The next few weeks

After reading yesterdays Thanksgiving blog, I couldn't help but laugh and smile at my optimism. The one part made me laugh especially was when I eluded to being free from referring to this Thanksgiving as one where I was sick or in the bathroom the whole day. Sure, this Thanksgiving day was great. But call me crazy, I think Thanksgiving 2009 might somehow be referred to as the one that occurred the year Ellen had two surgeries. I'll try to keep it optimistic but I think it would be forgivable if somehow along the way that great day got lumped together with this shitty year I've had.

Anyway, I had an appointment with my GI doctor last week to discuss how I've been feeling since I started Prednisone and also plan the next step in my treatment. Thankfully they agree that I should start tapering off steroids soon. So beginning this Sunday I am going to decrease my dosage by 5 MG per week. Historically I have always had a miserable time coming off steroids even at the slowest of paces. I am pretty sure this time around if I start to feel like crap I am going to take it even slower, at least to get me through the holidays.

We also agreed to start monthly infusions of Tysabri immediately. I talked in great detail about this drug before but feel free to google it. The main fear with this drug is developing a rare brain infection called PML. However, most of these PML cases happen to those taking Tysabri for Multiple Sclerosis and also patients who are concurrently taking other immune lowering medicines at the same time, like Remicade or Methotrexate. The goal for Tysabri is that it will start working for me just as I'm weaning off Prednisone, so as to not notice the usual intestinal problems that always return as my body gets less and less steroids each week. If I can successfully free myself of steroids this way, they will assume the Tysabri is working and also expect to see other improvements that steroids have not fully given me. The magic time frame is six months to be totally free of roids, with some improvement being seen after three months. My first infusion is in a couple of weeks before Christmas and every 28 days thereafter.

I'm starting to get to the point where I'm comfortable with my doctor and we don't spend half the appointment going over my history again and again. I guess after how sick I was this year he really learned my case, how my disease works, and my preferences for how to deal with it. He has also had a fellow joining in on my case. I like this guy a lot. I guess since he's only a fellow he's very attentive, knows my case inside and out, and seems a little more relatable than my doctor. He really did a good job explaining to me how exactly Tysabri works with the brain, rather than the rubbish I've read online that only really confused me. My GI doc couldn't believe how great I looked at my appointment. I have put on 20 pounds! Happily! Most of it came back on right away but then it stopped for a while, of course until I started Prednisone and became obsessed with cooking and baking. It's been enjoyable. Although if you asked my family they would probably tell me to lay off the baking before we all get fat.

Thankful

Just last year I was posting about my Thanksgiving, saying how I had chosen to eat over being comfortable and I was paying for it. This year it didn't even cross my mind that I might have to sacrifice my Thanksgiving gluttony for the sake of my poor intestines. Yes, this year was much different.

I made the whole meal for my family, with some help from ma and pap. It's now almost nine and I want to pass out but I was fine throughout the day. It felt great to be back to my old self again; making food and teaching my family a thing or two about the fine art of following a foodnetwork.com recipe. I decided this year with my new found attitude (thanks to the roids) to stray away from all of our old Thanksgiving staples like whipped potatoes with chive and the Campbells soup green bean casserole. Instead, I literally made everything from scratch, including frying my own crunchy onions for the green beans. It turned out to be quite a success. I couldn't be happier.

Just thinking about last year compared to this year makes me a little sad. Maybe because they were two totally different experiences and yet there is still so much uncertainty with my Crohn's. But I am going to be happy that in this moment, when I look back on Thanksgiving 2009, I will remember being with my family, sipping on my favorite wine all day, and laughing at the assignments I gave each of my family members who insisted on helping in some way. Cause if I think about it, holidays in the life of a chronically ill person are often referred to in terms of the status of your health at that particular time. It's always, "The Christmas right before Ellen got sick" or "The Thanksgiving Ellen spent in her room and in the bathroom". I am glad we can say different this year.

