Waiting

Physically I have felt like garbage the past couple of days. Last weekend in particular was harsh and I found myself experiencing a different kind of pain than usual. This time it was more like a steady, sharp pain. It was far from excruciating but the level of pain changed as I adjusted how I was laying. These are often the pains I worry about because I have had similar pain experiences with all of my bowel obstructions. Whenever you twist and turn and your pain changes, you immediately think your bowel might be caught in a twist as well. At least that's how it's been for me in the past. Luckily I felt better after two days of laying in bed.

But then I have other pains usually in the early morning hours. From about 4 am on I am subject to a lot of cramping and my insides don't seem to settle down until anywhere from 10 am to 2 pm. During that time it is frustrating because I am in and out of sleep and I often cannot get more than a half hour of uninterrupted shut eye. Lately, however, I've been able to get on with my day as early as 9 a.m. which is much better than sitting around all afternoon waiting for things to quiet.

So here I am, waiting on Tysabri to take effect. This third infusion was supposed to be the magic number and I suppose in a couple weeks when I see my GI they will conclude that it isn't offering me any therapeutic benefit. Considering I am still on 40MG of steroids and unable to taper, I would have to agree at this point. We still do have a few weeks before we totally give up on it and I am trying to remain optimistic, but right now that is certainly hard to do. I imagine I should feel a significant improvement in my life like I did on Remicade and I am so far from it that there is no question in my mind this drug isn't cutting it at the moment.

The good news, if any, is that I haven't experienced any of the horrible headaches I got after all my other Tysabri infusions. That's quite a relief. But yes, that's the only good piece of news I can muster from this.

Anyway, on Thursday I went to support group again. I really haven't gone back since the first time, mainly because I wasn't feeling well and I was kind of discouraged with being the only person in their 20's at the meeting. But I figure if I have nothing else to do, I might as well socialize with people who are the closest to understanding what I am going through, even if they are in their 50s, 60s, and 70s. And, well, they are old people. And you know what? Sometimes old people say some funny shit.

I feel like often I offer more advice to others dealing with this then I get in return in the support group. Maybe this is because I am hung up on the fact that I have yet to meet another person in their 20's who is dealing with this. With this support group in particular, everyone but me had their surgery because of cancer. I try to relate to everyone but it can be hard. The reality is that most people don't die from Crohn's. I often wonder if the decision to have one's colon removed and opt for an ostomy is any easier when you know the alternative could be death. Either way, removal of the colon isn't always the ONLY option, but for cancer patients, it's often a better one when considering how it will aid doctors in administering chemo and/or radiation.

Sometimes I feel like a hypocrite when I offer my thoughts on having an ostomy to these people. I mean, how can I tell someone who is clearly distraught about it that it's not the end of the world and it will get better, all while my colon and rectum are still with me? Damaged they may be, but I have not had to endure their loss yet and that is a huge step that many of these people have had to come to terms with. Of course it's easy for me to say you can get through it because I have the hope of reconnection. For them, the decision has been made and there's no going back.

I don't know, as much as I tell myself I don't want to go to those meetings, I enjoy it. There's always a few married couples and one of them is supporting the other in their adjustment. The guy that started the group did it five years ago for his wife who had cancer. Then you have two friends who may come together just because it's their first meeting and they need the support. There's people contemplating this route surgery-wise or have it planned already who have no idea what to expect and desperately hang on every word spoken as to get any clue about what life might be like afterward. And then there's just individual people, like me, who live their lives because their life with an ostomy is a hell of a lot better than it was before. And after the initial shock of the surgery wears off, I think that's something everyone can agree on.

Another thing I realize at these meetings is that you just never know what people are going through in their lives. I think we sometimes assume that someone's misery in their life is going to be written across their face and the second they are in a crisis it will be evident. Sometimes I worry that people forget how sick I still am because the physical reminders are not so marked anymore. I guess my point is just to give people the benefit of the doubt. If you looked at me, you would never know I have an ostomy, never know about the past year of my life and the struggles I still go through every day. And while I try to never let my illness affect how I treat others, there are certainly times I have probably come off rude or curt to someone I've interacted with throughout my day simply because I did not feel well. Maybe I'm trying to say that I'd like to think most people in life have good intentions and you just never know what anyone is going through on a particular day.

I could easily throw up my arms right now and be sad about Tysabri not working. I won't lie, every day I get upset at least once about it. But the second my episodes are over or I know that I'll be okay to leave the house, I forget all about the pain, even if it was just a few hours before. It's pretty amazing to think how quickly you learn to adapt. The bottom line is, it's much easier to live your life when you can than to spend it being upset about the several hours a day that don't go right. Right now, I have about eight hours a day where I feel okay. And I'll take them happily cause it could be a lot worse.

Well, this was a bit all over the place but a lot happened this week that I am still digesting. Get it?

