One Gutsy Broad (and her life with IBD).: HAWMC

Showing posts with label HAWMC. Show all posts

Wednesday, May 1, 2013

WEGO health Writing day #30- I slacked big time. A day late....

Yesterday's prompt--- Today, write a recap of your experience. What was your favorite prompt? Least favorite? What have you learned? Or describe your HAWMC experience in one word!

I tried. I really did. Between starting back to work, school homework, kids etc... I can't believe I managed to do 14 out of 30. I think that's a pretty good average.
Some days I knew what I wanted to write but didn't have the time, or the energy to get it done. Some days I just plain forgot I had it going on.
I like Day 7, 9 and 19.
Here are the links to them.....

http://gutsylisa.blogspot.com/2013/04/day-7-wego-writers-challenge.html?zx=aa8d516472424431

http://gutsylisa.blogspot.com/2013/04/wego-health-writers-challenge-day-9.html

http://gutsylisa.blogspot.com/2013/04/wego-day-19-vintage-lisa-throwback-pic.html

I've been really realizing the last few weeks how much impact my daily symptoms have on my life. I've been struggling with spasms STILL. The Flexeril and Valium barely keep them limited enough so I can function but I have had some days recently that a double dose didn't help. I went back to work and from day #1 my body is retaliating. Pain. Spasms. I can smile and fake it through most of my pain and discomfort now. I've had lots of practice.
Today I feel worn out. Just completely run down. It's a flashback feeling I don't like at all. I could just lay in bed all day. I'm working 5-10pm today so something has to give or it'll be a long rough night.
The frustration of feeling like I'm at the mercy of my stupid body that won't get it's act together is indescribable. I HATE it. The broken sleep is killing me. Being awake from 3-430 in the morning KILLS me. It's nightly. I'm tired(ha!) of it. My brain wants to wake up and go for a run. My body wants to stay in the fetal position in PJs all day long. I'm upset. I'm pissed. I'm annoyed. I'm fed up. I went for an MRI yesterday to see if there is anything the inconclusive $700 CT scan missed. For $700 it should have come to clean my bathrooms too. So now we wait. I should have results by tomorrow. I'm losing blood. Daily. It's not much but ANY puts me in panic mode. I definitely haven't hit anemic mode or anything because I know that feeling all too well. I can function like it ain't no thang at a 7 hemoglobin when normal is around 14. Sick girl. Ugh.
Also the self esteem is at an all time rock bottom low lately. I hate what I see. Oddly, my scars are the last thing I'm dissatisfied with!! it's everything else. I'm just weak. And look like shit. I'm tired. I'm out of shape. I feel like I've aged 10 years in the last 4. Chronic pain and illness will do that I suppose.
Anyway, enough of my sobbing.
Have a good day everyone. My semester is winding down. Having a mental battle about what to do about school. On the fence about continuing. I need a nap. Or a drink. Whatever.

Tuesday, April 23, 2013

WEGO writing challenge day#23- hasta luego, social media.

Today's prompt--
Write about how your life would change if there was no social media.

Well, firstly I would no longer be able to play word games with high school friends who live across the country that I haven't seen in 18 years. That would lead to me having a lot more free time. Although, they say word games, crosswords etc... keep the mind active, and young and can prevent dementia in later years. So, I like to think of the time I put in to Words with Friends and Scramble with Friends as preventative measures against mental health decline. I am trying not to lose my marbles. Candy Crush is it's own thing and I refuse to contemplate what it does to my brain.
Without social media I would not have such an awesome network of IBDers that I know understand my deal. I'd be missing out on connections with old friends that I lost contact with. I may not be married to my husband.
I love my blog outlet. I love writing it, even though I do tend to slack from time to time. If there was no blogging or tweeting I'd be missing out on other people's stories and may be feeling much more isolated with everything I have gone through.
I like connecting with people who I would never know, and yet there they are, like friends I've always had. For as much bullshit that is on the internet there are so many more positives. Effortless connections are wonderful.

Thursday, April 18, 2013

WEGO writing challenge Day #17. Word Cloud from my Blog.

I know it's been a bit. Life got in my way..feeling like crap, pain, trying to study, starting a new job! I just couldn't get in time for blogging. Anyway, I'm back!

Wordless Wednesday
Go to http://hub.am/17EReet to create a word cloud or tree from a list of words associated with your condition, blog, or interests. Post it!

Here it is----> IBD is a big part. So is love and people and a lot of other things. =)

Thursday, April 11, 2013

WEGO challenge Day #11 -- social media, what, who, when, wow!

Today's prompt.

Write about your favorite social network. Do you love Twitter? Facebook? Pinterest? Why?

I love the internet. I can not imagine what life would have been like in High School or college(the first time) with the 24/7 connection to the world.

