Glory Tree Flowers

I recently guest posted for Glory Tree Flowers. Here's a link to the post. Thanks again to my bestie, Reagan Reynolds!

Goodbye, 25. Fare thee well...

I can't believe it's my birthday in just over 4 hours. Birthday's are always fun. I mean, let's be honest, who doesn't like a day that's all about them?? But I don't think I tend to really look forward to my birthday, as some people I know do. It has been a very long time since I've done anything big for my birthday, and I've had several pretty disappointing ones in the past that have somewhat dulled my excitement in the future.

But I'm not here to complain. Nor am I not looking forward to my birthday. Tomorrow I turn 26. That's a somewhat odd age. 25 is a nice round number and 26 is just, well, after 25. Plus, since I'm on this diet, we can't go out anywhere for it, so I'm stuck making my own dinner and without a birthday cake.

I think I'm just a little down today because I had a rough day... Crohn's wise. Symptoms were much worse today than they have been recently and it made me wonder if this diet is really working. I feel that I'm working really hard for it and giving up a lot and not getting any results. My doctor still says there're no other treatments he can recommend, so I'm feeling a little stuck. I'm not giving up or anything. I said from the beginning that I would give it a month and then reevaluate from there. And that's still another 2 weeks away.

But despite it all, I'm still looking forward to turning 26 tomorrow. I'm encouraged to see that I accomplished a lot of what I set out to during the past year of my life. I found a new job where I'm feeling more content; I'm definitely expanding my cooking expertise; and while I did not open a Roth this past year, Jarrod and I did have more time to enjoy being together.

I want 26 to be the year that I kick this Crohn's. I want to be able to look back years from know and know that at 26 - double the age of when I was first diagnosed - I was finally able to put this behind me. I'm doing my best to stay positive and stay on top of all of this cooking, buy some days are harder than others. I'm going to stick this diet out for another two weeks and figure out then if it's something I want to continue. Meanwhile, I'm praying and believing that I will walk away from this and leave it behind for good.

He said to her, "Daughter, your faith has healed you. Go in peace and be freed from your suffering."

Mark 5:34

What doesn't kill you...

I heard that Kelly Clarkson song "Stronger" on the radio today. And while I'm not really a big Kelly Clarkson fan, I do like this song. It's a good empowerment song. But today, I was really thinking about what this song was saying:

What doesn't kill you makes you stronger

Stand a little taller

Doesn't mean I'm lonely when I'm alone

What doesn't kill you makes a fighter

Footsteps even lighter

Doesn't mean I'm over cause you're gone

Now obviously this song is talking about a guy leaving her, but I was thinking about the other things in life that don't kill you. I know there are definitely things in my life that haven't killed me but have made me stronger. But that wasn't a given. If something's going to make you stronger, you have to fight for it to make you stronger.

There are things that may not kill you literally, but can kill you in other ways. Crohn's obviously hasn't actually killed me, but if I let it, it could run my life. It'd be so easy to sit around and feel sorry for myself all the time. I've tried to tap into the social media Crohn's community and I've definitely found people out there who seem to have given up and resigned themselves to a certain kind of life. But I'm not going to do that. And that's what has made me a stronger person. Without the things I've dealt with over the years, who knows where I'd be now.

I'm not saying this to try to sound impressive or prideful. I want to bring encouragement to anyone who may be dealing with a potentially "deadly" issue. It doesn't have to be health related, it could be anything. You can't just sit back and say, "Well, this will make me a stronger person someday." You have to want to be a stronger person. You have to fight to be a stronger person. Learn from your mistakes and from your trials. While they may seem too big to beat now, you keep fighting and you'll win every time.

You think you got the best of me

Think you had the last laugh

Bet you think that everything good is gone.

Think you left me broken down

Think that I'd come running back

Baby, you don't know me cause you're dead wrong.

