Long Time No Squeak

I've grown away from this blog. I'm not proud of it, but lately it just seems depressing to me to post anything that could be Crohn's-related. The truth is, I've been focusing so much attention on trying to work, that I've been straight up ignoring my body.

Stupid. I started writing Stale Cabbage to have something to look back on in times of weakness. To remind myself how hard I've worked to accomplish not only finding peace with my disease, but finding peace within myself. So here's the deal, Alicia. listen up.

Just because you have more energy than you did a month ago, doesn't mean that you're any closer to remission. You know damn well that when a flare comes, it starts to brew long before there are any tell tale signs. Are you seriously thinking that ignoring the teeny red flags of your irresponsible dietary actions will keep your sickness at bay? Come on. You also don't want to realize that taking it easy isn't just something that most people wish that they could do- it's imperative for you. Man up. Take responsibility for that little body, because you haven't gotten it back to one hundred percent yet. That doesn't mean that it's okay for you to sit on your ass, either. I want you churning out more drawings than you know what to do with, making connections left and right, and organizing what to sell, how to sell it, and closing every deal that you can.
Then, I want you to blog about it.

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When you're scared of something, you tend to want to ignore it. People put things off all the time because they're afraid the outcome will be different from what they expect. I guess showing courage in situations that you don't want to recognize is something that few people are actually able to do. I also suppose that when faced with that very dilemma, I've been a mouse. You know, you're either a man or a mouse, right? But let me tell you a little something about mice. They're smart. They may run into a wall the first couple of times they try to find their way out of some shit-- but when they know what they're doing, they show up again with a greater strength. And an army to back them up.

I think that I am ready to spend more time thinking about what I need to do to make things right with my bod. I've started to resent it for everything that I've been through, and recently- I've been feeling not so great. I've been taking that out on the people that are closest to me, and I feel retched. For that, I am so, SO deeply apologetic.

So pals, mind doing me a solid? Tell me when you think I'm being an idiot when it comes to food, rest, and alcohol. I may squeak like hell for a bit, but I promise I'll share the good cheese with you... you know, when I can truly stomach it again.

Bod Update

Okay Guys, here's a quick update to get you up to speed on some stuff since my last scary post about LGSIL.

I had a colposcopy, and it wasn't awful at all. Having anyone down there looking at your business is awkward, especially if you're part of a teaching hospital [Have I got stories...], but  when I got to BIDMC and had questions for the OBGYN, they were answered with smiles and a bit of giggling. If you're a patient, and you're in for some not-so-comfy stuff, having a sense of humor about it not only makes you feel a lot better, but it helps to put nursing staff at ease. Makes for a pretty fun appointment, even if you're a little scared. 

Luckily, I didn't even need to have a biopsy of my cervix taken. Seriously happy about that, because I had mixed stories about the amount of pain felt during that particular part of the colposcopy. Endless thanks again to the lades that helped me to understand what was going to happen, seems to be a fairly common occurrence among young women these days.

Vag news aside, I am struggling with something called Peripheral Neuropathy. I was taking two pretty heinous antibiotics for a colon infection that landed me in the hospital a couple months back, and this unfortunate ailment is a common side effect.  My feet and mid-calf areas of both of my legs are painfully tingly. My skin is sensitive to temperature and pressure, and both of my legs spasm. It's been keeping me up at night, and hurts something fierce. I was prescribed what was once an anti-epileptic drug that is now used for nerve damage, but I decided to explore holistic options instead. I mean, I got this weird ass condition from a drug that I took to fix something else in the first place. Eff all that noise. I've been reading a great deal about R-Alpha Lipoic Acid and it's work against nerve issues. I went to Cambridge Naturals, they are so great, and got myself a little bottle of the capsules. Let's hope it helps!

Other than that development, I am happy to announce that I am becoming very busy with work. Illustration and freelance artistic endeavors have been tying me up, and I love it. I can go back to planning for my career in drawing pictures all day. What a wonderful thing. Thanks to everyone who has kept me going when everything felt too overwhelming to move on from. You guys are totally awesome.

I hope that you have a wonderful Tuesday. 

Dance around if you can, I miss that very much right now. I'm working on my shoulder shimmy in the mean time.

Oh my God, My Junk Is Bad.

Have you ever had an abnormal pap? I've read that tons of women have. It had never happened to me until just last month. All I could think was, 'What's wrong with my hoo-ha??'

My doctor told me that I had some unusual cells on my cervix, and that a Colposcopy would have to be scheduled to get a closer look. The condition is called LGSIL [Low Grade Squamous Intraepitheliel Lesion]. That particular website scared me from the get-go, because the word CANCER is in the URL. Don't get too nervous, those odds are rare. I waited what seemed like a year for my appointment, and thought it would be a good idea to read up on what was going to happen.