Just last night I got to spend time with friends I hadn't seen in ages who were my partners in crime in high school when I received my initial diagnoses at age 17. Granted I was a tad paranoid, a little bit in pain, and overall nervous about being so far away from home, I am so glad I saw them. I am thankful for my wonderful, amazing, and beautiful girlfriends. Old and new. It's amazing how you can not see someone for ages and the second they open their mouth, you're laughing and you remember why they were such a part of your life before. Times may change but there are certain people, regardless of where your respective lives have taken you, who always express the very sentiment you need at the perfect time. Things often come full circle in less time than you would have imagined.

I have wonderful male friends, too, who have been in my life essentially since birth. They may frustrate and annoy me, and many times I just don't get them but they always have my best interest at heart. I am thankful to have guys in my life who reassure me that my ileostomy is not the end of the world and point out the few advantages of having one in the most lighthearted way possible, who tell me my hair looks good because they know I'm self-conscious about it, and who constantly reassure me that I am beautiful, even on steroids.

And lastly, I can't help but turn this into a sap-fest because of how today feels. Just the milestone of knowing I felt a certain way at this very moment last year that I cannot even fathom today. To think at this time last year I had no idea what was ahead of me and now there is at least a plan in the works. Here I am typing to all of you with a full, pain-free belly. It makes me so thankful for my family because they are pretty much the most amazing people in the world. Every time I get upset my dad reminds me that Crohn's will not define my life. And that's not always an easy pill to swallow when you are in the midst of pain and anger but he is right.

There is much to look forward to in the coming months, much to be scared of, and much to be thankful for. Today, I am just thankful that I am in a place where I can find happiness even though I am still suffering from a horrible, debilitating disease. Nothing will ever be perfect but at least today, on a day surrounded my family and friends, I can see the light at the end of the tunnel. Faint and far it may be, but it is within my reach and I know the road I need to take to get there. I will get there. We will get there. And for that, I am grateful.

Road Rage

As much as I hate to admit it, steroids work for me. My current dosage seems to be working well in that I am not experiencing horrible side effects but my disease seems to be under control. Sure I've got the occasional emotional outburst (who's to say that's the roids talking) and a ridiculous increase in appetite, but I'll take it. Nothing is perfect but I feel alive again. I am out of bed every day and my energy is great.

I think this past week my family and friends really saw how much better I'm feeling. I've been baking and cooking almost every day and it has been therapy for me. I am glad I can make dinner for my family every night and it makes me happy to be able to contribute something after being idle for so long. I have been taking this week to prepare my Thanksgiving menu and my family couldn't be happier.

Today I went to the mall and it was amazing. I was by myself (which is how I prefer to shop) and I had not one worry about being struck with pain or needing to find a bathroom. I took my mom's laptop to be fixed at the Apple store and strolled around mostly window shopping. I did try on a couple of things at Macy's. I really wanted to buy this one dress but after not working for a year I am really in no position to be spending money (hint, hint, Liam, Mom, Dad, Ryan, Nora, or whoever else wants to buy Ellen something nice :). Afterwards I thought that realistically, where am I gonna wear this dress? But then I realized, I should be wearing a dress every damn day if I feel like it just for the fact that I CAN because I'm not as sick as I was.

I think it was this past Tuesday or Wednesday though that I had one of the best days I can remember. I got a good sleep Crohn's-wise the night before and woke up early. I spent the day with my dad like good old times. I can't describe to you in words how wonderful it felt to spend an hour browsing through Barnes and Noble with a latte in hand and not a worry about needing to give my dad "the look" that means we need to get the fuck out of here, NOW! Instead, we did our normal Ellen and Dad ritual. And being as how I hadn't hit my dad up for my standard book-a-week in 8 months, he was happy to buy me several this time.

Just the simplest things right now like being able to meet up with friends, going to the mall, and driving my car; they seem so trivial in the grand scheme of life but they are everything to someone who just months ago spent weeks not even taking a step outside her house. I am not happy that steroids has been the agent to get me there, but for now I choose to be okay with it. I feel like Ellen again. And my family is happy to have her back.

Nora

She's my best friend, she reasons, she talks me down from my panic attacks, she gives me the world, and always puts herself behind me. I don't know why I deserve her. But I love her so much.