1 week later

I've been on this new diet for a full week now, and can I just say, What a week it's been! I knew this was going to be difficult, but it has been a really tough week. The first few days were so restrictive that I didn't even want to leave the house because the smell and thought of food was driving me crazy. But I went out to a restaurant for the first time this weekend (not eating, just visiting) and it went OK. I'm not going to lie, it was hard watching other people eat all of the foods that I'm craving, but smelling the food was actually nice. You can kind of pretend that you're getting to eat it! (Wow, that sounds pathetic)

I was wanting to do a slow introduction onto the diet, but I realize now that I don't think that will work for me. I don't know that I'm disciplined enough to take a couple of months before I actually have a range of food that I can eat. I do know some foods that are more difficult to digest, so I'm holding off on those for now. I've added in some fruits and veggies and an assortment of meats (grilled up some lamb chops yesterday, yum!). My "splurge" was picking up some colby jack cheese and fresh almond butter. I maybe should've waited a little longer, but like I said, if I didn't have something good soon, I was going to go crazy.

I also made myself a almond butter & banana milkshake today with homemade yogurt. The yogurt is pretty tart, but I added in some honey and that helped. I guess it's just something I'll have to get used to.

I've been obsessed the past few days with looking up recipe ideas that stay within the limits of the diet. The thing is, eating on this diet (once you're fully on it) isn't difficult. You can make some great meals and there are pretty good substitutes that you can find for almost anything (except chocolate... sad). It's really just the matter of being able to go out to eat. I know I've harped on this a couple of times now, but that's a pretty big deal for Jarrod and me because we love to go out to eat. I love getting dressed up and going somewhere nice and having someone else put together the meal (and clean it all up!). Now, going out to eat is mostly going to be for other people, and I'm just along for the ride. I am planning on making some calls to some of our favorite places to find out if their food will be alright. I'll have to stick with meats (without certain rubs and spices) and veggies and salads.

Well, I've gone through all of this and haven't even mentioned how I'm feeling. I'm still doing just OK. I was feeling better for a couple of days, but then started feeling a little worse. The hard part is that I don't know what's causing it. It could be symptoms from the diet cleaning out my system and flushing the toxins; it could be that I ate something that didn't agree with me and I should avoid in the future; it could be that the diet isn't working. I suppose I'll have to wait it out a little longer to see more results. I think also that my body is adjusting to not being on any major medication. Still waiting to see what my future holds in that area. But all in all, I'm still hanging in there and waiting to see where this all leads.

Why is every commercial about food?

Seriously! The day after I start an uber restricting diet, I'm watching a little nighttime TV before bed, and EVERY commercial is about food! Oh, and everyone's eating on the show, too! Is it always like this? Or is it like when you're playing the Alphabet Game in the car as a kid and you can't find a stupid 'J' and once you finally, there's a 'J' and every sign you pass??

In all seriousness now... my first couple of days on the new diet have not been the easiest, but honestly, it's not been the food that's been the problem. I starting getting a horrible headache on Sunday afternoon while my mom was helping me get food prepared and it lasted until sometime this afternoon. Along with that came some nausea which made a couple of the meals a little difficult, but I'm doing much better now.

The food really is not too bad. Just a little monotonous (and it's only day 2). For the next few days, my diet will continue to consist of eggs, homemade chicken soup, grape jello, and hamburger patties or fish. The first 5 days is meant to clean out the system and sort of start to "reset" things. From there, you can start adding in more veggies, meats, fruits, nuts, etc.

Once you get fully on the diet, there are lots of options, but it does take some time to get there. Plus, going out to eat is pretty much always going to be a bit of a hurdle. But I know this is going to be a healthy lifestyle choice, even regardless of my Crohn's. Healthier, all-natural foods instead of so much processed foods. I'm kind of excited about it.

Ok, seriously just saw Red Lobster, Campbell's Soup, Fiber One Bars, a commercial not for burgers, but with them in it, and General Mill's cereal all in one break.

The end of... something

Today is my final day of eating a "normal" diet. I start the Specific Carbohydrate Diet in the morning. I spent a good bit of the day cooking with my parents, getting prepared for this next step. I've got soup on the stove, "jello" in the fridge and some eggs and beef ready to be eaten.

I'm definitely a little nervous. This is a big change, but I'm working hard to be prepared. The foods listed above are what will constitute my diet for the next several days. Depending on how that goes, I'll soon start adding in some new veggies and meats and eventually fruits and nuts.

I'll update how the first days go and post some good recipes I come across. This is the end of this part of my life, but beginning of something bigger. I'm really looking forward to feeling better.