I scared the Bejeesus out of myself. My advice to anyone doing their research on a procedure that they're scheduled for has always been to make sure that you read enough to know about what to expect, but not too much that will freak you out about what you may or may not have to do. I found articles explaining the removal of pre-cancerous cells, the horrors of HPV, and accounts of painful doo-dads that Gynos use for different types of procedures. What I learned was this:

-High Risk HPV isn't as scary as it sounds, but it does need to be monitored.

-Having it doesn't mean you're a dirty person.

-When a doctor tells you that you need a Colposcopy- you should keep in mind that it is pretty much a pap smear with a camera. [You can see your cervix!] It is much more common than you think. The whole thing takes about a half hour, and you may not even need a biopsy.

-For the ladies that do need a biopsy, the pinch [which feels similar to getting your blood drawn] should last only about 15 seconds.

-If you have an abnormal pap, have a Colposcopy, and find that the lame cells on your cervix are indeed a bit strange, your Gyno will have you back in 6 months to check things again.

-These cells can either dissipate on their own within about two years, remain the same and never turn into anything worse, or become cancer. As long as you go back to your Gyno for scheduled paps, you'll be able to catch it before it is of major concern. My doctor told me that it takes longer than six months for those cells to become cancerous, so they et you back in time to make sure everything down there is a-okay.

If you are scared, ask questions.

The staff will talk you through what they're doing, and you can watch the whole thing on a screen as it's happening. The nerd in me is still excited about that part. You have the right to know what's going on with your body, and I think that's our privilege as body-owners!

I just want to say thanks to the handful of gals that helped me prepare for this. It wasn't awful, and now I can add some vag knowledge to my list of things to know. It was super relaxing to learn that some of my friends had gone through this, and I'm happy to have had their support.

Oooh, oooh... I also learned that if you're a smoker, your down there part actually takes in more carcinogens than most parts of your body! Ick! 'Those pretty little girls don't care about their hearts or lungs, but tell them they're 'stuff's in danger, and they're allll ears' -Nurse Marty, BIDMC.

Vagina Power!

In Mexico, It's Called Remicado

I will now vividly recall the events of last Thursday, the day when Remicade made itself apparent as a non-opntion in my Crohn's fight.  Creepy stuff.

I went into the BIDMC Pheresis Unit at 7:15 to start pre-medicating [I had a reaction of chills and lower back pain during my second infusion, and we used Benedryl to help counteract it as it happened].  We tried both Hydrocortizone and Benedryl this time before my Remicade, to pack more of a punch.  

I was nervous at the start, I hate IV lines.  I felt more and more relaxed though, as I watched my favorite Girls- the Golden variety.  I was all set to start my third and hopefully, more successful Remicade infusion. 

I even got my own little tv.

I was super groggy from the Benedryl.  I started to doze a little when I felt the smallest sensation of restlessness in my legs.  I have been on steroids a number of times, and this is one of the side effects.  I have never had them through an IV though, and I wasn't expecting this feeling.  It was a bit strange, sort of just makes you want to shake it right out of your hands and feet.  You can't really do that in a hospital bed, though.  It passed after a couple of hours and really wasn't so bad.  Then, I started noticing that there was a heavy feeling in my chest.  I was tired and breathing slowly, this was more of a pressure that came on quickly.  I couldn't breathe as well, either.  My throat wasn't closing up, but I was definitely having a serious reaction.  

I called for my nurse, loudly, and she came and stopped my infusion.  Within the first 15 minutes of an IV Remicade infusion, and I'm not sure if this is for every drug, you only get 3 drops of the drug.  I wasn't yet that far in, and I was already having a reaction.  My nurse and I sat together as she asked me what I was feeling and helped me to stay calm.  Freaking out when these things happen will only make them feel worse.  You've got to keep calm so you can describe to the people around you exactly what you're feeling.  If you would have blindfolded me, I would have told you that there was a small elephant sitting on my chest, holding down my arms, while keeping his trunk over my mouth.  I just couldn't muster the breath to explain what was going on!  My nurse seemed to understand with the few words that I let out.  Then, the back pain came.  I have had lower back pain for the last few years, only really bothering me if I slouch too much, but this was different.  I had twinges of it during my first baby reaction during the last treatment.  A serious and very deep throbbing, this time.  I couldn't move my back at all while it ran through my spine. 

I waited before breathing, because it seemed to make it worse, but it only lasted about ten minutes after my nurse stopped the drip.  It sucked, but I was happy to learn that this treatment was something that I didn't want to go any further with.  I was bummed, because that meant continuing the search for what might bring relief from the symptoms of Crohn's.

A girl just can't win.

Think about it this way-- if you had just eaten a double burrito with fire ass salsa after a night of heavy beer drinking and needed to drop it somewhere, and this is what you saw everywhere you turned:

You'd be pretty frustrated, right?

