"Get out of the bitter barn and play in the hay." - Pheobe Buffay

I had one of my worst days in recent memory on Monday, prompting me to consider if I am ready to continue this diet. It's only been three weeks but I expected to see some improvement by now. You are supposed to give it 4 weeks before you give up. I don't know if I can wait another week. 

One of the downsides, besides still feeling like garbage, is that I'm losing even more weight. I've lost 37 pounds in the last couple of months, with about 8 of those pounds coming off since the diet. Granted I was at the higher end of my weight spectrum when I got sick and I am sure a lot of it is lost muscle weight, it still has me worried. I'm weak and the last thing I need is to lose more weight.  The past 4 days I had intense stomach pain which made eating even more difficult.

It's hard because my eating options are very limited so it leaves me getting sick of certain foods that are good for me, like bananas and eggs.  I never thought I could get tired of eating beef pattys but I am. Right now what I need is gatorade and pasta. That would be ideal.  But part of me feels like I've invested so much time already I should just stick it out and try to be more fanatical about eating the really good stuff like yogurt and bananas.  

On another note, I haven't made the doctors appointment I was supposed to make two weeks ago.  I guess I have just been avoiding the inevitable; that I will most likely be admitted to the hospital and forced make a decision about whether I am ready to live with a colostomy.  Then again, I don't think I'll ever be ready.

To add more salt to the wound, I just read this article concerning Tysabri and the brain infection PML.  Turns out there has been another case this month.

And on a completely, different note...

I can't help but wonder if Kurt Cobain wrote "Pennyroyal Tea" about Crohn's.  If you google his name and Crohn's you'll actually see people talk about it.  I know he suffered from mental problems, too...and that could easily explain the song as well. Check it out the lyrics if you wish:

I'm on my time with everyone
I have very bad posture

Sit and drink Pennyroyal Tea
Distill the life that's inside of me
Sit and drink Pennyroyal Tea
I'm anemic royalty

Give me a Leonard Cohen afterworld
So I can sigh eternally

I'm so tired I can't sleep
I'm anemic royalty
I'm a liar and a thief
I'm anemic royalty

I'm on warm milk and laxatives
Cherry-flavored antacids

Sit and drink Pennyroyal Tea
Distill the life that's inside of me
Sit and drink Pennyroyal Tea
I'm anemic royalty



suddenly i am very aware of every time i ever faked being sick to get out of work or school


So I've done it...

As discussed in my blog previously here, I started the Specific Carbohydrate Diet (SCD) five days ago.  It hasn't been as hard as I thought it would but I'm sure eventually I will get tired of broiled meats, eggs, bananas, and homemade yogurt.  My sister came over the other day to make ketchup and today my mom made mayonaisse.  I haven't tried them yet but you would be amazed at how simple the receipes are.  Physically I have not noticed a difference yet but mentally I feel better knowing I'm not putting all that processed crap into my body.  Eventually that's gotta help.

I'm hoping I'll have better news to report to my GI when I see him in a couple of weeks.  He called me a couple days ago very concerned about things and throwing around words like "surgery" and "colostomy".  I can't even bring myself to think about that now.  I am a little worried because I've had a low grade fever all day and felt extremely lightheaded at times.  It's odd because since I started the diet I feel like my appetite has actually increased, so I don't understand why I feel so run down.  Maybe it's just my body adjusting to the change in diet.

Keep sending your thoughts and prayers my way.  I need it.

P.S. Sorry to momma Sweeney for calling her driving "crazy".  And shout out to my bff Claire for coming to see me last week and Jill for wanting to drive 2 hours just to watch me lay on the couch.  Love you guys.


Teen diagnoses herself

There was a neat article on CNN.COM today that my sister brought to my attention.  It's a great story and I suggest you give it a read.  It definitely made me grateful I was diagnosed so quickly.  I can't imagine suffering for all those years without treatment.  Anyway, check it out.


Being young was so much easier

Warning: This update isn't much fun and will selfishly serve as a place for me to tell you all how happy I am that I got the two drains left over from surgery removed on Monday!  Woohoo.  It feels so much better to be able to comfortably lay on my back and sit on my butt. 

So here's the wonderful story of my visit to the surgeon on Monday...

I'm in the waiting room and this poor guy next to me was there with his donut. Now when I say donut do not think Dunkin Donuts.  For people with any kind of butt issues, a donut can be your best friend.  It's this rubber-like tube thing you use to sit down when you have an abcess or some kind of rectal pain.  It's meant to ease the pressure so you can sit with some normalcy. He must have been a seasoned veteran of rectal problems because his donut was patched up in various spots with duct tape.  Just imagine...this guys ass hurt so much that he carried this donut through the hospital and into the waiting room.  But that would have been me a month ago with my pretty red donut.  Yes, abcesses are a bitch.

So in the exam room some clueless nurse practitioner came in to talk to me without any knowledge of my surgery.  She had to leave the room at one point to "look up my file on the computer".  Isn't that something you should do before you talk to a patient?  Anyway, she did her little exam and listened to my heart.  She was quite concerned about how fast my heart rate was because that is an indication of dehydration.  I love when they ask, "Are you drinking enough and eating?"  Ummm HELLO.  I have Crohn's disease and you are aware I'm in the middle of a flare up.  I understand they have to ask...but really?

Now I had myself all worked up about getting the drains out.  For those of you who don't remember, I had three drains removed in the hospital after surgery and it was SO darn painful I thought this was going to be the same way.  After turning and laying on my left side (eek), the doc did what he needed to do to get access to the area.  Haha, ok, my butt.  The best part?  He stuffs gause in my behind and then leaves the room for ten minutes.  So I'm laying there...ass exposed...with gause up there like stuffing in a turkey cavity.  Thank God my mom was there to provide some comic relief.  After he came back he cut the bands of the penrose drains and removed them. Thankfully, it didn't hurt at all because my tolerance for pain at this point is shot.

Just when I thought I was free to go, the surgeon tells me that he called my doctor (who is in Chicago at the moment, mind you) while he was out of the room because he was concerned about my appearance and weight loss. They wanted to hospitalize me a few days with IV antibiotics and some fluids to improve things a little bit.  After a few tears I told the surgeon I would be more comfortable at home.  I really didn't feel like hospital food and inconsiderate loud people outside my door at 3 am were really going to help me get better.  So I was sent on my way with oral antibiotics and well wishes to "hang in there kid".  

So two hours later, a couple of presciptions, a few tears, and two less drains in my butt...we were on our way home!  I actually sat in the car like a somewhat normal person but eventually reclined the seat to combat both my mom's crazy driving and my sleepiness.

My goal is to be able to drive my car by Sunday.  I haven't driven her in over a month!  I can finally sit flat on my butt so it's only a matter of feeling well enough to get behind the wheel. I've been laying down so much it's been hard to sit up straight and believe it or not, it actually takes energy to keep yourself upright.  

Till next time...