Not what I wanted to hear

This is one of those blog posts where I don't know where to start. I want to be completely honest on here, but sometimes there are things I just don't want to tell everyone... like when I don't get good results from a colonoscopy.

So my week off hasn't been too much of a week off. I spent Tuesday preparing for my colonoscopy (which anyone who's had one knows, is much worse than the actual procedure.) I had the procedure yesterday morning. I had the good idea this time to have Jarrod record the post-op conversation with my doctor, since you never remember these things when you're under anesthesia. So this time I actually got to listen to the conversation after I got back home.

Basically he told me that things look worse since my last colonoscopy, which I had in October of last year, right before I started the new meds. So being on the new meds for four months has not helped and I am officially off of them now... which technically means I am on no medication for Crohn's for the first time in about 13 years.

He basically told me that for someone as high functioning as I am, I have the worst looking gut he's ever seen. He's always telling me how stoic I am and that my bar for "normal" is so out of whack that I don't even know what "normal" is any more. He wants me to consider surgical options. I don't consider surgery an option... at all.

I think all of this finally hit me today. I spent a good part of the day being pretty depressed. (I also blame the lousy weather a little.) Dealing with being out of work and bad results from this is a lot to handle all at once. But I'm done with that. Sometimes I think you just need a down day to get all of that out of your system in order to get past it and move on.

I had seriously been considering starting up the Specific Carbohydrate Diet again (info here) but had been waiting for the results from this colonoscopy. So now I've decided to start that on Monday. Jarrod is going to be out of town for work, so I figure it's a good time to get going on that. I tried the diet out a few years ago, but it didn't stick. However, looking back now, I realize that I was totally unprepared to start the diet at that time. I feel that I'm in a much better position to do it successfully this time.

It's going to be a big change. It's essentially eliminating all wheat/grains, dairy, soy and sugar. And what does that leave? Doesn't seem like a lot. But essentially, it's getting back to nature and making things from scratch. And getting a little creative with your cooking. It's going to be a lot of work, but if it helps, then it's definitely worth it.

I've been doing some soul-searching, too, on what God has planned from here. I know this isn't what he wants for me, but it's definitely hard to keep the faith when you feel like this all of the time. I appreciate everyone's prayers, cause God knows, I need 'em (pun intended). I know at this point, if anything works, it's going to be his doing.

New Meds: Round 3

Well today is my third infusion of the new meds, as soon as I get off from work. This one seems pretty important because I've been told that it's after this third round that you can start to be able to tell whether or not it's going to work. However, I've also been told it takes about another month to let the meds do their thing and actually make a determination.

But I'm excited today. I've had some positive things going on health-wise the past 2 days and I'm thinking that this infusion will only help. I had really started feeling like it wasn't going to work, but I'm much more positive this week. There are still the issues of the other problems that seem to be cropping up, but if I'm feeling better in other ways, then we'll have to work out some sort of list comparing benefits to side-effects.

I want to say thank you so much for every one's encouraging words and prayers over the past couple of weeks. They mean so much to me and I'll definitely appreciate them at 1:30 today! I'll let you know how things go.

Doin' alright

I'm afraid I've been sounding kind of "complainy" lately. All of my past posts seem to be about how rough things are in my life, when that's not really the whole story. I think it comes from a combination of trying to be more open in my writing and being willing to put stuff out there that I haven't always been comfortable revealing, and the fact that I'm just fed up with feeling only so-so.

Especially being on these new meds, my hope for feeling better has been higher and when I'm not feeling better, it has farther to fall. I'm not giving up hope, but I'm believing this will work, but it is hard when everything in your body tells you you're not doing better. But I have my 3rd round of meds this week, so I'm looking forward to where things go from here.

I really feel blessed in my life. I have a great husband, a wonderful family and friends, a beautiful house, a good job that pays the bills, the ability to get out of bed every day. Yep, I'm doin' alright.