Those who know me, know I love them all. Facebook can be oh so annoying, but the positives of what I have gotten from it, make me hang in there. I have reconnected with people who I lost touch with. I get to see where their lives have gone, see their beautiful kids, faces that bring back great memories, and it's effortless to connect and share pics and info with many people at once. Plus, I have a built in IBD network of so many wonderful people that I have never met, and may never meet, who get it and understand and have been in my shoes and me in their's. My facebook IBD groups made me feel less scared and isolated and singular. It allowed me to own my struggle with IBD. It's brilliant!

I also love Twitter. I love getting all my news headlines, traffic issues, funny tidbits, my IBD community exchanges blurbs about their shitty days or their successes. I love the simplicity of the retweet. I love seeing the randomness that celebrities come up with on their accounts.

On my old macbook. I'm sure my smartphone was with me too.

I'm much newer to Pinterest but I do enjoy it. It is unreal the ideas and recipes and home decor and outfits and picture scenarios can be in one place. It really seems endless and could take up an entire day. I like that everything is on it's own little boards and it becomes it's own little way of passing ideas and stories.

I use all three to share my blog and share my journey and pass along details and stories of people that I admire or connect with and feel others should read about.

I love it. I love that you can find out virtually anything in a matter of seconds. I love video chatting and think there should be more of that. I remember dial up with a phone cord stretched into the spare room of my parents house. I remember when AOL disks came in the mail every other day. Amazing how much has changed. I still write thank you cards though. You know, the ones you put a stamp on and mail?! =)

On my old macbook. I'm sure my smartphone was with me too.

Wednesday, April 10, 2013

WEGO Writing challenge Day #10. --- Picture Perfect.

Here's the prompt---->

HAWMC Day 10: Wordless Wednesday!

It’s often hard to like pictures of ourselves – post your favorite picture of yourself.

I rarely like a picture of myself, especially since getting sick. My hair is different, my face looks different, my body composition is different, all the weight fluctuations have created a skewed body image in my head. It sucks. Every once in a while I'll see a picture taken that reminds me of the 'old' me and where I think, "Ok, I look pretty good!". I don't know. My hair had grown in a bit and I had a good cut, most of my fat prednisone face was gone, my eyelashes look nice and it was date night! It's few and far between. Anyway, here's one from a while ago I really like.....

HAHAHAHAHAH-- JUST KIDDING!!!! I do love leopard print shoes though. Ok, here it is for real! ;-)

Tuesday, April 9, 2013

WEGO Health writers challenge Day #9-- parenting while sick.

Here is today's prompt. I know, I'm totally late--->

HAWMC Day 9:

As a parent with health conditions or parent to a child(ren) with health conditions, what do you hope you’re doing right?

The hardest thing about being sick wasn't the pain. It wasn't losing a job I loved. It wasn't the meds that made me ugly and crazy. It wasn't the hospitalizations. It was how many times I had to tell my daughter, "No". Her PreK, Kinder and 1st grade was consumed with a mom who was always in bed, in pain, in the bathroom, half asleep, on pain meds, in the hospital, at the doctor.... the list goes on. I stopped making promises because I couldn't keep them. I knew if I said we would go to the park tomorrow, chances were that I would in no way be able to handle that. Seeing disappointment on her face so many times killed me. She hated when I was in the hospital. I don't know how much it freaked her out. I know she hated seeing all my IVs and the PICC line and she saw at least one blood transfusion. It was very, very difficult to explain. After my surgery she became more curious as I got better. She would ask to see my stoma. It didn't gross her out. She asked if she would have to get her large intestines taken out. Again, I didn't want to give a false promise so I just said that I hoped not. She told her teacher last year that her Mommy got her large intestines taken out. Her teacher didn't believe her. I'm not sure where she thought a 7 year old would come up with that on her own!! Things are better now. I felt guilty for not being fully present for so long. I felt guilty of the days I was missing. I hated UC for making me unable to be involved with my child.

Family visits in the big H.

What I hope I did and continue to do right, is just be honest. I never lied about how I felt or what I was going through. She knew my pain. She knew my wounds. Saw my hair fall out. Saw me stapled shut. I always try to be as honest as it is appropriate for her age. I think it makes her understand and not be resentful. If I had hid it, she wouldn't have really 'gotten' it and then possibly would have just resented that I never wanted to play with her.
I hope anyway. I know having surgery gave me my life back. If I lay in bed now, it's a choice, not a necessity. Things have improved. My daughter hasn't forgotten. She's happy I'm better and can be more involved and I think I've disolved any leftover fears she might have had. I hope.

Family visits in the big H.

