The other shoe dropped (almost)

Know how in my last post I was talking about worrying about something happening? Well something did... This past Tuesday (9/2) I had an appointment with my GI Dr. O'Hare so I figured I should change my bag before heading there. Good thing I did! I discovered an ulcer looking thing and I started to panic I admit. I started looking up stuff and even posted a picture of it on all my "ostomy" groups. I NEVER do that, but that's how worried I was. It just didn't look right. Flash forward to my doctor appointment, Dr. O'Hare said it could possibly be a fistula though he said that was at the bottom of his list and felt it was a peristomal ulcer. Just said to treat it as such and that if it's not better in 6 weeks then we look into further.

Ok, I LOVE that doctor but I left the office that day a bit discouraged. I've dealt with infection after infection since August 2012, they don't really phase me now but I DO know what to look for. Not wanting to think the worse I came home and looked up everything to do for an ulcer. Decided that changing my bag daily would probably be best so I could keep an eye on it. So Wednesday (9/3)  night as I was changing the bag I noticed that the "ulcer" seemed deeper and redder. There was a white substance leaking from it and that is when I knew it was definitely infected. Been down that road before!

I already had an appointment with my primary doctor on Friday so I figured why not have her check it out? I've been going to her since '97 and she knows all there is to know about my health issues. Getting to Friday was no easy task, the "ulcer" was burning and hurt horribly. Finally it was time to go see my doctor and I told her everything that was going on. She asked to look at it and I had already planned on just changing it there in her office. She took a culture of it and said it was infected. Wrote me a script for Doxycycline. I dislike that anti biotic VERY much. I was on it all summer :( It's the only one that will work for me though without having to get a PICC line. She told me to contact my infection doctor and see what she wanted to do. Didn't I just get released from her care finally?!!?! Yes! So Monday (9/8) I called Dr. Melekhin's office and her nurse called me back shortly after asking me loads of questions and said she'd talk to the doctor. Later she called back saying Dr. Melekhin didn't seem to be too concerned...

Ok? Am I the only one who is? That's what I was asking myself.

It's now been a week and I've been on the anti biotic for 4 days. When I changed the bag last night it did look slightly better, so maybe it was a peristomal ulcer that got infected? Who knows but I'm glad I dodged a medical bullet this time...

Onto happier news! It's not much longer until my nephew Jett will be here!!! It could be any day now although she's not due for couple more weeks. She went to the doctor last week and was already dilated 3cm! :D  She goes back tomorrow and I'm anxious!!!


PS) Tomorrow I have to call my insurance and track down someone who can tell me how to find a Rheumatologist. 3 of my doctors have tried referring me and so far they can't find one that accepts my insurance. Really? Oh joy! Fun times. NOT

*insert title*

I feel like I'm at a bit of a cross roads medically speaking... I'm healthier than I have been in well over two years, that's a GOOD thing, so why am I uneasy about it? One thing could be that I have been so ill for so long it's as if I don't know how to NOT be sick. Make sense? Another thing could be that I don't "feel" healthy which I know probably sounds really crazy but what I mean is there is always something hurting or throbbing, always a muscle cramp or some noise coming from Stella my ostomy. Yes I don't have blood draws and anti-biotic to worry about taking and I don't have to run the bathroom every 10-15 minutes anymore and I am SO glad... I just keep waiting for the next thing to happen, because in the past it has, and I get on edge and have to remind myself that for now everything is good. "Don't stress over what MIGHT happen next week" is what I keep telling myself, at the same time I reply to myself (I know crazy) "But I need to be ready so I can handle the next crisis"... It's sad I know. *sigh*

I'm not sure where this post was going, I had something else in mind but.... well maybe later :)
In the meantime check out these lyrics of a song I've been listening to a lot lately!


"In Time" - Kris Allen

Seems like forever since I felt alive
My whole world was shaken in the blink of an eye
And everybody's got a word
That's gonna take away the hurt
And make everything alright
But give me just a little while
Cause in time

In time I'll run
And in time I'll heal
And in time these wounds will show me what's real
And in time I'll learn
And in time I'll trust
And in time we'll love what's been broken in us
In time

Give yourself some distance, and what do you find
That it's in the shadow places you first see the light
And I know there's a reason
But I just can't see it
At least not tonight
But give me just a little while
Cause in time

In time I'll run
And in time I'll heal
And in time these wounds will show me what's real
And in time I'll learn
And in time I'll trust
And in time we'll love what's been broken in us
In time

Wait, wait, for it now
Wait, wait, for it now
It's coming, it's coming
Wait, wait, for it now
Oh, won't you wait, wait, for it now

In time I'll run
And in time I'll heal
And in time these wounds will show me what's real
And in time I'll learn
And in time I'll trust
And in time we'll love what's been broken in us
In time
In time

insomnia...