Tysabri Infusion #3

I just got home from my third Tysabri infusion. I must say it was quite an ordeal this time around. I was supposed to go on Wednesday but due to the weather they moved it to today and I'm pretty sure everyone else had their appointment moved to today as well. The thing with these infusions is that you don't want to wait any longer past your 28 days and understandably I wanted to get it in before the weekend. So while it took two hours before I was even registered, I'm glad I got it over with and was able to handle being at the hospital for five hours.

I think I'm going to be hyper-sensitive to my symptoms for the next couple of days and desperately searching for the slightest signs of improvement. I'm gonna keep doing my thing every day but hopefully things will be a lot easier and my mornings, which are typically the roughest, will start getting better.

As I've mentioned before, this infusion of Tysabri is do or die. If I don't see some improvement in the next couple of weeks then I won't be going for #4. I really haven't been able to get below 40 MG of steroids. At this point the steroids aren't doing much. I'm trying to think back to when I started taking them because I did profess that they were working. However, I don't know if I was simply content just to have some relief even if it was small or if they were actually doing more then. It's odd because sometimes I'm convinced I'm just taking a sugar pill because I don't really have the typical steroid side effects either. No crazy appetite, moon face, or mood swings. Maybe there's a conspiracy going on at my pharmacy from all the bitching I've done every time they've screwed my medicines up or didn't have things ready when they promised. Yea, let's just blame it on them.

Anyways, I'm looking forward to a low key Valentine's Day weekend. Nora, I wonder what Ryan is going to get us!?!?

Just dance, gonna be okay...

Yea, I did it. I quoted Lady Gaga.

Anyway, the past couple of weeks have been rough to say the least. I felt wonderful after my last infusion for a few days and was quite certain it was the Tysabri working its magic. I still think it could have been the last infusion because quite honestly the 40MG dosage of Prednisone hasn't been working the way it did before the last time I tried to taper. So either my disease is getting worse, which I doubt, or I was in fact feeling some benefits from the infusion.

Basically, I've been waking up day to day not knowing how the heck I'm going to feel. I usually take it easy in the morning hours while I get a grasp on how my disease is going to behave today. Even if I feel crappy in the morning, for some reason I am always given the 5pm-12am window of relief. And I gladly take advantage.

The positives of the past two weeks are that I have gotten back to exercising. Understandably I am not quite back to my usual routine of running miles and miles outside to nowhere in particular, but rather I've been trying to walk as much as possible on the treadmill. The problem is that I have absolutely ZERO energy and I am convinced that as long as I take Ambien, I will never truly be awake. I try to only take it when I absolutely need it but this is most of the time. When I wake up in the morning I have that Ambien fog in which I don't want to sleep all day but actually making it out of bed is very difficult.

As much as I hate Prednisone, I'd rather have the euphoria usually associated with this medication than the constant fatigue I experience when I'm trying to taper. And I'll be honest, the second I feel good, I give myself a few days and then I try to decrease my dosage by 5MG because quite frankly, I don't want to be on it for longer than I have to.

At the same time, succumbing to running on the treadmill infuriates me as a runner. It's certainly not the most ideal situation and I don't get the same effects. But I need to resign to the fact that it's something and I'll take that over nothing. There's just something about running in one place and being stuck inside that stifles my soul and only reminds me that I am far too sick still to be running outside with the rest of them.

And so that is my conundrum at this juncture in my life. I am far from healthy, but far from being sick. I am stuck in this middle ground. If you asked me a year ago if my situation right now would make me happy, I would have told you yes. I would have thought that being able to walk and run and be a part of my friends lives again would be the greatest thing in the world. But eventually, like anything in life, we all want more. Suddenly it's no longer sufficient enough to merely be passing through life, living and breathing, because now I want to participate in life the way I could before. And right now, I can't. I need more consistency in the improvement of my symptoms.

I want to be the better version of myself that has been lurking under the cloud of Crohn's for so long. I miss the randomness with my friends, not planning anything out, just flying by the seat of our pants. These days, I need to have much mapped out for me to feel comfortable doing anything. And if I'm not comfortable, my friends aren't. And I never want to compromise anyone else's good time at the sake of my own problems. I know I just need to appreciate what I can do right now but it's hard because what I can be is only one small percentage of what I am.

And yet every day when I walk on the treadmill I can't help but be bitter and feel stifled at what this disease has done to me. There I am, in my sisters basement, only in control of how fast or sharp of an incline I walk on. I don't control what is around me; a world moving on while I am merely replacing one foot step for another in the same exact spot I placed it in my previous stride. I am inside and everyone else is working, making plans, living life, and figuring shit out in the process...

At least when I ran outside I felt like I was going somewhere, even if that somewhere meant I would return home in an hour. But there was always the chance that I would be inspired to run off my usual path and take a longer, sharper route home. I want that option even if I don't utilize it.

I want to make mistakes. I want to fall down. I want to have the option of taking a more difficult path in my journey. But there's not much falling down you can do when something totally out of your control dictates how you are going to feel every day. I can only control how I respond. And right now I am choosing to get on that treadmill every damn day as long as God gives me the energy to do so.