Monday, April 8, 2013

WEGO Health writer's challenge Day #8--- Tigress

Here is WEGO's prompt for Day #8--->
If your health condition (or the health condition of a loved one!) was an animal, what would it be? Is it a real animal or make believe?

This one is a tough one. The days that are symptom free are few and far between. Almost nonexistent.
For the most part, having UC has sucked big time. I'm going to have to say my UC was/is a Tiger.

Meow- good kitty.

Sometimes Tigers just lay around all lazy soaking up some sun, doing a whole lot of nothing. And then out of no where it can attack quickly reaching up to 40mph to catch it's prey which it proceeds to strangle by locking it's jaws around it until it dies. I definitely felt UC strangling the life out of me. Out of nowhere. One minute I was just chilling, having some water and -BAM- Tiger ambush is complete. Then it proceeded to tear me apart. Being sick was always two extremes for me. The half asleep lazy sunbather and the wild attacking killer. No in between. Even now with my JPouch I have days it feels like I was never sick and then the next day I can feel horrible and there aren't enough muscle relaxers in the world that can help me.

Thursday, April 4, 2013

Day #4 WEGO writing challenge.

Today’s Prompt:

Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self-advocacy!

I know when I first started having symptoms WebMD became my life line. By the time I got diagnosed I had narrowed it down to Crohn's or UC. I went into my post colonoscopy prepared to be told it was one or the other. It made the news less damaging. When the GI said, "Left sided colitis", it was no surprise. I even knew a lot about the meds that were possibilities and when he put me on Asacol, I had already read about it.

Being familiar with the words, and the terms didn't make me any more prepared for the LIFE. I felt very isolated and only told a few about my diagnosis. I needed to just carry on. If I told people, they may treat me differently and then it would impact my life. I wasn't ready for that. It really wasn't until my first hospitalization that I finally became more realistic that, UC was a big part of my life. I was sick. I had a DISEASE!!!! Me! A disease. It's hard to wrap your brain around. Once I was hospitalized, it woke me up that life was now different. I was different. In little ways I started to feel alone and defective. I started looking online and through Facebook for groups. I needed a connection with people who understood. I needed that community. What I found was some really great people. Being (pseudo) surrounded by others who are experiencing what you are is empowering. I stopped feeling defective and became stronger in my ability to discuss my issues. I went from thinking no one would understand to knowing there were thousands of people going through what I was and it allowed me to do something about the people I thought wouldn't understand. IBD is a difficult thing to just throw into conversation. In school today it happened. I had said that at one point I had needed 4 units of blood because I had lost so much during my flare, and a person asked, "Well how did you lose it". That's when you get to tell them that you shit blood. There's really no way to pretty that up. My number two's were always bloody? No, that doesn't dial in on the fact that blood literally POURS OUT OF YOU. Like holy shit, I'm going to bleed to death right now on the crapper. Yeah, so IBD is hard to put delicately and many people don't want to hear that. It makes it real. The reality can suck.

So here is my list of FAN-FREAKING-TASTIC sites that are empowering and educating and supportive and welcoming and helped me to move forward to tell my story whenever I got the chance. Which is often! =) I hope it helps you cope and learn you have power in your story, or maybe you will pass them on to someone you know who just got diagnosed. Or maybe you are just curious. Either way.... check them out! Thanks for reading!

Crohn's and Colitis Foundation of America

http://www.healingwell.com/

http://www.inflamed-and-untamed.com/

You and IBD

Girls with Guts

The Great Bowel Movement

Intense Intestines

Today’s Prompt:

Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self-advocacy!

Crohn's and Colitis Foundation of America

http://www.healingwell.com/

http://www.inflamed-and-untamed.com/

You and IBD

Girls with Guts

The Great Bowel Movement

Intense Intestines

Wednesday, April 3, 2013

My lips are Sealed. Day#3

Ciao!! Today's writing challenge is anything but. Here it is from WEGO.

---->>> It's Day 3 everyone, and it's our first "Wordless Wednesday"!

Post a picture that symbolizes your condition and your experiences.

I can not pick one picture to symbolize what my struggle has been as there have been many different ups and downs and phases. So I picked three that I felt had good visual impact for the varying degrees of status! Enjoy...

Smiling through excruciating pain. That was all I could do to cope with it all.

Embracing my ostomy. I didn't slow my life down after my colectomy. Instead, it was very much the opposite.

Miss Semi-colon. Doing things confidently I haven't been able to do in years. Things 'normal' people take for granted. A 15 minute car ride for instance. That can be scary when you have no control over your malfunctioning and diseased colon.