A change in plans

Well, I feel like it's about time for an update. I've had another rough week, but getting back on track now. I wasn't feeling too great all last week, and it got to the point where I was just uncomfortable all the time. I've also been dealing with relatively severe dehydration and randomly spiking fevers, some pretty high. On Friday, my doctor recommended I check myself into the ER and see where things go from there, but at least I could get some fluids in me and some antibiotics, if necessary. (It really stunk because Jarrod and I were supposed to be headed to the beach for a weekend with my sister/brother-in-law and his sister/husband/baby!)

So I took myself over there after I got off from work on Friday, and about 12 hours later, several bags of fluids and a million different doctors' opinions, they ended up admitting me to the hospital. Due to some infections they found in my blood, they actually admitted me to the MPCU, which is apparently the in-between of normal admission and the ICU. It's closer monitored and they have you constantly hooked up to a heart monitor. And that's how I spent my weekend. Talking to lots more doctors and getting my system flushed out.

I was able to check out Sunday evening, which was nice, since they were considering keeping me there another day. However, it was a much more pleasant stay than my one back in October. But since leaving I've been keeping up with a nice little regiment of meds and have definitely been feeling better. I'm still feeling a little on the "down" side, but I'm confident that I'll continue to improve. I have my next infusion next week and I'll be glad to see what happens from there.

For now, I'm trying to take it easy and not over-exert myself... not the easiest task this time of year. At least I already had taken Monday and Tuesday off from work this week, so today's actually my first day back. Just taking it a day at a time.

And can I brag on my husband just a little bit? He was so amazing this weekend and stayed with me both nights in the most uncomfortable chair ever! And he got me food when the hospital stuff just wasn't cutting it and was there with me through it all. He really made a difficult time a little less difficult. Love you, baby.

New Meds: Round 2

Second dose of the meds went well today. Nothing earth shattering to report. The infusion was fine and I'm feeling alright now. Wish I had something more to report and hopefully I will in the coming weeks. 'Til next time.

Waiting for Round 2

I'm in the waiting room right now waiting to start my second infusion of my new meds. A brief update of the past four weeks: I've been feeling pretty good. I would say I've maintained my typical "normal". Which I suppose is a good sign with the new meds considering I haven't been off my previous meds before now. The past couple of days have been a little rough, so I've been looking forward to this appointment. I'll be sure to update following the infusion.

This is my first time posting from my phone, so we'll see how it goes. Speaking of that, how does blogger not have an app??

Round 1: Complete

I had my first round of the new meds yesterday. Everything went fine; pretty uneventful, actually. It was much less than I anticipated, just a small little bag. It took about an hour for the infusion to go through and I had to stick around for another hour for "monitoring" afterwards. I slept through most of it.

Now, 24 hours later, I feel about the same. No major changes so far. But as I said before, my doctor told me to give it 3 times before we decide its effectiveness. I already have those next 2 appointments booked, so right before Christmas I should have a better idea of where things stand. I'll post any updates if there are any...

Ready to start

Today is my first day of my new meds. I'm not gonna lie, I'm a little nervous. But just the sort of nervous you get when you're starting something new like this. I'm actually very ready to dive into something new.

 

I've been dealing with the same issues for so long that any hope of relief is a big deal right now.

 

What really makes me nervous is the fact that this is pretty much my last medical option out there. I've gone through so many other treatments that haven't worked and, at least for the time being, this is my last resort. That's why I'm really trusting that God will use this as the right option for me. But that's a hard thing to do. I'm doing my best to keep my faith alive and know that it's in His hands.

 

I also am keeping in mind that these meds don't often make everything better overnight. My doctor told me that it usually takes about 3 times before most start noticing a difference. That's 2 months from now. Of course, sometimes you may notice a difference right away, but I don't want to get discouraged if I'm not feeling great within a couple of days.

 

It's a lot to wrap your mind around. I think above all, I'm just ready to get things rolling. I'm glad that my issues over the past couple of weeks haven't pushed this back even further. It's time for a change and I'm trusting that this is the right one.

Not what I had planned

When I said I had planned to focus on me and getting back on track, I hadn't meant that I was going to neglect my blog, but unfortunately, life likes to get in the way sometimes.

 

I've had a rough couple here. I told you in my last post that I had been feeling a little under-the-weather following my colonoscopy, and honestly, things continued to go downhill from there.