"Sister" - Dave Matthews

Passing time with you in mind
It’s another quiet night
Feel the ground against my back
Counting stars against the black

Think about another day
Wishing I was far away
Wherever I dreamed I was
You were there with me

(Chorus)
Sister, I hear you laugh
My heart fills full up
Keep me please
Sister, when you cry
I feel your tears
Running down my face
Sister, sister, keep me

I hope you always know it’s true
I would never make it through
You could make the sun go DARK
Just by walking away

Playing like we used to play
Like it would never go away
I feel you beating in my chest
I’d be dead without

(Chorus)
Sister, I hear you laugh
My heart fills full up
Keep me please
Sister, when you cry
I feel your tears
Running down my face
Sister, sister, you keep me


I hope you always know it’s true
I would never make it through
You could make the heavens fall
Just by walking away

(Chorus)
Sister, I hear you laugh
My heart fills full up
Keep me please
Sister, when you cry
I feel your tears
Running down my face
Sister, sister, you keep me

The devil is back...

After a year of yelling at my doctor and surgeon, refusing to take steroids, I have ultimately broken down and agreed to take them. At this point I really feel like I have no other options. At the same time, I've come to the realization that this surgery was completely pointless. I could have just taken them a year ago and I wouldn't have even needed an ostomy. I could have used them to keep my flare up under control while I searched for an effective treatment. I feel like a complete failure. My plan has totally failed and now I'm stuck here with an ileostomy and steroids.

For those of you lucky enough to not know what steroids are, the actual drug is called Prednisone but it's easier to call them steroids among non-Crohn's people. People understand steroids; they understand the seriousness of what it means to be on them. Regardless, Prednisone is the one drug that every Crohn's and Colitis sufferer wants nothing to do with. Taking Prednisone means you have exhausted all other options and they have failed. Steroids mean your situation is so dire you would rather injest a pill with the most horrible side effects you could ever experience just to have some relief.

So here I am at 40 MG's of Steroids. Certainly not my highest dosage ever but just enough to bring around those awful affects that make life misery. I suspect I will start eating everything that isn't bolted down any day now. Then comes moon face syndrome which prompts friends and even strangers to inquire if you've recently had your wisdom teeth pulled. There's the acne, hair growth on your face and overall swollen appearance. Not to mention the depression one goes into when they try to come off of steroids and the mass amount of bone loss experienced from even the shortest stints on the rough stuff. Myself, I have Osteopenia in my hips and spine from my brief but intense affair with steroids in 2002. I'm trying NOT to end up with Osteoperosis and a hunch back at 25 but who knows. I made it so long avoiding this drug and it makes me so mad that I've had to succumb to this.

The funny thing is when people ask me how long I'll be on them. Is there ever a happy end with steroids? The ending is either that you've had to get surgery or after dabbling with a million new medicines which not much is known about, you've found a medicine that works. My own personal story with steroids never really ended well. As I weaned off of them I just got sick again and had nothing sufficient to treat me otherwise. Not until the discovery of Remicade at least. So here I am again, at the will of prednisone, with no end in sight.

Otherwise we are looking into another surgeon or even possibly another GI seeing as how mine won't grow a pair and state his opinion to my surgeon. I'm not sure how those hierarchies work when it comes to opinions among doctors but I can see the divide between mine and it might work out well for them but in the meantime I'm struggling and sick.

Also contemplating a return to my surgeons and doctors at the University of Maryland in Baltimore. I have a long history there and they took great care of me because they cared. I wouldn't be too enthused about the long trips down there for appointments and what not but I have realized it is a rare thing to find a group you can work with well and who you feel always have your best interests in mind. Is that too much to ask for?

The irony here is that I've been living in immense pain and discomfort for almost an entire year. Throughout that year they would never prescribe me pain meds. But hell, they love dishing out prednisone to you at high doses. I'm sorry but you can't even compare the side affects of the two. I know they worry about patients becoming addicted to pain meds and what not but I have shown I can manage it. And I'd certainly like to be taking some percoset over a medicine that makes me crazy and fat. But hey, at least I can go two hours without running to the bathroom. I guess that's the bright side.