it made it seem as if it was supposed to magically pop up on the desktop.
Sigh.

So, we finally have it on the desktop, free of being online, and I start to layout the spreadsheet and go over with him on how I am going to initially organize these.
All the way back from March. MARCH. I didn’t realize it went that far back.
It got to the point that I decided to just take it all home. I know my father. He will just get frustrated because he is hasn’t been out of the two-digit typing stage long and he squints at the computer, even with glasses on – I cannot help but laugh at him for this. It is pretty funny.

We didn’t get home until about 5:30pm. My whole day did not go as planned and throughout I had this persistent cough. I felt wore out and dragged through the mud. Exhausted.
After a quick and unhealthy meal (ugh), Harloh got a bath and I continued to work on the spreadsheet.
We hung out, did some ABC Mouse and story time. Fed the fishies.

Francis put in Boyhood and it was so good. During the movie I was still able to work on the spreadsheets…
The movie ran longer than expected (guess we should have looked at the minutes) and didn’t fall asleep until sometime after midnight…. There was just no blog posting yesterday.

Ugh. Not to sound like a party-pooper, but if you made it this far in my long-winded post – I’m now feeling worse than yesterday. This cough is now producing phlegm that seems to be clear and my throat is on fire.
My voice is cracking…

And, I have a lot to do the next few days in the world of doctor appointments and errands.

Yay, Immunosuppresants!

Happy Monday!

“Mommy, You See This…”

“I paint it for you!”

A few days before going to the hospital, I mustered the strength to set my daughter’s easel and paints up. She was pretty thrilled because she hadn’t used it for painting yet, and she did get some nice new paintbrushes.

I love watching her create. She gets so into it. Ever since she first picked up a crayon.

Every brush stroke is thought out. She experiments with techniques and colors.

She smiles, laughs, and even talks to herself. It makes me so happy.

My Harloh.

My favorite little artist.

Tonight Was the Night!

We finally had our first Crohn’s and Colitis support group meeting at the local library this evening and am ever so thankful I went. I even brushed my hair for the first time in weeks.

Due to dinner for the tiny family and a spacey wrong turn (I’ve only been here a gazillion times now) I was a wee bit late. It didn’t help that after pulling in, I sat there in the dimly lit parking lot taking some deep breaths to calm the nerves that were making me a little shaky.

Being nervous probably seems silly, but I’ve never attended anything like this. In fact, since my diagnosis, there wasn’t one set in stone. Questions circled – “How many people are going to be there?”, “Is there going to be anyone around my age?”, “What will we discuss?” were just a few…

Well, it was small, yes there was, and we all got to know each other. They were such a nice group of varying ages with similar, yet different, experiences and diagnoses. People that truly understand what your life is like.

To meet someone around the same age as me was such a nice bonus. We are both equally excited about this and have exchanged numbers and are now friends via social media. This works since it is going to be a month until our next meeting.

My newfound friend had also shared with the group of this petition that needs signing. Stat.

Add Crohn’s Disease & Ulcerative Colitis to its Compassionate Allowance List

Please, sign this and spread this around. Share the link and your love.

Good Night, Friends.

Please Don’t Say…

It seems lately that I may be coming off a little strong in my refusals to accept advice that was never asked for in regards to my Ulcerative Colitis. I do not share this personal battle for pity or sympathy, but merely to keep friends and family in the know about what my experience has been like. Why I cannot attend most gatherings or forget to phone in and reply to messages. To keep from feeling like I’m fighting a constant battle to get people to listen to me without interruptions or feel like I have to justify any “excuses” I may have.

So, as a means to simultaneously inform and request, please refrain from:

Must be nice to take naps.
Not really. There is nothing fun about having absolutely zero energy and a lot of fatigue. So bad, that after waking up you cannot wait for nap time to rest up. There is nothing nice about having an erratic, almost insomniac-like sleep pattern that comes and goes. 
We are not lazy, we are out of our mind exhausted.

You should try the __________ diet.
I should?
Food is probably the most consistently inconsistent issue for us. Our ‘diet’ constantly changes because our bodies’ reactions are constantly different. Although some foods could suddenly trigger a flare or severe irritation, there is no evidence food caused the IBD in the first place. Diet is not going to make our IBD go away. In fact, there are more things we cannot eat than you may realize.
Just like medication, it is all trial and error. 

Are you taking your medicine?
Speaking of medication…
Just because I am having a flare, it doesn’t mean I willingly tossed aside my prescriptions to allow myself complete discomfort and pain. We do not have to be without medication for our bodies to wreak havoc on themselves. Sadly, there is no guarantees. Which is why a lot of us move up the prescription ladder with the scarier and harder to get approved for drugs. Unless the doctor or a nurse says otherwise, I keep taking them…
I suppose this is the second most consistently inconsistent issue that will not make our IBD go away.

You look pretty good for someone who is sick.
-or- You don’t look sick.
Thank you…? Is there now doubt because I bathed and embraced the public for a few hours? Have you never ran errands or tried to leave your four walls when you have a cold or are just getting over the flu?
Even on a seemingly good day, there’s no telling what our insides are doing.

Well, if you came out more…
This cuts a little deep. Doing the basic everyday household chores can be taxing on our bodies at times. Hell, having a phone conversation can be energy reducing. Typing this can get tiring. [a nap interrupted this post] 
Also, for many of us on a multitude of drugs and immunosuppressants, we run the risk of other ailments such as: sinus infections, upper respiratory infections, severe colds, the flu or flu-like viruses, especially during the winter months. And, I don’t know for all, but I do know for myself that some of these infections and viruses stick around for weeks. There are good days, bad days, and worst days. Quite often, if I get out one full day it puts me out of commission for almost a week or longer.
To put it ever so simply – My body is not able to do what it used to.

I have the same thing you do, but mine went away and never came back.
Then, you did not have the same thing I do. It doesn’t just go away.
This is a chronic illness.

I thoroughly appreciate understanding and kind words, caring questions, informative articles and gut-friendly recipes.

This is not meant to be abrasive or mean or insensitive. It gets mentally and emotionally tiresome to repeat myself. I’m also noticing it comes off as if I am not trying to take care of myself which couldn’t be farther from the truth.
I love all my family and friends for all their support over the last few years. But, please, don’t tell me what you feel I should be doing to keep myself out of the hospital.
It just doesn’t work that way.

xoxo