Tuesday, April 2, 2013

Day #2- Hello, my name is Lisa and I had UC. I upgraded to a JPouch! #HAWMC

Hey there, hi there. I am an IBD warrior. A UC survivor. I kicked my colon's ass. So to speak.
UC is Ulcerative Colitis and is an Inflammatory Bowel Disease. And it is horrible. Another IBD is Crohn's which tends to be more recognizable, although different. Crohn's affects the ENTIRE digestive tract, mouth to anus, while UC is strictly in the colon. They are 'invisible' diseases where you are lucky enough to have people say, "You don't look sick". If you had xray vision you'd know the truth. UC flares consist of your colon being inflamed and covered in bleeding ulcers. Have you had a canker sore(I used to get mouth fulls of them)? They are pretty painful right? Water can hurt. Now imagine the organ that absorbs your water, and your salt and your electrolytes being covered with those nasty things. Now imagine all your food scraping past them. Pain with a capital P!! There are different levels of UC. I had pancolitis which means my entire colon was affected. In turn, my entire life was affected. Everyone connects diseases like this with diarrhea which seems like no big deal. I want people to know it's 20-30 times daily, plus blood loss, plus pain, throw in some arthritis and then the inability to properly absorb water and salt and electrolytes, it becomes a huge deal. Having some diarrhea doesn't require blood transfusions, immune system suppressing drugs, steroids, hospitalizations, invasive testing, and living on narcotics to get through your day. I feel like to truly educate people about IBD we must be a little gross and graphic because they are not diseases that are as highly broadcast as others. Sure diarrhea is a big part of them, but I'm sure most IBDers would agree with me when I say it is SO much MORE than that. I think most of focus, and what I want is to educate others in the most broad manner possible about IBD. Many times when I am speaking about it, I have to backtrack and make sure people truly know what your colon(large intestine) does in order for them to understand why a diseased one is big trouble. Many don't understand autoimmune either. I can't count how many times I have said, "I have Ulcerative Colitis". What's that, they say. "It's an autoimmune disease", I reply. "Oh, like AIDS"? <SIGH>

I have included some past posts from my blog that I thought had some great insights and a pretty solid view of a portion of what I've been through. They are in order but keep in mind there were posts in between so to get the full enchilada you need to check all of them out.

http://gutsylisa.blogspot.com/2012/06/we-all-have-our-anchors-that-hold-us.html

http://gutsylisa.blogspot.com/2012/10/1-week-down-now-what.html

http://gutsylisa.blogspot.com/2012/11/what-difference-year-makes.html

http://gutsylisa.blogspot.com/2012/11/lucky-me.html

I hope you like them. I hope you learn something. I hope it helps you be a bit more understanding if you happen to know someone struggling with an IBD.
Thanks for reading. XO

Monday, April 1, 2013

Health Activist Writer's challenge #1- Writing about UC

Hello out there everyone. This is my first attempt at participating in the #HAWMC! I am going to give it my best shot despite being busy with school and kids yadda yadda yadda....
I am not a newbie to WEGO health. My blog was so awesomely nominated as Rookie of the Year for 2012. WEGO is a great community of people who write about health issues.
I know with me I had wanted to start my blog when I first got sick but just didn't have it in me. I was lucky to be barely functioning as a mom while constantly being in a UC flare. Somehow I was dragging my diseased ass to work 40 hours and trying my damnedest to lead a normal life. Hello! Crazy person!! I shouldn't have been driving half the days I did. I was so weak and light headed. Anemic constantly. Malnourished constantly. I should have had a chauffer. So needless to say I was not up to adding one more thing on my plate by blogging. Once I was scheduled for surgery last year I realized even more how I wish I had chronicled my journey. I had already forgotten details. I mixed up what happened in which hospitalization(like it really matters!) and I wish I had more pictures of what the disease had done to me physically. Hubs refers to me at my worst as Skeletor. Those of you old enough to remember He-Man know what I'm talking about. I have some random pics here and there but I kick myself for not documenting my journey on a bigger scale.
So in early 2012, with my surgery scheduled for May, I figured I would start so that way I could at least tell my story of surgery and recovery. I know a lot of people are so afraid of surgery they'd rather suffer for years and have their body destroyed by meds, so I wanted to make it real. I knew there would be dreadful days, but I also knew there would be many victories. I had the mindset that I would kick some ass in recovery and wanted to put a happy ending of sorts out into the IBD community. I wanted to write about how my health and surgery and recovery impacted my life, good and bad. So that's where I am today. I am closing in on having my blog one year and in that time have had almost 7,500 visitors to my little page. That is amazing to me since for the most part my blog was a little bit of therapy so to be that well received is a bonus.

Worst IV location EVER!!

I'm glad I did it. My story isn't the prettiest, my pictures are kinda gross and shocking, but I don't plan on stopping. I know my story is helping someone out there and I love it.
Until tomorrow, everyone!! Have a great night. XO