I'm bored and can't sleep, and that's never a good combination LOL


1. WERE YOU NAMED AFTER ANYONE?
No

2. WHEN WAS THE LAST TIME YOU CRIED? 
 Sometime last week... it happen, I've learned to deal with it :p

3. DO YOU LIKE YOUR HANDWRITING?
Sometimes 

4. WHAT IS YOUR FAVORITE LUNCH MEAT?
oven roasted turkey :) 

5. DO YOU HAVE KIDS?
Nope

6. IF YOU WERE ANOTHER PERSON WOULD YOU BE FRIENDS WITH YOU?
Yeah, I'm a good friend (at least I think so) 

7. DO YOU USE SARCASM A LOT?
HA HA I don't always get when someone is being sarcastic... I try to be sarcastic and I just doesn't come out right.

8. DO YOU STILL HAVE YOUR TONSILS?
yes 

9. WOULD YOU BUNGEE JUMP?
I probably could if I knew I could without causing worse medical problems 

10. WHAT IS YOUR FAVORITE CEREAL?
Lucky Charms  

11. DO YOU UNTIE YOUR SHOES WHEN YOU TAKE THEM OFF?
Nope, my converse stayed tied all the time 

12. DO YOU THINK YOU ARE STRONG?
For the most part, yes.

13. WHAT IS YOUR FAVORITE ICE CREAM?
Chocolate or Blue Bell's Homemade Strawberry

14. WHAT IS THE FIRST THING YOU NOTICE ABOUT PEOPLE?
probably their eyes 

15. RED OR PINK?
umm, both? 

16. WHAT IS THE LEAST FAVORITE THING ABOUT YOURSELF?  
I'm too quiet sometimes.  

17. WHO DO YOU MISS THE MOST?
right now my best friend who lives in Texas

18. ANY TATTOOS?
yes, 7 

19. DO YOU HAVE ANY HOBBIES?
reading, playing Sims 3, crocheting 

20. WHAT COLOR SHOES ARE YOU WEARING?
i'm barefoot 

21. WHAT WAS THE LAST THING YOU ATE?
pizza 

22. WHAT ARE YOU LISTENING TO RIGHT NOW?
Sara Bareilles "I Choose You"

23. IF YOU WERE A CRAYON, WHAT COLOR WOULD YOU BE?
plum

24. FAVORITE SMELLS?
freshly cut grass, rain, apple cinnamon, chocolate chip cookies fresh from the oven, Eucalyptus 

25. WHO WAS THE LAST PERSON YOU TALKED TO ON THE PHONE?
My papa

26. MOUNTAIN HIDEAWAY OR BEACH HOUSE?
depends on the time of year 

27. FAVORITE SPORTS TO WATCH?
The Olympics, I like both summer and winter events

28. HAIR COLOR?
dark brown/auburn-ish 

29. EYE COLOR?
blue

30. DO YOU WEAR CONTACTS?
No

31. FAVORITE FOOD?
eh, I don't really have any favorites right now. I got burn out on my all time fave mac-n-cheese

32. SCARY MOVIES OR HAPPY ENDINGS?
mostly happy endings, but I like a scary movie here and there 

33. LAST MOVIE YOU WATCHED?
Breaking Dawn Part #1 

34. WHAT COLOR SHIRT ARE YOU WEARING?
red

35. SUMMER OR WINTER?
I prefer spring or fall actually 

36. HUGS OR KISSES?
Hugs

37. FAVORITE DESSERT?
do cookies count? 

38. STRENGTH TRAINING OR CARDIO?
umm neither, unless walking is one of those...so cardio? yeah 

39. COMPUTER OR TELEVISION?
both 

40. WHAT BOOK ARE YOU READING NOW?
Gone Girl by Gillian Flynn 

41. WHAT IS ON YOUR MOUSE PAD?
i'm on a laptop 

42. FAVORITE SOUND?
rain, my cat purring is more of a vibration but it's my favorite too 

43. ROLLING STONES OR BEATLES?
Beatles 

44. WHAT IS THE FARTHEST YOU HAVE BEEN FROM HOME?
Texas 

45. DO YOU HAVE A SPECIAL TALENT?
Not really 

46. WHERE WERE YOU BORN?
Dearborn, MI 

47. WHERE ARE YOU LIVING NOW?
Manchester, TN

48. WHAT COLOR IS YOUR HOUSE?
dark tan siding 

49. WHAT COLOR IS YOUR CAR?
beige/gold 

50. WHAT'S YPUR BIRTHSTONE?
Aquamarine, I love the color of it

51. DO YOU KNOW WHAT YOUR NAME MEANS?
yeah, it means "fair one"

52. WHAT'S A PHRASE YOU SAY OFTEN?
"it is what it is"

53. LAST CD YOU BOUGHT?
MKTO (no shame!)

Thoughts

Warning: this may be all over the place...