 

I spent 2 weeks being very nauseous and dehydrated and basically just worn down... to the point where it was hard to get out of bed in the morning. I made it to 3 days of work out of 10 and one of those I had to have Jarrod come pick me up because my head was spinning so badly that I wasn't sure I'd be able to make it home. I ended up checking myself into the ER and spending a night at UNC Hospital.

 

Turns out I had an infection that was causing some other problems, so they pumped me full of antibiotics and fluids and I've been feeling much better ever since. However, it did remind me how horrible it is to stay in the hospital. It's uncomfortable, loud, smelly, there are constantly people in and out of your room disrupting you, and to top it all off, I had a shared room. When you're vulnerable and spending time in the hospital, the last thing you want is someone you don't know staring you down across the room.

 

But like I said, I'm doing much better now, trying to take it easy and get some rest. And I just realized, I hadn't mentioned that I start my new medication tomorrow! I'm really excited about the possibilities here. I'm looking forward to getting things rolling. I'll get into it a little more tomorrow. For now, back to the grind...

A different sort of goal

I've been out of loop for the past several days. Actually, I've been holed up in my house catching up on lots of sleep and drinking lots of water.

I had a colonoscopy on Monday, so I obviously had to spend the day before prepping for that (ugh!). It went fine. The results, however, weren't what I was hoping for, but perhaps what I was expecting. I still have to wait about another week for some more results to come in before I know when I can start the new medication.

Then to top it off, I've been pretty under the weather the past couple of days. I'm not sure if it was the procedure or maybe a reaction to the anesthesia, but I've been worn down, dehydrated and nauseous ever since I woke up Monday evening. I was finally feeling better today and got some errands run and the house tidied up... but this evening I'm not feeling as great. I got a little dehydrated again, so I'm working on downing a ton of water!

This is normally where I'd write my monthly goals and, honestly, I have some for this month, but that's not what I need to focus on right now. I need to focus on me and fighting this stuff. Now's the time that I have to make some very important decisions that will seriously affect the rest of my life. So my goal for this month is like I said: focusing me and getting back on track.

As far as last months goals, I did pretty good. However, I didn't read a good book like I'd like to have. I do want to do that soon.

I'm Negative!

That's right, I'm celebrating the negative today. I told you a couple of weeks ago about a test I had done that would determine whether or not I am a candidate for a new Crohn's treatment. (A Big Test) Well, I got the results back today and... it was NEGATIVE! (Which is a good thing because it means I'm negative for having this virus that can cause issues.)

I got so excited this afternoon that I literally started crying. All of the other medications I've ever been on have made my Crohn's "tolerable," but not much more than that. If there's even a chance that this one can make a difference then I'm ready to start right now! I do need to have a colonoscopy first (ick!) just to get a baseline for where things stand, so I'm trying to set that up within the next week or two. I'm hoping I can start this sometime next month, but I don't know if it'll be that quick. But I'll keep you posted on the progress!

A Big Test

I took a pretty important test today (and no, it was not a pregnancy test, because I know that's where all of your minds just went.) It was a JC Virus Antibody test. If you remember my post from a couple of months ago where I talked about some changes I was making because of my Crohn's Disease, I mentioned there was this new medication that my doctor wanted me to consider, but it's got some pretty bad side effects. Well, essentially, this test will tell me whether or not I have to worry about those side effects. My doctor told me before that you've got about a 50/50 chance of having it.

If it comes back negative, the odds of these side effects drop to almost zero. But if it comes back positive, the odds go way high and basically takes this new medication off the table. I've been on my current medication for about 2 1/2 years now, and it has never really made that big of an improvement in my life. I mean I'm stable and it's kept things at a tolerable state, but I'm looking for some options that can make a big difference. This new medication may be one of those options.

My doctor told me this test just got approved by the FDA in the U.S. and just got the approval needed from the UNC Hospital system like today. So I'm the first one there to have this test done. Don't worry, it was nothing fancy. All they did was take some blood, so it wasn't some weird test I actually had to do anything for.

But now I have to wait. Of course they weren't sure exactly how long since I'm the first one to have it done, but he thought about a week or so. I've been praying all day that this will open up some doors for me. I'll be sure to post an update when I know more. But for now... we'll just keep praying.