I saw my doctor about a week after that whole ordeal, with labs in between and some phone calls about my other medications.  He thinks that Humira is the next step.  Thinking on it, in terms of side effects, it's like taking a step down from Remicade.  I'm happy about that.  I'm not as deep in research as I could be about Humira, but I will be, I've heard alright things.  I don't want to be on any drug, but my phlegmon is worse than we thought, and the bowel wall has been perforated.  It could result in an abscess, which would require surgery and ultimately mean more antibiotics anyway.  All of these drugs take their toll in different ways, and I certainly don't want more than I have.  5 is enough.

I am working with a Nutritional Therapist, a Psychological Therapist, my GI Team, and super supportive family to find out what's going to work best for me.  Time is an issue, and I'm trying to keep stress down.  It's nerve-wracking to have to think about this stuff all day, every day.  I'm becoming more and more frustrated that in every new direction I have turned, I've found another dead end.  I could cry forever.

Fuck that noise.  It's nice outside.

My Friend, Phlegmon

Shooting pain in the lower left side of your abdomen isn't a good sign.  On the right side, if you've still got an appendix, at least you know that he could be the culprit.  But, if you have Crohn's Disease, left side pain is not a nice thing.  I had been out of the hospital just a few weeks when I started feeling a little swollen in the belly and having a strange discomfort.  It got worse over the next week and off I went to BIDMC Emergency.  Again.

It seems as though every time I go into the ER, I am bombarded by heart monitors and swarms of medical staff.  My hear rate has been super high and I am left with those sticky little fellas that hurt like hell to remove. I recommend olive oil and not rubbing alcohol, my skin is crazy sensitive and I have small tears where the stickies were.  This is from last month's ordeal.

Since my regular GI Doc is out on maternity leave, I called within that first painful week and spoke to the fellow who'd taken over my case for the time being.  I told him about my pain, and he said that means my ulceration is 'healing'.  What a stupid thing to say.  Within 5 days of that spectacular response, I was admitted once more.  I had endured huge amounts of pain because I thought I was 'getting better'.  Hooray. 

[I have since been referred to a different doctor on the team and I am much happier.]

After a whole lot of testing in the emergency room, and morphine- which I have never need in the past, we found that I had what is called a Phlegmon.  [We weren't sure if my ovaries were at risk for infection or disease, so ultrasound and a pelvic CT scan were ordered, and once that was out of our minds, we concentrated on this new infection]  A phlegmon is basically a gathering of pus and/ or bacterial infection that pretty much hasn't amounted to anything.  So, pretty much an abscess or fistula that would/ could have formed but hasn't yet.  Kind of like me, right?  All the goods but no formed plan?  Awesome.  At least I can relate to my infections.

If you have a little body, and you're unsure of what your IV needs are, ask your nurse.  They will explain everything you need to know, and they will start your IV very slowly for you if you ask.  Some meds sting a little, and it's really helpful to have a god idea about what's happening.

I was started on two IV antibiotics, which usually work together for things like this.  I had an omental infarction about a year and a half ago, which is another infection- pretty much of the guts outside of your colon.  That was super fun.  Anyway, the two antibiotics are Flagyl and Cipro [those are shorter names for longer meds].  I will be finished with them one month from the initial start date.  Because I needed them through an IV, and we were still unsure of the path of this phlegmon, I had to stay and be monitored for 5 days in the BIDMC suites.  I was in the Farr building this time, a first, and the staff was fantastic as usual.  The only thing about being in the Farr building that I didn't like was the lack of younger people around me.  

I found a dry erase board in one of the computer rooms and made myself a little more comfy. 


There were Therapy dogs in our building!  Their owners, who are volunteers with the hospital, were awesome, and each pup had a great and very friendly personality.  I got to hang with three of them during my stay, and they're a real help when you're lonely or scared.

Ziggy!


Of course, for most of my being admitted, Steven was away on business- this time for two weeks.  That's just the luck we have.  He was in Denver filming for Chrysler, and then in Austin, directing his first commercial for television!  Zipcar!  I am soo proud, and his producer sent him home a day early to be with me in the hospital.  I also had a visit from my friends Rachael and Meg, and it made my week.



I have lots of blog-worthy stuff on reserve from the past few weeks, and I'll load ya'll suckers up soon.  Appointments and meetings that went really well, and some info on new doctor peeps.  Today, I am in some pain.  Healing from an infection like that will leave you with tum tenderness, so you can't rush much.  It gets me out of doing dishes.


I hope everyone had a great Easter weekend.  And if Easter isn't your thing, hope you had a great weekend in general.  I spent mine in Marblehead, healing and having yummy meals with family.  Coloring eggs is always a good time, even if the tattoo-stick-on kind doesn't end up working. 


I feel like I've gotten to a point where I'm gabbing just to gab.  Been a while since I've written and I want to talk forever....  I'l leave you darlings with this.  If you feel like you're in a lot of pain, and that you can 'tough it out', think about your options.  Trust me, you don't want anything getting worse than it has to.  And if you talk to your doctor and get feedback that you're not sure of, don't be afraid to ask another one.


Trust your guts.  Not his.