  Tonight (or morning technically) I have these random thoughts rushing through my head as I lay in bed with my headphone on listening to MKTO (fave new obsession of sorts). Friday (18th) will be my stomaversary. What is that you say? Well it's the "anniversary" of getting my stoma (see previous posts). As I lay here I wonder just how many of my friends actually know what a stoma, or an ostomy bag is and does it change their perception of me? I know that may sound crazy but it's a serious thought I have. A LOT. I try to be careful not to openly post things on my facebook about it... but not because I am ashamed. Truth is I'm not sure how others will handle it. I know a few people know what I've been through, even fewer have actually seen me since getting my bag. Sad but true, but hey it's not like I was ever a partier before getting so sick I thought I was gonna die. (it's the truth) Anyways getting back to my thoughts...


  Does having this thing attached to me really change how people see me? It shouldn't, but sadly there is such a misconception of ostomies and what it means that I feel so many shy away from asking questions out of fear. Maybe I'm wrong. I hope I am. I like to think I don't care what others think of me and on some level I don't, I'm confident in my own skin. On another level I do care, I think if everyone was honest a part of them cares just a bit. Truth is I do the same thing everyone else does just in a different way now. Yes, I just went there, LOL.

  It has been a hard year, but I have over come a lot and as I embark on what this journey will throw my way I have these random thoughts. Crohn's disease is a cruel thing and I struggle every day not to let it turn me into a bitter person who sees the world as the glass half empty. Honestly it's hard, but I have a good support system. I feel blessed to have my family. My friends, the ones who really KNOW me, gosh I don't know what I'd do without them. Near or far they have taken time out of their days to check on me. They know who they are. I wish one of them lived closer, a lot closer! I miss her so much :(

  Well, I'm not sure this made much sense but my head seems a bit less cluttered so mission accomplished! To whoever reads this, thank you. Really :) 

Time for snuggles with my babies, until next time :)

It's almost been a year

On July 18 it'll be a year since I had life saving surgery. A year since I was in the worst pain I have ever been in. A whole year of fighting to not let Crohn's Disease over take me, and not letting my ileostomy define who I am. It hasn't been easy, but then again nothing in my life has been. Most days I accept that this is my new way of life, but some days I just want to scream.

I honestly don't remember much from last summer, especially the end of June and on. What I do remember is being so scared but not wanting to show it. I KNEW something was wrong but I had been doing all the right things. Going to my doctor appointments and taking the suggested medications... I was in the hospital a total of 6 times and had several blood transfusions and all the while nobody seemed to know what was really happening to me. My insides were falling apart and I was slowly filling with toxins...

 Flash forward 12 months and now I'm an ostomate for life with my permanent "mate" Stella. She's a real diva and very picky about the bag she carries :p

The last year in pictures

I dropped 59 pounds this year.... can you tell?

Me now, almost 4 months post surgery...just after a bag change for Stella at 10pm. You can't see my backwards shaped question mark scar going down my tummy, perhaps one day.

Me a month after surgery

Taken in Feb. of this year right before I ended up in the hospital the first time

Me last December, I remember feeling like crap but got out of the house to go to the parade anyways :)

Last September 2012 going to my "other" sister's wedding

January 2012 before it started getting bad

Crohn's.... what it's like for me

This is probably gonna be spacey and all over the place but hey that's how my brain is these days :)


Crohn's Disease: an inflammatory bowel disease (IBD). It causes inflammation of the lining of your digestive tract, which can lead to abdominal pain, severe diarrhea and even malnutrition. Inflammation caused by Crohn's disease can involve different areas of the digestive tract in different people. The inflammation caused by Crohn's disease often spreads deep into the layers of affected bowel tissue. Like ulcerative colitis, another common IBD, Crohn's disease can be both painful and debilitating, and sometimes may lead to life-threatening complications.



That's a lot to process, huh? Before I was diagnosed I wasn't entirely sure what Crohn's Disease was. I'd heard of it here and there but never paid much attention. I had other things to worry about, one being the rare bone syndrome I was born with. Little did I know I would one day have Crohn's, would fight daily for my mental AND physical health and eventually have life saving surgery resulting in an ileostomy(Stella).

Truth is nobody thinks they will ever get really sick, sick to the point you just might die and lord knows you want to from the pain...but when you do there are two choices:

Fight with everything you have or let the disease take over.

There are days I think about just letting it take over but I'm a fighter and there's a fire deep inside me that prevents me from totally giving in. I was born with it and it's really all I've ever known. Other days I have the mind set of "I've got this!"... I savor those days because they are few and far between. Mostly I'm somewhere in between wanting to giving up and thinking I've got this thing beat. I don't get out much, I panic when I'm out in public sometimes afraid my bag will leak. Driving used to relax me, not it makes me very nervous. A lot of my family thinks I'll "get better soon"... the ones who know what's really going on know I won't, but I keep trying!

Crohn's isn't a death sentence but it's no walk in the park either. Some days I want to scream and there are occasions when I actually do and boy does it feel good! I used to wonder why people thought I was strong, brave, could face anything... then I got Crohn's. Guess what?! I AM all those things and I believe it's because of everything I have faced in my 29 yrs on this planet.